The Trouble with Normal
Loud music pounds through the ceiling from my daughter’s room upstairs. I poked my head in there a while ago and found that she was reorganizing her closet, so I left her alone. Now she’s engaging in a time-honored teenager tradition of rocking out to music while she intermittently gets some work done.
I love hearing music coming from her room. In fact, all of the typical teenager things she does make me smile—staying out too late with her friends, having impromptu get-togethers at the coffee house, getting picked up by her friend (who is a “VERY safe driver!”) and seeing a movie, wearing too much makeup, having crushes…all of it gives me a huge grin.
Because my daughter has OI.
When my daughter was born, I was a young, married college student with no family support, a professional-musician husband (who later became an ex-husband) and a four year old son. Our family doctor knew so little about OI that what he told me turned out to be outright false. The specialist at the hospital where my daughter was taken (by helicopter) for the level III NICU was kind and compassionate, and I believed everything he said.
Unfortunately, he was wrong about a lot of stuff too.
So I spent her early years thinking that my daughter wouldn’t survive into adolescence. That she may never hold a pencil. That she would probably never walk. All kinds of other misinformation floated into my consciousness and I believed it. When I finally had contact with other OI families, my life—my daughter’s life—changed. Where we are now is so normal for having a teenager that sometimes that normalcy overwhelms me. I have an unyielding urge to celebrate that normalcy, though 95% of the people around me every day would mark me as a lunatic for dancing and singing about my daughter’s teenage rebellion. But I celebrate. I watch my daughter with her friends and my heart cries out with joy. When she and her brother bicker over computer time, I close my eyes and soak in the noise. And when she impatiently waves me away as I watch her get into the car with her friends, I cheer silently. Maybe I’ll get used to this and stop getting so excited, but these days in my daughter’s life are days I thought would never come.
My daughter just rolled into the kitchen. It’s 2:30 on a Sunday afternoon and this is the first time she’s been downstairs all day. The other teenager in the house, younger brother Thomas, has been up a whopping two hours. They both go back to school tomorrow, and life gets back to the regular routine. They’ll have trouble getting ready, we’ll probably be late, and I’ll have to remind at least one of them to wear a hat ‘cause it’s cold outside. Normal.
Isn’t that fantastic?
Meg and her husband Tim are parents to a 21 year old non-OI son, a 17 year old OI daughter, and a 15 year old non-OI son. Meg also works at a marketing firm, and teaches piano lessons. And she doesn’t even drink!
Say a Prayer
In Tennessee right now, a beautiful little girl is in surgery and her parents are hanging out in a waiting room. They spent last night with intake forms, blood tests, consultations with anesthesiologists, visits from residents, briefer visits from doctors, some games with a recreation therapist, prepping the bed for Mom or Dad or both to stay the night. They probably had a huge dinner of whatever the girl desired, a hot comfy bath and change into warm pajamas, and they may even have stayed up late watching goofy girl movies. They filled their evening as much as they could, all trying not to think about today.
Most parents of OI children have been down this surgery road way more often than they care to recount. It’s an arduous path, a slog through mud, and it doesn’t end when the surgery is over. The recovery period is pain and boredom for the child, hard work for the parents. Just the thought of it elicits dread, a flood of questions, and a desperate need for sleep, or at least some real help. What they really want is for this surgery not to happen at all, but they’ve been over it hundreds of times, and surgery is truly what’s best for their girl. Hard, yes, but not as hard as the consequences of not having surgery now. OI is cruel in that way; orthopedic problems *don’t* get better with time, they get worse.
So about an hour ago, they headed to surgery. They had a few quiet moments with their child in pre-op, everyone holding hands, a whispered prayer fervently lifted, and then the rush of fear and panic when the wonderful kind nurses gently steered their child into the surgical suite. For a moment, the parents stayed where the child’s bed once was, the space suddenly cavernous, watching for the very last moment the child’s ear or finger or toe was visible through the doors. And then silence.
Into the surgery waiting room they go. They’ll find the least uncomfortable chairs possible in proximity to the phone or the intercom or the door where the nurse will come to update them on their little girl’s progress. They may watch TV or read a book or work on knitting or crossword puzzles, but they won’t really pay attention. Their minds will jump like water on a hot skittle, and they’ll check the time to often the clock will stubbornly start running backwards. Somebody will turn on Judge Judy, which strains the patience of intelligent people on a good day. Today, however, such input is an electric current of annoyance. There are important things going on in the world—somebody shut that off!
Hours are as long as days when you’re waiting for your child in surgery. Mom and Dad will take turns being calm, lean on each other, crack an inappropriate joke, pace, sneak a peek between the doors into the surgery nursing station, run for coffee. But mostly they’ll hold hands and hope. And pray.
OI families may have been through this whole routine dozens of times, but that doesn’t make it any easier. Knowing the steps doesn’t mean they’re painless or fun. And when it’s your child in that surgical room, the best surgeon or staff or anesthesiologist or nurses in the world can’t take away your fear.
So today, just for a moment, say a prayer for the beautiful little girl in Tennessee, and for her parents. Send warm thoughts, encouragement, love, support. Surround this family with every ounce of light you have to spare. Just for a moment.
Say a prayer.
Meg is an OI mom whose daughter has had her fair share of surgeries. Meg and her husband Tim are parents to a 21 year old non-OI son, a 17 year old OI daughter, and a 15 year old non-OI son. Meg also works at a marketing firm, and teaches piano lessons. And she doesn’t even drink!
My daughter rolls out of school, pushed along by her younger sibling, a stepbrother a year and a half younger. He’s 6’2″, slender, wears mostly black clothes, and sports an 8″ red mohawk. They make an eye-catching pair, a tiny young woman floating along in a super-light chair while he clomps next to her in big chunky black boots, wiry, stretched thin, chains dangling from his belt.
Neither of them notices the disparity. They’re laughing, almost always laughing. He makes her laugh so hard her face opens wide, as though the laugh cannot be contained any longer and must come out. Their motion is fueled by laughter.
People have mentioned their relationship to me; strangers, parents of their friends, school personnel. They think it’s sweet that this scary-looking teenager is so kind and solicitous to “the little girl in the wheelchair.” Ugh. They don’t know that the kindness goes both ways. In times of uncertainty, she’s been his anchor. When she’s been sad or lonely, he brings her lightness, laughter. They both give support and encouragement, they both get someone to turn to, someone who lives in their world, someone who isn’t a grownup.
Their relationship started 12 years ago, when my husband and I started dating. Our three kids were thrown into an instant sibling relationship, add water and stir, and the blend didn’t always work. But when my stepson came to live with us almost a year ago, my daughter suddenly had a close sibling relationship. My older son has always done his own thing, independent, separate even from his biological sister, and now he’s away at college, so it’s the two of them.
I worried for years that my girl would be isolated, with no one to really see her, see beyond the condition. I’ve watched, trying not to hope, as she made friends at different stages over the years. Some friends have lasted, some haven’t. She once told me that high school isn’t about finding a husband, it’s about finding the bridesmaids. I can see a couple of her friends standing up with her at her wedding.
But this sibling relationship is different. I know I shouldn’t be surprised that they’re close. They are, after all, siblings, and have been in each others’ lives since they were four and five years old. When they were younger, these two didn’t bond at all, so different were their interests and personalities. Even now, these two have little in common. He’s into punk, speed metal, jazz, and extreme fashion choices. She prefers “Glee” and dresses conservatively. He is an artist, exploring dark themes in acrylics and ink; she is a talented singer and writer, always watching for an opportunity to help someone. They share no classes or friends or hobbies. But they’ve each been through a lot of difficult situations, and the fact that they’ve found each other and lean on each other is a gift.
And yet they bond. They talk for hours over “homework”, which turns daily into a giggle fest or a sock-throwing battle or a You-Tube video safari, throwing them into deeper fits of laughter. They break the “no-texting-after-9-pm” rule by texting to each other from adjacent rooms, late into the night. They think we don’t know, but we have known for months. I wonder what more they could possibly have to talk about, but I don’t take any steps to stop them. They each have close friends and people they hang out with, but these two end up comparing notes at the end of every day, checking in with each other, seeing what the world looks like from a different perspective.
They have each other. She sees more than his wild hair and don’t-come-any-closer clothes. He sees more than the wheelchair and fragile bones. He sees HER, she sees HIM. It couldn’t be simpler.
Meg is mom to three kids, one with osteogenesis imperfecta. She’s married to a wonderful guy.
On Friday, I had that abrupt reminder that my daughter has a serious disability. We’ve gone for a long time without a fracture or surgery, so aside from my worry about her nagging cough (do all OI moms immediately see the word “pneumonia” when their OI child coughs?) I haven’t had cause to think in depth about OI or my daughter’s condition in months. Maybe years.
Friday was a day off of school for my kids. They had just finished a grueling three days of finals, so they slept in and hung around the house while I went to work. Around 11 a.m., my daughter called me in tears, saying she had a horrible headache that medicine was not improving. Also, and this was the part that sent my heart plummeting to my feet, she had neck pain.
Now, despite the fact that I have a 17 year old with type 3-4 OI, I consider myself a novice OI parent. I spent the first few years of her life absolutely terrified and depressed, certain she could die at any moment. I had access to two other OI families, one 40 miles away, the other 100+ miles away, and while I had the legitimate excuse of being a de facto single mother (my husband was a professional musician) *and* being the sole support of my family of four, the truth is that I kept my distance. I resisted wading knee-deep into the pool of “what ifs” that accompany OI. I had a daughter I loved so much it hurt, and to think of what might happen in the future to cause her pain was more than I could bear. I’m not the kind of mother to keep meticulous count of every fracture/surgery/crack my daughter endured, or track the degree of bowing in her limbs, or obsess over every bump and bruise. So I have heard about basilar invagination, had read up on what it was, some years ago but I didn’t apply what I knew to anticipating problems with my own child. I put basilar invagination into the “this happens to some people with OI but won’t happen to my child” category and forgot it.
So on Friday, I heard “neck pain plus headache plus vomiting” and I thought “basilar invagination”. My warrior-mother was triggered and I flew into action. I called the family doctor and the ortho, trying to get some kind of painkiller to replace the now-off-the-market Darvocet, and went home to tend to my girl. I soon found that her symptoms did not mimic B/I, and that aside from neck pain, this was most likely a simple (but quite painful) migraine. Once she was adequately dosed, had ice packs strategically applied, and was laying quietly in a dark room, her symptoms abated.
I returned to work , where my heart raced for the rest of the afternoon.
In trying to explain my absence to my co-workers, I found I was at a loss. Thus far in my employment, I’ve had no urgent calls about my daughter, no other need to leave work and take care of her despite having told them that it was likely I would. I suddenly felt that I had no credibility. In five months, I haven’t once received “The Call”. I have taken some days off for appointments, but as far as this new job is concerned, any needs my daughter has are a figment of my imagination. My casual attitude about my daughter’s disorder has been interpreted to mean that there is no problem. I can’t say that I blame them for that.
There was a day when my daughter’s day-to-day medical status was precarious, when I was called into school a couple of days a week, when she had pain or exhaustion or just felt achy and needed to come home. She was so young ten that I had to stay with her and couldn’t return to work. This was why I stopped working outside the home, because I was often and unpredictably absent. Since middle school, though, there hasn’t been much need for me. Once we got past bi-weekly meetings with tyrannical school officials, recalcitrant “aides” who made excuses for not doing the job they were being paid to do, and Paula Blart the Hall Monitor who wanted to make an example out of anyone who DARED to have exceptions made, I’ve been benched.
I’m not complaining. I am happy that the prediction that adolescence brings a decrease in fractures is true, that things really do get better. But it’s a good bet that I wouldn’t have been nearly so freaked out by Friday’s painful episode had it happened, say, five years ago. Like a loud clap in the middle of the night, I was startled into wakefulness. To look back on what we’ve been through is sobering, and then heartening. My girl has had a life full of physical pain, and yet here she is being a regular mouthy teenage girl. People comment on how well-adjusted she is, but maybe it’s simply that I’ve imbued her with my own forgetfulness.
I am relieved this was just a scare. In the last few hours of work on Friday, all kinds of extreme scenarios flitted through my head. But this anxiety soon passed, and my daughter was quickly back to her routine of meeting friends for coffee, going out to the movies, and hanging around in her pajamas all weekend long. Yes, she has OI, but most days it’s relegated to the back seat, a footnote on who she is. She will always deal with fractures and wheelchairs and being short and not being able to reach things. That will never change, but she has adapted in amazing ways. I’m sure that’s part of our ignorance of the effect of OI in our lives as well, the fact that she just does what needs to be done without comment or complaint or much need for help, anymore.
OI has faded into the background. I’m going to take a moment to marvel at that.
PS–I have made an appointment with her ortho just to take a look. It can’t hurt.
It’s the LAW
What follows is a rant I’m sure most people with disabilities and/or disabled children have done at least once in their lives, but I just have to say it publicly. Once with a big audience. Just once so that all 200 people I know (according to Facebook) will hear me good and loud.
Handicapped parking spots are for use by people with legal plates/placards ONLY. Said persons must abide by the rules set forth by the state of issuance. All other use is a violation of the law. Period.
As a mother to a child in a wheelchair, I’ve had a handicapped placard for 16 years. I use it when my daughter is being transported, so I’m either taking her somewhere or I’m going to pick her up. The number of times I have found people illegally parked in handicapped spots can’t even be counted, and the WORST violators occur in school parking lots. When my daughter was in elementary school, a man driving a truck parked his vehicle perpendicular to the lines, blocking not just one handicapped spot but two. He hopped from the truck and started walking into the school.
“Sir,” I said, “do you know you’re illegally parked?”
“Yeah,” he snarled back over his shoulder, “so hit me!”
Oh, would that I could without consequences.
Most of these violators think it’s no big deal to sit in the handicapped spot waiting to pick up their children. They see two or three other spots and think it’s no big deal to just take ONE. So their cute little kids come skipping out of school, hop into the minivan completely oblivious to the fact that their parents have just used them as an excuse to break the law. Some of these violators have actually told me that they’re only using them now because nobody else is using them…to which I usually reply “how do you know someone isn’t GOING to need one? How do you know someone isn’t coming along who needs one?”
They usually say they’ll move when somebody else needs one. But again, how will they know? Will the person with a disability–for which they need a handicapped parking spot because they have trouble with mobility–just jump out of their car, walk over to the violator, knock on the window and gently ask them to move? And then walk back to their cars and wait patiently? Is that really how the violators think they will know when someone needs the spot? Or will they suddenly get a premonition? Will 1,000 doves alight on their car? Maybe a rainbow will appear! Or the BAT SIGNAL!
I have a sign of my own I’d like to share with them…
My absolutely favorite violator, however, is the principal at my daughter’s high school.
Now, let’s look at this step by step.
He works in a school full of teenagers lying in wait to catch adults being screw-ups, hypocrites, liars. Teenagers live for the moment when they can prove that adults break the rules too, so why should ADULTS tell teenagers what to do?
He is the leader of all of the adults in the school, adults who are expected to be role models as part of their jobs.
He is in charge of a school where they teach DRIVER’S EDUCATION, a class that’s supposed to teach teenagers the rules of the road. I’m pretty sure the textbook for that class is still called “The Rules of the Road.”
When my daughter started there two years ago, this principal parked in the handicapped spot closest to the main entrance. He’d been doing this for the previous four years as well–I noticed when picking up my older son. The sign for this handicapped spot had been removed–no question about that, since there was still a hole in the ground where it belonged–which meant that the police couldn’t ticket a person parking in that spot. Gee, I wonder who removed the sign? During the endless meetings in preparation for her first day of high school, drop-off and pick-up locations were discussed. Turns out the main entrance is the best spot, since only one other entrance in the school has an accessible door, and parking at that entrance is problematic. The school suggested that my daughter have her own parking spot for all four years, a kind and gracious offer. I asked that they designate one of the handicapped spots outside the main entrance for my daughter: they chose to assign the one the principal has been using for years. They put up a “no parking” sign and called it my daughter’s.
Now the principal only uses it when he thinks we’re not going to be using it. Apparently, he has the same powers of precognition that other violators have. I have asked him directly to stop parking there. I have asked him obliquely to stop parking there. I have asked his boss (the superintendent) to tell him to stop parking there. The response to my last request was a phone call in which he vigorously defended his use of the spot, using the same verbiage other violators use; “I only use it when no one else is using it”, “I’ll only be there a minute”. He often parks NEXT to the handicapped spot, in the stripes designed to allow a lift or other apparatus next to the car. When called on this, he further defends himself, saying “I left plenty of room for your daughter to get in and out of the car.”
This may have been the final straw for me.
How on earth does that…man…think he has ANY idea what my daughter needs? What makes him think HE knows how much room my daughter needs to get in/out of a car? Every time a non-disabled/non-associated-with-disabled-person gave me unsolicited advice on where I should park and how, I can barely contain my anger. Such presumption, such arrogance is stunning. I cannot even imagine approaching a stranger with a disability and giving them advice on how they should handle their physical environment. And yet it has happened to me for many years. I’d be willing to bet it’s happened to everyone else who lives with a disability.
I know this is tilting at windmills. There will always be people who don’t give a rat’s *ss about anybody but themselves, and don’t care if they’re breaking the law, and REALLY don’t care if they’re making life more difficult for people with disabilities. All they care about is what’s convenient for them, right this minute.
Calling the police is useless. By the time they arrive, the violator is gone. Blocking the violator into the spot until the police arrive is too confrontational in the current social environment, where “2nd Amendment remedies” define the comfort zone of too many people. With my child in the car, I will not walk into such danger. I’ve taken pictures and sent them to the police, I’ve asked the police to monitor the parking lots at drop off/pickup times, I’ve left notes on cars, I’ve had polite face-to-face conversations with violators. Nothing changes.
For those of you reading who do not live with a disability, if you’ve gotten this far, I thank you. And if you’ve gotten this far, I suspect you’re open to the idea of being considerate of other people. If you have parked in a handicapped spot illegally before, please don’t do it again. Ever. Because if you think it’s hard for YOU to get in and out of a building in a hurry, just think of how much harder it is for someone with a disability. Everything you take for granted about leaving your house is 20 times harder for someone with a disability.
At LEAST let them have the good parking spots.
Meg is mother to three–one grown, two teenaged–and wife to one very patient man who knows just when to put his arms around her to keep her from flailing at stupidity.
Becoming an OI Dad
Reading a book to a five year old
My daughter’s father is my ex-husband. When I left him 12 years ago, she was five years old, and very emotionally attached to her father. She was too young to understand what was going on, too young to see the bad situation we were in, far too young for me to explain to her the complicated necessity of starting a life without him.
For many years, I have bitten back the urge to tell her the whole story, all the ugly details that contributed to the mass of forces pushing me to this decision. There’s much she knows now, but much more she’ll never know. But the core of the reasons for leaving, the reason that pertains to her, is that my ex- resisted dealing with her disability. (This is awkward because I don’t want to be unkind, and this is not a hate-fest.) From the time she was born, all he could express was sorrow, regret, pity, an inertia and disconnection that left her completely in my hands. She was truly physically and philosophically in my hands, since he never picked her up to hold her once in those five years. Doctor visits, school planning meetings, insurance negotiations, child care decisions, church, transportation, adaptive equipment, therapy–all of it was my responsibility. Along with working full-time. He never had a full-time job the entire time we were together.
So I left.
I’ve married again. Nine years ago this April I married Mr. Currell, who has known me since I was 13 years old. We dated in high school. Knowing him so long helped, but I was very nervous about bringing this stranger into my daughter’s life. He may know me, but what did he know about OI? What did he know about caring for a disabled person? What could he possibly know about being a parent to a special needs child? She was so tiny, so vulnerable, so sad and confused by losing her father. This interaction had to be managed very carefully.
The first moment anyone meets my daughter, my eyes are on her. When she was really young, she clung to me constantly, burying her face in my neck when anyone spoke to her. Rare was the individual who could draw her out of her shell; one preschool teacher touched her heart, one babysitter/aide, one family friend. When they connected with her, her face opened like a flower blooming suddenly in the sun, all light and energy and joy. She loved them instantly for making her laugh, for making her feel safe.
But most people scared her. She shied away from looking at anyone directly, preferring the safety of my arms.
Bringing into her life this man I knew but didn’t know was frightening for me. I knew this man was not just a dalliance, someone I’d have a few laughs with. He was, as they say, a “keeper”, someone about whom I was serious, someone who was determined to make a life together. There was much at stake.
I arranged for him to meet the kids at our house on the Friday night before our big Saturday date. Mr. Currell solemnly shook hands with my then-9-yr-old son, then turned to my daughter and introduced himself. She was helping me make cookies, and they talked for a little while. He made her giggle, which I saw as a good sign. Then my son challenged him to a game of chess, and we wiled away the evening.
The first thing Mr. Currell asked when the kids were out of earshot was how he would go about picking my daughter up. No one outside of the paid para-aide had ever asked that, not my friends, not my family. Not her father. When we all went out the next day to an event I had to cover for my newspaper, Mr. Currell was all-hands-on-deck, handling the wheelchair like a pro, finding accessible entrances, hanging out with the kids while I conducted the interviews. And once, under my watchful eye, he picked her up.
If you’re an OI mom or dad, you know exactly how nerve-wracking it is to have an outsider pick up your little one. Your heart is in your throat, you’re ready to pounce the moment a single limb is unsupported, you watch the lifter’s body mechanics like a drill-sergeant PT.
Mr. Currell took his time, respectful of my daughter’s comfort and security, and safely transferred her from one seat to another. He wasn’t nervous, he wasn’t concerned about himself in the least. His only concern was that she was comfortable.
And that was the end of any internal negotiations I had left. He was in.
Since that day, Mr. Currell has grown into the role of OI dad. He has transferred, repositioned, assisted in seating decisions, sat in on PT consults/FAPs/IEPs, doctor visits, IV sticks, meetings with anesthetists. He learned all the legal verbiage, the medical language, and the lexicon of the special needs parent. He learned how to lift her when she was broken, and then he learned how to splint. He helped me manage the worst fractures (I wouldn’t step aside on those) when she was screaming in pain. He arranged to work from home and be my childcare provider when I lost the only reliable caregiver I could find, and for almost a year, he was Mr. Mom to children he wasn’t even legally responsible for.
In that time, he became their Dad.
But the moment he became on OI Dad, the truly transformational moment, was when my daughter had her first surgery. It wasn’t even an orthopedic surgery. Leading up to the surgery, he was calm, dedicated, constant, while I was jumpy and frightened. In the pre-op room, he joked, smiled, stroked my back and held my hand as I struggled to maintain composure. He kissed my daughter’s nose as she was wheeled out of the room, and then we waited.
After the four hour surgery, (my four hour torture session in the waiting room) he was the first one by her side. He saw her puke on the anesthetist (for which she groggily apologized, sending relieved laughter around the room), and came out with tears in his eyes to where I was talking with her surgeon. For the rest of that hospital stay, he didn’t leave my side–or hers–until he was kicked out by hospital staff. And that has been true for every single surgery since that day. And every fracture. And every parent-teacher conference.
There’s nothing new in the statement that biology doesn’t make a man a father. But becoming an OI parent is a rare and frightening thing to do. To be an OI parent takes a certain amount of steel, of sheer willpower, a fortitude in the face of unimaginable pain that allows you to continue doing your job as a parent while you watch your child suffering. That’s not a skill that comes naturally to many people, certainly not (forgive me) to most men, who crumple at the sight of a little girl’s tears.
But Mr. Currell is not most men. He is a rare and steely individual, who brings strength and perseverance to every task he decides to undertake. I’ve seen him do some amazing things, but the most inspiring thing he has ever done, right before my eyes, was to become an OI Dad.
My daughter wanted to wear black for Valentine’s Day. I did the same thing for years, even when I was married to my first husband. I understand her reasoning–that participating as a single person in a holiday that celebrates paired couples is too painful–but my thoughts go beyond these awful teenage years to later, to college, adulthood. Someday, someone will see how unbelievably beautiful she is. Right now she can’t see it, but they will.
When I say my daughter’s beautiful, I recognize that I am biased. My children are, as a matter of fact, the most beautiful children to have ever existed on the face of the earth. But I DO have independent confirmation; we’ve been approached out of the blue, on the street, by people telling us how beautiful she is, especially in the last few years. Strangers have walked up to us and said “I’m sorry, I have to tell you, your daughter is GORGEOUS.” I am pretty darned sure that never happened to MY parents. When she was a baby, she was so tiny and delicate that people said she looked like a porcelain doll. So while motherly pride plays a part, her beauty is not really in question.
I have always been boy-crazy. From the age of 4 when I wanted to be a garbage-truck driver so I could always be around Joey Oswalt, who wanted to be a garbage man, my raison d’etre has always been boys. But I recognize that my daughter isn’t me, she isn’t just a replica of me. She is very much her own person–with a healthy dose of my own mother thrown in–and have a very definite mind of her own. She told me once that she had no expectation of finding lasting love in high school. She said “high school isn’t for finding the groom. High school is for finding the bridesmaids.”
And yet, even with this mature perspective on her world, she still planned to wear black today. Her best friend talked her out of it; if my daughter didn’t wear red, then the BFF wouldn’t give her the valentine she’d gotten for her. Yep, the chocolate bribe. Works every time.
I know my daughter feels her aloneness acutely. She doesn’t express it to me. I can see her putting on a brave face, feigning diffidence, but I know this troubles her. I know there’s one guy in particular who would do anything for her, but she’s not interested. She thinks he’s weird. I have to bite my tongue to keep myself from telling her that’s exactly what I thought about Mr. Currell when I first met him. But aside from the attention she’s gotten, she hasn’t been in a relationship.
Maybe this worries me more than it worries her. Maybe because I have the boy-crazy thing I am more attuned to this lack than she is. I think as a result of her more balanced attitude, she’s a much better student than I ever was; she spends hours studying and preparing for classes, and has accomplished better grades than I did. I spent most of my time pining for one guy or another, and didn’t discover the joys of straight-As until I was pregnant with *her*. And I’ve heard that high school is toughest for kids with OI exactly because of the overwhelming emphasis on conformity. High school was tough for me for the same reason; I have never been anyone’s idea of “normal”. But she’s so much stronger than I am, and I have a feeling that she’s let a lot of things slide off her back that would have been devastating to me. For this reason and many others, I’m SO glad she’s not a carbon copy of me.
I’ve always worried about how difficult finding romance and love will be for my daughter. I’ve met enough married adults with OI to calm those fears almost completely. Valentine’s Day is a reminder of that old anxiety, the fear of my daughter not having the typical experiences, the regular milestones that most people encounter. But then I remind myself that the person who eventually falls for my daughter will be exactly the kind of person she needs; non-conformist, independent, strong, and something of a free spirit. They have to be stronger than the small minds around them, and that kind of person isn’t typically found in high school. So while Valentine’s Day in high school may be a special kind of torture, I do have faith that someday, the heart of some brave young person will connect with the heart of my brave young girl.
But I’m sure glad the reminder of Valentine’s Day is over for this year.
Meg Currell is married to the boy she dated in high school. He eventually outgrew the peer pressure and decided being with someone not like other girls was pretty cool. Together they are raising their own flock of independent thinkers.
She Proved me Wrong. Again.
My daughter amazes me.
Just when I’m overwhelmed with anxiety over finding the right school for her, with waking nightmares of her falling out of her bed at college and having no one to help her, when I’ve resigned myself to the fact that I will have to live in her college town without her knowledge—then she brings me up short.
This morning, I attended her meeting about the upcoming peer leadership retreat. It was an inauspicious beginning, as she had not done any research on possible alternate activities as she had said she would. I hustled around the house getting myself ready, making three lunches, and trying to do some research in time for the 7 a.m. meeting. By the time we got there, I was seriously frustrated and convinced the meeting would be a bust, that we were walking into a battle completely unarmed.
I decided to sit back and watch and listen. Cowardly, I know, but my fear was that I would blast a four-foot hole in the middle of the conference table with my righteous indignation. It would have done way more harm than good for me to say anything at the outset of the meeting. I plastered on my pleasant business face and listened to the conversation.
My daughter started the discussion by announcing that she had been accepted into peer leadership. The advisor piped up and said he was very excited that she would be joining them, that they thought she’d be an excellent leader. Then my daughter started the meeting strong, stating the reason for our gathering, her concerns about accessibility at the retreat. She stated that she knew what she could do, and what she couldn’t do, and she also knew that with enough planning, she could figure out a way to do just about everything the rest of the group was doing. Without stating it outright, she established that sitting on the sidelines and cheering for her teammates was not acceptable. She set the terms of her participation firmly and politely.
So there I was, nervous that she would be lost, unsure, unclear on what she wanted to accomplish. But she swept into the meeting, tapped her hands on the table and ruled the room. It was HER meeting. The discussion went back and forth between her and the program advisor, with a few nuggets thrown in by the PT and the special education coordinator. I did ask a clarifying question or two, and so did my husband, but we were adjuncts to this party, an unnecessary safety net. This girl was flying, sure of every move. And we watched in awe.
The question at hand was resolved (yes, young lady, you will have months of advance detail about the activities, starting TODAY!) and the discussion wound to a close.
My daughter looked around the table and said “Well, thank you all for coming. I appreciate you taking time out of your day for this, and I look forward to talking with you again as we get closer to the date of the retreat.”
A laugh went around the table, and the peer leader advisor said “THIS is why we wanted her in peer leadership.”
I don’t think I could have been more proud.
So while this doesn’t mean she won’t ever fracture without someone there to help her, and it doesn’t mean that I’ll sleep soundly for the rest of my life, and it doesn’t mean I won’t be moving to my daughter’s college town (sorry, kid), it DOES mean that my daughter has some major skills. She showed maturity, confidence, intelligence, patience, decisiveness, and understanding.
That’s some kind of 17 year old girl.
Meg Currell is an extremely proud mother of a 17 year old daughter. There are other kids around here too. And a big furry husband.
Let Me Tell You A Story
I started a full time job last fall. It’s taken me a while to get to know the people there, but now we’re getting to know each other better, and the subject of my daughter’s disability is coming up more frequently. Whenever I tell new people that my daughter’s in a wheelchair, I get the same response. You OI people know what I’m talking about; the script, the questions that everyone asks when they hear The News. Except for the pity on the faces of the people I’m talking to, I don’t mind telling the story. It’s part of my life, part of my daughter’s life, and gives me an opportunity to remember my daughter as a baby.
So let me tell you a story.
My daughter has a bone disorder called Osteogenesis Imperfecta. She has a severe form of it, though there are worse forms. She uses a wheelchair for getting around. Yes, she can walk with a walker, but she’s very small, and walking’s not practical in the dangerous hallways of her crowded high school. She only comes up to the thigh on most people anyway. So she uses a manual chair or a power chair, when it’s not broken.
She was born with this condition. I knew about it a couple of hours after she was born. No, there was no indication of the condition before she was born, even though I had two ultrasounds when I was pregnant with her. Oh, she was beautiful even then, such a perfect, delicate little face. So different from her brother, who was rugged even as a baby. She had long, gently tapered fingers, a beautiful mouth and a petite nose turned slightly up at the end. Those prenatal pictures made me fall madly in love with her.
When she was born, she wasn’t very responsive to some of those pesky APGAR tests. The nurses told me she had “bad muscle tone”, but that it would pick up in a few hours. They kept her in the nursery. A long time. They brought her in for me to hold, all swaddled and a little swollen. She looked exhausted. I had to put her back in the bassinet for them to wheel out of the room so they could do more tests. I waited.
The doctor came in and told me that he thought she might have a problem. He said they’d detected a broken forearm, which isn’t uncommon in newborns. He said he also heard a “pop” when he did the hip displacement test. He had broken both her femurs with that test. I felt bad for him later. He ordered a full set of x-rays on my baby, and this revealed dozens of fractures, some fresh, some already healing. She had broken bones in my womb.
He suspected she had one of two disorders: Hypophastasia or Osteogenesis Imperfecta. He was pretty sure it was OI. He was right. He brought in the local orthopaedic doctor, who confirmed the clinical diagnosis of OI based on the large fontanel she sported. I worried over that fontanel for months, you know. I was terrified her skull would never fuse together and protect her brain. But I would stroke her scalp for hours, protecting her with my fingers, with my love.
After the doctor told me the diagnosis, he said he was going to have her airlifted to a hospital in the closest big city. They brought me into the nursery, where she laid unclothed, now that they realized swaddling her might cause more fractures. She was in an incubator of sorts, laying alone, uncomforted, in pain. Poor little tiny feet still had ink on them, the Mel Sharples hat askew on her beautiful little head. I couldn’t pick her up.
They handed her to me on a pillow. I held her, now distanced from touching my daughter, from giving her the comfort she needed by the gown they made me wear–how silly to make me wear a gown, when I’d just held her against my skin and she’d survived the experience. But now I was a threat to her, a danger. I held her as close as I could, touched her face, and had to put her back in the incubator so she could get on a helicopter with (caring, dedicated, medical professional) strangers and fly 200 miles away from me.
They let me go home immediately afterward. I didn’t have a baby anymore, so I didn’t belong in the maternity ward. I don’t remember much about the rest of the night. My sister, who had started on her way to come visit as soon as I let her know I was in labor, arrived sometime that evening, and held me as I cried myself to sleep.
It was Christmas time. The day before she was born, I had gone on a Christmas frenzy, buying and putting up the Christmas tree, taking my 4 year old son to see A Christmas Carol performed live, and walking him to the nighttime Christmas parade. At some point, I put the Christmas lights on the tree, which stood leaning against the corner in the only receptacle I could find that was large enough to hold it, a bucket with cinder blocks shoved up against the sides. A Christmas tree adorned only with lights greeted me in the morning, a stark symbol of my new reality.
The next day, my sister, our sons and I drove to the big city. My husband (at the time) stayed home to finish his exams, and would join us later in the week. My body had given over to shock, exhaustion, mourning. The three hour drive felt like years, felt like minutes. To get to my daughter’s side was all I knew.
I flew into the hospital, not caring if I walked into traffic, cut somebody off, bumped into someone. The NICU received me, showed me how to scrub up with those painful brushes, to remove my jewelry and pull back my hair. I had to put on a gown again, yellow crisp paper-like and antithetical to holding a baby.
I found my tiny girl lying on a bed under a warming lamp, completely knocked out with narcotics, wrapped from hip to knee on both legs in soft gauze. I wondered if she was going to spend the rest of her life doped up on pain meds. The bed was tilted slightly, I forget now why, and she would slide occasionally toward the foot. We learned to scoot her gently back into position. The nurses handed my daughter to me on a pillow again, all of the monitor leads taped to the edge of the pillow. The first time, it was difficult to balance this fragile baby and manage all those cords on a stiff pillow. We got better at it, though lifting her back into her crib I was reminded that I had just had a baby. My body hurt.
The neonatologist gave us some more detail about OI. His resident, a doctor with one of the worst bedside manners I’ve ever encountered, did more harm than good. The nurses were my teachers, my examples. I grew to love the smell of Purell, which was not yet out on the open market and was only used in settings like this. I thought it was magical that you could wash your hands without soap and water. In the NICU, I learned to hold my daughter safely (on a pillow), to nurse her, to sing to her. I finally got to put clothes on her, though not the footie pajamas I planned on since her femurs were broken. I put a snap-front jacket on her, gingerly dressing her as I would my most precious torn and tattered Raggedy Ann doll. These were the first OI clothes she wore, the first time we thought about ease of access and light layers for my sweaty girl. And I was so glad she was a girl and could wear skirts when she was broken. So ironic now, because she refuses to wear a skirt. Except for prom.
I couldn’t be with her all the time, since my son needed to be cared for also. I hated leaving her. I hated leaving him. After 10 days, they let me take her home. I was terrified to be without the nurses, without someone to help me move her, or watch her while I slept. But we took her home, driving 5 mph over every pothole and speed bump and train crossing. I still drive slower over bumps now, aware of every jostle of the car. I took her home and placed her, still in her carbed, oh-so-gently in her crib in her white-and-pink-painted room.
There is no history of OI in either of our families. OI is not a result of my having done or eaten or imbibed something while pregnant. I learned from the geneticist who did my daughter’s genetic testing, our form of OI is a spontaneous genetic mutation that occurred in the eggs that were created when *I* was conceived. It just happened.
My daughter doesn’t take pain meds very often. She wears whatever clothes she likes (if she can get it in her size). And that fontanel finally did close up on its own.
My daughter has OI.
Meg Currell is the proud mother of a truly beautiful 17 year old daughter who has OI, and a 21 year old son who does not. She’s also terribly proud of her 16 year old stepson, who loves her daughter like a sister.
Let Me Fall
Let me fall
Let me climb
There’s a moment when fear
And dreams must collide
“Let Me Fall” Written by Jim Corcoran & Benoit Jutras, lyrics by Guido Morra. Performed by Josh Groban.
I’ve pondered these lyrics over and over, so agonizingly accurate in their description of being an OI parent. This song is, to me, my daughter’s song, the cry of her heart, a demand placed on me to let her go, to let her fly.
But it’s not her fear that prevents her flight, it’s mine. (So let me fall/If I must fall/I won’t heed your warnings/I won’t hear them) As she’s gotten older, my restrictions have gotten looser, but I will always wonder if I’ve grasped too tightly, too close. Did I prevent her from seeing all of the world? Did I keep her cloistered, safe, preventing fractures at the cost of adventure? Would she have become this wondrous being sooner had I only let her go? (I will dance so freely/Holding on to no one)
She flies a lot these days, and I’m proud of her for that. Proud of my shy, timid baby finding her voice. Once so delicately beautiful in her fragility, she now radiates strength and solidity to the extent that I almost forget she has brittle bones. I have let her go some, at least marginally.
But my subconscious cannot completely let her go. I am haunted by fears I cannot express, fears that nibble at my waking hours and devour my quiet. This morning I awoke from a dream panicked, out of breath, crying. In the dream, my daughter was waiting for me on a set of wooden bleachers. She was sitting with a half dozen other people, all chatting, turned toward each other. I’d left her there while I attended to some business. When I came back, she stood up on the bleachers, which were not very stable, and fell forward injuring her neck, collapsing in a heap.
In the dream, I picked up my tiny fragile daughter, now limp, and clutched her to my body. Hours later, I am still distressed by the remembered feeling of her in my arms. When I transferred her this morning, I flashed painfully back to the dream, and had to force myself back into reality. She is fine, she is healthy and whole and happy.
Will I ever stop having these dreams? She plans to go far away to college, and I want her to go, I WANT her to chase her life wherever it will take her. (Let me fall/If I fall/There’s no reason/To miss this one chance/This perfect moment). But I fear that I will never quite rest comfortably, that in the back of my mind I will always be imagining her falling, that when she launches into flight, my anxious mother’s heart will only see the crash.
Just let me fall
Meg Currell is the sleep-deprived mother of three children, all of whom have been the subject of nightmares, but none have inspired more than her 17-year-old OI daughter.
When my daughter started high school three years ago, we worked closely with the high school’s disability coordinator, Ms. Smith, to outline and execute the transition from middle school to high school. Starting just after spring break of my daughter’s 8th grade year, Ms. Smith and I talked frequently, had several tours of the high school, and held meetings during which we hammered out the details of my daughter’s day to day function in the enormous world of high school education. Over several months, Ms. Smith became a trusted member of our team, someone I could rely upon to advocate for my daughter to the school, someone I could trust to be honest and forthcoming with me about the school’s position. She worked her fanny off, too, showing up early in the morning, working well into the evening, even calling me from home at 9 p.m. (with her young daughter audible in the background) to work out some final wrinkle in my daughter’s complex equation. Ms. Smith was a godsend, a blessing during a very stressful time in my daughter’s life.
At the end of my daughter’s freshman year, Ms. Smith, who had performed this same job for many years in another state, decided to leave the position.
I was devastated, certain that we’d lost the last compassionate, capable, savvy and experienced school representative we’d encounter in my daughter’s career. I spent the summer hoping against hope that Ms. Smith’s replacement would be equally competent. I knew that “stellar” would be too much to ask.
Ms. Jones took over for Ms. Smith in late August, two weeks before school started. The short ramp-up time added difficulty to the task of getting Ms. Jones up to speed on my daughter’s specific needs, which informed all of the requests we had made of the school. Ms. Jones objected to some of the requests, most notably that I would have some input into the decision about which aide would be hired, or at least get to train them before the school year started. As a result, the aide was not selected until the first day of school.
Most OI parents can tell you that an aide needs to be at least capable of lifting the person with OI safely, and will sometimes have to do transfers while the person with OI has a fracture, and may have to assist with toileting. The job of para-professional aide, therefore, requires considerable strength. In previous years, I have met with the prospective aides in the weeks before school started and outlined these considerations, and had them meet my daughter, practice transferring her and get an idea of the idiosyncrasies of working with a person with OI. I think it’s only fair to the prospective aides that they know what they’re getting into. If they aren’t totally on board, the child–my child–is the one who ultimately suffers.
Having the aide selection left until the first day of school can, therefore, be a pretty risky thing. After spending the last two weeks pestering Ms. Jones about the selection process, and reiterating to her the importance of training someone before school started, I had worked up a healthy head of steam by day one. Sure enough, the hired-at-the-last-possible-minute-aide was an all-around bad choice. She was never told what my daughter’s disorder was, or that she would be required to do any lifting, and, best of all, she weighed in at about 90 lbs soaking wet. She was barely taller than my daughter’s wheelchair. Her body trembled (fear? overtaxed?) when she tried to transfer my daughter. I did my best to show her what needed to be done, but the look of abject terror on her face when I explained the risk of fractures convinced me she was the wrong person for this job.
She was reassigned.
Decisions were made in this fashion at an uncomfortable but diminishing rate for the past two years. Ms. Jones and I have had some run-ins, the highlight of which was the time when she told me that I did not “understand” my role when I tried to request a meeting about my daughter’s fire evacuation plan. We eventually reached detente, and our recent meetings have been pleasant and productive. She has gained a fuller appreciation of my daughter’s needs, and I respect her ability to work within the system and still occasionally advocate for my daughter. I can work with her, I understand how she thinks and what it takes to get things done.
We’re headed into senior year, another transition period. My daughter’s stressed about this one, since she’ll be going away to college and be on her own for the very first time. I don’t know what this transition will entail, since the school she’s heading to is still a mystery. But I know there will be meetings. There are always meetings. So I was looking forward to getting through this year with at least some familiar faces, a basic understanding of this school’s personnel as I try to help my daughter negotiate the next four years of her life. But guess what?
Now Ms. Jones is leaving.
That process I went through two years ago to get Ms. Jones up to speed on my daughter’s needs? I get to do it all over again!
When my daughter was just a little girl, she was inordinately shy. She would bury her face in my neck, turning away from strangers, searching for my protective touch. She was fey, delicate, fragile, exquisitely fine-boned, and I hovered over her like she was a porcelain doll. And she was, in some ways; tiny, fair-skinned, rosy-cheeked, with large, luminous eyes and a tiny cupid-bow mouth, her heart-shaped face framed by winsome, whispy curls. She didn’t look like she had OI, she just looked tiny, and everyone wanted to touch her. I wouldn’t let them.
My daughter is on the “small-stature” side of the OI spectrum. Maybe it’s because she didn’t get pamidronate at a young enough age to improve her growth, maybe it’s because she didn’t get enough PT as a youngster, maybe it’s because she’s half Asian, or maybe it’s just her particular “brand” of OI, her mosaic, that makes her such a peanut. But she’s always been a tiny little thing, eliciting charmed reactions from people seeing her for the first time. “Oh, she’s just itty-bitty!” or “wow, she’s TINY” or “that’s YOUR daughter?”
My favorite so far is “she’s BEANTSY”. I just think that’s such a cute word. Beantsy.
We joke about her being pocket-sized, portable, small enough to fit in the overhead compartment, fun-sized, miniature, and, of course, shortie. She’s remarkable just within our family for her diminutive stature. I am 5’9″ tall. My husband is 6’2″. Her stepbrother is 6’1″, and my brothers are all over 6′, as are the men in my husband’s family. Her brother, however, may share some of her non-OI-short-genes…he’s only 5’3″. But people who meet me first and then meet my daughter cannot understand how someone as tall as I am begat someone so tiny. Many people have asked if she’s adopted.
Nope. She’s all mine.
Her shortness has not really concerned us much. But this summer, we’re experiencing something we haven’t before; my daughter is at home alone for hours at a time. I’m working full-time for the first summer in almost 10 years, her stepbrother is taking summer school, and my husband is working out of town. So there she is, in a big house with no ramps in or out, with only the accessibility we’ve worked into the existing structure to assist her through her day. And now I’m seeing that it’s not enough. While she can get around wherever she needs to on her own, because of her tininess, she can’t reach some of the things typical-height people take for granted. Only some shelves in the refrigerator/freezer are reachable for her, only the lower cabinets and drawers, only part of the counter, only a very small part of the pantry. The microwave is mounted above the stove. Take a minute to sort that one out in your head. She’s 3′ tall–in her wheelchair, she’s maybe 3’8″. Even standing in her wheelchair, she can’t reach the handle of the microwave. The coffeepot! Poor kid can’t even make herself a cup of coffee. Maybe that’s best. I’ve heard it stunts your growth.
We’ve done everything we can to put food where she can reach it, but there’s only so much we can store in the small area she can reach.
As she prepares to make the decision about where to go to college, these concerns weigh on her (and me) with increasing heft. We have considerable skill in arranging her room to suit her particular needs, and a cafeteria will provide the sustenance she requires, but what about after dorm life? What about when she lives on her own–even with roommates? Planning ahead is our best tool in dealing with any obstacles or impediments, but I fear we can’t see everything, we can’t anticipate every eventuality, and there might be dangerous consequences. I’ve awakened in a cold sweat, having imagined her trying to climb to reach the microwave and setting herself on fire. Or being unable to escape the house in an emergency. Or worse, much worse, being unable to defend herself from attack. It is in those moments I find myself rethinking my stance on gun control.
For now, we’re going to make an appointment with our wonderful childrens hospital, where they have an apartment facility in which teenagers with disabilities can gain the skills to adapt to their environment. It’s a transition program that I think she’s just about ready to step into. It will help to have experts–both in teaching life-skills and in my daughter–showing us the way. That should help ease her growing anxiety about leaving home, and, I hope, give her confidence to move in the direction her life is taking her.
In the meantime, I think I’ll embrace what her size has to offer; a compact package filled to bursting with this brilliant, effervescent being who still fits on her mother’s lap. Every time I wrap my arms around her, I remember the days when I thought that she would always be too fragile to hold. Now, when she climbs on my lap and I wrap my arms around her tiny frame (almost twice), I savor every moment she’s in my arms. I know these days won’t last much longer, when she wants to stay in the protection of my love, afraid the world might hurt her. It might. It will. And she’ll handle it.
But not quite yet.
Meg Currell is a mother to a sweet 17-year-old daughter with OI who sometimes still needs her mother.
A few months ago, I agonized over the prospect of my daughter attending another school-sponsored activity for which accessibility was but an afterthought. See the post, here. The group is headed to a retreat for team-building activities, including a low-ropes course and a high-ropes course, two enterprises geared toward able-bodied people. My husband had participated in the same group (at the same high school) many years ago, and his experience suggested that however well-meaning and inclusive the group is, my daughter would simply not be able to perform the tasks physically. Despite assurances from the group’s organizer, I had serious doubts.
When will I learn?
As we always do when faced with a new environment—and as I’m sure all OI families do whenever possible—my daughter and I visited the retreat center. Located in Lake Geneva, the center is a rugged former estate, set back in dense woods, with steep hills and root-invaded trails, narrow footpaths and fallen trees. Just getting my daughter out of the car and into her wheelchair presented a challenge for me, as both the car door and the wheelchair slid downhill during the transfer. My anxiety slid into foreboding.
And then we were introduced to Peter. He folded his exceedingly tall frame down to my daughter’s height and introduced himself as the director of school programs. He helped me load the wheelchair into the golf cart and we rambled down the hill, my arm holding my daughter safe against me, my other arm braced against the frame of the cart as we bounced over the terrain. As he drove, Peter described the focus of the program and gave detailed explanations of the activities. The low-ropes course involves getting a group of people through a given obstacle within specific parameters, and most of the items looked manageable for my daughter, with some assistance. And as he spoke, and as we pitched around the rocky terrain in a vehicle totally not designed for my daughter’s safety, my fears completely disappeared.
Every once in a while, you meet somebody who shows you that anything is possible, that barriers are only insurmountable if you fail to look for a solution, that the attitude you bring to any situation defines how you’ll come out of it. Peter exuded a strength of purpose that eclipsed my doubts. The intention, he showed me, is for the students to work together to find a solution, for the students to create a way together to get through the tasks set out for them. My daughter’s group will have to figure out how to go about doing it, but the program facilitator—an employee of Peter’s—will encourage them through the process, offering reminders. No student, he asserted, would be just sitting on the sidelines applauding.
My daughter and I looked at each other and beamed.
After years of “no”, the people who tell us “yes” or even just “let’s try” are remarkable. Miraculous, even. I cherish those moments we’re told “yes”, for they’re beautiful. The world opens up and allows my daughter a glimpse beyond what she has been allowed. Moments like these push her, even briefly, beyond fear of taking a risk, into potential, a rich well of possibility. It’s not just the thought of being able to do the high ropes course, but the opportunity to try whatever she wants without first having to convince someone she’s worthy of trying, that her spirit is just as valuable as protecting and nurturing as her bones are.
I will admit to having a mild heart attack at the thought of my less-than-three-foot-tall daughter aloft on the high ropes course, a daunting structure of a dozen or more trees and telephone poles supporting connecting ropes and ladders all suspended 20 feet above the ground in a clearing in the woods. This has already caused middle-of-the-night panic attacks. But I’m curiously okay with my daughter going on the zip line, provided she’s appropriately harnessed and caught softly at the end. There are definitely details to be worked out. I still have to convey this information to the school’s program director, and request additional assistance for the day of the retreat.
Nothing’s certain yet. But for now, we have the excitement of hope.
Meg Currell is mom to an adventurous 17 year old daughter with OI. She’s packing the “break bag” with extra splinting material and narcotics, just in case.
This coming weekend, my daughter and I are getting on a plane to a distant location to take her to camp. The destination is Camp Attitude in Foster, OR, an amazing camp facility designed for allowing kids with all kinds of special needs to have the same kinds of camp experiences that typical kids get to have. Last year, for the first time, Camp Attitude set aside one week just for kids with OI. Because the needs and strengths of people with OI are so very specific to each child, and can change in a flash with a single fracture, parents have to be on site for the whole week. Last year’s camp went so well, and was such a gift to families dealing with OI, the camp has decided to make this one OI week an annual event.
For the second year in a row, she gets to spend a week being around 50 or so other kids with OI. Some are just little guys, 4-5-6 years old, some are young teens. My daughter will be one of the oldest ones there, and this year she’s planning to be a buddy instead of just a camper. But this camp is the one place outside of Shriners Hospital where she feels comfortable, like just another kid. Where her brittle bone disorder doesn’t define who she is or what she does, where she doesn’t stick out or have to explain why she’s in a wheelchair or be patient with people who’ve never seen a little girl with bowed arms and legs.
And not just that! All of the things her older brother got to do as a Boy Scout–all the goofy crafts and singalongs and skits and laser tag and swimming and rafting and body-surfing the currents of the river…boating and tubing and using jet skis on the lake…riding horses and having campfires and sitting up all night in her best friend’s cabin laughing and telling stories–she gets to do these at camp! So besides just being another kid, she also gets to do some wicked cool things, things many kids never get to do.
Camp Attitude is a wonderful place. The cabins are all completely, utterly, fully accessible. there are extra-wide paved paths running between all of the cabins, and then from the cabins to the mess hall, and all around the property into the woods. There’s an accessible scenic overlook. And where they haven’t been able to build in accessibility, the camp staff miraculously, seamlessly, without hesitation or pause or concern for themselves, provides strong backs to carry these fragile children over any obstacles to get to the fun stuff. There is no obstacle that the staff cannot or will not overcome. The camp director’s attitude that a willing heart is the most powerful solution to all of life’s obstacles is evident in all of the staff members and in all of the volunteers.
Yes, this is a Christian camp. And if anyone ever needed evidence of Christ’s teachings, they need look no further than Camp Attitude. Service, humility, helping the least among us, sharing your gifts, selflessness and generosity are abundant. There is no sense of false benevolence, of doing good to make themselves feel better. They embody the idea of being at camp, but their attitude is what makes camp possible for many children. The Camp Attitude staff gives of their hearts, and it shows.
So next week, look for us in the woods of Oregon, floating down the river wearing life jackets, or screaming at the top of our lungs while the boat tows our tube in wild circles around the lake, or riding a docile horse through the clearing, or sailing high above the trees in the fully accessible hot air balloon basket. We’ll be the ones who look like everyone else, huge smiles on our faces, forgetting for six full days that we’ve ever heard of the term “osteogenesis imperfecta”.
Meg Currell is mother to an adventurous teenaged girl with OI and two boys without.
Holding her tiny, fragile child in her arms, a young mother dances to music. Love in her eyes, her child’s laughter ringing in the air, all that she sees is the smile on her son’s face. Round and round she swings him, lifting him in great swoops into the air, then back down, spinning, then back into the air, then down, cradling him against her. His giggles and chortles and shrieks make everyone around her smile. Her son is all she sees, and making him smile is all she knows.
I danced with my daughter that way when she was younger, though when she was 14 months old, like this little guy, I still held her more gingerly. This mom already knows his need for touch, for movement. She’s giving her child the opportunity to dance and feel free in a way he otherwise won’t get to do. She’s pouring her experiences into him, giving him a taste of what other babies experience through starting to walk and run. It’s not the same experience, but it’s what she can do for him, and it brings both of them joy.
This mom is years ahead of where I was when my daughter was 14 months old. She has brought him to camp, and while he’s too young to experience the big fun camp experiences like he will when he’s older, she’s getting the chance to interact with other OI moms and older OI children. That is the experience I wish I’d had when my daughter was younger. Being around a variety of other OI parents, seeing lots of OI kids being kids, not just pictures, which is all I had access to, would have been so helpful for me. A little overwhelming, but what a benefit.
Yeah, I’m a little jealous. But on a much bigger scale, I’m ecstatic for her. The door is open for her to see all the options available to her, to figure out what “experts” to talk to and who not to bother with, to put into perspective some of the things she fears about the future. And even after a full 24 hours at camp, she is happy, smiling, laughing with her son and chatting with other moms. Completely relaxed. Well into this OI-mom gig, she’s doing great.
She’s got this.
The following post began its life as an article published elsewhere, but it’s a good introduction into Camp Attitude, the wonderful camp where my daughter and I are spending the week with about 30 other OI families. We have been truly blessed to be included in this camp.
I have a daughter with a disability. She’s 17 now, and her life has been pretty normal, all things considered. Her disability is called Osteogenesis Imperfecta (OI), and is commonly called brittle bones. She’s very tiny and very fragile. Over her lifetime, she’s broken almost every bone in her body. Many fractures have happened spontaneously, with little or no impact or stress on the bone. She has experienced some impacts—like falling off of a table while strapped into her car seat—and didn’t break a bone. There is no predictability to the fractures, but they all hurt, and they all set her back physically.
As a result of her disability, people are generally very fearful around her. No one has ever wanted to be responsible for fracturing her. No one even wanted to be around when she fractured. The elementary schools she attended did an excellent job providing her services, but the middle school took a cowardly stance on pretty much everything we asked for. The person in charge of middle school special education seemed to take great pleasure in telling us “no.” Our main request in middle school was for appropriate physical education, but she didn’t have a single PE class in middle school. High school presented different challenges, different personnel, but continued resistance to PE. Educationally, she had every accommodation she needed. Physically, no one would touch her.
Outside of school we faced similar problems. In church, the Sunday school teacher left her sitting in a corner for the entire hour—facing a wall. After that, my daughter sat next to me in church, playing on a blanket on the floor. Finding childcare for her was nearly impossible. No nursing agency would staff the position, no daycare center would even consider taking her, and at-home babysitters wouldn’t take the chance. In nine years, I found one babysitter willing to do the job, and she was more than capable, but her university class schedule changed drastically one semester and she wasn’t available. That was the last babysitter we had. That was eight years ago.
We’ve heard a lot of “no”. Many variations have come across our path: “I’m not sure that’s our job” and “We’d better not” and “let’s look at it again next year” and “the school is not prepared to”. Would you be willing to send somebody out to talk to me about being a nurse for my daughter? No. Does your agency serve children with just physical disabilities? No. Can my daughter get a ride with you? No.
We’ve gotten used to it. I got to a point where I assumed any activity, at school or outside of school, would require at least a meeting in advance with everyone involved, a promise to provide all accessibility myself, and the assurance that no one will have to handle my daughter. I could have carried a copy of these terms around with me for handing out if the situation arose.
So when we heard about Camp Attitude’s OI Camp, my response was lukewarm. We knew we’d already be in Oregon the weekend before camp. My daughter had never been to camp before, and it was something she’d *always* wanted to do, but now she was 16 years old. Would she still enjoy this kind of thing? I saw a long week of a moping teenager that had to hang out with her mom because mom was providing all the accessibility. I could probably provide all these activities myself at home, since I was going to have to do all the work at camp anyway. I hesitated. I hemmed and hawed. And then I reluctantly signed her up, building a cross-country road trip into the plan so camp didn’t have to be the centerpiece of the summer, just in case camp was awful.
And yes, I tried to have a pre-camp meeting with the camp director, Louie Kazemier. I tried to explain how fragile my child was, and how she was a teenager, and how this was her first time at camp. His response was surprisingly casual. He didn’t seem at all concerned, which in turn made me concerned. Maybe he didn’t really grasp the gravity of my daughter’s condition. After I hung up, I shook my head, expecting an unpleasant week.
On July 11, we arrived at Camp Attitude for our first day at camp. We unloaded the car and wandered around a little, making contact with my daughter’s “buddies”, locating the dining hall, and wondering what would come next. Both my daughter and I were tense, pretty sure we’d have to essentially hold our breath the whole week and pretend to enjoy finger painting. We had dinner in the hall, listened to some lovely music, and then this guy got up to speak. He was introduced as Louie, and my first impression of him was that he reminded me of a better-looking Sammy Hagar, only less rough around the edges.
He told us the general rules, politely requested participation in dinner and the post-dinner entertainment, and spoke his awareness of the great fragility of our children. There would be a parents’ forum later on where all of us (understandably) over-protective OI parents could air our concerns.
And then he announced that we’d be doing laser tag that night. LASER TAG! Perfect! There is little chance for her to get hurt playing LASER TAG! My daughter found some people she already knew, some she just met, and they made a team. I watched. I took pictures. She started to relax, her smile becoming more genuine as she started picking off opponents. She laughed. I took more pictures. Then she went off with her buddies and I was left with nothing to do but play basketball with the guys.
Over the next few days, my daughter did crafts, stayed up late, played on the swings with her buddies and other campers and their buddies, played basketball, took long walks in the woods, and generally disappeared. All day. Occasionally she would come and find me for something (usually money) but most of the time I had *no* idea where she was. Kind of like when my older son went to camp years before.
Camp Attitude took a mid-week “lake day”, when we went down to Foster Lake for swimming and tubing. We plopped ourselves on the beach. She’d signed up for the boat ride and for “tubing”, which I figured would be a lazy ride in circles on a nicely-inflated-very-safely-and-gently-towed-tube. After baking in the sun for a few hours, we went to the dock for our turn on the boats.
And for the first time all week, I thought “Nuts, this isn’t going to work.” I couldn’t figure out how I was going to get my daughter into that boat. I’ve been on boats, but my husband has always helped me with the transfer. This was a choppy lake with a speedboat, not our little dinghy at the placid lake, and I didn’t see this ending well. I surveyed the dock, the boat, tried to get a handle on how to proceed, and then, with butterflies in my stomach, picked up my daughter. When I turned to the boat, I found Louie straddling the gap, one foot on the dock, one in the boat. Another man was holding the boat firm against the dock. Louie held out his arms and said “Here, give her to me.” After a moment’s hesitation, I turned over my tiny fragile girl to this man who was a complete stranger.
He didn’t hesitate or show any concern or fear. With great care and great strength, he turned and lifted my daughter safely into a seat on the boat. The man holding the boat didn’t let the shift in weight affect the position of the boat; it held firm. As if they had done this dozens of times with fragile tiny children, these men capably and simply placed my daughter in the boat. She was safe. For the better part of an hour, we charged around the lake, spray in our faces, towing an enormous tube holding four people urging us to go faster, screaming with glee. And then halfway into the lake, Louie stopped the engine, helped the tube riders onto the boat, and then it was our turn. Right there in the middle of the lake, we transferred my daughter from the boat onto the tube.
Like it was no big deal.
My daughter and two of her friends and I screamed and laughed and egged on the driver, going faster than I ever thought my daughter would get to go. I screamed with excitement, but also with the release of all the tension and worry and fear that I had held in reserve, just in case the camp staff’s attitude was false-confidence borne of ignorance. There was no ignorance, only a certainty that with a willing heart and a little effort and creative thinking, anything is possible.
I’d watched Louie and his staff all week interacting with the kids and with each other. With the relaxed demeanor of seasoned, experienced professionals, every single person at the camp did their job without a moment of panic, fear, anxiety, or wariness. The camp buddies were quickly just like family, the camp staff who were always preparing for *some* activity, the people hauling, cooking, serving, cleaning, driving, everyone was friendly and helpful and very matter-of-fact in everything they did. In the rest of my life, everyone we met was afraid of my child, and many stared in wonder at her mere existence. Here, we were in a sea of people with OI, and not a single non-OI person stared. The general attitude seemed to be “yes, we see you have a wheelchair. Now what would you like to do?”
And for the first time in my daughter’s life, we were greeted with an entire staff of people who simply said “yes”. Do you want to ride a horse? Yes, we’ll figure out how to make it safe for a little girl whose tiny short legs don’t reach to the side. Do you want to swim down the rapids in the river? Yes, we’ll figure out how to get down the muddy slope and over the slippery rocks so you can have some fun. Do you want to take a really fast ride on a tube? Yes, we’ll figure out how to get you from the boat into the tube—in mid-water, like everyone else—and then race around the lake. Do you want to ride on a swing? Yes, we’ll provide an accessible swing set so three kids in wheelchairs can swing at once. Do you want to ride in a hot-air balloon? Yes, we’ll bring in a fully-accessible hot-air balloon basket and experienced balloonist.
Yes. Every time we turned around, the answer was yes. My daughter was able to do almost every single typical camp activity we’ve heard of, WAY beyond crafts and macramé and leatherworking. She did the BIG ones, the scary ones, and she had a BLAST.
We’ve lived a whole life of “no.” Camp Attitude was the first place I’ve ever been where the first answer is always “Yes”, followed immediately by “I’ll show you how we’re going to make that happen.” And then, they do. Nothing is impossible at Camp Attitude. No one is too fragile or too severe or too medically involved. The staff at Camp Attitude, led fearlessly by the inimitable Louie Kazemier, lives their belief that everyone should have the chance to TRY, to DO, to ENJOY. Everyone should have a chance to turn away from the fear that hounds their everyday life and, with a little willing assistance, just be a kid.
This is more than a gift, more than just fun and excitement. She saw what was possible.
For a week, my daughter got to live in a world of “yes”.
She will never be the same.
We had a mother’s luncheon today.
Most of the moms at camp were there, including some of the staff members. We went around the table and shared our current struggles and what camp meant to us. The experienced camp moms went first, to give the newbies a chance to work through what they wanted to say. Halfway ’round the table, most of us in the room had tears streaming down our faces just from the rawness of the stories so thinly contained behind the veneer of strength. One mom’s child had just fractured days before, on the first day of camp, and had already worked through the disappointment and insult from that event. One mom’s peacefully enjoying the yearlong fracture-free period, and brimming with excitement over the child she’s expecting after months of trying. One mom peeled back her facade and showed the jumble of agonizing complications that make up her world.
There was one mom in particular I was worried about, and I know others are too. She’s a newer OI mom, and she’s in a place I remember quite well. Her child is on the severe side, and has had medical complications, and she’s consumed with fear that her son is so severe he won’t survive. When I was introduced to her, the first question she asked me was whether my daughter had the same kind of medical issues her child has had at this age. No, I answered. She didn’t. I could see this mom’s face close off at my answer, so certain that she is, once again, completely alone.
She’s lost in her sorrow and anger. She’s furious that she was given this child whose future no one can predict. She’s convinced that her child is so much more severe than all of the other OI children out there, that all she can do is wait for the worst.
I know because she is where I was when my daughter was her child’s age.
I want to take her aside and share her pain, and then help her let go of some of it. I want to guide her thoughts to the place where she understands the huge variety of OI symptom possibilities. Just because there isn’t an exact match out there for what her child is going through, just because there isn’t a template that says “if your child has X, Y, and Z symptoms, he or she will have this long of a life” she shouldn’t despair. Each child with OI is so very different from the others that there *is* no predicting, there *is* no way to know what will happen.
And that’s okay.
The only thing that gave me any hope at all when my daughter was young was finding the group of OI parents that is represented at this camp. Seeing other families dealing with their variety of OI–whether pieces of my daughter’s symptoms were represented or not–gave me strength to push beyond the fear and panic and terror over the future and make an effort to change direction. Action is the only salve for the pain of despair, and the action of the other parents inspired me to move.
I want this new mom to see that action. She’s been surrounded by other moms this week, and it’s probably an overwhelming, sometimes terrifying experience. But in this camp, and especially in the luncheon, she had the chance to see and hear the struggles and the triumph and defeat and humor and sorrow and hope every single one of us has faced. I hope she listened closely and experienced some of the pain that was expressed, so she could know she really is *not* alone. There were 40 moms in that room who know exactly what she’s going through, whether their child has her child’s symptoms or not.
On some level, we were each talking directly to her, saying “hear my story, listen carefully. We are your family.”
And you are not alone.
When we left camp last year, I cried most of the drive back to Portland. But last year’s week of camp was interrupted by a crisis happening at home, and so there were a lot of tears all week over my frustration and worry. I figured the crying was just spillover. This year, home is peaceful. All is well. But the prospect of driving out of the parking lot and not looking back fills me with sadness.
I see the faces of staff members in their red shirts, the goofy grin of the handyman and the warmth of Uncle Mike, the brisk, sunny smile of the food service director and the perpetual motion of my dear laundry friend. The theatrical, dynamic camp organizer who shares herself with everyone she meets. The young staff members with their boundless enthusiasm and will to further the purpose of serving special needs children and the determination to work out any wrinkles in the plan. The young “core” group and the yellow-shirt buddies, teenagers building character and friendships they will nurture for the rest of their lives. And the families.
The families. The OI family. The only people who know without explanation what my life is, despite our individual differences. I have only started to get to know them, I’ve only had one week–or if we’re lucky, this is the second year together at camp–to become closer, and now we have to part. I’ve attached to some of them with industrial-strength emotional velcro, and pulling away hurts.
I have to go and say goodbye to these people. In writing this blog right now, I’m avoiding the inevitable. But it has to be done, and I’ll cry big sloppy tears and embarrass my daughter. And then I’ll get on the road and watch this beautiful place disappear in my rearview mirror.
Time to put on my big girl panties and say goodbye.
My husband shared the news with me that Shriners Hospitals are going to start charging patients for the care they provide.
(here’s a link to the story. http://www.upi.com/Health_News/2011/07/24/Shriners-Hospitals-to-start-charging/UPI-41131311521938/)
My initial response was sadness, but when I found out more details, I realized the news wasn’t so bad. Shriners will start taking insurance, and billing patients for the amount insurance doesn’t cover. And they will still provide care at no cost to patients without insurance. This move makes it possible for them to serve more patients. At our Shriners, they’ve been asking for insurance information for years. I suppose this just standardizes the process.
Among the OI parents I know, talk of Shriners Hospitals elicits a mixed reaction. Some parents have had a terrible experience at their local Shriners, and will never go back. Some people have heard about other people having a terrible experience at Shriners, and advise others to stay away. Some have no other option. Some have chosen Shriners because of the excellent care they offer. This is my category.
We started going to Chicago Shriners when my daughter had her first major fracture(s) two years after moving to Chicagoland. We had lived in southern Illinois until she was 5, and the closest Shriners was St. Louis. We had heard from the only other OI family we knew in southern Illinois that St. Louis Shriners totally mishandled fractures, had a different, uninformed resident providing care every time they went, and were generally terrible at OI treatment. Our hospital at the time was Cardinal Glennon, which I just loved. We had a quirky doctor who reminded me of John Cleese, and he would frequently return my calls from his home, in the evening after he left the hospital. I liked that personal touch. He was easy to work with, though I found out after contact with more OI families that he was the kind of “wait and see” OI doctor that can cause serious setbacks in OI kids. At any rate, we were happy with the hospital.
When we moved, I delayed the process of finding care for my daughter. I was uninsured and unable to find permanent employment with benefits. But when my daughter fractured her femur and then her tibia and fibula within three days of each other, we were forced into a decision. I called every orthopedic office in a three-county area trying to get assistance, just someone who would help me splint this kid, and no one would help me. One “top notch” ortho’s office actually told me that I needed to find an internist to deal with my daughter’s OI. Right. Because OI isn’t an orthopedic condition. Mmhmm.
We eventually found an ortho who would help splint my daughter. And the only reason we got in was because one of the people working there had a daughter who also has OI. I guess they weren’t freaked out by the prospect of having a fragile child in their office. We got the best care from the staff there, and were referred to Chicago Shriners. I balked at first, but the other OI mom allayed my fears. This Shriners wasn’t like the one in St. Louis. So I called. I made my appointment. And at that Shriners, we found a second home.
Over the years, the doctors and nurses at Chicago Shriners have been with us through nine surgeries, countless pamidronate treatments, clinic visits, PT sessions, wheelchair evaluations, and recreational outings. Dr. Peter Smith, the ortho who handles OI, is another quirky individual. He can be difficult to read, and for the first while we knew him, he was a little unresponsive. I’ve since learned that he can be painfully shy, and is the kind of egghead who makes an excellent surgeon, but he takes a while to warm up to strangers. After that first getting-to-know-you-two-years, we developed a warm relationship. I can–and do–doggedly pursue questions I don’t feel he’s answered clearly, and I get the sense that he respects my opinion and really listens to my daughter. I know he’s not right about every treatment decision we’ve made, but on the whole, we’ve had a wonderful experience with him. There hasn’t been a single request he’s ignored, a conversation he refuses to have, a question he won’t answer, or a letter he won’t write. I ask, he does. I do have to be the one initiating most of the process, and with the input of other OI families I’ve been able to set most of our course. He’s not the most aggressive OI doctor out there.
Can you tell I’ve had many negative comments about Dr. Smith from other OI moms? People have different opinions.
By far, though, our favorite department is PT. My daughter just adores the PT staff, and with good reason. She’s had the same PT since she was 7, except for the time that PT was out on maternity leave. She took her first steps with that PT, learned exercises for trunk strengthening, and will do pretty much whatever the PT says. Another PT, who now runs the gait lab, is one of her favorite people on the planet just because he always stops to give her a hug and chat about every little thing every single time we’re in the hospital. He and his wife, a nurse in Recovery, are like family to my daughter. Another PT department favorite is the wheelchair guy, one of those people who says “what do you need? we’ll figure out how to make it happen, even if we have to construct it from bailing wire and duct tape.” Nothing is impossible to him.
And the nurses. Those dedicated men and women have been at my daughter’s side for major surgeries and minor in-patient treatments, holding puke trays and changing dressings, helping me hang twinkle-lights and posters above the bed for when my daughter got out of double-femur rodding surgery and wouldn’t be able to sit up for a while, hanging out during games of Connect-Four or helping out with the “spa time” activities we brought with us–mud masks, facials, pedicures–or just spending time getting to know my daughter. From registered nurses to CNAs to the cleaning staff, everyone connected on a personal level to me and my daughter. Sure, we were there a lot, at one time visiting four times a year for three days at a time, more if we had surgery. But they could have kept it impersonal, they could have maintained a professional distance. Instead they embraced us as part of the Shriners family.
Now that my daughter’s almost 18, we will return to Shriners only a few more times. We’ve got to get some x-rays done to check the status of her back, and they run an independent-living training program I want my daughter to go through before she goes away to college. And now that we’re insured, I’ll happily submit our insurance card for all expenses, and pay what isn’t covered. They’re worth it.
But the day is coming when my daughter will no longer go to Shriners as a patient, and that will make me very sad. They’ve provided stability and comfort during our most stressful OI times. Far beyond just the medical care, they’ve given my daughter and me a wonderful gift, and I owe them a debt of gratitude.
Thank you, Chicago Shriners.
Meg Currell is a proud supporter of Chicago Shriners Children’s Hospital, and Shriners hospitals around the country.
I’ve never been so happy to see rain my whole life.
Today’s the peer leadership retreat at the high ropes course, and my daughter is headed out with a group of about 200 people to challenge themselves and each other. It’s going to be a day full of new experiences, of making relationships and bonding as a group.
But all I can imagine is her falling. I can hear the “thud”. I see no one around her who knows how to handle her. I woke this morning petrified that she’ll fall from 20 feet off the ground and no one will know what to do. No one will know not to reposition her. They have no medical training at all, and certainly no training in my daughter.
I thought the rain might cause the day to be cancelled, but it’s going forward. Watch for tweets throughout the day. And pray that my husband can put up with me today.
Last First Day
I just dropped my daughter off for her last first day of school. This is her senior year, and through a series of fortunate events, a new special education coordinator has taken care of everything my daughter will need. We’ve already trained the perfectly appropriate new aide–my daughter handled most of the training herself–and all of the other issues we need to sort out will be addressed in a meeting that’s already scheduled. This may be our smoothest beginning-of-the-school-year ever. I suppose with 12 years of practice, it’s about time we got it right, huh?
But I still cried myself to sleep last night. This is her last “first” day. Next year, she’ll be headed to university, where–yes, I know–she’ll have another first day of school. But I won’t be there. That will be *her* life, the beginning of her time on her own. Yes, I know she’ll still need me, yes, I know she’ll still be my daughter. I’ve been through this before, with my oldest son who’s well into college.
I mourned his last first day of school too. After he left, I cried too, just like I’m crying now.
On some level, though, this “last first day” is harder. When she was very small and I wallowed in depression about the “tragic” nature of her life with OI, I was sure she would have a shortened lifespan, took to heart the literature that said that the children with the most severe cases of OI don’t live beyond their teen years. I didn’t believe she’d make it this far. The possibility of her not surviving was my primary focus for those first few years. Because I already had an older child, I knew that this kind of mourning wasn’t normal, but I couldn’t move past it. With my older child, I dreamed of the wonderful things he would someday do; he’d be a basketball star because he loved basketball! and he’d be a famous dancer because he loved to dance! and he’d be a famous inventor because he made all kinds of amazing creations in Lego! I had such plans for him. (he hasn’t done a single one of those, but he’s amazing anyway.)
But for my daughter, I anticipated no such delights. For the first 2-3 years, I held my gorgeous, rosy-cheeked, curly-haired daughter close to me, afraid to leave her side for even a brief moment lest I never see her again. I still can’t bring myself to articulate the event I was so afraid of becoming reality.
I did eventually move beyond this fear. When she started going to preschool, I shed a little despair. When she got her first power wheelchair and started moving around on her own, I lost a little more. When she began going to school all day, I dropped a bit more. When she was in middle school, her medical concerns became more involved, and my expanding excitement for her contracted. Starting high school made it unfurl again, and for the last few years, her world and her independence have broadened so much that I sometimes forget she even has a disability. Only moments like Training Day, earlier this week when we met the new aide and showed her the OI-handling ropes, remind me of the concerns in which I once swam.
And today. Days like today, when I realize that this is the last first day of school, when this is the last first day I will drop her off at the door of the school, a knot in my throat as I watch her disappear into the dark, crowded building, all alone, unsure of what the day and the year will bring. This is the last first day of school when she will get up early, take a shower, put on her brand new outfit, do her hair just so, her bag already packed and ready by the door, and wait for me like a shiny new penny. I see her beautiful smile and remember that tiny baby I held so desperately, so fearfully, 17 years ago. That little body I held like a corn-husk doll, so light and insubstantial and terribly delicate. That tiny, fragile girl I protected from even casual contact with strangers–she is now this bold, powerful, brightly shining beacon of humor and kindness, who will, in about 12 months’ time, go into the complete unknown and show the entire world who she is–without her mother by her side.
And this is the last time I get to be by her side for the first day. So it’s really only my last first day.
Meg Currell is spending the day wandering through memories of her beautiful 17-year-old daughter who has OI. And crying a little bit.
We’re a week into the school year, and after the pre-first-day-of-school rigamarole went so incredibly smoothly, I thought the worst was over. I really thought that all we would have to figure out from here was the transition to college, a special and separate challenge.
I can be very naive, even at my age.
Last week, I discovered that the new special education coordinator isn’t as on-the-ball as I thought she was. In fact, I was shocked to find out she has some baffling attitudes about students with special needs. See if you follow this.
My daughter has an aide who assists her with before-and-after-school stuff, and serves as an offensive lineman in the crowded hallways. Anyone with a disability or disabled child can tell you that it takes longer for a person in a wheelchair to do common tasks. Before school, my daughter has to thread her way through the crowded hallways to the ramp at the far end of the lunchroom just to get to her locker. Pushing a manual chair up a ramp with a full backpack is a difficult task, especially for someone who weighs about 60 lbs soaking wet. Her aide is supposed to meet her at the front door and assist her with the backpack-unloading process. However, her aide has stated that she can’t be at school any earlier than 10 minutes before the bell rings. Period.
So I wrote an email to the case manager, but didn’t hear anything back. I got a call from the (new) coordinator on Friday, and here’s the gist.
Me: My daughter needs her aide to be at school earlier. She needs help getting through the crowd and up the ramp.
New Coordinator: The aide can’t be there any earlier. Her contract will not allow it. Why can’t your daughter just get to school later? The aide gets there in plenty of time before the bell rings. She can just meet your daughter at the locker.
Me: My daughter can’t get to school later because it takes longer for her to get her materials ready, and she has to push her chair up the big ramp with all of her materials on the back. She needs help with the ramp.
New Coordinator: Couldn’t she just leave her stuff in the nurse’s office and meet the aide at her locker later?
Me: No, I don’t think that’s a good plan. Really, she just needs her to be there to help her up the ramp.
New Coordinator: Well, we need to make sure we’re not demanding anything of the aide that’s outside the terms of her contract. And, of course, also meeting your daughter’s needs. (pause) doesn’t your daughter have a friend she meets every morning? Someone who can help her up the ramp?
Me: Hold on, I need a moment to process what you just said. (I pause, trying to control my derisive laughter) No, I don’t think it’s appropriate for the school to expect another student to do the job that an aide has been hired for. My daughter just needs help up the ramp.
New Coordinator: Well, does your daughter have access to electronic books?
Me: (biting my tongue) My daughter has two sets of books, one at home…
New Coordinator: (interrupting) Maybe she should have electronic books, then her backpack wouldn’t be so heavy.
Me: My daughter has two sets of books, one at home and one at school. It’s in her IEP. (I don’t bust the new SPECIAL EDUCATION coordinator for not being familiar with my daughter’s IEP, though I am sorely tempted)
New Coordinator: oh, so why is the backpack so heavy?
Me: She has one set that stays at school so she doesn’t have to carry them back and forth. It’s not the textbooks that make the backpack so heavy, it’s all the notebooks and binders, her lunch. It’s only going to get worse in the winter.
New Coordinator: Oh. Well, the previous aides arrived at school early out of the goodness of their hearts, I can’t ask them to do that.
Me: Well, something needs to be done, because my daughter needs help up that ramp.
New Coordinator: And you’re sure she can’t just wait for her at the door?
Me: No, she’s not going to wait for her at the door. She risks being late to class, and she will miss out on all of her interaction with peers. Socialization is a huge component of her high school education, and before school starts is a big socialization time.
New Coordinator: I can’t ask the aide to come in early so your daughter can hang out with her friends.
Me: (biting my tongue again) No, that’s not what we’re asking. My daughter needs help getting up the ramp.
New Coordinator: I’m going to have to think about this a while.
Me: Okay, I think that’s a good idea.
This conversation makes me really worried about the New Coordinator’s understanding of working with students with disabilities in general, not just my daughter. The level of ignorance she demonstrated is very troubling.
I really thought this was over. Now it seems that our process of educating the people who are supposed to be helping *us* through this process has started all over again.
Meg Currell spent the weekend rocking silently in a corner while her family spoke in hushed tones.
My daughter visited another university last weekend.
My husband pulled duty on this one, and that was a calculated decision. They’re visiting University of Montana, and my husband had never had the chance to see the Rocky Mountains, so he got to take her on this trek. I think the university trip will be eye-opening for her, and exciting for him.
But the process of getting them ready to go was emotionally taxing for me. Thinking about all of the different aspects of travel that I just DO–and trying to tell my husband what to do and how–it was all a little overwhelming. Packing clothes appropriate for the weather–and in case there’s a problem. And since it’s dad taking her, other issues come up. My mind races through many nightmare scenarios: What if she needs help in a bathroom? What if she breaks while he’s carrying her onto the plane? What if she falls?
But I have a good feeling about this trip. She’s going to be fine.
Turns out, she was. My husband was so excited about this trip he wrote this week’s blog. Enjoy.
We got into Missoula the previous afternoon, a happy coincidence of cheaper air fare out of Spokane for coming in a day early. Thankfully we had great weather for the entire trip, and that allowed us time to poke around campus at Montana and get our bearings. First impressions were that the sidewalks were good, curb cuts were logically placed and well-maintained, and the overall landscape was nicely flat. Good start. We found ourselves some noodles for dinner and hit the hay early, as we had an early start the next day.
Our first scheduled meeting was with the Physics Department. How this got on our schedule is anybody’s guess, as my daughter has as much interest in being a physicist as Snookie does in joining the Dominican Sisters of the Eucharist. Luckily we were able to gracefully bow out of that meeting and instead headed over to talk to somebody at Student Housing.
The news here was pretty good. Dorm selection is limited to begin with, as it isn’t a huge school to begin with. Accordingly, accessible rooms are similarly limited, and the configuration of many of them is not optimal – specifically bathrooms that are down the hall. But there is one dorm with two accessible rooms per floor that do have ensuite baths. As you can imagine, they go quick, and it’s first-come-first-served.
That does present another problem, however: fire safety. If she is above ground level the equation becomes considerably more complicated, as a failsafe escape plan will need to be in place to get her out of the building in the event of a fire. Who’s responsibility is that? The university? The fire department? Us? That’s a series of meetings I would rather not have – three groups of people playing pass-the-buck with my daughter’s life on the line. So there’s that.
The other question mark with housing is, believe it or not, windows. None of the dorms at the University of Montana are air conditioned. People with OI tend to have less tolerance for heat, and as a rule, air conditioning is a pre-requisite. From what we could see from the room layout diagrams we were shown, there only appears to be space for one small window – likely not enough for a window-unit air conditioner. We would have to see the specific rooms in question to be sure, but right now it’s an outstanding issue.
Next was our official tour, which was the usual spin around the grounds with the historic and eccentric features of the campus getting special attention. The nice thing about this was, the tour guide treated my daughter like any other student – but ensured that the route she was taking would be easy for my daughter to manage in her wheelchair.
The funny story from the tour surrounded the Foresters’ Ball, an annual event on campus for over 90 years. The Forestry Club takes over the old gymnasium and builds an entire 19th century logging town inside the building to host the event. Their web site has details: http://www.cfc.umt.edu/forestersball/ ~ these guys are not messing around.
But as you would expect, there are shenanigans surrounding the event. There is a fierce (but friendly) rivalry between the schools of Forestry and Law, two of the biggest schools on campus. So every year before the Ball, the Forestry Department’s mascot, a Moose named Bertha, is stolen by the Law School’s Moose Liberation Organization who holds it for ransom – tickets to the Ball for all the law students. The Foresters’ Armed Response Team is usually charged with the task of retrieving Bertha from her captors.
The tour over, we grabbed lunch at the Food Zoo (the school’s sports teams are the Grizzlies, so there is an animals-in-captivity theme found in many places), and went to talk to the Admissions people. No real surprises here, other than the fact that they do not have competitive admissions: your grades and SAT’s aren’t put up against those of other students. If you meet their qualifications, you get in. One other factor that unfortunately doesn’t benefit us is the Western Undergraduate Exchange (WUE) program. Participating schools offer tuition reduction to students from member states, kind of a middle ground between in-state and out-of-state tuition. The list of participating schools is substantial: http://wue.wiche.edu/search_results.jsp?searchType=all
But the first half of the day was just pre-amble, the serious stuff began with our visit to Disabled Student Services. This is the official university department that helps students with disabilities integrate into their educational and housing environments. We had a good feeling about this from the moment our host introduced himself: he is blind.
We covered a LOT of material in an hour, I’ll try to give you the highlights. First of all, my daughter would have a DSS coordinator who would be her point of contact for getting things set up and any issues that she would have going forward. Her class schedule will be reviewed to ensure that the buildings she will be attending class in are accessible – and the class literally moved if it isn’t. She could also be assigned an in-class “auxiliary aide” if we felt that was needed (it probably won’t be). There are some full- or partial-online classes which anyone can sign up for. In terms of a de-facto alternative delivery platform for class material (webcasts, etc.) they do that on a case-by-case basis. Nearly all the classes have attendance requirements, but in my daughter’s case there would be exceptions in the event of medical complications.
Books are an issue for my daughter, as she has limited upper-body strength, and 15-lb. textbooks are the enemy. Our DSS representative said that there are many new solutions for online and/or alternative textbooks. Bookshare.org is their go-to source, or they also frequently request electronic versions from the publisher in ePub format. But in the absolute worst-case scenario, they will take the book she needs, rip the spine off and scan it into a searchable PDF file for her use on a laptop or tablet. Sweet. The bonus of course is that then the book can be used by other students as well.
He also introduced us to “smart pens.” The basic functionality is this: you use the smart pen on smart paper, taking notes as you usually would. The pen has a recording device on board, and associates a specific point in the audio with the notes you were taking at the time. That’s just the beginning of the stuff these things can do, and if we can’t find a portable computer solution that does the trick we will have to look at this as a supplement to my daughter’s digital tool set. Here’s a peek: http://www.livescribe.com/en-us/smartpen/
The other issue that I had been asking people about all day was snow, and snow removal. It is, after all, Montana. But I didn’t find out until I got home that Missoula sits on an ancient dried lake bed. Glacial Lake Missoula, as it could have been called were there people around to name it at the time, was about 950 feet deep, and the floor of the lake bed is very flat. The mountains that surround it provide a barrier that weather systems must go over or around, often times failing to deposit their fluffy white payload on Missoula completely. As a result, their winter climate and snowfall averages are nearly identical to the Chicago area. Compare that with Great Falls, just 3 hours to the northeast, which gets an extra foot and a half of snow.
So that’s fine, but when they do get it, how well do they handle it? “Depends on the storm,” our host told us. Okay, fair enough. He did point us to their web site, which has a cool feature in their maps section: the “access map” shows handicapped parking, curb cuts, building entrances – and their automated door capabilities, as well as priority sidewalk snow plow routes. That map is interactive, and is available for you iPhone or Android phone too.
So following the Psych 101 class we sat in on, we headed to what many campuses would call the “student union,” known as University Center, for our last meeting of the day. This was with ADSUM, the Alliance for Disability and Students at the University of Montana. http://www.umt.edu/adsum/ This is a student organization that has been on campus for over 20 years, acting as an advocate and ombudsman for the disabled student population. The current president of the group met with us, and we were fortunate to have another mobility-impaired student join us for the hour. We got a lot of great answers.
First of all, the university has an ADA committee, charged with ensuring the university’s compliance with the Americans with Disabilities Act. This committee is made up of representatives from the administration, various academic departments, technology services, facilities, housing (both on- and off-campus), Affirmative Action, EOE, Disabled Student Services, and a representative from ADSUM in addition to other students. We were, at first, awed by this; however it turns out the university is required by law to appoint an ADA coordinator. They have chosen to have this committee act in that capacity.
Next, the university has an online form where you can submit reports of a barrier to access. When you submit that form online, it is brought up with the ADA committee. Additionally, anyone can address matters pertaining to disability access or civil rights violations to the committee just by talking to one of the committee members. This was great news.
The ADSUM members we talked to gave us the skinny on bus service (great, except during heavy snowfall, and free), snow removal (not a problem), dorms and apartments (good, but choose carefully), professors (nearly always very willing to facilitate whatever accommodations a disabled student needs), and the Disabled Student Services department (wonderful), among many other things. It was a marvelous opportunity to get reliable, unfiltered information about the university; it was the best meeting of the day, hands down.
We came away from the day very tired, as even though it is not a large campus, we crossed it many times during the day. My daughter always needs time to process things when she gets this much new information, so I didn’t expect a lot in terms of reaction from her right then. But she did say something that hadn’t occurred to me, but was very true: there were no “deal-breakers” at Montana. Where it sits on her wish list of schools remains to be seen. But it didn’t get kicked off the list entirely, and that in itself is good news.
Meg Currell is inching closer to being comfortable with the distant thought that her daughter may someday go far away to school. Her husband Tim wrote a lot of this post.
My daughter and me on the Oregon Coast, 2011
My son has been driving himself and my daughter to school. He parks in the spot that was reserved for my daughter’s use starting freshman year, the handicapped spot designated “No Parking” by the school so it wouldn’t be filled with other legally (or illegally) parked cars. That didn’t stop the former principal from parking there, but that has already been discussed.
Since we didn’t get a parking sticker or any kind of prior approval, I asked this morning whether my son was getting any push-back from the school about parking in the no-parking spot.
“No,” he said, “though one of the deans did mention that he saw me driving. But he was fine with it. Once they know that she’s with me, I can pretty much do anything I want. She’s MAGICAL.”
We laughed, then he said “Yeah, I murdered that guy, but my sister’s with me, and she’s in a wheelchair, so…”
Of course, he was joking. He didn’t murder that guy. But the fact remains that because of my daughter having OI, we *have* gotten some privileges other people don’t get. Yes, dealing with OI can be a serious downer sometimes, and my daughter has experienced more pain in her lifetime than any one person should. She’ll always have to use a wheelchair, she’ll always spend a certain amount of time in hospitals, and strangers will always, always look at her funny. But I think it’s time we took a good-natured look at the fun things we’ve gotten to do because my daughter has a physical disability. Just this once. I promise I’ll go back to b*tching and moaning next week.
The most obvious benefit is those juicy parking spots. Yep, they’re usually pretty awesome; wider than most spots so she can transfer to the wheelchair, and closer to the door. Most of the time. And then there’s priority seating at the movie theater. The best example of this is when we went to the midnight showing of a Harry Potter movie, and the crowd was backed up onto the street. My daughter didn’t have to wait in line like everyone else, and neither did her entourage…I mean, family. We all got to skip the lines and find seats before the hoards arrived.
We get to board planes before everyone else, and even (according to one flight attendant) get to change seats closer to the door if we’re too far back. This was a godsend, because carrying a fragile child down a narrow aisle past seat backs that threaten to snag her foot and break a tib/fib makes my skin crawl.
When she was very small, we never had to wait in the doctor’s waiting room. Because of the heightened danger from respiratory infections, the doctors always recommended that when we arrived at the doctor’s office, the staff have us wait in a room immediately to avoid catching germs from other sick kids. We still had to wait our turn, but we didn’t have to sit in the waiting room.
Because she is so much smaller than her age, she paid the “child” rate when available much longer than other kids. And she can eat a kids’ meal and be satisfied, which means she is cheap to feed!
Oh, the array of wonderful things we’ve gotten to do through Shriners…she’s gone to a Bulls game (though she has absolutely no interest in basketball) and sat in the fancy box and had fancy food. Our first visit to Shriners was just after Christmas, when they were taking down the display that the Mars Candy Company had put up for Christmas. It was a 4X6′ diorama of a winter scene, completed exclusively in candy. The snow was white M&Ms, the skating pond blue fruit-roll-ups, the trees made of wrapped candies stacked evergreen-style in a cone shape. When they dismantled the scene, the kids who were in the hospital got to split the booty (only the wrapped stuff), so she came home with an enormous bag of candy straight from the Mars factory. We were on TV once, when the local news interviewed parents whose kids happened to be at Shriners that day. That may have been the same day we got to meet the beauty queens (listen up, fellas), about 20 of them who were touring the hospital that day. My daughter got to wear a real, honest-to-God tiara and have her picture taken with dozens and dozens of perfect, shining teeth. There were beauty kings there as well, but they didn’t have cool tiaras.
At major athletic events, like Big 10 football games, we sit in the wheelchair section with her, which affords a close-up view of the field, albeit from the endzone.
Because of her we got to visit DC as a family, the last big vacation before my oldest went off to college. We were there for an OI conference, but we took an extra week and visited as many of the sights as we could–again, not really standing in line much because of the magical wheelchair. We even got to tour the Pentagon, and my daughter and I had to ride on the elevator for part of the tour while the others took stairs. They gave us a personal attendant on the top-secret elevators; a full parade-dress Marine. Nobody else on the tour got their own Marine. Just us.
Also through Shriners, she was nominated for a Make-a-Wish, which was one of the most amazing experiences of her–and my–life. She chose to go on a massive shopping spree in New York City, and Make-a-Wish put us up in the Hyatt Grand Central, directly above Grand Central Station. Four of us (her, me, another adult and one of my daughter’s close friends) got to go shopping with a personal shopper at Macy’s and then to see Wicked on Broadway. That was three years ago, and she’s *still* wearing the clothes she got in New York, and we talk about that trip all the time. It was truly a magical weekend.
But perhaps the coup de grace of events in which we participated simply because she has a disability was the three-week road trip to the west coast two summers ago. We signed her up for OI week at Camp Attitude, and decided to drive instead of fly. We took the week before camp to drive through grasslands, mountains, and forests, and the week after camp we drove down the coast of California, through the desert of Nevada, the salt flats in Utah, and back into the mountains. It is because of that trip that I fell in love with mountains and have decided to move there when I’ve kicked the kids out for good…I mean, when they both graduate from high school and release me from suburban servitude.
We visited the West coast for camp again last summer, this time flying, and got to spend one night on the Oregon coast. We stayed in a hotel right on the beach, and from our balcony, we watched the sunset over the waves. It was an exceptionally beautiful 24 hours that I will never forget.
And just recently, my husband got to fly to Montana with her to visit University of Montana as a potential university for her. He had never seen the Rockies before, and this gave him the opportunity to experience them.
That’s just the list of things we’ve gotten to do. This doesn’t even mention the people we’ve gotten to meet, friends we’ve made simply because she has this disability. Her teachers, aides, school administrators, fire fighters, doctors, nurses, kind and loving friends who aren’t overwhelmed by the thought of the wheelchair.
Having a child with a disability has done all that soul-enriching stuff everyone talks about, and I don’t mean to discount that. But just this once, it’s nice to look at all the incredible experiences we’ve had simply because doors have opened wide enough for my disabled child–and her lucky family–to wheel through. It really has been magical!
Meg Currell is reveling in some memories of her daughter’s extraordinary life.
After months of looking and list-making and visiting and meetings, my daughter has found a school that she absolutely loves.
Last Friday, we attended an informational session and tour on the campus in Evanston, IL. I made the appointment with the express purpose of having my daughter look at a small school, just to give her a comparison with the big schools she’s seen so far. It was just for measurement, for an idea of what else is out there.
About 20 minutes into the 45 minute information session, I noticed her face had fallen. She looked crestfallen, and I couldn’t figure out what had happened.
“You okay?” I mouthed.
She nodded mournfully.
“What?” I said silently.
“I love it.” she replied, bottom lip protruding, eyes going soft.
And I knew. She found the place that fits those standards even she didn’t know she had. She kept saying she didn’t know what she wanted, but she would know it when she saw it–and just that moment, she saw it.
During the information session, we learned about Northwestern’s philosophy of collaborative learning, of creating an encouraging environment that enhances the lives of all students. There is no combative competition at this school, but an attitude that says “Helping you succeed will help me as well.” The atmosphere at Northwestern is quietly proud, nothing brash or arrogant. Every person we encountered greeted us with a friendly smile or even a “hello”, which my children had not yet encountered in the suburbs of Chicago. Even better were the course options, from social policy to English to (of course) journalism. The options spread before my daughter like a delectable banquet, and the admissions rep said they encourage combinations, including double majors or majors and minors in vastly different disciplines. My daughter’s eyes lit up like fireflies at the idea that she could feed both her pragmatic and passionate sides.
Now, the statistics quoted on annual admission numbers and grades required to be considered for admission are not encouraging for someone who dwells comfortably in the upper-middle half of the mean. If you get my drift. It’s a school made up of high school valedictorians, top 2% of students in large schools who excelled at everything they tried and strove for achievement from a young age. My children were encouraged to be exactly who they are, to work their hardest and be happy. They came from a different environment. I just didn’t push them hard enough. They were loved completely, but not…driven.
And so my daughter knows this. She knows it’s rather unlikely her application will even be considered, even if she attaches an 8X10 glossy of her gorgeous smile. During the information session and tour, she fell deeper and deeper in love with this school that’s so out of reach, it was heartbreaking to watch.
But she pulled out a victory in the end. She stated clearly that while she knows she won’t be admitted to this school (when I asked her privately what she thought, she said “Welcome to Neverland”), she now knows more accurately what she wants from a school. This will help her narrow down her choices. Gone are the big schools–despite the ebullient school spirit at places like MSU–and the party schools–she doesn’t want to be around people who just don’t give a shit–and the schools for the academic elite. She wants a community, a place of encouragement and mutual respect, one that fosters ideas and camaraderie, a place she can find and use her voice, not just be one of the crowd.
I wanted my daughter to feel that excitement, the sense of seeing something bigger than herself and striving toward it. Having her fall in love with an out-of-reach school isn’t optimal, but having her see what’s possible for her outside her current understanding is exactly what I wanted. The germ of inspiration has been planted, and under the right conditions, that seed will flourish. She has the potential to do amazing things, but the right environment is essential to her continued growth. She’s a step closer to finding that perfect environment for her.
Sometimes knowing what you can’t have can help you figure out more clearly what you want.
Meg Currell is happy that her daughter has a realistic idea of what she wants. She hopes that her readers don’t jump on her with both feet for not pumping her daughter’s tires full of hot air.
I’d Like to File a Complaint
Conveniently placed accessibility button
So here’s the thing: my daughter is small. Not just “half-Asian” small, she’s 24″ wingspan small. The combined effect of OI and half-Asian have worked their magic, and my fits-in-the-overhead-compartment-daughter is truly pint-sized.
Funny, I used to love the nickname Pa used for Laura in Little house on the Prairie, “Half-Pint”, and now I have a half-pint of my own.
She is, as you can plainly see, simply beautiful, and her diminutive stature is part of her essential beauty. She has a delicacy, an effortless grace that make her more than just superficially attractive. But her size is a real bone (HAHAHAHAHAHA! little OI joke there) of contention when dealing with The World.
See, The World is arranged for the average-height adult. Full disclosure time: I am not average height. I am what’s known as a “giantess”, or “TALL” woman, capping out at a supernumerary height of 5’9″ tall. I know, I know, it’s hard to believe that I function at all at that excessive elevation, but I manage. Many objects in The World are actually way too low for me–like the keypads on those debit/credit card swipe machines at the grocery store, which I can only see if I bend in half at the waist and crane my neck nearly sideways. I think I should get a discount.
My daughter should get one too–because she has to use her acrobatic skills just to pay for groceries. We had her use the self-checkout once, just to see if the “accessible” one really was accessible. Just to choose the payment method, she had to brake her chair, unbuckle her seatbelt, stand up on the seat of her chair, lean over the scanner/scale, shift most of her weight onto the belt, and stretch her full length to push the button.
I think she’ll probably use the real-live checkers when she goes grocery shopping.
As we get closer to her age of independence, however, I find myself looking ever-more critically at the way The World is designed. Here is a short list of generic facilities she will not be able to access without assistance from an able-bodied person.
1) The gas station–most of them have call buttons for people with disabilities to ask for help, but have you ever looked at them? They’re usually 1-inch squares integrated into the face of the pump at eye level for (ha ha!) average-height people. So in order for a person in a wheelchair to even push that button, they have to get out of the car they’re in, stand up, or in my daughter’s case, stand on something else, to push the button. Just to ask for help. Every time I buy gas I shake my head at the uselessness of these buttons, at least for my daughter.
2) Grocery stores–more than half of the merchandise is above the waist level of an average-height person. Anything above 3 feet off the ground is unreachable for my daughter. Anything below 2 feet off the ground is also unreachable for her unless she gets out of her chair. She’s fortunate that she CAN get herself in and out of her chair by herself–some people in wheelchairs can’t do that. But shopping presents a unique challenge. Those grabber tools are useless for her once they hold any object, because she is not strong enough to hold the grip tight and hold the weight of the item. She’s very strong, especially compared to when she was younger, but this still presents a problem.
3) Libraries–Same issue as the grocery. Both facilities make the most of vertical storage, which is fantastic for giantesses like me, not so much for half-Asian-OI girls like her.
4) Clothing stores–there are a few notable clothing stores that simply rock for accessibility. H&M has done an incredible job with managing space between the racks, keeping the racks low enough for even half-Asian-OI girls to see everything, and truly reserving the handicap accessible changing rooms for people with disabilities. So far, they are the only store we’ve encountered that does this good a job. All other stores have their racks too close together for people in wheelchairs to even get by, merchandise displayed high on the wall, and indiscriminately used changing rooms. Kohl’s is the worst for space between the racks, but one store manager (not Kohl’s) was so rude and defiant about the use of their “handicapped” changing rooms that we dropped the items we were considering and walked out of the store.
5) Most schools/universities built before 1976–even the venerable Harvard of the Midwest keeps their disabled student services office in the basement of a building accessible by a rather frightening, uneven, pot-hole-infested ramp hidden behind a hedgerow. It’s almost like they’re saying “people in wheelchairs, please go away.” A new school I talked to last week had wonderfully, beautifully accessible residence halls–but no cafeteria. At all. Every student who comes to campus must provide their own food. I can’t even begin to calculate what it would take for my daughter to be ready to cook for herself AND live on her own AND go to college less than one year from now.
And finally, 6) Even attempted accessibility often fails. The picture above is from an outdoor mall my daughter and I visited last week, a facility that’s all on one level, and has wonderful handicap parking and ramps from the parking lot. This button was for a door that led to the bathrooms, and as you can see, it’s a foot above her head, 18 inches out of her reach. Right at eye-level for the average-height person. A little low for me, but my daughter would have to don her Flying Wallenda cape to push this button.
Good thing she didn’t have to pee.
I know The World isn’t designed for my daughter. It’s not designed for most people in wheelchairs. But when I stop to think of all the places she can’t even go without assistance, it makes me a little nuts. And sad. I don’t expect anything to change. I do encourage my daughter to learn how to work within this system, because even if we did make everything in her home accessible, she’d still face these obstacles when she rolled out our door.
I guess I just needed to get this off my chest.
I originally planned a humorous (get it? humerus? no?) blog this week, but something keeps nagging at me.
My daughter has a physical disability. When she was born, I entered into the community of mothers of children with special needs, a subset of motherhood. But even from the start, I knew I wasn’t like other mothers of children with special needs (I hope it’s okay that I just abbreviate to MCSN. Thanks for understanding). It seemed the vast majority of MCSN that I knew or saw were dealing with some form of mental disability. I could see the pain on the faces of these mothers. They were dealing with something I could never understand. Some of them expressed frustration that they couldn’t communicate with their child, that they felt distanced from their child, that the child couldn’t express or accept love. To me, that was heartbreak I didn’t think I could ever bear.
Another element rose to the surface for me. AS much as I couldn’t understand their pain, I have always felt like my daughter, having a purely physical disorder, didn’t “fit” with the rest of the kids with special needs. In preschool, her tiny stature and fragility meant she had to be protected from kids who posed a danger to her, which meant, largely, the kids with mental delays. At that age, they couldn’t understand that they couldn’t just grab her arm, or play with her like they played with the other kids. It would take excited 4-year-old about three seconds to run up to her, grab her hand and pull like she was a rag doll, and my daughter’s life would be set back from 6 weeks or more while she healed from a fractured radius. One classmate in particular was fond of performing flying karate kicks in the preschool classroom, and my daughter’s aide was constantly vigilant about his whereabouts.
Protecting her from these dangers also meant isolating her from other kids. She had an adult between her and other kids from preschool through second grade, and after that time, an adult was always nearby. Middle school was especially isolating, because the kids suddenly grew exponentially larger and had a physical recklessness in the hallways that was very dangerous for her. She was also the only child with an obvious disability who was in typical classrooms, as the school had a “self-contained” classroom for the other kids in wheelchairs. She was very much the odd-man out. Add this to the paralyzing insecurity of most middle school kids, and you’ll see that middle school was not a happy time for her.
I would see other MCSN in the parking lot, going to pick up their kids, using the same handicapped parking spots I used. But I never knew them. I never interacted with other MCSN. My daughter was in a swimming class for kids with special needs for many years, and I occasionally talked with MCSN there, but by and large, we had very little to talk about. My daughter was in regular classes, wasn’t very medically involved, and could communicate easily.
Now there’s a parent group for parents of children with special needs at our school district. It’s been a long time coming, and I see great excitement among the parents in the emails that come through. They’ve found a place where they feel heard and understood, and it’s very exciting to see. But with each passing email, I feel a little more distanced. The focus of the group seems to be finding the best speakers about autism, and multiple emails fly about which doctor they’ve gone to, and what therapy they should discuss at the next meeting. The group’s been around since the beginning of the summer, and I feel again like I’m not quite one of the gang.
Yeah, this is a little woe-is-me. I’m sorry.
But over 18 years, I’ve come to realize that in the small world of disability, physical disabilities comprise an even smaller subset of the population. Even within physically disabled people, my daughter’s disability is a rarity. It’s far more common to see people with cerebral palsy or spina bifida or paralysis than those with brittle bones.
And what may be the most discouraging thing of all is that funding for people with *just* physical disabilities is absolutely abysmal. In this area, we have a really great agency that provides funding for kids with special needs. They do really wonderful things. But they *do not* serve my daughter’s disability. Period. They won’t serve her because she doesn’t have any developmental delay. I found the same to be true of the state agency that provided funding; if she had any kind of developmental delay, she’d qualify. Because she didn’t, and because I wouldn’t fudge the truth on her application forms, she didn’t qualify.
Now as we are researching universities, the same lack of inclusion is apparent. Most universities will offer some assistance for kids who have learning disabilities, but very few consider removing the barriers that prevent people with physical disabilities from fully participating. The attitude I see at most schools is “you’ll have to figure out a way to get around that.” Gee, thanks.
So there are times–altogether too frequent–when it seems my daughter falls through all the cracks.
Ha ha. Cracks. A little OI joke. Only a very small number of people will understand why that’s funny.
Meg Currell is feeling uncharacteristically sorry for herself. She’ll be right as rain tomorrow.
Tonight, my daughter and I are going to a local production of A Christmas Carol. I’m filled with melancholy–not your typical winter blues, but a sadness specific to my daughter’s story.
Eighteen years ago tonight, I was a married college student and nine months pregnant with my second child. My older child was four, a beautiful, sunny boy with silky brown hair and unimaginably expressive brown eyes. He was my constant companion. On this weekend 18 years ago, he and I had our “Christmas Day”. I had about a week before my due date, and I was feeling fantastic, so I happily packed my son into the Volvo and went off.
We went to a local tree sale, found the best tree we could afford, and tied it to the top of the Volvo. When we got that home, my (ex-) husband wanted to wait to put it up, but I was impatient, so I did it myself. I hadn’t bought a tree stand, so I improvised with a bucket and cinder blocks, which are inexplicably plentiful for college students. But one thing college students don’t typically have is “man” tools, so cutting the end off the tree trunk was a bit of a challenge. If I remember correctly, I sawed it off with a kitchen knife. Once the tree was up, we put the lights on it, and went off to the next destination.
I took my son to the university theater’s production of A Christmas Carol, a gorgeous, lavish production that included the most terrifying Ghost of Christmas Future I’ve ever seen. It was a 10 foot tall puppet with no face, just red lights for eyes. He had skeletal hands that gestured eerily. Scary for a 4 year old.
After all of our daytime activities were finished, we walked with friends to the Lights Fantastic parade, which started at 9 p.m. My son loved every minute.
And at midnight, I went into labor. My contractions were steady, but had long pauses in between, so I just rode it out at home. I called my sister so she could start her six-hour drive to my house, chatted with her a bit in the middle of the night, and then slept between contractions. My exhaustion served me well, because my labor was very easy and I got a good amount of sleep. At 7:50 a.m. I went to the hospital, and at 8:50 a.m. my daughter was born.
That’s when my life changed. Every birth brings a life change; having my son taught me that. But everything I knew about parenting and children and being a member of a community and education and medicine…everything changed. Solidified. Morphed into a tangible, definite schema for approaching my life.
Most of you already know this. Most OI families have gone through this transformation at one time or another.
Every December 5 for the past 18 years we have celebrated my daughter’s birth with a mini-recreation of that weekend. It usually only involves putting up the tree. The Christmas season starts in my house on my daughter’s birthday. Scheduling parades is out of my purview, but I’ve been looking for a production of A Christmas Carol without success for many years. And tonight, just in time for her 18th birthday, on the very night 18 years ago when I saw my first production of this play, she gets to see it.
So yeah, I’m a little sad getting ready to see this play. When we come home, we’re going to put up our tree–this time, in a stand!–and put lights on. Tomorrow we’ll decorate it, and the season can begin.
My little girl turns 18 tomorrow. We celebrate tonight with A Christmas Carol.
Meg Currell is the mother of a beautiful Christmas OI baby who isn’t a baby any longer.
The other day, I was shopping for baby clothes for an expectant friend who’s having a girl. Looking at onesies and booties and footed pajamas, I was washed with nostalgia for the days when my girl wore tiny clothes, a phase that lasted for years because of the charming OI growth deficiency. It did save me money on clothes. As I fingered the soft fleece of a pair of booties, I thought “I can’t buy these–they’d be too hard to put on.” The footed pajamas, however, would have been perfect for my daughter when she was very small, because they unsnapped from the neck all the way to the ankle. As long as she didn’t have a femur fracture, they’d be great!
my daughter and me about ten years ago
And then I remembered that I didn’t have to think about baby clothes for a baby with fragile bones anymore. My friend is unlikely to have a baby with the exact same disorder my baby had. With a sigh borne of bittersweet memory, I turned away from the perfect broken-clothes and bought the cutest things I could find irrespective of ease of use.
A few days later, my daughter wrote a college essay using her worst fracture as an example of overcoming difficulty. She was seven years old, and within three days endured a fracture of her right femur, tibia and fibula. It was one of the darkest weeks of our lives, as it happened during the same week as September 11, 2001. Those were days when we held our breath every time we went over a bump in the car, when a child brushing past her in class posed a real fracture threat, when I regularly tailored clothing specifically for her.
Reading her essay, I was struck by how long it’s been since she had a fracture. She’s had the odd pain in her clavicle or scapula over the past two years, but nothing rising to the level of needing a splint. The last time we made a plaster splint for her was when she was in junior high, a period during which she had five surgeries. Essentially, since freshman year of high school, she’s had few if any major fractures.
I remember hearing that fractures taper off when the kids get older. I really couldn’t envision a world where I didn’t carry ace bandages and Darvocet everywhere we went. I couldn’t imagine being able to leave her at school without thinking about her staying safe every second of the day. The thought of letting her friends pick her up–literally and figuratively–and drive her to the mall used to give me palpitations, and yet here I am, counting down the days until she goes off to college. And right now, I’m pretty cool with it.
She DID get better. Her bones got less fragile, through a miracle of pubescent ossification or increased muscle strength or combination thereof. And she’s now so very “normal” that most of the time, I don’t know where she is or what she’s doing.
So for any new parents out there, for any parents of younger kids who fear they will never be able to leave their child’s side, for those crying tears of despair over their seven year old’s marathon triple-leg-fracture-week, hang on. I know it’s hard now, but really–honestly–it does get better.
Meg Currell managed to write this post without shedding a single tear–and then she went looking for the picture. She’ll be fine in a day or so.
A friend shared the story of Bob Marshall, a delegate in Prince William County, Virginia, who claimed that children with disabilities were “punishment” for the mother having had an abortion previously. His exact words were:
“The number of children subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any nature takes its vengeance on the subsequent children.”
Here’s the article in full.
Why, I oughta….
This guy posits a couple of things I find personally and philosophically repugnant. First, Marshall makes an assumption that all women who give birth to a child with a disability have previously had an abortion. And then he suggests that “nature” (this is how I interpret what he said) wreaks vengeance by causing disabilities in subsequent offspring. That somehow “nature” is an entity that has a sense of betrayal and can exact revenge for having been thwarted.
Of course, he has no factual basis, no scientific proof to back up his outrageous claim, not even a good-old-fashioned old-wives-tale excuse for uttering something so reprehensible. His apology was just as defective as his original statement: he sidestepped any blame and called the ensuing response a “misimpression” (sic).
“I regret any misimpression my poorly chosen words may have created.”
Politicians lately seem to think that it’s okay to say whatever they want and then blame the listener for being too easily offended. On this I call “BULLSHIT”. You are responsible for your words, sir. What comes out of your mouth is your responsibility.
What he fails to address in his “apology” is the deeply offensive insult he delivers to all people with disabilities. To say that the existence of a person with a disability is “punishment” negates the humanity of disabled people, strips them of their dignity, reduces them to an ignominious effect in a false causal relationship. In this simple phrase, he nullifies the integrity of people with disabilities, and makes light of their struggle for basic acceptance.
Mr. Marshall, I speak for my daughter (and, if it’s not too bold, all mothers of children with disabilities) when I say “shut your ignorant mouth.” And while it is none of his (EXPLETIVE YELLED VERY LOUDLY) business, I want to state for the record that I have *not* had an abortion, but have a non-disabled son who was born four years before my daughter with a disability.
This spate of “poorly chosen words” coincides with a time when I’m spending a lot of time with people who don’t know what OI is, have never had a child with a disability, and barely know anyone with a disability. In the last few weeks, I’ve been explaining my daughter’s disability repeatedly, and I find myself falling into some old patterns. So while we’ve got a moment, I’m going to compile my greatest hits of disability ignorance in one place, for your outraged pleasure.
–What went wrong when you were pregnant? (nothing. Pregnancy was very easy for me)
–Did you do drugs/drink a lot of alcohol when you were pregnant? (none)
–So, you gave your daughter OI?
–Does she hurt when she breaks a bone? (get this one a lot)
–Didn’t you drink any milk when you were pregnant?
–Was she adopted?
–Do you have OI in your family? (I’m 5’9″ and have never broken a bone in my life; her father had never broken a bone either)
–Did she get dropped when she was a baby?
and then the not-related-to-her-birth questions…
–What’s the point of her being in regular school?
–She’s probably never going to drive anyway, so why bother doing Driver’s Ed?
–Can she talk?
–Will she ever walk? (yes, but she is only knee-high to most adults. Why would she?)
–Where are her feet? (usually, hidden in her pant legs)
–Couldn’t you just give her more milk?
–How did you break her?
–You must not be a very good mother if your child keeps breaking bones
(the last one is my favorite.)
I am sure other OI parents (and other parents of children with special needs, for that matter) have a whole host of stupid things people have said to them. Let ‘er drip, right here, and share with the world the incredible depths of ignorance you’ve been privileged to witness.
Think of this as a group therapy session.
Meg Currell has gotten over her rage, and now is bemused at Mr. Marshall’s idiocy.
On the TV show Parenthood the other night, the character named Max, a pre-teen who has Asperger’s Syndrome, was arguing with his gym teacher about participating in class. Max wanted to sit on the sidelines instead of submitting himself to torment by his classmates. His teacher insisted that he play. Max pointed to a student who was sitting out, a boy in a wheelchair, and said “He’s sitting out-why does HE get to sit out?”
To which the teacher responded “He’s sitting out because he’s disabled.
(Of course when I saw that, my claws came out almost audibly, like Wolverine’s)
Max pushed the issue, saying “I’m disabled too. I have Aspberger’s.” And he sat next to the boy and became instant best friends. That’s what always happens, right? People with disabilities are ALL friends with each other, like all Canadians know each other, and Asians only date other Asians (sorry….a little Glee grudge.)
The gym teacher’s attitude that it’s normal or expected or acceptable for kids with disabilities to sit on the sidelines and play video games pushed my buttons. (the fact that the parents in the show didn’t address this issue with a meeting with school officials is the subject for another blog.)
Some years ago, when my now-18-year-old-daughter was in middle school, I went on a crusade to make sure she had as much physical education activity as possible. No, not just “physical activity”, but physical EDUCATION activity. I think I’ve written about it before, but here’s the short version: in elementary school, she was always included in PE. The teacher and her aide went out of their ways to adapt activities for her, to include her whenever they could. Middle school presented a host of barriers to such inclusion, among them the attitude of the PE director. We had huge meetings about PE in middle school, meetings with 17 people in attendance–just about PE–and ultimately resolved nothing. My position was that if she wasn’t going to be able to actively participate in PE–get her muscles moving, raise her heartrate, do some cardiovascular activity, then I wanted them to pay for a pass for her to use a local pool to do her PE offsite.
During the enormous, 17-person meeting, the PE director at the middle school said some of the most offensive things I’ve ever heard in defense of the school’s resistance to my plan, including:
“My wheelchair kids LOVE to be the referee!”
“My kids in wheelchairs LOVE to keep score!”
“watching PE (from the sidelines) will teach her what she needs to know about the different sports, so later on when she goes to parties, she’ll know what’s going on.”
Yes, the PE director really said that. PE class is important for teaching kids in wheelchairs enough about sports to have conversations at Super Bowl parties to be held sometime in the future. See, *I* actually thought PE was important for giving kids regular physical activity, to establish a habit of being active so that later in life, the kids would have a better shot at staying fit. But no, according to this PE director, the goal is to give kids something to talk about over nachos while watching Da Bears lose.
But it’s funny how things turn out.
Despite never having been in a flag-football game, never enduring one single burpee, never having dodged one single ball, my daughter is now the biggest sports fan in the entire house. She receives text alerts on her phone about college football and basketball games. She watches in rapt attention every game of the Big Ten season, wears her team colors every week; can recount in detail the Little Giants play that won the game for Michigan State over Notre Dame; watches basketball games all by herself, keeping track of three point shots and fouls and offensive rebounds. She keeps the Chicago Blackhawks season schedule on her personal calendar. She can explain icing to her brothers (who need help occasionally) and tapes every Blackhawks game, even the ones she watches, and updates her dad during games he can’t watch. She is our family’s Bob Costas.
How can this be? How could she have learned the first thing about sports without having been the scorekeeper in gym? Surely it’s some kind of miracle!
Well, no. My daughter learned the same way girls have been learning about sports for generations: from her family. I come from a basketball family, my husband is Canadian, and we’ve learned to love Big Ten football. We watch football, basketball, tennis, cycling, and are avid (rabid?) Blackhawks fans, and my daughter jumped on the bandwagon and took over the steering wheel. That’s just who she is.
So every time my daughter tells me about an upcoming hockey game, and reminds me to clear my schedule so we can watch, I think of that idiot PE director and her narrow view of disabled kids as servile and inferior. The school wasted five years arguing against my daughter forming fitness habits to take her into adulthood because they couldn’t see my daughter as anything but a kid in a wheelchair.
And thanks to our amazing PT, my daughter now swims twice a week and has land-based PT that raises her heart rate, engages her cardio-pulmonary system, and gets her out of her wheelchair in weight-bearing activities three days a week. My kid has abs of steel, and is probably more fit that most of the kids in PE class.
That PE director can take her shiny silver whistle and shove it up her ass.
Meg Currell is pretty proud of her sports-minded daughter and two artistic sons.
My daughter, as you know, is looking forward to going away to school next year. It’s something I think about for only a few minutes at a time, because if I spend any longer on it, I start hyperventilating.
You think I’m kidding.
A couple of the schools we visited would theoretically work for her. I’ve seen other OI kids grow up and go away to college. At my university, long before I even *had* a child with OI, I knew a woman with OI who had graduated from my school and went on to be a full-time employee on campus. I know it’s possible. I’ve seen it happen.
But this is my child, and like it or not, I only care about her. Stories of other people’s experiences or success do little to take the edge off of my anxiety. As positive as I try to be, I often meander into frightening territory. I imagine my tiny daughter having fallen in her dorm room with no one around to help her, or getting struck by a car in a parking lot (cars can’t see her behind the car when they’re going in reverse), or–and maybe this is the worst one–her chair tipping over on a crack in the sidewalk, resulting in her getting injured.
That’s all I can articulate before my hands start trembling and I have to breathe into a paper bag.
Last weekend my daughter and I were in New York City. We took the New Jersey Transit train from Newark into Penn Station every day, a trek involving a shuttle, two trains and four elevator rides. My daughter fell in love with New York a couple of years ago, and has longed to live there ever since. This time, I really thought about what it would be like for her to live in New York, how she’d get around, what it would be like for her in the crowds, and where she’d live. I’m sure there are viable places for her to live, and I’m sure, as social as she is, she’d find people to surround herself with.
But the available methods of transportation were downright depressing. Only *some* of the subway stations are accessible. All of the city buses are (reportedly) accessible, but the one we rode wasn’t in very good shape, and the driver had to stop the bus, get out, fiddle with the ramp mechanism, get back in, fiddle with the tie-downs, and then resume driving. Plus there was a drugged-out man in the back of the bus–where my daughter HAD to sit because that’s where the tie downs were–awakened from a full-on snoring stupor and attempted to pull his pants down and urinate on the floor. Only the calumny of a fellow passenger thwarted his egregious behavior.
The trains were inadequate too. Just to get on the train, she had to find a conductor, tell him she needed help getting on the train, and wait for him to *find* the “bridge”–a portable metal ramp–just to allow her to get on. Then she had to wait for the conductor to shoo everyone else out of the accessible seating, which was–of course–separate from all of the other seating and right next to the bathroom. As a result of the missing bridge issue (where’s the confounded bridge?), she was always last on the train and last off. It takes twice as long to get anywhere in a wheelchair, and this process prolonged the trip immeasurably.
And then there are the miserable conditions of the sidewalk ramps, where they do exist, that make me positively sick with dread. The thought that her tire could catch the edge of one of the ragged curbs or sidewalks and she could topple over….oh…I need to stop thinking about it.
I don’t want my girl to have to deal with *any* of that.
The final straw, however, was the elevators in the train station. Without exception, every elevator in Penn Station reeks of urine (and worse) every minute of the day. While that isn’t a big deal to ambulatory people, who can choose to take the stairs, people with mobility issues have no choice but to use the elevators, and are stuck in the miasma of stench for sometimes extended times. In order to find the way out of the train station to street level, we had to get on and off that elevator some days four or six times. Each time, I could feel my gorge rising in my throat. To handle the second and third trips, I had to cover my nose and mouth with a scarf. In one elevator, there was actually a pool of liquid in one corner.
The idea of my little girl–or anyone with a disability–having no choice but to travel several times a day in a 6X4′ box sluiced in excrement makes me furious. At one point on our trip, I turned to her and said “please, I beg you, do NOT live here.” I was smart enough to make the request while we were just exiting a port-a-potty-scented elevator. I believe she was convinced.
When we were in DC several years ago–when she was even younger and less independent–I was comfortable with the transportation options available to her, and downright impressed with the accessibility not just of the city of DC, but with the surrounding areas. She could manage the entire process of getting from our hotel an hour outside of DC into the city on public transport without even once needing to ask for help. And none of the elevators reeked of piss.
No matter where she goes for school, I will worry. I know I won’t sleep for many weeks. I may end up moving with her. But that can’t last her whole life–there will be a time when we’re both ready to be independent of each other. I know this. But I hope and pray that she chooses a place to live that doesn’t require her to step around excrement just to get through her day. There’s something debasing about having to deal with that every day. She’s going to have enough to deal with without adding that to the mix.
I know there will be a day when I don’t fret about these things. But from the looks of things, that day is still a long way off.
Meg Currell is getting ever more anxious. Can you tell?
Dear Rep West
I heard you’re kinda pissed about a year-old Americans with Disabilities Act regulation requiring all commercial pools to be handicapped accessible. According to this article (http://www.huffingtonpost.com/2012/03/28/allen-west-handicapped-access_n_1385186.html) you’re pretty hot that hotel owners have to spend their own money on this “wasteful exercise.” And that the hotel facilities have to make these changes in a “short amount of time” in order to comply with the law. And that you think making commercial pools accessible will “accomplish nothing.”
I’ve heard this kind of derisive nonsense many times. Some people seem to think that the disabled have had everything handed to them. Some people violently oppose additional accessibility requirements provided in the law. “What more do they want?” I’ve heard, or “They already get the best parking spots!”
“Accomplish nothing” is the line that sticks in my craw.
What a horrible inconvenience it must be for able-bodied people to install a ramp in their pools. How terrible it is to provide a single parking spot–out of dozens–closer to the door! And having to use a portion of your vast profits to make doors easier to open…well, that’s just a tragedy.
Certainly WAY worse than, say, having your legs blown off by a landmine in Iraq. Or being born without hands that would allow you to turn a knob. And the debilitating pain of muscular dystrophy is NOTHING compared to the difficulty hotel owners face in complying with a law they’ve known about now for a full 12 months.
The hardship hotel managers face in picking up a phone and hiring a contractor–and you HAVE to know that contractors are impossible to find in these economic times–to complete a job within a 12-month window is positively catastrophic.
Mr. West, you speak for the millions of people who can’t think outside of their own bubbles. The ones who look around themselves and say “I’ve got everything *I* need, why should I give a moment’s consideration to anyone else’s needs?” It’s the bane of the comfortable existence, the curse of prosperity that makes people so insensitive to others whose lives are much more difficult–sometimes impossibly so.
Because when you sit on a comfortable couch in a well-lit living room watching a 36″ TV with a cold soda in one hand and a remote control in the other, it’s easy to ignore the fact that, somewhere, a personal assistant is helping a disabled person out of his wheelchair and onto a therapy table; or a woman is removing her prosthetic arms just to give her shoulders a break for the evening, and has no way to feel the cold soda; someone else sits alone in a dark room, no lights, no TV, trying to save pennies on the electricity bill, trying to stretch the paltry paycheck they earn on the only job they could find bagging groceries. Yes, clearly, disabled people have had EVERYTHING handed to them.
What a frigid, mercenary heart you have, Mr. West, that you believe that hotel owners are the ones who deserve your advocacy. What twisted set of values defines your behavior when you can attack so vocally one of the smallest and weakest populations in the nation in favor of multi-billion-dollar corporations. You seem to forget that people with disabilities can’t just take a break from being disabled, stop needing assistance, and just do what non-disabled people do. They have to deal with the disability every second of every day. Many times, due to the greed of businesses who don’t feel like complying with the decades-old accessibility laws, some people with disabilities can’t even get INTO most of the buildings able-bodied people can enter.
I once saw a sign that read “Disability is the is the only minority that any one of us can become a member of at any time.” You’re a veteran, Mr. West. Do you mean to tell me you don’t know a single person who went from able-bodied to disabled in the blink of an eye? Not ONE? And what will you tell those veterans in your district who have come home from Iraq having joined that minority group while defending our country? How will you explain your position to them?
People with disabilities–all kinds of disabilities, Mr. West, from blindness to mobility issues to mental disabilities–strive to live their lives as normally as possible without having to beg for every single little bit of accommodation they need. Attitudes like yours relegate the disabled to a position of dependence, forcing them to ask for help wherever they go. Why can’t the hotel owners simply comply with the TWELVE-MONTH-OLD law and put in a lift? It might cost about what an elliptical machine or two would cost for that shiny–infrequently used–fitness room down the hall.
And on the off chance that a disabled person has the means to afford a swanky hotel in your neck of the woods, the least you could do is make sure they can enjoy the f*cking pool.
Meg Currell is the mother of a physically disabled young adult.
Seventh Circle of Hell
My daughter turned 18 a few months back. Long before she aged into majority, a wonderful old friend who happens to be a social worker with the state took me aside and gave me the inside skinny, the keys to unlocking the complexities of the social services system in this the “47th state”. I was grateful for the advice, and put on my to-do list all of the things she told me to do.
It’s not that I ignored her. I procrastinated. I had other things to do. I was working full-time at a job that sapped all of my mental energy, and couldn’t bring myself to look at the pile of things I was supposed to do. To be fair, I had a couple of other things to do, but that’s beside the point. I’m making excuses.
Then she turned 18. And I kept thinking “okay, I should do this now…”
It’s May. I have finally started the process. My daughter is now–once again–“in The System”. Oh, yes, she was once fully embedded in The System. Born with a disability, she was on the state’s radar until the day I married her step-father. At that time, we were informed that my husband’s income made her ineligible for services. Some reputable and experienced voices have told me otherwise, that because my husband didn’t adopt her, his income didn’t count (or something–I’m paraphrasing), but I was so incredibly relieved to be OUT of The System that I simply didn’t put up a fight.
Now I remember why I was so relieved.
My first call was to Social Security, to sign my daughter up for SSI. That part went simply enough, although the first week brought a wicked battle of phone tag with resulting Official Letters of Doom from the state informing us that, because they hadn’t been able to get hold of us, we were ineligible. Their automatic letter system has an itchy trigger finger and, apparently, is in bed with the paper industry. Oh, if environmentalists only knew the amount of paper wasted on letters telling applicants that they aren’t eligible, then that they ARE eligible, then that they need to submit a lock of hair and sworn testimony from their lactation specialist that they have never ever jaywalked on Tuesdays, then, finally, that they are banished forever and ever from state services because the social worker missed our return phone call.
Forever and ever, that is, until the following Tuesday, when we finally spoke to the social worker, who said “oh, those letters are sent out automatically. They don’t mean anything.” Yep. Greenpeace needs to know about these people.
The next agency we had to call was the Department of Rehab Services, or DORS. Again, I know for a fact my old friend’s advice would have served me beautifully at this moment, but I am a closet imbecile, so I sallied forth on just my wits and a general phone number. Our first phone call went a little like this.
“Hi, I have a daughter with a disability and need to get her into the DORS system.”
“Okay, what’s your daughter’s disability?”
“Brittle bones,” I try not to give the Latin name, as it tends to make the heads of people outside the OI world explode.
“Brittle bones? That’s a disability?”
“Yes,” glad they can’t see me rolling my eyes.
“Well, what can she do for herself?”
“Well,” I say, trying to set aside my annoyance and answer as thoroughly as possible, “She can do a lot of things for herself….but she can’t walk, and she can’t reach things abover counter height, and…”
“Hold on, let me transfer you.”
Their hold music is abominable.
“Yes, hi, I have a daughter with a disability, and I need to get her started in the DORS system.”
“Okay, what is her disability?”
Sigh. “She has brittle bones.”
“That’s a disability?”
“What services were you looking for?”
“Well, I’m not sure what services are available…”
“Does she need home services or VocEd?”
“Um….she’s going to university in the fall, and I know she’s going to need a PA…”
“Hold on, let me transfer you.”
The hold music isn’t any better the second time.
“Yes, hello, I have a daughter with a disability, and I’m trying to get her signed up with DORS.”
“Okay, what is her disability?”
“She has brittle bones.”
“That’s a disability?”
“Yes, that’s a disability.”
“Well, what can she NOT do?”
My sighs are getting less silent. “She can’t walk. She uses a wheelchair for her primary means of getting around.”
“Oh, she’s wheelchair bound?”
“I prefer to say she uses a wheelchair, but you’ve got the general idea.”
“Okay, let me transfer you.”
Hold music now sounds like the most obnoxious screamo speed-metal goth-punk John Cage knockoff ever created.
“Hi, I have a daughter with a disability, and I need to start the process of getting her in the system.”
“Oh, right, let me do your intake form. Hold on.”
FINALLY! I thought I was in an infinite loop of disability services applications. A DORS mobius. DORSius.
“What’s your daughter’s disability?”
“That’s a disability?”
My teeth are now gritted tightly. “Yes,” I manage.
The rest of the form is standard-issue name/rank/serial number stuff. In five minutes, she had asked everything necessary, and told me I would receive something in the mail. I couldn’t hang up fast enough, so great was my relief that I had achieved the goal of getting my daughter “In The System.”
The next day, while in the drive-through at the bank, my phone rang.
“Hi, this is Susie from DORS.I have a few questions for you.”
“Okay.” I fumbled to put my cellphone on my shoulder.
“All right, um…what is your daughter’s disability?”
“That’s a disability?”
THIS is why I was so glad to be out of the social services racket. THIS is the kind of phone call I dreaded, the kind of individual with a limited understanding of disability. Oh, I understand that they must verify my daughter’s eligibility, that they can’t just give money to any nut job who calls up. But…really, is the initial phone call the time or place to make the final judgment? I mean, all of the paperwork will require doctor’s notes, home visits, all kinds of steps designed to verify that my daughter has a physical disability. Having the receptionist quiz me over the phone about my daughter’s diagnosis doesn’t bring DORS any closer to verification. Any nut job can lie on the phone.
There is a real downside to being In The System. This is it. Having state agencies skeptically question the very things that alienate you from society, having to prove that you’re disabled “enough” when you can’t even get out of your house without help, is demeaning. Degrading. Shaming. But I will press on, push past the dragon at the gates to get the services my daughter needs. In the meantime, you all get to hear my complaints and triumphs, of which I’m sure there will be more than a few.
Like today, when I called DORS back and spoke to a lovely woman who gave me all kinds of information I hadn’t heard before, and pointed me in what I hope is the right direction. There are wonderful people hidden everywhere, you just have to keep looking.
Meg Currell is dreading graduation day and lots of other landmarks coming up for her daughter.
It’s been a while, but we’re broken. Good and truly broken. She originally thought the pain she felt in her right scapula was stress from taking AP tests and prom and final exams and prepping for graduation and choosing a college–which are, frankly, stressful on their own–but a full week of pain told us something more was going on. An additional week using a sling and then splinting her arm to her torso didn’t improve anything, so to the doctor we go.
This has been a rough Spring for everyone, but my daughter has had the worst time of it. Family/academic/social stress are bad enough, but now she’s been taken completely out of commission. A person who uses a manual wheelchair can’t go anywhere on her own with one arm. She can’t scoot as she normally does, because it hurts. She can’t get herself food, can’t dress herself, can’t use the bathroom alone–she’s been returned to the wholly dependent state in which she existed when she first started preschool.
I *hate* this for her. I am so angry at the injustice of this situation I want to scream–but at whom? No one is at fault. She didn’t–as she likes to joke–get into a bar fight. All she did was bust her buns studying for finals. Maybe she spent too much time in one position. Maybe she didn’t get adequate rest. Maybe I picked her up wrong. We’ll never know.
So at this time when she should be enjoying her first real freedom, she’s lashed to my side, constantly in pain, and has to wear an ace bandage around her ribs on the outside of her clothes in 90+ degree heat. She had to wear a sling over her graduation gown. Nice way to start the summer after her senior year.
I know I complain a lot on here, and I should be sorry to add to it. But as much as we try to deal with our brittle bones involvement with dignity and strength, sometimes I *really* hate what it does to her. Two weeks ago, she was completely independent except for transportation. Now she’s COMPLETELY dependent. In two weeks this happened. Yes, I know she’ll get back there again, but damnit this isn’t fair.
I am grateful for this (you can tell I’m forcing myself, can’t you): we’ve gone all four years of high school without a significant fracture. That’s very good, and gives me great hope for her college years. The fractures have decreased in frequency and severity, as predicted. And maybe that’s why this is such a jolt for us. Maybe we’d take it more in stride–maybe I’d take it more in stride if fractures were still happening frequently.
Maybe someone out there in the OI world can help me make sense of this. I just can’t.
My daughter is in the final stages–which sounds remarkably like death throes–of filling out paperwork for state agency assistance. She turned 18 in December and we’ve been working on these for a while now. She’s filled out papers for the Department of Rehabilitation Services (DORS), for Supplemental Security Income (SSI), and for Medicaid, but there are somehow FOUR different agencies for which we are applying.
Frankly, we’ve lost track of all of the agencies to whom we are applying, who wants what and when they want it. One agency has told us that before they can process our application to *them*, we have to have applied for services through a *different* agency first. It’s possible we’ve already applied for that agency, but they need documentation.
Another agency sent two different sets of paperwork for her to complete. They arrived separately. They are–apparently–for two different types of assistance, though there was nothing included in the envelopes that indicates why we received either one, what they’re for, or what part of the agency they should be returned to. I’m tempted to put them both in the same envelope and let the agency sort it out. I suspect, however, such insolence would be rewarded with denial of services.
But my FAVORITE part of this whole process is that every single piece of mail we receive from all of these agencies has the EXACT SAME NAME in the return address. Every. Single. One. I’ve been trying to let my daughter manage this process herself–since she’s 18 now and will be doing it from this point forward–but it’s impossible to walk away when the mountain of papers that needs to be filled out grows weekly. Plus, it’s confusing enough for adults who know how to navigate the system, but leaving a kid to do this on her own is just cruel. So we’re trying our best to teach her as she goes along, but these agencies do not make it easy.
The attached video expresses beautifully the frustration of dealing with bureaucracy. Her battle is about immigration, but the same frustrations exist. About 3:30 into the video, the singer loses it. I’ve totally been there.
Meg Currell is trying to resist the tractor beam of state agency hell.
A few weeks ago, I started watching a show called “Push Girls.” (it’s on the Sundance Channel). I put it on because I’d seen it mentioned on Twitter a couple of times, and had no idea what it was about. Finding out it was a reality show about a group of women who use wheelchairs was a nice surprise. I watched the first episode and part of the second.
My daughter came into the room just as the second episode was beginning, asked what it was about, and watched a little of it with me. Later, she went back and watched the first episode by herself. She’s the kind of kid (by “kid” I mean “offspring”, not “young person”. Daughter, if you’re reading this, I don’t mean to diminish you) who does *not* like to be pushed into anything. She has to come to all of her decisions and opinions on her own.
We joke in my family about my Libra indecisiveness. Picking out clothes for an important event–or even just for work–can be an excruciating challenge. Deciding what to make for dinner can cause such grappling that food doesn’t appear on plates until well after the dinner “hour” (what is that, anyway?). It’s not a constant problem–I *do* manage to get through 80% of my life without ever questioning the wisdom of putting on my left shoe before my right.
Because Libras have a reputation for being indecisive, we’ve always blamed my “issues” on that. My son, also a Libra, has many of the same qualities. He’s learned to use his powers for good.
My daughter, though, has apparently simply gleaned her indecisiveness from watching me. I am so chagrined about this I’m almost embarrassed to say it. And she doesn’t even have the excuse of being a Libra!
As loyal readers know, my daughter is *well* down the path of making the necessary arrangements at the university she’s chosen to attend. This was not her first choice school, and not really even on her radar, so we had some catch-up work to do to find out if she could even manage there. But it turns out she could, and the staff have been very helpful getting her questions answered, and helping her get all of the necessary paperwork finished and turned in and ready for the next step: registration, which happens July 18. We’re ready to go, really, and felt like everything was finally going smoothly.
Cut to Friday. My daughter opened a large, shiny envelope from one of her top two universities. It had been rerouted by the post office, which delayed its arrival, but it did, in fact, contain the good news that she was accepted! Yay! Another notch in her belt! Woo-hoo! She can say she got admitted to this wonderful school! And now she can move on, right?
Except my daughter, my beautiful, quixotic daughter, she of the chocolate brown eyes that melt me every time I look at her, of the brave jut of the chin she forces when encountering new (and sometimes stupid) people, she of the straight-A (well, almost) grades senior year…she told her dad to tell me that she might could maybe wanna think about possibly going to this OTHER school instead. “Could you tell mom? I’m afraid she’s gonna hit the roof.”
Pretty close, darling one.
This Thursday, we’re packing into a car and driving to School #2. It’s only a 3 hour drive, and I have nothing else to do with my time this summer, and I *do* love driving, so why not, right?
Except…well, if you’ve got a disability or a disabled child, you know that *everything* takes longer. E v e r y t h i n g. So while we technically *could* do the tour and talk to housing and talk to disability resources and figure out whether the campus would work for her in her power chair, while it’s *possible* to look in a dorm room and make an assessment of whether the height of the bathroom counter would need to be adjusted, whether the doors on campus are largely impossible for her to open without assistance, while I’m optimistic she will be able to evaluate whether she “likes” the environment–and do all of this within the span of 10 hours–I’m not looking forward to the process.
Don’t even get me started on the nightmare of thoughts that go through my head when I consider her being on campus every day without me being 10 minutes away–or even an hour away, like I am with the university she is/may still go to. But School #2 is on a pretty sizable river. A beautiful, gorgeous outlook, delightful for most people to ponder, but for a tiny young woman in a wheelchair, that river, and the hill leading to it, present a physical challenge that makes my throat close up. Sure, she can get *down* to the part of campus that’s near the river. But can she get back up? Every day? What about when there’s snow and ice? What about when she’s broken?
We are very careful planners. We do like to have adventures, especially her and me alone, but we plan out where we’re going very carefully to avoid challenges like this, or to prepare contingency plans for challenges like this. And the river is just one possible challenge–we don’t even know what else we’re going to find when we’re out there. And I know we CAN do it, but starting the process of looking into what might possibly be out there in JULY doesn’t leave us much time. And I know in our haste we’re likely to forget something critical.
I start thinking like that and I fixate on an image of her speeding down the hill in her manual chair straight into the swollen, gushing rapids. And then I can’t breathe.
Back when I lost my job in May, I thought, as many people do, “there MUST be some greater reason for being unemployed right now”. I think I may have just found it.
Meg Currell is quickly finding that life really never settles down, it’s just a series of complicated circumstances interrupted by short stretches of boredom.
When my daughter was very, very small, we used what we called a “stroller” to get her around. Provided by the local wheelchair vendor, the chair gave her table-height seating, appropriate positioning, and reclined fully, in the event she fractured. It was a great chair for her needs at the time, because she was so tiny, so delicate that there was no way she could push a wheelchair herself. Her arms and hands were so fragile and weak she couldn’t hold a pencil for very long.
Then, when she was three years old, she got her first power wheelchair, a Permobil, which was, at the time, the Cadillac of wheelchairs for OI kids. The vendor brought the chair to our house for a trial, and once she got used to the joystick, she maneuvered that chair every possible direction, including elevating it to table height and back down to the ground, where she could eventually climb into and out of it by herself. And at the time, just the thought of her climbing that high–four inches off the ground–was enough to keep me awake at night. The elevator mechanism, however, was perfect for a girl going into preschool, where the kids often gather on the carpet for “circle time”. This way, she could safely be down near the floor with the rest of her peers.
To this point in her life, she was a very timid, shy child, who buried her face in my neck when strangers would look at her. So different from her brother, who was bold and outgoing from the moment he could stand up on his own, she was more like me as a child; withdrawn, content to be on her own. Some of her timidity was, I was sure, a result of being so fragile, so breakable when handled by people who didn’t know to be gentle. She self-protected by staying away from everyone.
But oh, her first day at preschool with her new red Permobil showed me how very wrong I was. She drove up the ramp and into the classroom, and with barely a nod in my direction, she was off across the room. I watched her interacting with the other three- and four-year-olds, her eyes enormous and bright and alive, for the first time being truly part of the group.
And she was never the same.
My shy little girl became the center of laughter and noise and talk in every classroom she was in from that point forward. Her power chair gave her the courage to approach new people without fear of being injured by a carelessly flung hand or an over-enthusiastic playful kick. The chair provided a physical buffer between her and the other preschoolers, and she became this PERSONALITY, a brash, goofy, intelligent, playful child who drew people to her by dint of her incredible energy.
Far from being just like me, she’s just like my mother, who she never knew.
That girl will go to her freshman orientation at university next Monday. And as difficult as it’s going to be for me, I am going to have to drop her off at the main entrance and wave goodbye, and remind myself of that first moment in preschool, when she stepped out from behind her mother’s protective grasp and became her own person. With the right tools at her disposal–a safe chair, a few physical accommodations on campus, and a powerful personality–she will become someone completely different once again. Lurking behind her melted milk-chocolate eyes I think I see a charismatic leader, one who needs only the chance to speak for herself, without the filter of her mother’s thoughts or the inhibitions of the provincial suburban mentality.
I just wish–how I wish–I could invisibly watch her on her first day on campus, taking the first steps into this big world, the first steps into whatever big person she is going to be. I want to watch. I know I can’t. I won’t try. That would be damaging to her.
But my girl, my fragile girl who almost couldn’t hold a pencil, is about to become.
Meg Currell is pretending to be very brave.
Life in the 47th State
The doctor’s office was located in a run-down strip mall, potholes and shifted pavement interrupting the parking lot. We parked in the handicapped spot, located conveniently farthest from the door, and navigated past the dumpster up the ramp comprised of 3″ vertical gaps between cement slabs. A sign above the door hung crooked and broken.
My daughter and I had come for an appointment set for her by the Illinois Department of Human Services, Division of Rehabilitation Services. This appointment was an effort by the state to “gather more information” about my daughter’s “alleged” disability. The signed document from my daughter’s lifelong orthopedic doctor, her complete medical history and our statements (signed under penalty of perjury) weren’t enough evidence: they needed a doctor with absolutely no knowledge of my daughter or her disorder to make an assessment of how disabled my daughter truly is.
You can probably tell my attitude about this appointment wasn’t exactly open-minded. Not even a little cooperative.
Nevertheless, we signed in and took a seat in the dingy, eight-seat waiting room, alongside two other people. I could hear fairly clearly a conversation from another room, questions from a man, answers from a woman, and surmised that what I was overhearing through the paper-thin walls was a doctor and patient in an exam room. I was not encouraged by the lack of privacy in this office that already did little to rally my confidence. The carpet was stained, the chairs filthy, the surfaces sticky. Twenty minutes into our wait in the grimy waiting room, our cohorts were called back. More people arrived. And more. Eventually, we were twelve strong in a room suited to hold fewer than eight. One of our number was in a wheelchair, one used a cane, one was large enough to take up two chairs. It was not a comfortable fit.
We waited longer. Another 20 minutes later, the girl at the front desk called us back. In the strangest exam room I’ve ever seen–four beds that looked like massage tables, three ancient machines designed to measure unknown body functions, an assortment of mismatched and very worn hand towels, and a half-full laundry basket–we took a seat. I asked if we could close the door, and our host, slightly confused, said yes. She asked a number of basic questions about height, weight, age, then sent us back to the overfilled waiting room. Another four people came in. Two people left.
Finally, another doctor entered the building. We could see her beyond the open reception desk hastily rifling through papers on the counter. She opened the door and called us into the massage-table room. What followed was the standard line of questions we encounter with every new person curious about my daughter: What is the name of your condition? Have you broken any bones? Have you had any surgeries? Are you in pain right now? Can you walk? What do you take for pain? When were you diagnosed? How long have you used a wheelchair? Do you climb stairs?
These were not the questions of a doctor in any way informed about OI, nor did they take a true measure of the effects of severe OI on the life of a young adult. None of the questions dug any deeper than how my daughter presented right this minute, not what happens over the course of a day, or a month. The answers were greeted with clinical detachment in most cases, and in some cases, unprofessional exclamations of surprise. After a 15 minute interview, the doctor said we could go. She would give no hint to the results of her assessment.
I’ve heard for years that my state, Illinois, ranks 47th in providing social services. This is the first time I’ve seen that pejorative in real life. The program for which we were required to visit the doctor is supposedly intended to help people with disabilities pay for the services they need to adapt to everyday life, to be functioning members of society. Services like accessible housing, personal assistants, adaptive equipment are all funded in part by this agency. Some people, like my daughter when she has a fracture, will need personal assistants just to make it through the day. Without assistance when she’s fractured, she is unable to dress or feed herself, and in some cases, she can’t manage her wheelchair.
The process our state has put in place for applying for these services, however, is so difficult I can’t help but wonder if they’re hoping people simply quit rather than pursue efforts with an unyielding bureaucracy. This doctor’s visit is only one piece of the mysterious puzzle; we’ve been told our application hasn’t been received, that it’s been received but it’s pending, that we have been rejected for services, and that my daughter’s name isn’t even in the system yet. And this is but one of three state agencies to which my daughter has applied. We are in holding patterns with the other two; it’s possible we’re stuck in a bureaucratic morass with at least one of those, and we don’t even know it yet.
It is very clear that the system is underfunded, understaffed, and over-utilized. I am certain a certain amount of fraud has occurred to warrant such laborious application oversight. The staff are clearly trained to be skeptical of anyone making an application, to question repeatedly whether this is a “true” disability. We were greeted with this warm reply ourselves, on the phone when we first made contact. But the system that’s in place inherently reduces people to our basest emotions: need, hostility, mistrust, despair. To force already marginalized people into the most squalid, ill-equipped medical office is to reinforce the belief that they aren’t worthy of decent medical care.
This morning, because my daughter was applying for services for the disabled, she was stripped of her dignity. This system effectively pushes the disabled into the “second-class citizen” classification.
All I could think this morning was the line to one of my favorite songs from church: “Whatsoever you do to the least of my brothers, that you do unto me.” By God, we as a society should be striving for better than this.
Meg Currell is a little angry tonight.
A couple of weeks ago, my daughter was all set to go to university in the Big City. She’d made the decision, we’d met with the appropriate Official People, toured a dorm/cafeteria/classroom, discussed Everything Under the Sun, filled out all the paperwork, and made her Officially Official. She even bought herself a Big City sweatshirt.
Then she received a piece of mail that had been misdirected, lost in the We Moved shuffle. This piece of mail said “We are a much BETTER university! You’ve been accepted here! We want YOU”. What girl can resist such an invitation?
Shy, a little ashamed, my daughter approached my husband, who is known as the more gentle of the parents (hack! cough! choke!) and said “Um, Dad? Yeah, um, I think I should maybe go take a look at the Much Better University. Would you please tell Mom for me?”
And my husband, the brave, strong man that he is, tiptoed into our bedroom, where I was supping on the bones of my enemies and washing it down with the blood of anyone who had ever looked at me cross-eyed. Being careful not to look me directly in the eye, he whispered the magic words “Honey….don’t get angry…”
As anyone who’s ever been married knows, this is the exact phrase you should utter if you want to avoid antagonizing the easily enraged.
Gently, gingerly, my husband outlined the situation. He pointed out the wisdom of my daughter’s request. He indicated the calendar, on which even I could plainly see that our window of opportunity was diminishing. In my haze of fury, I don’t quite remember my immediate response, but eventually, after cleaning up all the broken furniture, we decided to visit Much Better University right away.
When she had applied to Much Better, I was unconvinced of the safety of a school precariously positioned on the ridge over a river. I was sure another flood would come and wash away my girl in her not-at-all-buoyant power chair, and that would be that. I actually had a nightmare about it, and took the remembered fear to our visit.
What we discovered upon arrival was a very reasonable, open environment that my daughter can easily navigate completely on her own. There are some aspects to the physical environment of Much Better that were really and truly MUCH BETTER than Big City. I found that there was a knot in my stomach comprised of Big City problems. That knot slowly loosened as we learned more about Much Better. We met with the appropriate Much Better Official People, toured a dorm/cafeteria/classroom, discussed Everything Under the Sun, filled out some of the paperwork, and made her Officially Almost Official.
On the drive home, the decision was made. My daughter would withdraw her intent to attend Big City and forward her intent to attend Much Better. That night I slept like a baby for the first time in weeks. I even cleared away some of the carcasses of my enemies so my husband could sleep next to me.
Sometimes, letting your child change her mind at the last minute is absolutely the wrong thing to do, like when my daughter wanted to use some of her school money to buy herself a new laptop to “check it out”. She already has a 6 month old tablet that works perfectly fine. In that instance, I prevented her from changing her mind. In this instance, however, looking at Much Better University resulted in the best possible decision. She’ll have the chance for a *good* education–not just *okay*–and she’ll be in an environment that she can manage on her own. Unless she’s got a broken bone, I don’t think she’ll need an aide to get through her day.
But most importantly, my daughter is finally excited about going to university. I hadn’t noticed before, and had attributed her hesitancy to overall fear of leaving home, but she wasn’t thrilled at the idea of going to Big City. She was resigned, I see in retrospect, accepting her fate. But now, with Much Better in her sights, she has changed; she’s jabbering about class schedules and buying books, coordinating her bedspread with her roommate’s, deciding on which coffee to buy for her Keurig (it really IS adapted equipment for her, believe it or not) and generally bouncing through the rest of her summer days.
I don’t know that she’ll be perfectly safe at Much Better. I don’t know that Big City would have been a bad place for her. There’s no way to know that. But from where we sit right now, it looks like she has selected the best of the options available.
And I’m perfectly okay with that.
Meg Currell is reclining on the deck, sipping sun tea, and savoring the few days left with her daughter.
She Made Me
I had my son two weeks past my 21st birthday. Having him brought me abruptly into adulthood, forcing me to be responsible for someone other than myself at a time when all of my peers were reveling in the freedom to eat Count Chocula for every meal.
When my son left for college four years ago, I grieved the loss of my companion, my champion, one of the people who knows me best in the world. In truth, I haven’t lost him; as predicted, our relationship didn’t die. It just changed.
My daughter leaves for college in two weeks. I’ve been grieving this loss since early May, before she graduated from high school. I can’t figure out why this loss is so much greater than that of my son. I love them differently, in varying degrees of equal parts. I remember when I was pregnant with her, and being afraid of not being able to love a second child because I loved the first one so much. A dear friend–a professor of mine–told me that my love would expand to accommodate both of them. And she was right–my heart expanded in ways I don’t fully comprehend.
From the moment I set eyes on my curly-haired, delicate pink girl, I swam in a sea of adoration for my children that beckons me to this day.
The instant she was born, I was set on a course that forever changed me. When the doctor told me that her tiny arm, her tiny legs were broken, and that she had a disorder I’d only vaguely heard of, I started growing a backbone that, until that moment, I didn’t know I lacked.
One moment of doubt and fear came days after she was born. I sobbed long distance to my brother, “I can’t do this!” to which he very wisely replied, “You have to: she’s your child.”
In that moment, *I* was born.
The broken bones, doctor visits, surgeries, IEP meetings, training sessions, late-night fracture cries, playground discontents, homework retrievals, bringing her home early from school; all of this made me her advocate, her voice, her protector. I had to step out of my comfortable corner and establish to the world that they were *not* going to hurt or ignore or neglect my little girl. Just because her bones break easily does not mean that she should be treated as “less” by an impossibly cruel world. I became a superhero when I put on the OI mom cape, and I set aside my shy wallflower persona for good.
But in two weeks, I have to hang up the cape. Sure, there will be the proverbial cat in a tree once in a while, but the days of rushing in and defending her from Big Ol’ Meanies are gone. Now, that’s her job.
And I am left with the simple Mom stuff, the wonderment at the fact that I can still feel the insubstantial weight of her, swaddled, minutes old, in the crook of my arm–and yet there she is, packing a coffee pot for her dorm. Her baby box of mementos sits in the closet next to her prom dress. Stacks of dorm stuff are growing precariously in her room, cheek by jowl with the baby blanket made by my mom. The yellow box of nail polish, crammed full of mini bottles of polish bought when she was very young, will be packed with her other toiletries, as she insisted.
She’s having a hard time deciding what not to take; I want her to leave something here for me to curl up with on that cold autumn day when her absence hurts like the ache of a years-old broken bone.
What I do after she leaves for college is a decision I have to put off for now. After she is moved into her dorm, after she has texted me every day (only for the first week), after I’ve talked to her on the phone the first Sunday after she leaves, then I can turn to shaping my life again.
I will have choices available to me, and a wide open schedule I haven’t known for almost 20 years. But I won’t be the same person I’ve been since she was born. My guarded nature, protective of my flexibility, will no longer be necessary. I will no longer need to tailor my employment choices to proximity to her. I started teaching piano at home because it allowed me to be home with her during the most fracture-laden era of her life. A plum work-from-home editing job fell into my lap, and I was lucky to earn a living that way for a few years.
But I no longer have to keep my OI mom superhero cape handy. Never again will I have to fly to the school to rescue her from a clumsy classmate or a power-hungry hall monitor or a broken down elevator. My days of conducting meetings with school officials to discuss how they will accommodate her wheelchair on a field trip are finished. Gone forever is any requirement to research and document the law regarding her participation in state-required physical education classes to present to a packed conference room.
What I have now–what I didn’t realize until this moment–is a unique set of traits not native to who I am, things that enhance my natural character, and provide a framework on which I can build. And the only reason I have that new framework is because of my daughter. She made me who I am in a very tangible way.
A couple people have asked me how it feels to be “done” raising my kids. I know from previous experience that I’m not quite done being “mom”, but I know what they’re asking. They want to know if I feel like I’ve done a good job with her, like I’m satisfied with how they’ve turned out.
I’m happier about my kids than I ever imagined I could be. I love knowing them as adults, seeing who they are becoming. They continually inform me about who I am, and who I want to be. But what I see more clearly, what I’m both fascinated and stunned by, is that I am about to peel back the layers of being their mom, of being OI mom, of being responsible for someone else, and finally see who I am.
Being OI-Mom forged me. There was fire and pressure, intense extremes that took me from the child I was to the adult I needed to be. I will forever bear the marks of this experience, the shape of the mold that formed me, but my time in the fire is over.
And it is her work with me that is now complete.
Meg Currell, mom to an (almost, but technically not quite) adult child with OI.
I have a first-aid basket overflowing with items beyond typical first aid. Alongside the bandaids and gauze pads and scissors are stowed skin gel for scars, leftover tubes of topical numbing cream (Emla), some keen plastic tape from the hospital that will stick to *anything* and never hurt when it’s pulled off, and ace bandages.
Lots and lots of ace bandages.
So many ace bandages I can’t even begin to count them. I find ace bandages everywhere–in every bathroom drawer, kitchen drawers, unused backpacks, winter coat pockets, the glove box in the car, kicked into corners of the laundry room…they’re everywhere. In another box, I have splinting supplies, rolls of plaster-embedded gauze to use for creating hard splints. We used to use these regularly in combination with ace bandages, our best method of immobilizing a fracture.
I have these two boxes of supplies at home, and my daughter has a bag full of ace bandages and splint rolls at school. What I’m tripping over here isn’t even half of what we used to have. But it’s a reminder.
I’ve got plastic place mats, which I used to use to stabilize her legs when she fractured when she was little. Dozens of place mats never once used for dining purposes, only splints.
Zip ties. Velcro. Child-size gloves. Memory foam–large pieces and small remnants–stuffed into closet corners. Sleeve and pant ends, trimmed to accommodate shorter limbs, populate the rag bins. Long-outgrown “break clothes”, those that work easier with fractures and splints, blossom out of unused dresser drawers and forgotten, top-shelf boxes.
All of these bits and bobs left over from having a child with OI seemed too useful to discard, but with adolescence, her fractures waned and ultimately stopped (knock on wood). The day to day fracture-coping items are no longer required. But they inhabit my world, artifacts of my OI life.
My OI mom life, now finished.
I’ve avoided sharing my daughter’s name on this blog. Anyone truly interested could have discovered the name with little trouble, but out of deference to my daughter’s privacy, I never divulged it. But her name has come up (outside of references to her) in the last couple of days, so it’s time for the big reveal.
My daughter’s name is Sophia.
I gave her this cherished sobriquet because one of my favorite college professors. It was an introduction to the Classics, or Greek Mythology (I forget the name of the course), and the instructor was full of knowledge about the origins of language. He would stride across the stage in his cowboy boots and jeans and corduroy jacket with elbow patches, delivering dramatic readings of ancient stories, pausing to parse the language into its smallest components, holding each piece up to the light, savoring the weight and depth of its meaning. Xenia, he explained, was the idea of friendship, of neighbors. Xenophobes are those afraid of strangers, of their neighbors. Philos–the love of something (philobiblist–lover of books, or bibliophile…anglophile–lover of things British)
I was taught–at least, I remember being taught (come on, it was 20 years ago now)–that Sophia meant “wisdom of the heart” as opposed to intellectual intelligence. A cursory search reveals “sophía (cf. saph?s, “clear”) – wisdom (properly, “clarity”). sophía) is the root of the English terms, “sophistication” and “philosophy” – literally (respectively), “the art of using wisdom,” “affection for wisdom.”]”
I would rather stick with exactly what Dr. Williams taught me, since it’s also what I’ve been telling my daughter her whole life.
When I heard that name in my freshman year of college, I decided I would use it if I ever had a girl child. Six years later, I had the chance to use it. It fit perfectly with my married name, though everyone would think she’s Italian. She’s not Italian, not even a little bit.
She was in the NICU for 10 days after she was born.
Sophia, almost 19 years ago.
I remember pondering the meaning of her name as she lay there connected to breathing tubes and feeding tubes and pulse-oximeters, ruing the fact that I missed an opportunity to give her a name that would help her get through this painful circumstance. Maybe, I thought, instead of a soft-skills name, I should have given her a warrior name, a name connoting strength, power, physical attributes.
As a Sophia, she was ahead of her time. There weren’t a lot of other Sophias in her grade, nor in the few years after hers. Many years later, the name Sophia made a comeback, and I watched smugly, knowing I came upon this graceful name before The Crowd did. And I’m sure, I thought, no one else knows the power of this name’s etymology. My little secret.
And now my daughter, my Sophia is in her freshman year of college. She’s kicking academic ass and taking academic names. She’s really digging her anthropology of language class, because she’s learning about the components of language and how it reflects and expresses culture. She’s becoming a linguistic egghead, fascinated with the shape and sound and correlation of words.
From what I can see, she’s a little bit in love with the whole thing. Learning, exploring, expanding her understanding of the world. It’s okay if she doesn’t have the physical strength to overcome the brittle nature of her bones. She’s got something even better. She’s gaining a deep wisdom that comes from knowledge. Sophos. My Sophia.
Meg Currell is the proud mom to three children, only one of whom has OI.
Go to http://www.sophia.org for some really cool tutorials on lots of intellectual, academic, deep-thought subjects. That’s the website that started me thinking about her name, but it’s also a neat site to visit.
A few of years ago, my daughter spent the night at her best friend’s house. It was a typical high school sleepover–very little sleep, lots of junk food and goofing around. The purpose of the sleepover was a Glee marathon, which my daughter proclaimed she would tolerate, but not enjoy. Glee was only a year old at the time, but she already knew it wasn’t for her. All those shiny people, and she’d heard it was all about being gay, and it just didn’t interest her.
When I brought my daughter home on Sunday, she sat me down in front of the computer and showed me an episode of Glee where the choir needs a bus to go to a competition, but the school isn’t willing to pay for the wheelchair accessible bus to accommodate Artie, the club member who uses a wheelchair due to a car accident. An argument erupts among the Glee club members, some of whom think it should be Artie’s responsibility to get himself to the competition, not the responsibility of the club. It’s not fair, they say, that the whole club needs to be inconvenienced for the needs of just one member.
The director sees how unfair they’re being, and informs them that they will spend the week learning what it’s like to get around in a wheelchair. He brings in a flock of chairs, and the club has to manage their lives (for a few hours or a day, I forget) as a disabled person would. The club eventually realizes how incredibly ignorant they’ve been, and in the end–as happens in Glee world–they sing a song dedicated to Artie (Rollin’ on the River) and dance a wheelchair-integrated dance.
I cried. And the show has had a spot in my heart ever since.
This is the first TV show I’ve seen where the person in the wheelchair isn’t either a saint or a villain, where he’s just a person, like everyone else. What Glee does so incredibly well is to show that people who differ from the “norm,” from the expectations held by middle America are, in truth, *normal.* They’re human, just like everyone else. The fact that they happen to be bi-racial or homosexual or use a wheelchair doesn’t mean it’s okay to whittle them down to being the one thing by which they’re most easily identified.
What’s even better to me is that Artie has been a central character in the show for the entire run of the series. He isn’t just a character they brought in to teach a lesson, and then the show goes back to “normal” the next week. Just like real-life kids with disabilities, he goes to class, he’s part of the Glee club, he falls in love and has relationships, emerges as a leader of the group and sometimes makes stupid decisions. He deals with his disability sometimes, the frustration of being in a wheelchair when all of his peers are able bodied. One wonderful dream sequence depicted him able-bodied and showed off his dancing skills (demonstrating that the actor is not, in fact, disabled, a controversial issue I will not address here). That episode spoke to the longing my daughter has expressed to just not have to deal with being in the chair–just for a little while. To be seen as just a regular kid, not The Girl in the Wheelchair.
This week, Glee once again addressed in a very direct, compassionate way what it’s like to be disabled. The club, once again raising money for the bus to go to competition, sells beefcake calendars, and Artie objects to participating. He believes that any picture of him will really be a picture of the wheelchair, and he articulates his own body issues that make him reluctant to shed his shirt for the public. In a show of solidarity–again–the club decides to have some fully clothed guys among the half-naked shots in the calendar.
It’s the unity of the group around not just Artie, but the club member who had to repeat senior year because she flunked, or the male club member who identifies as a girl and feels more comfortable wearing girls’ clothes, or the club member whose eating disorder caused her health problems that makes this show special. Yes, unrealistic, but special, a place where kids who are “different” (and how I hate that word) can see that the world isn’t entirely a hateful, monochromatic place where conformity is the only path to acceptance.
Their differences, while initially off-putting, are what makes the group stronger. The differences are what makes them interesting and textured, set apart from the uninterrupted, dull, suburban landscape. Their differences–our differences–are what make us human. As I’ve always told my children, everybody’s got SOMETHING they’re dealing with–with some of us, it’s just easier to see. Don’t be fooled into thinking everybody but you is perfect, because there isn’t one among us who is.
So as cheesy as it may seem, I am a Glee fan. Wholeheartedly. There are cast members whose voices and story lines I love, and those whose voices and story lines I hate. But that, too, is part of life. You’re not gonna love everyone. This week, their ensemble performance made me cry again, and scream and cheer for their ardent celebration of who they are as individuals, and how they come together as a group. Here’s a video of the performance. Please watch, ok?
I am forever grateful to Ryan Murphy for his message of full, complete acceptance of people, no matter who they are or what they look like. If more people could understand, as he truly does, that it’s the humanity of the person that really matters, our world would be a much easier place to live in.
Plus, we would all be able to sing and dance like the kids on Glee. And that would make me happy.
Meg Currell will spend her day playing Glee music on a loop. And dancing.
Everyone Knows Her
My daughter’s home for spring break. We’re getting out of the house as much as possible, but with the brisk wind and cold temps, this may be a “break” but not really much of a “spring” for her. At least she doesn’t have 8 a.m. classes or professors glaring at her disapprovingly.
One of our favorite activities is to go to Target. Sometimes we have a purpose, sometimes we don’t. It’s therapeutic for me to wander through the clearance racks. We don’t usually buy anything, we just look. I can’t explain it, but my daughter enjoys this too, so this is what we do. This and Biggbys coffee.
While we were checking out of Target last night, the very friendly checker asked how we were doing, and asked Sophia how school was going, and what she was majoring in, and how she liked her university (and she knew where Sophia was attending), and when classes resumed. Sophia answered honestly, pleasantly, with a smile on her face. As we stopped to put on our coats–well out of the checker’s earshot–Sophia said “who IS that woman? and how does she know so much about me?” I don’t even know the woman’s name.
I’d kind of forgotten about this, the “celebrity” effect we deal with just by dint of Sophia using a wheelchair. EVERYONE knows my daughter, and knows a surprising amount of detail about her. She is, apparently, the subject of discussion outside of my purview, and information gets passed around about her by people who have no connection to her or me. Some of the information is wildly inaccurate–like when people I barely knew talked to me out of the blue about how my daughter got fractured at school. “I heard she fell out of her chair!” “She ran into a wall!” “Some older kids knocked her over!” Nope, not even once.
Maybe it’s just me, but medical information about my physically disabled child is — oh, I don’t know — PRIVATE. I wouldn’t dream of approaching someone with whom I don’t have a close relationship and starting that conversation. But people have done it with me — and with her — for years. They simply assume they know her because they’ve seen her around a lot, like crazed fans think they know Britney Spears.
LEAVE BRITNEY ALONE! LEAVE HER ALONE!
As silly as it sounds, I’ve always identified with celebrities who complain about being famous. If we deal with just a small fraction of what famous people deal with, I wouldn’t change places with them for a second. I *like* being a private person. I value my solitude more than anyone I know, almost to the point of being antisocial.
Having my daughter forced me to deal with strangers in a way I never imagined, from learning how to graciously handle well-intentioned advice from older women about how to make my baby’s bones stronger (“Milk, dear!”) , to the stares of children who can’t comprehend why another child would be in a wheelchair, to the ignorant school representatives who say outright that they know how to deal with my child because they’ve “handled other kids in wheelchairs before.”
Because, you know, they’re all alike.
But I still have trouble getting my head around the idea that simply because she exists, my daughter has less of a right to privacy, to her life belonging to her and no one else, than everyone else does. My husband — who came to being her parent when Sophia was 5 — has asserted that it is our job to be representatives for the disabled community to the rest of the world. We are, he believes, emissaries, examples by which the “typical” world understands disabled people. This is not an uncommon philosophy, and is, in fact, a laudable idea, but I am incapable of being that tolerant that consistently.
Sometimes, I just want to get a gallon of milk without having to also explain my daughter’s medical condition in the middle of the store. I have felt the freedom of anonymity in my daughter’s absence, when no one recognizes me anymore, even people who have known me since our kids were in second grade together. And I like it. I like being just whoever I want to be, not an emissary or a representative of something larger.
I know I’ve complained about this before. And yes, we’ve had wonderful experiences as a result of being so visible. But there are just days when I get tired–and she does too–of constantly being on parade. At least I get a break from it when Sophia goes back to school; she has to deal with this every single day.
If I were her, I’d have trouble being the kind, pleasant soul she is publicly. It’s not enough she has to put up with fractures and constant pain, dealing with a 250lb wheelchair in a world that’s not fully accessible, knowing there’s another fracture or surgery just around the corner. She also has to leave the house every day prepared to encounter people without the good manners to mind their own business. She deals with condescension, ignorance, and inflated expectations for her behavior. She constantly has to be better than all of humanity; patient, good, considerate, loving — every second of the day.
Yeah, if I were her, I’d want to break some kneecaps.
She’s at just the right level, too.
I just finished talking to another OI mom who’s been getting flack from other OI moms she knows about the course of treatment she’s chosen for her child.
Talking to her, I was reminded of the emblem of many OI families, the snowflake, how it symbolizes the exquisite differences in each of our children. Every person with OI is said to have their own genetic mosaic, so that the DNA of my type III OI daughter will not match the DNA of another person with type III OI, even though their types are the same. When my daughter was very young, I eagerly sought–and failed to find–other people with OI who were exactly like my daughter, so I would know what to expect. Of course I didn’t find any. Because every person with OI has a different genetic makeup (even when it comes to the OI gene), it makes sense that their physical experience will differ.
Knowing this, knowing how the OI community celebrates the differences of each of our snowflakes, it doesn’t make sense to me that anyone would expect the medical treatment for all OI kids to be the same.
Yes, there are some revolutionary treatments available now that weren’t available 20 years ago. Pamidronate has changed the lives of many kids with OI, mine included. Intramedullary rodding surgery has evolved from the brutal shish-ka-bob experience–revolutionary in its time–to a much less invasive procedure, resulting in shorter surgeries and shorter recoveries. Improved splinting material is more widely available, and a larger number of physicians are much better informed about handling OI than they were even a decade ago. Assistive equipment and physical therapy have improved day-to-day function and reduced overall pain.
Things have changed for the better in the world of OI treatment, but that doesn’t mean that all of the available treatments are appropriate for all kids with OI. Some kids with OI get rodding surgery on all of their long bones, but for my daughter, rods were only appropriate for the femurs and humeri. Because of the way she’s built, rodding surgery in her forearms would have reduced her function. And this was a decision that I made in consultation with her physician.
It’s been suggested that I haven’t been aggressive enough with my daughter’s medical treatment. But again, my decisions have all been based on what is best for my child, not what has been best for other children. And in making my decisions for my child, I take into account everything that affects her, which often includes intangibles that people outside of my situation know nothing about.
While it’s important to seek advice from people you trust, it’s easy to fall into self doubt when other OI parents natter in your ear about your decisions. Being connected to the community presents a very fine line; do I simply do what everyone else is doing because they say it’s the best thing to do? Or do I assess my child’s situation and make the decision based on all of the information I have available?
I’ve always done the latter, though it’s run me afoul of some people in the OI community. It’s all right by me, because, like Groucho Marx, I have always been suspicious of any group that would have me as a member.
But it bothers me that a group that makes its identity all about the beauty of individuality could criticize a mom who’s trying to do what’s best for her individual child. In my view, the community should provide advice, not criticism. We avoid doctors who treat all OI kids the same way, so as a community, we should refrain from assuming all OI kids’ parents should advocate for their kids the same way. They have different needs. Some people in the OI parents community say–rightly–that only the parents know what’s best for their kids. It’s only logical to assimilate that advice into our own dealings with fellow OI parents.
Either the OI community recognizes that each person with OI is different–and celebrates that difference–or it is a group that must move in lock-step on every issue relating to the disorder.
But philosophically, you can’t do both.
Meg Currell can’t seem to keep her opinions to herself. What a pity.
My daughter is two weeks away from finishing a very successful freshman year at university. This last few weeks is breaking her heart, however, because she knows this is the end of her time there. She’s made the decision to move with her dad and me to Portland at the end of the summer.
This decision was agonizing for her. She knew at the beginning of the school year that I would be following my husband to Portland after our youngest child finishes high school this spring. I think she put off thinking about it most of the fall semester, but around Christmas, she announced to me that she had made her decision: she was coming to Portland.
And then in February, she announced she was considering staying at Iowa.
In March, she said she didn’t know what she thought anymore. I set her the task of investigating the possibility of a personal aide at Iowa, something she had started looking into but had never finished. And aide would make her and me more comfortable about her living 1800 miles away from me, almost a day-long trip by plane and car to reach her in an emergency. She had so much to do at school that looking for an aide never occurred to her. Plus (knock on wood) she didn’t have a single fracture this year, so it just didn’t cross her mind. I’ve been three hours away, so if there had been a fracture, I could reach her quickly enough. We got used to the three-hour comfort zone and didn’t think anything of it.
So I had her look into it. I told her to go talk to her disability services counselor (a real sweetheart) and get the wheels in motion for getting her an aide next fall. I stifled my terror at returning to the mindset of being a day’s trip and two mountain ranges away from my daughter when she needed me. I reminded myself how well this year had gone, how unlikely it was that anything could happen in the nearly perfectly accessible environment of her school. Her main obstacles had been heavy snowstorms, when the grounds staff couldn’t get the sidewalks shoveled fast enough, and the ramps were either not clear for her to drive through, or were invisible, making crossing the road very dangerous for her. Twice she’d had to miss class because the ramps were obscured so much, she didn’t feel safe crossing. A personal aide would eliminate that problem, as they could suss out the ramp from the curb as they crossed together. An aide would also be able, ideally, to help her if she had a fracture.
A couple of days after I told her to look into the aide possibility, she came back to me and announced she was, in fact, coming with us to Portland. For real. This was her final answer. No backsies, she said. Her logic is that Portland is where she wants to end up eventually, and the transition from the Midwest to Iowa is going to be brutal no matter when she does it, and this is her best opportunity to get it done. She insists that her decision does not hinge on my proximity.
I know she’s wanted to move to Portland ever since she visited there three years ago. She’s said so repeatedly. When my husband took the job back in August, she was miffed that we were moving to “her” city. I think it took her until Christmastime to forgive us for being interlopers on her dream. But after she discovered Iowa, Portland became the place she expected to move for her Master’s, the place she’d start her adulthood. It’s an incredibly accessible city, with its focus on public transportation for all people, including (truly) people in wheelchairs. The climate, while rainy, doesn’t include a lot of snow, which my Chicago-raised girl *hates*. I get that–it’s hard to navigate a power wheelchair on icy and snowy sidewalks. And it increases the danger level, too, but not in a fun way. In a “geez, I could actually die” way.
On some level, I expected eventually to be separated from my daughter by the mountains. I figured I’d be in Colorado, a mere 8 hours from her in Portland. But the possibility of being separated from her now, when she’s still learning how to do all this stuff alone, was something I wasn’t yet ready for. I wasn’t even ready to think about getting ready for that separation. But I was good: I held my tongue when she told me she wanted to stay in Iowa. So the decision is truly hers.
But it’s a decision that makes me very sad for her. Iowa is a place where, for the first time in her life, she’s found a group with whom she belongs. She joined the Campus Activities Board (CAB) during her first week, and immediately fell in with them. They set up campus activities (shocker, I know) including movies, cultural events like Taste of Asia (how ironic, I thought), and performances by comedians like Bo Burnham and Aziz Ansari. It would be easy to say the reason she has enjoyed being in CAB is because she’s getting to meet cool people like Bo Burnham and have her name written in Arabic and have a marathon Harry Potter movie weekend. But it’s way beyond all that. These kids are her peers in a very real way, in a way no one in high school ever was.
Living in the dorm is a huge part of it. She can interact with them completely separate from any intervention from mom; nobody has to drive her anywhere, or help her get out of the house. She’s absolutely independent at Iowa, and now she’s starting to find out who she is, to individuate from her mom in a big way. It’s as it should be for college freshmen, wheelchair users or not.
But the atmosphere at Iowa is just different. There’s a wholesomeness about the school I haven’t seen at other schools. While I’m not an expert by any means, I am familiar with a number of campuses. In addition to my alma mater, our oldest child visited four before he made his decision; she visited five before settling on Iowa. The attitude at Iowa is so pleasant and welcoming and unaffected, and that shines through the student population as well. I haven’t heard a single complaint of people treating her like a child (aside from an obviously mentally ill person) or dismissing her because she’s in a wheelchair. Her inclusion in activities has been seamless, with barely a mention of how it would be achieved. It just happened, it just *was.*
This is the world I don’t want her to leave. I am sure there are other places like that out there, and I’d be willing to bet she’ll find something in Oregon that’s very similar. There’s a decency in the people of Oregon, too, a basic friendliness my husband has been struck by in his time there. But after watching her struggle for twelve years to find any kind of group where she belonged, it’s been a joy to see her having such success with this great group of kids, these geeks who dress in costume for Harry Potter, who lie on the floor with her and mug for the camera, who physically pick her up to pose for pictures (oh, my heart), with whom she shares inside jokes and nicknames and memories nobody else knows about.
And now she has to leave them.
As glad as I am that she’ll be close to me, and that she’ll be in Oregon, where she has longed to be for three years, my heart is breaking for her as she says goodbye to these truly good people who have made her part of their family. Finally, she belongs, and now it’s getting ripped away. And I hate that.
Meg Currell can’t verify the actual timeline of the decision process. All dates are approximate.
I’ve often referred to the Groucho Marx saying “I don’t care to belong to any club that will have me as a member.” I’ve used that sentiment as a shield, because I’ve always had trouble fitting in. It’s easier to say you reject the group than believe they rejected you. I’ve written elsewhere that I like being alone, and it’s true. I’m a quiet person by nature, attracted to trees and books and music. The only kind of joining at which I’ve ever been successful has involved sports, which I did every spring and summer. I guess that gave me my fill of people for the year.
I’ve always been afraid that I’d pass this characteristic on to my children. My oldest was never afflicted, and may have succumbed to too much group cohesion as a college student. Marching bands have a LOT of fun. But I’ve worried that my daughter, whose disability and use of a wheelchair naturally set her apart from her peers, would forever be ostracized further because she would not the requisite skills for dealing with people, because I could not teach her. Whether this tendency is happenstance or lack of skill, I feared my behavior would become her behavior, and she’d be on the outside as much as I am. While I prefer being solitary, she’s very different from me, and I feared my example would sentence her to a life not meant for her.
Her primary and high school years were, in fact, difficult socially, mostly because no one could figure out that they could transport her almost as easily as I could. She had great friends in the school building, but when it came time to do something outside of school, either I took her or she didn’t go. And once kids were old enough to have drivers licenses, having Mom drive you is just not acceptable. So for a while, she was socially marginalized. Summers were very sad affairs, because she didn’t see her friends every day, and few people included her in plans to go out. By mid-July, she was a wilted flower of a girl, lacking the regular watering of social contact.
This is why I forced Girl Scouts on her past the time when she was interested, and why I volunteered as a GSA leader into her high school years. This is also why I insisted she join at least one non-academic group in high school. Since the avenue of team sports is not open to her, I knew she needed a place to learn the skills I could not teach her. When she quit orchestra, I made her choose another group with which she would have to learn how to work. I wanted her to have outside-of-school activities, a group to which she could belong. She chose choir, which also didn’t work very well. Senior year, she joined peer leadership, which was an amazing experience, and provided a preview of her fearless personality.
But once she went to university, a fully accessible campus released her natural spirit, and she immediately joined a campus group dedicated to planning events on campus, called Campus Activities Board. It was a perfect fit; regular, outside-the-classroom contact with kids her age, a group that had to work together toward a common goal, and plenty of social outings to force her out of her dorm room. CAB became her family, her siblings, her confidantes. She made friends and mistakes and contacts, met famous people and those not-so-famous, did things she never even considered doing before, and had a blast.
I believe she even maintained good grades during this super-fun time in her life.
So it turns out my daughter is much less “me” and much more my mother, who was reportedly a “party girl” in her youth, and suffered similarly under the strain of reduced social contact. Working with CAB was the beginning of Sophia’s independence, her exploration of her personality parameters without the Mom filter. It was the first time she truly belonged somewhere, and it was a marvel to watch. She was so happy and active and alive, especially when she had a big event coming up. I’d barely hear from her for weeks, and when she’d call, it would be a rushed check-in phone call, lots of interruptions from her friends, and laughter in the background over some shared hilarity. I was content to let her go about her business and leave me “alone”, which is my happy state anyway.
And now that she has decided to join her Dad and me as we move across the country, she has to leave the only group to which she’s ever belonged. I know she’s happy to be moving to a part of the country she adores, and to be closer to one of her dearest friends, and to be leaving the snow-riddled Midwest. Snow is no fun when you’re in a wheelchair.
But this group gave her the experience I was incapable of giving her, and if I had some way to make it happen, I’d make her stay at her university and with these kids for the rest of her college years. She should get the experience I never had, a group with whom she can create her own life on her terms. It’s an opportunity that, when she was very small, I didn’t expect her to have at all. Now she’s got it, and I’m taking it away.
I have faith that she’ll find another place that she belongs. It’s who she is. I’m so glad to know that the outsider behavior is not genetic, that I haven’t passed on to her the shyness that has plagued me my whole life. That would be tragic for her. But I hate that she has to leave these people who have embraced her so fervently, and I hate to see her heart break.