My daughter has been living with us since she graduated from university. She lived on her own there, but after graduation, she landed with us and then landed a job and then a full-time job and then we all landed in a pandemic, so she’s been with us.
Although I got used to her living on her own, I love having her here. She and my boys are my favorite people, and getting to see her every day brings me joy.
But today, she brought up the subject of moving out. It’s a long road for her, longer than most young adults face, because of her physical disability and the complexities of building a sustainable life that’s also accessible. When I was first out on my own, I could find the cheapest available place with my college roommate and walk to almost everything I needed. For groceries, my roommate would fire up her SWEET ancient Volkswagen Bug (named Bessie), through whose rusted floorboards we could see the pavement speeding by.
I loved that car.
Circumstances for my daughter require far more planning for everything, not limited to grocery shopping. Because bus stops in Portland often drop people off on grassy sides of the road, because our beautiful city is bordered by steep hills, and because rents in Portland have skyrocketed due to opportunistic greed, her path to independent housing is circuitous. No $250/month including utilities split for her. But she is on her way, and I know she’ll make the right choices, because she has made the right choices on every step so far.
The thought of her leaving reminds me of all the things I have learned from her, from the early days of her infancy to watching her become an adult. She has shown me so much.
When she was very young, doctors didn’t know how long she would live. Life expectancy for people with her condition can be as short as early adolescence. My first and most potent lesson from her was the importance of holding the people you love. Literally holding them in your arms. As soon as I was allowed to hold her, I had her in my arms and on my body as often and as safely as possible. She slept in the bed with me, her milk-sweet breath assuring me that I could rest.
Knowing I could lose her at any moment shifted my focus from my day-to-day concerns to finding every opportunity to make her life better.
I had been working on a second degree when I was pregnant with her, but quickly changed course to finding stable work. Making the world stable for her and her brother took highest priority, particularly as my ex- was the opposite of stable. I found a job that paid most of our bills, allowed me to work during the time that she napped, and left my work concerns at the office. I would come home to my rosy-cheeked girl and collapse into the evening with my children.
Maintaining stability remains one of my core principles. Now that I’ve learned how to take risks enough to have adventures, I can maintain the stable life required for my kids to turn to me if they need me. It helps to have a husband whose goal is also stability at all costs.
Household chores like mopping/scrubbing/sweeping/vacuuming faded into invisibility. Why would I spend my time obsessing over spots on the floors when I might only have a few years with my beautiful daughter?
To this day, I will still stop whatever I am doing when she comes in the room. If she wants to talk or say hello, I have time. I will always have time for her and her brothers, no matter what I’m doing.
My entire social world changed when I had her. People disappeared from my life when they found out I had a child with a disability. I don’t even remember most of their names. The sting of losing people I loved was overwhelmed by the betrayal of their self-centeredness.
The loss of people who were horrified by the presence of a disabled baby made room for people who celebrated the presence of my incredible girl, and I eventually found my life populated with stalwart, compassionate friends. The presence of a small handful of friends who 1) willingly embrace my child as a whole human being, and 2) understand the challenges of parenting a child with a disability is worth far more than a huge array of friends.
Along those lines, I discovered the crucial and belated truth that family is not “everything.” Families are made up of people, and people are flawed. If you’ve ever met a massive asshole in person, remind yourself they belong to somebody’s family.
Now imagine being a non-asshole related to that asshole.
You get the picture.
Through my daughter, I learned the critical importance of accepting people as they are and allowing individuals to determine their own paths. It became clear when she was very young that she would not be like my son, or like most kids, or most people. That she would not meet “perfect attendance” requirements, or be able to participate in sports, or want to wear dresses and pink set her apart from her peers immediately. Her physical complexity affects every choice she makes. She MUST have the freedom to decide what is best for HER in all circumstances; without that freedom, she is not a full human being.
Once I accepted that about her, I realized that every single person — whether I understand what drives their choices or not — is entitled to that freedom. My one job as a person is to withhold my judgement about their choices and allow them to be fully human.
Anyone who doesn’t accept my children as full human beings is not welcome in my family. I made the mistake of allowing some people access to my children and me in the hopes that “family is everything” would override their arrogance, but when it didn’t, I had no compunction letting them leave. Not everyone related to me deserves access to me.
And these two lessons combined can be distilled into one: I choose who is part of my life. Being selective about who has access to my daughter led to being selective to who has access to me. If I can value her, I can value myself.
As a result, I have a very small assortment of people I spend time with. Raising her taught me that I also deserve people in my life who make me feel safe.
I remember one weekend when my kids were very small. It was autumn in southern Illinois, and the leaves were turning but it was still warm. It stays hot there until mid-October at least, so fall was one of my favorite times.
Escaping unpleasantness in our home, I took my kids to a local state park, where a tower allowed for views of the surrounding Shawnee National Forest. We plonked ourselves down on the grass near an empty field, and my son ran around looking for sticks. Leaves fell right on my daughter’s face, and my son came over and sprinkled more leaves on top of her. She squealed with the delight of the open air and playing with her brother, her eyes alight with joy.
That moment of pure joy is as vivid now as it was 26 years ago. I chose to cling to these rare, brilliant moments, knowing one would someday be the last I shared with her. Wrapping her in Christmas lights, recording my kids’ handprints in paint on their furniture, saving the corner of a baby blanket so they’d always remember the comfort of infancy, swinging her around in my arms so she could experience the joy of movement that other kids get by running around, sitting on the grass with her under the falling leaves, or laughing like idiots over some absurdity we just heard are the flames that light my memory. Her laugh still makes me drunk with happiness.
These are the ephemera that deserve my attention, not the dust tumbleweeds in the hallway or smudges on the fridge.
As she plans her departure within the next year, I will support her on every step. Her determination and independence are beyond anything I’ve seen, and I want her success far more than I want my own comfort at her nearness. She deserves a life that she builds, and if I have a hammer or nails to help her along the way, then she can have them.
And that, too, is what I have learned from her; as hard as it is to let your children go, as dangerous as the world looks to a parent launching the young adult who was once a baby they carried in their arms, the moment they are ready to leave, it is time to loosen your grip.
My fears about what might happen to her when I’m not around to protect her are not nearly as important as her ability to create her own life. I will provide whatever support I can, advice if she asks, and I will stay as near as she wants me to be. I only hope it’s near enough that I can hear her laugh once in a while, and watch her exceed expectations, like she has been doing her whole life.
Nothing — not money, or a clean house, or hundreds of friends, or maintaining family traditions — is as important as moments of happiness with people you truly love.