I was in a pediatric hospital room yesterday, just as a visitor. The room was empty, unused. The impact of the sensory input took me by surprise. The hard surfaces of the parents’ chair, the cot under the window, the bathroom in the corner. A room where life is suspended while a child receives care. It’s a coarse cocoon, this medical space, where repairs are made and trained nurturers provide every possible need. Where the child is in pain and the parent holds on to whatever part can connect them, diving into the abyss as far as it’s possible for a passenger to go, never letting go of that child’s hand or shirttail or strand of hair.
The sensory impact was brutal, and I almost burst into tears in front of the complete strangers by my side. My days of bedside anchoring are long over, but yesterday I discovered an unexamined trove of memories of the days I spent with my daughter at the hospital. I am not here for pity, but for lists. A retrospective captain’s log.
She had nine surgeries all in all, my daughter did. I don’t know how many times she was in-patient for treatments, our so-called “spa” days where she’d get hooked to an IV for three days of bone density medication. From age ten to sixteen, maybe. Four times a year, with gaps during the heavy-surgery years, because they didn’t give “bone juice” when she had surgery or a fracture. Whatever that adds up to for treatments. We were at the hospital a lot.
We were close and I made her crazy. I was alone with her so much, but in the hospital, never quite alone. Nurses around the corner, and nurse’s aides. Child life therapists and PTs, residents. We’d have long stretches of time alone in that room. She played Mario 64 and MarioKart, drinking in the experience of playing video games because I didn’t allow them at home. I still love the sound of the music from those games, because it meant she was doing something that made her happy.
She made friends in the hospital. Other kids who were there for treatment, or for surgery. If she was unhooked from the IV, they’d go wander the halls of the hospital together, safe in the hallways filled with medical personnel, play therapists, everybody who knew her and talked to her like she was just a kid. In that hospital, she was just a kid.
It seems strange to say, but time in the hospital wasn’t the worst time of being her parent. Sometimes it was the best because she could just be her, and that made her so happy. Surgery days were the worst for me, the most terrifying, abject horror that still wakes me at night shouting at the fear of losing her.
But in the hospital I never woke in fear. In the hospital, the burden from the non-disabled world of living with a disability that comes from lack of accessibility, from lack of respect and compassion, from ignorance and curiosity–that burden is gone. Being in the hospital meant she could encounter other people without fear, without their conformist mindset putting her in a box of miscellaneous “other”, things to be looked at with suspicion. In the hospital, she had a name and they understood her disorder without that constant explanation we’d have to do every time we left the house, the explanation that distances “normal” people from my beautiful incredible daughter. And even if they didn’t understand her disorder, they had enough experience and compassion to be able to see past the disability to *her*, not the #inspiration of her, just HER.
She was normal at the hospital. And happy. All any parent wants for their kids is for them to have and hold happiness. My son had happiness in school, playing music, being in Boy Scouts, camping and creating the smelliest laundry I’ve ever encountered. I could see when he was happy, and what made him happy was easy.
There was little I could do to create that space of ease for my daughter. Being in the hospital made that space. She’d eat small pudding cups or cereal boxes fetched from the mini-kitchen in the ward. The stuffed animal and blanket waiting on her bed at the start of every visit. Seeing her favorite nurse Livia and getting the big cleansing hug that was like a sigh, the weight lifting as she eased into the arms of one so secure, so knowing and sound. These made her happy.
And I could sit in the hard chair and watch and let go of everything except that one finger, tethering her to me in case she floated off, joyous as a helium balloon, in her hospital happiness.