Raising a chronically ill child means always being on guard — and learning to let go of rules
When I was pregnant with my daughter Claire, I dreamed of what life with her would be like. I imagined watching her run with friends at the playground. Every night we would talk about her day at school over dinner. As she grew, I would teach her the life lessons and skills she would eventually need to leave home and lead a life of her own. Even though I had not yet met her, I was heartbroken thinking that my ultimate role as her mother was to raise her to be healthy and independent enough to leave me one day.
But despite a perfectly uneventful pregnancy, soon after Claire was born, I had to let go of what I thought her life would look like. Because she has a rare chromosomal anomaly, Claire will likely never run, talk or live on her own. She is non-verbal. We haven’t yet found an alternative communication system that works beyond Claire letting us know her basic preferences and needs. Most of the time she uses a wheelchair to get around, although she can walk a little with help. She has a long list of medical conditions that require daily therapy and medications.
Yet, she is happy. Now 16, she thrives at her school, which focuses on teaching children like Claire life skills. She loves movies, ice cream, amusement parks and being in the water. Her three younger siblings dote on her and fight over who gets to push her wheelchair when we are out. They are fierce advocates for her. Even when they were very young, they noticed that people with disabilities are often overlooked. They always make sure she is not left out if they get a balloon or cookie. Chocolate chip is her favorite.
Because Claire is medically complex, her lifespan is unknown. I simultaneously save furiously knowing I may need to provide for her for the rest of her life, and focus on giving her joy at every opportunity. At any moment a seizure, heart murmur, infection she can’t fight off or an asthma attack could take her.
That means I don’t worry about giving her cake for breakfast. She will always need help preparing her meals and doesn’t need to learn good eating habits. She may not even live long enough for nutrition to become an issue. She does, however, need to enjoy whatever time she has here. When the future is so uncertain, even well-established rules become flexible.
Screen time rules are also meaningless for Claire. She loves watching television shows and movies about teenage girls. I wonder if she, too, knows that in an alternate universe she might be trying out for a school musical or figuring out how to handle an unrequited crush.
Sometimes I am almost unrecognizable to myself. I was the parent who avoided giving my children sugar for as long as possible. I was adamant that my children watch no TV before turning 2, and am acutely aware of the warnings about too much screen time. But there is so little Claire can do on her own and these indulgences make her so happy. These are small ways to fill her uncertain and hard life with joy, even if they represent another way I have let go of the life I once envisioned for Claire.
Sometimes, in my dreams, Claire talks to me. I would have guessed there would be endless tears about everything she has lost, but in these dreams we laugh endlessly. We have so much fun together. She tells me that she prefers her ice cream plain, without whipped cream like one of her younger brothers. She tells me about all the clothes I picked out for her that she hates wearing. She calls me Mom and rolls her eyes like any other teenager. I always stay in bed a little longer after I have these dreams, staying with the memory of getting to know my daughter, what she is thinking and feeling, what she likes and doesn’t, just a little longer.
Part of these dreams is relief in thinking that I no longer need to be consumed with fighting for Claire. We can’t take anything for granted. For years, I lived in fear that she would lose access to Medicaid. If that happens, she will lose the support that allows her to live at home, with her family where she belongs. She would lose access to life-saving medical care. Although her access to health insurance is safe for now, I can’t help but think that another threat lies just around the corner.
I still struggle too often with having to fight for her access to the same places her siblings go easily. Even those who claim they support inclusivity are quick to exclude people with disabilities. At her younger siblings’ public school, I was gutted to discover that even after an extensive renovation the school’s playgrounds didn’t include sufficient accessible equipment. When my other children wanted to raise money to provide some so that all children, including their sister, could play there, the school administration shut down the plan quickly. They were heartbroken. It was another indication that their sister doesn’t matter. We were once trapped in the same school when no one could find the key for the wheelchair lift for almost an hour — even though the lift never should have been locked in the first place. Publicly, the school promotes diversity and inclusivity but their actions toward my family tell a different story.
We regularly encounter non-disabled people parked in accessible spaces, claiming they are only there for “just a minute.” Their inconvenience at having to walk a few feet more regularly trumps my daughter’s need to have a spot close to our destination where we can safely unload her wheelchair, away from busy traffic, and use a cut-out to safely get her onto a sidewalk. There is almost no enforcement. Some become irate if I ask them if they forgot to display their placard, not wanting to give up the “good” spot they just took from disabled person who desperately needs one. Sometimes there are children in these cars. All I can see is an adult reinforcing the message that people with disabilities aren’t important, passing the message on to the next generation who come to see their disabled peers as a nuisance. There is a dark joke in the disability community that wheelchair users are just in it for the parking, since so many can’t see why anyone could really need an accessible parking spot. Then there are the people who sit in seats reserved for those with disabilities and their companions at movie theaters, forcing us to leave without seeing a show. It’s hard to leave a movie theater with disappointed children and a bucketful of warm popcorn.
There are also buildings that lack ramps or elevators. I used to be able to carry Claire into these places, but as she gets heavier and I get older, this is becoming impossible. I feel guilty because, even though I know blame lies with those who refuse repeatedly to make places accessible, the reality now is that my own frailty means even more of the world is lost to her.
Compounding all of this is deep financial stress. Claire may have a future in which she needs support for every aspect of her life, for a very long time, even after her father and I are long gone. Although that outcome is more desirable than the alternative, saving for decades of support for someone with needs as complex as Claire makes saving for college for my other three children look like child’s play. It feels like every dollar put toward something else is a dollar taken away from a secure, and comfortable, life for Claire. There simply aren’t systems in place to allow people with disabilities to live with dignity without significant independent support.
In a way, my role as Claire’s mother is still what I originally thought it would be. I still want to keep her healthy and as independent as possible. Instead of teaching her good eating habits and how to do laundry, instead I make sure she has the best care possible and access to the best programs to help her continue to develop. Her story isn’t finished.
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