Raising a chronically ill child means always being on guard and learning to let go of the rules

Writer Jamie Davis Smith shares her experience raising her chronically ill daughter Claire.  (Photo: Angie Klaus Photography)

Writer Jamie Davis Smith shares her experience raising her chronically ill daughter Claire. (Photo: Angie Klaus Photography)

When I was pregnant with my daughter Claire, I dreamed of what life with her would be like. I imagined seeing her running with her friends on the playground. Every night at dinner we talked about her about her day at her school. As she got older, I taught her the life lessons and skills she would need to leave home and lead a life of her own. Even though I hadn’t met her yet, I was heartbroken that my final role of her as her mother was to raise her so that she was 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 be. Because she has a rare chromosomal abnormality, Claire will likely never run, talk or live on her own. She is non-verbal. We have yet to find an alternative communication system that works beyond Claire letting us know her preferences and basic needs. She most of the time she uses a wheelchair to get around, although she can walk some with assistance. You have a long list of medical conditions that require daily medication and therapy.

Yet he is happy. Now that she’s 16, she thrives in her own school, which she focuses on teaching kids like Claire life skills. She loves movies, ice cream, amusement parks and being in the water. Her three younger brothers adore her and fight over who gets to push the wheelchair when we’re outside of her. They are proud supporters of her. Even when they were very young, they noticed that people with disabilities are often overlooked. They always make sure she doesn’t get left out if they get a balloon or cookie. Chocolate chips are her favorite.

Because Claire is medically complex, her lifespan is unknown. At the same time I 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, a heart murmur, an infection she can’t fight off or an asthma attack could take her away.

That means I don’t bother giving her cake for breakfast. She will always need help preparing her meals and does not need to learn good eating habits. He may not even live long enough for nutrition to become an issue. However, she needs to enjoy all the time she has here. When the future is so uncertain, even established rules become flexible.

Even the rules of screen time are meaningless to Claire. She loves watching TV shows and movies about teenage girls. I wonder if she even knows that in an alternate universe she could try out for a school musical or figure out how to deal with an unrequited crush.

Sometimes I’m almost unrecognizable to myself. I was the parent who avoided giving my kids sugar for as long as possible. I was adamant that my kids don’t watch TV until they turn 2, and I’m keenly aware of the warnings about too much screen time. But there is so little Claire can do for herself 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 let go of the life I once envisioned for Claire.

Sometimes in my dreams, Claire talks to me. I would have imagined there would be endless tears for all that 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 than hers, without cream like one of her younger brothers. About her She tells me about all the clothes I chose for her that she he hates exhausting. She calls me mom and rolls her eyes like any other teenager. I always stay in bed a little longer after having these dreams, left with memories of meeting my daughter, what she thinks and feels, likes and dislikes, just a little longer.

Part of those dreams is the relief that I no longer need to wear myself out fighting for Claire. We cannot take anything for granted. For years, I lived in fear that she would lose access to Medicaid. If that happens, she will lose her support that allows her to live at home, with her family to which she belongs. You would lose access to life-saving medical care. While her access to health insurance is secure for now, I can’t help but think that another threat is just around the corner.

I still struggle too often having to fight for his access to the same places his siblings go easily. Even those who claim to support inclusiveness are quick to exclude people with disabilities. At his younger siblings’ public school, I was gutted to discover that even after an extensive renovation the school’s playgrounds did not include enough accessible equipment. When my other children wanted to raise money to provide some so that all the children, including their sister, could play there, the school administration quickly shut down the plan. 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 to the wheelchair lift for almost an hour even though the lift was never supposed to be locked. Publicly, the school promotes diversity and inclusiveness, 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 discomfort at having to walk a few extra yards on a regular basis outweighs my daughter’s need for a place near our destination where we can safely unload her wheelchair, away from heavy traffic, and use a cutout to bring her safely up a sidewalk. There is almost no application. Some get upset if I ask them if they forgot to show their sign, not wanting to give up the “good” seat they just took from a disabled person in desperate need of it. Sometimes there are children in these cars. All I can see is an adult reinforcing the message that people with disabilities are unimportant, passing the message on to the next generation who come to see their disabled peers as a nuisance. There’s a dark joke in the disability community that wheelchair users are only there for parking, since so many can’t understand why anyone would truly need accessible parking. Then there are the people who sit in the seats reserved for the disabled and their carers in cinemas, forcing us to leave without seeing a show. It’s hard to leave a movie theater with disappointed kids and a bucket full of hot popcorn.

There are also buildings without ramps or lifts. I was able to carry Claire to these places, but as she gets heavier and I get older, this is becoming impossible. I feel guilty because while I know the blame falls on those who repeatedly refuse to make places accessible, the reality now is that my own fragility means even more of the world is lost to her.

Compounding all of this is deep financial stress. Claire may have a future where she will need support with every aspect of her life, long after her father and I are long gone. Even if that outcome is more desirable than the alternative, saving for decades of support for someone with complex needs like Claire makes saving for college for my three other children seem like child’s play. It seems like every dollar spent on something else is a dollar taken away from a safe and comfortable life for Claire. There are simply no systems in place to enable people with disabilities to live in dignity without meaningful independent support.

In a way, my role as Claire’s mother is still what I initially 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 her laundry, I instead make sure she gets the best possible care and access to the best programs to help her continue to develop. Her story isn’t over.

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