Courtesy of Alana Romain

Filling Out My Daughter's Disability Form Made Me Confront My Own Fears

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Earlier this year, my husband and I learned that our 3-year-old daughter has cerebral palsy. In truth, the official diagnosis caught us off-guard. Although we knew Madeleine had some issues stemming from being born extremely premature, and from having complications from a brain hemorrhage she suffered shortly after birth, we'd assumed that the fact that we'd gone so long without anyone formally saying "this is a thing" meant that we were probably in the clear. The revelation that we'd been wrong hit me pretty hard, so Madeleine's doctor wisely waited a few weeks before having us back to discuss treatment options, as well as things we hadn't even considered, like school accommodation and disability grants she'd now be eligible for. I knew in my heart these developments were positive, that they were in Madeleine's own best interest, and thought that I'd made peace with my initial worries. But it turned out that filling out my daughter's disability form upset me more than I thought it would, and that caught me off-guard all over again.

After Madeleine was first diagnosed, the fact that we'd been wrong — that we hadn't even realized before then that our daughter had cerebral palsy — felt shameful. I felt like a bad mom for not seeing it, for not being able to tell something so significant about my own child that our doctor was able to see, plain as day, within the first few minutes of our appointment. But I was also ashamed for another reason, too. I'd spent pretty much Madeleine's entire life being afraid that she'd end up disabled, spent the first year of her life trying to prepare myself for her to not talk or walk or be "normal" the way I hoped she would be, because I knew the severity of what had happened to her. But disability, I understand now, is a spectrum. Madeleine is not severely disabled like we once worried she would be, but she is disabled, mildly, and that comes with its own set of challenges that don't deserve to just be ignored because I was afraid of the idea of having a disabled child.

Cerebral palsy, check. Chronic disability, check. Irreversible problems, check. That was Madeleine's disability, spelled out for me in black and white. And all I could think was, I don't want this to be our life.
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Courtesy of Alana Romain

What I know now, and what I probably should have known an awfully long time ago, is that Madeleine is still the same child she was before her diagnosis, the same wonderful child she has always been. And I also see now that giving her a formal diagnosis was probably only of the most helpful things her doctor could do. Before, it was hard to explain to other people what Maddie had been through, and to get them to consider that she wasn't completely typical even though she looked and acted like she was. It was hard to get others to consider that she would need accommodation for certain things, and that we weren't just being "paranoid" or "overly coddling." Getting a diagnosis meant that instead of having to say, "well, she was born really premature, and then she had some bleeding in her brain, and then she got hydrocephalus, and then she had some surgery, and she looks fine but sometimes she falls down a lot and, no, she's not potty trained yet, and actually, you'll need to keep a close eye on her, and yes, she'll probably always be a little small, please make sure she keeps her brace on her leg even indoors," we could say "she has cerebral palsy on her right side," and then everyone would say, oh, OK, gotcha.

When it came time to fill out a portion of one of the forms we'd been given by her doctor, my stomach turned.
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Once I realized that — once I realized that our daughter was still the same girl, and that our experience as her parents was still the same, just with an extra label attached — I started to see how long I'd spent overreacting. I wanted her to be able to have her limitations respected and I wanted her to have access to support that will make her life easier. And yet, when it came time to fill out a portion of one of the forms we'd been given by her doctor, my stomach turned. The doctor had already filled out a list of the things Maddie could not do, all the ways in which her disability manifests itself, and had then written her diagnosis in big, block letters: RIGHT SIDE HEMIPLEGIC CEREBRAL PALSY. I read the instructions in the caregiver section, that applicants must have a chronic disability resulting in irreversible problems lasting longer than six months to be eligible, and I could feel the tears welling up behind my eyes, threatening to fall in big, heavy sobs. Cerebral palsy, check. Chronic disability, check. Irreversible problems, check. That was Madeleine's disability, spelled out for me in black and white. And all I could think was, I don't want this to be our life.

Courtesy of Alana Romain

I am well aware of the pettiness surrounding my feelings. Madeleine could have easily been disabled in a much more severe way, or she could have died. It's almost surprising, actually, that neither of those things ended up happening. I also know full well that there are many, many other parents who would look at a kid like Maddie, who would look at us at her parents and think, you got so lucky. My child's disability means she might always walk a little funny, or be clumsy, or get tired more easily because she has to exert significantly more energy than other kids do to do the same task. It means she'll be heading to school in diapers, but one day she will likely grow out of them. Other children we know, some of whom had even less of a traumatic beginning than Maddie, might not ever do that, and will need bigger, more substantial accommodations than Maddie, like wheelchairs, or special classes at school, or help with everyday tasks like dressing or eating for the rest of their lives. But not only do I not have a reason to complain, I also don't have a right to assume that those children and their parents actually do.

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I don’t ever want my daughter (or anyone else, for that matter) to think there’s anything wrong with being disabled, and yet, there is still part of my brain that is trying to convince me that there is.

Shortly after Madeleine's diagnosis, a well-meaning relative said to me, "You shouldn't keep talking about it when she's around. You don't want to label her." I knew what she meant by it — she didn't want me to inadvertently teach Madeleine she should be embarrassed or ashamed, or to see herself as "different" — but I felt pretty strongly in that moment that she was very wrong. I didn't want Madeleine to be embarrassed, but I also didn't want to teach her that having a disability was something less-than, something to be discussed in hushed tones when the person in question was out of earshot.

Courtesy of Alana Romain
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My dream for Maddie is that she will own her CP as one of many different parts of herself, as one of the things that makes her the incredible person she is and will always be. And yet, I can already see that it is me, not her, who will stand in the way of that actually happening. As much as I know that disabilities aren’t terrible, that they aren't worth of sadness or pity or shame, it feels as though the stigma attached to disability is constantly shouting “THIS IS WRONG AND BAD” on a constant loop in my brain. I don’t ever want my daughter (or anyone else, for that matter) to think there’s anything wrong with being disabled, and yet, there is still part of my brain that is trying to convince me that there is.

There's no doubt that I still have a lot of work to do. Despite my best efforts, I still have a lot of feelings about what has happened to Madeleine that affect me in ways I don't want them to, and those feelings are just some of the baggage I carry as an imperfect mother trying to do the best she can for her kids. I might not be able to move past all of that stuff anytime soon — perhaps I never will — but I can try and keep those thoughts from affecting my daughter, from seeping into her brain, too. Her disability, like all the things she will experience in her life, has nothing much to do with me, after all. And, in time, hopefully I can learn to follow her lead, letting her define for herself what her diagnosis means for her, without having to explain herself or make any apologies.

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