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My Child Might Not Live to Adulthood

This Is What It's Like to Have a Child You Don't Know Will Make It to Adulthood

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Like most parents, my spouse and I think about our daughters' futures all the time. But unlike most parents, we also have to think about whether one of our children, Freyja, who was born with pontocerebellar hypoplasia type 2 — a very rare and severe neurological disorderwill even have a future, and if she does, what it might look like. She's 7, and her diagnosis is so severe that most people born with it don't survive childhood. In some ways, she's more physically and neurologically capable than similarly diagnosed children, and she's simultaneously significantly delayed in virtually every way compared to her neurotypical peers, so we have no clear indication of her prognosis. In short, we plan for everything and prepare for anything.

Because we have no concrete reason not to, we operate under the assumption that she will live a long and healthy life. So does she. She has no idea that she has already outlived many of her PCH peers. Medically and developmentally, she continues to gain strength where others atrophy and regress. She learns slowly and makes measured progress, so we all have good reason to be optimistic. She often begins sentences with "When I'm older" and tells people she wants to be a teacher when she grows up. Sometimes I find myself correcting her in my head. If you grow up, you mean. But then tears spring to my eyes at the horrific thought and I force myself to think positively, shooing away my pessimism with monthly contributions to her college fund.

She wants so badly to be independent, to be like everyone else — but she isn't like everyone else. She's different, and because of her disability, she may always need [help].

She may never be a teacher, but her doctors think she very well could grow into an adult with a livelihood, employed or otherwise engaged in some capacity or other. It's hard for us to imagine what independence in adulthood will look like for her, because it's hard for us to grapple with it in childhood. She wants so badly to be independent, to be like everyone else — but she isn't like everyone else. She's different, and because of her disability, she may always need accommodations that will make what you and I think of as fully independent living look very different for her. The problem with this is that's not Freyja.

In many ways, she's like any other 7-year-old. She likes to play dress-up, go swimming, and be read to. She loves cats, mac and cheese, and going to the movies. But then she breaks down when she can't rollerblade the way her sister can, crying, "Why can't I do it like she can? It hurts my legs and it's not fair!"

Accepting her difference is harder than one might think. She's deceptively interactive, and most of the time, her charm is captivating and engaging. Well-intentioned teachers, parents, therapists, and friends tell her all the time that she really is no different from anyone else and that she'll be able to do anything if she just puts her mind to it. This is sweet and flattering, but it also infuriates me, because it's untrue. I love my daughter and am wowed by her accomplishments every single day, but she has some very real limitations. Expressing this to the people in Freyja's world who love her can be a challenge, so finding a way to express it to Freyja herself is heartbreakingly difficult.

I believe my daughter is capable of great things. I believe she'll continue to surprise and amaze her neurologists with all she learns and does. But do I think she has the same career prospects as I did? No. She's not like all the other kids, and if she does grow up to be an adult, she won't be like all the other adults. I am and will continue to be her number one fan and her strongest, loudest advocate, but I refuse to set her up for failure to achieve the impossible.

We can't pretend that we don't see her disability, that she can do it, that she has an equal chance. It's just not true or fair to her. When she wants to do something on her own that all her friends are doing, she's not allowed to because it's often dangerous. At school, she has a full-time 1:1 paraprofessional whose responsibility it is to keep her safe. She can't cross the street by herself. She's been toilet trained since the age of 3, but multiple times a day, she has no choice but to surrender her dignity and allow adults to help her in the bathroom because the balancing act of undressing, sitting, wiping, and dressing is beyond her physical ability. It's humiliating and frustrating for her to have to be so dependent on another person, but it's not something I can change overnight.

Full independence is relative for our daughter at 7, just as it will be at 17 and at 27. Maybe she will always live with us but have her own space. In preparation for this, we bought a Cape house with an en-suite bedroom on the ground floor and had the shower renovated to be wide enough to accommodate a walker. For now she prefers to share the upstairs bedroom with her sister, but I anticipate that someday she will tire of being helped up and down the stairs multiple times a day. Maybe she'll live in a group setting, or in her own apartment with a personal care attendant to help her with activities of daily living that continue to be beyond her grasp. Maybe the living situation that awaits her is one we have not yet considered.

Similarly, employment, should it prove possible for her, may look very different. Her future employers will need to think outside the box when it comes to equal opportunity and ADA compliance. Her future boss will have to re-envision success. A ramp into the building and rails on the walls is a start, but pretending that she's like everyone else except for her walker or wheelchair won't work. I dream that there exists an employer who will take a chance on her, offering her a job that speaks to her strengths and gives her power, all while holding space for her challenges.

Like all parents, our daughters' futures are still uncertain, which is both scary and exciting. But unlike all parents, we're still hoping that one of them actually gets to have one.

Image Source: Aimee Christian
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