What does it mean when they say my kid’s diagnosis is terminal?

Ask Aimee is a new advice column on navigating life as a parent with a disabled child.

What does it mean when they say my kid’s diagnosis is terminal?

Dear Aimee Abled-Mom of Disabled Kid,

Real talk. My kid’s diagnosis is a terminal one. How can I prepare for this? How can anyone?

Xoxo I’m So Scared

Dear Scared,

First, I want to take a moment to say that this is a big deal. Huge. So here is a big, big hug. They say no one should have to bury their child, that it is the worst, most terrible, awful thing a person can experience. That’s what they say, anyway. I don’t know this from experience. At least, not yet.

My daughter’s diagnosis is terminal, too. Your child’s situation could very well be different from mine as her life is not ending imminently. At least, it doesn’t look that way. The problem is that we don’t know. My girl has a rare neurological disorder called pontocerebellar hypoplasia. It means that her brain stem and her cerebellum were not formed properly. Most kids who have this do not survive infancy or early childhood. Most kids who have this do not walk or talk, do not eat independently, do not learn. They have seizures, experience pain.

While my daughter looks like her PCH peers on MRI, her genetic mutation has not been found. She cannot walk without very supportive leg braces and a walker, often uses a wheelchair because she is easily fatigued, struggles academically, and uses a g-tube for her primary method of nutrition intake. She has never had a seizure. Her speech is fluent and mostly clear, she can read and type, she goes to school, dresses up, and wants to be a model. She has some health issues but compared to those of her PCH peers, they are fairly minor. Apart from her extensive mobility equipment, she looks like the active, healthy third grader that she is.

My daughter’s neurologists are flummoxed by her. “We have no medical reason to be anything but optimistic,” they say. “But given her diagnosis, it’s important to be realistic too. Prepared.”

I have no idea how to do that. Optimistic and realistic and prepared all at the same time. I lose sleep thinking about what would be worse: my daughter dying first, or me. I can’t imagine having to bury her, but if she outlives me, who will care for her like I do? A disabled friend of mine reminds me that the concept of a “full life” or “a life well lived” is an ableist concept.

Read more: My disabled daughter isn’t your inspiration porn

“Maybe ten or twenty or forty years is good enough for her body and her brain.” That may very well be. Doesn’t make it easier for me, or for the rest of us in her immediate family. How will we ever live without her? And is it hubris to think that it may be difficult for her to live without us? A friend of mine whose twelve-year-old daughter has Rett syndrome often says she has just one wish: that she outlives her daughter by one day. That seems like a good solution to me, but since I can’t control any of that, what do I do?

I don’t really do anything.

Well okay. That’s not quite true. Optimistic, realistic, and prepared infuse all our decisions. That is my barometer, the method by which I strive for balance in her life and ours. Her health and happiness are what matter most. Our goal is not to keep her alive at all costs, nor is it to abandon all medical and therapeutic intervention. We look for the scaffolding that will help her live a contented and interdependent life while she is here.

So, surgery that would keep her out of school, on bedrest, medicated, and in pain for six months? No thank you. A g-tube, which would help her maintain a healthy body weight and lower anxiety and stress in our house about forcing her to eat by mouth when it was clearly a distressing experience for her to eat by mouth. An easy yes.

Pushing academics at all costs? Not when the risk was making her hate school. The first time she said she hated school and didn’t want to go, I called a meeting of her team and said we needed to pull back on the academics. She’s a stubborn kid, and if she decided she didn’t want to go to school anymore, she would learn nothing at all. I’d rather leave the door open for her to grow and change and for us to find new ways to adapt the curriculum, which we’ve done.

And as for the rest, is a day at a time too flippant an answer? It works for all the addicts out there in recovery, so I borrow it from the experts. Nothing I can do about tomorrow. I love my kid and she’s here now, so I try to say yes to things. Yes, let’s watch a movie together. Yes, I’ll read you another book. Yes, you can put my lipstick on. Yes, let’s bake muffins and you can pour all the ingredients into the bowl. Yes, I want another hug. That way, when the answer has to be no, like no, you can’t come with me to the supermarket because COVID or no, you can’t have a loft bed because your balance is poor, it doesn’t feel like a barrage of no no no no. When there is plenty of yes, all the little times I say no: like no, you can’t stay up any later or have more screen time tonight or be done with your feed yet or wear eyeshadow to school or pull the cat around by the tail or photobomb my Zoom work meetings or skip your pills or not go to physical therapy won’t feel like they add up to being restricted all the time by her disability or worse, by her annoying parents.

And more importantly, I won’t look back later and be regretful that I didn’t give her enough of myself.

So, let’s end this here for now. We both have kiddos to say yes to!

xoxo Aimee