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Numbers: Parenting Children with Disabilities, By the Numbers

Colorful numbered blocks

I am a words person. Given a choice, I’ll always show a preference for language and vocabulary over math. But numbers are inescapable, especially for the parent of a disabled child. Numbers can summarize, categorize, predict, or terrify, depending on the situation. They are an unescapable part of our lives.

Sometimes I use numbers as a quick snapshot of our situation, both to show how many things I’m forced to manage, as well as how much my daughter has to put up with on a daily basis. It’s an extremely efficient and effective form of communication. Rather than launching into a long summary of her medical history, multiple diagnoses, and various therapies, I simply list out our lives by the numbers:

Diagnoses: 16

Specialists: 18

Specialty departments: 10

Daily medications/supplements: 11

Prescribed therapies: 8

Most people are shocked by these numbers. Unless someone has had their own serious health issues to manage, they never expect any of this to be so high. I’m not always proud of myself for throwing these numbers around since it’s an overly simplistic way of summarizing our complex lives, but sometimes I just need people to understand how difficult it is to manage JJ’s care. I have so many things to juggle I sometimes feel like an acrobat in Cirque du Soleil. I’ve organized two three-ring binders for all of her paperwork, and still notebooks and sheafs of paper spill across my desk. I need my own personal assistant like nobody’s business.

When you’re caught up in the world of doctors and diagnoses, it feels like you can’t escape quantification. How much does she weigh? How many hours of sleep does she get? How many ounces does she drink per day? How many hours of therapy does she do per week? There’s no way around these questions. How else could the doctors and nurses proceed? Numbers tell stories, predict problems, and slot people into categories. It’s all very useful…up to a point.

I have come to realize that there’s a darker side to numbers and quantifying our lives that we often brush past. I’ve lost count of all the times my chest has tightened with grief when numbers have failed my daughter. How many words can she use? How many letters can she recognize? How many objects can she count? How many steps can she take on her own? Sometimes zero is the most devastating word in the English language.

In addition to the numbers that encapsulate our lives, there are the ones that haunt our nightmares. When my daughter first received her diagnosis of Rett Syndrome, I made the mistake of turning to Google for information. As I was searching online, a frequently-asked question popped up. What is the life expectancy of a person with Rett Syndrome? I knew I shouldn’t click on the link, but the compulsion was too strong. I had to know. So I clicked. For me, twenty-four is now the most devastating number.

I learned later that, thanks to medical advancements and better care, life expectancy is much higher than this. But it was too late. The number was already seared into my brain. I will never be able to erase the moment when I read it. There are other statistics that weigh on me as well. The percent chance JJ will develop seizures (80%). The average wait time for state services (9 years). The likelihood she will fall victim to scoliosis (94%).

We know we aren’t supposed to use statistics and averages to forecast our futures, and yet we do it anyway. I’m guilty of this more than most because, at heart, I’m an academic. Statistics are my crystal ball, my way of trying to predict the unpredictable. It’s an impossible, losing battle, but it’s normal to want to know what comes next. As a parent, I can’t help forecasting my child’s life, even as I desperately beg the universe not to make her another statistic. Every day I look at JJ and urge her to be stronger than the averages stacked against her. I drive her to appointments, pay for therapies, and coordinate preschool services so that she has the best possible chance. If we can’t beat the odds, we’ll at least go down fighting them.

There are also the numbers in our life that represent hope, even if they cannot truly encapsulate it. When it comes to Rett Syndrome, there are some exciting scientific advancements on the horizon. The number of girls enrolled in a clinical trial, the results of that trial, the amount of dollars donated to research—these numbers hold me in their thrall. I watch them take shape and pray with every fiber in my body. Each one is a paving stone on the road that will lead toward or away from life-changing treatments and a cure for my daughter.

But even in the world of science and research, numbers are still not enough. They can’t truly illustrate what an effective treatment or cure would mean for people living with Rett Syndrome. During a recent meeting between members of the Rett community and the FDA, parents and caregivers spoke about their experiences. One woman told a story that took my breath away. She talked about her daughter—a girl who could barely grasp a crayon and make dots with it on a piece of paper. After testing an experimental drug in a clinical trial, the girl could remove the lid from a paint bottle, pour the paint out, dip a brush in it, and paint strokes onto a canvas. For anyone with Rett, this change is nothing short of a miracle. But the girl’s mother was rightly concerned about what happens when we transform this monumental improvement into a number on a graph for FDA regulators to study. According to the clinical trial’s measurement system, the girl’s hand use had only improved by one point. But if that point represents the difference between shaky dots on paper and paint brushed across a canvas, then it’s one of the most important points I’ve ever come across.

Though numbers might rule our lives and forecast our futures, there are still many things that cannot and should not be captured by them. I never count the minutes I spend with JJ sprawled on my lap, head nestled into my chest as I stare out the window, enjoying a quiet moment with my girl. If I tried to track of the number of times her little face breaks into a smile each day, I would miss the beauty of that smile. If I added up the hours of sleep I’ve lost crawling out of a warm bed to check on her, or the number of medications I’ve tried and discarded in my search to help her, I would lose my sanity. I can’t quantify my life as a parent of a disabled child. No scale, graph, or point system could ever portray how much I love my girl, the lengths I will go to for her, or the amount of fear and worry I feel for her.

So, I’ll take words any day. Because they allow me to tell my girl how much she means to me, explain to the world how important she is, and write about my time with her in all of its beautiful, terrifying complexity. Numbers might play a big role in our life, but they will never capture how it feels to live it.

What things in your life are quantified? How does that affect you? What parts of your life cannot be measured?

Let me know in the comments below.


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