My Medically Fragile Child Is Never Going To "Get Better"

Sitting across the table from my mom and stepfather in a densely packed Parisian bistro, I cannot help but wonder about handicapped accessibility in a tiny restaurant like this. I glance at the family sitting next to us, their table so close I could reach over and help myself to their wine. Each time the waiter passes behind me to get to their table, I have to scoot my chair in a bit further. The two kids, who look to be about 12 and 8, are fighting over something in hushed voices. I imagine trying to eat here with my own daughter, Esmé, who is a medically fragile child, her tiny arms banging on the tabletop, getting into everything within in reach, knocking glasses onto the ground.

Thinking of her reminds of the pretty shirts I’d purchased as gifts for her right before I joined my parents for dinner. “Check this out,” I say, holding up the first one, a blue-and-white striped shirt with a bow, for my parents to see. Out of the corner of my eye I can see the woman at the table next to us looking on at the tiny shirts and then glancing wistfully at her two children sitting across from her. I catch her eye and smile.

She asks, “For your child?”

I reply, “Yes. They’re for my daughter, Esmé.”

She smiles at me and asks, “Oh, how old is she?”

“Five-and-half,” I say. A confused look dances across the woman’s face, and it takes me a minute to realize: Right, the shirts. So, I quickly continue, my cheeks a bit warm, “She’s really small.”

“Must be really small. I have one who is small,” she nods toward her son, “But, not that small…”

I smile, “Yes. She is extraordinarily tiny. My daughter is medically fragile.”

Our conversation switched gears shortly after that, but the woman returned to the topic of my daughter a little bit later, asking a few questions about her health. I could tell she was thoughtful and curious, listening as I explained a few things about my daughter’s four genetic mutations and her disabilities.

I mean this without even a pinch of embellishment: The fact that my daughter is alive is a miracle.

After dinner, I found myself turning those words around in my head: Medically-fragile. I use it as a helpful shorthand response to help me navigate the kinds of parenting small talk that can get confusing and uncomfortable. Saying that my daughter Esmé is medically fragile quickly helps me side-step the difficult rambling explanations about why a month into the school year my almost-6 year old still hasn’t had her first day of kindergarten, or why she wears clothing that would fit most average 2 year olds.

However, it occurs to me that what exactly I mean when I say “medically fragile” may not be clear to others. I realize it may, in fact, close conversations with confusion rather than answers. Now, I don’t necessarily expect to have every stranger I meet understand the intricacies of what it means to have a medically- fragile child, but as I thought about it, I realized I think that even people we know and love struggle to fully comprehend what Esmé’s medically fragility truly means. I regularly field well-intentioned questions about whether Esmé will get better. I regularly explain that no, my daughter not growing out of clothing isn’t a perk; it's actually one of the more serious medical problems we are currently dealing with. And I regularly have to justify that planning for Esmé’s life-long care isn’t me being dramatic: It's me being hopeful that she'll live a long life, while also recognizing that there's no one but my parents who knows how to care for her if something were to happen to her father and me. Each time I have one of these conversations, I find myself feeling increasingly frustrated and isolated by the confusion others have about the gravity of Esmé’s medical condition.

You see, I very much prefer to focus my attention on telling people about how wonderful my daughter is, on celebrating the milestones she reaches, on enjoying the things that bring her joy. I prefer to talk about how tough my daughter is to have come through so many challenges. At the same time, the context of those milestones, joys, and challenges is her medical fragility, and that is such an important part of the wonder and privilege of knowing my daughter. So, perhaps, I need to back up and explain what, exactly, Esmé’s fragility is… and what it means. Because, and I mean this without even a pinch of embellishment: The fact that my daughter is alive is a miracle.

My entire life revolves around Esmé’s health. We drive four hours away around once a month to see some of the best pediatric specialists in the world. We are in constant discussions about potential surgeries, procedures, tests, and medications with her ridiculously long list of specialists. Esmé has spent more time as a patient in a hospital in five-and-half years than I've spent in my entire 34. With Esmé, we're not dealing with an isolated problem, one we have the hope of containing, treating, and moving on from.

A medically-fragile child requires daily long-term specialized medical healthcare due to a condition that can rapidly decline resulting in serious injury or death. From an official point of view, in the State of New York, my daughter is permanently disabled. Furthermore, the state sees her medical status — due to her seizure disorder, tube-feeding, and inability to participate in self-care — as such that she could qualify for institutional care. The state, therefore, provides in-home skilled nursing support (when we can find nurses, which is another story) in order to help Esmé remain living in our home.

So, there is that legal reality of her fragility — a fact that we meet twice a year to re-determine and for which her re-qualification has never been in question. But at the same time, a term like “fragile” seems to be such a matter of perspective, doesn’t it? After all, Esmé isn’t as fragile as she used to be — when I would stay up all night on seizure watch, oxygen canister and emergency meds waiting on the foot of the bed, at least once a week. And she isn’t as fragile as many of the children I've come to know in the years since I've met parents with sick children. I feel blessed for her health daily, reminded always of what she's already come through.

However, it must be said: My entire life revolves around Esmé’s health. We drive four hours away around once a month to see some of the best pediatric specialists in the world. We'e in constant discussions about potential surgeries, procedures, tests, and medications with her ridiculously long list of specialists. Esmé has spent more time as a patient in a hospital in five-and-half years than I've spent in my entire 34. With Esmé, we're not dealing with an isolated problem, one we have the hope of containing, treating, and moving on from. This is life, Esmé’s and my own, for the foreseeable future. I understand that it's a difficult concept for other people to grasp — because unless you have to trudge through it every single day as your regular life, it seems impossible to bear. But, honestly? Even if it is your life, sometimes it still seems impossible to bear, except you don’t have any choice but to keep doing it.

In Esmé’s first few years of life, it wouldn't have shocked anyone who was paying attention if she had not survived. She came very close to dying when she was 3 months old. Her first years were filled with hospital stays and procedures, and constantly trying to get a handle on her seizures, vomiting, breathing, and repeat infections. I got used to 911 calls, ER visits, and swerving over to the shoulder of the road because she'd turned blue in the backseat. I woke up many mornings prepared, on some level, to find my daughter not breathing in her crib. Some mornings I'd even pause at her door and hold my breath, hoping to hear her stir, to alleviate my fears, before walking in.

The last two years have brought us to a place where many of these things are in check — meaning that she is increasingly “stable.” Thanks to finally finding a seizure medication that works for her, having two surgeries, a good deal of very close monitoring, and a handful of procedures, we've struck an equilibrium with Esmé’s health, for the most part. She's stable enough that with a carefully planned care schedule at home, including my dad and stepmom, one nurse, two caregivers, and Esmé's father, I can sneak away for a four-day vacation with my parents in Paris, a city I’ve always dreamed of visiting. But this stability is not equivalent to her conditions being solved or cured. It is not a promise of a continued equilibrium.

We live with the knowledge that seizure medications often stop working — which can mean devastating backslides. Many of the things we have in place to keep Esmé safe are a kind of delicate scaffolding. If one piece slips, there is a reasonable chance that the whole structure can come crumbling down — one bad virus could threaten her life. (But it's worth pointing out that we watch her fight off nasty viruses with less complaint then many adults with little head colds.) But even the things we use to help keep her symptoms in check have a number of side effects that contribute to a lessened quality of life. Her anti-convulsant is an entirely necessary part of her life, but it can increase some of her other symptoms, causing more difficulty learning, problems swallowing, and impaired motor skills, especially at the heightened doses she's on. It can also cause all sorts of other side effects, which often manifest and become things she cannot tell us about, like chronic headaches, dizziness, confusion, hallucinations, and difficulty urinating. These are tradeoffs. And we do not take them lightly.

I felt so clearly the weight of this reality — of my reality — of caring for a child who is medically fragile. I felt how it has forever changed my family. I felt how she has deeply bonded the people who grasp that everything that goes into keeping Esmé safe is difficult and terrifying, but also an honor.

For a child like Esmé, her stability is certainly not ever to be confused with a cure.

Sometimes, for as much work as it all is, when I sit down and think about it, I forget that the kinds of things that go into my daughter’s daily life aren’t normal for most people. I forget, because they are normal for me, and I’ve never had any other children, so the ways I mother Esmé are the only ways I know how to mother. But sometimes I lift my head up and realize that other people don’t count their children’s calories every day, or tube-feed them, or keep a suction machine and an ambu bag around the house in case their child stops breathing, or regularly check their children’s pulse and oxygen levels. I forget that other parents bring their kids to dance classes, not therapy sessions. I forget that other parents don’t speak to their children’s doctors like they went to med school together. Then I notice it when I hear other parents worrying about the kinds of things I used to imagine worrying about when I was pregnant: picky eating, classroom friendships, learning toys, and the deep fear of missing some sign of a serious illness — an illness that would place their children in Esmé’s cohort.

I appreciate that such worries are the real stuff of much of parenting. I really do. I just don’t really have much of a window into understanding it. Perhaps someday, if I am fortunate enough to have another child, I will. But for now, I feel like I live exclusively in an alternate parenting reality. I accept that I will grow attached to children who will die. I am rationally terrified about my daughter’s future. I feel increasingly isolated from the kinds of lives I see many of my friends and family living — where children can easily attend school, have a typical babysitter, or survive without entire medical care teams.

The alternate reality of parenting that I live in is filled with things I cannot take for granted, like continuous childcare or the ability to naively expect a healthy baby. My stepdad, Phil, has been a sounding board for me almost my entire life, and is never short on suggestions, but when we talk about the future, he tells me how proud he is of the care I give Esmé and reminds me how much he loves us.

Sitting at a cafe in Paris with Phil, I felt so clearly the weight of this reality — of my reality — of caring for a child who is medically fragile. I felt how it has forever changed my family. I felt how she has deeply bonded the people who grasp that everything that goes into keeping Esmé safe is difficult and terrifying, but also an honor. It's a privilege to be in the position to care for this beautiful girl who is so fragile, to watch what she has done to all of us, what she’s taught us about family, about love, about compassion. She is so fragile in so many ways. But also, she is the opposite of fragile. When you consider everything she has been through, everything she’s taught us, my girl isn’t fragile at all.

She’s the strongest person I know.