One Of The Most Difficult Things About Parenting A Medically Fragile Child Is Thinking About The Future

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My daughter Esmé is pretty sick at the moment. In typical form for Esmé, who is a medically-fragile child, we aren’t certain what, exactly, is going on. For the last few days my 6-year-old girl has been sleeping on me almost constantly, waking only to retch and moan. Because Esmé is, well, Esmé, our medical team takes her symptoms very seriously. In two consecutive days of lengthy visits to the pediatrician’s office, she's had her typical work up: quick tests for white blood cell count trends, blood and urine cultures, tests for mycoplasma and mono, swabs for flu and strep throat, a chest x-ray.

While we wait for test results showing us something to treat or for her symptoms to improve, we are doing what we always do when she is sick: walking the line between trying to keep her safe, hydrated, and comfortable at home and deciding when we need to risk the exposure and take her to the hospital. This is a rather stressful line to walk but, when you have a medically-fragile child, this is a whole lot of what you do day in and day out. It happens less than it used to — but still, when Esmé gets sick I have to be ready to drop everything.

When Esmé gets sick, everything stretches into the present, and my body becomes a thing that is in service of her — feeling intuitively for her breathing, her temperature, whether I can tube feed her a bit more water or a few more calories without waking her.

At the same time, in the midst of this, it can be pretty hard to stop thinking think about the other thing: The Future. With a capital “F.” The Future begs all kinds of nagging questions beyond: Why is she sick this time and when will she feel better? The Future begs questions like: Who would do this in my absence? And, worst of all: What if she doesn’t have a future?

Courtesy of Hillary Savoie

Part of parenting is inherently future-oriented. When I was pregnant with my daughter I remember thinking vaguely about all of the things I expected to come following her birth: graduations, perhaps a wedding, grandchildren. I didn’t obsess over these things or anything, but they felt like the natural ripples that spread from the moment when that second pink line appeared on my first pregnancy test. Ripples that spread into what lay ahead in my motherhood journey.

Such is the duality of parenting a child with an uncertain future: You must at once plan obsessively for a future in which she might need more support than you ever imagined, all while being aware that such a future might not exist at all.

But then I had a baby for whom these futures weren’t promised. Not just the graduations or the wedding or the grandchildren, but any future at all. I had a baby I wasn’t certain would survive. And when she did survive, pulling through against what seemed like impossible odds, the threat of losing her didn’t relent. Neither did my hope.

It changed, but it did not let up. And as her disabilities became more and more apparent, it became clearer that we also needed to plan for her need for life-long care. Such is the duality of parenting a child with an uncertain future: You must at once plan obsessively for a future in which she might need more support than you ever imagined, all while being aware that such a future might not exist at all.

Now, because of who I am and how I am built, it has always been easier to look toward the former. All of my energy has gone toward securing a future for Esmé — not just any future, but one worthy of her. And with the help of an outstanding care team, including doctors, therapists, teachers, caregivers, and nurses, we’ve made fantastic gains toward that future by improving her health, her communication, and her general well-being.

In addition, there is very detailed planning that is necessary to secure Esmé’s future. For example, there's the matter of her having long-term access to money. Protecting the financial stability of individuals with disabilities is actually quite convoluted. Individuals with disabilities cannot hold even relatively small quantities of money in their own names without jeopardizing their disability benefits like SSI and Medicaid. For example, inheriting as little as $10,000 could disqualify someone from his or her benefits. While living on those benefits alone would not allow Esmé to have access to more than a bare minimum quality of life, leaving her more money, without planning carefully, could jeopardize her long-term stability.

The truth is that Esmé could be left with all of the money in the world, but in the absence of someone to offer her the kind of love and devotion that it takes to provide her with a good life, her future could look very bleak.

So, with the help of my parents, my husband and I have started the legal process that will help support Esmé in the future: Setting up a special needs trust. Any money she inherits in the future will be placed in this trust and administered by a trustee, giving Esmé no legal control over the money — no matter her intellectual capacity. The money will be available for her use for things like her medical expenses and caregiver pay as well as education, vacations, clothing, and vehicles. Planning for her financial stability in adulthood feels complicated enough, but that one was at least the kind of planning problem with a clear solution: Make the trust. Put money in it.

Less clear? What if that thing happens that most parents have thought about: What happens if both Esmé’s father and I both die? While such a thing would be devastating no matter the circumstances, most children can be properly cared for by most loving and thoughtful adults. My child is not one of those children — she also may not be an adult who can take care of herself. The truth is that Esmé could be left with all of the money in the world, but in the absence of someone to offer her the kind of love and devotion that it takes to provide her with a good life, her future could look very bleak.

Esmé is medically fragile and unusual enough that she's not left alone even in the hospital with nurses. She needs to be cared for by someone who is intimately acquainted with her needs. To make clear how seriously I take that, recently I had an accident with boiling water that left me with first- and second-degree burns on my leg and foot. I was burned badly enough to need an ambulance ride and a good wallop of morphine as soon as possible. Here’s the thing: The burn happened when I was alone with Esmé. The first thing I did (after tearing my clothing off) was to call my parents, who live 40 minutes away, telling them to get to my house as fast as possible. I was able to get Esmé contained in her crib and to unlock the front door. Then I sat half naked on the floor of her bathroom, trying not to pass out, waiting until my mom and step-dad were five minutes away. Then I called 911.

Throughout this time my mom kept asking me to please call 911, but my step-father knew I wasn’t going to do that until I was sure Esmé would be safe. My biggest concern in that moment, as I sat on the floor watching the skin peeling back from my ankle, was that the emergency medical team would arrive and have to call Child Protective Services to take care of Esmé. Some random person with Esmé — who is prone to turning blue and seizing, choking on her secretions, and any other number of frightening things — is a recipe for complete disaster. So, I waited for my parents.

I realized I was swimming in the anxiety about planning for Esmé’s future in order to avoid the other more terrifying version of it: A future without Esmé.

You see, the only relatives who know how to use Esmé’s feeding tube or are aware of the details of her medical history are my parents. The longest any of them has taken care of Esmé is my mom, clocking in at just over 24 hours, with the help of a nurse overnight. She did a great job, but she was, admittedly, completely exhausted. My four parents range in age from 59 to 70. And while I don’t like to think about it, reality dictates I must recognize that in my absence, they might not be able to provide care for Esmé for as long as she may need it.

This reality has meant that since we started writing them up, a few months after Esmé’s cardiac arrest almost six years ago, my husband and I have yet to complete our wills. It pains me to admit it, but we cannot figure out someone to put in for Esmé’s guardian options. I still wake up in the middle of the night, seized with parenting guilt, adulting failure, and the kind of disappointment that is hard to put into words. We've discussed every option we can think of, including seriously considering people I’ve never met in real life, but who parent children like Esmé — and do it really, really well.

I know I am not alone in feeling these concerns. Recently I sat around a table with a number of parents with children who all have similar disorders to Esmé. We were discussing the things that we worry about most as parents. This concern for long-term care was the single most repeated refrain: Who will care for my child in the future? Who will care for my child if something happens to me? The discussion took different forms — whether they had aging parents or disengaged family members; whether they had other children or not; whether they'd set up appropriate trusts or not. I found myself nodding along with so much of it, feeling oddly at home and relieved to know others experienced anxiety of this kind of impossible planning.

But as my friend and colleague, Michael Hammer, whom I know through his role as researcher, parent, and advocate in SCN8A Epilepsy community, began to speak, I realized I was swimming in the anxiety about planning for Esmé’s future in order to avoid the other more terrifying version of it: A future without Esmé.

Michael said, calmly and quietly, that he wished he’d known not to worry so much about planning so carefully for his daughter Shay’s future. He said that he wished he’d spent less time thinking about his daughter’s future, and more time enjoying life with her before she died. Because although they had a lovely life together, they only had limited time together: 15 years.

I lie there, still as I can be, feel her breathing in and out in time with my own breathing. I have only one shot at this, at this moment with her. And I think: There were times I didn’t think we’d make it this far.

Michael’s words have stuck with me. I know he didn't mean we should "let go" of the planning that is the right and responsible thing to do. He meant that in the midst of planning for her future, I need to enjoy her. He meant that Esmé’s future is not promised, no matter how well I plan for it. I know no one’s future is promised, but my daughter’s future is even less so than most. It's especially clear to me when she is unwell. These days when I become terrified of all of the illnesses I know can sneak up and take ahold of a child like mine: illnesses that begin as colds and settle into vicious pneumonias in tiny little chests; illnesses that pry loose the tentative grasp we have on seizure control; illnesses that change everything.

As I let her sleep on me for hours and hours out of the day, avoiding the growing list of things I should be doing, I remember how precious, how very precious, this time is. I lie there, still as I can be, feel her breathing in and out in time with my own breathing. I have only one shot at this, at this moment with her. And I think: There were times I didn’t think we’d make it this far.

This moment, it wasn't promised, but here we are.

This moment, it's already her future.

And it's enough.