What happened when I was busy making other plans.

Surviving the Recovery

We are hard-wired for the happy ending. Maybe this is just human nature, American culture, or maybe it’s Disney’s fault. But I can’t offer you a happy ending right now; I can tell you we’re in a happier in-between space.

That’s the snapshot of our lives right now. There are more smiles and more laughter. The abject horror of our day-to-day reality has given way to stiller waters. But there is also trepidation of what’s next; the uncertainty is a challenge unto itself. The biggest unknown of all, of course, is whether E will continue on her upward climb; whether this will end in full recovery, continue to require ongoing management, or will regress to instability. The in-between space is hard to navigate and even harder to explain in three sentences or less, which is what the average person hopes to hear when they ask how she’s doing. But it’s trickier than elevator pitch timing would allow.

One of my oldest friends has had a much more difficult health crisis with her son, who just completed treatment for leukemia. I remember when we last spoke several months ago she told me that his treatments would end in September. Trying to be supportive, I offered, “I bet you’ll be so relieved.” No, mostly she feared that she would fall apart when his treatments were completed. Though his prognosis is very promising–a very high percentage achieve full recovery–come September they would enter the five-year wait-and-see phase before they could say for sure that he was cured.

Sometimes when you emerge from a crisis, it’s scary to look back or forward. As for us, we are doing lots better. E still needs her weekly shot and a pill every night that helps the shot work better. She is off the heavy-duty blood product, gamma globulins (IVIG) and the nasty steroids. (That, in and of itself, is cause for celebration.) Our once-weekly visits to the hospital are now monthly; the weeks in-between, an at-home nurse administers her medication. Her numbers have been high enough that there are no more restrictions on her activities, so she has been able to get back to karate, dance, physical education and outdoor recess at school. In many ways, she seems like every other kid.  

But not exactly. I still need to check her for signs of bleeding every couple of days. She needs to take it easy when she gets a cold or a virus so her levels don’t take a nosedive. I still worry every day that she will wake up and tell me she feels something in her mouth. This is our reality.

We are both make-the-best-of-it people. But there is an emotional hangover to this kind of trauma. Physically she’s so much better. Emotionally, she’s improved quite a bit, too. The bouts of steroid-induced irrationality have given way to a much calmer child. But all those months of supreme bravery have taken their toll: She still grapples with mercurial ups and downs, is prone to tantrums and has trouble regulating her emotions.  It’s as if her psyche has reached its quota. So we are rebuilding, but just like her illness, her emotional health will take time to fully heal.

I am hopeful that I will be able to report a happy ending . . . we’re just not quite there yet. When I look back to where we were, several times having witnessed near-death bleeding, it’s a nightmare that won’t go away. At those moments, the voice inside my head would say, “She will be OK. This is bottom. It’s uphill from here.” It took a few bottoms before we finally started clawing our way up. But I believed, in my heart, that we would get through it. And we’ll get through this, too.

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