A couple weeks ago, I talked a bit about the NF Symposium I attended a few weekends ago and how I was struck by the conflicting agendas of the program participants. That was the cerebral side of things. In this post, I’ll be talking about the emotional aspects.
We know that we’re still at the beginning of K’s medical journey, a journey that will be most unpredictable through her childhood and adolescence, and that we still have a lot to learn – particularly since we don’t really know how K will truly be affected by her condition. So it’s really fantastic to have a forum such as the NF symposium to learn more about the condition, meet other patients and parents and get an understanding for the type of clinical trials that are currently under way.
Here’s the catch. In my head, I think that I think (yes, I know that’s an awkward construction. Bear with me.) of K’s NF the same way that I think of my own auto-immune diseases: It’s there. It has the potential to be serious. But right now at least, it’s not affecting her (or my!) life very much. I’ll borrow tomorrow’s troubles tomorrow. And for the most part, I think that’s a good attitude to have.
…Except it’s not really my attitude.
But when I really think about it, I realize that my attitude toward K is a lot more like my attitude was during my pregnancy with her. As many of you know, before we had K, we had a difficult pregnancy that didn’t end well. However, the result of that “negative outcome” was the diagnosis of Antiphospholipid Antibody Syndrome as the cause. When you’re pregnant – especially for the first time – you think that once you pass the first trimester, you’re home free. So I think that it can be extra shocking to discover that there’s a problem later on.
So with my pregnancy with K, we were diligent. We kept all our appointments. We did a monthly ultrasound. We were vigilant in my daily Lovenox shots to my belly. And while my pregnancy went relatively smoothly (APS and placenta previa aside), there was an undercurrent of anxiousness. Of waiting. Waiting for bad news. Waiting for the next milestone. Waiting for viability. Waiting for a “coast clear.”
Now don’t get me wrong – it wasn’t ALL like that. There were plenty of good, fun, enjoyable parts. But I always had in the back of my mind the possibility that the other shoe would drop.
And I realize now that that’s a bit like what I do with K, though less intensely. My kid is joyful. She is excited and full of life. She’s silly and wonderful. And so most days, I don’t think too much about what might happen. But there’s an extra note of caution that is injected every day. Does she have more spots? Does she have lumps under skin? Are her odd shuddering episodes mini-seizures? Do I need to worry about learning delays or disabilities? When’s her next appointment? What specialist does she need to see next? What do we need to expect?
And just like the pregnancy, where I knew that if we could make it to 32 weeks, things would look a lot better, I know that if we can get K to 16 without major problems, her life will be relatively calm (at least as it relates to NF).
But every day, I strive for that sense of calm I described earlier. And I hope that if I can’t find it, I can at least fake it. Because K deserves at least that.