A year ago, I was living in a daze. I was spending most nights curled up against my 11 year old daughter’s back as she lay on her side in her bed, willing her pain to dissipate, even hoping to absorb it myself. Most days were spent in constant vigilance of her symptoms: what had started out as a random pain in her hip 6 months earlier had progressed to pain and swelling in almost every single joint in her body. I’ll admit, I questioned (and cursed) God. I wondered what had gone wrong in the universe, whether I’d done something bad enough in some life, past or present, that somehow made us both suffer.
And as I lay awake all those nights, I worried I’d eaten something I shouldn’t have when I was pregnant, or didn’t eat something I should have. I worried that we lived too near a power line, that we sometimes put plastic in the microwave, that we ate too much processed food, that we wore synthetic fibers, that I used disposable diapers after she was 3 months old, that we breathed polluted air because we lived in a city too close to the interstate, that she had had too many doses of antibiotics- or maybe not enough. That she was vaccinated. Then, I worried that she wasn’t vaccinated on the standard timetable.
A month earlier, on December 10th, 2011, a pediatric rheumatologist had confirmed what I already knew: my daughter had juvenile arthritis. My strong, healthy, athletic, smart (sometimes smart-ass) daughter, who had always occupied every cell of her body with such grace. And not the ‘good’ kind, that resolves by young adulthood, but rheumatoid arthritis, that ‘has a high likelihood of chronicity” (you can read that as “she’s probably stuck with for life”). In fact, her doctor now calls is CORA- Childhood Onset Rheumatoid Arthritis, to make this distinction. Of course nothing the doctors said indicated that there was anything that I could have done to have prevented it- it’s an autoimmune disease, and such diseases are triggered by a combination of genetic factors and environmental/experiential factors, as far as I can tell. But like Heather wrote this week, motherhood and guilt are almost inextricably combined.
A year later, with her symptoms well under control (she is in therapeutic remission), I can see a little more clearly how worry and guilt can literally eat you up. Once I started sleeping, I realized how much I hadn’t been sleeping, or rather, how poorly I’d been sleeping. Once I escaped the constant anxiety and vigilance, I can see how anxious and vigilant I was, and breathe easier. I still don’t know what path the disease will take for her- living in the present has been something forced on me rather than something I sought and accepted in some Zen-like fashion. Having some perspective is interesting. This summer Juliet got to ride Space Mountain at Disney World. From what I remember (circa 1981), you can’t see exactly what twists, turns and drops await you, unlike most other roller coasters that are physically intimidating because you see the actual journey that awaits you enacted over and over again as you anticipate your ride. You get on your space ship in the dark and you take off. During the ride, you know on some gut level that it will be over at some point, but the jerks and drops are so intense you can’t really anticipate the end on a conscious level.
I’ve never liked roller coasters, and I still don’t. But living through the last 18 months has helped me see what strength I do have to live through the dips, rolls and drops that life throws at me (because really, we all know there are more, right?). Watching my daughter’s resilience has been amazing and inspiring. I’m daily grateful that as parents we’ve been able to provide her with the best medical care available ever in the history of humankind. I’m also reminded daily that humans have the power to relieve suffering on a scale we haven’t even imagined yet.