Humans have an internal compass for justice—at least, most of us do. We learn as young children to abhor injustice. As we mature, we learn the unpleasant truth that things sometimes are deeply unjust and beyond our control.
Gracie rarely minds her disabilities. Although she’s well aware that she doesn’t feel pain, she doesn’t really care that she’s different. She’s indifferent to her differences. Today, though, the harsh injustice of it all broke her heart. (For a little while, anyway. She’s okay now.)
This summer, we spent a lot of time in swimming pools. Jackson learned a rough doggie paddle, and Grace learned to blow bubbles—that is HUGE; we have never been successful in teaching her how to blow her nose or otherwise exhale. (Turns out it’s related to not feeling pain, because several other of the painless kids have learned very late how to blow their noses, too.) The kids’ progress in the pool this summer highlighted for me that they really have very few basic water survival skills. I decided to sign them both up for swimming lessons. Today was to be the first lesson.
We really have not allowed Gracie into pools very much. She basically always has wounds in various stages of healing all over her body, and because of her weak immune system, I worry (A LOT) about the germs in swimming pools. Even Jackson has gotten infections from swimming in public pools; I shudder to think about Grace in there. So, of course, Gracie LOVES the water. Murphy’s Law, or something. Recently, she has become obsessed with mermaids. She is dying for a Fin Fun Mermaid Tail—it’s the one thing she still hopes for in her heart, even knowing she’ll never get it.
Gracie just turned 7, and for her birthday she wanted a mermaid swimming party. She wanted one last year, too, but was not allowed to have one because of the cast on her arm. This year, I had no excuse. I reserved a room at our local indoor swimming facility and invited all her friends. The party was last Sunday at 10 a.m. We were picking up a friend, and planned to leave our house at 9 in order to get there early and hold some tables. At 8:30, we were getting ready, and I noticed redness and streaking in her right hand from an infected wound. Fuck. Streaking = hospital stay.
For a few minutes, I stood in our kitchen, debating whether to cancel the party and take her to the ER or do the party first, then the ER. Eventually, reason kicked in, and I took Gracie’s temperature. It was normal – we’d do the party first.
The injustice of it all really struck me on that Sunday morning. Why can’t she just have a freaking birthday party, for crying out loud? Why can we never make plans? Why does her disease have to ruin everything? It’s not fair, it’s SO not fair.
Gracie was worried for a moment that I wouldn’t let her go to her party, but once I said she could go she was elated again. She was so excited to see all her friends and have fun in the pool. I wrapped up her wounds and taped a plastic glove on her hand to hold the bandage in place and try to keep the pool water off the wound.
Gracie had a blast at the pool. She pretended to be a mermaid in the kiddie pool, which is actually a huge water playground with a beach entrance and a concrete bottom. She slid across the bottom, pretending she was wearing her beloved Fin Fun tail and having a great time. Unfortunately, sliding across concrete isn’t a great idea even for people who feel pain, and it’s a recipe for disaster for kids who don’t feel pain. She tore huge lesions into her feet, ankles, knees, and knuckles.
After her party, Grace and I dutifully trudged to the hospital. Her finger was swollen, red, and streaking. However, she did not have a fever. After consulting with the infectious disease specialist, the ER doctor decided not to admit Grace and sent us home with a prescription for oral antibiotics. Whew! That was a bit of grace, so to speak.
The antibiotics kicked the finger infection fairly quickly. It’s a good thing she had them for her feet, though; the wounds were so deep and so large that they would have been certain to become infected if she were not already on antibiotics. It’s been almost the full ten days already, and her left foot is still raw. So raw, in fact, that I’m starting to panic about her stopping the antibiotics. I’ve been calling and emailing doctors to see if they’ll extend the prescription. We are going to see infectious disease tomorrow, and I can only hope she’ll re-prescribe the meds. Most doctors won’t do that; we’ll see how it goes.
Anyway, back to swimming lessons. Tonight was to be Grace’s first-ever swimming lesson, but the wounds on her feet are too severe—I can’t allow her in the pool, at least not until I talk to the doctor about it. It’s terrible. WHY does her disease have to ruin everything?! Even worse, though, was that Jackson was able to do the lesson. She had to sit there at the side of the pool while he got to swim. It was awful, heart-wrenching, TERRIBLE. She basically threw a 45-minute tantrum in front of all the other moms and kids; I couldn’t blame her, but it was terrible.
Normally, her disease doesn’t bother her much, but tonight, it was awful. She was crying, “WHY does it matter if I can’t feel pain – I can still go in the pool!” I told her that not feeling pain wasn’t really the issue, it was the possibility of infection. But for a determined little girl, those words were empty. All she wanted was to hear me say it was okay, she could go in the water. I couldn’t. I couldn’t let her, couldn’t risk her health just for one day of fun.
The next swimming lesson is on Thursday, and she’ll have to sit that one out, too, unless her wounds miraculously heal over in the next two days. (Unlikely!) Chad is on deck for this one; he will have to deal with the repercussions. He will have to soothe her, even when she behaves terribly, will have to help her work through the injustice of it all.
It is unjust. It’s not at all fair. And there’s no way to make it right.