I am defeated.
After several weeks of watching Sarah Kate struggle with one of the worst growth spurts she’s faced, I began to wonder if the orthopedist was wrong and we couldn’t afford to wait two more years to consider surgery. She couldn’t stand for softball practice, and her “crouch” was highly pronounced. It was hard to watch.
But things started to look up last week.
At Monday night’s game, she looked better. On Tuesday, I asked her if she’d like to try a fun run on Saturday, and she said yes. We made a friendly wager – could she finish the fun run quicker than I could finish the 5K? – and the stakes were Sunday morning breakfast in bed. I set a personal record and got first place in my age group, but she was faster. I felt that the bad stuff – at least this spell of bad stuff – was behind us.
I was wrong. So wrong.
Not quite two weeks ago, my mom and stepdad were in town for one night. I had a meeting over in Mobile, so they and Mr. Andi decided on Little Caesar’s pizza for dinner. Sarah Kate had religious ed, so it was decided that my stepdad would pick her up at church, then grab the pizza on the way home.
Little Caesar’s is a mile-ish from our house, and he had Sarah Kate hold the pizza box in her lap for the ride home. When they got here, one spot on her leg where the box was touching her bare skin was red and formed a sorta-big blister. It’s been slowly improving, but over the past few days the wound started to worry me. Most of it looked much better, but the center … didn’t. I’ll spare you the details, mostly because I’m trying not to recall the picture in my mind.
At therapy on Monday afternoon, Sarah Kate’s therapist looked at it and encouraged me to go to the doctor (always listen to your gut, mommas – I was thinking doctor last week but didn’t go). Then she began to talk to us about a complication of cerebral palsy that we’ve never experienced before.
Diminished sense of touch.
Off we went to the urgent care. Again, I’ll spare you the details, but feel free to Google “burn debridement” if you want. Basically, the tissue at the center of the burn would never have healed on its own, so it had to be removed. We go back Thursday; it may have to be repeated then.
Inside, my head and my heart are screaming in frustration. Why did my stepdad think it was a good idea to let her hold the pizza box on her lap? Why didn’t I take her to the doctor sooner? If I had taken her sooner, is there a chance she could have avoided scarring? Why couldn’t she feel her leg burning?
Only one of those questions has an answer.
Of all the potential risks and problems associated with cerebral palsy, no one ever told me that my daughter might not be able to feel heat or pain like I do. Sure, there was a warning before the rhizotomy about potential loss of sensation, but there’s been no sign of it in the 7+ years since she had the surgery. From what little I’ve read since leaving the doctor’s office, this issue is probably a result of the cerebral palsy, not the rhizotomy, anyway.
How often have I been proud of how “tough” my daughter is, when in reality she just wasn’t getting the right signals from her brain?
And on the rare instances that she does complain of pain in her legs, is it much worse than I imagine?
So today I am defeated, because my daughter has been harmed, will be scarred, and – more importantly – because now I know that she is at risk of future harm because she may not react appropriately when danger is present. She’s been lucky so far, but fractures, burns, and serious cuts could be on the horizon.