I’ve said this before and I’ll say it again: Rett Syndrome is no fucking joke. Even for a relatively healthy and high-functioning girl like Lily.
Even though her team of caregivers and I actively manage her food intake and output, she still gets terribly backed up from time to time. Last night, however, was exceptional. She was in so much pain and was trying so hard. None of my standby tricks worked.
It was a tough call to make – do we spend the night in the hospital or do we ride it out at home? I’m so grateful to have a plugged in network of Rett moms to turn to in moments like these. And also so grateful to have had Shamekia the nanny (soon to be nurse) on hand with me for much of it. Stephen was on standby. And John came over to drop off supplies from the pharmacy. I felt very supported. But also very scared. And helpless. It’s in moments like these that I wish I went to medical school. I made the right decision last night to stay home. But that might not always be the case.
Thankfully Lily woke this morning with a smile (we finally had some success unclogging her late last night). She’s the most resilient person I know. She’s my hero.