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.
Passing out on me last night after a tough few hours.
blueberriesandgiggles 
It sounds so scary and I know frustrating to standby and watch her in pain. I am so glad you had support!. As always, I send you love.
There are no words to ease your fears, frustrations and heartbreak. Only Lily’s resilience can do that. I continue to pray for a cure and for you and Lily to have an ass kicking vacation in Florida.
My thoughts and tons of prayers are with you two. Thank God for the support. One day at a time Chrissy….inch by inch.
Love you
So sorry Dear Christine and Lily. Watching the ones we love, esp family members lose their ability and health more-so when rapidly and/or too soon, is horrible, being helpless to change it for them is so excruciating. To go through that as a parent I can’t even come close to understanding the depth of the pain. How God permits us these precious little heroes and their situations, I don’t understand. But I do know that in her strength to face each day, she is offering so much empowerment to those adults who are losing their battles but hanging on. I witnessed that all the time at Blythedale Children’s Hospital. A I learned from working with destitute poor in SA, that their lack of hope is why the image of the cross is so much a part of their prayer life. Christ wasn’t a conquering hero, but one who got beaten down, and went through pain, humiliations and more pain. They look to the HS for strength. As they explained, he is one of them, and in His knowing they find comfort. I love you and you and Lily are daily in my heart and prayers.