We’ve been a long way from how things were supposed to be for a while now. Still sometimes it surprises me with a gut punch so hard it takes my breath away. That is what happened today.
After a massive week we were having an amazingly typical Sunday. We had unpacked enough to make life bearable and Claire and I had recovered from our jet lag. After a lovely morning at church we came home to have lunch and for the first time ever, hang out at our new home. It was a perfect day for it, 78 degrees with a gentle breeze blowing the leaves in the oak tree. I went to the grocery store while Jared and Claire bummed around the garage and watched Chloe ride her bike around the cul-de-sac.
It was perfect, better than we had dreamed of, so freaking normal it was amazing. Then boom, Claire’s brain couldn’t handle the good, it seized and sent her body into the rhythmic spasms that take the color out of her face with it, her limbs went cold and eventually limp once the seizure stopped.
The seizure was horrible but not the worst part. With some rest Claire bounces right back. The hardest part today was watching Jared’s heart be torn apart by it. When we had a beautiful baby girl I knew that she would break his heart but not like this. She was supposed to drive him crazy by not listening to his guidance or being hormonal and defiant. He was never supposed to have to hold her cold limp body. He wasn’t supposed to have anger like this to process. Rett syndrome steals so much, not just from Claire but everyone who loves her as well.
Some days we rise above, we press on and get out there and do what we can. Some days we don’t. Some days we sit and we grieve, struggling to breathe, hoping that tomorrow will be better.