This week, it has been a year since we took Grace to the hospital after she had so drastically changed from a mentally present, vivacious little girl into a limp, disinterested newborn. Staring at her hands, ignoring her own feet, crossing her eyes and head tremors. It was all very scary, especially when we were ushered straight into a hospital ward on arrival. We didn’t even sit in the waiting room – we were instantly ‘in’ and being poked and prodded by doctors. After we knew that Grace would be staying in hospital overnight, Steven went home to be with the boys and I just called my dad and we both cried on the phone. “I think she’s going to die” I said. For the next 6 weeks, without so much as a whisper of the name of a condition for us to hold onto, I sat in my house, watching my baby go backward every day. Like Benjamin Button.

I didn’t eat. I just cried. I lost about 10 pounds.

One day she could roll over. The next, it was gone. One day, she just laid in a fetal position like a newborn, staring at her uncontrollable hands. I’m sure the doctors in the hospital regret not covering their name tags because I remembered all of their names and called the ward repeatedly. “Does she have Muscular Dystrophy?” I demanded. “Cerebral Palsy?” No one had the guts to tell me that she’d already been tested for Rett Syndrome and that the appointment I was waiting for was to actually tell me that my little girl had the dreaded brain disease.

I said to the head of the ward, “Do you really expect me to sit for 6 weeks not knowing if my baby is going to DIE?!” She just said, “It’s ok to wait 6 weeks.” She knew.

It’s been a year and I think my heart has gotten used to the pain. It’s always there, but somehow I can forget it for most of the day. But behind the pain, behind the ache I have to see my little girl stand or even just sit up (or use her hands for goodness sake!) is the knowledge that God has a plan for Grace. And when I see how much people love her and how much she gives to them, I know that good will come of our life with Rett Syndrome.