A lot of times I feel that time is moving on around me but I am standing still. It feels like I am counting the days of my daughters life, the countdown until a cure, but everyone else has moved on in life. My world stopped when we got the diagnosis. I know that I have to move on, that life moves on but it is still very difficult.
I still weep at watching other typical 3 year old girls discuss princesses. I still ache over the lost dreams for my daughter. It is a weird place to be in, one where I celebrate the success of a great transition to school but mourn that her first school experience is in a special needs classroom. I try to live with Rett Syndrome but I also try to hide it, not telling new acquaintances that the reason that Reagan is not at the party is because she tends to have meltdowns on our outings so she is at home with a babysitter.
It has been 1 year and 2 months, and I still struggle with coming to peace with the news.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago