I HATE Rett Syndrome. That has been repeated multiple times today as I struggle to come to grips with my reality that my sweet 2 year old daughter has Rett Syndrome. Some parents are googling helpful hints on how to potty train their todder. Not me, nope - I'm researching arm splints for my toddler so she can no longer chew on her hand all.day.long (aka mouthing). I've heard from other Rett parents that the dramatic increase in mouthing could be caused by teething (2 year molars) or reflux. Oh, if only she could tell me what hurt. Instead we are alternating teething tablets and children's Tums and trying the process of elimination approach.
We went to the bookstore today and as usual I went to the Parenting & Family section to find some useful books. After a few minutes, I realized that this section no longer has any helpful books for me. Titles such as "What to Expect the Toddler Years" and "The Happiest Toddler on the Block" can not give me any advice on how to raise a daughter that has Rett Syndrome. Thankfully there is a Special Needs section where I found a great book titled "The Elephant in the Playroom". It's a book where parents like me write honest stories about the struggles of raising children with special needs. I am hoping their insightful words can ease my anxiety.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago