I have read that being the Parent of a child with Special Needs means you either become a hermit or develop thick skin. I admit that the girls and I have been keeping a low-key profile for the past several months and staying home a lot. Part of that is the planning and coordination that it takes to get 2 young children out of the house and go somewhere, especially considering that every thing is a 30 minute drive from our house. The other part of that is not knowing how to cope with the pity glances from other people. I don't blame them as I am sure they are more curious than anything considering that Reagan's diagnosis is not one that can be easily figured out from her appearance. She can appear to be a typical 2 year old, until you notice the arm braces that stop her from mouthing and also realize that she can speak no words back to you when you say, "hi, what's your name."
Lately, however, I have been trying to take them to more playdates, or just to the store to do a little shopping. Sometimes things go as planned and I leave feeling confident and reassured that we can live a "normal" life outside of Rett Syndrome. And then there are other times. Like today when we joined some friends at an indoor inflatable gym. I have to first push down my pain of seeing other children run around and play, laughing and giggling. I am getting really good at disguising those feelings. But, if one thing goes wrong and reminds me of the painful journey of Rett Syndrome, the floodgates of tears just might open. Reagan did not enjoy being there today and made it obvious. Yes, she is still a 2 year old and I hear from parents of typical children it can be a difficult age. Nonetheless, the playdate today was a big fat fail. I am hoping that Reagan was just having an off day and we can attempt it some time in the near future again.
Abby's first visit to Boston for the IGF-1 Trial
5 years ago