It is becoming more and more clear to me that instead of fighting against rett syndrome, I'm working with it. I'm beginning to truly accept it. To truly accept Avery; and myself as her mom.
I have written before how I am not the "me" I expected to be and how Avery isn't the daughter I expected (isn't it nuts that we even EXPECT anything from our children?). It is hard to get used to the fact that your life isn't anywhere near what you thought it might be. The life of a special needs mom is very different from that of a typical child. I know because I am both. All the things that come easily to Nolan have never been easy for Avery-some of those things she may never do.
On days when it is just Nolan and me, I always second guess myself (do I have everything?-diapers, wipes, sippy cup, medication, stroller, arm braces) and then I remember I don't NEED any of that for him. I don't need anything. It is a foreign feeling for sure to be able to just pick up and go.
But I think over the past 6 or 7 years of dealing with Avery being "different" I have ingrained this silly thing in my head that keeps telling me "doing XYZ will be too hard with Avery". Recently that is a voice that is getting quieter and quieter.
There has be a definite shift. Its part me, part her. She is growing up and I am too. I wish there were a better way to describe it other than "getting used to it" but that is what I come up with every time. She has not yet become the quieter, calmer girl everyone told me she would become as she got older but it doesn't always matter to me like it once did. We have been doing things with her that we might not have in the past and been getting pretty cool results. We still have our roadblocks and speed bumps and detours but we are more used to that now.
Today it was just me and goose for a couple hours. Typically I would think to myself-I cant go anywhere, I'm stuck here with nothing to do, its way too hard to take her out" but not today. I took her the craft store and to the plant store. She yelled a little at both places but seemed to be enjoying the new spots. We held hands and I just rubbed her little fingers with my thumb and thought about how lucky I am to be her mom. And when she yelled? No one stared. No one looked at us sideways. Maybe they did, but I wasn't fighting it.