We left for New York at 4:00am yesterday morning. So I woke Lu up at about 3:45. And this is her beautiful smile after nearly 10 hours in the car, two doctors appointments, a late lunch at Chili's and three feeds on the go! She is amazing!
We saw Dr. Sasha at 9:00. When she asked about tooth grinding I showed her Lu's tooth and told her what the dentist had said. She agreed with his thoughts, but she asked about Lucy using chewlery, which is the necklace she used to wear, but doesn't anymore because she was having trouble getting it to her mouth, and then keeping it in. But she said we should try again to help curb some of the damage that the grinding does to her teeth. I said ok, we would, but then I expressed my hesitation on that being a permanent solution and said that I didn't want Lu chewing on a necklace when she is an adult. Dr. Sasha said she operates under the assumption that Lucy will not grind her teeth anymore when she is an adult because there will either be a cure, or a treatment sufficient enough to alleviate most symptoms of Rett Syndrome.
I said, ok, and then I asked if her prediction when we first met her two years ago that there would be a cure or treatment by the time Lu was ten was something she still believed and she said yes. YES. That is 6 years away. 6 years is nothing. I have tried starting posts about the possibility of a cure before, but I never seem able to finish them and here's why: I seem to only be able to not let myself think about it at all, or think about it and immediately envision Lu growing up, going to college, getting married, being a mother, and all other things I want for her life. I just simply cannot only think about it a little bit. So, I really try not to think about it at all, and when Dr. Sasha said what she did, just as casual as can be, it totally floored me. Even though I never [ever] forget what she said at that first appointment, I guess for the protection of my own heart, I operate under the assumption that Rett Syndrome will always be a part of our life. I work to improve Lu's quality of life now and forever, and of course we always will, but I think I just can't plan for a life without Rett Syndrome until it is a fact. I literally seem to have a physical reaction of my gut clenching and instant tears in my eyes if I think about the possibility for a few seconds too long, because if I hang my hopes on it, and it never comes, I would be devastated all over again.
We spend each and every day planning ways to conquer Rett Syndrome for that day, but also for how to thwart it in the future; how to stop loss of bone density, how to keep Lu's spine straight, her muscles strong, and pneumonia out of her lungs. I will tuck what Dr. Sasha said back away in my mind and just let it stay there safely where I know where it is, but where it cannot raise my hopes too high until the time is right.