I have definitely been in a happy place for the past month or so. I think part of it has to do with acceptance of Reagan having Rett Syndrome and the other part is just learning to live one day at a time. I feel that Reagan and I are more bonded than ever and have so much fun together, whether it is lounging on the couch together watching her favorite tv show (Wheel of Fortune, of course!) or playing in her room and giving each other kisses.
There are still negative and unhappy thoughts that creep up on me from time to time. I try really hard to push them back down and am successful more times than not. I have those thoughts when I hear of another Rett Angel getting her wings. Also, when I get an email from the Rettnet listserve and a Mom referred to her Rett daughter as being a woman. I have the realization that Reagan might be a woman with Rett Syndrome even though I can only picture her in her early teens with this horrible disorder. I will not lose faith that a cure is within the next 10 years and then she can have all the fun of a typical girl in her teens and 20's. The thoughts flash ahead at full speed when I see a typical 2 or 3 year old in a children's clothing store and she is running around and helping her Mom pick out new clothes. But, these thoughts will no longer get the best of me and I will appreciate the things in life that I have to be thankful for, a loving and happy family.
In other news, Reagan has been doing wonderful for the past few weeks. She walks so well, babbling constantly, picking up toys along the way, and stopping to make eye contact and give a kiss. She has been on a l-carnitine supplement for the past few months so we are not sure if we are seeing the positives of this supplement allowing her to be more aware and alert or if she is leaving the Regression stage of Rett Syndrome and we will consistently see an upswing. But, it has been wonderful!
Abby's first visit to Boston for the IGF-1 Trial
3 years ago