I know that I have posted before about the roller coaster of emotions that I have felt since Reagan's diagnosis. There will be weeks of bliss where I could not imagine our sweet daughter any other way. Then out of nowhere the heartache will surface and hit me hard. I try not to post too much during those days or weeks because let's be honest, who wants to read a depressing blog?!? But I also want this blog to be about the truthful trials and tribulations of having a daughter with Rett Syndrome.
This week I have had to dig deep to keep the momentum forward. I feel that some of my fighting power has been extinguished. It is not because Reagan is having a rough time, thankfully she is doing really well. However, it is because that everywhere I turn, there is always a roadblock and I have to "fight" to get things for my daughter. It can be finding therapists that are a good "fit" for Reagan, getting her on programs that will help her and our family, getting the insurance company to pay, getting meetings set up for communication devices, getting prescriptions filled, transferring her to the pre-school education program. I guess you get the idea. It would seem that people would realize that caring for a special needs child in and of itself is difficult. Why can't the other processes be easy or simple?
Over time it wears me down and I retreat a little. I retreat into my cozy home and our simple routines. I lay on the floor and play with my girls. I take simple pleasures in seeing both girls give me a big smile when they wake up. I give myself time to find the fight again because I know that I can not quit now. I think about all the little girls out there suffering with Rett Syndrome and how they fight daily to have a quality of life that we sometimes take for granted. They fight to learn how to use a device that will talk for them. How to use a wheelchair or gait-walker to be mobile. They fight to overcome the stereotypes of the disabled, that "mentally retarded" is a word to easily throw around when joking.
So, tomorrow I will find the strength to find my fight and continue putting one foot in front of another to be the Mommy that my girls deserve.
Abby's first visit to Boston for the IGF-1 Trial
3 years ago