Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns all clean. –Maya Angelou
I am not generally a bitter person, rather I work hard at keeping it under control. I try to maintain my focus every day on the positive and the tasks at hand, instead of getting overwhelmed by the big picture. The big picture is daunting, because it involves how Rett Syndrome will play out over the next 10, 20, 30 years. That scares me to my core. So, I choose not to think about it and focus on the day to day on how to care for Reagan and overcome the monster that has taken over her body.
But, earlier today it got the best of me. It's not something that I am proud of but this is my space to express the frustrations of our journey with Rett. I usually tend to push those feelings down deep and put on my "I accept it" face. I was not sure why today was different and it was not until after a good workout, a glass of red wine, and an even better cry that the deeper reason for my bitterness hit me.
This time of year is especially difficult. The Holidays have me longing for my daughter to be able to use her hands like a typical 4 year old to play with her Barbie dolls that she opens on Christmas morning. It makes me ache to hear her voice speak to Santa when she sits on his lap. And besides all that, it's a reminder that just two years ago during this time we were anxiously waiting to hear back from the Geneticist on the outcome of the test that would forever change our lives.
So, this is one last post to put it all out there because tomorrow we are back to our normally scheduled program of "I am coping well". Stay tuned for happier posts and cute pictures!
Abby's first visit to Boston for the IGF-1 Trial
4 years ago