TheRaceForGrace.com

Once again, Friends of Grace, 

We have, as expected, learned that Grace does in fact have the mutated gene that confirms Rett Syndrome.  The course is set.  The severity and speed of progression remains clear.  Grace is beginning to have difficulty with walking, balance and use of her hands. Eating is also becoming a difficulty. She has trouble staying asleep at night and I am spending lots of time with her in the wee hours.  I cannot help but remember the pain that I was in for all nine months of my pregnancy with Grace.  Of all five pregnancies, Grace’s was the most painful.  The uniqueness of my pain with Grace was that I felt ok while I was on my feet, but at night when I laid down to sleep, I experienced extreme pain from the lying down position.  It seems symbolic to me that once again, I am driven to stay on my feet and continue to labor for the sake of love and Grace as long as I have breath in my lungs and for as long as Grace is on this earth.  It has been said in an old Irish poem about mothers that we “suffer in their coming and in their going”.  What mother wouldn’t do this for her child?  I feel renewed in my physical strength because I know that God will give me the endurance I need to get through each day and night.  So far, so good.  (more…)

This was sent to me by a woman that I work with at Ashaway School…
I couldn’t help but be astounded by it’s relevance.Love,
Tara (more…)

Hello Everyone! 

Just an update…

Gracie is currently at Hasbro. Her symptoms continue to worsen and manifest. Doctors are experimenting with Chloral-Hydrate (for heavy sedation) and neurontin (anti-seizure) and monitoring her breathing and tolerance of those meds. She has been having violent, crazy episodes at night and has been unable to sleep at home so this is a necessary step in assisting her to remain comfortable and ease the stress on family life. The exceptional team of doctors and staff at Hasbro have been incredibly supportive not only to Grace but to our family. She should be coming home tomorrow with a better medication plan and the hope of some new safety equipment that we need for her that can be provided through some of the incredible agencies that are available for us to tap into for funding (like a super-duty crib). (more…)