One Year October 24
Dear Friends of Grace,
It was one year ago this day that I sat before my computer in tears and composed that first letter to tell so many of you about Grace’s heartbreaking diagnosis.
Well, I can only say it has been an incredible year. Last year, I was not sleeping most nights. Traumatized by Grace’s nighttime episodes, I would fearfully prepare for the horrible hours of screaming that would inevitably torment us in the darkest and longest hours. A year ago, I was still acclimating to the term, Rett Syndrome that would so quickly become a permanent part of every moment of my consciousness.
I was also trying to figure out a way and a time to tell Sam, Ben and Meg that their sister was basically doomed with no hope of improvement EVER. I spent my nights listening to my husband crying in bed while he came to terms with the devastating blow of losing our daughter’s bright future in one moment of truth. I also kept looking up to God with a knowing understanding that finally my worst fears and intuitions about Grace were confirmed ( As I had suspected from pregnancy that God had different plans for Grace). It was a tragic realization but for me, it was softened by some sense of relief and a readiness to tackle what was laid before me.
I spent hours researching Rett Syndrome online, Google-ing, emailing, and reading the dozens of messages from so many of you who wrote such heartfelt sentiments of love, faith and support.
Within one week after our discovery, Grace was admitted to Hasbro and experimenting with potent sedatives like Chloral Hydrate began. Grace was losing weight and losing mobility and balance. She was losing her appetite and interest in food and she was losing her sparkle. By Christmas she was walking less and less and her wild brain activity was discovered in an EEG requiring seizure medication. By February, Grace had stopped walking altogether. It was loss after loss.
Ok, done with the negatives. Shortly after Grace was diagnosed, we were encouraged to not limit our prayer requests to practical things like strength and patience. We were encouraged to pray for a miracle so we began to ask God for a cure ~ a complete cure. It seemed a little crazy especially since Rett Syndrome is one of the few diseases out there with absolutely “no treatment and no cure” (how many times I’ve heard that line…). Anyway, we began to pray diligently for a cure and prayer cards were made up and distributed by, at the time a stranger, Laurie, (who is now a dear friend of ours and Grace’s). Since then over 900 cards have been circulated all over.
A year ago there was no Race for Grace-shocking to imagine life without that little phrase isn’t it? A year ago, there was no hope at all. Today, we have hope. Grace’s doctor in Boston is hoping to begin clinical trials as early as next spring to reverse symptoms in girls with Rett Syndrome! That concept hadn’t even been considered as a possibility in the majority of Rett families and the medical community one year ago.
Grace is walking again, thanks to God and her physical therapist and her team of Early Intervention workers that just wouldn’t quit on her. Well, we’re not going to quit on her either. One year ago, this diagnosis was a slow, painful death sentence. Today we continue to work with Grace to keep her body strong and healthy. She is on medications to help her with various difficulties Rett Syndrome creates for her. Sometimes the medications help, sometimes they don’t. There are a few of you who have witnessed Grace’s “episodes.” They are intense, scary and extremely traumatic for Grace and anyone with her at the time. These episodes continue to be a mystery to us and her physicians so for the time being we have to accept that Grace is meant to suffer at this time in her life but we hope and pray for relief for her soon.
Grace has many painful and sad moments throughout each of her days but the silver thread of joy still pokes through and we still thankfully can enjoy moments of smiles and infectious giggles and that wonderful “Grace-sparkle”. She has brought out the best in our family and in many of you too. Without Grace, this email file wouldn’t have quadrupled over the past year. The first “Friends of Grace” letter was sent to 30 people. This letter has been sent to over 120. We have met many of you only through our beautiful Grace and for that we are truly grateful.
I want to take this time to thank you for the love and support you have given Grace and our family throughout this past year. Thank you for the emails of encouragement, the food, the cards and the great care so many of you have taken of our family. Please continue on with your prayers for a cure for Grace and and all the beautiful girls with Rett Syndrome. I wonder what I’ll be writing about next year on October 24th…
God Bless,
Tara