I have been trying to pace myself into the entry of the world of Rett Syndrome since that fateful phone call of Reagan's diagnosis just 4 months ago. You see, my personality tends to be one that becomes very involved, or maybe obsessive is a better word, in my interests. The diagnosis, followed by the birth of our second daughter the next day, has kept me very busy. I didn't want to bite off more than I can chew. However, I think that I have had enough time...it's time to be involved and fight for a cure!
This evening I had the pleasure of meeting a fellow Rett Mom from the Houston area (Kella) and IRSF Special Events Program Manager, Jenni, to discuss an upcoming fundraiser. I am excited to join these ladies, and many others, in planning the 2nd annual Texas Strollothon in October...more details to follow in the upcoming month!
I can not change the diagnosis for my sweet daughter, but I can fight for her. I can not sell our house and give all the proceeds to research, but I can help bring awareness and funding to the cause by asking for help. I can not hear my daughter say "I love you, Mommy", but I can see it in her eyes...and that's what keeps me going. I hope that becoming involved will help me feel like I am contributing to the cure as well as let my wounds heal.
Abby's first visit to Boston for the IGF-1 Trial
10 years ago
AWESOME!! isnt Jenni so great? I met her at the conference-and have been working with her for our stroll in oct! we will have to share ideas! :)
ReplyDeleteThis brought tears to my eyes. Dawn you are amazing! I too jumped in and it really was part of the healing process. I know Rett Syndrome is good at killing all the dreams you had, even the simple I love you Mommy ones, but please believe me, she will do things that you never thought possible. You keep fighting for her and as time goes on, when you least expect it, she will blow your mind!
ReplyDeleteThanks Colleen!
ReplyDeleteAh my heart goes out to you! I wish I was closer to you to give you more support. I just want you to know that I will do anything for you guys, anything you need I'm here for you! Let me know when you find out the date for the Srollothon, maybe I could come! Love you guys!
ReplyDeletePlease know our entire Sunday School Class if praying for your family.
ReplyDeleteBlessings today and always,
Kaye
Psalm 46:10
Keep me posted on the plans and post of Oct ~ I'd love to join ... let me know the date so I can block it out now (hunting season for Jeremy so few weekends are mine to do as I wish) =)
ReplyDeleteKeep me posted on the Stroll-a-thon- it's a great idea & would like to participate!
ReplyDelete