We got “the call” tonight. Brooklyn’s blood tests were back and she has been officially diagnosed with Rett Syndrome. We have assumed this to be true for a few weeks now but it was still hard to hear them say those words.
Absolutely nothing changes for us. We will still wake up in the morning to hug and kiss our little girl and work with her therapists and sitter (who are all AMAZING for those of you who do not know them!) We will still thank God for everything; especially Brooklyn and the amazing love and tremendous blessings she shows us each day.
She has been given a “label” of Rett Syndrome and that is OK. We plan on joining forces with all the other moms and dads of “Rett girls” to get the word out about this horrible disease. We will help educate our friends and family about this syndrome and help them see that Brooklyn is amazing and that WE will actually be the ones to learn from HER.
Thank you to ALL of you for your love, support, and prayers….please don’t stop! We have a long road ahead of us. I told a friend the other day, “Life is turning out different than we had once planned. Not better. Not worse. Just different, but with the great friends and family we have and with God in complete control we will be just fine.”
Monday, May 21, 2007
"Diagnosis Day"
Posted by Brooklyn at 8:25 PM
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1 comment:
I came upon your blog accidentally and have been reading for hours. Thank you for being so strong and an inspiration to all. Thank you also for putting together this blog. It is a beautiful journey!
Can't wait to read more!
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