Help me celebrate Grey's Gifts. Life is short, but sweet for certain.
Wednesday, April 29, 2009
I know I promised yesterday to fill everyone in on Grey's Senate hearing today, but in the midst of this fantastic news that we have all worked so hard to achieve, I find myself lost for my little man. At times I cannot even fathom the fact that this law, Greyson's Law, is only here because my son is not. I think it struck me yesterday, after the ayes far outweighed the nays, as the gavel struck the table, as everyone else moved on . . . everyone but me.
Tonight I feel like Eeyore, and until my cloud lifts, I'd like to wait to talk of our success, until I can give it the credit it deserves.
I am the mom of 4 boys. My youngest, Greyson, was diagnosed with Krabbes Disease. He left his broken body behind on 12/12/08, just six days shy of his 1st birthday. I am a Special Education teacher. My husband is a pediatric nurse. We have been married for 16 years. Together, with the help of many, we have used Grey's life and loss to try to expand Texas' newborn screening program. HB 1795 was signed by Governor Rick Perry on 6/19/09, establishing Greyson's Law. However, it lost it's funding before even one baby was screened. We have established Grey's Gift Memorial Foundation to teach other of the importance of newborn screening.