At times I get discouraged. I wonder how a broke, small-town teacher like me can really make a difference in Grey's cause. But then I remember that I have all of you. Each of you has different abilities and knows different people. And I realize again, that His whole plan is way bigger than I can understand.
He's just a few examples that have happened recently:
My brother has made a website for Grey. He's way talented. The World Wide Web . . . it's huge! I'll link it when he's finished.
I ran into a teacher at the grocery store. We worked together a few years ago. She knows our state representatives. Huge.
My neighbor, a retired doctor, came down this evening to give my boys their Christmas presents. He has really been researching Krabbe's and UNS (universal newborn screening). He got a call while he was here . It was a doctor friend of his returning his call. His friend, the top neurologist from the Mayo clinic. Who do you think that call was about?
It's hard for me to stay discouraged when all of you are working so hard for Grey. Thank you for that. Please don't ever stop.
Below is the PowerPoint my friend put together and played at Grey's memorial. It's incredible. Make sure you first scroll down to my playlist and pause it. The Powerpoint has music of it's own.
About Me
- Nicole
- 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.
4 comments:
Oh Nicole, all those connections are so wonderful! That is great! Thank you for sharing the powerpoint. Jarrett did a wonderful job, but then again he had wonderful material to work with! Love you!
Nicole, thank you so much for sharing the presentation of Grey. I never knew him, but he touched me so much.
I get scared because if we get the diagnosis of NPC like the doctors are telling us, I feel like we don't have the "connections" either to fight for our daughter. I pray that they come together for us.
You obviously have touched so many people's lives throughout your own life. That is another gift that you gave Grey and Grey gave to you. {{hugs}}
Nicole...Grey has touched so many people and made a difference to so many during his time here with us. As I think of Grey and all that he brought into my life, I try to think of what I can do to return the favor...though I know I could never do enough.
We can just try to live life to the fullest...cause that is what would make Grey happy.
Nicole, learing about you and sweet baby Grey has given me a voice to learn more about birth testing in FL and to find out more.
I'm praying daily for your peace.......
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