I just have all this time on my hands. I guess that's what happens without Grey there to fill them.
Today I have set up a Facebook account (look me up, I have a page and started a group called Grey's Gift), made a big breakfast, cleaned out the refrigerator and scrubbed every shelf, did several loads of laundry, picked up the house, and spent time with Ry jumping on the "jumpoline" as he calls it. That's a lot of stuff, but I know I have to keep busy.
The benefit for Grey is rapidly approaching. I cannot believe all the support coming from every direction. My friends at work who are putting this whole thing together are incredible. My brother and his family are flying in from California. I can't wait to see them. I just need for this to be huge, for Grey. I need it to make a difference for someone. I actually need it to make a difference for a whole lot of someones.
I watched an interview today with Jim Kelly, the founder of Hunter's Hope. If you know anything about Krabbe's Disease, you know that his son died from it. Not only did Jim Kelly get newborn screening for New York mandated, he is now working on getting Universal Newborn Screening for the whole country, state by state, starting with those who test the least. He, his wife, and the foundation are true warriors. They could have stopped with their state, but they didn't.
I need to figure out where to start. I need to figure out who to talk to and how to get them to listen. It just upsets me so, that in America, my son died because some people find it too expensive to screen for every treatable disease. It makes me crazy that President Bush has had a newborn screening bill on his desk since 2006. Too bad he didn't sign it. I'd still have my Grey.
1 in 100,000 babies is affected by Krabbe's. I pray that yours is never that one.
Subscribe to:
Post Comments (Atom)
3 comments:
Nicole,
I know how you feel about this drive to fight to make a change so our children's diseases have a purpose of affliction (I actually just blogged about it tonight). Even though I still have my Hannah, our fight is still very similar. I am also in Texas (outside Houston), perhaps we can work together and pool resources on some items? I'm going to be talking to another mom who has made amazing progress in the fight against Niemann Pick Disease type C tomorrow, and she is going to give me suggestions on really getting my "fight" going.
Just let me know if you are up for it.
Carrie
http://www.littlemisshannah.com
I saw your comment on Little Miss Hannah's blog so I came over to say hello and express how your story has touched me. I can not even imagine what it is like to lose a child, but I am so glad you are finding the strength to fight for a change in this. It is so upsetting to know that this is treatable and easy to discover. I hope the benefit goes well. Take care.
I saw your comment on Carrie's blog and wanted to come here and read more about your beautiful son. I'm so sorry for your loss. I wish you the best of luck in fighting for a change in the way things are done for newborn screenings. To know this was preventable is truly heartbreaking.
Post a Comment