Monday, August 17, 2009

Hunter's Hope Symposium

Tomorrow marks a year since Grey's first doctor's appointment that sent us on this crazy journey that we now call our life. Who would have thought that a year ago I would be arriving home from a Krabbe medical symposium? Who would have thought a year ago that Texas would have new Newborn Screening laws in memory of my son? Who would have thought that a year ago I would be mingling with Jim Kelly in this exclusive club that no parent ever wants membership in?

As Bill and I loaded the plane for the Hunter's Hope Symposium I had many mixed emotions; anticipation, excitement, nervousness, anger, loss. I had no idea as to how I would make it through this week, but I was going into it with a positive attitude, as positive as I could be considering the rawness of my recent loss.

My head spun as I realized those around me were much more informed about the disease that I didn't even know existed a year ago. Enzyme levels, mutations, transplants, gene therapy - all things we knew nothing about due to the quick progression of Grey's disease. As one who takes pride in being a good teacher, I was ignorant about the one thing that would forever change my world. But I can say that I am no longer ignorant, and will continue to research this monster that has taken my baby. I will continue to educate others in his memory.

One of the most obvious things that I first realized was that Krabbe effects every child differently. Most have similarities, but they all respond differently to the disorder itself, and the treatments that come with it. Every family chooses a different path with their little one. I can say that the path we chose for Grey was truly the path he was supposed to take. Although it was hard to be there without him, as is every day, I know he was not supposed to make that journey with us. I am at peace with that.

I met several great families and had several great experiences while we were there. As a huge football fan, it was nice to see Jim Kelly as Hunter's dad instead of the Hall Of Famer that he is better known for. His family is incredible, and we have been invited to attend their annual Candlelight Ball in Buffalo this coming November. We were also asked to do both a radio and film interview about Greyson and our relationship with Hunter's Hope. It felt good to share his story and to witness once again as to how Grey still moves people.

But the ability to connect to with total strangers was what surprised me the most. There have been a few families that I have met online through this adventure. To meet them in person was like saying hello to an old friend. No one can understand what it's like to lose a child except those who have been through it. It's a bond that's indescribable.

There are so many people that I would like to thank for helping me through this first symposium, but I just wouldn't know what to say. So, I think instead I will end with a story that touch me most (I hope this mom won't mind me sharing), followed by some pictures of my new "family".

There was a family there who took Bill and I in right away. Ironically, Bill's name, first and middle, is exactly the same as their son's. I don't even know how to explain why this story touched me so, maybe it was just because it really shows the unselfish love of a mother who knows she is losing her son. We were in a group with just moms, sharing our story. She saw symptoms of Krabbe in her son at birth. From the time she found out her son was terminal she was worried as to who her son would be with when he went to Heaven. To ease her mind, and teach her son, she found pictures of her relatives that had already passed. Daily she would show them to her son, like flashcards. She would tell him that it was OK to go with those people. That is unselfish love. I wish I had thought of it.

See you next year guys. I miss you already.

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