Sunday, November 22, 2009

"We're On A Mission From God."

It's times like this weekend that make me realize, that no matter what, Grey was put here on this Earth and given to us to show others the importance of Newborn Screening. Our time in Buffalo was amazing! Hunter's Hope treated our family like superstars. The recognition that they gave Grey, Seth, our family, and Greyson's Law left us speechless.

Imagine a room filled with hundreds of people. On every table was a postcard of Grey.

We were honored as Grey's family. The interview that Bill and I did this summer at the symposium was put to video, along with interviews of Jim & Jill and other Krabbe families. It had all of us in tears. When the producer of the video approached Bill and I to thank us for being a part of it, we were so struck by her sincerity.

From this trip, I wanted so deeply for Seth to understand what part he played in this whole journey. Now, I have no doubt that he does.

He was portrayed as the picture perfect example of newborn screening. He was star struck when Jim Kelly approached him to tell Seth how glad he was to finally get to meet him. Here was this 6'4 Hall Of Fame quarterback kneeling down to shake my son's hand. My heart just swelled! Jim was so great with him! Toward the end of the night, Jim was raising money by riffling footballs at his friends. He would call out his friends' names and throw them the ball, them having to give the foundation $100 if they dropped it. The last name he called out . . . Seth's. Seth stood up and Jim motioned for him to come up front with him. Seth ran to Jim with excitement and Jim signaled him to go long. Seth ran out and Jim threw an autographed ball to him. Thank God Seth caught it! He jumped up and down with excitement, running to Jim to receive a high five. Maybe someday Seth will realize that very few people get a chance to catch a pass from a Hall Of Fame quarterback. Bill and I could only watch with amazement. I know Grey was right there with us, making sure Seth was not a butter-fingers.

Hunter's Hope raised over $120,000 Friday night. Awesome! The Kelly's are such an incredible family. I hope someday we can do for Texas what they have done for New York. Being with them again made me realize, that no matter what Bill and I decide to do with Grey's foundation, Hunter's Hope will always be a part of it. They do amazing things. I could never put it into words.

Our two days were spent with three other Krabbe families. Dalton is a 13 year old young man transplanted with his twin's bone marrow. He's amazing, as is his family.

Kelly also lost her son David, nearly 10 years ago, to Krabbe. She works for Hunter's Hope. She made our trip seemless, organizing everything. She was incredible!

The other family, Terry and Scott (Reb), lost their baby boy Liam 8 years ago before his 1st birthday. We connected with them this summer. Spending a couple days with them this weekend confirmed a bond shared because of our losses. They, too, are amazing! We flew into Chicago with them on Saturday and had lunch. In the Chicago airport were statues of the Blues Brothers. I love the Blues Brothers! To quote Dan Aykroyd, "We're on a mission from God." Aren't we all?

Many thanks once again to our Hunter's Hope family; Jim, Jill, Jacque, Kelly, Caitlin, and Andrea. I don't know where we'd be without you.


Marissa said...

This post brought tears to my eyes. I'm so glad your family got to experience the magic of a HH ball. After all, you are so important in the fight for newborn screening, you deserve it!
Our family attended the ball in 2006, it fell exactly on my brother's 18th birthday. They were so great to us, like you guys. They really made Matthew's birthday special...who know it would be his last here on earth.
I'm glad you had such a great time at the ball. Thank you for all you do in Grey's name. I know he is so proud of his family.

Lots of love to you,
Marissa Shilling

Charles Tubbs said...

Awesome! So glad Seth got to go.
Not surprised at all that he caught that ball.
Tell him I want HIS autograph :)

Keep the faith, Mama!


Carrie said...

Nicole, I am so happy for all of you. It sounds like it was such a poignant and wonderful event. Seth looked awesome!!! I saw your pics on facebook, and you looked great. Grey definitely set you on a mission, and the lives he has changed in his short life will be forever changed.

Texas Mom said...

I am so very proud of ALL of you! Great job Seth in catching that football from a HALL OF FAME QUARTERBACK! WOO HOO!

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