Thursday, February 28, 2013

Thank You!!!

Yesterday,  I received the most amazing, thoughtful gift.  Becky sent me a photo of this gift while I was at work and I thought it was a cake.  I thought, awesome.  I'll stop by the grocery store on the way home and buy some ice cream.  I forgot the ice cream, but didn't forget about the gift.

Moby Dick

This is Moby Dick.  This is literally Moby Dick and the Pequod made from the pages of Moby Dick.   This is the Great White Whale and the waves of the high seas as he is swimming next to the Pequod.  This gift represents the gift we were given by TGen as I described in my post Moby Dick has been spotted...the chase is on.  The gift of a genetic diagnosis for my family.  This gift from TGen is priceless!  This gift from Karl and Chrysta Richards is priceless!  This gift will go along side our symbolic Pequod Seth made when he was in pre-school.  This was made and gifted by Jodi Harvey-Brown and shipped from Pennsylvania.  Beautiful, amazing, thoughtfull...words cannot describe what this means to me.

Our symbolic Pequod
People have asked me countless times:  "I don't know how you guys do it?"  Well, some times I don't either.  But this much I do know.  There is no way in hell we could do this alone.   Yesterday is only one example of several people who have gone out of their way to share our burden.  It's people like Chrysta who are so thoughtful.  It's people like Sharron who sent my blog to everyone in her contact list and made up flyers of Team Belnap so she can hand them to people.  It's people like my co-worker Lacey who asked me if I would help her write a research paper for her biology class on mitochondria (I am so excited to help her and educate her biology teacher).   It's people like Jodi who donated this gift to us after she read our story.

It's people like my co-workers who are all wearing the Jeans for Genes, Wear that you care ribbons today at work.  It's people like Heidi who have helped us get Team Belnap up and running.  It's people who have donated or shared Team Belnap with others.  It's people who have shared our story.  It's people like my friend Jason who sent me a thoughtful email of encouragement.  It's people who have supported us publicly and privately.

Today is Rare Disease Day and Becky are privileged to go to TGen again for some special, long-awaited events.  Rare Disease Day  will be celebrated all across the country.  Today, in honor of this day, TGen will release a video about our family highlighting the progress they have made with rare diseases and our family.  Today,  we will meet with other parents at TGen.  Becky and I have been asked to be on TGen's Parent's Advisory Council.   Today is a special day.

Today, my heart is full of love and gratitude.  Thank you Chrysta and Karl!  Thank you to everyone!

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