Tuesday, September 21, 2010

Buffalo Bills & Ironman (September 2010)

What an inspired day I had today! I was proud of the babies getting their new leg braces/boots today for the 1st time from Mr. Spencer. I think Dori remembered him from his duet with Chris the last time we were there. We are easing them into wearing these... eventually they'll wear them for about 6-9 hours per day. Today they wore them 2 hours on, 2 hours off, over and over. I told the Ben and Alex it was the babies' Ironman legs. They thought that was cool.

Then at lunch I went to hear Jim and Jill Kelly. Jim Kelly used to be the QB for the Buffalo Bills in the 80's. They wrote a book Chris bought me last week called "Without a Word". Their son, Hunter, was born with a lysosomal storage disorder called Krabbe Lukodystrophy... it's in the same family of genetic terminal illnesses that the babies have. Hunter never was able to utter a single word but his love for his parents, his sisters and life were very evident to all who knew him. Their book and the message they shared today were truly SO inspiring and such a blessing to Chris and I. Chris was gone today working in Nebraska, I really wish he could have heard their program today. So many things in their book is so familiar to us, and it was great to read it and hear it and be moved by it.

When I went to get my book signed, I thanked them for being a strong voice for the parents of children with genetic disorders. I showed them a picture of Dori and Wynnie, and then I lost it. (Tears, lips wouldn't stop quivering, snot running down the nose, the whole nine yards). But they were kind and I was so embarrassed. I started off so composed and by the time they signed my book, I left the line looking like a hot mess, sobbing. N-i-c-e.

On another note, plans are in full swing for the most awesome Halloween party this side of the Mississippi. For those of you that went last year... you know what I'm talkin' about! Party for a great cause! To raise money for the National MPS Society!! And see if this is the year I convince Chris to go in drag!! (ha ha!) Sponsors are getting locked in, prizes are being secured, and secret costume planing are all underway. Saturday October 30th is the big night, so get ready!

1 comment:

  1. When I first saw the pictures, I didn't even notice the boots. They are not very noticeable . . . I noticed how cute the boys looked and how much they have grown and changed-wow :-)You and Chris must be so proud. God bless you all.