Feeling Sad

This was supposed to be a good things post and there are lots of “Good Things For Gwendolyn” for me to post about — she started preschool again this week, she held a salamander yesterday, she did a little bit of gardening (not really her thing), she swung on the swings, Daddy went to preschool with us, and there are other things that are helping to keep my heart together. Gwendolyn does that — she is what keeps me glued in one piece.

Three children with SMA passed away this week, including our sweet friend Karson Riggs who passed away yesterday. Karson has been sick for some time, growing weaker, but it doesn't make it any easier. He was a very brave little boy who has been through enormous medical challenges, but he fought through them with his adoring big sister and loving parents by his side. Karson loved Toy Story and especially Woody. He was Spider-man for Halloween — an absolutely adorable one. He just beamed with his sister by his side and she clearly doted on him. Karson was a beautiful baby and grew to be a darling two year old…two year old. He would have been three in April, but still two. Yes, only TWO.

I am heartbroken to lose another friend to this dreadful disease — heartbroken. But mostly I ache for his family — his kind, thoughtful, wonderful family. And I wish the realities of SMA were very, very different.