Jackson was born August 2008 with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect affecting the left ventrical and aorta. Three days after he was born he had the first of three open heart surgeries at Primary Children's Medical Center in Salt Lake City, UT. In January 2009 he had his 2nd surgery, the Glenn, and in May 2012 he had his third open heart surgery, the Fontan. He is currently doing great and you would hardly know he's anything but perfectly healthy. He's sweet, cute, and as wonderful as they come and such a joy in our lives.
This afternoon Jack and I had the fun opportunity to go to My Gym in Sandy with Hopekids, an amazing group we are part of that supports families of kids with chronic and life threatening conditions. They do fun activities all the time but until now Jack has really been too young to enjoy most of their events. Not today. This was perfect and he was in heaven!
He jumped, ran, crawled, walked up, walked down, balanced, shot some hoops, made a darling little girl grin from ear to ear (two if you include me), explored, danced, tossed, created, and gave himself a big smooch every time he passed the mirror. It was great fun.
Does this kid think he's cool or what? Thanks Hopekids.
I think last year for CHD week I shared lots of scary facts and figures about CHD's and how it is the #1 birth defect in America with not enough funding, etc. That's all still true, but this year my CHD message is to encourage everyone to love like you only have half a heart. You see, when you only have half a heart (or love someone with only half a heart) you know that time is precious and the people around you are incredibly important. You pray often, and never miss an opportunity to say "I love you." You are better able to mourn with those that mourn, and celebrate seemingly small, miraculous victories. Your patience is increased and forgiveness comes more easily. And all because you have been blessed with a little insight from heaven that life is fleeting and special and not to be taken for granted.
Jack and his little half heart have blessed my life in so many ways and taught me so many lessons I can no longer count (though Jack would probably tell you "six").
Today was Jack's 18 month check up (and RSV shots). His head is still huge (95%), he still tall (32.5 inches, 75%) and he's finally starting to put on some pounds (23 lbs 6 oz, 20% - up from 15% where he's hovered the past few visits). He was very, very sad, but also very brave and earned a sucked for the ride home. Good job big guy.