It is such a cool event because it was designed to give kids some good memories of the hospital. There were so many fun activities. There was possibly one of the funniest clowns I've ever seen. He juggled while on stilts and had a four legged walk. They had face painting and all kinds of stuff I didn't get around to see. Oh yeah, and the Tampa Bay Lightning Thunderbug!
There were several children that stood out. One was an 11 year old named Tristan. I started talking to Tristan and quickly discovered that I was talking to someone who had a very much above average IQ. Tristan has already had three heart surgeries. He knew exactly what was wrong with his heart and about the new procedure done over a year ago that will hopefuly be his last. I'm glad I met Tristan now because someday he's going to be very successful!
These children I met are the my local inspiration. Since they will be on my mind for the entire ride, I wanted their autographs on my helmet. I received many awesome autographs.
In my entire life, I've only met 2 children and one adult with my specific heart defect... yesterday I met 3 children with my heart defect. It was really awesome meeting them!
I also met an 8 year old, Avery, with HLHS. Avery plays baseball at the age group above him since he is so talented. He's a great pitcher. I'll be keeping my ears open about future stories from Avery!
I met a little guy Luca, who is going to have his third surgery tomorrow. I could tell he's an extremely strong kid. He was laughing and having a great time yesterday! We'll be praying for him and his family.There were two really fun heart friends that gave me their autographs, Allison and Emily. You could tell that they were having a wonderful time.
Yesterday was priceless. I can't wait to start Bike4theCHF and ride for all of these kids. They've all been through so much. Many of them are on an ongoing journey, but they all have amazing attitudes. I hope the money that we raise on this trip will fund research that takes away at least one procedure from one of these kids.
Nels, you've got such a gift for connecting with heart kids, big and small, and heart parents and really caring. Keep telling all their stories. I can't wait to read more this summer when you're on the road.
ReplyDeleteThanks Kristine:) I'm looking forward to meeting heart families this summer. There are so many tough kids... and parents that do anything to fight for their kids.
ReplyDeleteYou are going to love Jeni, Nick, and Jill.
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ReplyDeleteNels, I keep thinking this over and I imagine that because you have papvr or papvc (repaired)...your likelihood of meeting others with the same condition are less than my daughter's who has the similar condition of tapvr. I remember our pediatrician saying that another baby was born into her practice and simply faded away one morning while sitting in a bouncy seat. She was born with partial anomalous and since it is such a silent killer--no one knew. My daughter's condition was life and death from the moment she was born. The doctors at the birth hospital in a Chicago suburb had never seen her heart malformation before and were very puzzled about her until they contacted Dr. Backer at Children's Memorial. All that is to say...again, thank you for what you are doing and to impress upon you again what a miracle other "heart families" find yours to be for many reasons.
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