Tales of a TET Baby: Kid's Heart Challenge

After Zane's first heart surgery we went fully into denial, trying to forget what we had been through and power ahead. We spent the next five or six years not being involved in any heart warrior things. We didn't raise awareness, we didn't help raise money, I rarely discussed our story with anyone, and definitely didn't try to use it for the greater good. I had never let myself be a part of the wonderful heart family communities that are available to heart families around the country. A couple years ago I opened myself up to finding the communities online, I started donating to various causes that were working with heart families, and that different organizations that are funding research that will help future heart kiddos have an easier journey. Here is a link to my previous post about various heart organizations that I donate to if you're looking for good ways to help.

This past spring, shortly before surgery, I got a call from the American Heart Association Jump Rope for Heart Oklahoma representative. Zane had told her his story and she was calling to see if we would like to be a part of the new Kid's Heart Challenge as one of the forty faces of CHD. There was as split second where I had to decide how we were going to react to the trauma we had been going through during this surgery experience. Would we try to go back into denial, would we try to block out the trauma, pretend this wasn't our reality, or were we going to become fierce advocates for the heart community. I say there was a split second because the decision was very easy this time around. I knew we could never go back into the blissful denial. I knew we would constantly be looking for signs of his heart needing another repair. I also knew that we could use our pain, our trauma to do some good. Zane was eager to share his story and I Was willing to relive all our pain to try to help other heart families who have much sadder stories than ours.

That's what we did. I went and told our story. It was very fresh at the time I was telling it. Zane came as well, but between the bright lights and the whole experience being so recent to him, he didn't say much. Months past and I wasn't sure what they were going to do with the footage. This past week they sent the video out in an email to all the parents of Deer Creek Students, at all five grade school. When we 

  

Needless to say Zane has been excited for heart week and very excited to start Kid's Heart Challenge at his school. I got him a new shirt for CHD Awareness week. This one might be my favorite, it's so painfully true. I have to say Zane looks great in red.

February second last year was the beginning of heart month. We were all dressed up in our red as we headed to Zane's cardiology appointment. That was the beginning of our surgery journey last year. A year later I was at work on the first day heart month and couldn't help but me overcome by emotion at the thought of how far we had come. February 7th is that start of CHD Awareness week and it just so happened to be a snow day. So we got all dressed up in red for our day at home.

This sweet face is why we raise awareness, why we beg for donations, why we spread the word that CHD effects the lives of so many children. The research that was funded years ago is how this kiddo still gets to be here with us!

Thatcher got in on the fun, requesting to wear big brother's shirt too! He doesn't even know how brave his big brother is yet. 

Last Friday was the kick off assembly for the Kid's Heart Challenge at Zane's school. Zane had made some videos for the assembly. This assembly was also when Zane was going to have his Cape ceremony. All the heart survivors in the schools get a cape at the kick off ceremony. When Zane heard they were doing this his first question was if there were any other heart warriors in their school. He didn't want anyone to be left out. Statistically speaking there should be four or five kids, but Zane was the only one at this ceremony. Thatcher and I came decked out in our red.

The assembly was very emotional for me. How far we had come.

Zane and his beloved music teacher.

All of Zane's classmates and friends have been on this journey with him as well. He got a card from every single first grader last year after surgery. He was showered with gifts and snacks at the end of the year. His friends and their families have been amazingly supportive. I think it's no accident that one week into the fundraising for Kid's Heart Challenge the second grade is leading the donations by almost a thousand dollars. 

It was such a joy to get to celebrate Zane's journey with all the amazing teachers and friends at his school. A big silver lining of Zane's surgery last year was me being forced out of my comfort zone and having to get to know all the teachers at school. Everyday I sent a terrified kid to school, whose chest was hurting, who was literally scared he might die, and I had to trust that the staff and students would help him walk through this fear. The blessing of this was I came to realize just how amazing all the teachers and families at our school really are. They rallied around him, they calmed his fears, they kept him smiling, and comforted him when he was scared/sad. These amazing people have truly become a part of our family, friend I most likely never would have made had we not gone through our heart journey last year. So to get to see them celebrate him was very emotional.

Before the assembly started the AHA representative, who I have become friends with, came up to talk to me. She said she wasn't going to show my video to the kids because it is pretty long and not exciting at all. I was fine with that, the kids don't want to watch some lady talk about her kids surgery. However, she did say that the previous day she had sent the video out to all the Deer Creek Elementary school and the other four elementary schools had sent it out to all of their parents. Over night the Deer Creek Schools raised $24,000. Now I don't know that that has anything to do with me. However, I would like to think that putting a personal face to a cause might have helped inspire people to give where they might otherwise have been able to ignore the situation. Putting a face to a problem is very powerful, especially when it is someone from your own community. This week Zane's principle sent it out to all the Prairie Vale parents so hopefully we raise tons of money for this great cause.

I was humbled to hear that and it made it all worth it. I don't like how I look in the video at all. I was self conscious to be making this video at the heaviest I had ever been. I was some what upset that none of Zane speaking ended up in this video. I watched it and thought all these things. I have told this story so many times I'm sure people are tired of hearing it, not thinking about the hundreds of people we have never met that will see it and connect to our sweet boys smiling face. In the end I think it's doing a lot of good and that is all that truly matters.

I can't say it enough funding the research is truly what gives every heart family hope. My prayer is that in the near future TET kiddos like Zane can have all their valve replacements done through cardiac cath. That's something I know the scientist and doctors are working on right now. To think that our sharing our story might in some tiny way help to lead to that scientific breakthrough, that possibly some family may not have to go through the hellish year we went through last year because we shared our stories and inspired people to donate money to this cause, that would truly be the greatest thrill of my life. So here is the link to the video for anyone who hasn't seen it or doesn't know how story. Also here is the link to Zane's Kid's Heart Challenge fundraising page. If you want to help fight for a better future for heart kiddos like Zane he would love you to support his cause.