When Zane was diagnosed we made a hard and fast rule at our house that there was to be absolutely no Googling of anything to do with TOF, TET babies, congenital heart defects, nothing at all. Google holds a wealth of knowledge, but with that comes horror stories, worst case scenarios, and all sorts of things that just aren't true. It's difficult to sort through all of this on a normal day, but impossible when we are in going through something terrible. When every night you are going over the worst case scenarios in your head, you don't need a computer screen to back all those things up. I was determined to live in the moment, dealing with whatever our scenario was, not all of the other terrible possibilities. I stand firmly behind this rule now and always advice parents of patients getting a new diagnosis to do the same.
I never Googled Tetrology of Fallot until about a year ago when I had a nursing student with me and I couldn't remember the fourth thing that was wrong with my son's heart. That in itself was truly unbelievable and made me strangely happy to have come so far. But I was trying to teach so I Googled it. Wow, the search results were horrifically frightening. Multiple surgeries, staying in the hospital for months, brain injuries from lack of oxygen, death, the whole gamete of terrible things that could, and have, happened to TET babies. I quickly shut all screens and went back to my never Googling TET policy.
Then this week, when I was posting things to Instagram with the hashtag tetbaby, I clicked on the hashtag, just to see what was there. And I was opened up to a whole new world that I am sad to say I had shut out. A world that wasn't trying to terrify you, but that was trying to bring support and hope to other families who had children with TOF and all sorts of other congenital heart defects. There were shirts and beautiful quotes raising awareness that congenital heart defects are the number one birth defect in the US. That every fifteen minutes a child is born with a CHD. Tons of pictures of survivors, heart warriors, as they are called. Heart mom t-shirts, heart mom poems, websites where parents can go for support, to connect with parents who have children with the same condition as their own.
I never looked into any of this out of complete fear of what I would find. I have always known that Zane's story is the absolute best case scenario. He was a rock star CICU patient. He had zero complications, he never turned blue, he isn't on any medications, he never needed a feeding tube, he never got sick, and on most days we can pretend that his heart condition just doesn't exist. I think it's because of this that I never tried to find forums or some sort of CHD awareness sites to share our story on. I guess I felt like if I shared my story, of the perfect case scenario, I would feel like I was bragging or feel like a jerk when there are so many worse, horrible stories there. People who have lost children, people whose children have spent most of their life in the hospital. I guess I felt like my story just wasn't bad enough to share.
Turns out, after immersing myself in the CHD world for a day, I realized that our amazingly perfect case scenario is the one story that is never being told. I am confident that Zane is not the only child whose TET story played out this way, but that story isn't being told. So I am now firmly and proudly a Heart Mom!!! I am a mother of a Heart Warrior, I've taken up the cause, and am ready to spread the word. The good news that though not all CHD stories end as well as ours, they can.
This doesn't mean I regret not Googling TOF while I was walking through our journey. I don't, I was coping the best I could, I know it was self preservation, and it worked for me. My advice would be Google Congenital Heart Defect support groups or websites. The one I found that I really enjoyed was Little Mended Hearts. This site offers a way for parents who have kids with CHD to connect with other heart parents. It shares resources, support groups, and knowledge that I know would be really helpful to other heart parents. I signed up as a heart mom, ready to lend support to anyone I might be able to help.
So now I'm a proud member of the Heart Mom club. This is a club no one really wants to be in, one that everyone would gladly give their membership card up in exchange for a healthy kid, but also one that we are all stronger for being a part of. My first act as a member of this club was to buy multiple CHD awareness shirts. But a close second was signing up for the Roar-N-Run virtual race. This race benefits Mended Little Hearts and is the best kind of race because you don't have to go to an actual event and you have the entire Congenital Heart Defect Awareness Week (Feb. 7-14) to finish your distance. I'm sure all my ELMS Foundation team members will be joining me in this event and I highly encourage everyone else to do the same. If you are already going to be running or walking, why not join in the fun and help raise awareness of CHDs and help a site that provides support to all my fellow Heart Moms!!! Leave a comment and let me know if you are going to be part of the fun. I'd be happy to hear about and thank you in advance!!!!!
**Stay tuned for Zane's #RockYourScar photo. The contest goes on all week, though I don't know that I can officially enter since I refuse to join facebook, but God knows Zane rocks his scar everyday!!
No comments:
Post a Comment