*there's a reality check

I was recently reading through blogs of other heart moms and found one that was different. This mom's child needed a heart transplant. We all know organ transplants are happening in the world but coming across a specific story like this was new to me. I have her permission to share this information.


Here is the story of her daughter receiving her new heart.


This one describes how they connected with the donor family.


This is the post where she encourages readers to become organ donors. 

If you haven't yet, do so right now.
That site has a donor card you can print and sign. Then tell your family about it.

What an amazing story. It puts my daily life into perspective.

I've made some changes to the format of this blog page. I have made it easier for people to find where I've talked about our experience with TOF. I was pondering getting all of Will's heart stuff out of my system soon and then not mentioning it again here. I don't want it to define him. I have been appreciative to other families that I've learned from but I didn't exactly want to live in the CHD world all the time. I want Will to be able to forget that he has a heart defect for months at a time...except for his annual cardiology appointments where he will show off his health and progress of course. It's important that he continue to go to those appointments every year. Mainly because he will have to give his permission for them to write papers about his unbelievable accomplishments and all that. He's going to amaze us and them. :)

Then I realized I want to keep reading these blogs. Its comforting to see them living their lives - whether or not they are mentioning their child's heart. Some of them are about kids just a little older than Will. I am going to want to see how active these other kids are as they grow, how the families talk to them about their CHD, etc. How is it fair that I want to take that from other heart families but not give? I think there are some people in my life that would prefer I never mention anything about Will's health again. But I decided it's more important that I stay connected and offer Will's story. There are babies not yet born whose families will hear that phrase tetralogy of fallot just like us, will think it sounds like gibberish just like me, and they will want to learn from us like we have from others.

Now go finalize your organ donor status. :)