The CHD Community: A Special Club

I am a sorority girl. There. I said it. No shame in it! I decided I wanted to join Sigma my junior year of high school when a really cool youth worker who is now one of my dearest friends (and we also happened to marry cousins so now we're family) drove up with that sticker on her car wearing a really cool t-shirt. I asked her what Sigma was and she told me about this amazing Christian sorority. I wanted that! So by the time I got to UNT my freshman year I knew exactly what I wanted -- to rush and pledge Sigma. I wanted it sooooo bad. I still remember carefully picking out my outfit for every rush event and going to my interview. Thankfully they gave me a bid and the rest of my college years were filled with fun, friends who really got me and the building of relationships with really great girls, some of which I am still actively doing life with. I wanted to be in that sorority, that community so badly and it was everything I dreamed it would be. That was a group that I chose that just so happened to choose me back when they handed me a bid.
Now for a group I did not choose to be in: The Congenital Heart world. Most would have turned down that bid. But it's not a bid that you can turn down. My sorority bid came on really pretty paper in a really pretty envelope delivered by really excited girls. I guess the equivalent of the bid we got for the CHD world was a sketch of Pierson's broken heart that his cardiologist artfully drew for us when he was gently explaining why P's heart was broken. Really it resembles more of a kidnapping than a bid delivery. As much as I would like our child to be heart healthy and to still be living in complete ignorant bliss not knowing what a congenital heart defect really is, that's not our situation. We were chosen to be a part of this group, this community.
The kicker here? We are thankful to be part of this community.
No, I haven't lost my mind. I know to some of you that sounds crazy. Why would you want to be part of that community? Everyone's sick! It's scary in there! People lose their children in this club. That's all true, but stick with me here.
I'm thankful for this community and this group because without it we would be completely lost and feel so alone. You've heard me talk about how 1 in 100 children has a congenital heart defect before. Because of how common this is there is a great community out there that not many people know about. It's made up of heart dads, heart moms and 40,000 new heart heroes in North America alone every year. These families have lived through the horror of learning their child has a broken heart, handed their broken babies over to capable strangers, many of them have seen their children's hearts beating through their still open chests. We've seen blood draining out of our children's chests through tubes, gathering in a tank of blood and fluid that would make most people vomit. We've watched as lines were pulled out of our children's hearts right there in the ICU as we watched and our kids didn't even flinch.  We've seen our precious little children put up a fight for their lives. We've seen them hurt. Oh, how we've seen them hurt.
So here we are, in this club. It's a helpful club filled with people who really get where you're coming from, even when your children don't have the same CHD. It's because of this club that we were able to meet a family who had a child with the same CHD as Pierson. These club members shared with us in brutal honesty and with incredible compassion what Pierson's surgery would be like, what he would look like the first time we saw him and even showed us their infant son's scars right in the middle of a Ben and Jerry's within minutes of meeting us.
The CHD Community is filled with Internet friendships. We find ourselves praying for children who live thousands of miles away and crying when a precious members of our community pass away too soon. We rejoice when a milestone is reached. We share stories and bounce ideas off of each other. We can talk about our kids hearts to each other and actually feel like the other person is following along because we all got a crash course in cardiac anatomy and CHDs.
And if you're really lucky, you get to be a part of a local chapter of this community. We are that lucky. Our local chapter of this club is called Amazing Little Hearts and it has blessed our hearts. The two big whole ones and the little repaired one. ALH is how we got to meet the couple that mentored us before Pierson's surgery. They are a great support system for families. Yesterday they put on their annual "Heart Party" honoring all the CHD survivors. I'll admit I had to choke back tears at one point watching all these little miracles running around as if nothing had ever happened to them. Precious little miracles. P had a blast!! I love that P will have memories of the hospital other than just heart surgery and "the noisy room" as he called the congenital heart surgery unit. We got to see our precious child life specialist Margarita, P's heart surgeon, Dr. Mendeloff and visit with some of our fellow community/club members. Every child, every family there has an incredible story to tell. To think how many of us would have empty arms tonight if God hadn't intervened and provided these doctors and nurses with the ability to save our children. My heart breaks for those who do have empty arms... that could be any of us.
This might not have been something we would have chosen, but we're thankful the Lord chose it for us. It's all part of His bigger plan for us, and Pierson's story. It's an honor to have received a bid.
That same awesome youth worker who is now my cousin-in-law that introduced me to Sigma wrote me these precious words in the days immediately following P's diagnosis: "Had this situation not happened, this "world" would have never existed for you, but new doors have been opened. Take them. Trust in God to lead. To heal. To transform. What a beautiful picture of taken a broken heart and making it heal and do what it needs to do. Much like God does with ours, transformation."
I get it now. Humble member, right here!

P on top of the catterpilar tail with his CHD Survivor ballon that he "never" wanted to take off his wrist.

Family pic @ the ALH Heart Party

A pic the hospital PR rep took and put up on their Facebook page

P and his wonderful, talented heart surgeon

P and his popcorn and the tree in the hospital lobby. 2 of his favorite things!