Wednesday, November 14, 2012

Hitting Close to Home

I know that Congenital Heart Defects are common. I know that they affect 1 in 100 births. I know that 4 in 10,000 babies are both with HLHS. And, through my work with Sisters by Heart, I've met hundreds of families affected by this diagnosis. But I'd never met anyone from my life before. From my life before I became a heart mom. Until now.

Last Friday, I got a call from a close friend. She was in tears. Her words "Amy - we had our 20 week ultrasound today. The baby has been diagnosed with HLHS...." shook me to the core. Oh, the worry, the sadness, the devastation in her voice was unmistakable. 

I'll be honest - I see a lot of newly diagnosed families. (Sisters by Heart has received 5 new nominations in the last 24 hours alone!) And there is a percentage that don't make it. The death and devastation HLHS leaves behind is a hard pill to swallow. And, for that reason, I distance myself. I have to. I have had Facebook friends who ask me how I deal with such a tough walk, because they see my Facebook posts about babies going in for surgery, about kids passing. But what they don't get is that the ones I post about, they are literally a fraction of the ones I know about, the ones I hear about every single day. They are the ones who get through the walls I put up to protect myself. I care about all of these babies, of course, about all of these families; but if I didn't somehow distance myself, I would be in a pool crying all day long

But this family, my friends, there is no wall there. Anna and Ryan are friends of my heart. When they lived out here in Los Angeles, we saw them every week at church, they came to our Home Fellowship every Wednesday night, we vacationed with them in Mammoth when I was newly pregnant with Sierra and was so nauseas I could hardly function, and again with them in Big Bear when I was in the third trimester and felt Sierra hiccup for the first time. They were there, praying for us when we lost the baby in between Bodie and Sierra, and supporting us and praying when we received Bodie's diagnosis. When God led them to move to DC, we had their going away party at our home. They're not just acquaintances, they're friends.

To have a close friend face a new HLHS diagnosis is kind of blowing my mind. There is no doubt in my mind that God aligned our paths the way He did so that Bodie, and Dusk and Sierra and I, might light the path for their new baby, and Ryan and Anna and their little boy Nathan as they begin this journey.  

My emotions are kind of all over the place to be honest. Hearing Anna's fear, and her pain, and her spirit in trusting the Lord no matter the circumstances, and in turning her son over to God before he is even born brings back so many memories. I remember standing in Anna's shoes, the fear, the worry, the unknown. I remember wondering if we were doing the right thing for our son, if I'd ever get to meet him, to hold him, to see him take his first steps, say his first words. It's a lot to take in. 

But today, as I laid next to Bodie, staring at the wonder he is, snuggling with him, listening to his soft, even breaths as he slept, I am reminded that all the fear, every last second if it, has been completely and totally worth it. 

I so wish I could fast forward Anna and Ryan to this stage in the journey, with a sweet little boy to love and parent. But I can't. So I pray for them instead. And I ask you to pray alongside me. Pray for a miracle for their baby - and peace for Anna, Ryan and Nathan as they get to be witness to a miracle. Because, really, even seeing an HLHS baby have the opportunity to live, to thrive, is a miracle. And praise God for that.


  1. Please let them know that I am out there! :)

  2. Definitely praying for them as the begin their journey. {{{HUG}}} I am sure it has to be incredibly hard to have it happen to a friend.