The Heart of Our Journey...

We were privilege to get to be a part of a really special event on Sunday. The Whole Hearts Foundation held a wonderful and beautiful event at the children's hospital in Dallas where Pierson is treated. I love the Whole Hearts Foundation. Here is why. It was founded by two very special heart parents, Sarah and Matt Hammitt. Matt Hammittt is the lead singer of Sanctus Real. Their baby boy Bowen was born with hypoplastic left heart syndrome. They almost lost him a right after his first open heart surgery. They are making a huge national reach to help children and families affected by congenital heart disease. We were honored to be part of this event. We got to meet Matt Hammitt and hear him sing "All of Me" from his solo album "Every Falling Tear" Out of his mouth and heart come words and truth that every frightened, overwhelmed heart parent has felt. I think that's why I've never met a heart parent who has heard "Every Falling Tear" and won't admit to sobbing their way through a good part of the album. It's not that it's sad, it's just that the songs speak what's gone on in our hearts too. We also heard him speak his heart about why the Whole Hearts Foundation is important and how he hopes to help others. I'm so excited that P's hospital is teaming up with Whole Hearts.What an incredible platform the Lord has given him to reach others who are hurting and confused. God has definitely uniquely equipped the Hammitts and those who run Whole Hearts. This is just the beginning. I can only imagine the impact the Whole Hearts Foundation will have 5, 10 years from now. Whole Hearts, the people who run it, and especially our local outreach coordinator and his wife (the incredible Hamilton family) have been such a blessing to us. I am so grateful.

Matt Hammitt and our family

Sunday, as I looked around at all these beautiful children and these families I was struck with something: Every single family in here is uniquely equipped to face the trials of Congenital Heart Disease. In the days following Pierson's diagnosis we constantly heard "I don't know how you guys are doing this" or "You're so strong". The fact was that in our eyes we were complete wrecks. But God was sustaining us and equipping us for everything that laid ahead.
These families are incredible. These children are incredible. It's not just walking through the valley of congenital heart disease that makes these people incredible. It's the incredible strength shown. I speak for my family and probably many others when I say this: This strength does not come from any one of us, but from the Lord. We are uniquely equipped. Blessed. We've been gifted strength to endure surgeries and bad news. The ability to encourage others. The ability to somehow overcome our anxiety about our child, their future, their heart, their life. We've also been given the ability to love uniquely. Before all of this, I would hear of someone who had a sick child and think, "oh, how sad." I would probably pray for them. But now, through this, our hearts have been softened. We feel deeper, we cry easier. Not because we are weak, but because our hearts have grown and our knowledge of what a sick child endures has been expanded. If anything, I think that this has helped us become more compassionate, less hardened. I never would have thought of myself as hardened or not compassionate before, but maybe I was. Maybe I had some walls up that God knocked down. This is a blessing.
No one ever thinks they will see their child's heart beating through their still open chest. No parent ever thinks they'll see the inside of a children's hospital for anything more than day surgery. No one thinks they will ever see their child intubated. No one thinks that they will push their child's nutrients through a tube in their  abdomen instead of giving them a bottle. No one ever thinks their child will need to be in a wheelchair or have to depend on every breath with the aid of a ventilator. No parent should ever have to think about losing their baby. No one should have to bury their own child. No one should have to do any of these things, but they do. Yet, we survive and are stronger for it - even though it hurts. Thousands of heart parents -- in various stages of their children's lives -- We have more than just broken hearts in common, we are all uniquely equipped. Our hearts are broken for our children, for each other, for the cause -- but our spirits are strong.

Made me think of this verse:
Romans 8:37 No, in all these things we are more than conquerors through him who loved us.
Thank you Lord for equipping me.
So I have a fun picture. Wanna see?

We were not sure we would ever get to see this when we received P's diagnosis 9 months and 5 days ago. He is enjoying soccer and we are enjoying watching him. He has scored 1/4 of the goals for him team. (His team has only scored 4 goals this season, but hey, he has 1 of them!) Not too shabby for a kiddo who had heart surgery 8 months ago. He does tire easier than the other kids on his team, and that's hard to watch, but he's still doing great.
He gave us a little scare 2 weeks ago. He just stopped playing mid-play, walked off the field and said he was too tired and he wouldn't/couldn't go back on. He had seemed a bit more fatigued lately, so I took his blood pressure at home and it was a little high on the arm, and 10 points lower on his legs -- same thing at the pediatrician's office. So we'll watch that. It's probably scar tissue building up on his aorta. Nothing to freak out about yet, just something to watch.  He did much better and pretty much played the entire next game with the exception of two breaks after getting tackled and face planted in to the ground and then dead legged by his own team mate.
It may just look like a bunch of little kids running around on a field to some, but when we see P out there we see God's hand and His provision. We see hope and a future. We have peace. We know that our baby boy is uniquely equipped too.