Self-unaware

In my last blog, I posted this picture of Luke, taken while we were in the ER a couple weeks ago:

This is not the norm. Luke talks very little about his "superman scar" and shows it off even less. He likes to wear his swim shirt and unless his buddies initiate shirtless play (boys, right?), he likes his shirt on.

At the basketball end-of-season ice cream celebration, Coach David spotlighted each of the eight players. David is a very close friend of ours and has been a part of Luke's story from day one. When Luke made his first basket this season, you would be hard-pressed to find anyone in that gym more proud.

I asked David to send me the gist of his spotlight of Luke and I wanted to share. Partly because Luke's reaction was so surprising to us and partly because I want to record the kind of people we have encircling us.

"When I think about Big Luke the word that comes to mind is HEART. It wasn't hard to notice that whenever Luke took the court he always played the game and ESPECIALLY defense with a lot of heart! But for those you who don't know, Luke has a special heart. Luke was born with a heart that didn't quite work like most hearts. That heart needed a little help from doctors to make it nice and strong.  Luke has had two surgeries done on his heart just after he was born. I was there at the hospital when Luke had tubes hooked up to his body for weeks and was fighting to stay strong.  I remember praying for him a lot and he was super brave.  Luke's heart is a big reason why I decided to coach this team the last couple of years. When Luke exercises, his heart has to work much harder than most kids.  When he breathes, in order to get oxygen it would be like you or me sucking air in through a narrow straw while breathing hard.  So to see him running around on the court trying his hardest with that big smile was awesome! I'll never forget during our last two games of the year Luke made his first shots of the season! One in each game!  Those shots were money and it was incredible!  I wanted to make sure to get a chance to coach this incredible kid not knowing how long he'll be able to play. And he didn't just play.....he played AWESOME! So Luke....I want to congratulate you on fighting hard every time you played (he goes into some Kung Fu Panda moves because I said "fighting"), and being such a superstar and having heart for your team!!  I love you buddy!"

During the part about the surgeries, Luke pulls the collar of his shirt down to show off his scar.

Now, I know six year olds are not the most emotionally mature and maybe he reacted a little out of embarrassment at being spotlighted, but he had never initiated attention to his scar or heart defect before this week.

I've met a lot of heart kids — in person and in blogland — and I would place Luke on the far end of the spectrum of heart defect self-awareness. Or maybe I should say self-unawareness. Some heart kids talk freely and proudly of their heart, their scars and their surgeries. They have oxygen, or g-tubes, making their differences more noticeable at a glance.

Luke? Not so much. When asked a while ago by a playmate, "What is that on your chest?" He responded with, "Oh, just a scratch." Another answer he's given is, "That's just where my heart was fixed." It's very simple to him. He knows he has had heart surgeries as a baby. He knows he sees a heart doctor. He knows he takes medicine to keep his heart strong. But until recently, the dots have not connected to make him aware that his experience is radically different from most other kids.

In the bath the other night, Luke asked me if Laney had a "superman scar". I said no. Then he asked if I had one or if Dad had one. I said no, just him. "God made your heart unique and special." He was truly saddened by this. "I don't like that I'm the only one in the family with a superman scar." It was so interesting to me that he was just putting this all together! I guess Rog and I have done a better job than we even intended to make sure Luke never felt anything other than normal.

Because it was intentional on our part, to let him come to his own conclusions about his special heart. We haven't kept it a secret from him, but he in no way knows that his heart defect is serious and complicated and has long-term ripple effects. We took to heart Dr. Stefanelli's assertion that Luke will self-regulate in these early years. Sometimes it took everything in me (and I wasn't always successful) to let him go and not stop his activity. We have held the belief that until Luke needs to know, we don't want him to know he's different.

He may not have been the quickest on the court, but he had as much fun as anyone out there.

It feels like a big line to cross for us. We have never wanted Luke to use his heart defect as a manipulation tool. But we also don't want him feeling discouraged that he isn't as fast or strong as some of his friends. And of course, as the Fontan nears, we know we will need to navigate those conversations as well.

This decision of when and how much to talk about your child's condition is of course individual to each family and I by no means feel like we have all the answers. What I do know for sure is that I love Luke with my whole heart and want him to be all the stronger for what he's been through. I want his character strengthened and his heart to trust Jesus when he faces adversity and comes up against limits. I want him to know he was knit together by God, for a purpose, for such a time as this.

Lord, may it be so. And give us the wisdom and discernment we so desperately need.