Tuesday, April 7, 2015

The HOPE Project

I met a newly diagnosed HLHS mom a couple of weeks ago, when we were up at CHLA for a pulmonology appointment. After our conversation, she said how nice it had been to meet Bodie, that one of her greatest fears for her unborn baby boy is that he will feel sick all the time and not get to participate in stuff because of it.  

Her comment really stuck with me. I thought of my Bodie, and the crazy ball of energy that he is, and how he just LIVES his life. How he has this big huge thing that makes him different from a typical kid, but how, other than taking his medications, he doesn't really live like he's any different. How his differently shaped heart is just one thing about him, like being short or dark haired on another kid would be. How he's a little quiet and quirky at first, and how you might think he's kind of reserved (which he definitely was the morning we met this mama). But how, once he lets you in, he's just straight up goofball and really funny and quirky and wonderful.

I don't think he feels like he misses out on life because of his heart. I asked him the other day if he thought about his heart much and he said "yeah. it's cool." And I asked him if he remembered his surgeries and he said "no." And then, obviously DONE with our boring conversation, he ran off to play.  

This last weekend, I've been pondering this question, and observing him and taking lots of pictures of him. And he certainly looks like a kid enjoying life, a kid who's not missing out.

So, no, I don't think he feels like he doesn't get to participate in life. 

But then, I'm not in his head. I don't know how he feels. And, admittedly, I'm not the most unbiased person when it comes to how "typical" his life is. But, darn it, I'd sure like to be able to give his mama, and others like her, a serious dose of hope. I mean, something other than a biased mama's perspective. 

So, here is my question for my blog readers. If you know us, if you've met Bodie and had a chance to interact with him, would you mind commenting on this blogpost? Maybe a little background of how you've interacted with Bodie (church, school, AWANA, family, friends, just watching me chase the little bugger around, etc.) and then what YOU think, in YOUR opinion about his life. Does he seem sad or like he's missing out on anything? Does it seem like he lives a pretty full life?

(I'm sure the answer to this question will change as he gets older and becomes acutely aware of what his special heart will mean for him. And for Dusk and I, as his parents, our challenge and our goal will be to help him embrace what he CAN do and not what he CANNOT do. But I'm asking the question about right now. Right this second. What you've seen of our boy. 
Because this mama, and the sweet one I met at CHLA two weeks ago, really want to know the answer.)


  1. We met Amy and Bodies because we too are a heart family. My son had his Glenn and Amy was downstairs. I too needed a dose of hope. I was looking forward to meeting a mom who had "been there and done that." Little did I know how little we would actually be able to talk because she was so busy chasing 2 year old Bodie around and little did she know that that was exactly what I needed to see. Bodie has an amazing unquenchable thirst for life. He is always so busy living that he never slows down and we love him dearly.

  2. I think he lives life to the fullest and because he has a special heart it just means he has lots of extra brothers and sisters. I sure hope lucy has enegry like he does when she gets bigger. Well maybe just a little less lol:-)

  3. Amy, I only met you and Bodie once and that was at Ella's birthday party last year. Watching Bodie running around and so thoroughly enjoying the bounce house, if I hadn't known I never in a million years would have guessed he wasn't a perfectly healthy, energized little boy.

  4. Hands down Bodie and Sierra are some of the coolest kids ever. I have been around Bodie in the hospital setting, but I've also been around him at the park and at the beach and at his house, usually taking pictures. And you know what? He's like every other kid his age. As a lifestyle photographer I am around a LOT of families and tons of kids, and I swear, I would never know that Bodie was "different" to any of my other little clients. Remember our very first session, Bodie was just 2 and it was next to impossible to get him in a family picture because he preferred to play with my cart? Yeah, that's every other 2 year old. Remember him running around like crazy the year after? Yeah, that's every other 3 year old. Remember him playing in the waves and then getting cold and not wanting to be by the water anymore? Yeah, that's every other 4 year old. Remember just a few weeks ago during our valentines mini where we were freaking out every 2 seconds that he was going to end up in the water? Yeah, that's every other 5 year old. (As a mater of fact, Townes, also HLHS, ended up IN THE WATER when he was 4 years old, so that's normal!) Remember how we had a hard time ripping him and Sierra away from the playground after our session? Yeah, that's EVERY OTHER KID ON THE PLANET. Remember when I went to drop off some Christmas stuff at your house for CHLA and Bodie immediately made me sit with him on the floor and we played Monopoly, and then we did some crafts with the penguins? Or the time we had a purple minion/sword fight in his room while you and Sierra went nuts looking for a pink headband? Totally normal 5 year old stuff. He doesn't see me too often yet he knows me so I immediately get to see that goofy kid come out as we play. Just like every other kid.

    Like I said, I've spent some time in the hospital with Bodie, but I've also been honored enough to shoot your family nearly every year and you know what? Your kid is like every other kid. Over the past few years I've shot dozens and dozens and dozens of kids and Bodie is no different to any of them. If anything he's an even more awesome kid, SO funny and such a complete joy to be around.... Even when he's being a punk and demanding to use your dead laptop to watch a movie while we talk about oils :) Hats off to you mama, you're doing an incredible job with that little ball of energy.

  5. I know Bodie from church ... I would have guessed he had 2 hearts and 4 cups of coffee in him. He has enough spunk and spirit for all of us.

  6. I only met him once at the heart picnic and he was climbing playground equipment with the best of them! Didn't seem to be missing out or held back at all! :)

  7. My favorite memory of Bodie thus far is of him following us out the door ready to come home with us because, according to him, we're "fun". No one would ever guess he has heart issues. He jabbers and plays non stop; a hundred percent all boy. It's quite incredible and I can't imagine where he gets all that energy. No, Amy, he doesn't seem the least bit bothered by his condition. He appears to be happy and healthy. I'm thankful he's done so well.

    - Aunt Karen

  8. All I can think of is the lunch we had together at subway with our boys (dressed identically). They were hilarious and t thought Bodie was the best most cool kid ever! And then our boys "sat" and "ate" about the same. It was amazing!!!

    - Jennie

  9. Well my last visit with Bodie included him wanting to skip his Mac and cheese and go straight on to his cookie! Pretty much the exact behavior of every kid his age!! Bodie is a constant reference of strength and resilience for me. I know few kids that have endured as much as him yet he is always full of life! I give a lot of that credit to you and Dusk who help normalize him into society...he is so blessed!!! HOPE!

    - Lucy

  10. Bodie is an Amazing Miracle Boy. He looks so Happy.

    - Cousin Elaine

  11. Like every kid I know, Bodie skips through life totally unaware that his parents worry, have fears, are going beyond what they believed were their limits of strength.

    - Aunt Joanne

  12. The key to a happy kid is their smile, and Bodie is always smiling! You are doing an amazing job and both Bodie and Sierra are truly happy! I love seeing all the pics you post ... That's s kid who isn't missing out! He's enjoying each day to the fullest which is all we can do for ourselves and our children. Xo

    -- Debbie

  13. There is no doubt in the world Bodie loves life. From walking into to TWISPP with his hot pink leg warmers on to being the only kid at not wanting to stand in line at COOS (because he was too excited to go outside.) How could I ever forget hearing him squealing with joy over CHLA when I went to see him (and our party with reeses cups as mommy went to run errands). The one that will always stand out most though is going to see him after the fontan. 8 days later he was running around the hospital and practically jumping of benches. (He would have if he didn't get busted by mommy) still till this day seeing how energetic he was blows my mind.

    - Chelsea