Tuesday, May 7, 2013

The price of normalcy

This might be a tough post to read, so I'm apologizing in advance. But I don't shy away from the tough stuff, because truly, that's what life is all about, and I find that is where God shines through my writing the most. So, here goes...

We have worked very hard at allowing Bodie to live as normal of a life as possible in spite of his completely abnormal physiology. Of course, we couldn't do this at the beginning when he was inpatient for so long. But since then, I really think we've been successful with that. I would say we take pride in it, but really it has nothing to do with us, so much as it has to do with God blessing us with enough stability in Bodie's health that we're able to allow him this normalcy.

He goes to the nursery at church on Sundays and loves it. He comes with me to watch Sierra at gymnastics and runs around like a maniac, climbing the bleachers and screaming excitedly at the kids climbing the ropes (wish I could say everyone appreciates his excitement as much as we do, but, well, we all know that wouldn't be the truth. Ha!) He plays at the park, he goes bananas at the indoor play structures at McDonald's. He rides in the basket part of the shopping cart (and I don't sanitize it before putting him in - gasp!) He gets all up into germy stuff and we just say "ok, he's living his life." He once ate potato chips from between his toes (true story). (And ok, if I'm being completely honest, I cringe when he gets into the icky, sticky stuff since I don't do that too well - but he loves it, so we let him into it.) This kid has an insane zest for life and we don't shelter him from life - AT ALL. 

He goes to preschool 3 days a week all day and LOVES it. He is absolutely thriving there. Yesterday, when I dropped him off, there was a book in his folder with pictures and artwork from his past few months at the school. It included this picture. 

It just made my heart smile to see this picture. It honestly was everything I never dared to dream of when I was pregnant with him. He was just playing with his friends at school, goofing off, having a blast just like any other 3-year old at preschool. His teachers have welcomed him with open arms and let him just be a "normal" kid.

Herein lies the rub. Bodie thinks of himself as just a "normal" kid. He does know about his heart, but I'm pretty sure he thinks every kid has had multiple surgeries. This "normal" kid is now out of his beloved preschool and on quarantine from large groups of people (other than his Mother's Day Brunch at school this Friday) until May 22nd for his cath. And then he'll be going into the hospital where he'll have iv lines placed, be put under and have dye injected into his heart - and may have part of his heart cauterized (that's a fancy word for burned). And that's nothing compared to what is coming in July. 

And, as his parents, we have to explain this all to Bodie. And make him as ok with it as possible. And thank God for the resiliency of children. Let me say that again. Thank God for the resiliency of children

There is a part of me that feels like maybe if we sheltered him a little more, or allowed his heart to limit him a little more, all of this would be a little bit easier to prepare for, for him and for us. That, if he looked at himself as medically fragile, the medical procedures wouldn't come as much of a surprise. That part is small, but it is still there, nagging a little bit.

I don't regret anything we have done to allow him as much normalcy as possible and wouldn't have done this any other way. As long as his body will allow it, we will always allow him to live life to the fullest. But as with every decision we make as parents, our decision to let him life a "normal life" does come with consequences. This is one of them. 

We covet your prayers in the weeks and months ahead as we prepare Bodie, Sierra, and our entire family for this - and that we manage to maintain as much "normalcy" as possible. 


  1. Praying. I think you've done the right thing. You'll get through this. God's grace only comes in the moment it's needed.
    PS-I've kinda enjoyed "lock-down." It's been a good way to focus more on my kids.

  2. I can relate to all of this! We have lived worry-free in all sorts of child-centered germy places for the past year. From spending Mason's first year and a half in isolation, it was so nice to get out and just be normal.

    Like you, we've got a cath coming up that we're in isolation for. Not only does Mason not really understand, my 4yr old isn't real excited about it, either.

    I guess I'm just saying I get it.

    Prayers and Hugs!


  3. Oh friend, you have hit the proverbial nail on the head for me. I literally get breathless when I think about Luke realizing what's in store for him. He has NO idea. Just the other day a family friend was talking about heart problems and said something like, "Kinda like your heart problems, Luke." Luke looked at him like he was crazy! "I don't have any heart problems!" What in the world?! I know we've let him live fully, but he is really in the dark and that scares me for when we face the Fontan. Bodie (and all of you!) are in my prayers.

  4. I also do not shelter Stevie, and I've never thought of what could lie ahead with his next surgery. I sure do wish you guys all the best. Praying that it goes smoothly. Eventually he will understand you always did what was best for him.

  5. Beautifully written- you are an awesome mom and finding that "balance" with these special hearts we've been given is a challenge. I think you're doing amazingly well and Bodie will too because he's got you! Keeping your family in my prayers...

  6. Thank you for always so openly sharing what is on your heart. I know exactly how you feel. Hug. Praying for you guys Amy.

  7. You said it perfectly and beautifully, and it's 100% truth for a heart mom...Praying the upcoming cath and surgery and for your momma heart to find peace and rest in God's perfect plan and timing. Hugs!

  8. Enjoying all the pictures you post. You have 2 beautiful children. I love the pictures of Bodie when he is "shall we say, a little unhappy." Very cute and the bottom lip says a lot. LOL Prayers are with you and yours.

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