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Jesse's journey for bilateral (double) lung transplant for cystic fibrosis

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Telling Your Kids You Need a Transplant

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by Jesse Feb 4, 2017

3 min read

We finally had the talk we’ve dreaded for years: telling Boy (7yo) that there’s something seriously wrong with Dad.

Ever since he can remember, I’ve been up before he wakes up and I am doing my medicine in the same spot every day. He used to be my couch buddy and sit up under my armpit and we’d watch TV while I did nebulizers. He liked my Vest shaking him. Now Parker is my couch buddy and likes the Vest’s soothing noise and shaking.

What we’ve always told Boy is that my lungs were made differently and need medicine to stay healthy. When I’d get sick (which has been onceย other than colds), I needed different medicine or rest. When it was my heart, it was my heart. So we’ve always been able to skirt around the idea that Dad is different, even though he’s the only dad who sits for every sports practice and game instead of helping out at least once per season.

That night, I needed to put the air on to catch my breath and relax and Mom decided it was time. She texted me to be sure, and I told her to go for it, because I knew she’d positively put more than enough thought into it. To nearly quote paraphrase:

“Do you want to know about it? Dad’s lungs are sick and need more help, so these tanks and that machine help him breathe so he can still do things with you. But his lungs are going to get sicker and sicker until they are all the way sick. (“all the way” something in this context has always been our way of saying “until something is dead”) But his doctors have a plan. They are going to give him new lungs.”

At that notion, he started cracking up, which was a bit distracting, and I wasn’t sure if it was a coping mechanism from the previous thought about “all the way sick” or just the crazy idea that you can just get new lungs. Of course, we weren’t going to get into the details about what has to happen to another person for me to get new lungs, not yet.

“So when they give him new lungs, he’s going to be gone for a long time in the hospital and you won’t be able to see him. But when he gets better, he’ll be all the way better and he’ll be able to play more and do more. You know how some dads run around at soccer? Maybe Dad will even decide he wants to run! (I don’t like to run, but you bet I will!)”

This made him very happy and we went on with our evening. I went out with the guys for Bible Study since I missed the last one being too sick and I don’t know if I should keep going out that late. When I got my Everything Bagel with 8oz of cream cheese and sat down, she texted and said “He wants to plan a party after your new lungs to celebrate.” Yeah, I almost cried with happiness that he got it and had processed it that well… and that he cares.

So, that’s how we did it. How did you do it?

Reader Interactions

2 Responses to Telling Your Kids You Need a Transplant

  1. Mildred says

    February 4, 2017 at 8:52 am

    Sounds like y’all handled it very well.

    Reply
    • Jesse says

      February 4, 2017 at 11:09 am

      Time will tell, I guess. ๐Ÿ™‚

      Reply

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