Embracing privilege

The medical review board is supposed to meet tomorrow and make a decision as far as listing Colman for a heart transplant. There are a few different scenarios that could play out tomorrow. The MRB could make the decision to list Colman, table the decision because they feel like he’s not quite sick enough or decide he’s not a good candidate for a transplant. When they took Colman’s case to MRB last month, they decided that Colman meets all of the criteria for a heart transplant, but they tabled the decision until additional testing could be completed.

Colman and I traveled to Houston twice last month to finish up the additional tests, which were pulmonary function tests and a treadmill test, and for appointments with a psychiatrist and a psychologist. Right before we went in for the treadmill test, I spoke to one of the people that was in the MRB the month before and she said that the cardiologists were hoping that the pulmonary function tests would show there was something wrong with Colman’s lungs, which would explain his fatigue. Anything but the heart, right?

I get it that they want an easy fix–anything as opposed to having to change out his heart. However, it rankled a little bit with me that somebody somewhere was wishing for yet another health problem I might have to manage.

Colman passed all the pulmonary function tests with flying colors. On one test the pulmonologist told me that a score over 50 percent is usually good and Colman scored in the 110 percent range. His lungs are pristine. However, he did fail the treadmill test, which points back to his heart as the main problem.

I’ve had several people ask me about what I’m hoping for. I can’t really say. I hope they make a decision that’s in Colman’s best interests. If they feel Colman can wait safely for a while not on a heart transplant list, then that’s fine with me. We’ll continue monitoring him here in San Antonio and in Houston. If they feel it’s time to list Colman–and we know it will be a long wait because of his antibodies–then that’s fine, too. I’d hate to be on the list and take a heart that another child needs worse than Colman.

Kevin and I had a parent/teacher conference with Colman’s teacher at school and he’s doing really well. Except in art. It’s funny because I know he fancies himself quite the artist, but he’s been skipping out of art class. Colman’s teacher told us that when it’s time to go to art, Colman gets in line with the rest of the class and walks down to art, but by the time she gets back to the classroom, Colman’s back. I’m not sure if he just doesn’t go in the classroom and circles back around, or tells the art teacher, “Later.” I’m baffled because I would have never left a class. Not even in high school. Even if I hated it, I would’ve sat there like a good little prisoner. But that’s just such a Colman thing to do.

A couple of weeks ago, I was tucking Colman into bed and he asked me, “Mama, am I your most important kid?”

I thought to myself, You’re my biggest pain in the ass. I was feeling worn out from the transplant evaluation and all the trips to Houston.

Instead, I said, “All of you guys are equally important to me. You require the most of my time right now, though, because your health is so complex. If Rowan or Liam needed me in this way, I’d be there for them, too.”

“Only really good people deserve to have a kid like me,” Colman said.

And just like that a nine-year-old turned what felt like the heaviest of burdens into a privilege.


12 thoughts on “Embracing privilege

  1. Wow, what a great kiddo! He has more strength than 100 grown men! With that kind of positivity, he can overcome anything! Praying for the best!

  2. What a wise fellow. I agree, and believe he lucked out in the parent department!
    Keeping you all in my prayers.

  3. I just read your post. As usual it was brilliant and touching, but this one has left a huge lump in my throat as I sit here getting my hair done fighting back the urge to cry! What a beautiful story. I pray for a happy ending my dear friend.

  4. I am Kevin’s classmate from school. I have known him for a long time. I I even chased him under the table in kindergarten and tried to kiss him. Lol. I was reading your story and am touched. I will be continuing to pray. What a beautiful family you are. I am a Mom a and I feel the same way. Your kids know they are loved.

  5. Wow, Heather, my heart goes out to you. I know you must feel so exhausted with all this. But you have the best kids (all of them!), and you are so strong with an amazing attitude… even if you don’t always feel that way. 🙂 XOXO

  6. So, I’m sitting in my office reading your post with tears in my eyes. That bedtime story is just precious and honest and so touching. Thank you for sharing.

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