“Do lizards have hearts?”
My youngest kid is very curious about the most random things, and so the “yes” I said in reply came out with a smidge of apprehension. I never know what follow ups will come next from him.
Turns out, the questions were pretty easy to answer: “Do buildings have hearts?” “Do babies have hearts?” “Do daddies have hearts?” “Do mommies have hearts?” “Do little girls have hearts?” (The last one meaning his sister Ellie, a little girl, as opposed to his Mommy, a big girl.)
“Yes, baby. She does have a heart.” I said, and “a really valuable one” is what I thought.
I very serendipitously met Ellie’s cardiologist’s family at the local bakery recently. He was not there, but his wife and children were.
Before we connected the dots and realized we shared a common friend, I leaned over to congratulate her on her well-mannered kids. When I take my kids to the bakery, first off, it takes more than one of me; I have never taken all three of them in by myself because, second, I don’t have enough hands to keep my kids’ faces off of the display cases, pay, carry the snacks and stop Ellie from sprinting behind the counter to pretend she works there every.single.time.
I had been watching this mother and her kids in my periphery for a while before I talked myself into sticking my nose where it didn’t belong. The longer I sat there I thought about how just a few days before, I had given myself a pep talk on taking all three of my kids to the Home Depot alone on a Saturday morning.
Honestly, I was very pleasantly surprised at how they did. The oldest pushed the youngest two in the buggy, and I walked just ahead because, as he said at every door and aisle, “Ladies first.” He taught the younger two a song in French while I looked at the tile options and before long, they were all singing “Al les crococo” in unison. Walking out to the parking lot, I held my head high, and I thought about that when I watched this woman get all five of her kids a treat and seated by the window without screaming at them – and with a smile. I was really in awe.
Initially, I think of Ellie’s heart as valuable because of how much money is tied up in it. We keep the final bills from her surgeries in a box where we put other things from her life like her first dress, hospital bracelets and sketches of her organs in hopes of one day putting them in a baby book. I doubt that will ever happen, but maybe the kids will find it when they are moving their parents to a fancy retirement home and can read line-by-line about all of Ellie’s scars.
There is more to her heart’s worth than just that, though.
Her heart disease has taught me about a lot – about medicine and about myself. I do know the difference between her “stats,” “sats” and even her “sat stats” and can very quickly set up oxygen tubing and tank for a baby with blue lips, but I also am more confident in having honest conversations. Because of that, I have made deeper relationships, new friends and have been truly impacted and enriched by so many people I met along the way.
I have had the opportunity to serve and share to make small, but real changes for the treatment and diagnosis of heart disease.
I get to write about our heroes and all of the work they are doing on this front in order to educate others, and our family has started an endowment in Ellie’s name that supports the work of the Heart Institute including research, technology and care at Arkansas Children’s Hospital.
When I think about Ellie’s life, there are so many people who have literally and figuratively touched that heart who don’t even know it.
From the moment she was diagnosed, she was passed around and studied by more people than I will ever know who made decisions – big and small – that all culminated into the wildly stubborn, intensely loving, smart, creative child we have today. If it weren’t for each of them – from the team that got her to her first breath, ambulance driver and EMTs, intake group at ACH to the nurses, therapists, doctors and housecleaning crews – take away just one piece of the puzzle and her story very easily could have ended differently.
I wanted to tell the cardiologist’s wife and his children how much he meant to our family. I couldn’t find the words to adequately cover the amount of appreciation and fondness we have for him, but tried really hard.
I do hope a core memory for his children is not that a crazy woman, nearly in tears, was oohing and aahing over their father, but that their dad really is Superman and the personal sacrifices he and the whole family make for his patients are really priceless to those of us who know him professionally.
Honestly, there are a lot of things that could go in the “cons” column if I were making a list of whether or not to have a kid with heart disease. They would absolutely out number the “pros,” but the value added from the negative is something that I don’t think I would be able to experience otherwise. And because I don’t get a choice, I see that as precious.
February is Heart Month, includes Congenital Heart Defect Awareness Week and the first Friday of the month, you are invited to wear red for awareness of heart disease.
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