One of the parents of another HLHS kiddo posted this drawing and story this afternoon. I just thought it was a perfect example of how very deeply this diagnosis changes lives. I see this in Ezra and Isaac in particular, of course, as they too carry a heavy responsibility for their brother's medical care.
Elijah is sleeping over tonight at Grandma's house. As I was packing his overnight bag, I showed him his bottle of aspirin that he takes every evening for his heart condition, reminding him that he needed to take responsibility to take his medicine. When I asked Elijah if he thought he could remember that, he hesitantly agreed that he "probably would." About 5 minutes later, Moriah comes back with this picture. She explains to Elijah that it's a schedule so that he would be sure to remember all his medicine. The "X" shows not to take the pill with dinner, and the "1" on the right above Elijah holding a bottle of tiny pills indicates to take the pill before bed. Then with a big smile on her face, Moriah hands her brother the drawing and tells him not to worry because now he will never forget when to take his medicine.
And that's what it's like having a sibling with a chronic health condition. Moriah is always protective of her big bro - asking questions about his health and concerned about whether he's being taken care of. #heartsibling #chdlife #sweetsister
Remarkably, a few minutes after I saw this post, a boy at the YMCA park came up to us and asked if Job had an oxygen tube. We get a lot of these questions (which we all prefer to the parents rushing past us as they shush their kids who are quite audibly asking why "that baby has that thing in his nose"), so I assumed one of us would say yes and the boy would move on to play.
Instead his eyes lit up and he excitedly told us about his friend Madison who has an oxygen tube. "She has half of a heart!" he exclaimed, "and so she needs oxygen to help her. At school she has a big tank she needs help pushing around, but when we go out for recess, she gets to wear a small tank in a backpack. Sometimes she get really tired from running though, so then we stop running and sit and talk to her."
When we were at the Y, hearing the story for the first time, Ezra and Isaac and I were just really excited! Usually we get blank (if not horrified) looks from people who ask us what's "wrong" with Job. But recounting it now makes me tear up because it was so encouraging to get a glimpse of a sweet friendship full of so much sympathy and understanding for and of CHDs.
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