When Aaron was tiny, I was scared of the ng-tube we used to feed him, I was terrified of a g-tube. I worried every time I had to crack open an oxygen tank that I would do it wrong. Now I do those things without even thinking, practically (sometimes in actuality) in my sleep.
But death? The death of a baby, a child, a friend's closest heart, that never does get easier. And I've been given lots of practice.
When I was pregnant with Aaron, our ped told me that as a resident he met a 12-year-old girl with Trisomy 18. She was in a PICU with pneumonia and didn't survive that stay, but still, 12! I was amazed. I asked him how she lived that long and he told me that her parents were incredibly knowledgeable and meticulous in her care. At that point I decided that would be me. I would know everything I possibly could, do everything that could be done, and Aaron would live, maybe.
And I think that's what we all do. As special needs parents we hope that somehow we can learn more, run faster, do better and keep our kids alive. But deep down we know that's not the way it works. These children, even more than most, are not ours. They're on loan from God, and can and will be called back before we're ready, (as if we ever could be ready).
Every week, often multiple times a week, I hear of another child who has gone Home. And that, that never does get easier. I'm closer to some than to others, but they all still hurt.
Today it was a beautiful four-year-old princess. Born with Trisomy 18, chips were already stacked against her. She conquered cancer. But three weeks ago she had to have surgery. They think afterwards she also contracted a virus. On Saturday, her family made the choice to place a DNR. Today she seemed like she might rally, but did not, and instead, passed away.
I ache, oh, I ache for her family. We've been asked about DNR before, asked "how far" we want to go in saving Aaron's life. The time will come when we also pull back on care, and I don't know that my heart will ever heal afterwards.
Most of the time, I'm all good with this. Most of the time, it's just the way our life is, our "new normal" even if it doesn't feel very new anymore. It's different than most people's lives, but it's still good.
But sometimes, it reaches out and punches you in the gut.
"As long as I'm living, my baby you'll be."
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