We are the family that other families pity.
I’ve written about this before, when we were in the neurologist’s waiting room with my, at the time, 6-month-old daughter.
The texts, the well wishes, the prayers– it’s all wonderfully sincere, as they hold their healthy children to them, silently harboring their gratitude that they are not in my shoes.
I was that parent, once upon a time. A long time ago, though, and only for a few months, before my daughter’s condition manifested itself. And, now, my son has so many things wrong, the pity from my family and friends is overwhelming.
Pity isn’t the only emotion, I know. There’s concern. And love. And genuine hope for our future.
But, if we’re all being honest, there’s a lot of pity. Thank goodness their kids can swallow liquid without needing a feeding tube. Thank goodness their kids have two functioning kidneys. Thank goodness their kids have two working, symmetrical hands.
Thank goodness their kids aren’t having open heart surgery in eight days.
It’s okay, it’s normal. I was there once, too. I’m still there, sometimes, as most of Jackson’s medical issues can be resolved by him maturing, or surgery. He could be afflicted by so much worse.
But, this is our reality, and it hurts, and it’s scary. And, I hate being the family that others pity. No one ever imagines during their pregnancy that their child will be so bad off, that instead of the happy, joyfulness that should be surrounding a new baby, pity is the dominant emotion.
I hate where we are. I hate what he has to go through. I hate being grateful for the prayers and well wishes. He needs them. We need them.
But, I wish we didn’t.