I Hate the Pity

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.

5 thoughts on “I Hate the Pity

  1. KHC says:

    Pity you? I commend you, praise you, admire you, and applaud you. A woman of character; putting the needs of others before yourself. I say “others” because when people face challenges in their life, that’s the moment their existing colors shine even brighter; meaning it’s clear you are a defender, an advocate, a voice for those you love in general; not only for and starting from the moment your precious son was born. These are qualities to be admired. So, no pity from me. You have a beautiful, strong and resilient baby boy. Clearly characteristics he gained from his amazing mom!

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  2. thatcherulysses says:

    I hope my comment didn’t set this off!
    I understand the pity. I feel it every time I tell people my son has Down Syndrome. There is nothing for them to pity because he’s an amazing little man and I love him just as he is. But I feel it anyway. Part of it is probably real, and some, I might make up in my head, which doesn’t make it any less real in my opinion. I hope my comment wasn’t one that made you feel that. I just wanted you to feel supported and know that even strangers like me are wishing you guys well!

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    • Rachel Engel says:

      Of course not! People offer their condolences for the situation (like you!), and it’s so kind and thoughtful, it warns your heart, but just like you said, you feel the pity, whether it’s actually there, or not. When you hear of a child being diagnosed with cancer, you are filled with sorrow for those parents and their sweet little one; you can’t help it. You also grab your OWN little ones and breathe a sigh of relief that it’s not them. It’s just life. It’s how things work.

      Your comment did nothing but make me even more glad I write out my feelings. I’m touched by the kindness of those that don’t even know us.

      And your little man is perfect, just like you made him. Just like mine is. 🙂

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  3. Katherine says:

    We’ve had the pleasure of sharing our life for almost three years with our brave, strong and super sweet boy. His challenges have an “external view” so I’ve gotten used to long looks and wacky questions. And, yes, the looks of pity. Most are wrapped in love and concern. Until my boy smiles and laughs, then we all forget what we were worried about. 🙂

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