Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Mortality

on July 23, 2013

I nodded off while sketching this out last night and accidentally published it. I unpublished it right away, but I know many saw it anyway. This is the final version.

I do not know what it is like to lose a child. Fortunately, I’ve only watched from the sidelines, observed as others have dealt with the death of their child.

But I’ve looked in the face of my son’s mortality more times than I care to admit, starting before he was even born.

It’s something that those on the “outside” are sometimes surprised to discover that us moms of kids with life-threatening conditions don’t actually discuss too much. It’s there, unspoken, with comments about surgery nerves. It’s there in support given to worried fellow parents when a child seems to be having a particularly hard time. But it rarely comes up plainly. We dont like to admit we think about it.

But yet it is always there. You always know your child is fighting for his very life.

So many times, I’ve heard, “but nobody knows the future. A perfectly healthy kid could die suddenly tomorrow.” Yeah. Not the same. Every parent knows this, but do you know many who really think about it? I mean, really think about it?

There’s something about facing your child’s mortality on a regular, ongoing basis that just changes you. Your fun moments are too often followed by “I hope we have many more like this.” Your plans for the future include “I’ll just be happy if he/she is alive to make the decision about college…”

It’s just always there. Sometimes it’s right there. Sometimes it’s further back. But it’s always there.

Not in any way similar to “my kid could get run over by a car tomorrow.” Because nobody ever really thinks that will happen to them. But parents of kids with life-threatening health issues know that it very well could happen to them. They’ve watched it happen to others with their child’s same condition. They’ve watched as kids they grew to care about pass away, and they’ve watched the parents they’ve come to know as they deal with the aftermath.

Unlike “regular” parents, these parents may have been listening to the radio when they suddenly think, “this is such a pretty song, it would be nice for my child’s funeral.” They might have thought about where they would bury their child, whether they would choose cremation. Not in a distant-future, do I want to buy plots for the kids when I buy my own, sense. In an “if my kid doesn’t make it through the night, how do I feel about the child area of Waveland Cemetery” sense.

That changes you, as a person. In good ways, and in bad ways. And you know I’m going to say that embracing both the good and the bad, the inspirational and the depressing, is a good thing. Don’t judge – just accept.

Facing my child’s mortality on an ongoing basis has changed me, and in ways that many people can’t even comprehend, in ways that I can’t fully articulate. And that’s ok.

(for the record, I want to cremate. I want to have a few memorial items made from the ashes, bury the rest at either Waveland, or near my parents in Storm Lake, or I’ve considered near his uncle in Storm Lake, but I don’t think there are any plots available. I want I’ll Fly Away from O Brother Where Art Thou, and It Is Well With My Soul sung by Ginny Owens.)

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3 responses to “Mortality

  1. Anonymous says:

    Thank you for posting this – it’s exactly how I have felt the past 2 1/2 years since my son was diagnosed with a fatal illness.

  2. Michelle says:

    Thank you for your vulnerability on this topic. Your honesty will help us to better support other moms and families.

  3. istuke says:

    So beautifully and honestly written, Sarah.

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