The Child That Is, The Child That Isn't

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Recently, the mother of a special needs child wrote a post that went viral on the Internet. My post wasn’t triggered by the blog, but rather a follow-up comment by the author. She remarked that someone had told her she should mourn her daughter and get over it. (That’s my paraphrase.)

The Last LeafNow, her daughter didn’t die -- she was born with special needs, so to some, the word “mourn” may seem like an odd one. But when you have a child with special needs, you do mourn.

You do.

To some it may seem like self-pity. I don’t know–maybe it is. Some people might be tempted to judge me for saying what I’m going to say, but I’m only telling the truth. When, as a woman (because it’s much more difficult for a man) you decide to have a baby, plans start to form in your head. It’s silly, but you start thinking about what they might do or be, and what they might look like. Then, you find out it’s a girl. You start to think about weddings, and grandchildren.

Then at some point, all of that is over. Forever.

Never, ever think that I compare this to the actual grief of losing a child. It’s different. But it’s bad. It hurts. And what’s more, the mourning happens over and over as the years go by.

So-called experts talk about the grief process. They name the steps: denial (Maybe she’s just a little behind); anger (Why, God? What did we ever do to you? What did this helpless little baby every do?); bargaining (Whatever you want, God, okay? Kill me, whatever. Okay? OKAY?); depression (What now? How do I face this? Do I even want to try?); and acceptance (I’ll get back to you on this one).

But here’s the thing -- the grief process can’t be listed neatly into five little steps. It also implies that there is an end to grieving, and I don’t think there is. I don’t think the pain ever really goes away. It just changes, and hides, and then pops up unexpectedly over the years to hit you again. And again. And again.

Almost eleven years ago, there was a little girl who was supposed to be born. That little girl was going to blaze a trail. Super smart, independent, and ready for anything. She would get married some day and give her mommy a brood of grandchildren to fuss over.

That little girl was never born.

Instead, Evelyn was born. She’s blazing a trail in her own way, and I can’t imagine my life without her. But there are some things I had to let go of -- some things I had to mourn, and that I’m mourning still.

I’ve been through every one of those stages, and more than once. Even denial, which I’ve always thought I was immune to, has appeared over the years, usually in my obsessive quest for a diagnosis.

Most of my grief is tied in to the things I feel like she’ll miss out on. All of the nevers. She’ll never get married. Never have kids. Never go to college. Never have a boyfriend break her heart. Never, never, never. I’ve had to let each of those things go, one by one.

Sometimes, that little girl who I thought was going to be born all those years ago haunts me. She skips up and down the toy aisle at Christmas time. She’s out running with her brother on the soccer field. She talks incessantly to me like her brother does. She gets into shouting matches with him, and sings along to songs on the radio. She’s worrying about clothes, and starting to talk about boys. I catch glimpses of her sometimes, but when I turn to look at her, she’s already gone. I have to let her go again.

So you mourn. I think as the years go by, I will learn to get over all of that. Certainly I can “accept” it more now than before. But I’m a firm believer in what I said -- that pain never really goes away. You learn to live with it, and yes, even accept it. I think that’s what acceptance really means. Not that you’re okay with the way things are, but that you realize you can’t change it, and you learn to live with it.

Living with Evelyn is the easy part. She’s the joy of my life. She brings something to us that I can’t even explain. She doesn’t know or care about the things she’s “missing out” on (according to me). She gives me a good example of how to live -- live for the moment, forget about yesterday, and don’t worry about tomorrow. Mostly, forget about the things you can’t change.

I’m still working on that one.

 

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