Mourning in Never-land

Recently, the mother of a special needs child wrote a post that went viral on the Internet.  This 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.)

Now, 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.  This 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.

 

 

The White Horse Poops, Too

     There seems to be an awful lot of pressure on people nowadays to find the “perfect” relationship. I always get a kick out of those Match.com and Eharmony commercials. Don’t get me wrong–I’m sure some people find wonderful companions that way. My issue is that people spend an awful lot of energy looking for that “perfect” person.

     There are reams of books and articles about how to make a relationship work, how to find that special someone, how to put the spark back in your marriage, you name it. What I think everyone needs is a reality check. Listen up, teenage girls! That gorgeous, wonderful, super-hot guy that you’re screaming and crying for? He throws his clothes on the floor and pees on the toilet seat just like all the rest of them.

     I think that’s the problem (not peeing on the toilet seat, although that’s certainly a problem)–we don’t have any perspective. We think that our relationship should be perfect, but here’s the crux–no relationship is perfect, ever. We keep expecting perfection, and we keep getting let down.  Even the relationship between a mother and her child–the most natural, instinctive relationship there is–is often rife with stress and aggravation. So how can anyone expect a relationship with their partner to ever be anything other than challenging? A relationship is work, folks. Hard work. Something else–that person you think you’re attracted to that seems so much better than the person you’re with? They have a whole laundry list of their own little quirks, too.

     I’m not so old that I don’t remember what that first stage of infatuation was like. It’s always like that, for everyone, and it always fades into reality. The knight on the white horse from the fairy tale may come riding up to sweep you off your feet, but when you get home with him, you’ve got to fix his dinner and he’s got to go clean out the white horse’s stall in the barn.  Maybe that’s why the fairy tale always ended with “They lived happily ever after.” I guess “Cinderella changed into her work clothes and started a load of laundry while the Prince cleaned out the barn”  just doesn’t have the same ring.

     Instead of trying to make our partners perfect (they won’t ever be, by the way) maybe we should focus our energy on lowering our expectations. No, sorry, just kidding. Maybe we should focus our energy on making our relationships better. It’s mostly the little stuff I think, like NOT throwing our clothes on the floor or peeing on the toilet seat (I’m just generalizing, I’m not implying anyone actually does this!)  So give up on perfection (unless you’re me, of course) and go start that laundry. I’ll be in the barn.

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