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.



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8 Comments on "Mourning in Never-land"

  1. April
    12/01/2012 at 1:03 pm Permalink

    Hi! I’m blog hopping today and I am following your blog. Please stop by and say hi. I hope you are having a great week.

    A Mommy’s Blog Design Studio
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  2. Jo
    12/01/2012 at 3:56 pm Permalink

    I totally understand where you’re coming from. You love and adore your daughter just as she is; you cannot imagine life without her. But with her birth came the death of certain dreams you had for her. You lost the daughter you thought you had, and although you were blessed with a different kind of daughter (I like to think that God entrusted you with her), there is some mourning over things you and she might never experience.


  3. Melissa
    12/01/2012 at 6:31 pm Permalink

    As always, your posts are poignant and honest. I do imagine you are quite right that the mourning process is one that will continue through the different stages of life. I don’t think anyone could ever call it self-pity. My prayer for you is that one day you get a definitive diagnosis. I can only guess that having a name for what is happening would help make sense of it. But I hope I’m not putting my foot in my mouth. There are so many things in life you can only understand through personal experience. I can tell you that I love you, I care, and I’m here for you. I think you are doing amazing.

  4. Janice
    12/01/2012 at 10:01 pm Permalink

    I don’t know why having a diagnosis means so much, because ultimately, it doesn’t really make a difference. It’s not like we can find out what she has and there will be some magic pill to fix it.

    Still, one wonders. Usually, if it has a name, you have at least some general understanding of the cause. I think that’s the root of my desire. The “why.” You know, to be able to look at it and say, “Oh, well, this gene mutated,” or something like that.

    Thanks for your kind words, and of course you didn’t put your foot in your mouth. You are absolutely right.

  5. Amber
    18/01/2012 at 4:41 am Permalink

    Wow…I can relate in SO many ways. I KNOW that quest for a diagnosis well and we got ours. It’s so rare, there are only 20 known cases in the US and nearly 100 worldwide. *not super helpful* It didn’t help explain anything to doctors, teachers, friends, family…watchful strangers. I will say…thanks to the internet…we are able to connect with the other families of this rare chromosome deletion and what may or may not come with it.
    Thank you for beautifully putting what so many of us feel, into words.

  6. Jzabela @ TMAOM
    20/01/2012 at 2:31 am Permalink

    wow, a really beautifully written post. i totally know what you’re getting at, and i think you have every right to mourn those things. we as mothers think light years ahead as soon as that egg and sperm unite. we are built that way and when we realize that things will not be as we hoped..our world can feel like its crashing down. i do hope you find that ‘why’, but even if you don’t, remember that you were given this life because you are strong enough to live it. 🙂

  7. Suzanne
    29/01/2012 at 10:47 am Permalink


    Still learning how to comment from Blogher (which resulted in a spectacular fail) so commenting directly onto your blog. Anyway…

    I can so relate to your post. My daughter is 19 and is classified as “intellectually disabled.” Upon delivery it was discovered that she had a host of problems without explanation or reason. Long story short – we had no diagnosis but told she probably wouldn’t live a year, if that. (Gulp!) Over time it became obvious that she would not die, but would forever be “delayed.”

    So yes, I did mourn all that I had hoped she would be, accomplish, master. With time, she surpassed many of the limitations the medical world had placed on her – and THRIVED.

    After having two boys I longed for a girl so we could go on mother-daughter shopping trips, going out to lunch, going to the Prom, watching her play sports, etc. What I have learned is that we can do many of these things – they have just been modified. We did shop for a Prom dress (she went with her class, complete with limousine, dinner, and corsage) and we cheer her on at Special Olympics.

    I think I have gotten over the “what might have beens” and replaced them with “what will Kinsey accomplish next.” Kinsey never ceases to amaze me, and it sounds as if your sweet Evelyn does as well.

    You sound like a pretty amazing mother to me. Keep the faith sister!

  8. Janice
    29/01/2012 at 8:15 pm Permalink

    I’m really, really glad to have found your blog. To find someone else who doesn’t have a diagnosis is really something.

    Thanks for commenting, and visiting my blog.

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