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Trying to Remember

October 21, 2014

Tears, idle tears, I know not what they mean,
Tears from the depths of some divine despair
Rise in the heart, and gather to the eyes,
In looking on the happy autumn fields,
And thinking of the days that are no more.
Alfred Tennyson

I’m trying to remember what it was like… Trying not to let my heart become overwhelmed with grief and jealousy for what never was…… Trying to just be…. what?…… happy? Trying so hard to like the tongue in cheek boastful complaints about how someone’s baby is just so mobile, whatever will they do? Or, “oh he just won’t stop talking….”. Yes, you poor dear….. I know the intent is harmless….

I know I must have done some of the same when my oldest started moving around and talking…I must have…. I know…. But I forget…. Lost in a sudden swirling sea if grief that I thought I had gotten past….  the waves come crashing back over me…. Each little comment of comradery, each little ‘mine too’ reminds me of how few ‘mine too’ we ever get on this path…..

I remember waiting and waiting for language with Joyce….. I remember waiting for words while cousins and friends parents proudly exclaimed at how much their little ones were talking….. I remember waiting with a twinge of jealousy, but the words, they came…. eventually they came…. language came, in a series of scripts, but it came… and I was grateful, even though I didn’t really know……

And now with Mary?

Oh listen to him babble! She’s talking already! Oh what a talker!  I try to be celebratory for my friends…. I try to hit the “like” button on facebook even when it makes my heart bleed…. But some days it is just too much. There is no familiarity of a shared journey here. Not any more. There is no celebration in my heart because it is overwhelmed with grief again. This is why, if I am honest, this is why I am terrified to ever have another baby. Not because I am afraid they will be autistic like my other children. Quite the opposite- because I am afraid they will be “normal.” I am afraid that I won’t want to celebrate a new child’s milestones when they are whizzing by my other children. Even now, watching the younger children play at pick up time at school, watching them run and talk and explore…. I get so angry. Like they are flaunting something…

This is a lonely journey. Isolating. We don’t really fit anywhere now…. Wouldn’t it be nice if all of my children could go to the same school? Little comments sting…. a mother complaining about having all four of her children at a private school at the same time, and how much the tuition is….. If only I had that choice! If only I could put them all in the same community….

There are rewards here that those other parents will never appreciate. I know that.  Things that they will miss out on with their perfectly normal babbling crawling walking talking kids…. There are many… so many…. I keep telling myself that, clinging to it, like somehow I know a secret that they will never discover….

I thought I was past this. I thought I was so much bigger than all the jealousy…. But I realize now that I’m not. I probably will never be. Because while I’m trying to remember what it’s like to watch my first born climb and run and talk for the first time, that memory feels like a different  lifetime…. and then I feel worse, like somehow I have stolen something from him by being so wrapped up in what came later…. So I am trying to remember “complaining” about how agile he was, about how much he talked, but then I am seeing all the little clues I missed, like how he was talking and how he was playing….. all the times I failed him by pushing him to do things that I didn’t realize he just couldn’t do…. the t-ball, the loud engines (ironic I know ), playing with new toys, playing with other kids, making friends…  And it comes back to me again, that I have no idea what “normal” even looks like. And again, that loneliness creeps back in…

And then, I feel that by letting myself feel a little jealous of someone else, I am somehow betraying Mary, somehow saying I wish she was different. And that is just not true.  I would never  I would never trade her for a million babbling talking running energetic normal babies…. But I am sad for how hard she has to work in this world that simply wasn’t designed for her. What I’ve always wanted for her was community. While I do believe that we have found that for her at her current school, each time a friend has a new baby and then starts posting updates on facebook or just talking about all their milestones… Each time it reminds me of how very different our journey is, and how hard it will be for my sweet girl to find that elusive community of people who share a similar journey…. And then somehow, I just can’t hit the “like” button…..

My children are my biggest hope, and my most precious gifts. They are divinely created perfection. I write this here because there are days when all parents need a place to be able to say, screw it- I don’t care that little Sally got some great solo violinist spot. I don’t always have to rejoice at someone else’s accomplishments. Some days it’s ok to just say it’s hard. Because it is. Because last night my sweet girl screamed in agony and anger and frustration until she finally fell asleep in my arms. My husband and I took turns holding her, comforting her, neither of us having any idea what was wrong, because even though she is five years old, she still has no way to tell us… So no, I can’t hit the like button when your perfect little peanut is “talking too much” after a night like last night. Not because I would want to change my sweet girl, but because I am so frustrated at my own inability to make this world just a little easier for her.  Because as incredibly beautiful as this path is, there are days when it is just hard, and saying that out loud doesn’t mean that we love them any less. It just means that some days life is hard.


(Image is of Mary quietly sitting on our front porch swing, enjoying a summer storm.

One of those gifts that without her I wouldn’t have appreciated in the way that I do now. )








11 Comments leave one →
  1. October 22, 2014 2:12 am

    This is a very touching post. I can feel your sadness and grief, yet above it all, your love and joy over the gifts that has been given to you. “Someone very special” knew you were that strong and extra special mom that could do it. And this is truly from my heart so it must be true.

  2. October 23, 2014 3:56 am

    You are right. Well said.

    Some days it is just hard, with seemingly no reason we can surmise.

    The majority won’t understand this kind of “hard”, as their “hard” with their neuro-typical kiddo(s) is simply trivial if we are honest. I have both kinds of kids, so I can be honest.

    I am much more careful about what I broadcast these days, with your sentiments as a guideline in general.

    • October 23, 2014 10:11 am

      Thank you. This means a lot. I think we do have to be careful about how we express the hard- I try to remember that mynown chikdren may read this someday. At the same time, I think it would be dishonest in some way for it all to be rainbows and unicorns all the time. It’s the hard, after all, that lets us truly appreciate the beauty. Thank you.

  3. October 31, 2014 1:19 am

    Dear Erin,

    You couldn’t have put it any better.
    The ache in our hearts for our children’s grief or struggle is something we shouldn’t feel guilty about. Unfortunately we do.

  4. Erin permalink
    November 6, 2014 2:04 am


  5. November 11, 2014 4:29 pm

    I want to say something. Anything that will help. But there’s a lump in my throat.
    I get it. I could’ve written every single word of this. Every. Single. One. It is hard sometimes. Just as it is beautiful sometimes.

    • November 11, 2014 5:03 pm

      “I get it.” That says so much. Thank you. xoxo

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