Moments…

4 Feb

It was dark, still only four in the morning, but I woke from the sound sleep I was in as soon as the bedroom door opened.

“Hey Maura, come on in.”

She crawled up the middle of the bed, curling up against me as Josh got her a pillow of her own. Her toes rubbed up and down my legs, as she’s always done. For the next couple of hours, we both tossed and turned, but then as everyone else in the house started to rise, she once again curled against me, her head on my shoulder, my arms around her.

It’s hard to imagine her anything else but a child in those moments.  The only difference between the Maura of that moment and the Maura of six years ago is how much more room she takes up in the bed.

Eleven years of this and I’m still not used to the fact that Maura is a person with disabilities.  I know it.  I see it.  I live it daily. Yet at the same time, it’s still a wonder to behold.  How did we get here?  When did she get so big?  Is this really happening?

There are times it is so real, her disabilities.   But other times, I look at her, and I can see the blurry edges of the girl she could have been.  The girl with the long legs and thick eyelashes and a hint of freckles, who knows who she is so well and is so confident about that.  She will pause and I can see the girl without the disabilities for one moment – and then that ghost is gone and Maura is back to being the Maura I know so well.

I no longer mourn the child I lost at fifteen months, when “developmental delays” came into our world. I don’t mourn the future that could have been, or have ever wished things different.  It’s just that every so often, my breath is taken away by this person I created, who can be such a child one moment, and so normal another.  For one moment, the outside world pauses, and I have that child who Maura truly is, a mish-mash of innocence and confidence, undefined by abilities or disabilities, who constantly astounds me with her own beautiful conundrums.

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6 Responses to “Moments…”

  1. Joy M Newcom February 4, 2015 at 1:48 pm #

    Beautiful. This. Yes.

  2. Danielle February 4, 2015 at 2:33 pm #

    Wonderfully said! I feel the same way. I know longer mourn the child or adult he should have been. However, as he grows closer to adulthood, I still wonder at how at times he can be so normal, but really he isn’t and never will be.

  3. Bright Side of Life February 4, 2015 at 2:40 pm #

    Lovely post to read. I get it, totally. I guess I am also at that stage…. I only have one worry left, only one.

  4. ainebmoloney February 4, 2015 at 3:38 pm #

    Phoebe. Aine teacher from grove nor here.moments is a great piece of writing.ill post it on irish special needs parents Facebook page.

    Sent from Samsung Mobile

  5. Donna February 5, 2015 at 4:23 am #

    Well said! I think you just echoed every parents thoughts that has a child with disabilities. This brought tears to my eyes. The “typical” moments with our daughter are so full of hope. Then there’s the “non-typical” moments that bring us back down to reality…a reality that is often demanding and difficult, but also full of love, from our little girl that has these wonderful, short breakthrough moments…filling our hearts with love and joy. 🙂

  6. Chris February 6, 2015 at 12:28 am #

    Have you ever seen this article? I think it perfectly explains all disabilities to the “lay” person.
    http://www.our-kids.org/Archives/Holland.html

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