She matters

Cass by window1-1
I was pregnant when they handed me a high school diploma and wished me all the best.  I didn’t go away to college.  I have no degree.  The whole of my adult life has been spent rocking babies and packing lunches and answering to mom.  Mommy.  Mama.  It’s all I know.

Who I am is tangled up in the four of them–an identity so deeply rooted that sometimes I forget where I end and they begin.  And so I like to think that this one was an extra special gift from above.  The other three–they will grow and go and see and do.  This one, too, has a whole life ahead but not-so-secretly I hope that she doesn’t go.  I hope she wants to stay with me for always.

I took her to a new doctor yesterday and as she sat on that padded bench he turned to me and spoke as if she wasn’t there.  All in the same string of words he used vulnerable and pubertyDepo-Provera and catastrophe.

His intentions were well and good but the words came crashing down.

We go along in our routine and eventually the moments run together and–looking back–it’s like a watercolor where the joy bleeds into the pain and it all looks seamless from a distance.  There was this one minute when I stood staring at her–tubes taped and wires running–in the NICU and this doctor swooped past and asked if she was a Downsie.  People forget the weight of their words.  But time soothed and years flew by and now she is who she is and Down syndrome doesn’t sting.  Most days it doesn’t.  The blink of an eye and here we are and it’s just another doctor with wrecking ball words that are the same but different.

She flipped the pages of a book on that padded bench and said, to nobody in particular, stop talking about me.

She didn’t mean it.  She actually loves to be talked about.  She loves to hear her name brought up.  But maybe just not in such close proximity to catastrophe.  What I think she may have meant to say is that I am here.  I am listening to the words you say.  I matter.

I think I failed her in that moment.  But even now, I don’t know which words would have been the right ones.  Fourteen years in and still there’s a learning curve.

I won’t be seeing that doctor again.  Not because he was wrong or callous but because not taking her back there is my way of showing that I hear her.  That I am listening.  And that, yes–heavens yes–

Cass by window-1

she matters.

11 Replies to “She matters”

  1. I inhaled sharply just reading those words. What an idiot. I have little time for people who don’t treat others as equal – children, elderly, differently abled, or whatever the reason may be…it’s just not respectable conduct.

    Good for you mama. She most definitely matters.

  2. I am in tears…hell yes she matters…more than that damn doctor will EVER know…

  3. I am a long time follower, although I have never commented. Your words always touch my heart, but today they took my breath away. I admire you for so many things, but mainly because you make me think, and challenge me to be a better Mama. You make me pause. You make me yearn to be aware, and present, and vulnerable with my daughter. This Mom thing is hard, and some days it’s easy to focus on the tasks at hand, and rush rush rush, when all I should be doing is listening, and feeling, and memorizing every moment, because it’s flying by so.so.fast. God bless you and your precious family. Your sweet girl is beautiful and perfect and of course, she MATTERS.

    1. I can’t remember the last time I read a blog comment like this one, Heather. You cannot know how much it means to me that you shared this today. Thank you so much.

  4. I have a down syndrome brother, and my mom has also been through similar experiences. Although these times tear at such a vulnerable part of you, they show how strong moms like you are. Did you see this movie that was made for World Down Syndrome Day on March 21? It’s beautiful.

  5. I absolutely loved this. I’ve had similar experiences, when a doctor said something cutting right in front of my oldest son about his physical appearance…I don’t get that. This just made my heart feel all sweet inside. And that picture, with the sun bathing her in stripes, I just loved that too. You guys are awesome.

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