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Sunday, August 7, 2016

Reflections on a Picture 3 Years Later

I remember when this picture was new. It was a favorite of mine.  Look at that smile.  Sheer joy! How can you not smile back just looking at it?  I remember posting it on Facebook.  I remember the comments of "She is such a happy baby" and "You are so lucky to see that happy smile each day." I remember that she was a really, truly happy baby, and I was really, truly lucky.

A few days after this picture was taken, our lives fell apart. Looking back, it was really a brief moment in time. 3 years. And it was nowhere near as painful and terrifying as I had envisioned. We survived. We are surviving. But at that time -- that very moment -- it was the end of the world.

A couple months after taking this picture, I stumbled upon it, and I almost deleted it.  Tears welled up in my eyes.  Anger crept into my body, filling my lungs and making it hard for me to breathe. Looking at that image instantly reminded me of what we once had -- a happy and healthy baby -- and it angered me that now her future was one giant unknown.  Looking at it reminded me that -- at one point -- she was "typically developing." Looking at it reminded me of a comfort, simplicity and peace I was once accustomed to but no longer knew, because nothing in my life was comfortable, simple or peaceful.

I almost hit "delete" more than once, but I could never bring myself to do it. My finger would linger over that key, prepared to strike the image from my computer screen and my memory forever, but then I would see that smile.  That mega-watt, light up a room, eyes filled with joy smile, and I couldn't. Because that happiness in that smile, that happiness was still there.  It was present in my daughter's face when her sister would lay next to her on the floor, playfully tickling her feet and sweetly telling her "sister secrets."  That happiness was present when I held my baby in my arms and rocked her to sleep as she snuggled softly into the safety of my arms.  It was present each time my eyes met hers, each time my ears heard her giggle, each time her hand grasped mine.

The comfort and simplicity and peace were gone, but among all of the stress and complications and conflict, the happiness still somehow managed to exist.

As time passes, I am able to tell our story with minimal tears and without my voice quivering.  I am able to find the beauty in the "typical" moments that I once took for granted.  I am able to say that grief does get easier.  Maybe it does not entirely go away, but it does become manageable.  It does slowly move from filling the entirety of your day to simply sitting in a corner of a room you rarely visit.

A few years after taking this picture -- 3 years and 5 months to be exact -- I stumbled upon it.  This time, tears did not fill my eyes.  Anger did not fill my heart.  I looked at that smile -- Sheer joy! Pure happiness! -- and I smiled too.


  1. My son has hypotonia. I come here to read about your daughters story. You give me hope. I know hypotonia is different for all kids but you make me hopeful for myself. Maybe I will be happier and not so scared soon.

    1. Thank you so much for your comment. There is a great FB page for Hypotonia. If you are not on it already, I would love to have you join us. Best wishes.

  2. ^this is what it's all about. Community, hope, team work. Thank you for keeping up with your writing and sharing, the world needs this, and YOU, and Cecilia <3

  3. I was referred to your blog yesterday, by your friend Shan. We found out yesterday our daughter, 8months, has hypotonia. I immediately read your stories which gave me hope. I know it will take time and therapy I just needed reassurance she will be ok :).
    What is the facebook page?