Wednesday, January 19, 2011

A glimpse of how far Polly has come

This morning as I was making beds and searching for matching socks in the upstairs abyss known as the playroom, I caught a glimpse out of the corner of my eye of a painting my mom had done of Polly in her walker.

Her little face smiles a radiance in the painting. Her chubby arms clutch the metal bars on each side of her body. I remember. She was so incredibly thrilled with herself in the little walker.

In the midst of a usual, chaotic morning I stopped for a moment and breathed in a deep breath of gratitude for Polina's progress. She walks so well now. She runs! She goes up and down our steep wooden staircase carefully. Sure, she holds tightly to the rail. Sure, she's had a few scary topples down the stairs. But she does it. She can do it.

A lot of kids with Down syndrome have hypotonia: low muscle tone. Polly was like a rag doll when she was born. Her arms and legs just hung; she was flimsy and bendy like a stretched out piece of Laffy Taffy. She's almost five years old now, and she still feels like a sack of potatoes when I pick her up.

Her gross motor skills have been the slowest to come. She started using sign language early. She had a fantastic pincer grasp. But her body did not want to move. Her legs had no interest in walking. Every new stage was work. She cried through three years of physical therapy two to three times a week.

Part of her strengthening regiment was using a stander. She was strapped into a large concoction of metal and leather straps for three hours a day. She needed to get used to standing upright. Her muscles needed conditioning. I broke up the time throughout the day; an hour first thing in the morning while she watched Signing Times, another hour later in the day during speech therapy and an hour at night before bed while her sisters read her books and danced around her stander keeping her entertained.

Her desire to walk finally came once we acquired a child sized walker. After she got the hang of it, we'd slowly walk down to the edge of the corner of the block. A few steps forward in the walker. Stop. Look around. Mumble a few unintelligible words. Keep going. The length of our block took her about forty minutes with her walker. She tired easily. She'd almost always start to cry. We took breaks. And then we kept going.

That's how it was for me, too, by the way. I tired easily trying to coax Polly into walking. Thinking about it, I almost always started to cry. I kneaded the crap out of the notion that she may never walk.

But she did. It took a long time. She was almost three years old before she really started taking steps on her own.

Now, most days, I have to catch her to help her put on a pair of socks. After a quick kiss she runs away from me, laughing and luring me into a game of tag.

I am thankful for that glimpse this morning. She's come so far. I needed to remember all the physical therapy, the stander, the walker. Not even a stroke, temporary paralysis and Moyamoya disease have slowed her down.

I needed the reminder of how far we've come. Parenting a child with Down syndrome can be heart wrenching and exhausting. It also can be magical. It gives you a deeper appreciation for little things. It can make you feeling like cheering for making it to the end of the block.

It feels good.


  1. Oh, she's a cutie! I'd love to see the painting your mom did, too!

  2. Beautiful! Thank you so much for sharing this glimpse. Mason is our 4th child, and early on I realized that one of the unexpected blessings that accompanies Down syndrome is it's capacity to turn ordinary into celebratory.
    And as a fellow writer, I loved the idea of kneading a notion. I have kneaded the crap out of a few notions myself. ;-)

  3. I had no idea the struggles it take for blessings like Polly to do the things we all take for granted in our daily lives. It brought tears to my eyes as I can see the love and devotion you have for your daughter in your words. What a wonderful blessing you are to her and from the sounds of it, she is to you!

  4. Thanks for offering this insight into your gratitude.

  5. Love it! That is the kind of thing that must really give you new energy to keep it all up.


  6. What an amazing and cute little girl!!

  7. I am crying reading this post! I do believe that may be the cutest child I have ever seen in my life! - Amy


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