21 March 2015

World Down Syndrome Awareness Day! 2015 Edition

Happy Down Syndrome Awareness Day! Today - 3/21 - is chosen because Down syndrome is diagnosed when 3 copies of the 21st chromosome are present. Please send this post along to anyone you'd think would benefit from hearing it. Today is all about awareness, so the more people who hear our message, the better.

A lot has changed since my email last year. Abigail gained a very typically developing little sis, Eleanor.



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I line up Eleanor's little Fisher Price animals on the coffee table and she picks them up with a beautiful radial grasp, one at a time, and deliberately drops them to the floor. Then, one tiny hand clutching the edge of the table, she squats down until her chubby little thighs are parallel to the floor. She reaches out, changing her center of gravity, picks up the little giraffe, and pops back up into a standing position. She very carefully lowers him back to the table and lets go, her fingers spread wide. He falls over and Eleanor looks up at me and whines in protest. A moment later, she's back at, this time going after an elephant.

This is one of those classic "children learn through play!" moments we're always hearing about. Except her muscles are "learning" too. I mean, she's squatting for fun. The last time I did squats it was in a Jillian Michael's DVD and it was the opposite of fun. Her little fingers, her wrists - all getting in wonderful little training sessions. And the thing about these here typically developing kids - they grow exponentially. On the first day she ever squatted, she only did so a handful of times. The very next day she was doing a dozen three times a day. By the end of the week, you'd think she'd been squatting her whole life.


Whenever Eleanor first hits a new milestone, I just kind of stare at her awestruck. Every time it's another moment to thank God for the incredible genius that is a healthy human body.

And every day that I see Abigail struggle through another milestone is another moment to thank God for the incredible fight and resilience He endowed in the human mind.

Abigail did squats at that same coffee table too, but her scenario was a little different. I kneeled behind her so she could use my legs as a bench, my thumbs were pressed into her leg above her knee, offering just enough pressure to encourage her to use her quadriceps being careful not to over grasp and shut them off. My first fingers were just below her knees and prevented her from simply falling from a standing position, and my last three fingers on her calf muscle, forcing them to stay above her ankles. I'd often have mere seconds to move to stabilize her feet and ankles and get back into position before she'd fully gone from squatting to standing. There was usually a pile of blocks on the floor and a bin on the table, or sometimes a few crackers that she would have to stand up in order to reach. There was lots of coaxing and cheering and desperate pleading.


It would make for a nice story if I said that Abigail pushed through the pain and persevered, emerging victorious, but the truth is that it was as difficult as it sounds. She always protested, yelled, flung herself backward, her head slamming into my nose. She tired easily and we'd have to rotate through squats, tall kneels, and balance work, like circuits at a gym, all with their own special handhold. When I say that Abigail learned to walk with blood, sweat, and tears, I do mean that literally. But either way, the story ends the same: she is victorious and has the most beautiful squat that she can hold for an impressively long time.

As frustrated as Abigail felt, she did push and she pushed hard. It took awesome therapists and regular practice at home to channel that fight into a beautiful squat that would make even Jillian Michaels proud.


The human body is an amazing, beautiful creation - impressive when compared to the fastest, slimmest, latest computer the way a bonfire lords over a tapered candle. The healthy baby seems to defy physics in how quickly and perfectly it develops. When faced with challenges, we see the sheer force of the human mind as it creates a way to make it's defying body do as asked. The observation of the our bodies and minds give me a deep appreciation for God's brilliance.

Everyone is born with a hand of cards that they must play. Usually it is not fair and sometimes it hurts, but when we set them down with grace, we display the beauty of the human person, a direct reflection of The One Who made us.


2 comments:

Amelia Bentrup said...

Love this post! This is just beautiful Jacqueline!

Katie Peterson (Maiden: Matarazzo Speca) said...

So touching! I am speechless. Thank you so much for sharing this with everyone.