(Please Note: It’s entirely possible that I’ve written about this event in another post. If I did and you’ve already read it, mea culpa. Just pretend you’re as senile as I am and this will all be brand new! I promise!)
It was one of those days Agatha Christie would have described as blustery. It was the autumn before my sons second birthday. We’d only had a couple of months to get used to the idea that the reason he wasn’t walking yet, and that his left arm was bent and his left hand clenched was because he had Cerebral Palsy. My two other daughters were five and nine. My adopted daughter hadn’t bounced into my life yet.
Too cold, windy and rainy to play outdoors, the girls were taking turns reading stories to their baby brother on the heavily carpeted living room floor. Dad was in his comfy chair, reading and I was stretched out on the sofa either knitting or embroidering. Even the dog was sharing the family afternoon indoors, curled up in front of the fireplace and occasionally snoring.
We probably had John Denver on the stereo, playing softly in the background. This was before the days when we had the television in the living room. One TV set, placed strategically in the kitchen/family room where one could make a mess with food and not be scolded for staining furniture or carpets, and lent the comfortable living room to entertaining company or just enjoying our own.
All our other rooms were a wreck. School projects, craft and sewing projects, sports gear, piles of books daring us to make more shelves, never-ending laundry for an active family of five, and a half-built airplane spilled over into every corner of the place we called home. But we did make admirable strides at keeping the living room clutter free. Well, most of the time, anyway.
On this particular blustery day, with all of us tucked into the room with the nice, warm fire, my husband and I watched in awe as our daughters took up the unasked, unsolicited challenge of teaching their brother something new.
He had this toy. I’m thinking it was made by Fisher Price, but it could have been another company. It was a talking camera. It was bright blue and orange and neon green, shaped like an old box Brownie and was just about the same size. Small enough for a child to play with, but my son had motor skill issues, exacerbated by a bent left arm and accompanying clenched fist.
In order for the camera to talk, one needed to hold onto the camera with one hand, pull the string taut with the other, let go of the string and push the button. To get the full experience, one pulled the string taut, held the camera up to look through the fake viewfinder, then pushed the button as if one were actually taking a photo. On the push of the button, the string recoiled and the voice box said something clever like “Watch the birdie!” or “Say cheeeese!”
My son was on his knees which caused his lower legs to fan out to the sides. This allowed him to sit up straight. (He rather looked like a frog but it was an endearing quirk.) My oldest daughter was behind him, practically doing the splits to accommodate her brother’s position without interfering with his independent stance. She would guide his arms by placing hers on the outside of his while he learned the sequence. My middle daughter very carefully and methodically showed her brother each step, pausing for him to catch up to her. The two girls together, came up with a way he could balance the camera without needing to hold it in both hands. Then they worked out how to pull the string taut and have it free to recoil without getting tangled in either limbs or clothing.
The finished sequence went something like this: My son would place the camera, lens side down on the floor between his knees and spin it 180 degrees. This put the pull string by his good hand. He then put his left forearm firmly on the camera to secure it (leaning in with his body weight) while with his right hand, he pulled the string toward his torso and around his back until it ‘caught’. He would then let go of the camera, sit up, turn it 180 degrees back, lift it up, flipping it over to look through the viewfinder. Holding the camera up to his nose he’d tell you to hold still and smile! Then he’d place the camera back on the floor between his knees and toss the string away. With the string now stretched out in front of him, he’d click the button, the string would recoil without snagging on anything, and he would listen to the random saying.
When he finally performed the entire sequence without assistance from his assistants, the five of us burst into applause and laughter. Loads of attaboys, pats on backs, kisses on foreheads and shouts of “hooray!” woke up the dog and even he jumped into the giggling pile of bodies on the floor.
It took almost three hours.
Beyond getting drinks and snacks and at least once taking my son to the bathroom, neither my husband nor I interfered with the task. Clearly they were all three on a mission. The girls were patient, kind, thoughtful and creative. My son was determined, listened and took instruction without complaint. All good traits in anyone but these were babies. 20 months, 5 years and 9 years old. I remember thinking they were building a bridge between them that could last a lifetime.
And like any good parent, I held this afternoon’s events over their heads and wielded it each time they had a quarrel (hey remember that time you guys worked together for over three hours and nobody whined not once!? Do it again please!), or threatened to tell a boyfriend when one was too busy to set the table, or – you get the picture. I consider myself a good parent. But bribery and blackmail were never beneath me
My son was five years old when he took his first unaided step. When each of my girls took their first steps we all clapped and giggled and hugged and praised them for their accomplishments. When my son took his first steps we all sobbed with joy. Sobbed! All of us. Family, friends, neighbours, grocery clerks, everyone who even remotely knew my son welled up with tears when they saw him walking for the first time. It was the ray of hope after a long struggle. A glimmer, that the future might not be so bleak for him after all. It was the culmination of a lot of work and the beginning of a lot more.
I share this with you because in Andrea Friedman’s interview, posted on Progressive Alaska, she mentions more than once that being challenged (mentally and/or physically) is hard work. That her parents gave her a normal life – but it didn’t just happen – for special needs kids, normal doesn’t just happen. It is hard work. Learning is hard work when you not only have to get your brain wrapped around an idea, but you also have to tell each muscle in your body how to do its job. And keep after it without giving up until the sequence is hard-coded into your brain. Andrea speaks with great clarity, but she didn’t always. She worked hard for each and every aspect of her normal life.
And this is a common theme we’re all of us out here in the blogosphere trying with tireless pertinacity to convey to others: Trig Palin isn’t getting his rightful chance at a normal life. His mother talks a good talk about how precious life is, and about how DS babies deserve a chance at life just like anyone else – but then falls short of the hard work necessary to make even her own son’s life better.
So who is she helping? This woman who claims to have chosen life over abortion – what example is she setting for other parents to follow?
Sarah Palin claims to be an advocate of right-to-life because Trig Palin has DS and then thumbs her nose at the very process that’s necessary to give Trig the best possible head start. It’s equal to saving a boatload of refugees from a bad storm, only to sell them into slavery once you hit land.
It isn’t all about the saving, Sarah. It’s about what happens to them after, as well.
To comment on this post, please scroll up to the title: It Takes a Whole village to Raise a Child (Part 3) anc click on the word comments just beneath. Thanks, OzMud