Disabilities: Removing the Dis and Focusing on Abilities

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My six year old nephew called me last summer. He had been looking through photos of his brother and cousin up at the mountain, noticed he wasn’t in the pictures and had something to say about that.

“Auntie A! Meeeeeeeee skiiiiiiii!!!”

I was cautiously optimistic to hear his request. We’d had him up on skis when he was 4 but he was more interested in eating snow than staying upright. When he was 5, we repeated our trip but when given the option, he chose a sled over skis. Maybe this would be the magical year!

Grant on skis, age 4
At age 4, he was more interested in eating snow than skiing

We’ve been practicing over the past few winters on plastic, slip-on skis to help him get use to the idea of staying upright with his feet strapped onto long boards. At times our quest felt futile. Without real edges or any surface for traction, the plastic skis slipped out from underneath him on the snow. His usually patient and easy going demeanor would give in to frustration. We’d put the skis away until the next time and repeat.

We Carry Our Own Equipment
Even at age 5, we carry our own skis

My nephew has Down Syndrome and that extra chromosome doesn’t do him any favors when it comes to learning a new sport. Muscle flaccidity, decreased motor skill, difficulty with coordination, challenges with verbal skills; it all comes with Trisomy 21. One specialist likened it to trying to function with your body in a sock. Simple things are difficult, like moving the tongue, holding a crayon, picking up a toothpick, using words, turning verbal instructions into actions.

We do all of those things anyway. We focus on our cans, not our can’ts. We use patience and repetition. We laugh a lot. We celebrate advances. We don’t get hung up on imperfection. We move forward, we move backwards, we try again, we don’t give up. This applies to every child, regardless of chromosome count. Some things are hard. We do them anyway.

He’s just six years old, he has an extra chromosome and New Year’s Eve, he made it up the chairlift and down his first run on skis, using his own strength and coordination to control his speed and stop.

And THAT is how we take the dis out of disability!

Focus on Abilities
Thumbs up! He’s officially a skier!

 

The Dreaded Treadmill

I am not an exercise enthusiast but as a nurse, I do have a special appreciation of the body and I deeply respect life.

I’ve worked in a hospital for over twenty years now and the majority of those years, I’ve been an emergency room nurse. I’ve watched the human spirit fight for life as the body runs out of energy to hold on. I’ve seen up close and personal the habits that rob life of it’s quality. I’ve seen illness steal the light from a life well lived.

There are many events we have no control over but as much as I despise scheduled exercise, oh how I love skiing and hiking and being outside! I enjoy being able to bend down to tie my own shoes. I appreciate being able to climb up on the counters to water my own plants. It brings me joy to be able to physically participate in a child’s life and run on the playground, swing on the swings and zip down the slide without having to stop to catch my breath. This is the good stuff.

From the Summit
Black Diamonds are a Girl’s Best Friend.

So I exercise.

I put on my Nikes and I fire up ol’ Mo, my aptly named treadmill, and I curse and I cry and I get it done. I quit at least 30 times an hour, but then I remember my “why” and I get my head back in the game and I keep going. I play mental games with myself. I do whatever it takes to get the job done.

Polar Bear 5K
My first ever 5K was done in snow boots and with this little man on my shoulders. It took 56 minutes but we did it!

I need to be able to perform solid chest compressions for at least 2 minutes straight without getting tired. (It sounds easier than it is.) I need to be able to downhill ski for 8 hours straight, keep up with my pre-teen mountain master nephews and still have the energy to make the hour drive home – and then do it again the next day. I need to be able to climb a haystack, lift a bale of hay, load it into a pick-up truck and then lift it again into a hay feeder. And sometimes, I need to be fast enough to make it to the gate before the bull. Well, that last one hasn’t happened yet, but if it ever does, I need to be ready!

That’s Some Bull

So I keep exercising, even though I despise it.

I challenged my 9 year old nephew to a 5K Turkey Trot Thanksgiving morning. He’s an athlete. We’ve walked a couple races in the past but he’s been chomping at the bit to run one for time. He’s too little to run a 5K alone, so I’ve been training and training HARD to be able to drop the reins and let the little guy give it all he’s got but still be able to keep up with him.

Polar Bear Run 2017

I’ve been using the Couch Potato to 5K app to coach me along. I’ve crossed the threshold from mostly walker to mostly runner as of late and I’m actually beginning to feel excited about the upcoming race – though, I have to confess, I’m even MORE excited that our mountain just announced an early lift opening the day after the race and that is my real reason for cardio conditioning – ski season.

Down Syndrome Fun Walk

I’m not fast, it’s not pretty and I’m not a natural – but I get it done because I believe the body is a tool and I have to keep it conditioned to perform the activities that I enjoy. It’s really that simple.

So wish me luck. The little guy has vowed, in playful jest, to “totally smoke me and leave me in the dust” next Thursday. Personally, I think I just might surprise him.

Polar Bear Rn
Single digits may have slowed us down for this race but we still finished.

These are iTune links to two of the apps I’ve used.  I like to mix things up so I’m always guessing what the next day will bring.  I believe they both offer Android versions as well and no – nobody is paying me to mention their product.

https://itunes.apple.com/us/app/5k-runner-couch-potato-to-5k/id439852091?mt=8

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https://itunes.apple.com/us/app/c25k-5k-trainer/id485971733?mt=8v

C25K

World Down Syndrome Day, 3/21

3/21 is Down Syndrome Day.  Down Syndrome, aka, Trisomy 21, meaning when those tiny gametes met to create a zygote — there was an extra chromosome 21 — and that little zygote grew up to be our adorable miracle: Grant.

So, he’s just like the rest of us, except he has an extra chromosome.  It can make some things harder for him, like speech and fine motor skills — but it also makes him pretty darn special; anyone who has ever been lucky enough to feel his hug knows exactly what I’m talking about.  He is patient, kind, loving and so stinking funny that he keeps us all giggling.  His connection with animals is infinitely deep, so much that it feels spiritual.  His tolerance of others is one I envy.  He teaches us new life lessons every single day and we are all better and wiser humans for it.

I’m so utterly humbled by and grateful for this little man that I can hardly go a day without seeing him.  He’s my nephew, my little buddy, my helper and my backseat co-pilot and I can’t imagine a life without him. ❤

Things My Nephew Taught Me

blogger-image-1096858430He was so tiny when he was born. His head would move around in his newborn hat. Swaddling blankets swallowed him among the folds. He was quiet and soft and precious. We knew he was different. We knew this kid was destined to be a part of our family. A mother with one ovary on birth control, a father recovering from stage 4 testicular cancer and an extra chromosome?! The statistics behind his existence are simply astronomical – and yet, he is ours today as much as we are his. Factor THAT mathematicians…

The fact Grant was different might had captured more attention but it was about the time the genetic testing was back that my siblings and I converged together to care for my father. My dad was diagnosed with terminal brain cancer with weeks, if not days left to live. Priorities fell into place. This great man needed his kids to be more than we’d ever imagined being. That was the first lesson. It didn’t matter this sweet baby was different or what the official tests said. Seeing him, holding him, just knowing him helped make us all a little bit stronger and it came at a time we needed it most.

He loved to be held and rocked and cuddled. He rarely cried. It didn’t matter who was holding him, this child has always radiated love and patience and kindness. His mom would say, “Watch out, he’s grabbing hair now,” and I’m sure her warnings were not without reason but most of the time, when he reached for hair, it was with a gentle brushing touch, as if he was amazed that something could ever be so soft and shiny.

I don’t know when he started hugging back but I can’t remember a time that he didn’t so it must have been from the beginning. The kid is an Ahhhh-MAZING hugger. This was the next lesson. He doesn’t hold back. He doesn’t cling to the past. He doesn’t fear the future. He doesn’t calculate the appropriate level of love he should emit, he simply loves and you feel it in his hugs. He grips you with both arms, pulls you in close and then melts into you until his little body is limp but his arms and legs have you completely wrapped. It’s pure. It’s genuine. It’s raw love. Why don’t we all hug like that? Why don’t we all love like that? Why do we complicate the simple things? Love is boundless. Why do we protect it, limit it and hide it? Jesus. Let that sh — stuff — flow!

His hugs changed me. His capacity for love changed me. His patience changed me. His simple goodness changed me. I’d been an empathetic caregiver, nurse even, for years but just being near him changed me into someone better. I worry less. I let go of little things more readily. I don’t care if I don’t fit in. It’s okay to be different. It’s okay to stand out. It’s okay to not hit landmarks and to have my own learning curve. I love more openly. I give more frequently. I invest less materialistically and much more spiritually. I don’t hold onto anger as long and have learned that hate is truly a toxic waste of energy.

Grant is full of love and joy and discovery. He has his own developmental timetable and schedule that is defined only by his own growth. I love it. We aren’t rushed to meet the next landmark or disappointed when he doesn’t, we just celebrate when he does. It’s a different way of looking at things and sooooo much more enjoyable. It makes us all just a little more present in the moment. I’m not going to lie, living in the present is the most altruistic feeling I’ve ever experienced. You want to feel connected to something bigger than yourself? Live in the present, if only for an instant, and you’ll understand what I’m saying right here.

He’s learning sign language because 90% of Down Syndrome kids have some sort of hearing impairment and his parents wanted to give him his best shot at keeping life long communication skills. (Did I mention his parent’s are incredible?) An afternoon with Grant is a bit like watching the visiting team call plays from the sideline, but I’ve also learned that most communication is non-verbal, non-sign, and all we have to really do is pay attention. That means putting down the “To Do” list, looking away from electronics and really making a human connection with each other. We have never needed words – or signs – to have an amazing day or communicate about what’s going on, though I have to admit, we are both working on each other’s language. He is amazingly patient with me and we laugh a lot about sounds and signs and what it all means when it’s mushed up together.

My nephew has a different perspective than mine. His is more true, untainted and real. He calls it like he sees it. He likes what he likes, which is nearly everything, but if he doesn’t like it, he doesn’t pretend to like it. There is no drama, no emotional screen play; he simply lugs it over his shoulder and moves on. Like pumpkins. One of my best days with him was on his class field trip to the pumpkin patch. It turns out, he’s not really a pumpkin fan. Instead of throwing a fit or ruining the fun of the day, he just threw his pumpkin somewhere behind him and kept pushing forward. Goats were at the pumpkin patch, too, and he loves goats. Wow, if we could all understand everything that just happened right there I think we’d live in a pretty amazing world, wouldn’t we?

A lifetime of experiences and the biggest life lessons have come from a 3 year old and I can promise you, I’ve never been happier.

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