Living with Cerebral Palsy Facts

His name was Reuben and his voice shook more than his hands did.

My best friend had called earlier that night and asked if she could bring her new friend over to meet me. He wasn't what I expected.

I had never met a person with Cerebral Palsy before. My interactions with disabled people were limited to so walking past the special needs class and staring at the kids like they were animals on display at the zoo. That girl who had spina bifida and a pimped out motorized wheelchair? I never even attempted to get to know her.

Disabled people made me very uncomfortable. I was a healthy, ignorant teenager who suddenly had a visibly disabled kid standing in her living room, cracking jokes.

Reuben wasn't at my house for very long but in that period of time I learned a very valuable lesson. One that had eluded me over the years. Disabled people are people too. It was a lesson I've carried with me ever since. Reuben's laugh and his shaky hands were branded into my memory.

As it turned out, Reuben was a portent to my future, even if I didn't know it.

When my husband and I decided to adopt a child we had to decide fairly early on in the process what type of child we wanted to adopt. We knew we wanted to adopt a child with disabilities but we had to examine what type of disabilities we thought we could handle.

We sat down at a table in an old government office building, the carpet brown and faintly smelling of mildew and we stared at the pink piece of paper listing what seemed like every known disability a human being could have.

We started checking off boxes. Yes to blindness, deafness and deformities. HIV, organ failure? No thanks. Developmental disabilities, yes please. The list went from a vague list of possibilities and narrowed to a specific set of diagnoses. ADHD? Downs? FAS? And then there was the box next to Cerebral Palsy.

Every time my husband and I moved down the list, we would stop and discuss the possibilities as we best understood them and what bringing home a child with that health issue would mean to us and to our family.

But when we got to the Cerebral Palsy box all I could think of was Reuben and his shaky laugh and red leather jacket. Cerebral Palsy, check. We checked so many boxes that when we handed in that form with our application the social worker looked at it and asked us if we we had made a mistake.

Nope. We're just a bit insane, my husband joked. It was easy to check off most of the boxes. The chances of actually bringing home a child with most of those issues? Well, let's just say I have a better chance of becoming rich and famous.

And then Jumby found us. Or rather, his social worker did. We were matched with his profile and all of his afflictions. Rather like online dating only less romantic and with more pharmaceuticals involved.

I've written about Jumby and his health issues. His Cerebral Palsy, his blindness, deafness, his developmental delays. I've written about his incredible spark and the joy he brings to us, each day with every smile.

But what I haven't written about a lot is what it means to parent a child like him. When he has more diagnoses than he does letters in his name. I've not gone on at any great length about how hard it can sometimes be, or how frustrating, because really, parenting any child regardless of health can be a head-banging frustrating job.

So I'll whisper here, or sigh there, instead of stating plainly that sometimes getting the services my son needs is overwhelming and makes me wonder if I bit off more than I could chew.

I don't write about how I have to go into the school at the start of the new year to meet the teacher assigned to my son and try to find the words to inspire them into wanting to include my son in their classroom. How this year I need to find out why the special needs coordinator for the entire elementary school happens to also be a grade three teacher and yet Jumbster was put into a grade three class with a new, inexperienced teacher.

I don't write about how my son hasn't gained a single entire pound in over a year. How at almost nine years old he vacillates between 36 and 37 pounds and how we play the piano off his boney little ribs.

I don't write about the fact his ligaments are so tight that every time I change his clothes I worry I am about to break his limbs and sometimes, it takes two people to pry his legs apart for a diaper change.

And I certainly don't write about my fears for his future, if he even has one. How long will he live for and how will I survive burying another child? Where will he go, who will take care of him if something happens to me? Who is going to see past his many burdens to the awesome that resides within him?

I don't write about those things even though each of them plays a large part in every single day I live with my son. I chose to use my voice to remind everyone that life is more than the hardships it's composed of. Jumby's life is bigger than his diagnoses.

The joy my son has and brings others erodes the immovable overwhelming realities his life often entails.

Living with Cerebral Palsy isn't a magical awesome thing. Its just life. A twisted, slower, tighter life than most, but then life's magic doesn't come from health.

That magic comes from love, acceptance and understanding. All of which my son has in spades. And thanks to him, and even Reuben, so do I.

Today is the very first World Cerebral Palsy day.  There are 17 million people around the world with cerebral palsy.  350 million more people are closely connected to a child or adult with CP.

I don't claim to speak for any of those people. I'm simply speaking for myself. For my son. There are many facts about Cerebral Palsy I want the world to know. But the most important one I want everyone to know is how grateful I am I wasn't too scared to check off the box that says CP.

Thank you Reuben.

*****

For more information about World Cerebral Palsy day and to get involved in making the world a better place for people with CP? Go here.

Want to challenge yourself and others to walk, run or roll your way to raising awareness for Cerebral Palsy? Go here.

Want to learn more about Cerebral Palsy itself? Go here.

Want to see funny pictures of dogs being shamed for their naughtiness? Go here.

Not a dog lover? I've got cat pictures too.

Happy World Cerebral Palsy Day people.

Junior

Summer vacation is officially over as of 7:55 am this morning. Let the education games begin. *May the odds be ever in your favour.* (Can you tell I just watched The Hunger Games? The best part was when it ended. Oh yes, I went there. I'll stick with Lord of the Flies and Piggy for my child on child violence, thank you very much.)

My daughter is a junior in high school, her brother a sophomore. I still remember my first day of school as a junior. I thought I was all fancy in my new shoes and my stiff new jeans and I was making eyes at the senior boy at the back of the bus with big blue eyes.

I spent the entire bus ride pretending I wasn't flirting with him and every time we made eye contact I'd blush and look away. When the bus finally pulled in front of the high school, I had concocted a plan to introduce myself to him. I was going to get off the bus before him, pretend to tie my shoelaces and then pop up in front of him when he got off the bus, thereby forcing a hello.

It was a fabulous plan. It may have worked too. I'll never know. What happened instead was I fell OUT OF THE BUS. Some kid behind me, in their eagerness to get to class, shoved me and I lost my balance because my backpack was crammed full with new school supplies. I face planted into the sidewalk, my nose started to bleed and everyone laughed. Including the cute blue eyed boy on the bus.

He never even stopped to offer me a hand. He just avoided eye contact and kept on walking. I scuffed my new shoes, bruised my ego and wiped the blood off my nose. WELCOME TO YOUR JUNIOR YEAR TANIS. The bell hadn't even rang yet.

Sadly, the first day of class on my senior year was EVEN worse, but that's a story that can keep till next year.

Here's hoping my tribe does a little better on their first day.

To celebrate the occasion, I did what I've done every year for the past 12 first days of school I've had with my kids. I've lined them up and forced them to smile.

Nothing says "Summer is over, get your arses back to class," like me shoving a camera in their faces and telling them to say cheese. Only after barking at them to hurry up and for the love of God, no a can of Coke and a granola bar does not consist a healthy lunch no matter how many times you ask.

This morning was particularly disorganized and if it's a harbinger of school mornings to come, well I am in for a world of trouble.

First, no one wanted to stand for the picture. Because apparently "traditions are pointless and have no meaning."

I may have snarled. And put the fear of death into them at the same time. I don't know. It's all rather fuzzy. I hadn't had my morning coffee yet.

Jumby wasn't quite sure what was going on.

Envision me standing there, with my robe gaping open, holding my camera and screaming out "OW" trying to get my youngest son to smile. (The Jumbster is a bit of a sadist and will routinely smile whenever he hears someone say 'ow.')

Meanwhile Fric keeps telling Frac that he's holding Jumby wrong and he is slipping.

I'm standing there clucking like a chicken, trying to get the Jumbster to look forward when all of a sudden a noise comes from between the kids.

It didn't sound good.

That right there is documented evidence of how two teenaged children react when they realize their little brother just pooped and the only thing between them and 'it' is a diaper and some Old Navy Skinny jeans.

Welcome to the first day of school kids.

Eventually I managed to get a decent(ish) picture. It only required a diaper change, a few threats and a bribe.

I tried taking a few other pictures, you know, just to really push my luck and ensure my kids would have to run for the bus, but once someone busted out with the Zoolander imitation I had officially lost control of the situation.

All of that and we officially missed the bus on the first day of school.

It's going to be a banner year, yo.

Welcome to the 2012-13 school year kids. May your grades be good, your lunches not forgotten and your homework easy. And may your mother not lose her mind along the way.

 *Post Edit*

I want it noted, for the record, that I've actually read The Hunger Games books. And I loathed them. In fact, I loathed the books more than I loathed the movie. Mr. Lady sums up why I hated the Hunger Games books more eloquently than I ever could. Thank God for grammar geeks.

 

The Evolution of A Hug

When I was fifteen years old I learned an important lesson.

Don't poke the bear.

It was an overcast weekend afternoon, during our summer vacation. My parents were grocery shopping and figured that since my brother was 16, I was fifteen and my sister was 12, the three of us had enough combined maturity to leave alone for the length of time it takes to grocery shop for a family of five.

Haha suckers.

You know what happens when the responsible adults leave a 16-year-old boy alone with the lone television set, a SEGA system, a video game addiction and a pathological need to drive his younger sisters insane?

Nothing good, I can assure you.

So there he was, Stretch, the over-grown boy who thought that because he towered over every living thing in sight,  he could hog the TV.

And there I was, the much shorter yet way bossier younger sister who refused to be bullied.

My sister was the only intelligent child around. She hid in her bedroom to avoid the bloodshed.

It all went down something like this.

"Stretch, can you get off the tv now? You've been playing video games all morning and I want to watch a movie."

"No. Go away."

"No, you go away. I want to watch tv."

He ignores me as the sounds of an annoying 1990's video game taunt me in the background.

"Stretch. Get. Off. The. Television. Please."

Pew pew! Pop! Bam! Cutesy music and complete silence from my suddenly deaf big brother.

So I did the only thing I dared to do. I stood in front of him, blocking his view of the television.

"Stretch. I WANT TO WATCH TEEVEE NOOOOW."

My brother paused the game, looked up and growled in a low voice, "Tanis, you'd better move. Now."

The fifteen year old me was not so different from the modern day me, in that I don't respond well to being told what to do. Also, the fifteen year old me was way dumber than I currently am now.

"No. GET OFF THE DAMN GAME STRETCH OR I'M TELLING MOM."

"I'm warning you Tanis, MOVE." His voice was deadly serious.

So I moved.

I dove for the console box and tried to turn the entire thing off. My downfall was (besides being dumber than a stump and more stubborn) I miscalculated how quick my brother's reflexes were.

Quicker than a cat on a hot tin roof, darn it.

I can't remember with crystal clarity what exactly happened next but I know I did a lot of screeching at high volume in his face, he told me to back off, and I told him where he could stick his head.

The next thing I knew, a river of red ran out my nostrils and I was running out the door of our house, my brother hot on my heels. I was yelling for help and he was screaming he was going to pummel me.

Lucky for me, our parents happened to arrive home JUST AT THAT MOMENT. The rest is, as they say, history. But I never poked that bear again.

***

Fast forward 21 years.

***

We have one television in our house. One. It's located in our family room and it's communal property.

Yesterday, as I was online, reading blogs and such, I heard, "Fric, stop it."

Fric replied to her younger brother in a sing song voice, "What? I'm not doing anything!"

"Fric! Stop it!" Frac barked again.

Being the dutiful mother I am, I asked what was going on. Suddenly all traces of annoyance was gone from both of them as they answered, "Nothing! Just playing video games."

"Well stop fighting or I'm shutting it off."

"Yes Mom."

The peace lasted for about, oh, two seconds. They were playing split screen, a first person shooting game and somebody was deliberately shooting her brother. Even though they were on the same team.

I have no idea where that girl child of mine gets it. I swear.

My boy child was at his wits end. Because apparently, gaming online is a serious business when your mom only lets you play for an hour on a sunny day. Who wants to waste it constantly getting blown up by your big sister?

Before I knew it, there was more shouting, more arguing and I was suddenly having flash backs of my brother's fist meeting the tip of my nose.

Someone was poking the damn bear.

"That's it, you two. Stand up. Get over here," I shouted over top of their yelling and scowled at them with my meanest mommy face ever.

"I've had enough of this. If you want to act like children, I'll treat you like kids," I threatened. They glowered at me and then at each other.

The problem with disciplining is you need to have a plan of action. I didn't actually have any plan in mind, short of kicking them outside. But I figured with my luck, they'd just take it outside and continue their war there. I needed something and I needed it right now before any more bears were poked.

So I made an impromptu decision and I did what I used to do when they fought when they were little. When they actually were kids, not these grown up wannabes, straddling the line of adulthood.

I made them hug it out.

And I documented it.

Because they are still kids. But they won't be for much longer. And darn if some Sunday morning I'm not going to be wishing the two of them were squabbling over video games in my living room once more.

Which brings us here. A little photographic series I like to call the Evolution of a Hug. (Also known as DONT POKE THE BEAR.)

First off we have smugness and annoyance. I can barely tolerate the waves of "I want to rip off your limbs and beat you with them" that one of them is projecting. I choose to ignore said waves and pretend everything is sunshine and unicorn farts.

Unfortunately, the older sibling is unable to avoid said waves of anger and responds back by very maturely calling her younger brother a jerk. If this happens with your children the best thing to do is to fine them a dollar for cussing and remind them that Momma ain't messing around. Be sure to use your sweetest voice though. It confuses the honey badgers and puts them on high alert.

And we have contact. Hug therapy begins. Vomiting is threatened but no actual gagging occurs.

A little squeezing is to be expected. The oversized irritated sibling may want to assert his dominance by pretending he's a python and the annoying older sibling may want to fake actual innocence. Do not interfere. It's all part of the process. Just remind them, very sweetly, you have all damn day and you don't mind waiting until they can play nice.

Eventually, I promise, they'll crack. And they'll actually hug one another nicely and tell each other they love one another while making promises that they'll stop trying to cyber kill one another. 

Hug therapy. Every gamer needs it occasionally. Bears do too.