I'm often asked how I do it. How I manage to raise Jumbster, our little quadriplegic, blind, moderately deaf, non-verbal, developmentally disabled child and make it look easy.
Generally, at this point I'm giving the person a blank stare as though I don't comprehend the language they are speaking and then bark out a nervous laugh.
There is nothing easy about raising severely disabled babies nor do I have any real clue as to what I'm doing. Just ask Boo's family. They'll happily be the first to tell you I haven't the foggiest idea of what I'm doing. Ahem.
There is no real answer to that question, and I understand those who are most uncomfortable with his physical and mental limitations are the ones who most often ask it. But the truth of the matter is, I just raise him like I do the other kids. I toss a handful of cheerios on the floor and let the free-for-all begin. Darwin's law and all that.
Okay, fine. Maybe it's not the same with Jumby. But the real truth is I treat him like every other child I love. I try to give him every opportunity to shine, the same as his healthier siblings. It's not my job to honor his limitations, it's my job to help him be limitless. To provide him with as many opportunities as possible to overcome his personal barriers and navigate his way in this world so that it makes sense for him.
Regardless of personal limitations, it's all about teaching them to try their very best and giving them the tools to succeed. If I sit back and try and break down the overwhelming complexities of Jumby's personal needs, I'll admit: I get overwhelmed. So for the most part, I just put one foot in front of the other and take each challenge as it comes with a general sense of the direction I want to him to be in and point us both there, hoping for the best outcome. Much like I do my older kids.
But unlike with Fric and Frac, I spend a lot of my time paralyzed with worry about Jumby. Sure *I'm* his biggest advocate but now that he spends more time in the real world than he does cuddled in the soft comfort of my shrinking bosoms, I can't always be sure everyone around him has his very best interests at heart.
My kid may be adorable, but not everyone has the emotional energy to invest in him and I understand that. I adopted him, not anyone else.
But it makes for some hard moments for my inner momma bear. Sending him off to school, on a yellow school bus, into an elementary school and soon enough into a bigger school and then ultimately into where ever his grown up life lands him: It makes me sweat.
Like every good mother out there, I want the best for my child.
The truth of the matter, it takes more than just me, and Boo to raise Jumby. It really does require a community. More importantly, it takes people who believe in him the way we, as his parents do. It takes people who can see the invisible and make it visible to everyone else.
Look out Tony Hawk. I'm on your tail.
I had reservations about sending Jumbster to public school last fall. I wasn't convinced the school would be able to deliver on their promises and I had absolutely no faith in the personal aide hired to be Jumby's guide to the world. I didn't know her and I slightly resented having to leave my child in her hands when I didn't know if they were competent hands or not.
Look mah! No hands!
Sometimes parenting requires a blind faith. Not blind faith in oneself, or one's child but in the professionals you encounter along the way. I wasn't completely prepared to hand that faith over, not willingly, to a total stranger.
Rocking the ringtoss. I figure he's a horse shoe shark in the making.
But somewhere, along the way, with out my hovering presence, Jumbster thrived in his school environment. There were hiccups and bumps along the way as a rational parent would expect, but nothing that a bit of teamwork and cooperation couldn't overcome.
Jumbster now calls himself Hopalong Joe.
Jumby's aide became much more to him than his personal helper there to feed him and change his diaper. She became his coach, in a way I never could as his mother. She inspired him to try better and do better and she saw the light that shines behind the facade of twisted gnarled limbs and string of slack jawed drool.
It was with her patience and hard work that this year, the entire school year, as well as the year end Mini-Games day was a raging success. Jumby didn't just participate on the sidelines he full-fledged participated. Getting his hands as dirty as the rest of the able bodied kids.
Jumby ran the events like every other child did, and he did so with a smile on his face. Because for that small moment in time, he was winning, even when he came in dead last. He was just as normal as every other child standing outside beside him.
And that's really all I ever want for him. For him to know he's winning just by trying. To be included. To be seen.
What? A popsicle instead of a gold medal? Well, okay. Sounds fair to me.
This is why I agreed to write a series of (paid) posts for Procter and Gamble about their relationship with the Moms of Special Olympians. Jumby may not ever be able to represent Team Canada for the Special Olympics, but to me, he will always be my little gold medalist; overcoming obstacles most of us don't even see.
It's easy to tell you about how P&G supports The Special Olympics, most specifically the Moms. And it's even easier to remind every one that every time you leave a comment, like or share the Thank You Mom campaign on facebook Procter and Gamble will donate a dollar (up to $250,000) to support Team USA’s journey to Athens.
But it's not easy parenting these people. It's hard to let them go into the world and fly on their (often perceived as broken) wings to taste the freedom so many of us take for granted. It requires not just a faith in ourselves and our kids, but in the people that surround them and support them. It takes faith in handing over our loved ones and asking someone else to help make them shine.
So for you Laura, Jumby's coach and aide and most loyal friend, I thank you for being there for each hard fought step he took and for holding my hand every inch of the way. Thank you for helping my child shine his way into winning and for giving me the tools I needed to see that shine.
And for everybody involved in training a Special Olympic athlete, I imagine their mommas feel the exact same way.
Go on. Check out the facebook page and spend some time watching the awesome collection of videos from the World Games in Athens that are now posted. And please, like or share or the Thank You Mom campaign on facebook. You know Jumby wants you to. And so does his mom.