Friday, June 22, 2007

Graduation Day

Shalebug would have graduated today. Sure, it would have just been a kindergarten graduation ceremony, but to me (and likely all the other parents involved) it would have meant much more than that.

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It would have been a reward to us parents for putting in our time, paying our kindergarten dues. Suffering through endless hours of trying to teach your child to tie his/her shoes, learn to write his/her name, learn how to read.

It would have been a reward for time spent as the class-mom, helping kids use scissors correctly and not amputating a digit while trying to cut out turkey shapes and pink cardboard hearts.

It would have been our reward for tying shoelaces, telling kids not to run in the halls, get your fingers out of your nose, and no, girls don't have cooties. (After all, everyone knows cooties comes with age, and poor hygiene.)

It's our reward for being snack mom/dad through out the year; for remembering to slice up those apples and even for that time when you forgot you were the mom designated to bake the cupcakes and had to sell your soul to the neighbourhood bakery to let you come in before store hours to buy some treats that you would try to pass off as your own. (Not that I would EVER do that. Snicker.)

All of the patience and energy we had spent the last ten months focusing on our precious child would be rewarded with the pomp and circumstance of watching our lovely kiddies march their processional, fidget, giggle, pick their noses and act proud as they waited to hear their names called.

I would have hooted and hollered and made an ass of myself the loudest. I tend to be known for that. I'm the mom that doesn't mind walking up to the front of the gym to get the good photo, the mom who believes all children need to be applauded, not just my own.

And I would have been cheering wildly. Bug would not have grasped half of what the others in his class would have. He would not have been able to write his name, and I doubt he would have been able to recognize it in a group of letters. He wouldn't know his colours or be able to tie his shoes and I'm fairly certain the concepts of numbers to him would have been like astro-physics to me.

But yet, he would have succeeded. He would have overcome his hurdles, the ones individual to him. He may have made it a whole month with out being hospitalized. Perhaps he would have been able to stand at the water table and not recoil with fear. He certainly would have shown the other children how to love. He would have taught them all patience and understanding.

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Bug working with his speech therapist.

He would have fostered a protective friendship with his group of peers, all of whom would have clamoured to give him a high five, or sit next to him at circle time. They would have wanted to help him use his computer, the one that gave him a voice, and he would have been the coolest kid in the class for it. They would sit next to him at snack time and eat his pudding for him, because that's what friends do. After all, Bug couldn't eat it, he wouldn't have minded sharing.

The really brave kids would have asked to help feed him and would have felt like professional nurses when they squeezed water through his g-tube with shakey hands. They would have filled up his syringe with water and squirted each other with it until one of the teachers took it away and admonished them with a look.

Through it all, Bug would have laughed. He was his father's son that way. A tease, a joker and always easy going.

I imagine when Bug's name was called, his dad would stand and proudly clap, while rolling his eyes at me, as I'm up at the front, telling Bug to look at Mommy so I could get a nice picture. Would he have walked to the front by himself, with a walker, or with his aide? Perhaps he would have been wheeled up in his chair if his feet were bothering him. I can see clearly in my mind his shakey hand outstretched to grasp his little photocopied diploma, his chubby fingers crinkling the paper.

Afterwards, we would have greeted the teacher and offered thankyou's for all of her hard work, and patience and understanding while working with our special boy. I would have hugged his aide while trying not to embarrass my son too badly as I smothered him with kisses.

Then we would have proudly left the school with our son, the new graduate, to get ready for his next year of academic battles.

There will be parents who never had the opportunity to know us and didn't understand my son, or his special personality and they will wonder why we cheered so loudly. After all, he didn't accomplish the goals the other kindergartners did. They will wonder why he was part of the graduation ceremony when obviously he will not be attending grade one, instead, he will be part of an individualized learning plan, carefully put together to help him get the most out of his limited capabilities.

But I would have been tolerant of their ignorance, able to simply bask in in my son's glory for the moment, before having to go back to our carefully constructed reality.

People don't always see the value of people with disabilities, especially those with mental disabilities. By allowing our son to participate like all the other children, it would have been able to foster a sense of normalcy for him. More importantly though, it would have taught those kids in his class respect and acceptance. Bug would have taught them more than they were ever able to teach his malformed little brain.

He would have taught those kids, and some of those parents, the value of life, of love and of perserverance. All of this wrapped up in one wobbly, slimey, messy blonde haired little boy.

I know this, because this is what he taught every member of his family.

I'll miss that today when I watch those kids fidget on the bench this afternoon, waiting for their name to be called, while peering hopefully out into the crowd, trying to find their parents or loved ones.

There will be one mommy in the crowd with no one looking to find her. But I'm okay with that. Bug found me. He knows where I am. And he knows that I'll be the mom whooting and hollering the loudest for all the kids, while trying to hide the tears in her eyes.

Thursday, June 07, 2007

Neat Feet

With the emergence of the sandal season slowly making it's appearance up in the northern hemisphere, I recently took it upon myself to pack my darling children up and head into the big city in search of some charming footwear that don't resemble mukluks or ski boots.

After silencing the chorus of whines with threats of bodily harm bribes of fast food for good behaviour, we finally got down to the business of shoe shopping. Shopping for shoes is serious business to me. My reputation as a mother is largely based on what type of foot wear my children toddle about in. (At least in my mind.) I try to hide from the world the fact we are a family of rednecks by shodding my children with good shoes.

(I no longer use animal skins and twine. It tended to be a dead giveaway, even if it was cost effective.)

Shoe shopping also has a more personal meaning to me than just buying the cutest footwear in the market.

After living through the trials my Shalebug endured, and the hell his own feet put him through, I see a shoe and appreciate how fortunate my children and myself are. We can simply try on a shoe. And walk, run, jump. Not everyone is so lucky. A shoe to me, is a reminder of health and how fragile it can be.

My son was born with stubborn bilateral club feet. My first glimpse of him after pushing him out of me with Herculean effort was his twisted purple feet. I knew immediately upon seeing them that my life would never be the same. I hadn't yet seen him, but the silence in the room was deafening. As I anxiously waited to hear his first cry (which came MONTHS later) the only part of his body that wasn't shielded from me by the worried backs of the nurses and doctors and his father were his tiny twisted feet. Which were so bent they almost touched his bum.

Months of casting and tendon releases followed with years of physiotherapy and multiple surgeries, eventually lead to bone removal and permantent splints. All of which did nothing to correct the curvature of his stunted little feet.

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I still have that razor sharp 4" long pin.

Feet that at first scared me and repulsed me. It wasn't the tubes or the breathing apparatus, or the bald patches shaved into his precious hair that made me fear this unknown baby. It was the grotesque nature of his hooves that freaked me out and made me doubt my ability to love and ultimately parent this child who was so different than my previous babies.

But like all things new and strange, time and understanding lessened this fear. Soon those feet became the focal point of my love for him. The first thing I kissed when he woke up in the morning, the last thing I kissed when he went to bed.

Those crooked tootsies represented all that he was and who he would be. Instead of curled feet I saw strength of spirit, resilency and the fragility of life when ever I massaged and stretched them. Those feet became part of who we were as a family unit. Everybody understood what those crooked feet meant.

Those feet meant love, understanding, patience and tolerance. Except for when he used them as weapons and would kick them at my glasses. Then they were a big pain in my ass. Or when he was casted and I took all the kiddies to the Shriner's Circus and he decided it would be great fun to bump his casts into the man's head who was seated directly in front of us. Then they were a source of amused embarrassment. Oops.

Those diminuitive little feet meant so much. When they grew strong enough to support his weight we were able to celebrate his fragile first toddling steps at the age of four. When they were gashed open and missing bones, they represented the hope for a brighter future. When they were finally fitted for his first pair of shoes months before his death, they were cause for celebration. Through it all, they were hurdles to overcome, challenges not to be forgotten.

They were his feet; they were my reminder of so many others out there who were not as blessed as I.

As Fric and Frac were ripping apart the shoe rack in search of the coolest, fastest and prettiest sandal out there, his angel feet were a reminder of who was missing, who is still loved, who is not to be forgotten.

The kids and I found our booty (get it...booty? Couldn't resist) We walked to the front of the store and paid for our shoes, all of us excited by our finds. But as we walked out to our car, there was a little girl in leg braces similar to Bugs, being carried in by her father, with her mom walking wearily behind them.

I saw in that mom the same love, strength and fear I see when I look in the mirror. I knew the pain she would feel when she tried on endless pairs of shoes on her daughter, hoping to find ONE pair that would fit around those plastic pain's in the ass. I wanted to tell her not to bother, just go get custom shoes made, as we had to do.

But I thought better of it. I didn't want to intrude. I didn't want to take away the hope she harboured when she saw those cute pink sparkly runners she would pray to fit her daughter. To make her daughter look more "normal." To make herself feel more like the average mom.

Maybe she would have better luck than I ever did, in search of the elusive shoe to fit my special child's special feet. And if she didn't she may not welcome my advice, my taking away her search for normalcy with my insight, my knowledge.

I didn't take into account my children's interest in those shiny purple plastic splints. They raced right up to that brown haired girl and her parents and struck up a conversation.

"My brother had club feet! Does she? His splints were purple too! But they had stars on them, not kittens."

I held my breath for a second, wondering if this family would resent my children honing on their child's obvious disability. But the dad just bent down and looked my kids in the eye and asked about their little brother. They yammered away to these strangers outside the shoe store, spilling their brother's and now their story and how when Bug was finally able to get shoes he started to walk. They gushed on in the way excited kids do that once this little girl got her shoes soon she would be walking too.

I don't know if that would hold true for that little girl, but I certainly wished with all my might that it would. The little girl was fascinated with my kids, excited that some big kids were interested in her. My heart broke a little when I realized Fric and Frac missed their brother so much that a child with similar splints would speak to their hearts so deeply.

The mom reached down and stroked my son's prickly head and told them how lucky their brother was to have such nice siblings. She then scooped up her daughter and told the kids they were blessed to have such a special brother with such neat feet.

I couldn't have said it better myself.

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I miss those toes.