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.

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.

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.

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.

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.

I miss those toes.

Note: Updated below…if you can make it that far.

Three times this week, during the quiet hours of the evening, while I have been ensconced in what ever brilliant piece of literature I have been reading (read: Cheesy romance novel describing the penis as a throbbing steel rod of manhood and the vagina as the soft folds of a feminine flower…) the telephone has rang. While this in itself is not unusual, the callers have all been three different telemarketers haranguing me to buy their credit cards, their long distance plans or their vacuums.

Three different times this week, I have been forced to tear myself from said brilliant literature to politely decline their offers. Last week I was inundated twice for different charities. It seems every time the phone rings these days, someone is looking to take my husband’s hard earned money off my hands.

Well, now it is my turn to flip the tables. I am sitting behind your computer screen with my hand held out, batting my eyelashes, trying to relieve you of some of your dough. Because after all, I know you are all hiding money trees out in your backyard and you just aren’t sharing.

Today is the Global Make A Wish Day for the Make a Wish Foundation. For 27 years this foundation has been granting the wishes of children with life-threatening medical conditions to make their dreams come true.

I have had several opportunities to meet children who have been granted their wishes. A couple little friends of mine wanted nothing more than to go to Disneyland, while another wished for a therapy pool to relax his muscles and relieve the pain in his back and legs. One very special little girl that I had the pleasure of meeting and befriending wanted nothing more than to ride in a fire truck and play firefighter in her home town, some three thousand miles away from where her family currently resided. She missed her old friends and family. Her wish was granted and three weeks later she passed away a happy little girl.

Most of us don’t think about the children out in the world fighting their battles with disease, congenital deformities and onset of sudden illness. Occasionally, we are reminded by media, or when we see a child who is obviously ill or handicapped in the supermarket, that there are hundreds of children in our communities who fight a war they won’t win, one we will never really understand.

We duly donate a dollar with a purchase at Walmart or McDonalds, drop our spare change in the box next to the register and sometimes we even make monthly donations on our credit cards if we are fortunate enough to have the cash to spare. But do you ever think about the child that would benefit from your generosity?

I never did. I just did it out of obligation, some small guilt that niggled at the back of my conscience, thankful that it wasn’t one of my children that needed such services.

Until one day it was.

Then it became a whole different ballgame. I was thrust into a world where there was so much need, and not enough money to fill those needs. Hell, if I had to donate to every charity for every diagnosis my darling son received, my husband and I wouldn’t have been able to diaper the little dude.

But in the course of his life I met many children who had such health problems it staggered my soul.  Some children never leave the hospital in the course of their short lives, others like my Bug, could go home only to return days or weeks later. It is as though there is an invisible chain tethering them to the damn hospital.

As a parent it is easy enough to forget that your child is a child when you are struggling with their health. Worrying about whether they have the opportunity to play in the sand on a sunny day is not high on the priority list when you have medications, therapies and appointments just to keep that child alive, with you one more day. The stress of having a medically challenged child in a home takes it’s toll on every one, not just child.

But a sick child is still a child, as my Bug’s laughter would often remind me. And every child deserves a dream. Sadly, the severely ill child often does not have the simple benefit of health to be able to chase their dreams like most children. They simply lack the time.

Bug was granted a wish. I was honored and yet dismayed, for I realized that this meant he really was fragile. It was a harsh reminder of just how fleeting his life might be. But it was an amazing gift that would not only benefit my sick child, but my two small others, so often overlooked because of their baby brother.

Boo and I decided to make the cliched trip to Disneyland. Shalebug was especially fascinated with people stuffed inside mascot costumes and he loved the thrill of the more gentle rides. We would take Fric and Frac and create the memories a child could dine on for an eternity. It would have benefited the whole family.

 

Sadly, Bug’s time ran out, and his wish was not granted.

 

But I still sit here, smiling pretty, asking you to think of all the children out there who may never have an opportunity to embarrass themselves on national television to chase their dreams of stardom. I’m asking you to think of the kids who will never get to run the diamond of a baseball field, or sit in the bleachers next to their parents who are chugging back the beer.

I want to remind you there is so much out there most of us take for granted on a daily basis; normal everyday things like going on a class field-trip to the fire-hall to sit in the fire truck and then eat icecream with twenty other kids with sticky fingers and silly grins.

 

The people with the Make a Wish Foundation haven’t forgotten.

 

Please consider supporting them. I’ll even jump through hoops of fire, naked, if that’s what it takes to make you donate.

 

Now I’m standing up and brushing the dirt off my knees. This begging stuff is hard on a girl’s back.

Update: The sands in the hour glass have slipped through the glass and it is no longer April 29. While I’m still sitting here with my palm out, looking to grab your cash, I understand a lot of people don’t have the means to support a charity of any type while struggling to make the bills. I do ask, however, that you think of the kiddies out there who aren’t as fortunate and as healthy as most of ours. Sometimes the simple kindness of a smiling stranger is all it takes to make their dream come true.

Now I’m coming down from my soap box (albeit with absolutely no grace or dignity left intact) and I’ll be back tomorrow with the funny. But I wanted to thank all of you who took the time to remember my Bug, and donated. It’s not too late. I, er, they will take your money anytime!! Thank you so much for allowing me to hit you over the head with my personal two by four. Your generosity and support is amazing.

When the power went out for two days last week, I was forced to not only live like a pioneer woman, bond with my children and eat nothing but dry cereal all day long (really, I am ASHAMED. The sugary goodness of the Fruit Loops call to me in times of crisis), but I was forced to reexamine my life and mull over the choices I have made. I had nothing better to do at the time, courtesy of the black out.

Since my son died 18 months ago, I have tried to fill my life up, tried to quiet the noise that rages inside my head during my waking hours. I knew I was doing this, but I seemed unable to stop. The pain was too great. The first four months after his passing, it simply hurt to breathe. I sat on the couch where him and I would snuggle and watch soap operas I mean, the birds outside our window and I would breathe him in, knowing how blessed my life was, how full. Suddenly, I was alone on this couch, and my life was obscenely hollow.

I knew that I was sinking deeper in my grief every day and I was harming my older children by just sitting there in my blanket of sadness. When a family friend tossed me a life line and offered to put me to work, I reluctantly grabbed it. I didn’t want to work, I didn’t want to see people and have to explain all over, everyday, and endure their looks of pity and sympathy. But I didn’t want my kids to grow up and tell their spouses and children about how the death of their little brother wrecked their mother, their family.

So off to work I went. And it was bloody hard work too. Working at green house is physical. But I was surrounded by friends, and I found that it actually helped to tell people my story. It was cathartic, and I was healing. When that job ended, as all seasonal jobs must, I took in my nephew, The Worm. It was now summer break, and I was surrounded by my kids and a four month old Worm, and life was too busy to have time to break down.

Except that is what I did. I barely remember the summer, the heat, anything. I remember changing diapers and smelling the sweet spot on the side of The Worm’s neck and wishing for the millionth time that it was Bug I was smelling. But the demands of an infant and two active children didn’t allow for me to wallow in my misery for long. Soon autumn rolled around and when the kids went off to school I filled up my days with blogging and reading blogs, and the Worm.

Every day seemed a bit better, a bit brighter. I was starting to untangle my sadness. I was able to remember how to feel joy and not just pain, remember how to love, not just my children, but myself. I was able to forgive myself for the ultimate mommy failure: The death of her child.

Intellectually, I knew I was not responsible for the death of my kid. I did everything possible to prolong his life and make it the best little life possible. But while my heart was secure in the knowledge that I loved him enough, gave enough, sacrificed enough, my brain would not stop with the What If’s.

Busying myself helped quell those nasty little What If’s. I barely wrestle with them anymore. They have been mostly banished to the great outdoors, along with my fear of spiders and mice. I try not to worry about any of them anymore. But then suddenly, I lost the Worm, when my blog became public. Family politics prevailed and my sister and her child were caught in the middle. Now I was truly alone, since those first four months of Bug’s passing.

I thought I was coping well; I was still being funny, I was still blogging. My kids were reasonably happy, my dog well fed. But I was still doing what I had been doing after the first four months. Busying myself to avoid my grief. I focused on my friends, my blog, the upcoming adoption. Anything but me. After-all, how many times can a person wonder if this pain will go away?

Turns out, a lot.

The power outage took away all my distractions. I had no computer, no telly, no music and no phone. I was stranded in my drive way, unable to leave or have anyone enter my snow covered home. While I sat there and tried to entertain my kids with endless rounds of Scrabble and Monopoly, I wondered what life would be like with Bug if he was still alive. Would he still walk? How tall would he have grown? Would he be able to sit on a chair with out me having to strap him in? Would I still want to adopt a new child? The questions raced through my mind, until I was desperate to drown out the noise.

Sitting there, with my kids, trying to make sure they didn’t maim one another, I talked to them.  And listened.  I heard how much they missed their brother still, and I realized, it wasn’t just me struggling with this heavy bundle of pain. They talked about how scared they were bringing in a new little kid, wondered if they would love it, worried that I would be so busy with the new child that I wouldn’t have time for them. They remembered how much time I spent on Bug; they haven’t forgotten all the things they missed out on because of their little brother.

They worried they wouldn’t be a part of our new family. I listened, and I tried to reassure them, but when they lost interest in what ever game we were playing and wandered off to wrestle, I sat back and examined what they said. I worry too. I worry I won’t be able to love a new child the same way I loved Bug, I worry I may resent the new child and the constraints he or she will place upon me with their needs. I worry I want to adopt to try and fill the vacant hole Bug’s absence has created in my life.

Boo feels the same way. The closer the adoption creeps towards us, the colder our feet become. Is this normal? Are we just psyching ourselves out? I have voices screaming inside my head, all arguing over top of one another, clamoring to be heard. I don’t know which voices to drown out and which to heed.

I fear ramming a child down my kid’s throats and having them resent me forever more, repeating the cycle my own mother and I seem trapped in. I don’t want to hurt my children by placing my own needs before them. Being a parent means sometimes letting go of your personal dreams and doing what is best for your children. Is this one of those times, one of those dreams?

I am listening to the quiet now. Trying to sort out the voices, the doubts, the fears. I am trying to face my grief once more, while marveling at the lasting power of this pain, this sadness. I wonder how long will it be before I can remember my child and all I gained and derived from him with out succumbing to the overwhelming sadness and hurt of his absence.

I am very aware I am standing at a crossroads, and the direction I take will not only impact my life and my husband’s, but that of my children as well. I must not sacrifice my family as they are now in an attempt to recreate the family I had once. I must honor all of my children, not just the ones who passed.

So I must busy myself once again. But this time, instead of filling my hours trying to avoiding my feelings and fears, I’m going to try and embrace them. Maybe, finally, I will know what direction I am supposed to go.

As a small child, I loved Easter. My family wasn’t particularly religious so my only obligation for this holiday was to create an Easter basket pretty enough and big enough to house my chocolate bunny and assorted treats the bunny would leave behind. Usually socks and a set of jacks. Sprinkled liberally with those foil-wrapped chocolate eggs that now remind me of the moose shit I have to clean off my lawn every damn week in the summer.

Yummy. You haven’t lived until you step into a pile of moose turds.

Things changed as I became an adult and a parent. Not only did the little foil-wrapped chocolates lose their appeal, but suddenly I was responsible for filling the Easter baskets, not just gnawing on the chocolate bunny. There was also the matter of me becoming a Christian and suddenly this holiday actually has a meaning beyond a little rabbit shitting out chocolate eggs for kids to eat.

Now Easter means dipping hardboiled eggs into the vinegary dye, after an Easter egg search and basket hunt where Boo and I try desperately to outwit our cunning little children, all while thanking our Lord and feeling guilty for not attending the local church service in favour of sleeping late and um, fornicating like rabbits.

Since my Shalebug died, all holidays have lost a little of their holiday sheen. Now as the kids hunt for their colourful eggs and gnaw on their chocolate bunnies, I am bogged down with sadness and mired in memories from the past, unable to truly enjoy the moment.

It seems as though my Bug hopped off with my holiday heart and left behind little moose turds in it’s wake. Bugger. It is hard to truly enjoy the moment when I worry constantly that he will forget me, or resent me, or worse yet, that it’s truly over, ashes to ashes, dust to dust, and I will never have another moment to tell him how much I loved his stinky, drooling, hair-touching ways.

It sucks the holiday joy right out of a mom. It’s right about this moment that my faith steps in and kicks into auto-drive. That and my anti-depressants. Together, they work like magic and prevent that blanket of grief from smothering the joy right out of me.

I wish I could say I was finding it easier as the grains of time slipped through my hourglass. This is the second Easter I will face without having a 30 pound sack of drooling child attached to my hip. The second Easter where I won’t have to find non-edible treats to put into a basket for a child who can’t eat. The second Easter where my son and daughter will dye their eggs and reminisce about their brother, and then break down with a sadness that I can never completely hug away.

Sometimes it really sucks being the mommy.

This year though, things have shifted a half degree. The binds of grief have loosened a fraction around our hearts, allowing us to breathe just a tad easier. Memories of the Bug aren’t as painful, even if they are just as vivid. The longing for him is worse, but our tears have dried some. I anticipate a good-sized chocolate bunny and a well-filled basket will help smooth some of the bumps an Easter with one less will bring.

After all, we are bruised but not broken. And the Easter bunny hops on for everyone. Even the grief stricken. And this year, the Easter bunny hopped a little earlier for Boo and I.

Yesterday, we received a phone call from our adoption case worker Easter bunny to inform us that she will be by on Tuesday to finish the paperwork for our adoption. Which means, by the end of this month we will be approved (finally) and free to start shopping for a child child matching.

I may get my kid before the end of the school year yet. How’s that for a well filled Easter basket?

As I phoned my darling Boo to tell him the good news and have him yank me down from the stratosphere of happiness, I noticed he was remaining a little quiet while I gushed on about great timing, kids names and my love of all government employees in general.

“What’s the matter Boo? Have you changed your mind? Do you still want to adopt?” I tell you dear internet, my heart froze with fear at this possibility.

“Not that at all. I’m really excited. I am just a little worried.”

“Worried? About what? The home assessment is a formality. You and I both know they will try to toss as many handicapped kids at us as humanely possible, just to get them out of the system. We are a gold mine to these people. What’s to worry about?”

Now, I’m concerned. I’m running through all the various scenarios that we could face and I still can’t see why we wouldn’t be approved to adopt a munchkin. I’ll keep my nipple rings covered and my tattoo hidden. Surely they will overlook a little silver hoop in the nose.

My house will be cleaned, the kids at school (thank God, so they won’t tell the lady I make them drink out of the toilet bowl when they are thirsty) and I will refrain from cussing like the redneck I am. What could go wrong, I think.

“I’m just a little concerned she may find your blog. And then, you know. Read it.”

SHIT.

I’m fucking doomed. I may have to settle for foil wrapped moose turds after all.