Moving On...

I have retired this blog.

Not surprising since I haven't posted in what seems like a coon's age. I still miss my Bug. I still cry for him, weeping tears of sorrow and guilt and mostly love. I still wish every second of every minute that fateful night ended differently. I still pray for him every night and thank God that he let me borrow an angel as my own for what time I had.

I still wish him goodnight and blow him my kiss, praying that it will arrive on an angel's wing to my boy.

But I am trying to move through this pain, and carry on.

I still write about missing my Bug, but I do it over on my other site, where I find laughter really is the best medicine.

I am choosing to leave this blog up, for any person who stumbles across it or needs it. When Shale died I was desperate to find the words of a parent who had walked this path that I was forced on to.

I'm still walking this path, just on a different blog.

If you know of a parent who needs support, whether it be due to a loss or a child who has special needs, please don't hesitate to contact me.

For it takes the humanity of the world to cope with a pain this great.

I speak from experience.

You can find me over at Redneck Mommy.

Thank you.

My Truth

I remember the day the nurse brought my freshly birthed daughter back into my room after being cleaned up and examined and thinking, "What the hell? What do I do now?" At barely 20, I was woefully unprepared for the trials motherhood thrust upon me the moment I pushed that baby out of my nice, warm uterus. I've been dog paddling in the pool of parenting ever since.

It ain't pretty. I barely have my nose above the water, and every now and then a wave comes and threatens to take me out. Parenting is hard. And it is painful. Beyond the obvious feminine aspect of gestating, labouring and delivering, being a parent hurts. Worse than if you slam your finger in the car door or get kicked in the face by a four year-old Arabian stallion.

(A demonstration of what type of creative cusser I can be in both instances.)

Just when you finally learn to live on two hours of sleep, succumb to your infant’s every demands, become adept at diapering with one hand and feeding with the other, and accept there will never be a moment of sexual intimacy between you and your partner again, the little buggers go and change the rules on you.

The next flaming hoop of fire to jump through is when your darling precious learns to walk, talk and pee in a pot. Preferably the ugly plastic one you bought special for the occasion and not one of the pretty stainless steel ones you received as a wedding gift from an uncle, and left on the floor so your kiddy could bang on it with a wooden spoon...

(The real reason I call myself a redneck...my children pee in whatever receptacle they can find...or in my son's case, right off the freaking front deck.)

If you are lucky, both you and your child survive this landscape fraught with hidden obstacles relatively intact and bonded stronger than ever.

(Say 'hamburger' for mommy's friends darling. Be a good girl. See!!! I told you!! Isn't she the sweetest thing?! Snicker. Hangaboogers. My kid is the greatest!)


Then like a stalk of corn in the middle of my mother-in-law's garden, they grow again, thereby changing the rules of the game, once more. Every stage brings with it new rules, new dangers, new dilemmas and better rewards.

I never expected to enjoy parenting this much. As a teen I vowed my uterus would remain unused. Wasted anatomy. I wanted to save the world and make millions while doing it. There was no room in my vision to include children. Falling in love changed that.

(Forgetting about grade nine sex education and the value of rubbers may have also played a small part in my attitude adjustment.)

Yet, before I reached 25, I had squeezed out three little angels, pretty much solving the mystery of how babies are made.

By boarding the parenthood train, I bought a ticket for disappointment, sadness, anger, laughter, love and loss. I silently agreed to give away the biggest part of my heart to these dirty, blonde rugrats who often don't protect the soft side of their parents.

(Ask Boo. He's been kicked in the man grapes more than once.)

You must give of yourself wholly and put your heart out there so that your children can run off with it when ever they choose. It's written in the fine print at the bottom of the contract.

There is no pain or reward greater than being a parent. If someone had told me seven years ago, that I was going to deliver a baby most people wouldn’t want, most people wouldn’t understand, a child most people chose not to see, I would have said told them they were off their freaking rocker. Bad things happen to other people. Not Boo and me. We had reached our quota for bad things. Surely, God or Nature or my fucking uterus wouldn’t be so cruel as to stick us with that.





Proof I am a natural blonde.

Except, we weren't stuck, we were blessed. If you had told me seven years ago that this child would be the best thing to happen to us, our marriage and our kids, I would have laughed uncomfortably and then ran screaming from the room, to search for some alcohol.

And if you told me 653 days ago, when I walked out of the hospital with nothing but a wad of tissue in one hand and an big white plastic bag in the other, that I would want to walk that path again, fight with bureaucrats and beg for a ticket on that train, I would have probably strangled you with my bare hands.

The stakes of this parenting game suddenly got a whole lot higher. We don’t often think about our children passing away. Sure, we fear it. In an abstract way. The same way, we fear they will be stolen from us while shopping in a crowded mall, or snatched by some stranger on the street. We know the possibility of death exists but if we sat and actually understood what it would mean to lose our child(ren) we would be paralyzed with fear, unable to give them the space they need to grow.

I knew something was wrong with my pregnancy with Bug. I used to tell my husband that I had an alien baby inside me, and I was only half joking. I would complain to my doctor about my size and my fears and she would quickly dismiss me. I would leave half annoyed she didn’t hear me and half relieved she didn’t listen.

When Shalebug was born, and all the doctors and specialists kept telling me he wouldn’t live long, or be normal, my heart cracked with every word, every prophecy they uttered. I knew that my love couldn’t save him, but I was hoping it would prolong his life.

I believe it did. I never prayed for him to heal or be normal. I never asked God to fix him or make him whole. I couldn't bring myself to wish for him to be anything who he was because who he was to me was bloody brilliant.

Instead of hoping to change him, I hoped for him to walk through life with grace and dignity and love. I hoped he felt no pain. And most of all, I hoped every night when I went to bed that I would wake up to have another day with him.

Wishes don't always come true.

People ask what I fear most, now that I have been through this nightmare. I could say not much, having walked through this fire and survived. But being the boob-oogling, over-emotional, hyper-hormonal woman I am, I can't lie to you.

It would be wrong to say I fear losing a child. There is no word to describe the terror and anxiety I feel when I think of life with out yet another of my kiddies. The word 'fear' simply doesn't touch it.

I think what I fear the most is losing the ability to try. To try and live without the shadow of grief clouding my every movement, every choice. I would rather love and lose a child than be too scared to try and parent again. I can think of no better way to honour my son and help my children through their pain than to remember how to laugh, to love and to live. How to try.

To learn to ignore the shackles of fear and remember the bonds of love.

Because, in the end, all we have are our memories of the ones who touched us, made us into who we are today. If we don’t accept the chance of dying we can never really live.

And that is my truth.

Which I will be reciting over and over to myself as our final adoption meeting advances upon us like a steam train next week.





Yes, I really did force him to wear that dorky hat. He's still pissed.

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.







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.

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.





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.

Looking For A Handout

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.