Missing my Bug

Moving On...

2007-08-16T17:25:00.000-06:00

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

2007-08-03T21:38:00.000-06:00

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

2007-06-22T21:37:00.000-06:00

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

2007-06-07T21:37:00.000-06:00

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

2007-04-28T21:35:00.000-06:00

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.

A Lasting Darkness

2007-04-23T21:34:00.000-06:00

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.

A Basket full of MooseTurds

2007-04-06T21:31:00.000-06:00

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.

Visions of Grace

2007-03-21T21:31:00.000-06:00

I was never one of those mothers who wished for a moment of peace and quiet. Well, maybe I was, but that was long before the birth of Shalebug. When he arrived everything shifted. The absence of normal that came with his disabilities had me longing for the mundane. I longed to hear a baby cry. To see him scrunch his face up in anger and to see that same face smooth out with a big baby grin. I longed for spit up and messy diapers. As he grew I longed for squabbles over dinky cars and watching episodes of Thomas the Train over and over again until I thought I would lose my mind.

I longed for a regular kid. I felt jipped that I was missing out on all the experiences that culminate in parenthood. His brother and sister were such fabulous little pains in the asas, I was heartbroken that I wasn't going to experience that type of childhood all over again. I felt robbed. And more so, I felt that Bug was cheated in the cruelest fashion.

Those feelings lasted for a while, clinging like a sock to a towel after being pulled from the dryer. I don't know when exactly my perception shifted, but suddenly I was no longer grieving his (and my) losses, I was celebrating his gains. When Fric and Frac learned to sit, stand, speak, and most of all, potty in the big person's toilet, I celebrated. Boo celebrated. We felt the parental high that comes with watching your child grow and overcome the milestones before them.

With Bug, there were very few milestones. I was given a calendar to mark his first year. First smile, first grab of rattle, first step, first word, first shots. I didn't even get to use his first tooth sticker. His tongue was stitched to his bottom lip, pulled over his lower gum, so that he wouldn't swallow it or choke on it. It was surgically released when he was 13 months old. When I saw him for the first time after that surgery I was amazed to see two white little teeth staring back at me. Hidden this whole time, under his tongue. I never even knew.

Instead of the traditional milestones we ended up making our own. The first time he didn't have cardiac arrest during surgery. The first time he went through the night with out his oxygen saturation monitor going off and scaring the shit out of Boo and me. The first time he'd let me suction his drool without him biting down on the hose. Sounds scary and foreign, I know, but it really wasn't. It was just different.

Instead of looking forward to his first step, we looked forward to him holding his head up. (18 months.) Instead of toilet training we celebrated him being able to sit on the floor with pillows around him. (25 months.) Instead of words we celebrated a tentative high five. (37 months.) And when I say celebrate, I mean break out the balloons, phone the in laws, pour the wine and raise the rafters celebrate. No one thought we were silly or overdoing it. Because for this small, wee man named Bug, it was a milestone. Overcome with a grace and perseverance that I have rarely seen in a human being. It overshadowed his siblings accomplishments with quiet dignity. A little boy who struggled to breath, to eat, to move, but never gave up.

It was, and is an amazing testament to the human spirit. It became addictive. Not just for Boo and myself, but for Fric and Frac as well, who revelled in watching their brother take tiny steps towards independence. For Boo and me, we marvelled at how lucky we were, to be given an opportunity to witness these small little children morph into people. We were blessed. Not only did we get the experience of watching Fric and Frac conquer the world of toddler hood, but we got to enjoy the journey that Bug took, a journey most people never witness or understand.

It was very addictive. And our family is suffering the symptoms of withdrawal. For a boy who never spoke, he made so much noise. He filled up the spaces in our lives. His absence is deafening. Fric and Frac miss him, in a way I will never understand. Boo says he feels as if there is a hole in him that will gap open forever, a wound that will never heal. For me, it is all of this and more. When Bug died, he took my heart with him. I have had to relearn how to live, love and breathe again. And every morning, I have to start all over again.

When Boo was home this past weekend, we ~~dumped the kids on the in laws~~ got a babysitter, and went for some mommy-daddy quality time together. That's right, we went shopping. The true romance of being married almost a decade. Nothing says love like being able to walk hand in hand in a crowded mall and oogle the younger generation and their perky boobs.

As we sat and licked a frozen yogurt cone and discussed the merits of diamond wedding bands versus bigger diamond wedding bands, a young man and his aide wandered through our line of vision. His gait was halted, he stuttered and his hair was slightly greasy with a rooster tail sticking up in the back. His aide was a middle aged woman who refused eye contact with the shoppers around her. She looked tired and haggard. The young man was enthused by the life buzzing around him. He and I made brief eyecontact for just a second, and the hairs on the back of my neck stood up. He smiled widely before his aide hurried him past us.

My husband was watching me and him thoughtfully, and when the man passed Boo noticed a tear welling up in my eye. He grabbed my hand and squeezed. I licked my yogurt, trying to quell the rush of emotion that threatened to break past the dyke. After a moment, he commented that when he sees a handicapped person he wonders what Shalebug would have been like at that age. Would he have worked as a greeter at Walmart? Would he have been able to cobble steps together or be pushed around in chair. He just wonders.

I digested this for a moment. When I see a disabled person, I too, wonder about Bug and the life he was shorted. But mostly, when I see a disabled person, I find myself blessed to be able to see them. For before my boy, I wouldn't have made eye contact. I would have felt pity for them and more so for their aide; I would have felt slight disdain and a sense of relief that I didn't have to shoulder such a burden.

As I watched that man and woman slowly shuffle down the mall, I felt awe. Awe for the obstacles that man overcame, and awe for the obstacles he still faced. I envied that man, and his life and wondered briefly why he made it to adult hood and not Shalebug. But mostly, what I saw was a little boy with long wavy blonde locks wobble his way around his mom with obvious delight. I remembered letting him roam in the mall and him losing his balance and faltering against an attractive woman. Him steadying himself with his small chubby hand on her ass. Her look of surprise and my embarrassed laughter as I scooped him up and apologized for my little ladies man.

When I see a disabled person, I see all the joy my boy gave me and my family. All the hope he inspired and still inspires. All the love he blessed us with. I see the possibility for greatness, even if it's a quiet greatness, one not readily acknowledged by the masses.

I squeezed my husband's hand and shook myself out of my reverie, and told him, "I see grace."

And I do.

Thank you Bug.

Lost and Found

2007-03-08T21:29:00.000-07:00

I never expected to be shackled to my child more tightly in death than in his arduous brief life. I spent hours, days, weeks, and months staring at his tiny face, wishing him well, praying for his survival, willing him on. I devoted my very essence to his needs, while still trying to find a balance of parenting him, parenting Fric and Frac and of course, performing my wifely duties. (Snicker. By wifely duties I'm referring to folding his socks. Just so you know.)

I got lost along the way. I know this now. I recognized this immediately upon his death. Before I was even out of the hospital, while his body still lay on a gurney in the emergency room, I understood that I was screwed. The very identity I had created around this little boy had vanished in a puff of smoke, like a bad magician's trick. There has been no silence in my head since his death. No peace. His name and his memory bounces around inside my head, inside my soul, so loud that sometimes I fear there is no room for anything else.

I was aimless and lost. It was hard to feel anything for anyone. And that included my children. I knew that I loved them, but it was locked away, put in a box on a shelf so high up, that even on my tippy toes I couldn't reach it. I feared I would never be able to feel love for them again. So I overcompensated,and showered them with hugs, kisses and I love you's, even though I was vacant inside.

I shifted gears. My priority became seeing my kids through this nightmare, getting them past this crisis intact. I have no problem with spending inordinate amounts of money so my children could whine to a therapist how I was too sarcastic with them, how I never cooked anything but processed foods or canned goods, or how I accidentally walked out of the bathroom naked and gave them an eye full of pierced breasts and a tattooed ass. But dammit, there was no way those kids where going to whine about how their mother shut down and stopped functioning when their brother died.

I didn't want to become one of those mothers whose lives revolve around their dead kids. Who set up shrines to a memory while ignoring the living.

So I set aside my lack of emotion and just faked it till I made it. I yanked Fric and Frac through their emotional hell so fast their heads snapped back. And they survived. Kids are resilient. It wasn't long before they were talking about Shalebug and laughing more than crying, and generally just getting on my very last nerve.

That's not to say they don't miss their brother. Or ache for him. Or that their lives haven't been completely turned upside down because of the absence of his presence. Like me, like their father, they morphed into new little people, changed so completely through no fault of their own.

They are both more sombre. They are both more fatalistic. When they hear someone, especially a child, is sick or in the hospital, they no longer assume they will leave that hospital. In fact, we have had to work very hard to get them to stop presuming just because someone is ill, someone will die.

Every night they say goodnight to their Bug, and I can sometimes hear soft murmurs coming from their rooms. Behind their doors, in the dark of night, they spill their souls and tell their brother their darkest secrets. I asked them once why they did this, and they just shrugged. Worried, I asked if he ever talked back. I had sudden mental images of visiting my crazies in the nut house. Thankfully, they don't hear any ghosts, or voice of God talking back to them. But they both report feeling a closeness to him that they haven't felt since the day of his death, and that comforts them.

Like me, they fear the unknown. They want to know where he is, is he healed, will he remember us. I offer platitudes and warm thoughts while wondering the same things myself. They struggled with their faith and looked at their father and I for guidance.

It saddens me to know that who they were is lost forever. They carry a sadness with them that will always mark them. They have been through more tragedy, more hardship than most young children. They spent five years trying to understand why their brother suffered so, and they will spend the rest of their lives trying to understand why he died. That changes a person, especially a young child.

We spent these past 504 days mourning and coping and morphing into the people we have all become. I often wonder where our 'old' selves made off to, if they found new bodies to inhabit. I like the vision of four happy, little, redneck zombies wandering the world, looking for kooks to inhabit.

I can't say I'm not sad still. Not just because my baby is gone. But because my older babies lost their innocence when Bug's life was snuffed out with the quietest whisper of death. But I look at who they have turned into, and how they have handled themselves through it all; how they managed to help their momma stay sane, and I am so very proud of my kids. I just want to share them with the world. Shout their names from the highest mountain, and make the world aware of how remarkable these little people really are.

Despite me and my inept parenting.

It truly is a marvel.

I decided to share with you my babes. After all, I have posted pics of Bug, my Boo, even my backside, I figured it was only fair that I share the products of my womb, the fruits of my labour. (Pun absolutely intended!)

Think of it as an offering of proof that I am, indeed, a natural blonde.

Make A Wish....

2007-02-28T21:28:00.000-07:00

It's my birthday today. Well sort of. It's my first ever blogiversary. I feel so old. So distinguished. So respected. Snort. Well, not really, but I am marvelling that I have been plugging away at this little blog for so long. As most of you know, I started this blog as a means of therapy. A way to get through the day, and shine some light through that terrible blanket of depression and grief which had wrapped it's self around me and threatened never to let go. I didn't give much thought to what blogging would mean to me, other than it's purpose of keeping me busy, distracting me from my pain.

I didn't realize the community my blog would foster, or the embrace I would receive from the blogosphere. Who knew how powerful a virtual hug could be, how far a few kind words from a stranger could carry you in day. I didn't honestly think I would be blogging for this long. I simply thought I would power out, run out of stories, stop caring about my invisible friends, fade slowly into the cyberspace of the internet until I was nothing more than an old stale URL that nobody visited.

Perhaps that is my fate still, but for now, my blog, my blogging community are very much an important part of my day. I enjoy getting up, pushing my kids out of the house and cuddling up to the computer. I enjoy reading the antics of the daddy bloggers, and marvelling at the mommy bloggers who actually parent. It inspires me to stop ignoring my own children and to actually feed them non-processed foods.

(Well, up to a point - after all, who am I kidding? My love for Kraft dinner runs deep.)

I like tiptoeing through my bloglines, and leaving bits of myself through the interweb. Discovering a new blog is like finding a pair of jeans that don't give me muffin top or camel toe. It makes me want to shout from the roof tops with joy. Or run naked through a meadow of wild flowers, but I live in the arctic. The roof top idea is much easier.

I thought perhaps once my blog was made public that I would loose my zest for sharing. I would clam up and start censoring my thoughts, in a desperate bid to avoid embarrassment. But then I started thinking about all the ways I embarrass myself in my real life. How I talk too loud, bray like a donkey when told a good joke, play with my nose ring constantly, and suffer from that dreaded foot-in-mouth disease, and blogging hasn't much changed that. I have just given my friends, family and neighbours another opportunity to be embarrassed for me. Really, I like to think I'm providing a public service for those I love. I'm giving them someone to pity, make fun of and poke at, so they can avoid the misery of their own lives.

Because I am thoughtful like that.

On a serious note, blogging here on RM has helped fill the vacancy left in my soul when my youngest died. I honestly didn't know how I would survive his death, find my way through that loss. I felt nothing but pain. I knew I was still blessed with two other beautiful children, but I couldn't feel anything except a soul-wrenching hurt. There was no room for love, or humour or happiness. And that was unacceptable to me. I couldn't live like that and I didn't want my children to have a mom who was an empty shell of the person she used to be.

So I started remembering my Bug, and his beauty, and it helped to share him with the world. I made a point of picking out one point of the day, something little and finding the humour in it. To remind myself there was more to life than this fog of grief that had wrapped itself around my heart.

At first it was hard. But with each post, each day, it gets a little easier. I can't say I'm back yet, because I never will be. But I can comfortably tell you that in this past year I have grown into a new person, one who can look at her daughter and see the beauty shining through. I can feel my love for her once more, not just simply remember that I love her. I can see past my son's increasingly long hair and see through his resemblance to a dandelion puff and find humour in his desire to grow his hair long like his little brother's. I can feel something other than pain. And it feels good.

Don't get me wrong, dear internet. There is still not a moment that goes by that I don't wish I had a g-tube to plug in, or a string of saliva to wipe away. I miss those hesitant high fives, and that sweet spot on the soft curve of his neck. I still ache for him, probably always will. But as my daughter Fric, summed it up: It's hard to wish him back when he's in a better place. So I don't. I just merely send him kisses on the wings of the angels and ask him not to forget us.

And then I sit at my computer and tell you about the World's Greatest Dog, Ever. I write about Bug's siblings and his daddy, Boo. And I read about your lives to remember that I too, have a life. One that doesn't revolve around one little boy and his cement marker.

So thank you for that. There really are no words adequate enough to express my gratitude, or my love for all of you. Thanks for propping me up this past year and helping a girl out while she was down. A special thanks to Liz for being my first commenter ever. I have stalked you regularly since, and will continue to do so. (And not just cuz you were nice to me, but because you freaking ROCK!!!)

I am going to spend today, my bloggy birthday, doing what I love. Ignoring the dust bunnies (and my still-present mouse), sit on my ever-increasingly large bottom and reach out to touch someone.

Because I like it when you all touch me. I'm dirty that way.

Invisible Man

2007-01-17T21:27:00.000-07:00

I am a creature of habit. I find comfort in routine. Sure I love a good adventure, but nothing makes my heart trill more than the static minutiae of daily life. Every morning starts off the same: rise, let the dog out, go to the washroom, torture my children's retinas by turning on their bedroom lights with no warning while singing "Good morning Sunshine! Time to get up and earn Momma some money!" (I believe in early indoctrination...) and then I stumble to my coffee pot.

When ambrosia is in my cup and the delightful smell is wafting in my nose, I sit down at my computer and ignore my children arguing over who gets the last Poptart and who is stuck with plain old cornflakes. I begin to immerse myself in the delights of the blogland before me. Looking for quick hits of entertainment, enlightenment and occasionally, education.

I love my bloglines. I wish I had more time in the day to discover the vast unknown blogs out there. It boggles my mind to know there are so many undiscovered (by me) writers out there whom I could be gleaning useful tips from.

Occasionally when I read my blogs, I stumble upon something that makes me stop and think, something that makes me want to sit up and say "Wait! I have something to say too!!!" This happened to me last week when the incomparable Catherine wrote about her Wonderbaby's pox. With the sad images of that child staring back at me, I read how Her Bad Mother felt when people only saw WB's spots and not the beauty of her soul.

Of course, Catherine has a way with words that I envy. I secretly wish she would come west and adopt me and Nixon, the World's Greatest Dog. Ever. Think of the skills I could soak up from being around such brilliance on a daily basis. But alas, who would feed my kids?

I digress. This topic obviously touched my soul. For the first eight days after Shalebug was born I sat at his side and held vigil. Every movement he made, every breath he struggled to inhale, every drop of blood he lost to the NICU vampires, I watched. I would look at this baby, my baby and wonder why I felt nothing but fear. Maternal instinct, protection, but not the overwhelming love I knew with my other kids.

For eight days I wondered if he could see (he could, as we later found out) or if he could hear. (ABR results confirm ability to hear.) I wondered why when he cried he seemed so off. I couldn't place what was the matter with my son but I knew something wasn't quite right. Finally, after hours of staring at this child who lay there like a dead fish, it occurred to me that I had never seen him blink. I gently blew in his face to see if he would respond.

Nothing. Excited, I grabbed the nearest neonatologist and explained what I saw. Suddenly, there was a flurry of activity around my Bug. The geneticist was called and the neurologist and the neurosurgeon. They peppered me with a barrage of questions and then the neurologist performed the most scientific test I have ever witnessed in my life: he grabbed a tissue out of the nearest Kleenex box, rolled it into a stick-like shape and spit on the end of it to form a point on his tissue spear. He then jabbed it into my son's eye.

Nothing. No response. There was a chorus of "Aha's!" and a flurry of tests ordered and then they began patting themselves on the back and they started to walk away. "Wait!," I blurted out, confused by all the medical speak for I had yet to become fluent in doctor-ese. "What is it, what's the matter with him?"

The neurologist turned around and simply said he had Moebius syndrome. Great! I thought, finally we are making some head way. I naively thought this meant we would be on our way home soon. Let's treat it and get the hell out of dodge, I thought. I asked what this meant and he just said Bug would never smile or frown and then he walked away.

Mystery solved. As I stared at this stone faced little baby, it all began to make sense. He didn't respond to my voice or touch with all the usual physical cues a normal child would. There was no gassy smiles, no cute infant grimaces and no angry baby faces when he was pissed off.

Nothing but his big beautiful eyes staring back at me. Until, of course they rolled up into the back of his head. (His way of blinking.)

This was the start of Bug's journey and it wasn't even his hardest path to travel. But it was by far the most pressing issue we dealt with on a day to day basis. It wasn't until I was presented with a non-verbal child who did not have the ability to communicate with his face that I understood the importance of body language.

Family and friends were lost when it came to dealing with Bug. They tried hard and they wanted to love him, but his stone face made it difficult. They confused his laughing for crying and they couldn't see when he was working up to a full blown fit. He was easy to ignore. Because he was hard to read.

Added to his blank face, was the splints and casts, tubes and machines and a lovely little wheelchair, and our Bug was a walking advertisement for "Hey! Over here! Look at me and then pretend you don't see the handicapped child!" It was a tough lesson for me to learn, especially after priding myself on having the two most beautiful babies in the world.

Where did Bug fit in? At first I railed at God, at the injustice of it all. I would look at pictures of people with Moebius syndrome and (ignorantly) cry on my husband's shoulder. "They're so UGLY!" I couldn't believe that my child was sentenced to a life of disfigurement, paralysis, and worst yet, ugliness all because I cooked him wrong in utero.

I quickly swallowed this, but secretly I was glad Bug was a boy. Somehow it would have seemed so much worse to have a girl who had all of these problems. An ugly girl would have been too much for me to bear.

And then I met someone. The NICU was in the same hall as the Burn ICU. We shared a wait room. There was a man who had severe burns to all over his body. He used to pace this hallway up and down every morning. When I saw him, I shuddered and thought to myself what a monster he looked like. What a poor man, I thought. And then I would toddle off to go and pity myself and my infant son in our little world inside the NICU.

One day, after encountering this man every day for a week and every day quickly looking away so I wouldn't have to see his disfigurement and he wouldn't have to see my pity and fear, I brought Fric and Frac to see their brother. They were four and three years old, respectively. They saw this man pushing his i.v. pole and painfully shuffling along and they stopped dead in their tracks.

Fric, always the brave one, loudly asked "WHAT IS WRONG WITH HIM, MOMMY?" and Frac, my super-sensitive boy started to cry and cling to me, because he thought the man was a monster.

I was mortified. I met this man's eyes for the first time and felt ashamed. It suddenly dawned on me that this was a person trapped behind the scars and bandages. I saw his pain and for the first time, I saw him. His name was Frank, and he gently explained to my kids what had happened to him. Fric was satisfied and eager to see her brother, but Frac was still tightly wrapped around my legs, suspicious of this man-monster.

When I saw my stone faced angel that morning, clarity hit me. I realized there would always be people in the world who would only see his mask, his syndromes, his deformities. People who would only see the disability instead of his abilities. And there would always be people who would choose not to see him at all. Bug would be invisible to a large portion of our society. Simply because of how he looked or, in his case, didn't look.

I talked to Frank every day after that. I apologized for my reaction and explained why I was always around. We became hospital friends, clinging to the mutual bond we found in a puke green hospital corridor. One day Frank was not around and I didn't even notice.

But I never forgot Frank, or my reaction to him, or that of my kids. And later, every time I saw someone look away from me and my child, I thought of Frank. Every time Bug would form long strings of foamy drool that hanged from his mouth like a rabid St. Bernard and his eyes would roll into the back of his head and some soccer mom or old lady in the grocery line up would see it and then pretend not to see us, I thought of Frank.

Every time an old man or a child would see Bug's crooked, scarred feet or feeding tube and then stare at him like he was a bug under a microscope, Frank was shuffling along in the recesses of my mind and in the hallway of my heart.

It took me a long time to learn how to cope with having a disfigured, disabled son. My vanity never recovered. I went from angry to sarcastic, to feeling the need to explain with lengthy medical terms to simply nodding and smiling. I always wondered what Bug thought when I rambled on to some mother or child who simply remarked on his sunglasses.

Did he roll his eyes behind those shades because he had to, or because he just wanted me to shut the hell up? Did he notice people's pointing and staring or worse yet, their obvious attempts at ignoring him. Did he care? Did it hurt his heart the way it hurt mine? Did he take it personally the way I seem to? The way I still do?

One day I will ask him. Until then, I keep him and Frank close to my heart. My vanity no longer rests on that of my beautiful children or what the world thinks of me. I learned to see past the surface and look for the shining soul peering out. In every one.

Because sometimes that shine is hard to see. But it is never invisible. All you have to do is see the smile in their eyes to see that light. I know.

Happy Birthday Bug

2007-01-05T21:25:00.000-07:00

Yesterday was my Shalebug's sixth birthday. Which had me and the kids wondering, do they celebrate birthdays in heaven?

We decided that yes, they do, and we should too. So we bundled up and collected a few of our favorite nephews and headed to the movies.

Me and a group of ~~monkeys~~ kids, alone in a dark room with no adult supervision. It was a small miracle that no one was arrested, injured or found rocking in the corner with her arms wrapped around her body, muttering "What have I done???" over and over again.

If you ignore the fact that I spent more money on popcorn, Gobstoppers and soda than I did on groceries for my family, it was a pretty successful outing. One that I hope to repeat, say in a year, when time has blurred the images and my memory has receded.

But as I corralled my herd of six to ten year olds and tried to keep them from breaking bones or running into traffic on the way to the theatre, I wondered what my Bug was doing.

Was he dancing on healed and straightened feet?

Was he singing with the angels, finally able to find his voice that for so long had remained silent?

Was he laughing his ass off at the antics of his siblings and cousins while his mother tried to pretend she didn't know those crazy children in the movie theatre?

Was he thinking of me, the way I was thinking of him?

Happy birthday my beautiful boy, my moonbeam, my Bug. For four years, ten months, 17 days and 21 hours you were the light that lit my soul and shone upon this family. And now we have the blessings of remembering that light, that love even if we couldn't reach out and touch you and be slimed by your kisses.

You still light up this family. You just do it in a different, slime free way.

We haven't forgotten. I hope you haven't either.

I Just Wanted My Vagina Book...

2006-12-27T21:22:00.000-07:00

For most people there are four seasons. Spring, summer, autumn and winter. I, however, have five seasons to deal with. I like to call it the sorrow season. It begins every Oct 21 and runs until Jan. 5. This time of year has no spectacular display of autumn foliage, nor does it have breathtaking exhibition of wintery whiteness. No, this season is generally accompanied by used and crumpled tissues; empty kleenex boxes; and a big bulbous red nose. (Apparently, there are some seasonal similarities...)

This season of sorrow was hard. Not that I expected jolly laughs and good times. I honestly believed that getting through all the firsts would be the most difficult part of the grieving process; everything after would pale in comparison.

I was wrong. What I neglected to take into account was that through a lot of those so called "firsts", I was still in shock. My son was only dead for two months when I had to face our first Christmas without him. I had barely processed the fact that he was gone, let alone what a lifetime of Christmas seasons without him would mean.

Shock is a grieving mom's best friend. It can numb the sharpest of pains like nothing else.

The only shock I had this year to to insulate my pain was when I touched a shorted out wire on a string of Christmas lights this winter. And it didn't help dull my pain or lessen my memory. It did however, get me to curse like a seasoned sailor who just picked up a cross-dressing tart only to discover....

I wasn't ready for the onslaught of emotions that began bombarding me from the anniversary date until now. I had naively and somewhat stupidly thought that I had done the hard part and survived.

Turns out, the hard part keeps on coming. It never really ends. It's like that annoying pink rabbit banging on that freaking drum to advertise batteries. It just never stops banging away at my heart, at my head.

This year was harder than last year. Last year people made excuses for my shabby appearance, my lack of thoughtful gifts, my inability to articulate an intelligent thought. After all, I was grieving. I had just lost my baby boy. This year, it was as if a spot light was turned on me and people were examining me to see if I survived my year in purgatory. Apparently, I didn't receive a passing grade. This year people expected the T from the past to make a long awaited appearance. They thought that she would come back in fine style, shake off the dust from being trapped in a grieving box for so long and start entertaining the masses. They were disappointed to discover that she no longer exists.

That T, that piece of me is gone. Replaced by a more sober, sadder version of myself. This T no longer cares if the packages are deliciously wrapped and rival Martha Stewart's. This T no longer cares if Fric has a hole in her stocking or if Frac's hair is cut. This T realizes the only value of Christmas is the value you create by being together and appreciating the small moments togetherness creates.

The old T was buried with her son. She no longer exists. It's a hard lesson for those who love me. It's a hard lesson for me. I resent having had to change. I liked myself, who I was before death reached in and snatched the light from my soul.

But I like who I am now too. I have walked a path no person should have to. I have experienced a pain so severe, so debilitating, no human should survive. But I did. I survived, am surviving. I may have a few more earrings and body art to show for it, but I am relatively intact.

I discovered a strength, a resilience I never knew was part of me. And I kept my funny bone, even when my heart was ripped from my body and buried with my Bug.

All in all, this Christmas was good. Hard, but good. I kicked my hubs ass several times around the board games, I watched my children's faces light up with excitement and wonderment and I talked with my Bug through out it all. He was as much a part of this Christmas now as when he was alive. Minus the tube feedings and shitty diapers. There was a bad moment, when my well-meaning mother-in-law gave me my present. To every other adult female in the family she gave various vagina books; Your Vagina and Menopause, Your Vagina and It's Health, How to Be an Effective Leader with a Vagina; I was looking forward to my vagina book. Perhaps I'd get the How to Grieve with a Vagina, or How to Watch What You Say When You Have a Vagina.

Sadly there was no vagina book for me. Instead there were three lovely picture frames. It was a thoughtful gift, but it only served to remind me that while I replace the pictures in two of the frames, one picture frame will be frozen in time, collecting dust. Forever frozen while everyone moves on.

Every one but me.

I don't believe I will every truly move on. Part of me will linger with my boy until the day he is in my arms once more. Part of me doesn't know how to let go, forget a life so beautiful it hurts to remember it. Part of me never wants to.

Because that life, that boy, is part of me, a part of this family I created. It is a part I cherish, love and admire. And death do us part, it still exists. It always will. Some years it may be more dusty, others it may be more vibrant, but every ~~year~~ day it is always present.

I am looking forward to this season of sorrow coming to an end. After the new year, when the tree is back in storage, the ornaments carefully packed away and the house once more swept clean of Christmas merriment, I might be able to breathe deeply again, without this pain in my chest. I just have to get through New Year's. And his sixth birthday. I will survive. I will cope. I may even grow.

If I don't think too hard of who he would have been if life had worked out just a bit differently.

Stockings

2006-12-06T21:20:00.000-07:00

I grew up loving the Christmas season. We weren't particularly religious folk; for us, the Christmas pageant was just an opportunity to visit with our friends and snitch as many cookies from the cookie plate as possible.

But my mom did up Christmas the way Martha Stewart can fold a linen napkin. With flare. Every year was a competition within herself to see if she could out do the year before. Could she toss more tinsel on an already over-burdened tree? Could she squeeze in another Santa figurine on the coffee table? Oh look, there is approximately two square inches of space that haven't been decorated. For the entire month of December, no matter what our family faults may be, I was always proud to be a part of this family.

Because we always had the best decorated house in town. Inside and out. And my mom was a firm believer in Christmas baking. Not only did we have the prettiest tree, but an ample amount of freshly baked goodies to consume while we lay in the dark and watch the twinkle of our tannenbaum.

Once I grew up and had kids of my own, it was a mad rush to replicate the memories of my Christmas yore. Boo didn't understand my desire to deck the halls; in his household they had a pathetic little Charlie Brown tree with six ornaments on it and one string of lights, most of which were burnt out. They didn't even have stockings. Gasp! My darling hubs would like to point out that Christmas to them was more than just tinsel and lights. It had religious and family meaning beyond how big the Christmas tree was, or if there was a talking Santa figurine.

Whatever. My house rocked. His didn't.

Eventually, I caught up with my mom. My house is a magical place at Christmas time. I tossed the tinsel in favor of garland, traded in the Santas for some beautiful nativity scenes, but I know how to deck these halls. And my kids love it. And the best part of all was watching the Bug's face light up when the Christmas tree was turned on. He didn't understand the fuss, or the muss. But he knew something was up. And every decoration I had was an opportunity for therapy for him. Touching the tree, feeling the prickles. Holding the smooth, cold glass balls in his small chubby little hands. Tasting the peppermint across his wet lips, from the candy cane I would swipe across his tongue.

All of it was so new and fresh for him, every year. And he loved it. While Fric and Frac pranced with excitement, barely able to contain their giddy glee at the thought of ripping into the presents, Shalebug thoughtfully stared at the twinkling lights, mesmerized by some vision only he could see.

So it became a pleasure to decorate every year. To see if I could outdo myself and my mother. I was building the excitement for Fric and Frac and I was providing an opportunity for Bug to reach out and talk with his angels. Every tupperware box Boo dragged in, bitching and moaning, was full of anticipation and excitement; filled with hope and promise.

It's not the same this year. Not for me, not for Fric and Frac. Sure, they are greedy little kids, anxiously awaiting the arrival of promised goodies for a year of half-assed good behavior. But the twinkle of the tree has lost it's sparkle. The water globes are no longer tiny little worlds of mystery, but just glass balls that no longer get drenched with drooly little fingers. The candy canes are now just candy to be forgotten on the tree, collecting dust. How does a person recapture the spirit of Christmas when the family angel is now on top of the tree, instead of in our arms?

How does a mother put on a happy face, decorate her home, bake her cookies, wrap her gifts, knowing that one of her children won't ever again stare at the glittery glow of her pretty tree?

So I carry on. I push through the throng of crazy Christmas shoppers, ignore the carols being sung on every corner and pretend nothing is wrong.

I bake, and I decorate. I tell silly jokes and I encourage the kids to dream of sugar plums and dancing fairies.

And I will watch the anticipation of the season build it's momentum in their tiny hearts, until they are busting at the seams with excitement on Christmas morning.

I will watch them tear into the paper-wrapped packages, and discard the bows I have lovingly placed on all the presents. I will watch their faces for signs of disappointment or glee when they discover what's inside their parcels.

I will play Christmas music and read the story of the birth of Christ, and try to carry on.

All the while ignoring the empty stocking that remains, mocking me, reminding me of what I lost. And what heaven gained.

After No Tomorrows

2006-10-19T21:18:00.000-06:00

The last good memory I have of my son, was my being too damn lazy to get off my arse and put him to bed. So, instead of being a good mommy, I grabbed him and cuddled him on the couch for an extra half hour. He didn't fight it as he normally would, instead, he just burrowed in for more. When Boo came passing through the living room, I mentioned it was past Bug's bed time and insinuated he was a lousy father for allowing his son to stay up so late. At 8:29 p.m. my husband reached into my arms and took my son from me, as I smothered him with kisses.

After that, all my memories are akin to those from a cheap dimestore horror novel. And hours later, the Redneck mommy was born.

I didn't know what to post this weekend, it being the first anniversary since his passing. I didn't even know if I wanted to say anything at all. After all, how many times can you write you miss your son before even you get the point.

Enough! I get it! I miss him! Move on already!

But as I've discovered, moving on is not always so easy. This past year has been torturous, hard and somewhat miraculous. I have discovered more about myself and my family than I have ever known before.

Some of it good, a lot of it not. What amazes me, is the unrelenting love I still carry for my Shalebug. Shale was my life while he was here, and somehow, in death he has managed to shape every decision, every choice I have made since then. Little bugger. Of course, I needed an outlet to vent my grief, anguish and ultimately, love. So I bought a computer. Thank you, my most beautiful Mac baby, I love you. And I started surfing the net, looking for other parents who have been through what I have been through. I didn't find many. But what I found instead, was what ultimately saved me.

I found you.

At first, I lurked. Then I started commenting. And it wasn't long before I launched Redneck mommy. With every comment, every post, I healed. I grew stronger. Yes, I stumbled this summer, but who wouldn't? But I've picked up my pieces, my life and carried on.

And that is what I've learned this year. That I can do it. I am invincible. I am Supermom. (Just kidding. If anyone is still reading this drivel, I apologize.) I've learned I am a lot stronger than I realized and that love doesn't die just because your child does.

Don't get me wrong, I still panic at the thought of living to a ripe old age and not seeing my Bug again. What if I don't remember him? Worse, what if he doesn't remember me? What if, what if, what if. I've learned there is no such thing as a what if. There are only what are's.

I ache at the thought of not hearing his laughter ring out. Of not being slobbered on, shit on or puked on. But thankfully, Nixon, the World's Greatest Dog. Ever, stepped in to help out in that department. My kids, Fric and Frac, they've banded together like merry little thieves and wrapped themselves tighter around my heart.

All this love and missing has done one thing: expanded my heart. I want to love the whole damn world. ( Them's some good happy pills you've prescribed, Mr. Small Town Doctor.) But seeing as how I'm too damn poor to support the whole world, I'll settle for one. After all, I am not Madge or Brangelina.

Ultimately, that's my tribute to my son. Not the tattoos, the piercings or the posts. Just the simple ability of being able to love harder, longer and larger. That's what his life, death and the year since has brought.

So this Oct. 21st, I urge you all, to grab hold of your kids and drool all over them. They might fight you, squirm and wiggle. The older kids might roll their eyeballs and think you've lost what little of your mind you have left, but do it any ways.

Because that's another thing I have learned.

Sometimes, there are no tomorrows. Only the moments at hand. Enjoy them.

Crossroads and Choices

2006-09-18T21:14:00.000-06:00

Before our Shalebug flew the coop and grew his angel wings, he was becoming quite the little character. He could hobble about on flat surfaces, he could crawl quick as you could blink an eye and he was an expert at giving high fives. After years of watching him be nothing more than an eating and pooping baby machine, it was thrilling to watch him finally "get" things. As Boo said, it was like watching someone turn on a light switch.

That is not to say he was learning how to tie his own shoelaces or suddenly knew his ABC's. Cripes, he still hadn't uttered a word in his almost five years and I was fairly sure he never would. He couldn't put the pieces of a baby puzzle in the holes and I shudder to think of how hard it would have been to hold a pencil. All that aside, he was learning, in leaps and bounds.

And it was fun to watch. Just like it was when Fric and Frac learned how to walk and talk. Or finally master toilet training. (All though, we still haven't managed to not pee all over the freaking toilet. And it has been nine years, dear internet. That's a lot of pee to be wiping up.)

Somehow, with the Shalebug, the rewards were all the more sweeter. I think it was because I had been around this block before. I was older and wiser and more aware. And I saw my boy struggle to accomplish the very same things his siblings mastered with nary a thought. t was a hard fought battle, and victory was often denied to my boy. But when he mastered something, the world was an amazing, brighter place. For all of us.

We miss that. Not just me, but his father, and his brother and sister. We miss the joy we felt when he accomplished a small task. We miss him.

Part of the reason I took the summer off blogging was to find me. Suddenly, at 30, I found myself at a crossroads, with no visible path. All of a sudden the world was my oyster, no longer confined by the constraints of having a handicapped child. Suddenly, I was free to leave the kids, and just hire the 15 year old neighbor to babysit. I didn't have to worry about car seats and wheelchairs and feeding tubes. Medication schedules or teacher aides.

I could get a job without worrying about finding a daycare to suit my child. I could go back to school. I could do anything - except take care of my Shalebug. Which is the one thing I want most in the world.

It didn't bother me that one day I would have to let him go, perhaps put him in an adult facility. I couldn't predict the future, and I refused to imagine the worst case scenario. I refused to bind him by my imagination. Nor was I living behind rose colored glasses. I fully accepted that I would be chained to a grown up child for the rest of my days, as would his siblings.

But none of this mattered, because of the love we all felt for Bug. It was, and still is, staggering.

Leaving me at this crossroad, scratching my head, and wondering what the hell am I going to do with my life?

So, here in my piece of paradise, I have watched Fric and Frac grow and develop. Laugh, cry and argue. I have sat and spent hours researching jobs, careers, educational paths. I have been offered a reporting position at the local television news station. My career as a professional gardener has flourished into what could be a very lucrative career if I choose. The school where Bug went to has offered me an aide position.

I have options. I have the finances to pursue those options. I have more choices than I could shake a stick at. And the only thing that interests me is being a mommy.

But getting preggers again is an option that can't be placed back on the table. Which leaves adoption.

Many hours of soul searching and nose sniffling have been devoted to the idea. Could we do it? Is it fair to Fric and Frac? Would the rest of the family accept a child that didn't have albino white hair and sky blue eyes? It was a hard battle for Boo and I, to have the extended family accept Bug. Could we ask them to do it again, with a child that had none of their blood running through their veins?

Did we want to?

The answer is simply, yes.

So we have started the adoption proceedings. And our application is being fast tracked because we have applied for a special needs child. None of those healthy kids for us. No sirree. We only want the broken ones, Ma'am.

So I, the Redneck Mommy, who am not a redneck at all, am expecting my fourth child. I'm ~~scared~~ terrified of what the future holds for us. But I haven't been this exhilarated in, well, ever.

We have faced our critics, and been embraced by our supporters. Sad to say, the numbers are even on both sides.

No, we are not trying to replace our dead son. Yes, I'm sure I want another handicapped child.

Why? Why not? I counter. Because the love Bug gave us, and the skills he taught us was a gift I want to be able to share with the world. The strength we gained as a family unit has cemented our bonds of love. It has made us all into better people. He shaped his siblings into very special kids. I don't want to spend the rest of my life just remembering those skills.

I want to use them. As a tribute to my boy, who was the strongest person I knew. He taught us to how to love.

Thank you, Skjel. Mommy loves you.

Waiting for my Door To Open

2006-05-24T19:39:00.000-06:00

It took me a week to recover from the brutality of Mother's day. I anticipated the day would be hard, but never did I anticipate how devastated I would be through out the day. Or how my family would react. The day started off nice enough, that is until Fric and Frac gave me my well-deserved presents. When I opened my son's card and read what he wrote, I knew then that I would not be in control of my grief for the remainder of the day. Frac wrote a poem, an ode really, of all the reasons he loved me. Apparently he is fond of my cooking (you gotta love Kraft dinner and Chef Boy-R-dee), my cleaning (the dust bunnies are the newest members of our family) and my yellow streaky hair. (Might be time to find a new hairdresser.) But the part that made me misty eyed was "I love my mommy because she tried to keep my brother alive."

**Sniff.**

I wish that I was further along in this grief process. I wish my kids never had to go through this. While I'm wishing, I wish for my Bug... However, as reality is banging in my ear, I know I need to stop wishing. Soldier on, and face the harsh light of day.

I read somewhere that around the six month mark the grieving process gets really intense. I couldn't fathom that. How could it be any more intense than the searing pain that was ripping my soul apart? But as I am discovering, it isn't the grief that is getting more intense. It's the sadness. Sadness due to the constant grieving. Sadness due to coping with a new reality, forming a new identity every day. Sadness that comes from family members and friends who no longer remember you are grieving, who no longer mourn the loss of the boy who was. Sadness due to chronic missing my child, my friend.

I have to believe everything happens for a reason. The reason for Bug's birth and subsequent handicaps. The reason for his and our struggles to cope with his life and now, the reason for his death. And I firmly believe that with one door closing another door opens.

So I am sitting here, waiting for my door to open. While missing my bug.

A Mother Is Made

2006-05-12T08:20:00.000-06:00

Mother's Day is around the corner. And as I sifted through the cards at Hallmark, looking for the appropriate card for my mother and my MIL, I got to thinking what it meant to be a mom myself. Obviously, I know what it means to be a mother. Gestating life inside me and then squeezing the ~~little~~ overgrown buggers out of my vajayjay is not something a woman would easily forget. No, I am referring to the reflection of what it means to me to be a mother.

Before my youngest was born, I wore the identity of young mother to two-so-close-in-age-and-size-they-could-be-twins children. I wore this badge proudly. I grew up thinking the only thing I wanted to be when I grew up was successful, and being a parent was not my idea of success. But then procreation happened, and I found out my definition for success changed with the birth of my daughter. Success now meant happy children. And I loved every minute of it.

Then my Shalebug came along. After two cute, so small-you-could-hardly-tell-I-was-pregnant bellies, I suddenly had this gigantic watermelon strapped to my chest. It was the first sign of what was to come. When he arrived, suddenly my world turned upside down. Having a child born handicapped will make you question everything. My hubs and I were shocked, and we grieved for the loss of our imaginary son. We grieved for the limitations our new son faced. We just plain ole grieved. But for the sake of my new son (and my other children) we got over our grief and moved on with the task of living. And redefining what it meant to be a successful mom.

Success now meant being the mother to two beautiful, healthy boogers and one very special bug. It meant soccer practices and tube feedings. Parent teacher interviews and specialist appointments. It meant school plays and hospital stays. And somehow, this worked. Our family flourished and grew. And my idea of what it meant to be a mother just expanded every day with the love I felt for all of my kids.

People who didn't know my Shalebug were uncomfortable with him. They felt sorry for us. I raged about this. Ignorant bastards, I'd call them. But as time went on, it was me who started feeling sorry for them. They had no idea of the capacity of love and strength a person with a disability carries with them every day, in addition to their medical problems. Bug taught all of us to open our minds and our hearts, in a way that I never would have considered before he was born.

Would I have chose to have a disabled child? Truthfully, no. I would have been freaked out and scared at the idea. But because I had no choice, it was the best thing to ever happen to me. Bar none. I used to call myself a mom before he was born, but I don't think I was. It was more like a mom-in-waiting. And the gift of mothering all three of those beauties is what made me a mother.

Now that he is gone, I feel this empty hole, that rages to be filled. And the gap in our family is felt by every member. But I am lucky because I had him in the first place. My children had an amazing experience learning how to be siblings to someone who needed a little extra love. While I would wish him back in a heart beat, I will carry the lessons and the love he gave me always.

Being a mother means (to me) giving away a piece of your heart, knowing you can't ever have it back. It means trusting yourself to put your kids ahead of your needs and wants and to find peace and solace in their love. Being a mother now means that if the unthinkable happens, you will be the rock that the other's cling to, the one to murmur sweet nothings in the middle of the scary night. The one who cuts the flowers to lay at the base of the granite stone.

It also means remembering to smile and untangle hair knots, pump up bicycle tires and attend school plays. While wiping away tears that fall softly when an angelboy flutters about in my heart.

So thank you dear Skjel, my Shalebug. Because you made me into the mother I am. And that is the greatest mother's day gift of all.

Bug Bites

2006-05-06T09:19:00.000-06:00

I was bit by my first mosquito of the season yesterday. As I sat and scratched it, worrying whether I had just contracted West Nile virus or Malaria, I thought of Bug. He had the fairest lily white skin of all my children. The skin on his legs was rough, and constantly dry. The skin on his fore arms was dry as well. And his fingers sported great big thick callosuses from being in his mouth all the time. But everywhere else his skin was soft and smooth.

Every year, he was skeeter bait. My poor boy couldn't fight the bugs off himself, and we had a terrible time with lotion. So, inevitably, he came away from his foray outdoors with more than his share of bug bites. And a mosquito bite on Shalebug would last for weeks. His beautiful skin just had a terrible time clearing up after being vandalised by those bastards.

As I scratch and whine about the itching, I know that Bug won't be bit again. Never again. And part of me is soooooo sad about that, but part of me is more like "Ha! Take that you stupid skeeters! I finally found a repellent that works! Au du Death!" Perhaps I need to up my therapy time...

But I think back to that night, how it was like any other night, how up until the very end, I never, not once, thought my son was dying. That my time with him was finite and running out quickly. Like a car accident that you don't see coming. And then WHAM! it hits. And everything changes. I am grappling with how mortal we are. I never gave it much thought before. I knew we died, have seen people die, have been to their funerals. I understood what it means to miss someone and never be able to talk to them again. I just never put it in respect with myself or that of my family.

As I watch Fric and Frac bounce on the trampoline and strap on their bike helmets, I wonder now, is this the last thing they will do? Will there be a tomorrow for any of us? And I resent these thoughts. But at the same time, they are golden, for they make me take the time to stop and enjoy the moment; to really live. I thought I was doing that before, and maybe I was, but now I am extremely aware of my minutes on Earth. And my family's time with me. Because you never know when Death is knocking on your door.

So, I will sit and scratch my skeeter bites. And try to enjoy doing it. But I am still going to buy some super strong repellent.

Hokey-Pokey

2006-04-29T10:17:00.000-06:00

I just figured out that grief is sort of like doing the Hokey-Pokey dance.

You put your left foot in, you put your left foot out...

Sometimes I put my foot in the grief and sometimes I am taking it out. This week, I seem to have thrown my whole body into this dance and have shaken all about. You see, dear internet, this week has been a week of freakin' hard firsts. And the surprising part is, I never anticipated these firsts, didn't prepare for them, didn't see them coming at me like a steam engine that jumped the tracks.

Every spring since my kids could walk, they have been enrolled in soccer. That's right, everyone, I am a soccer mom. Happy to oblige too. Since Shalebug has been around that means not only do I drag my sorry butt to the fields to watch six year olds stand around and pull their jersey's over their heads, but I dragged my angel as well.

Where we would both sit there and freeze our asses off. Being the good mom that I am, I used to stick my hands in his armpits to keep my paws toasty. And him being the good boy he was, he let me.

He would giggle when the ball rolled our way. He would cry when I got excited and started to cheer on a player. (I'm an equal-opportunity mom, I'll cheer for any kid who manages to get the ball.) He would get mad when the local train came rolling down the track and toot it's horn.

I didn't anticipate the loneliness I would feel, sitting there on the field with no body to keep my lap warm. No armpits to stick my fingers into. When the train rushed passed and whistled, I braced for the screaming. Except there was none. No one noticed the train but me. No one giggled when the ball rolled past my chair. No one squirmed to get free and stand, holding on to my chair.

It hit me like a ton of bricks. Soccer is just not the same. So here I am, stuck again in the mire of grief and sadness. Doing the hokey-pokey, just waiting to turn myself around.

What Six Months has Brought

2006-04-23T10:10:00.000-06:00

When I started blogging this blog was my priority. But with each entry it became less and less important to tell the world how much I miss my son. My other blog brought laughter back into my life so therefore, it quickly grew and gained importance. This blog is now my touching post, where I pop in occasionally, just to remind myself the new reality that I find myself living in.

Don't misunderstand, I haven't forgotten my son, or my pain. In fact, quite the opposite. Friday the 21st was the six month mark since Bug's passing. And I had planned this huge post about all the things that have happened in these past six months. But the more I thought about it, the less has happened. I still grieve everyday for my son. I still cry every night. I still pray to God that my son is safe in Jesus's arms and for the Lord to lessen our pain. I still can't empty his clothing drawers or go into my son's bedroom when it is dark. I can look at about 100 familiar photos of Shalebug and feel no pain. But if I look at any others with him in it, I fall into a pain that steals my breath away. And most importantly, I still love my son with the same ferocity I did the day he died.

So not a lot has changed. The startling truth is our lives have soldiered on without my bundle of love. His brother and sister still talk to him when they go to sleep, but they no longer cry for him. His grandparents still miss him, but they've moved on to focus on the kids who live. His aunts, uncles and cousins no longer talk about him, he is just a picture in their photo albums. All of these people loved Bug, but his loss hasn't altered who they are.

But my husband and I have morphed into two different people. The people we were before he died, have slowly withered away. That's not to say there aren't remnants and reminders of who we were. But our personalities have shifted, altered, just slightly enough that it is only noticeable to those who were really close with us.

How can it not? How does one carry this burden of pain everyday, and not change? For every smile we make, there are more tears to be shed. Every happy and joyous occasion is marred by the reminder of the little guy who is not here to share in the event. The six month mark brings with it a reminder of what I have lost and what I have gained. I lost my son and gained a sobriety to my personality that never existed before. And I can't see that changing. Because I can't figure out how to stop loving the little guy and stop missing him.

Perhaps if his death was expected or even explained. Maybe then it wouldn't hurt so much. Or would be easier to let go of. But I am still reeling by the suddenness of this loss and I find myself still floundering. Who is to say?

Six months have passed. I lost my son. But I retained a husband, rediscovered the joy of my other two kids, and kept my sanity. I got a job (which will be ending in a month,) and my new puppy arrives May 26. I found clarity with the friends and family who have stuck by me and peace with the ones who had to let me go. A new nephew joined our clan. We have managed to smile and laugh throughout, while remembering the boy who was.

In the end, I guess things have changed. Except for how much I love you Bug. That never will.

Easter blues

2006-04-16T10:17:00.000-06:00

This time last year I was shushing Fric and Frac. I was holding your hands and helping you struggle your way upright. I helped you waddle around the house with you hanging on to my fingers and my back stooped over. I honestly thought I would never stand up straight again. I led you into the bathroom and there in the tub, was a beautiful basket. Inside it had a big ball, which your brother and sister still toss around the house and sit on. There was no candy, but an assortment of baby toys I prayed would interest you.
Turns out the toys didn't catch your eye, but the big blue ball did. You sat and balanced on that ball all day. With a little help from mom and dad of course. You would roll the ball and try to kiss it. I was thrilled you found something you liked but I confess to being concerned about the germs you were slobbering off it.

We then tried dyeing eggs together. You liked the shape and feel of the eggs and you didn't seem to mind getting your fingers wet with the dye. You were fascinated by the colors your fingers were stained. You sat and stared at your hands for minutes. Trippy.

Off to Grandma's we went, and there you blew bubbles while Fric and Frac rode their bikes. I held you on my lap at supper and let you drool over my mashed potatoes. When it was time for dessert you enjoyed your ice cream. And grossed everyone else out.

This Easter is marred by your memory. No dyeing eggs, no shushing your siblings. It's pretty quiet around here. We still had the egg and basket hunt, but it wasn't the same because I wasn't stooped over. Easter supper is not going to be the same with out you to slobber into my food.

But one thing will be the same, and that will be me, outside blowing bubbles. If you see them Shalebug, they're for you. Sent with love from a mommy who misses you more each day.

Enter Mr. Sandman

2006-04-13T22:15:00.000-06:00

Next Friday will have meant six months have passed since Shalebug died. Six long months. How is it possible that my life can have continued for half of a year and not once have I kissed my boy. Or changed his bum. Or plugged in his feed. Bathed him. Held him. I miss everything. I miss him.

The one thing that still takes me by surprise is how much I still love him. As if he never died. To me, it still feels like he is here and we are only separated. Just waiting to be reunited. Let me tell you something, if I wasn't a Christian before Bug died, I surely would be one now. Because with out the hope, the possibility of reuniting with him, my life is bleak. The pain too overwhelming.

I am feeling marginally better now. Acceptance is slowly fighting it's way into my world. Laughter is easier, loving is better. I am learning to deal a bit better with my raw emotions. But I still welcome sleep. Not for an escape, but rather, because I look forward to seeing my boy in my dreams. There, I can feel him, smell him, taste him. For a few short minutes, he is with me. And all is right with the world. The only down side is how much it hurts to wake up and leave him all over again.

Easter is here. And I will celebrate with great joy. Because it means my boy and I will be together again. Until then, we have a date in my dreams.

Springing through the firsts

2006-04-06T07:56:00.000-06:00

It rained here yesterday, the first time since Bug passed. The sounds of the water hitting the glass pane of my windows was melodic; soothing. I wondered, as I sat there watching the water drip down the window, if it really is tears from heaven, like I used to tell my kids.

I have been grieving hard these past few days. Spring has sprung and with it brings a whole new set of firsts to deal with. The first time I go down to the garden, sit in the swing, go for a walk. I haven't done any of this without my boy and I am not looking forward to the rush of emotion when I do decide to tackle these firsts. Funny, my property spans more than 20 acres and I have used less than .1 of them since Shalebug died. It didn't occur to me to leave the house. God knows how long it took me finally feel comfortable in my home with the gaping hole Bug's abscence created. I never thought I wouldn't love my yard anymore.

So, as I have learned, I will soldier on. Trudge through these firsts, face my fire-breathing dragon. Time will numb this too. And I hope I will be able to push past the pain and rediscover the joy of my yard and remember sweet memories of Shalebug and butterflies.

For Lyle

2006-04-03T09:37:00.000-06:00

I fell in love with Shalebug's pediatrician the first time we met. Well, maybe not love, but strong like. Lyle is a shorter man, but well built. He looks as if he could bench press an ox. If it wasn't for his Donald Trump hairstyle, I would have seriously considered trading Boo in. But Lyle's muscles weren't the reason I liked him immediately. When we first met, Bug was four weeks old and the biggest baby in the N.I.C.U. His size made his health problems deceptive. Imagine a Giant among three and four pound babies. Some of the nurses would down play his health because of his size. It was frustrating for me as a mom who longed to take her baby home. If he wasn't that sick, why was he there? Lyle didn't downplay Bug's health, nor did he beat around the bush.

Within the first few minutes of our meeting, he explained Bug's handicaps in a way no one else would dare. He told us Bug's chances for surviving until he was aged two were less than stellar. He told us to get used to the g-tube, it wasn't going away. He told me not to expect to hear my baby say "I love you" because he wouldn't be able to. He explained how Bug would have cognitive impairments. How Bug wouldn't walk very well, or may be not ever. Within ten minutes he told us everything he believed Shalebug would never accomplish. And then he told me to decide there on the spot if I could handle this. Because if there was a shred of doubt, he would place the baby in foster care until I got my head on straight. I know, dear internet, I have made him sound unbelievably cold. And he was. But the moment I invited him into my son's life he became my son's protector and his second biggest advocate.

I stuttered and stammered for a millisecond, got my back up, and told him to fuck off. Really I did. He smiled, and said he approved. He just wanted to see if the two of us were a good fit. And we were. Are. I have no doubt at all that if he thought my hubs and I couldn't handle Bug he would have brought the authorities down on our heads. I have seen him do it for other children.

But after that moment, he stopped telling me what Shalebug couldn't, wouldn't do, and started telling me what he would. He told me Bug would be the best thing to ever happen to our family. He was right. He told us Shalebug would love us like no one else in the world and he was right. He told us to ignore all the doctors and to just listen to Bug. If we loved Bug enough, Bug would be enough. And he was right. Bug proved Lyle wrong time and again, except for his speech. And if we had more time, I'm sure strides would have been made.

Shalebug had to see Lyle every three to four weeks. Primarily to monitor his growth, and to make sure his lungs weren't filling up with secretions. Being a tube fed kid made it difficult for the little guy to pack on the weight. So he was my skinny minny. He was not short, but not tall either. Every time Bug and I went to Lyle's office, it was like visiting a friend. He held my hand and told me over and over again I was a good mommy even if Shalebug wasn't progressing as quickly as I had hoped.

The only thing as hard as telling my family Shale died was meeting Lyle's eyes when he walked into the room that night. My shattered heart splintered even more seeing the pain on Lyle's face. Every one was in a state of shock. It wasn't supposed to happen this way. At all, really. Lyle sobbed and I sat there and consoled him. I never doubted his love for Bug, but I was sorry to have proof of it now.

I had to go see Lyle recently, for Fric. Hugs and tears abounded. He brought me into his office and showed me his memorial he has for patients who have passed. A wall of over 200 dead children. And in the middle of it is an 8x10 photo of my Bug. The biggest pic on the board. The fact that Lyle cares about his patients even when they've passed, touches my heart like nothing else.

Lyle was the only person, other than Bug's parents, who could see the spark in Bug's blue eyes. Who could see his value immediately at birth. Who saw past the face of stone and made Bug (and me) giggle time and again. Thank you Lyle. I love you.

A woman's perogative

2006-04-01T17:06:00.000-07:00

I have been struggling these past few days with my grief. I haven't been overwhelmed by it, don't worry, quite the opposite dear internet. In fact, I have been underwhelmed. I seem to have a handle on it lately. Probably because I am too busy to deal with it, having children running amok in my home, working my butt off in a greenhouse, but perhaps just because I am truly able to cope with the loss lately. Which bothers me. Am I leaving him behind? Does this mean I am going to forget him, forget his value to our family in ten years? I feel guilty for not being grief bound lately. Lord have mercy, I am losing my mind. Such a woman, always changing her mind....

Dead Kids Don't Count

2006-03-29T08:07:00.000-07:00

I have been in a good place with my grief lately. Which is why I haven't felt the need to post lately. I mean how many times can I whine about missing my Bug before even I get sick of it? However, like an elastic band stretched too taut, my grief snapped back. Apparently, I haven't been paying it enough attention of late. Like I forgot to water my Chia Pet.

So I am here to say I am sad. Still. It really chaps my ass that I feel this way. I don't like wallowing, but there is just no way around the fact that my boy died. Is gone. And I have to trudge forward in the quiet hope that one day in our aftermath we will be reunited. It just doesn't seem enough. I am jealous of all those parents who still have their kids. I am angry with those parents who whine to me about their kids. I am completely, utterly, undeniably losing my mind with grief. At least today. Tomorrow, maybe my grief and I will be good buddies again.

I know what is exacerbating my emotions. My sister's upcoming delivery of "the child who will save this family." Or so my mother likes to think. She has completely replaced any feelings of grief with the excitement of the arrival of Mortimer, or whatever the heck it's name will be. This frustrates me, just because I haven't been able to replace my feelings. I understand why she has moved on. I just don't like it. She has effectively replaced the dead baby with a live one. Maybe I need to look into that. Hmm...

Mommy dearest, has informed me and my honey that it is time to move on. To support my sister in her life as a single mother. That it is time to fold our memories away and focus on this new baby. But as I hate to point out, this new baby is not my baby. I will get to see it once every few weeks if I am lucky. I do live in the sticks after all. And how does the arrival of new life diminish the loss of old life?

I have bitter feelings about this, my mom and I don't get along very well and might never. But it pisses me off that she accuses me on not moving on because I am unwilling to forget the inconvenient fact that I had, have three children. It is like accusing a woman of P.M.S'ing when she has a valid reason to be angry. Or worse yet, when my husband tells me I am irrational. Bastard.

Maybe I am just jealous and sad that my sis gets to have what I lost. And that this baby will never know their cousin the Shalebug. Will never appreciate what a person with a disability can bring to a family. This child will never have his or her life touched by my angel. And that just sucks.

Water Works!

2006-03-26T10:11:00.000-07:00

Excuse me, dear internet, for not posting more frequently. But I seem to have bitten off more than I can chew, inviting all the free world's children to stay in my home for the weekend. And bring your untrained puppies too! My coping method: Bury yourself in urine puddles. It makes the grief go away....

In an effort to rejoin the living and resume my place in the hearts of my nephews and niece as their favorite aunty, I am taking them to an indoor waterpark today. Because there is nothing better than trying to corral seven kids while running around with your pasty white, dimpled thighs showing, for all the world to see. Right???

The last time I was in a pool was the day Bug died. It was a fabulous day. In retrospect, I am so very thankful that I had such a wonderful last day with my Shalebug. The images and memories are blazed into my conscience until the day I die. The sky was absolutely pristine blue, not a cloud in sight. It was just warm enough with the sun beating down, that Shalebug and I didn't wear our fall jackets. I held his pudgy little hand into the building where we met his aide. He chewed on the front desk, because he would drool on anything, until I tugged at his arm and told him that was gross. I watched him toddle into the change room, where he had to stop and play with the open door. Once we were inside, there was a very large, very saggy, very naked older lady changing out of her suit. Ok, so I could lose that image, it was fairly traumatic. I made a joke with Bug's aide, and offered to help change him out of his clothes. My offer was declined, and I wanted to get the hell away from scary, jiggly, naked lady so I scampered off with my tail tucked between my legs. But not before Bug and I drooled our love over one another.

I took off shopping, I was buying a breast pump for my Nazi friend. (Don't worry, dear internet, she is not really a Nazi. She just likes to boss me around like one.) After my requisite stop at the local Timmy's, where I greeted my gang of aging farmers, I went to pick Shalebug up.

He was dressed, and playing in the sand box, waiting for me. His hair was wet and he had his shades on. He saw me and couldn't toddle over fast enough. We slimed each other, because that's what we do did. His aide told me he had a wonderful time in the pool, for the first time the water didn't freak him out. She said he giggled and splashed, and there were no tears. A real first for Bug, who had sensory issues. Water therapy seemed to be working! Yay!

Bug pressed the button for the door, and toddled off into the sunshine and out into the parking lot. I packed him into his car seat and waved good bye to his aide, after thanking her. Shalebug and I then proceeded on to my Nazi friend's house. We rocked out the whole way to Nickelback's new c.d.

It was a great day, and I am thankful for it. So today, as I desperately act like my neon white thighs are cool, I am going to remember that day and rejoice. And be thankful I don't look like the jiggly lady in the locker room.

Yet.

Bug's masterpieces

2006-03-24T22:13:00.000-07:00

When Fric and Frac came home from school yesterday, they brought with them another piece of the Shalebug. Apparently, Bug's teachers had cleaned out their desk and found some art work he did earlier in the year. It shook us up, having something touched by Shalebug, just two days before he died. Yet, it is another treasure I will hold on to until the Alzheimer's sets in. But looking at his scribbles brought back a flood of memories. I have been so blinded with sorrow, with misery, and sheer longing that I haven't been able to bring him back to my mind. It seems as though I keep remembering the same few memories, over and over again. But his Picasso-like scribbles triggered memories that have been dormant in my mind, memories that like a seed, just needed the right environment to flourish.

Bug was obsessive. And my shadow. So anything I did, he did a million times more. For his sister's birthday, I painted her bedroom. Lime green walls, with cherry red accents. (Trust me, it will get your blood pumping first thing in the morning.) Mommy was painting, which meant so was Bug. I gave him a dry paint brush, and off he went. Painting his imaginary masterpiece. After painting all Fric's trim brilliant red, I carefully wrapped the brush in plastic wrap (I might need it for touch ups after all) and I carelessly placed it on top of the can of red paint, with the lid placed on top, loosely.

Again, not winning any mother of the year awards, I neglected my Bug and proceeded to paint my daughter's room a nauseating lime color. Feeling quite proud of myself for being such a wonderful, thoughtful mother to my daughter, I never noticed when Shalebug wandered off and got really quiet.

Now any parent worth their salt knows a quiet child is a child creating mischief. I, however, was too preoccupied, rocking out with Louis Armstrong and splattering paint all over the place to notice anything out of place. It wasn't until my phone rang that I noticed Bug was A.W.O.L. Suddenly, I have a mental fart and realize the paint lid was not on.

Yes, dear internet, mommy-of-the-year struck again. Bug grabbed the paintbrush, wiggled it out of the plastic and knocked the paint lid off the can. He then proceeded to dip the brush into the paint (because he really was clever!) and began his not-so-imaginary masterpiece.

Picture a four year old, wall to wall brand new blue carpet and lots of red paint. Everywhere.

To my credit, I thought it was pretty funny. It looked like Bug had killed a platoon of paint cans. And my angel, was smart enough to paint only the rug, and not our brand new furniture.

My husband did not think it was so cute. But he always was a bit of a fuddy-duddy.

And the upside is, my brand new laminate flooring is much prettier than my blue and red carpet.

Understanding

2006-03-23T08:46:00.000-07:00

My mother believes I have to let my son go. She believes blogging about him is making the situation harder. She tells me not to be upset if other people don't ask about him anymore, or wonder how we as a family, are doing. She says the world still misses him, but they have chosen to move on, because they have to, because it is the only thing to do.

And I agree. And I thought I was moving on. I work everyday at a greenhouse while the kids are at school. I go out and visit. I shop. I laugh. I cry. I am working through my feelings, trying to separate the pain from the joy. But I am also working on doing the one thing that keeps me from sobbing so hard it stops me from breathing. I am trying to hang on to his memories. Because that is the only thing I have left, other than the stretch marks and bad back he gave me. Memories and love. Because in a blink of an eye, POOF! It was all gone. He was gone.

I know that many people don't understand my attachment to the little Bug. He didn't smile, he didn't joke, he didn't do a lot. But he loved, and he had value, whether he was born whole or not. He was the heart beat of this family, shaping all of us into better people than we were before his arrival. I know his existence made some uncomfortable and now, in his death, he managed to do it again. I understand this, even if I don't like it.

I also know the suddenness of his death is complicating things. He wasn't dying from a lingering disease. He had no terminal prognosis, no deathly diagnosis. His body just quit, and no one can explain why. And truthfully, that hurts. The pain I feel is different than a parent who had to watch their child slip away for weeks and months. That would be torture. Yet, in the end, both pains are equal, because the loss is equal. I understand this.

What I don't understand is why is it wrong to want to remember him, document him, so that when his now 8 and 9 year old siblings grow up, they will have actual memories to relive. Not fuzzy images warped over time.

My mom says people are saddened by how grief has affected me. So am I. But I can't change it, even though I would give my soul to have him back. I don't understand how I am supposed to let him go, stop thinking of him, stop remembering.

Like so many other things, I just don't understand.

Good Grief

2006-03-22T08:19:00.000-07:00

Grief. Such a funny word. I used to love the comic strip Peanuts. I used to pretend I was Lucy and I would drive my brother batty by chanting "Good grief, Charlie Brown!" over and over again. (Primarily to annoy him. He had a hair-trigger temper and could beat the snot out of me with just one hand, so any leverage I could find, I used.) But not once, with all that chanting, did I understand what the word grief meant.

As I grew older and learned how to use a dictionary, I learned the meaning of grief. I even experienced it for the first real time when I was eleven and my grade six teacher, Mrs. Banks, died from lung cancer. Over the years, I have had many more opportunities to discover the definition of grief. My favorite cat, an uncle, even a best friend all passed away. I even had the temerity to grieve over a lost boyfriend, dumped for a fatter, younger woman. Don't worry George, I'm over it.

But through all of this grief, I never really understood what it meant to really grieve. I had a small insight when my husband's dad passed away from a long battle with Multiple Sclerosis. I was saddened, heart broke really, to watch my husband struggle through that loss. And last April, when my wonderful gramma lost her battle with cancer, I thought I understood what it meant to grieve.

Alas, I now, finally, understand what it means to grieve. It is not something to take lightly. Not something you quickly move on from. It is real, and heavy, like a wet wool blanket tossed over your soul. My best friend asked me what it felt like, having to shoulder this burden, this loss. She was not being naive. She wanted to help, to understand. And the best way to describe this grief is to imagine you are alone in a dark room. In front of you is a candle. All you can see, all you can feel is the light from this candle. This is grief. For many days, weeks and months, all you can see is the light from this candle. Until one day, the candle is a little farther from your face. The light is not so bright. You can still see the candle, but you can also see other things in this room. The candle is always present. And on good days, the candle is an arms length away. But some mornings, some moments, the candle comes right up to your face, blinding you with it's light, leaving you unable to see or feel any other thing. Except the damn candle. That is grief. It is always here, always present. And on good days you can see around the grief, but you never know when the grief is gonna get you. But it always sneaks back in. And you can't blow out the candle. Ever.

Good grief, Charlie Brown.

Thank you...

2006-03-22T07:55:00.000-07:00

Thank you Se7en, you did it again. For any one interested in getting a new look for their blog and want a prince to work with, go see Blogs Gone Wild! I gave this man absolutely nothing to work with, again, and he pulled it out of the hat for me. Or as my sport nutty son would say, "Knocked it out of the ball park!"

For those of you who haven't seen his work at my other website, go see Redneck Mommy. Very cool, indeed.

Love Carved in Stone

2006-03-20T19:42:00.000-07:00

Since I did no bodily harm to anyone or to any ham, I woke up this morning feeling rather pleased with myself. It was time for a treat. I decided to make the trek out of the sticks and into the city. Where I promptly hit a Starbucks and toasted my Bug. Driving alone, in a car, for an hour is a distinctly different experience now. Where before, I would rock the music and watch the Shalebug rock out to the tunes, head bobbing, eyes rolling, drool a-dripping; now there is no one in the back seat. Just me. I can crank the volume and not feel guilty about condemning my child to a life of hearing aids amongst all his other disabilities. It is a tad lonely, but I am getting through it.

After finishing my errands, I came home. And ripped into the pack of pictures I had picked up earlier in the day. (Rather like opening a Christmas present, you never know what is inside the packing.) Out floated the typical blurry shots of Fric and Frac, my hubby, and of course, a variety of nieces and nephews. And then my heart bottomed out. No, there were no last, forgotten pics of the Bug. Instead, there was, in techni-color, his head stone. I had forgotten I had taken pictures of his grave marker. Which, of course brings back a flood of memories and all the pain that I try so valiantly; so desperately, to shove back into it's dark corner on a daily basis.

A person expects to pick a grave marker sometime in their life. An aunt, an uncle, perhaps a parent. But when I was pregnant with Bug, when I (finally) brought him home from the hospital and loved him all those years, not once did I expect to have to do such a repugnant chore. I brought him into this world, and I never thought I would see him out.

I spent years scribbling my words on what ever I could find. In school, on the job, at home. Jotting my thoughts and feelings are as second nature to me as breathing and combing my hair. (A girl does have her priorities.) But there are no words that can express a love so deeply felt as that felt for your child. Inscribing only his name wasn't enough. Yet a poem was too much. Here I thought paring his life into a five minute speech was hard. Try finding the right words for a two foot slab of granite.

In the end, it all boiled down to a mother's love. His name and dates are inscribed on the front, as well as the words said to him every night for four years, nine months and 17 days, before going to bed: God Speed Angel boy. And on the back, just from me, is inscribed : Mommy's Little Man. Because he was, and always will be.

Sweet dreams with a Chill pill

2006-03-19T09:56:00.000-07:00

I dreamt last night of my Shalebug. Blue eyes bright, the giggle I would sell my soul to hear again. He was wearing blue coveralls and he was annoyed by my constant need to smother him with kisses. Much like in real life. I hope he is happy and someone is taking good care of him. Because his mommy misses him so.

But today is another day, post-Bug. Today brings new struggles, new joys. I woke up to the sounds of Fric and Frac giggling like mad over (what else?) potty humor. Not the same as blue eyes at the edge of the bed, but not bad either. I am going to soldier on and face my family with grace, dignity and perhaps a touch of liquor in my coffee. My husband will hold my hand and dry my eyes. And I am going to take my best friend's advice before leaving, and take a chill-pill.

And if none of these things work, well, there is always the family ham.

Party Pooper

2006-03-18T11:13:00.000-07:00

Tomorrow is my grandfather's 80th birthday celebration. He is a spry, young rooster. If my honey and I are half as fit and active at his age, I will be very blessed indeed. We named the Shalebug after Grampa. After swearing not to name any of our kids after any relatives, on my third, I knew it had to be done. I wanted my grandparents to know how much they have meant to me, and will always mean to me. Boo agreed and we used his grandfather's name for Bug's middle name.

We weren't kind. We had the best of intentions. But two scandanavian names that no one could pronounce, led to years of frustration on many different fronts. But the names were given in love. Tomorrow, I am going to celebrate that love. But I am worried I will be the one in the corner, with silent tears streaming down my face, unable to think of anything but my lost child. Inevitably, there will be one person, maybe more, who don't understand. One person who will be annoyed by my sadness. My inability to stem the tide of grief, even for one day, one moment.

And I don't want to be the party pooper.

Losing my grip....

2006-03-17T07:55:00.000-07:00

I'm annoyed right now. However, that is not saying much. I annoy easily since October. So I blog here for an outlet. So I don't drive away my husband and send my children into dark corners, rocking back and forth in silence, scared for their lives. Blogging has helped me cope with some serious threats to my mental health. Blogging has helped me preserve my memories of my son, the Bug. But now, blogging has turned on me, and is driving me mad.

You see, I tried to post on my Redneckmommy blog, and I can't. Apparently, Blogger is picking on me and several hundred more like me. We have been forbidden access to our server because of an internal filing issue. Blogger says they are trying to correct it. They haven't yet. My blood pressure is rising.

It's the little things that seem insurmountable right now. As if everything in life is out of control. I recognize this and understand that I am having issues with coping. And don't worry dear internet, I am seeking help. (The real kind, not the blogging with a tequila in one hand kind.) On Monday, if I survive the madness of blogger booboos and a looming family get-together on Sunday.

Which, I suppose is the root of my anxiety, right now. I am nauseated by the thought of being surrounded by my whole family. Aunts, uncles, cousins. Hasn't happened since THE funeral. Several of them never met my son, were disgusted by the fact I "diluted" the gene pool. And yes, dear internet, they actually said this. Yet, when Shalebug passed away, they showed up in droves to support me.

Where were they when he was alive?

So you see, dear internet, trying times abound for me. And without my blogging fix, you just might read about the grieving mother who finally lost it and shoved the family ham up her uncle's arse...

Reinventing yourself.

2006-03-16T15:52:00.000-07:00

The most frustrating part of the experience of losing a child, is it changes who you are. Whether you needed changing or not. I liked me, I felt I was a complete person. I liked my children. And I loved who my honey grew into. The type of father he became. I genuinely felt blessed. I thanked God regularly. And I (privately of course) sneered down at other families who just didn't seem to get it.

And now, we have to start all over. Reidentify ourselves. Not just me, but Fric and Frac as well. They attend a very small school. Before they were known as the blond kids who played kick-ass soccer. The blonde kids who had a mom who always managed to spill her coffee, no matter what, no matter where. The blonde kids who had a handicapped brother. And now, they are the blonde kids whose brother died.

My hubs and I have been struggling to explain the randomness of life. The big mystery of it. But words can't take away their pain. Their confusion. They have been through so much, gave up so much already just to be siblings to such a special boy.

I see their frustration. I understand it. And my heart breaks for them.

Super Mommy Saves the Day

2006-03-14T07:52:00.000-07:00

I am an outdoorsy type of woman. So is the hubs. Consequently, so are my children. It didn't matter if you had tubes hanging out of you or not, whether you could walk or not, or even if you were having a bad day, if mommy is outside, so are you.

If I was mucking in the garden, the Bug was in a playpen. As he grew older, he graduated to the swingset. And eventually, I caged the poor little duffer inside our trampoline. Don't worry dear internet, I never bounced him too high. Shalebug loved being outside as much as I did and still do. So it was a great pleasure the day Grampa brought over one of those jogging strollers.

You see, dear internet, we live in the sticks. The sticks mean no pavement. No pavement means a lot of gravel. Wheelchairs and baby strollers don't work so well in freshly graded gravel. But a jogging stroller cuts through the grit like a hot knife through warm butter. So the Bug spent hours in his new jogger. It opened up a whole new world for the two of us. It meant that I no longer had to bust my ass packing his wiggly-yet-strong little body up and down our very hilly yard. Yea for me!

So one fine, sunny afternoon, I put the Bug in the jogger and told Fric and Frac to watch him. (That's mommy speak for "If you hurt him, I will punish you until you beg for mercy.") Do you see where I'm going with this, dear internet? Being the wonderful, cautious, safety-oriented mother that I am, I proceeded to leave the Bug in the ~~mercy~~ care of his four and five year old siblings, while I marched on down to the garden.

Now our garden is about 200 meters away from the top of the steep hill which I left my disabled child perched upon. While strapped in a baby jogger with three large wheels. While under the supervision of two preschoolers. Who were told not to touch. (Telling kids not to touch is like bait to fish, they have to try to take the bite.) At the bottom of this hill is the garden, me and a very large Spruce tree.

So there I am, Ms. Safety-first momma, pulling weeds from the overgrown jungle I like to refer to as my garden. When all of the sudden a quick motion from the corner of my eye catches my attention.

That's right, dear internet, Fric and Frac struck again. They decided it would be fun to push the Shalebug down the hill to see how fast he could go. (In their defense, they tried to run along side him, but were foiled by untied shoelaces.)

I looked up and darn near had a heart attack. There is my child, who can't even sit by himself yet, barreling down the hill at 60 mph, heading straight for the damn Spruce tree.

After some quick math, and even quicker thinking, I realized there is no way I can stop this tragedy from unfolding. So I did what any good momma would do. I placed myself into the path of oncoming traffic. I put myself in between certain carnage and my child. I took one for the team. I raced to the tree and instead of the Bug crashing into the needles and being scratched to death, he crashed into me. I am infinitely softer.

Crisis averted. No harm, no foul.

At least that is what I told myself as I was picking Spruce needles out of my ass for the next day.

*Fric and Frac claim to this day that neither of them touched the damn jogger. However, I am no fool. I see the evil gleam in their eyes.

Living with Sunday morning Blues

2006-03-13T09:08:00.000-07:00

I didn't post yesterday. I needed time for Fric and Frac. Time to be happy again. And some space from my pain.

Sundays tend to be hard for my hubby and me. Sundays were, and still are, the guaranteed day of the week our whole family will be together. We made a point of this. No work, unless it was done as a family unit.

Now our Sundays seem hollow. We still haven't adjusted completely to our new family unit. Sundays with the Shalebug meant waking up and rolling over to face the edge of the bed and opening your eyes to find two little blue ones staring back at you. It was a wonderful way to wake up.

I'd lift him onto the bed, where I would slobber all over him. He would be right between Boo and me. He always turned to touch Daddy's hair. There must have been something magical to Shalebug about Dad's hair. Because whenever Boo was around, the Bug went out of his way to feel his father's hair.

After cuddling and hair touching, if he had a bad night, he would fall asleep on my pillow. If the night was kind to him, he would giggle and laugh, especially if Fric and Frac joined us in the bed. We would all tussle about, having wrestling wars, until my coffee demon came calling.

Sundays are still good. But mornings are hard. No one touches daddy's hair, and there are no blue eyes level with bed.

Blessing

2006-03-11T11:00:00.000-07:00

Writing Shalebug's eulogy was a testament to powering through writer's block. I had the devil of a time trying to edit my precious child's life into a five minute testimonial. But I managed. And I am better for it. I have thought about it and decided to share it with you, dear internet. Why? Because I want the world to know the boy who was known as the Bug.

It went something like this:
Some of you may wonder why I'’m doing his tribute. Why we never passed this task on to one of Shalebug's many friends or relatives. But those of you who know me know that for so long I was Shalebug's face, his shadow, his words and interpreter; it just seems fitting to continue for one final journey.

Bug was born on Jan 04, 2001. He was diagnosed with agenesis of the corpus callosum, Moebius Syndrome, bilateral club feet, etc... I could go on and on because the little guy had a lot of fancy letters and labels after his name. Those labels meant he couldn'’t smile or frown or blink. He didn'’t eat, but he loved to taste. He couldn'’t talk, but he never was quiet. He fought to breathe, to sit, to walk. It was almost a year before we recognised the sound he was making was a giggle.

But these labels did not define who he was. Instead, they were the chains that tried to hold him back. It took Bruce and I both some time before we realised that Shalebug would not be bound by the limits others had placed upon him, and to understand he would reach his milestones in his own time.

Like everyone else, Shalebug was the sum of his whole, not just his struggles. Bug endured a lot of pain and heartache just to simply be. He was in the hospital for three long months at the beginning of his life and we made many more visits through out the years. He had countless operations and procedures. He was poked, prodded and examined more than a body should ever have to be. He developed an instant distrust of any one who came to sit in front of him in a small room. Shalebug's paediatrician, once told me Bug would eventually outgrow the crying he did whenever the big guy would walk in the room. But our Shalebug was stubborn. For as much as I loved seeing the big guy, Bug just never did.

Boo and I want you all to know the boy who never smiled. We understand how hard it was for people to know him when it seemed Shalebug was not interested or far away. Many tears I have shed because he never talked, never said "“I love you Mommy."

So I stand before you to tell you about the boy we knew. The boy who loved his bubbles. Who loved to watch his sister and brother rough house and then giggle with delight when they would drag him around with them. The same boy who would open and shut doors and cupboards until I thought I would lose my mind. In his last year he started music lessons at school. One of my favorite memories will always be him pounding on the piano like a little Liberace.

Our son was stubborn yet gentle. He loved to give everyone kisses but you had better be prepared to be slimed by him. He finally learned to hug about a month ago, and he just figured out how to wave bye-bye on command. He would hi-five any one who asked. He took his first steps at the end of May and since then we couldn'’t slow him down. On his last day he was being particularly stubborn in the Camrose Superstore. The little Bug wouldn'’t move, so busy was he examining the raisin bags in the aisle. To get him motivated (and to speed the boy up) we raced to "“On your mark, get set, GO!!" And off he went.

Shalebug was my hero and his father'’s hero. His spirit was strong and kind and gentle. We used to joke around that he was our easiest child yet. You didn'’t have to worry about him talking back and you could just plug him in when he needed to be fed. But he wasn'’t our easiest child. He was the one who brought me to my knees before God and made me see the light. He strengthened our family with the bonds of his love. He brought Boo and me closer and formed his siblings into better people. He blessed the lives of everyone who had the opportunity to know and love him.

We learned from his struggles what it meant to appreciate our health and our bodies. Everything we take for granted: speech, breathing, eating, walking, even bowel movements. For him it was always a struggle.

Shalebug taught us patience and understanding. He showed me how to see everyone, even the invisible. He has taught me there is always a reason and I can learn from anything even the tragedies of life.

So your brother and sister, father and I would like to thank you, my little moonbeam, our Bug, for being here and enriching our lives so very much. As we watch Fric and Frac grow into the people they are meant to be, we will know they are who they are because of you. And we will always remember your love.

So the next time you are drinking a Starbucks, I ask that you stop and think about my coffee-loving little boy. Remember, he was never our burden, but only ever our blessing.

Angelbrother

2006-03-10T19:57:00.000-07:00

I find it hard to miss my son. It feels like I am dishonoring him by being sad. I want to yell from the rooftops how much I loved him. How proud I am of him. How much I am blessed by having him as part of our family.

Fric and Frac miss him so. But I believe I was wrong in thinking they would forget him. Or that he would become less important to them as time goes on.

Just yesterday Frac had a show and share in his class. The teacher asked him to tell the class about his family and his life. They are doing this because they recently had four new students join them.

Frac told them he had a cat named Fanny. A tractor named Lucy. A sister named Fric. And an angel brother named Shalebug.

Life is good.

Quote of the Day

2006-03-09T12:10:00.000-07:00

Blame someone else and get on with your life.
-Alan Woods

How I wish I had someone else to shift the blame on to. Maybe there is no blame.

Which sucks when I am raging with anger right about now...

Cause of Death

2006-03-09T08:03:00.000-07:00

The Shalebug's autopsy report finally arrived. I knew it was coming. The medical examiner phoned on Thursday to say he closed the case. His findings: cause of death due to hypocalcemia of undetermined etiology.

Great, right? Mystery resolved. It was nothing my husband or I did. We put him to bed at 8:29 pm on Thursday night, where I had spent the last half an hour holding and kissing him. The two of us were watching E.R. I was being lazy and didn't want to get up, so my honey took the Bug and put him to bed. And the Bug was fine. All was well.

When I went in at 11 to give him my nightly kiss,(just another reason for me to slobber on him), the proverbial shit hit the fan. His bowels were extremely distended and he was moaning. We thought he had a bowel obstruction. We tried to clear it for him and by 1 am everything seemed better. We all went to bed. Mommy's intuition kicked in though, and I checked on him an hour later.

And my world ended. He was sick and pale. I thought, hell I don't know what I thought, I just KNEW. I picked him up and drove him to the hospital. It took me 23 minutes. It normally takes 55. He died in my car.

So for almost five months my husband and I have been dealing with the guilt of not having saved him.

The report said he would have died regardless.

So why does this hurt so much still?

Up syndrome

2006-03-08T10:02:00.000-07:00

Fric and Frac were three and two when the Shalebug was born. With all the madness surrounding his birth, we sent them to a friends farm for the first two weeks, until we knew what was going to happen. When it became apparent the Bug would not be leaving the hospital at any time, we brought them home. I was torn between two worlds. I had a sick infant in one place and two sad and confused toddlers in another.

My hubs and I did everything we could to include them in the hospital experience. They visited often and because I spent my days away from them, at night we spoiled them rotten. We wanted them to know we loved them too, but their baby brother needed us badly. And we did all right. By the grace of God. They never resented the Shalebug and they just accepted his disabilities without any problems.

In fact, they were proud of their little bug. My hubs and I did our best to explain to them what was the matter with him. Honesty no matter what. We told them he couldn't smile or blink. He couldn't eat. Or talk. He wouldn't walk (at least until his feet were straightened.) We told them he would learn differently because his brain was made different. And they sucked all of this in. So much so, that where ever we were, for years to follow, they would tell everyone, Shalebug's business.

"This is my brother. He can't talk or eat or walk. He has meebus synrome and he is missing the bridge in his brain."

But the best time of all was when, after the birth of their cousin who has Down syndrome, they announced to the world "This is my brother. He can't talk, or blink or eat. He's missing the bridge in his brain. He has Up syndrome. My cousin has Down syndrome."

They might not have completely understood what was wrong with him, but they understood their brother.

Medical Mystery

2006-03-07T12:09:00.000-07:00

My honey believes I am going through a crisis. Very profound. To him I just want to say "Duh!" But he believes I am struggling because I have based so much of my identity these last five years on being the parent to a handicapped kiddy. I don't necessarily disagree. But it begs the question, if the same thing happened to one of my healthy children, would I be this devastated? I sincerely, and devoutly pray I never find out.

As I started a few posts back, the Shalebug was born handicapped. After they transferred him to the Stollery they ran an unending barrage of tests on the poor little bug. When I arrived six hours later, I was shocked by how he looked. He was hooked up to a ventilator, his feet, well they horrified me, and he was HUGE! 9lbs, 1oz. And by far the biggest baby on the block!

Entering the N.I.C.U was terrifying. Row after row of sick infants. Frightened parents. Machines that alternated between a soft hum and a shrill beep, screaming out emergencies. I was scared, and devastated and grieving all at once. And all I wanted was to be able to locate my child in that sea of sick and dying babies.

Well, that night was the start of our all too brief journey together.

It took eight days, 12 specialists, a million procedures and examinations, hours of me listening to the doctors arguing about what the heck was wrong with my baby and it all boiled down to a resident sticking a kleenex in my child's eye before they handed me a diagnosis:

MOEBIUS SYNDROME PLUS. Moebius is a rare disorder characterized by lifetime facial paralysis. You see, I commented to a neurological resident that the Bug never seemed to blink or close his eyes. He got all excited, grabbed a tissue, spit on it, made it into a point and then jabbed it into Shalebug's eye. He just about peed with excitement. He then raced off, grabbed his primary and came back with about a dozen people in tow. When I asked what was Moebius, they only told me that the Bug would never smile or frown. I later found out Shalebug was also unable to blink or move his eyes from side to side. Or swallow. It was after this diagnosis the pieces of his puzzle fell into place.

The next day he was diagnosed with Pierre Robin Sequence. PRS is characterized by a combination of three features, possibly due to the underdevelopment of the lower jaw. The lower jaw is abnormally small, the tongue is displaced downwards, and there is a cleft palate. Shalebug's tongue had a tendency to ball up in the back of his mouth, causing his airway to block.

Then his M.R.I. came back, reporting the complete absence of his Corpus Callosum. The tiny bundle of nerve fibres that connects the left and right hemispheres of the brain. The same part they snip if you have severe epilepsy. Apparently, you can be normal if you only have some of the Corpus Callosum but you are pretty much screwed if you have none. Lucky us. The M.R.I. also reported brain abnormalities that would more than likely lead to severe developmental delays.

And of course, there were his feet. His beautiful toes. I'll admit at first they freaked me out. But I quicky got used to them and they became a great source of amusement to both of us when I nibbled on them!

So after four months, a g-tube insertion, a fundoplication, bilateral tenotomies, casting correction (all unsuccessful), and a tongue-lip adhesion; they let us go home and start our lives. As long as he was hooked up to an oxygen sat moniter, an apneic moniter, a suction machine, and of course, his feeding tube. Life was scary as hell at first, but it got better fast.

I learned through all of this to relax. And fight for the little man who was invisible to everyone. He couldn't speak, he didn't have common body language and he was really easy to ignore. He hardly could move at for the first two years.

I hope this explains why I submersed myself in the Shalebug. My children, my husband and I are better for it. I believe our extended family is as well.

Which is why I am currently suffering from an identity crisis. No longer the mother to the invisible boy. No longer the mother to my baby. I have all these skills and nothing, no one, to apply them to.

For a little man who never said a word, not once, he spoke volumes to me. We had whole conversations, the two of us. And that is what I miss the most. My bug.

Second thoughts

2006-03-06T13:22:00.000-07:00

I am having second thoughts about this blogging thing.

I just read my previous entry and had to debate deleting it. Not because I feel I shared too much info, but because I don't want people (especially family and friends) to think I have lost my mind. Or that I hate them. Or that I wish it were their child and not mine.

But I have, I do and I would trade any one else's child for my own. Sad.

I love my family. I love the Hub's family. And I love my nieces and nephews. I am truly blessed to have such wonderful people in my life. But I am hurting. Still. And struggling to cope with an imperfect situation.

So I am leaving these uncomfortable blogs up, just in the name of "keeping it real." But please know, that I am doing well. I really am. And so is the Hub, as well as Fric and Frac.

And perhaps that is a small part of why I am mad. Because I am moving on. Without him.

Because I don't want to.

My tale of woe

2006-03-06T10:10:00.000-07:00

I survived. My husband survived. And Fric and Frac, well I believe they just got started!

The sledding/birthday party was a success. And by success, I mean there was no carpet of red on my pretty white hill, no broken bones, and only the smallest amounts of arguing over who got to use the inner tube next.

So, a success.

There were dark spots to the day though. As I was huffing my way up the hill, hauling yet another toddler back up, I was struck by how this should have been Shalebug in my arms. Then there was the moment inside, with the cake and icecream, and the chorus of "Happy Birthdays!" and all I could think was there are no more wax candles for my kiddy.

But the hardest part of the day was realizing no matter how hard my Hubs and I tried, we failed. Shalebug died. And the sobering realization that some parents just don't try as hard as we did, do, and they will never face what we faced. And life is just a pile of sucky-it's-not-fair-shit.

You see, Shalebug was different. Right from pregnancy. And while my doctor kept insisting that I was having a normal pregnancy, my husband and I knew differently. How we prayed we were wrong. But the moment he was born the room went still. The doctor and nurses clammed up and wouldn't say a thing. And my husband leaked tears while giving me anxious looks.

The Bug was purple. His feet twisted backwards and darned near touched his butt. And he was quiet. They worked on him to clear his airway from mucous, to help him breathe, but that beautiful baby cry was not heard until months and months later.

After allowing me only to kiss the top of his head, they whisked him away. I asked my Hubs if he did indeed, have clubbed feet. Hubs said yes and then chased after the baby, because I needed to know what the heck was going on. It was in that moment that I knew my life had forever altered. No matter what happened, I knew I was never going to be the same. Yet stupid me, I felt the worse thing in the world was to have a child with club feet. I even joked, "at least he doesn't have a cleft palate!" I was so ignorant.

Two hours later, my Hubs and the docs came down to talk with me. Shalebug had bilateral clubfeet, facial abnormalities indicative of a palsy or somesort of syndrome, an instable airway, a bad ultrasound of his heart, and oh yeah, a cleft palate. They were transferring him by air ambulance to the best neonatal hospital in western Canada, the Stollery Children's hospital.

I was devastated. I sent my mother and my hubs to be with the baby so I was left alone to be devastated. But I couldn't handle the thought of my baby being away from me. All alone. (See a pattern here?) Hours later, from the Stollery, my husband phoned to report good news. His heart is fine. However, there seems to be a problem with his brain.

And so the saga began. I discharged myself against sound medical advice, and joined the Bug in his new home. Where we stayed for the next four months. And visited weekly for the next year. And then monthly until the date of his death. The hospital where they diagnosed him with multiple syndromes*. The place where he had countless operations, and procedures through the years. The place where I made friends for life and learned a whole new attitude. The place where I introduced myself to God. And the very place where I brought him in one final time. Seemed fitting in a weird way. I entered the Stollery the first time without him, and I left the last time the way I came in - without him.

But getting back to my sledding story, through all of this, my Hubs and I faced challenges that no other member of our family ever (and I hope Never) had to. And I fought like a damned wildcat to get both my family and his family to accept our little Bug. I never, not once, never not included him because of his differences. I pushed (and fought) to make sure every family activity would be inclusive to Shalebug. And my hubs and I fought to give him the best damn life he could have.

Which is why it fu^*ing sucks that he is gone. Because there are parents out there who don't try half as hard as we did with their healthy kids. And nothing bad ever seems to happen to them. I am still angry. I thought I wasn't. But I just want to scream at anyone who will listen "Why does it seem like God is picking on us?"

*Medical mystery will soon be revealed. Just drying my eyes. Don't want to short out the keyboard.

Carnival ride

2006-03-04T17:35:00.000-07:00

I have never been a carnival lover. I can count on one hand how many ferris wheel rides and merry-go-rounds I have been on. And I avoid the vomit machines like the plague. And yet, here I am stuck on this rollercoaster of pain. It doesn't take much to make me sick. Or hurt. A song on the radio. A picture. An odor. Today it was the laundry. As I was folding it, I was struck by the fact that I now have three less loads a week. No slimy, crusty shirts; no pants with dirty knees from crawling.

So I sat there, on the floor of my laundry room and wept. Perhaps the stress of tomorrow is getting to me. Maybe I am losing my mind. I just hurt so much I can't breathe. I would sell my soul to have one more moment with him. And yes, I am a Christian. And I find some comfort in knowing I will see him again. But he was four. And he was my little man. And now, we are both alone, in brand new worlds.

It is really hard knowing there is no more "Sweet dreams, little man." No more kisses. And it is worse knowing that I loved him so much that even he couldn't question my devotion. I am angry that my honey's family all have their kids, and their lives have gone on. Their kids won't even remember him in ten years. Some will never even have met him. He will be a face in a frame, with no feelings attached.

I hate rollercoasters.

It's a slippery slope

2006-03-04T11:26:00.000-07:00

My children are blessed. They were born into a family with a ton of cousins. All born roughly at the same time. It seems in my Hubs family, if someone gets knocked up, well there is a rush to follow suit. Hence, many, many nieces and nephews to enjoy at family gatherings. And it is great. Loud, but great.

The Shalebug's birthday is was in January. He also has two cousins who have Jan. birthdays. (See what I mean?) So when it was time for the parties, we adults just lumped them together. Noisy fun. And lots of cake. Well, in the Shalebug's case, whipped cream and icing. I digress. Because my Hubs and I live on an acreage we have a lot of room for the tribe to roam. And we have a mighty fine tobaggon run. So, in January we generally throw the birthday party at our place. The kids hurtle themselves down the hill at breathtaking speed, and we adults pull them back up the hill. (It is how we mothers stay thin.) The dads join in the fun, and play with fire. After everyone is exhausted and numb, the party is taken inside, to our very small home. Where the noise increases and bounces off the walls. And a great time is had by all. (Except for me, where I am uptight and need a drink to relax. That's me, the family lush. Kidding, dear internet.)

This January, well, we were grieving. And we had no snow. So my wonderful sister-in-law hosted the party at her house. Where we sang for the two kids whose birthday still mattered and we did a balloon release for the Bug up above. His siblings, Fric and Frac, really needed the gesture. As did I.

But tomorrow, the sledding-birthday party will once again be resurrected at our place, for the kids who have March b-days. I am nervous hosting the family for the first time since the DAY. But as I hurl myself down the hill on a flimsy piece of plastic, I will smile and know that live goes on, and so must I.

Haunted by What if's

2006-03-03T18:54:00.000-07:00

I mentioned earlier my son, the Shalebug passed away suddenly. When a child dies it shatters you. When a child dies suddenly and with no warning it destroys you. We were bombarded by grief, guilt and disbelief in one blink of an eye. And as we learned to deal with our new reality, we had to struggle with the burden of guilt, and battle the "What if's."

You know the "What if's." What if we took him to the hospital earlier. What if we drove faster. What if we did something, anything different. What if I prayed harder, more sincerely, etc... The What if's are what haunts you.

I haven't gone in to what happened that night. It is still too scary for me. Too painful. He died a natural, sudden death. The coroner just yesterday closed the case finally, and apologized for not being able to figure out why he died. One day, soon I hope, I will tell you, dear internet, all about that fateful night.

I was inspired to blog because of this site.

His pain haunts me, reminds me of my own. I grieve for that family's loss, as well as my own.

I blog here because I need to heal. And maybe through my story, my words, I will help my family and me heal. As well as anyone who wants to come along for the ride.

Shocking - on so many levels

2006-03-02T10:11:00.000-07:00

Funny how the little things trigger such sweet memories. Shopping with Fric and Frac recently reminded me of the times spent with the Shalebug in Superstore. He would be imprisoned in the cart and I would lean in to give him kisses. And promptly get shocked. I would think “Well, that hurt, but it’s over now, so let’s get more kisses” and then lean in to kiss him again and BAM! Shocked again! By this time, Shalebug would be pissed and start to fuss or if I really got him good he would try and hit me when I went in for a kiss.

Then there were the times when there was no static and I could kiss him all I wanted. I couldn’t seem to go more than two or three feet without going in for the ~~kill~~kiss. We would laugh and giggle and I honestly thought I had the world by the tail, if only for a moment. I would push him away from me and let the buggy go down the aisle and then chase after him and he always thought that was hilarious. Or pretend to be a crazy driver weaving and bobbing through the lanes. He loved it. Sometimes when he would get tired he would lay his head down and go to sleep in the cart. I always felt guilty - what kind of mom doesn’t take her kid home to have a nap when he’s tired?

And then there were the looks of abject horror we would get when we’d kiss and the slime would stretch between us like a taffy pull. Or when his eyes would roll behind and all you would see were the whites (particularly effective if he was so slimy he foamed at the mouth.) He got a lot of comments on the days when the sun was so blinding it hurt and he would cover his eyes with his fore arm. Inevitably, some one would comment on his shades: “Cool dude,” “Aaww, isn’t that cute,” etc... Sometimes I would explain the glasses were a necessity, sometimes I would just smile and nod my head. I always wondered what Shalebug thought when people made those comments.

Shalebug was like bait for the elderly. There he’d be, in his cart, wearing his shades, and it was inevitable that some grey haired stranger would approach him, looking for a little comic relief in their daily routine. (Kids say the darndest things, right? ) I never knew what to do in this situation, so I tried to take it one day at a time. If I was having a good day (meaning I wasn t particularly bitchy, hungry or tired) I would gently explain that the Shalebug did not talk, or smile as he had handicaps. However, there was always a little devil on my shoulder and sometimes his voice was too loud to ignore. When that happened, (usually when my defences were down - re: bitchy, hungry or tired) I tended not to deal with the situation with a lot of grace. Imagine, said grey haired elderly person of non descript gender approaching small child in grocery cart, like a missile on a mission.
Said elderly person: “Aww, aren’t you adorable. What's your name little boy?”
Shalebug: Drool.
Said elderly person at this time confused, wondering whether little boy heard him and is ignoring him because he has a bad mother or if the kid was “different" in which case they realize they may have made a horrible mistake in approaching the cute kid.
I, however, at this time, am having a ball. I know I have a choice: I can let the geriatric person off easy and compassionately or I can let them have it with both barrels. I am sad to say it was always an easy choice.
Me: “Oh, don’t mind the little one. He’s not ignoring you. He can’t see or hear you. He’s deaf, and blind.”(He wasn't, I'm just evil.)
Said elderly person: “I’m sorry, I didn’t realize. How horrible,” they say as they are hastily backing away from us while trying not to trip.

Yes, I know. Inappropriate on so many levels, but soooo fun. And I like to believe that the Shalebug got a giggle out of it as well!

Snowing in heaven

2006-03-01T15:02:00.000-07:00

It snowed here last night. I mean, really snowed. Fric and Frac are ecstatic and can't wait to hop on their sleds and go for a ride. I sit here, looking out my window and everything outside is so serene. The tree limbs are drooping, so heavy the snow weighs on them. The white of the snow is so pristine and there are no tracks to mar the pretty white carpet - yet. And all I can think about was Shalebug didn't get to walk in the snow. Or squint at the brightness. He just started walking this May. He hadn't quite mastered it by the time he passed, but it was coming. I can imagine bringing him outside this morning and watching him try to walk. He would protect his eyes with his forearm, so bright the gleam from the snow. And then he would take one crooked step and ... fall. His hand would reach out to steady himself and when the snow hit his hands, wrapped around his fingers he would lift his hand quickly, as if he was burned. He wouldn't make a sound, and I would laugh and scoop him up and then lick the snow from his fingers. And off we would go.
I wonder if it snowed last night in heaven?

Learning how to live (again!)

2006-02-28T13:24:00.000-07:00

Since the Shalebug passed on I have had to find a variety of new ways to occupy my time. During the Shalebug era, there never seemed to be enough time. There were doctors appointments, therapy appointments, early educational appointments, swimming, library and of course, trips to the pharmacy. All of this (and more) while trying to mother the healthy, if somewhat rambunctious, Fric and Frac. And of course, fulfill my wifely duties. (Snicker.) Since then, however, life has come to a standstill. Which is good. I mean, really, how much can one get done while wiping their eyes and blowing their nose? While I may not have had any emotional or physical energy to do anything but grieve, I always noticed the stillness.
Now, however, I feel like the proverbial groundhog. I have poked my head through the hole of grief and found that the sun still shines. Sometimes. Now the stillness, the absence of the Shalebug, ROARS. So in order not to loose my mind, and not focus on my loss, I putter. I am the queen of puttering. I make jam, I make homemade salsa. (Certain friends tend to appreciate this type of puttering.) I crochet baby blankets for the ever-expanding, almost due, pregnant sister. I read, I blog. I even go for the occasional walk.
What I don't do is focus on the searing pain that threatens to throw me to the ground and stomp me into pieces of dust. I don't go out in public if I know I am going to be the topic of entertainment for the local busybodies. (Yes, I am that self-absorbed that I think people have nothing better to do than discuss my state of dishevelment and my family tragedy.) I don't think about how four long months have passed and I still cannot grasp the reality of my son dying. It seems like yesterday that I walked out of the hospital empty-handed. I don't think about what I could have done any differently, because the WHAT IF's can literally kill your spirit. And I certainly don't think about all the people who have moved on with their lives, friends and family alike, and have forgotten my husband's, my children's, and my own pain.
What I am going to try to do is this: I am going to try to process my pain. I am going to try to find a new direction for my life. I am going to try to clean my house on a much more regular, and frequent, basis. I am going to try to be the best mommy to Fric and Frac, because they are the best kids in the world. Even if they refuse to pick up their laundry and make their beds. And I am going to try to fulfill my wifely duties. (Snicker.)
I am going to try to live. I have kind of forgotten how to do that.

My reason to blog

2006-02-27T21:21:00.000-07:00

Four months ago I buried my best friend. He was four years, nine months, and 17 days old. Needless to say, I was, am and most likely always will be, devastated. At first I was in shock, really, how can such a tragedy occur to me? (Sayeth one who has the arrogance of living a fairly unblemished life.) I didn't know how to cope, or how to respond. I felt lost and alone. I wanted to reach out and touch someone, anyone, but there was no one to touch. My husband and I were catapulted into the realm of lepers. Friends felt sorry for us, but were secretly relieved it wasn't their child who died. Family was of no help, they too, were in a state of shock and grief. And casual acquaintances found our pain too hard to bear. My honey and I found when we went out in public we would get one of two reactions: the curious stare, or the "I'm going to pretend I am blind and don't see you."
To be honest, I don't know which is worse. I suppose it all depends on which way my mood is swinging that particular day. So support has been hard to come by. Don't get me wrong, there are a few who have been wonderful, and can take full credit for my honey and I not jumping off the nearest cliff. But, living rural, and having dedicated the last five years of my life to child-rearing has effectively killed my networking abilities. So, I turned to none other, than you, dearest internet. And now, I feel strong enough, and anonymous enough to talk about life, love and parenting in rural redneck Alberta.
So here is to another mother clogging up the land of Blogdom. I am taking my leap, won't you fall with me?