Dead Kids Don't Count

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!

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

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

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

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...

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

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

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

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....

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 killkiss. 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

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?