Make A Wish....

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.

Ghostly Encounter

Ever since my darling baby Bug kicked it I mean passed away, I have suffered from sleep disturbances. It seems as though I am unable to find my zzzz's, and when I do manage to slip into slumber, I am awakened by dreams. Dreams of different varieties. My favorites are when the little dude comes to see me in my dream wearing his denim overalls and we pick up where we left off: with him in my arms, drooling all over me. These dreams are so real I can smell his scent, feel the soft prickle of his freshly buzzed head, feel the heat from his body. Inevitably I wake up and spend the rest of the damn day moping. But I wouldn't trade these dreams for anything, because they are a tangible reminder of who he is, a type of reminder I am unable to summon up during my waking hours.

The other variety tend to be the scarier type. No matter what, I can't save him; I have to relive the shame of telling my mother my boy died. In these dreams, my brain isn't content to relive the reality of his passing. Oh no, my darling imagination has to kick into over drive. My most favorite (said with just an ounce of sarcasm) is when I go to my deep freezer to pull out a roast and instead find my lovely son floating face up with his eyes wide open.

Between that dream and the Monday Morning Massacre, I have begun giving that freezer a wide berth. Now when ever I need something, I just send in one of the troops. Gotta love having kids.

This past week has been of the hellish variety. Besides all the bendy sex the hubs and I enjoyed (and let's all thank my Yoga instructor for my ability to get OUT of some of those positions), my subconscious has decided to kick my ass. Not so subliminally. I have been waking up in a cold sweat, or panic, yelling out Bug's name or attacking my husband in the wee hours of the morn.

Normally he wouldn't mind being attacked in bed by a woman, but this type of attack has left him spooked.

We started talking about heaven, and angels and ghosts. I am a Christian, so I like to believe my boy flew heaven-bound and sits around all day eating bonbons while watching Oprah and laughing at me and his siblings. My husband's version of heaven is slightly different (read:boring). He believes our Bug is up there and that is enough for him. He doesn't have time to imagine the goings on of Heaven. He has to work for a living. To support me.

(Note the slightly passive aggressive way in which he delivers said line. Generally accompanied with a loud and long sigh.)

Still, as a mother who has a type A personality and control issues, it is hard to just leave things be and to trust he is where he is supposed to be. After all, he wasn't a typical almost five year old. The boy had no speech, could barely toddle about and was developmentally delayed. He may have looked five, but he was really only about 18 months old. What if he didn't go towards the light? What if he was directionally challenged and didn't know his ups from his downs?

What if, what if, what if? It's those damn what if's that will get a grieving mother every time. What if he's lost and scared? What if he's floating about with unfinished business and refusing to go to the other side? I'd like to thank CBS and the writers of Ghost Whisperer for fueling my obsession. I'll just forward my therapy bills to your accounting department.

Then there are the mediums and the psychics who claim to be able to talk with the dead. They appear on national television programs, reaching out and contacting lost love ones. I wonder if they are frauds or if they are the real deal. Could they find my Bug? Could they just put my mind at ease and let me know he's not banished to the pits of hell because he was a little confused when it came time for the big crossover?

I can just see Bug rolling his eyes (and not in a seizure-induced manner) and telling John Edwards that I hounded him in life with all my demands for kisses, now he can't escape me in death either...

Perhaps I should just go downtown and trust my fortune and my money to one of the ladies with a cardboard sign in the window advertising fortunes read for $5.00. I can just imaging walking into the back of a dark shop, shouldering myself past the beaded curtain and sitting at a table, anxious and hopeful that my boy will appear and not some other lost soul looking for a mommy figure in his death like he was in his life.

But lately, with my inescapable dreams and Nixon, the World's Greatest Dog, Ever. barking and growling into the calm air of the night, I have to wonder, is my boy lurking when he should be upstairs with the heavenly? Why else would my dog's ears stand on end and he suddenly go alert and beserk for no reason? Don't animals and small children see what we adults overlook?

Last night was one of those nights. The dreams haunted me and Nixon took to his growling out in the wee hours of the morn. The house was still and I was tired of being held hostage by these what if's. So I did what any brave and independent woman would do. I turned on a lamp and tip toed out into the darkness.

I was going to tell my darling little angel boy to get his ass back to heaven and leave me the hell alone. I'm tired of these bags under my eyes. Nixon kept growling and snorting, but he followed behind me, visibly upset.

I looked about and saw nothing. Felt nothing but the cool breeze of the ceiling fan against my skin. I took a deep breath and told my son I loved him but to quit haunting my dog and I. And then I waited for a response.

Nothing. So I flicked on the kitchen light, half relieved, half disappointed.

And saw a fucking mouse run between my feet and into the laundry room.

Unless my son has been reincarnated as a rodent, I do believe my ghost mystery has been solved.

After Nixon and I got down from the kitchen table (cause there is a mouse in my house!!!) I sighed with relief.

It looks as though I won't have to call for an exorcism. Just a damn exterminator.

Invisible Man

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.