Wednesday, January 17, 2007

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.

Friday, January 05, 2007

Happy Birthday Bug

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.