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Wednesday
Jan172007

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.
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Reader Comments (24)

i just said this to you privately, but it's worth saying here, and everywhere - your words are beautiful, inspiring, HUMBLING.

Bug's soul shines so brightly from his eyes. Such a gift to those who let themselves SEE.

January 17, 2007 | Unregistered CommenterHer Bad Mother

Envious of anybody else's writing?
For shame girl.
You frequently move me to tears.
Honestly.
And here and there, you make me a better person. This was beautiful.

January 17, 2007 | Unregistered CommenterJ.

Beautiful, beautiful post, T. Beautiful, beautiful boy, as well.
I have a post up (about third from the top) that is about reponding to people's questions about my KayTar...if you have any insight? I'd love to hear it.

January 17, 2007 | Unregistered CommenterKyla

I don't think you will ever cease to amaze me. HBM had it right in her comment, your words are humbling. And beautiful and all the rest. Just like your Bug. I can't imagine what you've had to endure, or what you continue to go through, but your words are amazing.

Dammit, you're making me gushy.

Seriously, you make me laugh and cry. I usually don't care for that in a person but I'll let you slide 'cause I like you.

January 17, 2007 | Unregistered CommenterMrs. Chicky

It takes a special person to think of and process these things. I think Bug got the right mom. *hug*

January 17, 2007 | Unregistered CommenterB.E.C.K.

I had a mum in the ICU for weeks as a youngster and learned from experience from her and various roommates and friends at physio how to look past "the mask" as you explain it. I've done lots of work with people who have disabilities, and know what it's like to be stared at, or ignored, or talked about (do people think that we can't hear them?) but never got used to it.

(all that by way of saying you said it way better than I can - great post)

January 17, 2007 | Unregistered CommenterHeather

Talk about being envious of someone's writing skills. Thanks for writing this, T. It's the hardest thing for me to keep my mouth shut sometimes when Ben gets the stares.

January 17, 2007 | Unregistered CommenterBen & Bennie

Wow. Just wow.

As I was reading this I couldn't help but think while some people are more likely to suffer the indignities of others' ignorance; we all suffer from snap judgements, inconsiderate words and misdirected contempt. Injustice is something we should all understand in our souls, and yet, we don't. Sad.

January 17, 2007 | Unregistered Commentertoyfoto

Ditto to all. This was in fact an amazing, humbling post to read. I admit I can get uncomfortable when in a situation involving a special needs child, I'm so afraid to say the wrong thing that I don't say anything.
whoops. But what is the right thing to say?
Bug is one lucky man to have you as his mom.

January 17, 2007 | Unregistered Commentermoosh in indy.

When you write like this from your heart I don't know what to say. I'm use to making fun of you...and I can't when you write like this. That would make me a horrible person and we both know I'm like FAR from that...

I checked out the link to try to understand more and I found a quote on the page I thought was pretty amazing...

"A life without a smile is still very much worth living"

As moms we can 'read' our kids. They don't have to be vocal or show expression for us to understand them. The eyes are an amazing window...

January 17, 2007 | Unregistered Commenterkimmyk

It seems your Bug has left you with a special gift. There are many a people in this world that could benefit from that. You have such compassion, tenderness, straight forwardness, and damn you can make a reader laugh and cry all in the same post.

January 17, 2007 | Unregistered CommenterJ

I love what you have written... such brutal, beautiful honesty.

You are a damn shiny soul yourself, T.

January 17, 2007 | Unregistered Commenterjellyhead

wish I could give you a hug right now- you are such a strong woman.

January 18, 2007 | Unregistered CommenterJean

You make me laugh. You make me cry. You make me think. Thank-you!!!

January 18, 2007 | Unregistered CommenterShana

Isn't it amazing the things we don't see until we go thru them ourselves?
I am grateful for the time that my son spent in the NICU because it gave me perspective on the whole "perfect baby" syndrome that so many people have. It allowed me to see deeper into myself and into others.
I am also grateful that he goes to the one school in our district that has both "normal" kids and "special needs" kids. He gets to interact with them daily and I think it has given him the ability to see through those masks at an early age...something many of us didn't have. I still struggle with how to act towards these kids and, even though I'm treating them the same, wonder if they think I'm babying them.
I think your Bug is probably one of the most gorgeous babies I've ever seen. Those eyes, in every single freakin' picture I've seen of him, those eyes pierce deep.
Damn, woman, you evoke a lot of feelings with your writing. Keep it up.

January 18, 2007 | Unregistered Commentersillychick

Something about you...
You make me laugh, cry, and think.

January 18, 2007 | Unregistered Commentercreative-type dad

hi,
Love your blog. Your words are beautiful and very real. Thank you for sharing about Bug. I have found the words comforting. I lost my brother when I was 12. After 25 years my heart still has a deep hole in it.

January 18, 2007 | Unregistered Commentersunflowerct

I just found your blog and I love it.

I did not however know there were rednecks in Canada too.

January 18, 2007 | Unregistered CommenterSurgeon in my dreams

When you write about your Shalebug you are so transparent and honest and real. It is, truly, inspiring.

January 18, 2007 | Unregistered Commenterbubandpie

Your honesty about how you felt is very moving and while some would not or could not see the real Shalebug, you did and that's what matters most.

January 18, 2007 | Unregistered CommenterIzzy

So many will learn from this post, including me. Beautifully woven with love, pain, growth, humanity and honesty. I can see in Bugs eyes, the warmth of his soul and the little light that says, "Yep, that's my mom". Its there...the eyes can't lie.

You are amazing.

January 18, 2007 | Unregistered CommenterEmma Sometimes

Because I cannot even come close to stringing together words that would explain how poignant this post was, I just say wow.

January 19, 2007 | Unregistered Commenterme

What an absolutely beautiful and enlightening post. I always think about the person behind the "mask"; I smile when I see them coming towards me. Then I wonder if they think that I smiled out of pity of politeness. It's really hard. Your honesty is very moving. feeik

January 20, 2007 | Unregistered Commenters@m

LOL, sorry... my last letters on the end of my post are the word verification letters. Not sure how they got in the post. LOL!

... and it's supposed to say: I wonder if they think I am smiling out of pity or politeness.

January 20, 2007 | Unregistered Commenters@m

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