Visions of Grace

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And I do.

Thank you Bug.

Lost and Found

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

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

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

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

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

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

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

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

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

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

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

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

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

Despite me and my inept parenting.

It truly is a marvel.

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

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