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.