Sunday, June 22, 2008

Sliding Doors

Kristin has been writing about sliding doors lately and it's been something on my mind as well. The idea that a moment can change the course of your life, or that fate might ultimately lead you to what you deserve, good or bad.

I see her nearly daily. I wait for her as I cower behind the curtains, wishing for one-way glass so I wouldn't have to hide so awkwardly. She is the ghost that haunts me, the reminder of what could have been. She is the mother I hoped I would be if the hand I was dealt wasn't a flush.

The first time I saw her, I wept immediately. Petite and Asian, her type is common in my neighbourhood. They don't often wish to be noticed and somehow blend seamlessly with the cityscape. Had we not have had the birth story we did with Nate, I may not have noticed her either. She would have been just another passerby; people we live next to whom we smile at but never socialize with.

She caught my eye because her son, age 5 or 6 was pushing a stroller. At first glance, the only thing odd would have been that a boy was pushing a pink stroller. But I could tell his story from his gait. He stumbled awkwardly, cried out as if in pain or frustration, wanting to give up. But she, this strong mother, was not having any of it. She urged him on, encouraging him, pushing him further. You see her son has cerebral palsy.


It was day three of our ordeal with Nate. Frustrated with not understanding what was going on, not knowing why he was having seizures through the anti-convulsants or what kind of future we would have with our brain damaged boy, I opened the file. I made a mental note of some of the diagnosis and called my sister.

"Google prenatal asphyxia," I asked her. The answer I heard back was garbled mush, equal to Charlie Brown's teacher talking. "Waa waa waa waa waa, can result in cerebral palsy."

"Well, we may not have a major league ball player, but we could have a Special Olympian," I turned to Jan, trying to keep things positive. Trying to convince myself that it wouldn't be so terrible.

The specialists were no help in easing my confusion and angst. "He will likely have mobility issues," they declared matter-of-factly. The MRI had shown massive damage to the left side of his brain. Still, they couldn't exactly say why. The right side of his body would be weak, they claimed anyway.

"But he wants to put his right hand in his mouth, and he's putting his right hand in his mouth," I would argue. "That doesn't necessarily mean anything," the OT would reply. I would be crestfallen, feeling knocked back a step. "How can anything be wrong with him?" I would ask defensively. "Just look at that Bermuda Triangle below his bottom lip. Have you ever seen anything so perfect? How can someone that perfect not be able to walk?"

I decided I was going to try and ignore them. I wrote down my goals in a tiny notebook and each day I had our friends and family put their thoughts, energies and prayers towards one goal. I guess you could call this The Secret, but it was all I could do to keep from going crazy. My little boy was spending the beginnings of his life in a glass box.

My goals grew bigger with each passing day. From "Today I'd like his kidneys to function" to "Please make him stop seizing" to "Let the drugs wear off enough to make him awake for breastfeeding" I was relentless, parcelling my wishes into bite-size pieces. I knew in my heart of hearts that if I could just nurse him, I could somehow heal him and make him better. I don't know if that's true or not. There are certainly many moms who have stood by sick kids and fed them formula. But I was so helpless. It was the only thing that I felt was in my power, the only thing I could physically do for this little being who had been safe in my tummy only a week before.

Each morning the group -- doctors, residents, OTs -- entered the NICU to do their rounds. Each morning I was excused out of respect to the parents of preemies. But towards the end of the first week, I was in the NICU quite frequently, trying to heal the brain of my boy with my breastmilk. They eventually let me stay for the rounds.

"We have good news," they exclaimed. "The MRI shows signs of brain damage in very specific parts of his brain. It's as though a clot got lodged as it moved through. So we're fairly certain that he had a stroke!" The resident was smiling at me like we'd won the lottery. I didn't see how a newborn having a stroke could ever be a good thing, but I nodded and smiled warily.

He seemed to pick up on this. "Prenatal asphyxia causes the entire brain to be damaged. The prognosis is much worse. But a stroke only damages certain parts of the brain. And because their brains are essentially not programmed yet, the chances of a normal life are greater."

I'll take Stroke for $1000 Alex. But the prognosis didn't change much. "Due to the size of the stroke on his left side, he will likely have issues with mobility and we'll need to keep monitoring him." By the time the neurologists came to explain to me that they still didn't know why this had happened, I was done. I looked the cutey brain doctor in his handsome eyes and said, "At this point, I don't really give a shit WHY this happened." I was over the "why" and onto the "how." How could we leave this place? How could we make our son better?

The drugs that had kept my son asleep for most of his first week had worn off. The tubes had been pulled out. He was breathing on his own, feeding on his own and somehow, on the 9th day, we were sent home.


"God heard our prayers. He smiled on us," my mother would say each time Nate passed a milestone. This would make me furious -- still makes me livid. I look at the mother across the street and I think, "Did I pray harder than her? Did she not cry and beg and sell her soul on the off chance that her son could be OK?" I find that hard to believe. Anyone who has been given the honour of parenting a child would choose their own legs to stop walking if it meant their son or daughter could take the steps to their future.

I watch her now, strapping her child's foot in some jerry-rigged contraption to keep his feet on the pedals. She is forcing him to ride a bike. Forcing him to use what he has, to fight the parts of his brain that are dead, throttling him forward towards some sense of normalcy.

She is my hero. I stare and stare and stare, wishing the tears away. Grateful that my son somehow recovered. Releasing the stale air from all the times I couldn't breathe in the meetings at the follow-up clinic. They watched him so closely, shook their heads in disbelief as he defied his odds. "How he can do that after the stroke he's unbelievable," they would marvel.

My hero notices my gaze. She smiles. I wave. She waves back. She looks at my son running full force towards our house. She doesn't know that we were almost sisters.

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