Uncle

Rob's dad is in the hospital.

We aren't certain exactly what is wrong, but he isn't doing so well. Rob's brother and sister-in-law are with him. He is undergoing a series of tests and we are vacillating between whether to stay in Quebec and try to maintain some sense of normalcy for Graham or to make the almost eight-hour drive home the day after our arrival.

Needless to say Rob and I are finding it difficult to eat or sleep, let alone relax.

Universe, God, Karma, whoever or whatever you are?

Uncle.

Just uncle.

Fear

Despite my recent assertions to the contrary, had you been in the parking lot of my local supermarket last night you would most certainly have wondered if I were a bad mother.

You would most certainly have been shocked at the sight of me, right down in my child's face, screaming at him at the top of my lungs. You would most certainly have wondered why I continued to rant and rave long after the wee thing ducked his head away from me and long after tears started to flow down his ruddy cheeks.

You might not have realized that I was more frightened than I have ever been in my life.

Graham and I had stopped off at the supermarket on the way home to pick up the steaks for the barbecue and, as usual, I was pretty lax about letting him gleefully race up and down the aisles. This store is not the one where I saw my life flash before my eyes, it's a small, local store where I've been going for years and where everyone knows both of us by name.

Once into the busy parking lot however, as is my habit, I clutched Graham's hand tightly, pointed out all of the moving cars and sternly admonished him to stick close to my side.

Except he didn't.

Just a few steps out of the door he shrugged off my hand and ran ahead of me with a mischievous giggle.

"Graham!" I shouted. "Get back here right now, Graham!"

But he ignored me and continued running.

And then I saw the car.

The car was backing out of a parking spot at a rapid pace, the kind of jerky, jaunty pace a driver sets when they are absolutely certain there is absolutely nothing in their path.

Except there was.

I dropped my groceries and started to run, only vaguely aware that my screaming had a throaty, desperate quality that sounded unlike anything that had ever come out of my mouth before.

But Graham didn't stop.

There was a sickening screech of brakes just as the car's back bumper kissed Graham's back. As I ran towards him, the woman driver turned and caught my eye: the terror on her face was a perfect reflection of what I was feeling.

Oblivious, Graham turned to me, casually patted the car and giggled.

That's when I lost it.

I have never yelled at Graham like I yelled at him then. I yelled at him for a good five minutes in the parking lot and I yelled at him all the way home.

I gave my anger and my fear full license because I wanted Graham to remember it. I wanted to traumatize him, to cement in his head that bad things, very, very bad things happen when little boys run into the paths of speeding cars.

It wasn't until we pulled into our driveway that I lost steam. Graham was sobbing quietly and I was teary-eyed. I parked, released him from his car seat, brushed his tears away and hugged him to me tightly.

"Mommy was so scared Graham. You ran right into a car back there, right into a car."

He sniffed and buried his head further into my shoulder.

"You could have been killed Graham, do you understand that?"

More sniffles.

I brushed away my own tears.

"I love you more than anything in the world Graham. If something had happened to you back there Mommy's heart would be broken forever. Do you understand that?

Mommy's heart would be broken forever".

And we hugged then for a good long time before he raised his tear-stained face.

"I understand Mommy, I understand."

He doesn't, of course, but such is the nature of children and of childhood.

I can only pray my son, and my heart, survives it intact.

Knocked Off My Knees

You're probably thinking that I didn't have the heart to read it.

But I did.

I read every word of Knocked Off My Knees, the book that my former university roommate and dear friend Grace wrote about coping with chronic illness.

I read every word of the book that I didn't even know existed until I attempted to respond to Grace several weeks ago, more than two years too late, and learned she had succumbed to lupus-related complications.

And while I felt my heart breaking just a little more with every page I turned, I have since carried Grace's words and her attitude with me as a kind of talisman against the fear and uncertainty that the spectre of cancer has recently visited upon me and my family.

Grace was my dormitory roommate in my first year at university. I met her just moments after parking the big beat-up, pickup truck I had driven, alone, to school in a big city several hours distant from my tiny home town.

It was 1989 and I was the stereotypical small town girl on the loose - big hair, tight jeans and too much makeup. I was there to party, make no mistake, so I hope I can be forgiven for admitting that my heart sank just a little when I met my roommate Grace.

Grace had sensible clothes, thick unruly hair and a face devoid of makeup. She was sweet and soft spoken, not loud and flashy. She had a way of pausing before she spoke, of really thinking about what she was going to say, that seemed awkward to me - someone who was accustomed to judging a person by the speed at which they could deliver snappy one liners.

Grace was, I soon learned, one of those rare sorts: a deeply committed Christian who actually weighed her every word and act to be sure they would do justice to her beliefs.

Grace lived her faith, truly lived her faith, and once I got over my shock - "You've never been to second base with a boy?! You can't remember the last time you saw a movie?!" - I came to deeply, deeply admire her.

I admired Grace because, although she chose to love God, there was nothing in her manner to suggest that she considered herself above the dozens of girls in the dorm, myself included, who chose instead to recklessly demonstrate a love of alcohol and parties and football players.

Grace didn't judge and she didn't preach: she didn't have to. There was a thoughtful confidence and calm about her, an inner peace - if you can forgive the cliche - that spoke volumes about the quiet rewards of unshakable faith.

After our first year as roommates I moved off campus, but remained friends with Grace. She visited my parents' home with me and I was a guest at her wedding, just half a year after graduation. But we didn't stay in touch much after that.

If I am honest, I will admit that there was a bit of a reluctance on my part to reconnect with Grace over the years. As time passed I put her on a bit of a pedestal. Throughout my lonely, single years as I struggled to find someone to love, I imagined her with a house full of beautiful and pious children and expected that she might pity me and my foolish choices.

Imagine my surprise, and my regret, when I learned in the book that she and her husband struggled with infertility for years and that lupus first struck, and left her a quadriplegic, when her first and only adopted child - a son - was less than a year old.

Grace sounds in the book just like I remember her: incredibly centred and pragmatic with regards to the injustice of her lot. Incredibly strong and full of faith. Knocked Off My Knees is not a philosophic rumination on living and dying, but rather a clear-eyed view of what patients endure and how they and their family members should conduct themselves, must conduct themselves, if they want to maximize the benefits of our medical system.

I think of Grace a lot these days. I wonder if her faith ever wavered after she fought back to recovery and published her book, only to see the disease return. I even wonder if she ever railed against God for not allowing her to live to see her son grow to manhood.

But I do not think that she did.

I also don't think she intended the book to make people feel sorry for her, but I am nonetheless overwhelmed with sadness at what she endured. Given that I was not able to offer any comfort to her during her time of need, I feel compelled to take away from her words some sense of meaning: I feel that I owe at least that much to her memory.

My life has not been easy these past few months. My beloved mother-in-law is fighting cancer and I am struggling to help both my husband and my son cope. There has been darkness these past few years that I have only hinted at here - sickness and stress and worry that has tested my strength and my marriage.

But I wonder if there was a reason why I decided, after all these years, to finally reconnect with Grace, the person who personified her name like no one else I have ever known. I wonder if I was meant, at this time in my life, to read her words and remember her strength and her faith and her calm.

And when I read this passage, at the closing of her book, I wonder if she isn't speaking directly to me.

"I don't know how healthy I'll be tomorrow or next week, or next month. But today I feel quite strong and well and am so thankful for that. All I can do is accept the unalterable, and wonderful, truth - it's in God's hands."

I like to think that she is.

Amazing grace

Rob and I dined with grace personified on Saturday.

We had dinner with Doreen and Keith, the parents of my late friend Julie. Since Julie’s death 13 years ago, we have made an annual tradition of dinner in her favorite restaurant on her birthday, though a monster snowstorm postponed our plans a few weeks this year.

Doreen and Keith represent everything I want to be, as well as everything I fear.

They have endured the death of their child and sometimes to be in their presence and to contemplate that is terrifying.

Because no one really talks about the fear that is born along with a baby. No one explains that once you have a child, you are condemned to live every single day with the cold, hard fear that you could one day lose that child. You push the fear away as best you can, of course, yet it is always there, lurking behind every happy moment, shading every hopeful thought.

Julie’s parents were forced to look that fear full in the face. They did not beat the odds, the odds beat them. I have written about the role I believe luck plays in the health and well-being of our children: I feel guilt-ridden sometimes celebrating my good luck knowing that theirs has been so unspeakably bad.

And yet Doreen and Keith have shown me that it is possible to endure the death of a child and to do so with grace, dignity and an appreciation for the beauty and pleasure that life can still offer.

They have traveled the world, separately and apart. Doreen has visited Nepal and listened to the Dali Lama speak in India. Keith has crazy stories about business dealings in China and the Middle East. They have white-water rafted down the Kannanaskis River in the Rockies and searched out the best crème brule in Paris.

They regularly entertain a wide circle of friends from all walks of life. They speak passionately of politics and social ills and human rights. They are compassionate and articulate and interesting and funny.

Doreen and Keith know more about pain and loss than most of us can imagine, but they have never once struck me as bitter. They seem to have taken their private anguish and used it as a means to strengthen their connection with, and empathy for, others.

The more time I spend with Doreen and Keith, the more I understand how it came to be that Julie was such a remarkable person. And as each year passes and my friendship with her parents grows deeper, I imagine that Julie has orchestrated our dependence on each other, watching and making sure that we each provide the other with what we all need most in her absence.

To Doreen and Keith, I imagine I provide a link to their daughter and a fresh perspective on her life.

To me, they provide proof positive that even the manifestation of someone’s worst fear is no match for the magnificence and the resilience of the human spirit.

Tears, fears and gratitude

I read something this week that made me cry.

Something that brought back the fear – the cold, cold fear – that Rob and I faced the first few months of Graham’s life.

It was this exquisitely written post over at Blithely Babbling and it made me cry because I have been there. I have clutched my sweet baby to my chest, blinked back hot tears and thought, Let us alone, he is perfect just the way he is, even as insidious tentacles of doubt slid over the edges of my heart and squeezed.

From the moment my water broke the circumstances of Graham’s birth proved that fate laughs at probabilities. When he finally arrived it was with an irregularly-shaped head which protruded markedly out the back – like a football. We were told it would probably resolve itself in a few days and that the anomaly was commonly referred to as a prominent occiput.

Except a prominent occiput isn’t that common, not really. Not even for babies who spend the whole time in utero in the frank breech position like he did. Or babies who lose more than a pound in the days after their birth and fail to regain their birth weight for almost a month like he did.

At Graham’s three-week check-up the midwife weighed him and then examined his skull with a grim expression. He was probably fine, she said, except…

Except that his prominent occiput was unresolved. Except that Graham wasn’t gaining weight like he should be. Except these things could be symptomatic of something bad. Something very bad.

He could be fine, she said. But if not - if not - I would need to learn to manage it as soon as possible.

I left in a cloudy haze of tears, clutching a referral for a pediatrician specializing in neurology and leaning on my mother who could only hiss indignantly: There is nothing wrong with this baby!

Oh how I wanted to believe her. We went home and I remember crawling into bed with Graham and sleeping for hours, waking only occasionally to nurse and weep, my tears falling one after another onto that dear, misshapen head.

The next few weeks were among the most difficult of my life. After swearing mom to secrecy, Rob and I decided not to tell anyone else in our family. It seemed selfish to burden others with our worry and we couldn’t imagine fielding questions when we could barely function under the weight of our own fear.

Graham thrived over the next few weeks. He smiled. He started to gain weight. I actually looked forward to our appointment with the specialist, sure that it would be our last.

But it wasn’t. Graham could be fine, the specialist said. Was probably fine even, except…

Except his prominent occiput was still very, very prominent. Except he was still very small. Except these things were sometimes, rarely but sometimes, symptomatic of a severe disability.

We were given an appointment for an exam at Toronto Sick Kid’s Hospital – one of the best in the world. I was sent home again to wait and worry and keep the blackness at bay the only way I knew how: by loving my baby ferociously and praying to every God in existence.

The next few weeks were spent in constant negotiations with fate: my heart and mind hourly brokering deals, making promises, swearing vows. I experimented with ways to cope. I remember wondering if I could distance myself, try not to love him so much in order to lessen my own anxiety. I remember being flooded with guilt just a moment later that I even considered trying to withhold my love when he so obviously needed it.

When Graham was two and a half months he was examined by a pediatric neurosurgeon at Sick Kids Hospital. In less than 10 minutes the doctor delivered his verdict: Graham had a funny-shaped head.

It’ll probably get better, he added casually, but if not he’s got great hair.

And just like that someone confirmed what my heart had been telling me all along – that my son was perfect.

I do not pretend to begin to know what it is like for other mothers who are denied the good news that their very soul longs to hear. I have only dipped a tiny toe in the swirling waters where daily, parents of special needs children must battle upstream.

But I like to think my experience has left me just a little bit more empathetic. And I like to believe it has left me just a little bit more grateful.

If that’s possible.

Fear and loathing

While I lamented the endless screaming that accompanied Graham’s trip to the doctor earlier this week, I neglected to mention one rather important outcome of the visit.

Graham has an appointment with a pediatric orthopedic specialist next month.

He has an appointment because he is pigeon-toed and by that I mean that his toes point in, causing his legs to flail out like little windmills when he walks and especially when he runs. And while that is a relatively common condition among two-year-olds, the doctor agreed that further scrutiny would be wise given that it is quite severe in his case.

He might grow out of it, but it’s best to get it looked at and see if it can be corrected before he gets older, she said. You don’t want other kids making fun of him.

Her words stopped me cold.

Making fun of him. Other kids. Making fun of my Graham.

It is terrifying, this thought that anyone could possibly reject the gifts my precious child offers. That anyone could diminish him just for being so wonderfully, uniquely himself.

Years ago a co-worker talked to me of his two teenage daughters. They are identical twins, but one was more outgoing and was thus considered prettier and more popular by their peers. They had come home from a dance in tears, he said, after the extroverted one informed her quieter sister that the young man she last danced with had made gagging faces behind her back to the amusement of the other kids.

I’d like to **@$#** kill that kid, he said. I’d like to rip his *%#@** face off.

I remember being surprised by his vehemence, by the rage in his face. But now that I’m a parent I understand it completely.

We will send our children out into the world and the world will sometimes be unkind – it is ever thus. But still, the idea that the apple of your eye, the heart of your heart, will be rejected or humiliated even, and that you are powerless to stop it, is sometimes too much to bear.

I imagine my Graham, running joyously out into the world with his dear, little legs flapping like windmills. I imagine his peers laughing and him stopping short, blinking in surprise to have been met with ridicule and derision.

And just the mere imagining of it produces a frustrated, impotent rage that gnaws at my chest like a demon possessed.

But in addition to my rage there is fear.

There is fear because despite having endured this and this, I’m afraid that the very hardest part of parenting still lies ahead.

Of ponies and nightmares

Is it possible to qualify fear?

Does it make sense that while, of course I fear that someone could harm my child, my most gut-wrenching fear is that somehow Graham will come to harm as a result of my failure as a mother?

To be a parent is to be afraid that a boogeyman lurks around every corner. That’s a given. But it is stories like this that reach inside my heart and squeeze.

Last week a 17-month-old baby died after being left in his mother’s car when she forgot to drop him off at daycare. She only realized she had left him in the car when she returned to it after finishing her seven-hour shift as a waitress.

Stories like this break me apart because they force me to search a deep, dark corner of my soul and confront my worst fear and my reoccurring nightmare: that I am that woman.

Let me explain.

When I was about ten years old I became completely enamored with horses. I wanted a horse in the worst way and the acquisition of one soon became my obsession.

My father was skeptical that I was mature enough to handle one, but I promised to get up before dawn to feed and water it. I begged, I pleaded. I vowed to devote myself, night and day, to the care of that animal.

My father finally relented and called a farmer who kept Shetland ponies up the road. We acquired Star, a frisky stallion who had never really been ridden and was used to roaming several acres unfettered, with a number of adoring mares.

Not surprisingly, it was a bit of a disaster. Star didn’t like being ridden and he didn’t really like me either. His care was a constant struggle. I got up every morning and tended to him before school. I raced home to graze him every evening. I spent countless hours trying to break him into a saddle and was nipped, kicked and thrown for my efforts.

After about a year my father suggested that perhaps Star would be happier back in his old home. I feigned sadness, but mostly I was relieved. Star was too much for me. While he had never, ever been mistreated, I was simply too young and immature to shoulder the responsibility of his care. So back he went and that should have been the end of the story.

But it wasn’t.

The nightmares about Star started when I entered the teenage years with all their attendant pressures. They have continued on a semi-frequent basis until less than a year ago. They are always the same; I am enjoying myself with friends, laughing and carefree when suddenly it hits me, Star! I completely forgot about him. It has been days, weeks since I have tended to him! He must be starving, perhaps even dead!

I awake, gasping for breath, overwhelmed with guilt, fear, and a crushing sense of shame and inadequacy. Even after reality sinks in, I am shaken to my core.

These kinds of dreams, I am told, are common for people like me: people who have inordinately high expectations of themselves. They are textbook, really. It doesn’t take a psychoanalyst to determine that Star is symbolic of my fear that I will let down someone who depends on me.

What does this have to do with Graham?

In a practical sense: nothing. My child could not be more loved or better cared for. But in a metaphoric sense: everything. Motherhood is fraught with feelings of inadequacy and anxiety. Of fear that somehow we are not meeting the needs of our children.

In the dark recesses of my soul I fear that Graham is my Star. He is the responsibility I will never be able to live up to: he is the gift I do not deserve.

And while my heart breaks, shatters really, to think about that dear little boy who died when his mom just forget about him, I can’t help but also feel shattered for his mom - the woman who is quite literally living out my worst nightmare.