Erik Quinn: The Heart of a Family: Breaking the Law of Averages

Sunday, August 19, 2007

Breaking the Law of Averages

He came toddling out of his bathroom, deftly maneuvering around the toys strewn over the shiny floor in a way that would have made his therapists proud. In his strong hands was his little green and blue plastic stool. He rounded the kitchen island to where I worked and put the little step in front of my heavy, pistachio-colored mixer. Amazed at what he had just accomplished for the very first time on his own, I nudged the step with my toe a couple inches to where he could best see me work. He confidently planted his brace-sturdy foot and stepped up, grabbing the counter firmly and craning his neck to see over the rim of the shiny bowl. Almost. Not quite tall enough yet.

I read the article again today. My brain finally absorbed that one sentence. The one that stated that what is written on my child's chromosomes means his lifespan would be, on average, 50 years. From all I know now, this was not a surprise to me. However, seeing this in print written by a stranger made me inexplicably angry, which was a complete surprise to me. I suppose I had never dared ask anyone, even the geneticist, that particular question before because I didn't want to hear it. Now I had the answer, and I didn't want the damn thing.

I coaxed the sticky honey from the measuring cup with a rubber scraper, making a ridiculous show of it for his benefit, like Tom Cruise mixing drinks for the beach bunnies in that old movie. I found myself humming "Kokomo." I held the measuring cup high in the air and let the honey drip down like a thick, gold ribbon into the bowl. Up and down. Up and down. He laughed and said, "S'mixer!"

It's not like he has serious health problems yet. His upcoming echocardiogram will hopefully soothe my blooming fears. Hopefully. I hate not knowing exactly what missing an essential component in his body will mean as he ages. Looking at the big picture, I can see that we are the lucky ones. There are some beautiful kids with this who are very ill. I should be on my knees thanking God we have it so good! This kid could very well live to be one very friendly, old fellow.

I pushed the stubborn switch on the mixer to the right and watched the cage-like attachment whirl to life. The motor's growl made him jump at first. After that, he was very calm and interested. I stooped to pick him up in my arms and held him so he could watch the separate ingredients swirl into a thin, sweet mixture. After they were adequately combined, I put him back on his step and tipped my plastic bowl to sprinkle the dry ingredients into the sweet batter to thicken it.

Besides, even if he was "average," which he doesn't seem to be, that's half a century. If his kidneys or cardiovascular system did magically fail at that milestone, I'll be 84 years old. I might not even make it that long. Maybe we will both go at the same time, and I would never need to live a day without him. Living without him would be like living without my heart.

I unlocked the bowl from the body of the mixer and turned to spoon the batter into the mini muffin cups that glistened with nonstick spray under the kitchen lights. Erik traveled with me with his step to watch this and actually obeyed my instructions not to plunge his thick fingers into the batter for once. He just watched quietly and let me think.

God, I hope I never have to bury my son.

I opened the oven behind us, reminded him that it was very hot, and slid the wide baking pan full of cups of batter into the heat. The door shut with a clunk, and I pushed the button on the console to illuminate the oven's innards so he could watch the muffin tops grow dull and swell. Looking out the kitchen window, I saw his baby swing gyrating in the wind and rain as if it held a hyperactive ghost, and the little yellow straps that used to go around his tiny body hung limply. No more baby.

I'm almost 40 myself.

I returned the containers of dry ingredients to the baking cupboard above the oven and pushed a damp sponge across the counter tops, smudging tiny drifts of flour dust into drying, annoying swirls. I washed the sponge and began scrubbing again until they vanished. He lost interest in my new chore without any spinning equipment and disappeared, off to find another rainy day adventure.

Fifty's simply not good enough.

I slowly filled my lungs with the warm air of the kitchen and the undeniably cheerful scent of grated lemon peel. I flipped the lights off and followed him around the corner into the unknown.

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Blogger Katie said...

Oh Nance...
its so hard to think about the unthinkable... I didnt realise their average lifespan was only 50.
I never asked. i never read about it. i didnt want to know.
Eric is healthy. So is Jaiden.

9:40 PM  
Blogger Teresa & Shawn said...

I don't even know what to say except you are not alone. Given Clare's heart history, this is one area where I don't venture into the "what if's."

5:50 AM  
Blogger Tara said...

Wow. When I read the lifespan in the article it made me pause and think what in the world I would do without Payton. I had always wondered, but never asked. You're right.....50 years just isn't long enough.

10:39 AM  
Blogger Julie said...

My son Noah is 19 months old. He has William's. He has already had heart surgery to repair his aorta at 6 months old. I did not realize the life expectancy was 50. I feel the same way as you, maybe we will go at the same time.

11:03 AM  
Anonymous Gua said...

How many times I've been asked about Williams life span, and I've lied. I always say, "Oh, it's no different." But I didn't know, because I never had the strength to try to find out. And you know, I think the next time I'm asked, I'll lie again. There are things I must face, but this is one that as long as I can deny, I will.
Love, Mom

5:20 PM  
Blogger Laura said...

I remember when I read that statistic for the first time. I got a wave of nausea and a panic attack--still do every time I think about it. My mind starts with.....Michaela is 8, does that really mean she could only have 42 years left.....Well, you know how the thoughts go after that, you've captured my thought process quite well in this post!

4:23 AM  



10:47 AM  
Blogger kathi said...

Lord have mercy, girl...I love the way you spin a story. Amazing the way you weave raw emotions with the written word.

Erik is not 'the norm'. As a mom, I can promise you that we've all had these thoughts. I pray with all that I am that I go before my kids, because I seriously doubt my strength to make it without them in my life. However, I've seen so many parents lose their children and have to live with the loss. How, I dunno, and I pray I never do, but both of my grandparents lived longer than most their children and I know it's something a parent never gets over.

Thank you for sharing your heart and love for Erik with us. We're all so much better for it.

2:27 PM  
Blogger Kim, Grandma to Ava,ws said...

Aunt Paula lived to be 57 years old. She died because she had a tummy ache and took every medicine in the house to make it go away. The ensuing organ failure is what took her, not Williams Syndrome. I guess WS was indirectly responsible, because Paula didn't know that the medicines could actually harm her.

Please try not to think 50 years ahead. Erik is doing so well, Nancy, better than Aunt Paula ever did. My gut tells me that he is going to be your joy for a long, long time.

Love to you,

6:19 PM  

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