We were golden … until we weren’t. Kevin Luby, A Life Short & Loud
“Living well is the best revenge …” It was the phrase on my parents’ favorite cocktail napkins and one of the aphorisms I grew up on. My parents believed in hard work, doing your best, helping others and that everything would work out in the end. Ambition, competitiveness, striving were all valued but so was accepting that failure and disappointment were also a part of life. We faced the kinds of challenges that many families do — financial hardship, illness, divorce, mental health struggles, estrangements and hurt feelings — but nothing that couldn’t be overcome or dealt with.
Despite the ages of my parents when I was born (sixty and thirty-eight), my first heartbreaking loss was my cousin and second father who died at the age of eighty-two. A year later, despite being diagnosed with cancer at the age of eighty-three, my father died of old age at 102 1/2.
After working for three years at my dream job and finishing graduate school, I married the boy, now man, that I met on the first day of college. We had two kids, a boy and a girl and acquired a sweet, calm yellow lab. We lived in a lovely house in a quiet neighborhood with no sidewalks or street lights. The kids could walk to school, and I worked once a week in both of their classrooms. Our lives were full of lovely rituals and traditions — waffles or pancakes with maple syrup and bacon on Sundays, pizza for dinner at least once a week, Easter egg hunts in the backyard, leprechaun footprints in the kitchen and kids’ bathroom on St. Patrick’s Day, A Christmas Story and homemade sugar cookies to decorate on Christmas Eve. We had a shiny life .. until we didn’t.
When Jimmy’s increasingly frequent and increasingly painful headaches turned out to be caused by a malignant tumor, it was a shock on so many levels. Things like this “didn’t happen” in our family. I can see myself sitting in the backseat of our car with my arm around Jimmy on the way to the emergency room to meet the pediatric neurosurgeon who was waiting for us. As Dan sped through the dark, quiet streets, I can hear myself saying over and over, “We are going to get this thing removed, and you will be just fine.” And the truth is, I believed it. I thought I could make it better, fix it, protect my child through sheer will alone.
Finding out that you aren’t golden is a body blow. One minute you think that you’re “living right”, working hard, keeping your kids safe. The next instant, you discover that there are forces bigger, stronger and far more powerful than you are that can blow up your world, destroy your sense of safety, threaten one of your beloveds and irreparably change your family.
We knew we were lucky. Our mistake was believing that our luck would continue indefinitely, that we had control, that we could fend off any and all threats. We didn’t know what we didn’t know .. that we are all just a phone call away.
What we also didn’t know is that with adversity and life threatening illness comes a deep need for other people. Friends and family matter in a way that they don’t when life is rosy and going well. Comparing myself, our family or the kids to other people became unimportant and irrelevant. Instead, words like “stable”, “unchanged”, “enough”, “together” became what made me happy or enabled me to let my breath out. Instead of wanting to be different, I craved connection with other people who understood how terrifying it is to have a child with cancer, parents whose children had survived and parents who had survived their children’s deaths. Being special, gifted, chosen meant being alone and isolated, the exact opposite of what I wanted and needed most.
Although it’s true what they say about the club you never wanted to belong to, it’s also true that I’ve met some of the most incredible humans I know in that club. People who inspire me, motivate me, encourage me and carry me on my worst days. It’s the terrible tradeoff that comes when you realize that your life is no longer golden, and that the people who are standing with you, helping you find a way forward and loving you hard, are the ones who will help make life worth living now that your beloved son is no longer here.