At What Cost?

Eighteen blue, silver and white gift bags, stuffed with contrasting tissue paper lined the table. Each sported a number from 1 to 18. However typical it was of me to overdo things with gift giving, especially when it came to my boys, this was a milestone made grander by the medical ordeals my son Adam had endured to make it to here.

Adam fist pumped as he unloaded the loot and passed it to his brother. The hockey cards, cash, candy, and a couple of much higher priced items were an elaborate haul. The last bag contained coveted tickets to an All-Star game featuring his favorite team. I stood back, my face revealing glimmers of how my much younger self must have looked at Adam when he was a baby. I felt the heat, the slow roll of tears down my cheeks and busied myself with pulling away the refuse of his unwrapping from around his feet.

I knew what other moms did on their son’s 18th birthdays. There would be backslapping and congratulating and joking about being legal to vote or to have a first drink. I stood back, stomach clenched against what might have been. A couple of rounds of the pleading mantra that had become the soundtrack of our lives rolled by in my head, “please not my baby, please not my baby.”

We were two years into the odyssey with Adam’s ultra rare, incurable disease, and around that birthday, we caught a break for a couple of weeks. There were more regular days than hospital days, and fewer phone calls to remind us our lives had registered an 8-point earthquake from which we wouldn’t be rescued. So we made a freaking big deal of that birthday.

We do a lot of things that other parents wouldn’t do, we parents of rare kids. I’m not talking about extravagant presents. We do absolutely everything we can and more. We become more than mothers, transforming into advocates, cheerleaders, bodyguards. We get a Ph.D. in our child, his symptoms, her treatment options and the doctors who can provide it. While we make the calls, keep the appointments, talk our terrified kids into painful tests and relentless pokes and so many repeat scans, we end up in relationships with our children that are more complex than the other parents we know.

“Your boys sure love their mom,” my friend Mailie said. She made the remark outside the dressing room after one of boys’ games.

“What makes you say that?” I asked.

“They actually choose to spend time with you. You’re always together. I’m so jealous.”

“Ya, but think about why that is. Then you won’t envy it. We spend a lot of intense time together in places where they don’t want to have to go without me.”

“You mean because of the divorce?” Mailie asked.

“No, the divorce was nothing compared to all the medical stuff. Adam’s stuck going with his mother everywhere. I’m sure he wishes it were different, that a lot of things were different.”

“I don’t think he sees it that way, actually,” Mailie said. She had known my boys for about eight years, and felt qualified to surmise.


“He wouldn’t be as well as he is without you. Remember that will ya? It may be a life-saving necessity, but you guys make it almost look like fun.”

I thought about this. She wanted me to thank her. She wanted me to beam pridefully for a moment, confident in the knowledge that I was one of the cool moms. But how could she know that in an odd way she had shone a light on the deep sadness, the perpetual grief in our lives, and on our difference.

“I’d give it all up, you know. All this time with Adam, for just one day when he could get up and forget he is sick.”

Closer than other mothers and sons, hell yes. But at a cost no child should have to pay.

Writer. Book coach. Collaborator.

I help exceptional coaches and thought leaders go from idea to book. Author of Loving Large, available April 2020, pre order now on Amazon.

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