When a Mother Said I Make Parenting My Rare Child 'Almost Look Like Fun'


Eighteen blue, silver and white gift bags, stuffed with contrasting tissue paper lined the table. Aaron and his brother moved from bag to bag, exploring the contents together.

Each bag sported a number from one through 18. He’d made it to 18. We’d made it to his 18th birthday.

It was typical for me to overdo the gift-giving thing, especially when it came to my boys. But since his diagnosis, since the phone call from his pediatrician asking to come into the office without Aaron, every milestone was a grand event. Aaron fist-pumped like a hockey player after a goal, as he unloaded the loot and passed it to his brother. The hockey cards, cash, candy, video games, gift cards 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, and beamed at my boys. I knew my face revealed glimmers of how my much younger self must have looked at Aaron 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 that first drink.

But I was silently celebrating my kid was alive. 

My 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 a grenade had gone off in our family, and we were all walking carnage. So I decided to make a freaking big deal of that birthday. I had been making a big deal out of things since his 16th birthday, truth be told.

We rare disease parents don’t take much for granted, except our own health and sanity, which seem so unimportant when our kids are sick. We do a lot of things that other parents wouldn’t do, don’t we? We live differently, think differently and move forward into the future at a snail’s pace, with cautious optimism as our mantra.

We become more than mothers, transforming into advocates, cheerleaders, bodyguards. We get a PhD in our child, their symptoms, treatment options, and the doctors who know something about their disorder – if we’ve been lucky enough to find them. 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.

At one of the boys’ hockey games, my friend Mailie commented, “Your boys sure love their mom.”

“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 said.

“No, the divorce was nothing compared to all the medical stuff. Aaron’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. “Really?”

“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 with pride 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 differences.

“I’d give it all up, you know. All this time with Aaron, 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.

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