by John Hoffman
*all names changed at family’s request.
Trevor* vividly recalls one of the first signs that the stomach pains he’d been experiencing were more serious than he first thought.
“One day I was changing Skyler. He was in a bit of an uncooperative mood—rolling around and trying to get away. At one point he kicked out his foot and caught me in the stomach.” It wasn’t a really heavy kick. Skyler was only two at the time. But the pain was so sharp that Trevor was incapacitated. “I dropped to the floor like a sack of potatoes.”
Not long afterward, Trevor was diagnosed with Crohn’s disease, an affliction suffered by an estimated 129,000 Canadians. He also has an undiagnosed pain disorder. He takes painkillers that help some of the time. But his condition is often disabling. “On really bad days I can only get up off the couch for an hour or two in total,” Trevor says.
Needless to say, Crohn’s has had a profound impact, not just on Trevor, but also on his whole family. The diagnosis came just before the birth of twin boys. Trevor did his best to be hands-on with the babies (and three-year-old Skyler) during this ultra busy time. But some days he just wasn’t up to it.
Luckily for the family, Trevor’s wife Sarah has been able to shoulder the extra work she has had to take on, including being the family’s breadwinner. Sarah makes a good living as a financial controller, which has allowed Trevor to take on the role of at-home parent. But due to the up and down nature of his illness, some days are a lot harder than others.
For example, one day Trevor and the three-year-old twins were almost home from walking Skyler to school when he was suddenly stricken with severe cramps. “I had to get to the bathroom fast,” But cramps were so bad Trevor could hardly walk. He couldn’t even hold the hands of his three- year-olds. “Daddy’s belly is really, really sore,” he gasped. “Hold onto my belt.” For most of the 10 minutes it took to stagger the final hundred yards home, Trevor was so incapacitated by pain that he was more or less depending on the twins for his sense of direction. Luckily Sarah was home that day and was able to take over once they’d reached the house.
Trevor has more stories he could tell you. Planned family outings that had to be cancelled at the last minute because of sudden attacks. Christmas days spent mostly in bed. The times Sarah, has had to leave work to deal with something when Trevor was really ill. “Luckily, she has a really understanding and flexible employer who considers her indispensible. He’s willing to give her unplanned time off when she needs it because he knows she’ll get her work done at night or on the weekend,” Trevor explains.
Another issue the Trevor had to navigate was how to explain Daddy’s illness to the children in a kid-friendly way that didn’t scare them. ‘We’ve tried to be very open,” he says. “We say things like, ‘Daddy has a sickness, so he has a sore tummy a lot of the time.’ Sometimes when kids are coming over to give me an enthusiastic hug, I have to remind them ‘Be careful of Daddy’s belly.’” But he doesn’t really like his condition to be a daily topic of conversation.
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I sure wish I had some hopeful, encouraging words to close with, but sometimes life, and fathering, are tough.
Mostly I just wanted to honour the experience of fathers living with chronic illness by sharing story (and a big thank you to Trevor!). At least it acknowledges a parenting reality that we don’t talk about very often.
Sometimes parenting turns out to be a difficult journey—not the one you imagined. And often there’s not much people can do but just be as strong and dogged as they can to get through the tough days and then be ready to grab and enjoy the good moments and days as they come along. That applies to any father, but it’s even more important when you are parenting through unusual difficulties.
I hope Trevor and the many other dads and moms out there with chronic illnesses or unexpected parenting challenges are getting the support they need from friends and family. If you know someone in a situation like this, offer your support, and, perhaps even more important, friendship. Parents living with chronic illnesses need all the support and friends they can get.