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How I Talk to My Son About My Crohn’s Disease

A few months ago, I was taken to hospital in the ambulance. I had caught a winter virus from my son, who was kind enough to vomit on my face — twice. Since I don’t have a colon, my system can only sustain being sick out of both ends for about two hours. After that…well, all bets are off. As the ambulance whisked me away, he cried his poor little 3-year-old heart out. When my mother comforted him, telling him that mummy was going to be OK, he brushed her off. He knew that. What he was upset about, he explained, was that the ambulance hadn’t turned on its siren. ‘Cause he loves sirens.

Kids are brutal. But I couldn’t have been happier with his reaction. We’ve always been honest with our son about my Crohn’s disease and its satellite effects. We don’t pretend that nothing is wrong, or when I’m having a bad day, that it’s anything other than what it is. We explain to him; we show him my scars.

Every morning he sees me take my medications. When I’m in the hospital, he gets special boys time with daddy or extra time at his grandparents. In general, he thinks Crohn’s is great — to him, mummy sounds like Lightning McQueen without a muffler. 

Why are we so candid with him? I know not everyone approves. I’ve had people advise me (unsolicited, of course) that I shouldn’t tell him about my illness, that I should hide it from him. They believe that “a child should be a child,” and that by being frank with him about my illness, I’m burdening him.

My response is always the same: So what? He’s a child. Not a Doulton figurine. And, like most children, he’s a lot more aware than people give him credit for. He knows there’s something wrong with me. He can see when I’m tired or unwell, and he needs to learn how to deal with it — not only for my sake, but his own.

As he gets older, things are going happen to him and to the people he cares about. Some of those things are going to be wonderful and amazing, but some are going to be sad and painful. By having to deal with my illness as the rest of the family does, he’s learning skills that will help him for the rest of his life.

He’s realizing that people have limitations and that he needs to respect them. He’s discovering that not everything is about him and that sometimes he has to compromise. He’s learning to be aware of other people’s needs, not just his own.

But he’s also learning that he’s important and that he can make a big difference in someone’s life, even with small gestures. He’s taking responsibility for things that are in his power, and importantly, he understands that he has power.

He’s not afraid to go to the doctor or have his shots. During those rare times he’s ill, he takes his medicine like a champ, and he understands the importance of rest and self-care. He’s gained a highly-developed sense of empathy and an innate gentleness. If someone falls or cries at playgroup, he’s the first to rush over and make sure they’re OK. If someone’s not feeling well, he tries his best to nurture them (in his own way, which usually involves piles of trucks).

Now, I’m not saying there isn’t a downside to my methods. There is. Sometimes he worries more than he should about people being happy and healthy. But it’s an issue we’ve been able to manage with reassurance and more candid discussions, namely, that people aren’t healthy and happy all the time — him included, and that that is absolutely fine. He accepts these discussions and moves on.

You only have to meet him once to see how confident assured he feels, so I know that for him, not sugar-coating what I’m going through works. After all, he is a member of this family (arguably, the most important one), and he deserves to participate in the entire scope of what that means — both the good and the difficult. I can only hope he’ll carry this understanding through to adulthood. If so, maybe it’ll be him turning on the siren one day.

Getty Image by KatarzynaBialasiewicz