Can I Handle Parenting While Having Sickle Cell?

A weekend with young children prompts a columnist to consider fatherhood

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by Dunstan Nicol-Wilson |

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A few weeks ago, I spent a weekend with new family members, and it was the most action-packed weekend I’ve had in a while. I was exhausted by little people!

I helped set up a 3-year-old’s birthday party. I was a pretend patient for the newest toddler doctors and at the mercy of their demands. I had a blast, but in the end, some aches set in, and I was worried they’d lead to a sickle cell crisis.

But a hot water bottle and pain medication had me right as rain the following day, as I woke up to the sounds of crying. At 7 a.m. on a Sunday, it was time to play with the kids again! I didn’t feel ready yet, though. As much as I had fun, it was great to return home without the sound of babies crying.

Still, I had a heartwarming weekend, and I couldn’t help but think of the family I hope to create one day. I want to be as active as possible in my future kids’ lives, as this wasn’t something I experienced growing up.

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A thoughtful approach

Parenting has a fun side: the endless play, the first Christmas, the snowman you build, the first bike ride. I realized I want to be present for all their first activities. But unfortunately, these warm, happy thoughts were replaced by the harsh practicalities of being a parent with sickle cell.

Because of the aches I experienced this weekend, I wondered if I could cope with the demands of fatherhood. Yes, the weekend I spent with these kids wasn’t the absolute reality of what a typical weekend of fatherhood would be. I also wasn’t the only one exhausted from the weekend. But my exhaustion doesn’t always stop there.

My body can barely cope with my daily demands when I have bad days. How will I cope with the needs of children as well? I won’t always be their invincible pillar of strength and support. What happens when I have a crisis around them? My instinct would be to hide my pain to prevent them from worrying.

However, with all the growth I’ve experienced and the sharing of my experiences, this instinct would be counterproductive to the person I want to be. I’ll need to explain sickle cell to my future kids without worrying them. This openness would unlock another level of vulnerability in me. I can’t yet imagine the strength it takes to be weak in front of my biggest admirers.

I’m sure there are many other challenges of being a parent with sickle cell that I can’t yet comprehend. At least not until it’s a role I play. Life is about adapting to different scenarios, and I can’t underestimate my ability to learn and improve. Of course, I’ll make mistakes, but what’s important is that I understand and continuously try to do better.

Maybe I can only build the snowman briefly or watch from the window to prevent a trigger. But in whatever capacity, I’ll be a father who has sickle cell and yet be fun, serious, and everything in between.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


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