The Powerful Lessons My Son Picked Up Along the Way

Columnist Cazandra Campos-MacDonald is proud to hear her son self-advocating

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by Cazandra Campos-MacDonald |

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There’s often a children’s time at church when the kids race up to the front and sit with the pastor, where a message is geared to the children. When my husband leads this moment during worship, he asks questions and even takes the kids on “field trips” around the sanctuary.

It’s a sweet time for the congregation, as they hear very interesting answers from the children. But unfortunately, it’s also a time that strikes fear into the hearts of parents.

“What is my child going to say?” “Please stop picking your nose!” “I’ve told her a million times how to sit when she wears a dress!”

Yes, this time is anxiety-ridden for parents. I’d often stare down my sons, praying they would feel the energy of my eyes screaming for them to behave. I’m glad my boys are past that age.

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My youngest son, Caeleb, is 16 and attends the church I serve. Every Sunday, he’s responsible for recording the service. Our time together each week is very special. I was recently taken by surprise by how he interacted with a couple of congregation members.

During the coffee hour after worship, Caeleb came in for doughnuts. He’s great about visiting with people, and his joyous demeanor makes for great conversation. One woman had never met him and asked, “Do you also have hemophilia like your brother?” He told her that he did, and then she started asking questions.

I wanted to jump in immediately and respond, but before I could, Caeleb began to answer. Not only did he tell her the basics, he even talked about the genetics of his disorder. She was mesmerized. They had a beautiful, respectful conversation that educated her about his condition. I didn’t need to say anything.

Parents raising children with hemophilia become fierce advocates from the moment of diagnosis. Their education must begin quickly, despite the pain and sorrow they often feel upon discovering their child has a rare disorder. Learning everything possible about the condition is what helps a family to cope with and manage it.

I’m reminded by Caeleb’s recent interaction that children hear everything. Even when they are little, kids absorb the world around them. It’s easy to think that they’re too little to understand, when in fact, children with chronic illnesses learn quickly about their bodies.

I’m so proud of the young man my son is becoming. From beginning the school year with a great attitude to finding ways to cope with his chronic pain, he is thriving.

I caught a glimpse of the advocate in my son. Sometimes the best lessons we teach our children are the ones they reap from our example.


Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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