As Parents of Children with Invisible Illness, We Must Always Remain Vigilant

As Parents of Children with Invisible Illness, We Must Always Remain Vigilant

My 13-year-old son, Caeleb, is a victim of bullying. This school year had a better start than the previous one until a couple of boys decided to pick on my mighty warrior. Name-calling and lies are hurtful, but at least words don’t leave marks on our bodies. But when others don’t keep their hands and feet to themselves, physical injuries can happen.

Caeleb was struck by another student. As I sat with him in the principal’s office after school, I recognized the seriousness of the incident. I had been living in a cocoon; some might even say that I’ve had my head buried in the sand. But recent years have been filled with good news about my son’s treatment for his hemophilia and inhibitor. I can almost forget about hemophilia apart from my son’s biweekly self-infusions. Now, I realize that complacency can be a dangerous thing.

As I thought about the incident, I began to consider the “what ifs.” What if these boys get into serious trouble and decide to take their revenge on my son? I’ve gone to the places that can frighten a parent. But I also realized that I was becoming overly anxious, and it took me a while to understand why.

My oldest son was assaulted in high school and as a result needed extra infusions. We decided that our community was unsafe, and we moved to another city. Now I am scared that the same thing will happen to his younger brother.

No one has the right to touch you, regardless of your age or place in the world. If you have a severe bleeding disorder, no one should even consider striking you. I realize that it might be an odd thing to say, but having an invisible illness can be problematic at times. Unless my sons share their diagnoses with school friends, many of them are unaware of their bleeding disorders. I considered whether knowledge of their medical condition would have prevented those bullies from targeting my boys. But I thought that was unlikely.

My younger son is old enough to understand the complexity of his hemophilia and inhibitor. I wish that I could be sure that he will always tell me of any problems that could affect his physical and mental health. His dad and I help him to navigate the ugly aspects of life. We also want him to recognize the beauty that’s all around us.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.

Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (13) in Farwell, Texas. Her book, “Dear Hemophilia” will be coming out in October 2019. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.
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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (13) in Farwell, Texas. Her book, “Dear Hemophilia” will be coming out in October 2019. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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