When I protected my child against unwanted media attention

For the past few weeks, I’ve written about my youngest son’s hospitalization in Houston when he was 11 months old. In one of those columns, I shared about Caeleb’s complications from a bleeding episode because of his circumcision. Caeleb spent several weeks in the hospital and eventually had a port-a-cath implanted in his upper left chest to better treat his hemophilia. Before the surgery, my son was venous-accessed so he could get the necessary medication for clotting. In addition, his lower arm was often attached with tape to a board that helped his hand stay still, thus helping keep the needle in his vein.

Many nights we visited all the Christmas decorations in the hospital’s open space for activities. I felt sorry for my son, who had to navigate with a board on his arm. He wasn’t able to crawl then, either. I often held his hand as I helped him walk around the area; at other times, I wheeled him around in a little red wagon. The glow of the lights added to the beauty of the room.

One night, I heard that a famous group planned to come to the open area to take pictures and talk with families. Members of the news media followed the group as they wanted to catch the people spreading goodwill and charity to all the children. Thus, everyone who decided to enter the area stood a chance of being confronted by the media. In many ways, the beautiful and inviting space now carried a warning that read, “Come at your own risk.”

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As Caeleb and I made our way to the area, I realized that something seemed highly unusual. Noise greeted my ears before I stepped into the site to see what was happening. I immediately saw the media circus, grabbed my son, and took him to his room. I felt angry and couldn’t believe that our sacred space appeared desecrated and taken over by an outside force. I tried to gather my thoughts and comprehend the scene I’d just witnessed.

I understand that famous groups hope to spread good cheer during the holidays, and because of their fame, the media might follow. My concern sprang up out of respect for my son. He wasn’t in the best of health and couldn’t make a choice to show his face on his own, beyond the fact that he was so young. Someone had to be his advocate, and I was that person. I chose to protect him until he could speak for himself. We stayed in Caeleb’s room until everyone left the area.

I realized something about myself that evening in the Houston hospital. I am fiercely protective of my son and feel that one day he will share the many stories I cannot regarding his struggles with hemophilia. I’m not qualified to talk from his perspective because I can’t walk a mile in his shoes. He’s the one living with hemophilia, and therefore, he should tell his story. I share my experiences regarding my child and hemophilia, but it’s up to him to share struggles I cannot imagine.

For almost five years, I’ve written my reactions and feelings concerning hemophilia and how it affects my family. But I walk a fine line when sharing my son’s perspective. First, he must share his own experiences and the lessons he’s learned. Second, he’s the only one who can grant permission to share parts of his life as we live in the chaos of a bleeding disorder. Third, my sharing must reflect my own discoveries and my caregiver’s struggles.

I encourage everyone to respect boundaries regarding the youngest members of our community. Remember that they cannot express themselves and deserve anonymity until they decide to respond to well-meaning offers. Perhaps groups who wish to offer some goodwill may do so in predestined locations, away from particular gathering areas. Respect for boundaries must be the day’s rule so everyone may feel heard and loved.

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.