In 2013, Caeleb, who was in second grade, missed about 70 days of school due to recurring bleeding in his right knee and ankle. It took an entire year for him to extend his knee completely, and he lost mobility and had to rely on a wheelchair and a walker.
That period was devastating for my son. Not only did he endure physical pain, but also the emotional pain he suffered from missing friends and being unable to do the normal things that kids do in school took a big toll on him.
That year also was stressful for the rest of my family. My husband and I adjusted our work schedules to be with Caeleb in the hospital. Making sure our older son, Julian, had transportation to school was not easy. Julian, who didn’t drive at the time, attended classes at two different high school campuses.
We often relied on friends from church to help us when Caeleb was admitted to the hospital. Our normal routines were interrupted, along with the manner in which our family interacted with one another.
One of the hard parts of having a child who is constantly in a cycle of chaos due to a bleeding disorder is when people ask how everything is going. As the pastor’s family at church, we repeated the same information ad nauseam. When a person does not have a basic understanding of hemophilia, their well-intentioned concern often evolves into pity. People mean well, but sometimes I simply did not want to answer questions.
One day, someone pleasantly surprised me. As they approached in the church fellowship hall, I put on my invisible armor to protect me from whatever I needed to divulge. The gentleman asked me, “How is Julian?” I graciously reminded him that Caeleb was in the hospital, not Julian. He nodded and said he knew. He was concerned about Julian because he knew Caeleb was the sibling that needed the lion’s share of attention.
I was dumbfounded — someone had asked about Julian. Someone cared about my older son because they knew that circumstances had relegated him to “second place.” I teared up as I walked away from this sweet man.
Before that moment, my battle armor had helped me prepare for daily battle with hemophilia. It helped me prepare to speak with those caring for my son and advocating for the best treatment. I never had time to take off this heavy armor because I needed to be ready to fight for my son and help him through his pain the best I could.
But that moment of compassion for Julian stripped my armor away, and I soaked in the kindness and compassion. It took my breath away and offered me a moment to accept the love given to my family and me.
Nothing means more to a parent than when love and concern are expressed for the children.
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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