To help my son face hemophilia pain, I had to manage my panic
Being able to do that has helped my family learn to be resilient
The world often feels like an amusement park ride that does nothing but turn in circles, and we must gather the courage to get on.
At first, everything spins at a moderate pace, but as the ride continues, the pace picks up, and suddenly everything spins so fast we can hardly make anything out. We keep thinking, “When will this end? I don’t have the strength to keep this up.” The thrill gives way to fear.
Those of us who struggle with a chronic bleeding disorder know a lot about fear.
My 19-year-old son, Caeleb, has hemophilia, and when he was younger, he experienced breakthrough internal bleeding in his right knee and joint. The pain was unbearable; Caeleb described it as a million needles poking his skin again and again.
I remember intuitively hugging his neck, wanting so much to hold him in my arms and protect him from the misery that he felt. But I also remember feeling so overwhelmed, and my brain wanted to scream out, “Enough of this mess. Just stop hurting my son!”
Cultivating resilience
Instead, I worked to remind myself that my frustration wouldn’t help him. I knew all I could do was to stand beside him and try to be the non-anxious presence in the room — not an easy task for someone who struggles with anxiety, as I do.
But playing the comic does come naturally to me, so I was able to distract my son for a while by making him laugh. When that stopped working, we played with Legos together.
I learned that remaining calm during the worst of circumstances gave my son the space to handle the problems he faced. I would repeat the mantra, “This will get better,” and grab his hand or lie in bed beside him, always trying to be the non-anxious presence in the room.
Over time, I learned to rely on another saying to get through difficult times: “This too shall pass.” Being able to remind my family that the healing follows when the bleeding stops helped us to feel hopeful and resilient. We also learned to discuss difficult emotions, which strengthened our connection and fostered a sense of hope that we could overcome the challenges we faced.
It took time, but we discovered new ways to build strength and fortitude when we were faced with a bleeding episode. Now, as a family, we take walks, share journal entries, or contribute to a “strength jar” where we write down positive affirmations or moments of courage.
My wife and I teach Caeleb and our oldest son, Julian, who also has hemophilia A, that none of us stands alone. We draw strength from each other and from our loved ones, which helps us feel empowered and united.
Feeling anxious is a normal response to fear, but knowing that others understand our journey serves as a comfort and helps us develop resilience. Together, we are mighty. We may struggle with anxiety from time to time, but that’s OK. As long as we have each other, we can move mountains.
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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