As a Caregiver, I’m Learning to Turn Pity Parties Into Moments of Joy

Watching his sons struggle can send columnist Joe MacDonald down a dark path

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by Joe MacDonald |

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I discovered that I have a talent unlike any other. I’m a world champion at throwing pity parties.

When times get tough and I feel lost, all I must do is put a cone-shaped hat on my head and recognize my misfortune. My glum permeates the air as I raise my fist, protesting the many misfortunes hemophilia seems to create in my family’s life. Sometimes, in my mind, I bake a cake, light candles, and provide sparklers to add to the acknowledgment of hopelessness.

The idea of “celebration” really masks deeper issues of fear, helplessness, and sadness. A feeling of inadequacy haunts me and tells me that I am lesser than the many men who provide care and support to their loved ones.

At the center of my party is a sense of dread that things might never be what they once were. Sometimes I cannot look beyond a joint bleed or other issues related to my sons’ bleeding disorders. Their pain holds me hostage as I admit defeat and realize that my efforts to relieve them have failed. So I continue down a dark path filled with anger and hopelessness.

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I’m Always Ready to Advocate for My Son With Hemophilia

My party doesn’t involve celebrating, but rather enduring horrible events. I wear my hat to admit that fear is an unwelcome guest. I recount the many times I held my boys’ hands, hoping that the pain would pass and life might return to normal. As I hear my guys holler in pain, I cannot help but take in their cries. I’m their dad, and I should have the power to stop all the ugly feelings, but I’m powerless. I can only sit with them and be a calming presence until the storm of an internal bleed passes and the company of horrible discomfort leaves.

As I remember the horrible times that threatened to overwhelm me, I cannot help but recall the seeds of hope that restored my sanity. During the worst of my youngest son’s bleeding episodes, I thought that he’d never know life without debilitating pain and would continually struggle for the rest of his life.

As I held his hand, something came over me that compelled me to surrender my struggles and realize that my youngest, Caeleb, needed my help. I ran to a toy store and purchased an extensive Lego set. Together, he and I built an incredible scene, straight out of a comic book movie.

Although Caeleb continued to struggle with pain, the distraction of the Lego set offered relief for a few minutes. After that, my focus moved from my frustration to helping my son through a challenging time. I soon realized that the more I invested in his needs, the less I felt burdened by a cloud of despair. In my hopeless state, something within me found light in the darkest times.

Sometimes I forget my purpose as the complications of a bleeding disorder overwhelm me and threaten to take my joy. Through redirecting my attention to my son Caeleb, I find healing for my soul as I help him discover hope.

A great way to heal oneself is to share with others and invest in their struggles. Set aside the things that steal our joy, and turn our attention to those we love. Through continued acts of giving, we can discover the richness of life as we continue to support our greatest treasures, our loved ones.

I take off my imaginary pity party hat and return to reality. I realize it is normal for a caregiver like me to grow weary and unsure of the journey ahead. However, the one thing I know for sure is that no matter what happens, I’ll always be the lead advocate for my sons. No matter how sorry I feel, my boys’ welfare is my highest priority. My commitment to them supersedes the sadness I endure.

Together, we march forward, searching for hope at every turn.

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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