A Not-So-Healthy Dose of Nerves

A Not-So-Healthy Dose of Nerves

My youngest son continues to celebrate good health. The last time he suffered a joint bleed was in February 2014. A million years seem to have passed since the days of horrific bleeds and endless hospital visits. We used to know every nurse by name on the pediatric unit of the hospital where both MacDonald boys received care. Life continued to improve and so we moved on. We’ve never forgotten the incredible men and women who do more than just their jobs — they create community.

I remember a strange time not too long after our “farewell tour,” when my son and I played in a park. I stood in the center of a beautiful green parkway when I caught a glimpse of my son running. My heart started pounding as I ran after him, convinced that another bleed might occur, that we would spend a long series of nights in the hospital. I caught up with him and he was safe. I refused to let my fears show that summer day. How could I express my concern that he could not play like other children?

As fast as the question came to my mind, I felt shame for not allowing my son to monitor himself. The park incident reminded me to talk with our treatment center about concern giving way to unnecessary fear. Our fantastic medical team reassured me that my response was typical of our situation. My feeling of panic was my body’s response to trauma, and all of them said together, “Yes, your family’s experiences in and out of the hospital were traumatic.”

I looked at them as if something hit me in the gut. I knew what the team said rang true, but my heart did not want to listen to my head. My family suffers from trauma. When we faced the awful repetition of unstoppable bleeds and the endless days counted from hospital rooms, little did we realize that our minds counted each episode and stored them in a mental memory chip. The file uploads when we least expect it to, and in the wake of our memories we are crushed by grief.

We find ourselves challenged to guard against overwhelming fear. We are a product of our experiences. We must face the hard memories and remind ourselves that we learn from them so that the good times appear more vibrant than the challenging times. I hug my sons with a fierceness only possible by a parent who knows what it means to live through a storm. We know that struggles give way to joy.

Mighty men and women on the pediatric unit: I raise a toast to your ferocious loyalty, you who betters every family who experiences your loving and caring presence. You are works of art — each nurse, healthcare worker, and housekeeper. Jobs can be simply jobs, but you work with a sense of calling. I hope that I care for the people in my charge with as much dedication as you exhibit every day.

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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.

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Joe is the father of two sons with hemophilia. He and his wife Cazandra are active member in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

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