No One Is Perfect When Treating a Chronic Illness

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by Joe MacDonald |

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Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention.

Too often, I fixate on how one decision affected life choices, often leading to more extended hospitalizations or infusions to overcome bleeds. I remember the pain I caused my family and am overwhelmed with heartache.

I reinforce my self-deprecating talk with sentences like, “You knew that his bleeds never got better without going to the hospital. Why did you wait so long to take him? You delayed taking your boy into the emergency room because of the time of night. Because of your actions, your boy required more medical care.”

I continue to beat myself up without allowing one ounce of grace to enter my thoughts. I often fail to realize and accept that I do the best job I can with the information I have during a health crisis.

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Yes, sometimes I’ve delayed rushing to the emergency room because I wanted to keep my boys’ schedules as normal as possible. I did everything in my power to keep them in school so they could spend time with friends and not get behind on homework.

I’ve never made a decision that I knew would have harmful consequences for my boys. I’ve always had their best interests at heart.

I define grace as the unmerited favor of goodness available to all. There is no judgment attached, simply a willingness to admit mistakes and embrace the sacred that lies within each of us. My understanding does not necessarily include a religious connotation but merely a desire to move past the confines of self-condemnation into the reality that we are not perfect. Our self-esteem does not depend on our feelings of worthiness, nor does it require a court of personal opinion to remind us of our worthlessness.

In other words, while parents attempt to make the best decisions for our children, we make mistakes. In our humanness, we live with the reality that we are not error-free. It is just the nature of the beast. We do not need to judge ourselves as hopelessly inept because we made a mistake or two. We move forward, having learned to make different choices on our journey.

I often tell people that my mind is a dangerous neighborhood, and I never go in by myself. This reminder helps keep me grounded as I struggle to maintain balance in my life. I remember to let the negative feelings go and embrace a sense of hope and forgiveness as I continue to journey along the road of chronic illness with my stinky boys. Yielding to the reality that no one is perfect helps me face life grace-filled and learn from my mistakes.

There was a time in my oldest son’s life when he struggled with a fear of needles. He moved and proved restless when preparing to infuse. These events seemed like nightmares, as my anger grew with each twist and turn of his body. I could not control the rage I felt within, but I never shouted unkind words at my boy. Still, he knew that I had a wall of anger, seething and ready to strike.

After infusing, I beat myself up badly, always apologizing for how I felt. I later realized that what I felt was a sense of panic that I would be unable to infuse my stinky son, and as a result, he might face a trip to the emergency room.

Years later, my son and I talked about his struggles with infusing. I apologized to him and told him that I regretted getting so angry about something he couldn’t control. He looked at me and said, “Dad, I never thought you were angry. I just knew you felt stressed because you needed to infuse me.” I gave thanks for his wisdom as he reminded me again that the nature of grace continues to be an essential presence in my family’s life.

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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, and are intended to spark discussion about issues pertaining to hemophilia.

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