Struggling with parental guilt as I wonder if I did enough for my son

With my youngest son, Caeleb, graduating from high school this Saturday, I can’t help but ask, “Did I do enough for him?”

While celebrating the end of one era, there’s always something ahead that grabs our attention. Sometimes, what we face is positive and propels us on to our new chapter; other times, we crash to the ground, wondering if we’ll ever get up.

My boy has struggled throughout his young life with complications related to hemophilia. He suffered multiple operations due to faulty port-a-caths, endured ferocious pain during the continuous onslaught of breakthrough bleeding episodes, and sat in hospital rooms screaming in pain for at least three of his elementary school years. Caeleb currently lives with chronic pain because his right ankle and knee are damaged from internal bleeding in those target joints.

I know my mighty warrior can stand firm and conquer anything that comes his way. Still, as a parent, I worry I didn’t do enough to support him during those difficult times.

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Upon reflection, I realized I could’ve been kinder and less anxious. As I silently punished myself and hurled unkind words against my soul, I hoped that any part of me that might’ve failed Caeleb would be cast against the rocks and swept away by the waters beneath me. I want to replace the anger I’ve displayed in the past with compassion and be a calm presence.

Another question came to mind as I chastised myself: “Have you forgiven yourself for your past wrongs and tried to reconnect to the spirit that lies within?” I realized that to break free of my guilt, I must do the work of reconciliation for myself.

Moments of strength

Perhaps the best question I asked myself was a more positive affirmation: “When did I do the best job as a caregiver to my son?”

I thought of the many times we created Lego figurines and different scenes while Caeleb faced horrible pain due to an uncooperative ankle or knee. My greatest moments of strength occurred during the silence of meditation, as I tried to be a calm, still presence in the room.

Caeleb often struggled with the pain he felt in his knee and ankle. He screamed because the throbbing sensation proved too tricky to handle. I lay in bed with him and spoke softly into his ear. I once said a simple word: “Breathe.”

As he cried one day, I sang a song I knew, “For Baby (For Bobbie),” written by John Denver and performed by Peter, Paul and Mary: “I’ll walk in the rain by your side/ I’ll cling to the warmth of your tiny hand/ I’ll do anything to help you understand/ I’ll love you more than anybody can.”

I sang softly to remind him that I love him with all my heart. Soon, the tears ceased, the medicine took effect, and he looked at me with big, beautiful hazel eyes as if to say, “Come on, Dad, let’s keep building Legos.”

Many years will come and go, and I’ll keep asking myself the same questions about how I might’ve failed as a parent. I’m confident that the phrase “Did I do enough for him?” will continue to invade my brain, and my mindset will always lean negative. I will evaluate each event, look for my faults, and think, “Yuck!”

Hopefully, memories of what I did right will outweigh my shortcomings. After evaluating my son’s childhood, I pray that grace enters my heart, and I thank my creator for giving me this amazing son. I smile and look up at the heavens, knowing the divine source of all things gifted me with this fantastic young man.

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.