Raising sons with hemophilia challenged my perfectionist tendencies

I struggle with something that affects me on every level — spiritually, emotionally, and physically. It’s called perfectionism.

My perfectionism started when I was a kid. I used to rearrange my room all the time, making sure everything was in its place. A tidy space made me happy. As a young oboist, I practiced for hours to prepare for the all-region orchestra and band. Perfecting my technique mattered to me, and the sound of the silver keys was satisfying. I also worked hard in school, graduating at the top of my class, and participated in many activities and clubs.

Perfectionism followed me into marriage. I kept my home spotless, with no dust on the baseboards and a sparkling kitchen. This drive for achievement pushed me in every part of my life.

Then I had a child with hemophilia.

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Impossible standards

My first son, Julian, was diagnosed with severe hemophilia A after his circumcision. I was terrified. I had done everything “right” during pregnancy, so I couldn’t understand how this could happen. But I soon realized that, no matter how carefully I followed every rule, genetics had the final say.

During the first months of Julian’s life, fear took over. I watched for any sign of a bleed, read everything I could, and talked to other moms in the bleeding disorders community. I wanted to be prepared, so I filled my mind with information and thought I knew what to expect and how to handle it.

Then I had another child with hemophilia.

Caring for my second son, Caeleb, who also has severe hemophilia A with an inhibitor, brought challenges I never expected. I thought I knew how to raise a child with the condition, but I quickly realized that Caeleb’s journey was nothing like Julian’s. I assumed I could handle Caeleb’s bleeds without any problems and didn’t need extra help, but my perfectionist mindset only made things harder. What I failed to embrace was the unpredictability of hemophilia.

After years of living this way, I had to face a hard truth: Perfectionism is exhausting. Trying to be kind, selfless, loving, and perfect at everything is not just tiring — it’s impossible. The standards I set for myself were simply too high.

Living with a bleeding disorder or any chronic illness means facing a lot of uncertainty. You can try to plan for every possible scenario, but the unexpected still happens, and things don’t always go smoothly. At times, it takes more than one try to find a vein. Sometimes you miss the signs of a bleed until your toddler’s knee is already swollen. And then, the seemingly impossible happens: You run out of needles or factor. Life just isn’t perfect.

On my journey to releasing perfectionism’s grip, I learned that vulnerability is a sign of strength, not weakness. I realized I could admit when I needed help. I talked to doctors and sometimes broke down in tears when things got too hard. I reached out to friends in the community to hear their stories, especially when treatments didn’t work for Caeleb. Sometimes, instead of trying to do everything perfectly, I just sat with my son and played.

My sons, now adults, didn’t need a perfect mother. They needed someone who would listen, learn, adapt, stand up for them, be present, and love them through every challenge. They needed a mom who could admit mistakes, ask questions, and keep going even when things were scary.

Now, when perfectionism starts to creep in, I remind myself that real strength isn’t about being faultless. It’s about being vulnerable and having the courage to keep moving forward.

I can’t claim that my perfectionist mentality is a thing of the past. The whisper of perfectionism nudges me, reminding me that I am more than anything that isn’t quite what I hoped it’d be. I continue to learn that a life filled with love, compassion, grace, and mistakes is so much better than chasing perfection.

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 consult your physician or another qualified healthcare 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.