I’m teaching my son with hemophilia to do the next right thing

How to find a path forward when life gets overwhelming

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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When my sons were little, there were always mountains of laundry. How could such a tiny human go through so many onesies? There were dozens of little socks to be matched, stains to be treated, and hundreds of pieces of clothing to be folded. It was never-ending. There were weeks when clean clothes never made it into drawers, as living out of laundry baskets seemed easier. Standing back and surveying the mounds of laundry to be washed, dried, and folded made caring for a newborn seem insurmountable.

So instead of looking at all the laundry to be done, I began to break the chore into small pieces. One load before breakfast, another after lunch, perhaps another in the evening. Before I knew it, the overwhelming mountains of clothes had become more manageable.

Being overwhelmed can quickly induce anxiety. Will I ever get this done? What if I can’t do this? I need to quit. I’m not smart enough.

I learned that if I let being overwhelmed get the best of me, I’d never accomplish anything. Self-talk is important, but too often, it gets very negative.

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Finding a path forward

My youngest son, Caeleb, is 17 years old. This school year has been highly challenging due to his pain from hemophilia complications. He recently had ankle surgery in the hope of relieving some pain. Years of repeated bleeding into this target joint caused severe damage. Caeleb’s orthopedic doctor said his MRI scans look like they’re from someone at the Veterans Affairs hospital.

I cannot begin to imagine the level of pain Caeleb endures.

The surgery was successful, and he began to heal well once the pain was managed. He finally returned to school wearing an orthotic boot, and I thought all was well.

One morning, he woke up and said his pain was intolerable. How in the world could his pain be worse? My husband and I knew it was in Caeleb’s best interest to push through and go to school. However, my heart was breaking.

In the end, I found out that while Caeleb had pain, he was more overwhelmed by everything he needed to get done for school. He’s missed weeks of school this year, and while his teachers have done a beautiful job of working with him remotely, distance learning is challenging for Caeleb.

How does a parent know when to push and when to give in?

I know Caeleb will live with a certain amount of pain for the rest of his life. It’s a fact that hurts me to the core, but it’s essential to help him keep moving forward. Pushing my son to move through the complex parts of living with hemophilia and an inhibitor is challenging. However, I’m afraid that if I give in and let him stay in his comfort zone, he won’t be successful in his future pursuits.

Pushing a child to ensure success can be a slippery slope. In my son’s case, his medical condition has been a challenge all his life. If I allow him to raise the flag of surrender too often, then hemophilia wins. But I must be careful about how hard I push.

“Do the next right thing” is what I tell Caeleb. Instead of looking at the mountains of homework that must be completed, focus on what’s due tomorrow. Teaching him how to tackle the mounds of laundry collecting at his feet is one of the hardest things I’ve encountered as a parent.

As much as it hurts to see my son in physical pain, I know the lessons I’m trying to impart will help him succeed despite hemophilia.

Then, Caeleb wins.

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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