The weight I carried during difficult years helped me grow stronger

As a hospice chaplain, I visit patients in homes and long-term care facilities. There is one facility I particularly enjoy visiting because I have a special relationship with the director of nursing. A couple years ago, I was speaking to a nurse about one of my patients when I noticed out of the corner of my eye a woman staring at me. When I looked up, I immediately recognized her. Before I could say anything, she said, “You’re Caeleb’s mom.”

The last time I had seen this woman — a nurse — was in 2013. Back then, my youngest son, Caeleb, was just 8 years old, and seemed to spend more time in the hospital than at home. His battle with severe hemophilia and an inhibitor was taking its toll. His damaged right knee and ankle often led to hospital stays as the pain became too much to bear at home. Through it all, his resilience inspired us.

Caeleb spent much time at the University of New Mexico Children’s Hospital between 2007 and 2014. Some admissions lasted a few days, while others lasted several weeks. During his second-grade year of school, he spent practically every holiday and family celebration in the hospital, causing it to become like a second home.

Recommended Reading

May 17, 2023 Columns by Cazandra Campos-MacDonald

How my experience as a hemophilia parent has led to a new career path

This nurse and I embraced and exchanged greetings. It felt like meeting up with an old friend. I gave her an update on Caeleb, and we shared about our lives before revisiting some difficult times with Caeleb in the hospital. I felt transported back to those long, exhausting days.

Since our reconnection, she often says, “Cazandra, you look great.” I am uncomfortable with compliments and wonder why she goes out of her way to offer these beautiful words.

Shedding weight in more ways than one

During the years Caeleb was in the hospital, hemophilia was the center of my home. Life — for me, my husband, Joe, and our oldest son, Julian — was dictated by Caeleb’s condition. Joe and I did everything possible to focus on our jobs and ensure that Julian had as few interruptions to his school schedule as possible. Self-care wasn’t a consideration; we were in survival mode.

During the height of Caeleb’s medical issues, I ate. I looked forward to my midnight runs downstairs to the 24-hour deli, where the cooler never failed to have large portions of tiramisu. Cookies, pudding, and snacks were my steady companions, washed down with Diet Coke — because, of course, I had to save calories. I’ve struggled with my weight my entire life, but the weight of Caeleb’s illness was tremendous, and my coping mechanism took a toll on my health.

As time passed and Caeleb’s condition improved, our family life became more normal. The toll on my health could not be ignored, and I was forced to make significant life changes, prioritizing my well-being.

I lost 70 pounds, but more importantly, I shed the burden of a life dictated by crisis. My health and outlook were brighter than ever, a testament to the power of resilience and the potential for transformation.

My nurse friend remembered me as a mom whose focus was her son, not herself, and who carried a heavy weight of body and soul. Seeing her reconnected me with a significant piece of my past. Her compliments remind me that while I am in a better place with health and family, I must never forget the difficult years that shaped me.

I refuse to return to the woman who was weighed down by fear and exhaustion. I take those memories of who I was and bring them with me as I become who I am meant to be: a woman who has found her way in the world, whose rich past has led her to a present filled with wisdom, resilience, and purpose.

I’m no longer burdened by the past, but shaped by it. It fuels my journey forward. I embrace each challenge as a step toward becoming a woman who walks confidently, guided by faith, love, and the unwavering knowledge that she’s exactly where she’s supposed to be.

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.