Grateful for community support after reuniting with old friends

Last weekend was a testament to the importance of community support for those who struggle with bleeding disorders.

As the vice president of Sangre de Oro, the New Mexico chapter of the National Bleeding Disorders Foundation (NBDF), I’ve witnessed the challenges our organization has faced over the years. The board of directors’ goal is to move past the complications and lean into a future where we provide more educational opportunities, a summer camp for our younger members, and ways to develop connections with blood brothers and sisters. Our community’s invaluable support and contributions make this future possible.

Our chapter’s family weekend, held March 21-23 in Albuquerque, demonstrated our unity. We provided child care, a track for teenagers, and education for parents about their children’s needs. Caregivers had numerous chances to meet other families, and many attended workshops designed to provide insight into the struggles of managing care for a family member with a bleeding disorder.

Attendees made new friends and got reacquainted with old ones, which fostered a sense of community and shared understanding.

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My wife, Cazandra, and I had another opportunity to offer caregivers and other adults a session of our own, “Finding Our Way Back to Each Other,” which we first presented at the NBDF’s annual conference last fall in Atlanta. We talked about the challenges we faced when our youngest son, Caeleb, was struggling with internal target joint bleeding into his right knee and ankle — a complication of hemophilia. Cazandra and I discussed the disconnect we experienced while managing day-to-day life and caring for Caeleb.

As we made our way through our presentation, I felt like I was reliving some of our most challenging moments. Several times I turned to Cazandra with tears in my eyes as I shared how I processed the difficult times by stepping back and withdrawing. I struggled to manage my emotions; I thought that if I started crying, I wouldn’t be able to stop.

I shared with other chapter members that I felt like I’d built a 40-foot-high wall around my heart. Not only was my wall tall, but it was thick. My fortress was impenetrable. A whole battalion of emotions wouldn’t have been able to crash through the thick layers of denial I’d crafted to protect my heart.

I further explained to the group that I had to do much work on my soul to reconnect with my wife. Working with an incredible therapist helped me knock down the fortress surrounding my heart. As we focused on the fear I carried regarding my son, I felt the wall begin to crumble. Recovery didn’t happen all at once, but over many years. My therapist and I slowly removed one brick at a time until I discovered the many feelings I’d held at bay.

I hope my personal growth can inspire hope and resilience in others facing similar challenges.

As I said so long to that prison in my chest, I noticed a more robust connection develop with my family. Slowly, we rediscovered one another by sharing about our lives. Cazandra and I reestablished our strong relationship, which has now grown into something I could’ve never imagined. I grew closer to Caeleb and Julian, my oldest son, as we found new ways to enjoy each other’s company.

Cazandra and I received nothing but positive feedback when we finished our presentation. Many of our longtime friends appreciated our honesty about how we coped and thrived through tough times. We smiled and thanked everyone for attending our workshop. We prayed our story would give others hope.

After taking a few moments for ourselves, we rejoined our friends and continued sharing stories that connected us. As a community, we depend on each other to journey through the good, the bad, and the ugly of bleeding disorders. Our strength is invincible as we face the world together.

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.