The bleeding disorders community reminds us we are not alone

My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me differently.

I remember feeling helpless, not knowing anyone who had the slightest idea how to manage a bleeding disorder. For the first few years, Cazandra and I walked around as if we were zombies. I kept wondering how our world would change because of the diagnosis.

As we moved through those early years, we discovered a community of people affected by bleeding disorders. Many of them had formed bonds that reached beyond blood relatives, pardon the pun. The Parent Empowerment Program became essential as we learned to care and advocate for our sons. We quickly realized that these connections touched every part of our lives.

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We are not alone on our journey

That sense of connection began with a simple phone call. When Cazandra and I first visited the Gulf States Hemophilia and Thrombophilia Center in Houston, a social worker asked if she could share our name and number with a member of the Lone Star Bleeding Disorders Foundation. We said yes, not realizing how much that decision would change our lives.

Less than a week after our visit, the phone rang. Lisa Grasshoff, a hemophilia parent and advocate, spoke with Cazandra for a long time, assuring her that she was not alone and that there were many ways to connect with the bleeding disorders community. By the end of the call, we had been invited to a Lone Star event.

After she hung up, Cazandra stared at me in disbelief and said, “My gosh, I feel like I’ve just been welcomed into a new part of our family.”

In that moment, we realized we were not alone. The silver lining of the traumatic diagnosis was the gift of our newfound community. Our lives were richly blessed by amazing people and helpful resources. We had our new blood brothers and sisters to support us.

Our family grew stronger as we managed healthcare challenges

With our new blood brothers and sisters supporting us, our family was able to grow stronger, despite serious medical challenges. We faced some difficult seasons as our children grew up, with Caeleb, our youngest, experiencing nearly every complication that hemophilia can bring. Through every difficulty, our family remained constant. We helped one another and found ways to enjoy each other’s company.

During those hard seasons, members of our bleeding disorders community often visited us in the hospital. They sat with Caeleb while Cazandra and I went to a nice restaurant and spent time together. We remain forever grateful for those connections because they gave us opportunities to stay close to one another.

Through each struggle, we found the strength to keep moving forward and were reminded of what matters most in life. The love we share continues to shape and mold us.

Having received support, we must share it with others

After receiving so much help, we feel called to pay it forward and help others. Since Julian, our oldest, was diagnosed more than 30 years ago, we have called parents of newly diagnosed children, spoken at local and national gatherings, and supported families struggling to make sense of their new normal. Often, I hear in them the same fear Cazandra and I once carried. We assure our newest family members that there is hope and that they will not walk this journey alone.

In that same spirit, we encourage other community members to share their stories, because those stories matter. Our experiences become a storehouse of knowledge for those who need a gentle landing. We share our journey, spread hope wherever we can, and pass along good news. No one has to travel through life alone. We find resilience in facing hemophilia 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 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.