Communication with Your Child About Hemophilia—Tips for Parents
Joe Caronna, President/CEO, Inalex Communications
Tips for Parents: The Importance of Communication
As a parent of a child with hemophilia, an advocate, and past president of the Hemophilia Association of New Jersey, I've had the opportunity to meet families in the bleeding disorders community, some of whom struggle with family communication issues.
As we all know, hemophilia can be extremely overwhelming. We have all become extremely aware of the obstacles and challenges we face when managing the issues surrounding hemophilia.
Parents of children with hemophilia tend to carry intense feelings. We often get wrapped up in our child's struggles and pain. When my son was born with severe hemophilia, my wife and I were too frightened to go to support groups. We initially believed that we couldn't handle hearing about others' problems when we were struggling to cope with our own. We kept our feelings to ourselves and issues remained unresolved, which caused additional stress and anxiety.
As I got more involved within the hemophilia community, I began meeting parents and families throughout the country. I quickly realized that effective education, coupled with clear communication, was the key to overcoming some of the fear and anxiety my wife and I were experiencing.
After participating on numerous national and local boards and committees for several years, I decided to help resolve some of these issues by developing a series of programs that focus on all family members affected by hemophilia. We offer a variety of workshops, facilitated by subject matter experts, not just for parents of children with hemophilia, but for all adults, as well as teens, living with hemophilia. These workshops provide education, insight, practical tools, and strategies for connecting, bonding, and getting support from friends, family, and the community.
As I've continued to gain my own personal experience in hemophilia throughout the years, I've come to realize that one of the most powerful tools we have in the community comes from the experience and wisdom we all possess. With this shared wisdom and practical advice, we can help strengthen others as they grow, but communication is key.
In your own family, you can maintain open communication by setting aside a few minutes each day to all get together and actually talk (i.e., around the dinner table with the TV and all devices off). For example, in the Caronna home, we have a game we've been playing during dinner each evening, for as long as I can remember, called "High/Low." Each of us (Alex, 13; Christina, 12; my wife, Cathy; and I) takes a turn sharing a high and a low moment from our day. This allows us to recognize and share the good times with each other but also gives us an opportunity to talk about things that may have affected us negatively that day.
Your treatment center is another great resource where you can connect with social workers to help you work through communication issues in your own family.
Of course, there are no magic answers and no absolutes. But I've found that the families that are coping the best with the issues surrounding hemophilia all have a few key things in common:
- Lots of knowledge about hemophilia
- A general sense of hope and optimism centered on the belief that they can deal with this reality without being consumed by it
- An interest in supporting and helping other affected families
Above all, we need to remind ourselves that we are all the authors of our own destiny. We, as community members, are usually the most effective advocates in advancing therapies, programs, and legislation. Ultimately, we're the best support for one another, and together, we'll find the hope, information, and inspiration we seek.
In 2002, Joe Caronna created Inalex Communications, a nonprofit company that provides education and support for all family members in the bleeding disorders community. Since then, Inalex Communications has offered exciting no-cost programs to over two thousand participants in the bleeding disorders community throughout the United States and Canada. Shire supports 15 full-day workshops and retreats across the country each year, with programs specifically tailored for fathers/sons, adult men, and couples. To learn more about Inalex Communications and available workshops, visit inalex.com. To request your copy of Inalex Productions' "A Bright Future" DVD series featuring topics such as Newly Diagnosed Families, Extended Family, and Teaching the Educators, contact your Shire representative.