Looking Forward to a ‘Family’ Reunion
I’m a homebody. I work from home most days, and when I’m relaxing, I’m quilting, sewing, or weaving. The gratitude I have for my home and my activities there is overwhelming in the best of ways. While the pandemic has caused many to feel trapped, unable to move about the world freely, I found solace in my surroundings.
The luxury of meeting virtually has only helped me enjoy being at home. Thanks to those opportunities, I’ve met new people, learned new skills, and kept in touch with family and friends during the pandemic. I’m grateful for this technology and how it’s helped me isolate.
Quarantining fits my introverted personality. It takes quite a lot for me to travel. However, I am thrilled about an upcoming trip.
My family and I will be attending the Hemophilia Federation of America’s 2022 Symposium in San Antonio from April 20–23. This event isn’t simply a meeting with workshops and vendors; it’s also a long-awaited family reunion.
Whenever I attend a national or local meeting, I flash back to the early days of 1996, when my firstborn son was diagnosed with severe hemophilia A. The first national meeting I attended was eye-opening, a bit frightening, and wonderful. I was in rooms with parents of children who had the same diagnosis as my son. In those rooms I realized I was not alone.
The bleeding disorder community is unique in that consumers/patients, families, medical professionals, and vendors come together for education and support. The bleeding disorder patient and family are often well versed in their care and know what they need. And when some aren’t able to speak up for themselves and advocate for their needs, someone in the community will always step in to help.
This is what family is all about. We help one another get through the difficult times and celebrate the joys. Offering a shoulder to cry on or simply listening is often what a person needs from someone who understands. When treatment is not going well and the care team is not listening, we know that phoning a friend in the community can lead to others who may be of help.
Technology and social media have only helped to strengthen the bleeding disorder community. At any time of the day or night, social media connects the community. I cannot count how many times I would sit with my laptop in the wee hours of the morning next to my son’s hospital bed in tears. Going to Facebook to find words of encouragement and support from my bleeding disorder family was my saving grace. I knew everything would work out in those moments because I was not alone.
I give great thanks for the virtual education and support throughout the pandemic. But now, I am looking forward to hugging the necks of my family. It has been too long.
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.