By Felix Garcia
Although I’m not an athlete, I always get a kick out of professional and college athletes who turn to the camera and say, “Hi Mom!” Often though, it’s most likely their dad who taught them the sport, pushed them to exceed, and helped them make decisions leading to that position. Yet, they all say, “Hi Mom!”
It’s funny to me! Let’s be honest, it’s such tradition now that if you didn’t, even your dad would probably scold you, “What’s the matter with you, son? Why didn’t you give a shout-out to your mom?”
In the world of bleeding disorders, it’s not much different except for my generation and many before me, it was all because of mom.
Mom taught us how to play the bleeding disorder game - she pushed us to infuse and coached us to not challenge our body beyond what it could do. And yes, she is probably the reason most of us are still here today. I speak from experience – well, at least from my own experience I should say!
I was one of the lucky few that grew up in the ’70s and ’80s with a dad who made sure I infused. He was great at it. He guided me and got me to infuse when I had to. Back then it was when I had an active bleed, prophylactic treatment was a dream and joint damage the reality.
Growing up, we didn’t have local bleeding disorders meetings - in person or on Zoom. Hold on to your hats, kids… We didn’t even have the Internet (please insert “shocked” emoji here)! This means I didn’t have much to compare to until I was an adult and attended my first MANN meeting. For those of you too young to remember, MANN stood for Men’s Advocacy Network of NHF, a group founded in 1991 to bring together men with hemophilia and HIV/AIDS to advocate and provide support on a national level.
During these meetings, we shared childhood stories and myths and reminisced and joked about them. Though many of us had never talked before, we found we had many of the same superstitions. One that stood out was about not touching another needle beside the one you’re going to use. If you did, you were destined to blow a vein and would then need the extra needle you touched. A room full of grown men and most of us were still afraid to touch another needle package. Sheesh!
Speaking with these other men, I also heard about the loving, devoted mothers in our community. I’d say more than 90% of the men raved about their moms. In the middle of the conversation, I decided to speak up and say how great my dad was. Wrong crowd. Few blood brothers held their dad in such high esteem as I did my father. Very few fathers had done the things my father did. Don’t get me wrong, my mother did all those wonderful, self-sacrificing, noble acts that the others did too. She unselfishly dedicated her life to raising a child with a chronic illness.
My mom endured when told her 3-month-old son had severe hemophilia and would not live past the age of 18. She survived his two major head bleeds that almost took his life, first when he was 18 months old and then again in his early 20s. She suffered greatly when told her 11-year-old son was going to die of an AIDS-related illness because of the clotting factor they trustingly used. Yeah, my mom was just as big a rock star as any of those other mothers - she had her heart broken over and over because of me.
Well, so did my dad. He held my mom when no one else was around. He cried with her when the pain was too much to bear, and he was her pillar of strength when that was what she needed. He chose never to give up no matter how many times his heart was shattered again and again with news that his son was going to die.
More importantly to me despite the pain, my dad still taught me how to be a man. He taught me that no matter how much he hated the sight of blood and needles, I could always count on him to infuse me or hold me in the ER. He taught me whenever I had to be in the hospital after surgery, I still had to do my school assignments and read. He would show up with my homework and books.
He was always the one I wanted to impress with my recovery. My dad was always there for me. When I had to have surgery as an adult, my dad taught me that he would still always be there for me, taking my kids to school and helping my family around the house. And he is still the one I want to impress with my recovery.
I was lucky. Both my parents helped me become an adult who could manage his bleeding disorder. They both helped me become a better person. In my life, I was blessed with others who also mentored and helped me along the way. However, if having a bleeding disorder was a professional sport and the camera was on me for a brief moment, to my dad and to all the dads that help make men of their boys with hemophilia, I would say, “Hi Dad. Thank you. I love you.”
This is dedicated to all the parents who raised a child with a chronic illness and who underwent heartache and tears to get their children to where they are today. We don’t always know when or how to say thank you and you may never know how deeply the appreciation extends, but words will never cover the moments you gave us, the life you preserved in us, and all the things we now as adults have come to realize.
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