Every family speaks their own language. Mine certainly does. It is like a secret code that is unbreakable outside of our house, used to inform family members how we feel about an issue or event. It is done so subtly that no one else is aware of the information — they might think we are speaking nonsense. We merely inform and move forward, never letting anyone in on the translation. What’s said in the family, stays in the family.
When my sons were very young, code for infusing started with either my wife or me making the statement, “Come on, son. It is time to go vein shopping.” While we laughed, my boys understood what we meant. It was time to infuse. We even sang little songs to help keep the mood light. We would struggle until the needle found the vein. After everything was over, we clapped and sang at the top of our lungs.
On the surface, the code appears shallow and doesn’t seem to play an essential role in our lives. Upon further inspection, we discover that speaking a language unfamiliar to anyone else helps keep us bonded. It is a constant reminder that we connect in a way that is special and unique. We belong to this group, our “peeps.”
Through the chaos of managing a chronic illness, identities can get lost in the process of treatments, doctor’s appointments, and hospitalizations. We need something to remind us that we belong to our tribe. Even in the darkest of moments, our language tells us who we are. In ways only known to our unique family, we say without any translatable words, “We’ve got this! You are loved more than you can ever imagine!”
As humans, we all need a sense of community. We must know that we are somebody to somebody. Our need for relationships overwhelms a disease or disorder that tries to isolate us out of the group. In the twinkling of an eye, we come to the rescue of each other. We grab on tight and keep instilling hope when all seems lost. We do this together because we are a family. Our commitment knows no bounds.
I think of my family’s private language. Without revealing too much, one of us can hum a tune and the rest of us know the meaning. Most of the time we will break into laughter, glad to have someone genuinely get us. There is power and unbridled joy in a secret language. So, to “MacDonald the Older,” “MacDonald the Younger,” and “Mommy the Magnificent”: “Daddy the Great” loves you with all of his heart, hemophilia and all.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.