My oldest son, Julian, was 10 years old when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited./ My future is unlimited.”
My immediate thought was, “I wish my son could say that sentence.”
No matter where we went, hemophilia seemed to always lurk under the surface. Every decision he made had to be measured by the risk of damage to his joints.
How could his future be unlimited when a bleeding disorder threatened to rob him of what he wanted to do in life? But the last thing I wanted for my son to do was to define himself by the limits of hemophilia.
I thought about ways to help him have a healthy relationship with his bleeding disorder, but not feel restricted by it. I searched for ways to find healthy boundaries without feeling limited.
Below is my advice on how you can help your child define themselves separate from hemophilia.
Use language that conveys your child is more than their diagnosis
One of the most essential strategies in my household was to help define our son’s relationship with hemophilia from the very beginning through careful language. We did not refer to Julian as a “hemophiliac,” which would imply that my boy defined himself by his bleeding disorder.
Many things make up my incredible son. While his bleeding disorder is a significant part of his life, he is not hemophilia.
Referring to my son as “someone who has hemophilia” allowed him to color in the many other different facets of himself. It enabled him to discover his unlimited potential. He felt free to follow his dreams.
Help them learn to balance care needs while doing what they love
As a child, Julian wanted to play soccer and participate in other activities that posed a certain amount of risk. We helped him think through the safe way to do these things.
We talked with him about the precautions he needed to take to participate in various sports.
We asked him what he needed to do to give his blood “muscles” so he could play with his friends.
We invited him to discuss with us the importance of treating in advance.
As he grew up, the conversation had more nuance, but we continued to reinforce his decisions regarding his health. It proved crucial he was in the driver’s seat regarding his medical condition. Continuous reinforcement empowered him to take ownership of his bleeding disorder.
At every step, from childhood to adulthood, we provided Julian guidance on how to take care of his hemophilia. My wife and I continued to offer suggestions, but ultimately, my son made his own decisions regarding his healthcare.
Let go and allow your child to take control
Pausing to breathe is an essential part of how I manage my fears.
As Julian grew older, I tried to allow him complete control of his bleeding disorder. When he was a teenager, my son ordered his product and kept up with infusion days.
When he was in college, he knew when he needed extra factor doses and continued to treat his condition prophylactically.
One day, though, Julian called home. After some prodding, he admitted that he had not infused in a while and felt like he had a muscle bleed in his right hip. He did not know what to do.
I wanted to fire back with several reprimands that would not have helped the situation. Instead, I took a deep breath and asked my son what he thought he should do.
My part was to refrain from saying, “I told you so.” Instead, I reinforced his decision to call his nurse.
Trust your child’s growing independence
Julian is an adult and continues to embrace the idea that his diagnosis does not define him. He sometimes makes mistakes, but it is OK. I pause, breathe, and listen as a concerned father and caregiver.
In moments of frustration, I remind myself to step back and remember he is in control of the situation. I smile because I look at him and all I can think is that his future is unlimited.
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.
