Person-first: Supporting your child’s identity beyond hemophilia

Our family’s love for live theater is a bond we cherish. We make it a point to attend as many shows as we can in our area. I vividly recall the first time we saw the musical “Wicked” onstage. My oldest son, Julian, was 10 years old, and we were lucky enough to win tickets to the show. As the first scene unfolded, we sat in eager anticipation of the familiar songs. The moment Glinda, the good witch, descended from the ceiling in a grand bubble, hitting those high notes effortlessly, we were both in awe. It was a moment of pure joy.

As we watched and listened to the musical feast on stage, Elphaba sang a lyric that made me shudder a bit. The words were, “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. I hated to admit it, but 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?

The last thing I wanted my son to do was to define himself by the limits of hemophilia. I kept thinking about ways to help him have a healthy relationship with his bleeding disorder, but not feel restricted by it. I kept searching for ways to find healthy boundaries without feeling limited.

By finding age-appropriate ways to help my son discover his identity and how it relates to hemophilia, encouraging him to prepare for any possible issues appropriately, and adhering to a strict prophylactic treatment regimen, Julian found ways to pursue his dreams.

Below is my advice on how you can help your own child define their identity apart from hemophilia.

Use language that distinguishes your child from their bleeding disorder

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.” Such language inferred that my boy defined himself by his bleeding disorder. This unfortunate description is not true. 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 other many different facets of himself. Julian felt empowered to define himself rather than give in to allowing anything to reduce him to his bleeding disorder.

Distinguishing my son from hemophilia enabled him to discover his unlimited potential. He felt free to follow his dreams.

Give your child ownership in balancing desires with care needs

As a child, my son Julian wanted to play soccer and participate in other activities that posed a certain amount of risk. We helped him to think through the safe way to do these things:

• When he was a child, 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, Julian provided the 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.

Manage your anxieties when a child chooses to handle things differently

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. This instruction suited him well as he became an adult and left the house during college. He knew when he needed extra factor doses and continued to treat his condition prophylactically.

One day, Julian called home. I could tell by the tone of his voice that something was not right. 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 will admit that 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.

• He suggested calling the Hemophilia Treatment Center and explaining the situation.
• He apologized for not following his treatment protocol.

My part was to refrain from saying, “I told you so,” and instead reinforced his decision to call his nurse and the appropriate way to handle things when he made a mistake.

Julian is an adult and continues to embrace the idea 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.