Listening to each other’s symphonies in the bleeding disorders community
A columnist bids farewell, thanking readers for being in her 'audience'
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A symphony is a long musical piece with a clear structure, traditionally divided into four sections called movements. Each has its own tempo, mood, and rhythm. The pauses between them give the audience time to take in each part.
Usually, the first movement is fast and lively. Then comes a slower, more emotional piece. After that, there might be a playful dance. The last movement is often quick and exciting, ending on a high note. In many ways, a symphony is a good metaphor for raising a child with a rare, chronic disorder like hemophilia.
When I married my husband, Joe, in 1992, I felt excited about starting our life together. We built our careers, learned to live as a couple, and enjoyed many happy, lighthearted moments. When I became pregnant, our joy grew even more. That first movement of our life kept going — until our son Julian was diagnosed with hemophilia.
The pause before our next chapter felt long. The silence was filled with anxiety and fear. When life picked up again, everything felt heavier. We learned to identify a bleed, give infusions, and even deal with a short-lived inhibitor. Through it all, we found our way.
And 10 years later, when our son Caeleb came into the world and was also diagnosed with hemophilia, a new movement began.
Even with all the sorrow, fear, guilt, and anger, the music in our lives never stopped. The people listening — our audience — were just as important.
The bleeding disorders community was always there for us. They listened to all our fears and worries, and other parents shared their advice, ideas, and constant support without hesitation. This community became, and remains, the family that stood by us during our hardest times.
They watched us go through our own journey. They helped us through painful bleeds and listened when Caeleb’s inhibitor became especially difficult and heartbreaking. Between each stage, they cried with us. They shared our excitement when a new treatment brought hope. Now, Joe and I try to do the same for others in our community, supporting many families on their own journeys.
When things get tough, I try to block out distractions and focus on the person I’m with. I look them in the eyes instead of scrolling on my phone during our talks.
Instead of jumping in with my own stories, I try to listen more than I talk. I want the other person to feel truly heard.
I’ve learned something that changed how I see life. People need three things: to be seen, to be heard, and to be loved. Loving people no matter their skin color, gender, sexual orientation, or race is what God asks of me. Being there for someone — holding their hand, giving a hug, or sharing a phone number they can call anytime — is the greatest act of love we can offer.
The symphony continues
After more than nine years of writing this column, it’s time for me to find new writing adventures. Through Hemophilia News Today, I’ve met people I never would have met otherwise. Thank you from the bottom of my heart for your emails asking for support, your messages on social media, and all the kind words you’ve shared over the years.
The last movements of my symphonies have yet to begin. Knowing that you are in the audience watching, listening, encouraging, and loving my family brings me great joy.
Don’t forget that I am in your audience, too, listening to every moment of your masterpiece with goosebumps on my arms. I am with you and here for you.
Let’s keep enjoying the music together and celebrate each other with loud applause. As for my masterpieces, Julian and Caeleb, their symphonies continue.
Thank you, my dear community — my family.
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 consult your physician or another qualified healthcare 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.
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