After the challenges of hemophilia, a well-deserved ‘sacred silence’
With puzzles and sewing, we empty nesters enter a new chapter
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I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges early on, but we made it through. Building a life together at a young age isn’t easy, but it’s worth it. And our dream was to have a family.
Our first son, Julian, was born in 1996 and diagnosed with severe hemophilia A. We were heartbroken. We had to learn about hemophilia fast and figure out how to care for him. The three of us stuck together, learning from every bump, bruise, and bleed.
Our son Caeleb was born in 2006. Also diagnosed with severe hemophilia A, his case included a high-titer inhibitor. Joe and I soon realized Caeleb’s condition was different and more serious than Julian’s, and everything we thought we knew was challenged.
The challenges we faced
Our family of four faced each challenge as it came. The learning curve was steep. Hospitalizations, trips out of state for second opinions, and what felt like endless visits to a hemophilia treatment center became the norm. Regardless, we stayed strong as a family, but the exhaustion sometimes left us feeling disconnected.
Joe and I handle crises well. I spring into action, gathering what we need and thinking through all the possible changes, like schedules, pickups, dinner, and home life. Joe takes a step back and looks at the bigger picture and long-term plans. We got things done, but our relationship always came last. We only connected when it came to caring for our sons, not for each other.
I’m amazed at what we managed to do. Caeleb received the care he needed, and so did Julian. Our family stayed together, even with the long, painful nights of bleeds and trips to and from the hospital. Even when we weren’t all under the same roof, we leaned on each other.
Life is different now.
Julian is 30 and travels around the country as a singer and actor. Caeleb is a junior in college and lives three hours away from home. Joe and I are empty nesters. This new chapter is both exciting and different.
Joe spends hours putting together puzzles to unwind after work. He also studies French and relaxes by watching YouTube videos about traveling to Europe. I relax by quilting. I watch my favorite shows on my iPad with my AirPods while I sew pieces of fabric together. I’m also learning Spanish and enjoy my shows as my sewing machine hums along.
Sometimes I worry that Joe and I will drift apart during this season. While we spend time doing what makes us happy, it is often in our own space and silence. He reminds me that we deserve to do what we love, and that just being together is special, even without words.
All the years of worry, tears, anger, and frustration from living with hemophilia took a lot out of us. But Joe and I stayed together and fought for our sons. Seeing them happy and living their dreams is the best result we could hope for.
Something that might surprise people is that our sons call us every day. Yes, every single day. Our family bond survived everything hemophilia threw at us. It made us stronger.
The refrigerator stays full longer now. The sound of my sewing machine and the scent of incense fill the house — I never sew without incense burning. The Amazon delivery person brings new puzzles to our door. Through the worst of the worst, one thing remains. The MacDonalds are close, despite being miles apart. And while Joe and I are in a new season of life, enjoying each other, the sacred silence of our home is well deserved.
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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