After the dark days of hemophilia, I’m thankful for peace at home

I rumbled around the house one evening, wrapped in my favorite oversized sweatshirt and cozy socks, the comfort like a warm embrace. I left my latest craft, hands marked with thread and bits of fabric, to refill my iced tea. As I made my way to the kitchen, I left behind a trail of colorful remnants — a gentle, imperfect sign of a peaceful night. The house was hushed and calm as my husband, Joe, hunched over a jigsaw puzzle in the family room. I felt content, the quiet wrapping around me like a lullaby.

This is one reason — along with watching movies and indulging in whatever foods we crave — I find the empty nest exhilarating. While I know many parents are overcome with tears as silence fills their home, for me, my children’s absence is a source of lightness and possibility. I welcome this stage with open arms and genuine excitement.

My sons, Julian, 29, and Caeleb, 19, have severe hemophilia. Julian’s case was textbook, with no lasting complications, even after a three-year inhibitor as a child. Caeleb’s experience has been different.

Caeleb was diagnosed with a high-titer inhibitor at 11 months. Over the years, he endured every complication: damaged joints, weekslong hospital stays, uncontrollable pain, a factor VIII allergy, loss of mobility, and chronic pain.

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Silence at home means success for my sons

During the years that I cared for Caeleb, my identity shifted. I went from focusing on my career and keeping the home to becoming an unrelenting advocate: getting doctors from two hemophilia treatment centers to work together, dropping everything for a painful bleed, and learning to push my son to attend school despite a swollen joint and the need for a wheelchair. My focus was on helping Caeleb to live life, even as his hemophilia grew debilitating.

I wouldn’t change that role for anything, even though I often felt invisible. I put my own dreams on hold because my love for my sons outweighed every sacrifice I had to make. Their future — one filled with kindness, purpose, and hope — became my only measure of success.

Today, they are succeeding.

A muscle bleed once kept Julian in bed for several days, unable to walk due to the significant pain. He is now traveling, chasing auditions and opportunities to perform. And Caeleb, with a strength second to none, is living in the dorms at the University of New Mexico, pursuing his passion for the digital arts. He has come a long way from barely being able to climb the steps of the school bus.

Despite the silence and solitude that permeate my home, my heart is warm. My phone will ding with a text from Caeleb, full of emojis and reassurance that all is well. Julian calls regularly to keep in touch. He wants to know about everything that is happening at home!

Hearing about the hope and excitement of their days is an answer to my prayers.

Home is a safe place where they are always welcome, free from judgment, filled with love and joy. Hemophilia no longer rules the roost; it is now a rare visitor that stays at the doorstep.

As for the empty nest? Joe and I revel in this chapter. The silence between us becomes a sanctuary; together we create, relax, and immerse ourselves in new languages, our souls replenished. Each time I pick a stray thread from my clothes, gratitude wells up within me. We survived the darkest days of hemophilia and now stand, hand in hand, surrounded by breathtaking beauty.

For this new season and every day ahead, my heart bursts with gratitude, overflowing with thanks for the peace and possibility that now fill my life.

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.