Like glitter, grief has a way of sticking around

Back-to-school season has always been one of my favorite times of the year. Walking through aisles full of pencils, erasers, spiral notebooks, and colored pens takes me back to my elementary school days. I especially loved choosing a big pack of construction paper. Opening a new package, breathing in the woody, papery smell, and feeling the rough sheets in my hands was the best part. With some Elmer’s glue, crayons, and scissors, I could keep myself entertained for hours.

What I loved most was adding glitter to the construction paper. I would draw a picture or write something with glue, then pour glitter over it until everything sparkled. The glitter always ended up everywhere: on my clothes, shoes, the table, and even in my hair.

At first, glitter gets on everything you touch. No matter how hard you try to keep it in one place, it finds its way into every corner of your life. Over time, you clean up most of it, and things start to look normal again. But sometimes, you open a drawer, move some furniture, or step into a patch of sunlight and notice a tiny sparkle you missed. Opening a jar of glitter makes me think of grief.

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It never truly disappears

Raising my sons, Julian, 30, and Caeleb, 20, who both have severe hemophilia, has taught me a lot about grief. Their diagnosis broke my heart, and I wondered if the bleeding disorder would limit them. In their early years, the grief of not knowing what the future held was overwhelming. I never wanted a medical condition to stand in the way of their dreams. The sadness and fear of what might happen often felt like too much.

Years of hospital stays, ports, joint bleeds, and inhibitors brought many struggles for my sons. Familiarity with needles and infusions was never what I wanted for them. My grief was especially strong when Caeleb faced complications from an inhibitor. It was hard to witness the repeated joint bleeds that damaged his right knee and ankle, and hearing my son scream in pain was often more than I could bear. Still, I found a way to get through it.

More than 30 years later, grief reappears when I see Caeleb struggle with mobility. Lately, his pain has been overwhelming. Seeing his struggle breaks my heart, but there is hope despite the pain. Caeleb doesn’t give in and stay in bed; he keeps moving. Damaged joints and chronic pain do not stop him from chasing his dreams.

Raising my sons has taught me that grief never completely disappears. Like a tiny sparkle of glitter that unexpectedly catches your eye, grief will also surprise you. It settles into the corners of your heart, then resurfaces during a joint bleed, a surgery, or simply when you wonder how life could have turned out differently. But those moments no longer define our story.

Hemophilia has left something else behind: resilience, compassion, courage, and hope. I have seen my sons build meaningful lives despite the challenges they have faced. They have shown me that while grief may leave its sparkle in unexpected places, so does love.

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.