My infusion nurses have shown me that family isn’t always blood
With their unconditional support and kindness, they've become family
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“Family isn’t always blood. It’s the people in your life who want you in theirs. The ones who accept you for who you are. The ones who would do anything to see you smile, and who love you no matter what.”― often attributed to Maya Angelou
Growing up, my household consisted of my mother, my father, my brother, and me. We were bound by blood, biologically connected. But from a young age, I always felt a little “off,” even within my family. I didn’t know if it was the result of growing pains, sleeping too little, or not eating enough — the basic checklist we run through when symptoms can’t be explained. I silently dealt with my pain, and I got very good at pretending nothing was wrong.
When I finally received my Gaucher disease diagnosis, it explained a lot, but the realization hit hard. It meant my ailments might worsen over time, and there was no easy fix. Even though I had lived with health issues my entire life, this felt heavier. It was an answer, but a devastating one.
I remember getting the call during my workday. The word “Gaucher” was muddled across the phone, and I cried, gripped by confusion and the immediate realization that I needed to research what my life would look like.
At first, I had to receive enzyme replacement therapy at an infusion center while my body adjusted to the medication. Those early appointments felt incredibly lonely and isolating. I sat in a room by myself, away from my two babies at home, with no one who truly understood what I was going through.
My ‘found family’
Everything changed when I transitioned to home health infusions. What began as a medical necessity quickly became something more, a kind of unexpected support. The nurses who came into my home didn’t just administer my treatment; they brought compassion, encouragement, and the unconditional kindness and help I so desperately needed.
Infusion days aren’t always easy. Sometimes my skin is tougher than usual, my veins won’t cooperate, or I’m simply mentally exhausted, knowing the therapy will take hours out of my day when all I want is to feel “normal.”
But I have truly been fortunate throughout my Gaucher journey. For the past 14 years of infusions, I have been blessed with nurses who stayed in my life for years at a time. My current nurse has been with me for six years and is truly a part of my family. She has watched my children grow up and stood beside me through some of my hardest and darkest days. I know that each nurse who enters my life won’t be able to stay forever, but each one leaves behind something lasting. They have reminded me that compassion, kindness, and simply showing up for someone can change the course of a difficult day, and, sometimes, a difficult life.
When I was diagnosed, I wasn’t sure where my support would come from, but I’ve often found it when I wasn’t even looking. I also discovered that family isn’t always blood and can be found in the most unexpected places. Sometimes it is the nurse who gently starts another IV and sits beside you in your hardest moments, never making you face your journey alone.
My diagnosis taught me far more than how to live with a rare disease. It taught me that family isn’t just the one we’re born into, but the people who choose to love us along the way.
Note: Gaucher Disease News 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 other 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
