Motherhood allows no time for a break, even with Gaucher
How I find a way to answer my baby's needs, during an infusion and always
There are no vacation days when you’re a mom. If infusions once meant chilling on the couch, taking a nap, or watching my favorite TV show, today they look quite different for me.
My baby, for instance, is almost 9 months old, and while we try to explain that I’m getting medicine for my Gaucher disease through an infusion, he doesn’t quite grasp that yet and still needs to be fed, played with, and cared for like any other day.
When I was pregnant, the idea of breastfeeding with an IV in my arm felt impossible. But motherhood has a way of unlocking strength you never knew you had.
Since my first postpartum infusion, I’ve breastfed with no issues. The secret? Avoiding the inner elbow for IV placement. Getting the needle lower down the arm means I can bend and cradle him freely without disrupting the flow of medicine.
I’m determined to be unstoppable even with this challenge. I’m still able to feed my son, get down on the floor, and play with him. The tricky part now is keeping him from turning the IV tubing into his newest toy.
Adjusting to changing demands
This chapter of life is a delicate balancing act. Managing a chronic illness while raising a young child requires flexibility, patience, and a lot of improvisation. While I’m incredibly grateful to receive infusions at home, that doesn’t mean it’s easy. There are moments when it’s overwhelming — when I need help picking him up or simply moving around. As he grows, it’s becoming more challenging, and at times, I’ve found myself wondering if I can keep up.
Asking for help doesn’t come naturally to me. But I’m learning to say, “This is what I need.” And I’m realizing that as my son gets older, I’ll need to continue leaning on my support system, whether that’s family or friends.
While it can sometimes feel frustrating to juggle infusions as a young mom, I’ve learned how important it is to prioritize both my baby’s needs and my own. In the past, I didn’t mind when the nurse showed up at random times; I was home alone, after all, and my schedule was flexible.
But now, things are different. I ask for a heads-up before she arrives, and if I have a mommy-and-me class or something else important to us, I don’t hesitate to ask her to come later. Setting boundaries has become essential — not just as a parent, but even more so when navigating the dual demands of motherhood and chronic illness.
Mamas, it’s so important to advocate for yourself during this time. Needing treatment doesn’t mean your role as a mom has to take a back seat — the two can coexist. Being a mother means showing strength, but it also means knowing when to ask for help. You deserve support, and your voice matters.
That might look like telling the nurse what time works best for you, or bringing your baby along to an appointment because sometimes there’s no separating the two parts of your life. When you take care of yourself, you’re better able to show up fully — emotionally and physically — for your baby. No matter what, standing up for your needs is essential.
And to all the moms out there juggling it all, often unseen: You are superwomen. I see you, and you’re doing an incredible job.
Yes, I’m hooked up to medication every other week. But I’m also singing lullabies, building block towers, and soaking in my baby’s joy. There may be no breaks, but there’s also no shortage of love, laughter, and strength. I’m proud of how far we’ve come — not just me, but all of us living this coexisting life of treatment and motherhood. We are stronger than we know.
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.
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