As a mother, I have to take care of myself as well as my child
My afternoon of guilt, all from simply asking for a friend's help when I needed it
A couple of weeks ago, I faced a moment that many parents, especially those living with chronic illness, will recognize all too well. As a mom with Gaucher disease, I receive infusions every other week. And with a 10-month-old who’s constantly on the move, I’m always juggling how to care for him while making sure I don’t miss the treatment my body depends on.
It was infusion day. Normally, my husband stays home or a family member helps so I can focus on getting through the enzyme replacement therapy. But this time, none of them was available. My husband had to go into the office, and none of our family could come over. That left me alone with our baby on a day when I very much needed support.
I debated my options. My son is curious and active — crawling everywhere and eager to play with the IV pole. If he could, he’d probably try to pull the line right out of my arm. I knew I couldn’t safely manage both him and the infusion, so I reached out to a friend and asked if she could watch him for an hour.
That was the first time I’d ever dropped him off with someone who wasn’t family.
When going it alone isn’t the best policy
I felt a wave of guilt that day. He was tired, and I wasn’t there to rock him to sleep. I couldn’t help but question whether I was doing the right thing. Was it OK to leave him just so I could sit through treatment?
By the time I picked him up, he was asleep, snuggled on the babysitter’s shoulder. He’d been fine. I’d made the right decision. But that didn’t erase the guilt.
As moms, we’re so good at internalizing impossible expectations. We want to be everything, do everything, never miss a moment. Living with Gaucher or any chronic condition adds another layer — because our time, energy, and even our bodies aren’t always under our control.
That day I had to remind myself of something important: My baby needs a healthy mom. Taking care of my health isn’t optional; it’s necessary. My son needs me to stay well, and that means making sure I get my treatments of Cerezyme (imiglucerase), even if it means asking for help or missing a few moments with him.
Mom guilt doesn’t magically go away, but I’m learning to talk back to it. I’m learning that sometimes asking for help is the bravest thing I can do. That letting someone else rock my baby to sleep doesn’t mean I’m not enough. That my baby doesn’t need a perfect mom; he just needs me, doing my best, day by day.
And that’s exactly what I’m doing.
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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