My role as a caregiver includes advocating for my child
No one knows my daughter with Pompe disease as well as I do
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When my child was diagnosed with Pompe disease, my whole world changed in an instant. Suddenly, I wasn’t just a parent; I had to learn how to be a researcher, a scheduler, an insurance negotiator, a medication manager, and, most of all, an advocate for my child.
I always associated advocacy with being loud, bold, and outspoken. I pictured microphones, legislation, and organized rallies. But in reality — my new reality — advocacy is quiet. It happens in the exam rooms or during conversations with doctors. It happens when I read the data, but feel that my child’s experience is different.
Throughout our lives, we are encouraged to trust doctors — and for good reason. Physicians dedicate years to understanding the human body, rare disorders, and complex systems. In the world of Pompe disease, this trust deepens as we rely on teams of specialists for enzyme replacement therapy schedules, cardiac testing, lab results, and expert interpretation of data.
Yet doctors are human, just like the rest of us. They bring years of expertise, but also their opinions. Their experience often carries a bias from previous patients. While doctors rely on research, sometimes that research lags behind lived reality. Many of us, especially those affected by Pompe disease, know this to be true.
And that is where the caregiver steps in.
Learning to speak up for my child
No one knows my child as I do. I know about the subtle changes in her breathing. I can tell when she starts exhibiting fatigue on what should be an easy day. I recognize the difference between normal after-school crankiness and her whole body being run down from the day.
I have found advocating to doctors to be a delicate balance. For instance, if I ask questions about alternative treatments during appointments, I’m mindful not to seem distrustful or imply I know more than the physician, because I don’t. I do, however, know my child better than they do. I see it as an equal partnership, an expert collaboration to provide the best care for my daughter.
In the early days after her diagnosis, I felt intimidated around doctors. Medical terminology and acronyms I’d never heard filled the room. I would nod my head as if I understood everything; I didn’t want to come across as someone who didn’t know what was going on with their child! But I was pretending. Looking back, that was obviously a huge mistake. I should have asked questions and received clarification before leaving the doctor’s office. Instead, I left feeling confused and intimidated by Pompe disease.
At some point, I got into a rhythm with my daughter, the testing, and the doctors. Something shifted, and I became more comfortable. I knew my daughter’s patterns, I knew how her chart was tracking, and I could tell when something wasn’t right. I’m now able to speak up and ask better and more challenging questions. I’m not confrontational, I’m proactive.
As caregivers, our instincts are not irrational. They are informed by love and proximity. They develop after spending hours upon hours by our child’s side and watching them navigate the world. Sometimes our instincts can lead to a second opinion or a medication adjustment. Sometimes they just lead to closer monitoring.
As if caregiving weren’t exhausting enough, advocacy also taxes our emotional stamina. We have to push back when insurance denies services, or coordinate between specialists who may not communicate seamlessly. Being a caregiver and advocate means constantly carrying the mental load of anticipating the next appointments, lab results, and hurdles.
At the same time, though, advocacy is empowering. Every time I speak up, I am making my child’s needs known. Every time I respectfully question, I strengthen the care she is receiving. Every time I trust my instincts, I reinforce that I am not just a parent, but a vital part of my daughter’s medical team.
It is always important to trust your doctors. It is equally important to trust yourself. When something feels off, say so. When you need more information, ask for it. When your child needs more support, push. The goal is not to oppose your child’s medical team but to stand beside them as a collaborator. Caregiver advocacy is rooted in love and grows with experience. It is thoughtful and consistent. Being a powerful advocate for your child means trusting your instincts, finding your inner voice, and refusing to let anyone speak louder than your conviction.
Note: Pompe 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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