5 Things I Learned as a Physician and Mother of a Medically Fragile Child

I’m a neurologist, and my daughter has severe neuromuscular disease. Here are the five things I’ve learned as a physician and mother of a medically fragile child:

1. You can feel really, really alone.

Having medical knowledge when your child has a serious illness is a double-edged sword. You’ll likely get a diagnosis faster, but you will also struggle with knowing too much. You know everything that can happen, and you’re able to recognize the signs — long before anyone else — of advancing disease. You keep it to yourself because you don’t want others to worry.

It helps to find people who understand, and for me, this has been a closed Facebook group for parents like me. They are the true experts of the things I care about, and I can be “just” a mom there.

2. Being “just” a mom means you don’t always have all the answers, and that’s OK.

My first experience as a patient in my field was when my medically durable 3-year-old son got viral meningitis. I felt like a paranoid neurologist mom taking him to the hospital with headache. When the spinal tap showed 800 white cells (normal is under 6), my medical knowledge went out the window. This is viral, but this is a lot of cells! Viral meningitis can be managed at home — are they going to send us home?

The doctors wanted to leave it up to me, but I felt paralyzed. I called my friend (another neurologist mom) who cleared my head: I was a mother who didn’t feel comfortable taking her son home, so we belonged in the hospital.

3. Desperation is powerful.

We are trained to practice evidence-based medicine, but when you’re facing a devastating disease without a cure, you want to believe in something (or someone) that can offer hope. Science is important, but when there is no cure, you still have to offer hope (see #4).

4. Kindness goes a long way.

Having a child in the pediatric intensive care unit (PICU) can be hell on earth. I think I put up a good front most of the time, but the wounded animal was not far from the surface. When things were not going well, I clung to the little acts of kindness from our caregivers: sympathetic looks, pats on the shoulder, acknowledgement of my daughter’s beauty and strength. I believe the simple act of caring can give hope and get families through the worst of times.

5. Serious illness can be financially devastating. Families with medically fragile children need support and the system for determining disability and eligibility for services is broken.

I think we all know this, but you don’t understand how bad it is until happens to you.

When my daughter turned 4, she could no longer sit without support. Her disability was apparent with a fleeting glance, but she didn’t meet our state’s definition of disabled. I was sure that I, a motivated neurologist mom, could change this with a few phone calls. I was wrong. It eventually worked out, but it took eight months and it was ridiculously complicated. When we finally got the letter from the state that acknowledged that my now BiPAP-dependent daughter was disabled, it felt like a victory. It meant that we finally had a chance to get much needed help.

I have almost 20 years of medical experience and treat people with developmental disabilities that most have never heard of. If I had this much difficulty getting my state to simply acknowledge the obvious about my own daughter’s disability, what is it like for everyone else?

I believe that our world would be better if everyone had a personal connection with a loved one living with disease and disability. This is why we share our stories.

Follow this journey on Julianna Yuri.