When I Trust My Intuition as a Parent of a Child With a Medical Condition

When my daughter was 18 months old, I started to notice she would get extremely tired in the middle of the day. She still took naps, but we’d be at the park playing or at a friend’s house and she’d run out of energy very rapidly and just lay on the ground. I brought her to the pediatrician and insisted something was wrong. We did testing. Everything was fine. So I went on with life trying not to worry about it, but feeling very uneasy.

About a year later, her symptoms had worsened. After a bout of stomach flu she had a seizure. When we were at the hospital being evaluated, I found myself in mama bear mode for the first time. I had to be confrontational when I am not a confrontational person. I insisted her seizure was part of a larger range of symptoms that I had been noticing for over a year. I insisted we get a referral to a metabolic doctor. And fortunately for me, I had a nurse at the hospital who listened. My daughter was later diagnosed with hypoglycemia.

This was the first of many times I’ve had to learn to trust my gut as a parent of children with medical issues. I used to be a member of multiple online parenting groups. People would hop on and ask about their kids’ rashes, symptoms, etc., and random strangers online would offer advice. In a world where we are bombarded by constant opinions, the most important voice to learn to listen to is your own inner intuition. That feeling that something is off with your child, or that they just aren’t acting right, or that that rash isn’t normal — listen to that.

I had a real fear after a year of noticing symptoms in my daughter and no diagnosis that I was just “seeing things.” Maybe that I was being a “hypochondriac.” Maybe she was healthy and I just couldn’t accept that. Maybe I wanted her to be sick so I was seeing things. I’ve had similar feelings prior to my son’s celiac diagnosis and my youngest’s diagnosis with eosinophilic esophagitis (EOE) and food protein-induced enterocolitis syndrome (FPIES). I have been validated time and time again when that gut feeling said something wasn’t right and it turned out to be true, not once, but three times.

One of the hardest things I’ve had to learn to do as a parent of children with medical conditions is to trust myself. Trust myself in the face of voices online and trust myself as I deal with doctors who insist there isn’t anything wrong — when really they just didn’t run the right tests or the condition is hard to diagnose. I’ve had to learn to trust myself as I’ve worked with brilliant doctors to develop treatment plans for my children. I’ve had to learn to trust that our way of dealing with these conditions may not be the way that everyone deals with them — but if it feels right and they are progressing then for us it is right.

I’ve learned a lot in the almost decade I’ve been a parent, but my most valuable lesson has been the growing confidence I’ve had in my own intuition. That is what makes us as parents a unique caregiver for our children — we have that intuition and more often than not our intuition is spot on.