On Instincts, Gut Feelings, and Reframing

This post is written from the perspective of a parent with a child in the CHYP community.

This story will probably sound familiar to many of you: eight and a half years ago, our then-9-year-old son was in the hospital with debilitating pain that no one could explain. By the end of a week of trying a battery of medicines and tests, all that the doctors could say was that every result was normal except one: the measure of antibodies for streptococcus–which was through the roof.

The head neurologist said he didn’t “believe” in PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), but other specialists had started to mention it, along with the dreaded words “chronic pain.” I will never forget the compassion of the pediatric pain doctor and the psychiatrist, their kindness and gentleness, and their referrals to the medical team. That team ended up being our support from then to now, helping our son not only get through high school but come to thrive, ready to take on college next year.

That first hospital experience–as well as the month of illness that had led to it–was my entry into the completely destabilizing experience of being the mom of a kid with a strange, ever-changing, little-known, mysterious illness. Later, when I got to know the medical team and the CHYP community, I came to realize that actually our experience had been incredibly lucky. Even with the neurologist’s skepticism, we got care from other experts at the children’s hospital who could recognize what was going on and connect us with people who were familiar with the condition and could offer us support. Other parents are not so lucky and end up going to doctors for far longer, trying to figure out the source of their children’s pain.

But our experience was also an introduction to the overwhelming world of managing a child’s strange illness, with doctors giving competing explanations and ways forward. I am highly educated, but I am not a medical doctor. Who do you trust? How do you somehow feel your way forward and navigate the different kinds of advice and information that we all now have at our fingertips? How do you learn how to parent when sometimes the best things you can do turn out to be against your deeply felt inclinations?

As I think back over the years that we have seen our son manage the aftereffects of PANDAS–relapses into chronic pain, obsessive-compulsive disorder (OCD), anxiety, and depression–often the hardest thing for me was that balance of needing to trust my instincts to care for him while also needing to be re-trained as a parent.

His therapist taught us not to ask how he slept and how he was feeling not to focus his attention on his body. We had to acknowledge the pain while encouraging the action that would distract from the pain: “It’s so great that you went to school even though you’re feeling so terrible.” We had to swallow our own fear and anxiety to always present our confidence that he was going to get well, even when we didn’t feel it ourselves. We had to learn how sneaky and manipulative the OCD could be, how it could manifest in new ways as he got older, and how it could warp his perceptions of reality and amplify social anxiety.

I know that, even now, I am careful about what I say to him and how I say it. But then I sometimes worry if I have learned to be too careful: Does it keep me from being as easygoing and teasing as I am with his younger brother? Can I recreate the kind of breeziness that would, in turn, help him increase his social confidence?

By now, he’s been through more emotional growth and self-awareness than most kids or even most adults, and his years of relapse and recovery have made him one of the wisest people I know. As he graduates from high school and heads off to university in the fall, I have to learn a new way of being with him. It’s like taking off the training wheels–letting him go on his own, giving him the gift of my confidence that he has the strength to get up again when he (inevitably!) falls. And, of course, in doing that, for once, I will be like every other mom watching with heart-stopping pride as her child walks across the stage to get their high school diploma.