My 4-year-old knows more about pain than any 4-year-old should: not because he suffers, but because I do. Each day is an uncertainty. I’m never sure if I will be functional or shut away for days in a darkened room, feeling like I took a hot yoga class while eating raw chicken from 2007. As a mother I’m one of my son’s greatest teachers; but my chronic condition teaches him more about illness than I ever wanted him to know.

The neurologists have diagnosed me with an invisible disorder. It can’t be seen like a broken arm or taken pity on like a heat rash. My particular condition has no cure. I can’t even enjoy my own drug commercial with random bathtubs and a disembodied voice listing all the possible side effects (like a heat rash). Still, my pain is real. My husband sees my pain. My son sees my pain. My migraines are an unrelenting daily pain that changes me as a person and as a parent.

“Mom, are you feeling ‘medium’ or ‘small’ today?”

“I’m feeling ‘small,’ Mister.” I say with a wink.

This is my son’s invented code for my pain level: “small, medium and large.” “Small” equals “good,” so today we are able to take walks, build Legos, and watch The Music Man until he tires of pretending he’s Robert Preston, which he never does. These are the days when I can be totally present. We laugh and blow kisses, and I’m the caregiver I envisioned I would be when my body was making his tiny lungs and eyelashes. Yes, I had migraines before he was born, but there were only two to four a month and my husband and I were prepared for that frequency. We were not prepared for them to worsen after he was born.

My “medium” days are when I’m in pain but I can still function. Those days my body chooses to wear a 40-pound suit made of clanking metal kitchen utensils while I feel like I’m coming down with the flu. My medicine is doing its job avoiding the worst but it’s not keeping me at my best. I spend a lot of the morning encouraging my little guy to play on his own until I have no choice but to take him and escape to my big bed. There I hand him an iPad and doze while having nightmares that playing on an iPad for more than three minutes is the equivalent of giving my child non-organic hot dogs with red dye number five laced with crack. We are doomed.

Tonilyn with her son on a “small” day

On the days I’m feeling “large” my son has no mother at all. My migraine is in full attack and my only defense is to lie perfectly still in a darkened room and vomit up that chicken from 2007. I’m useless. I am no longer a part of whatever plans we had for that day, and his Dad takes over all duties and fun (luckily, my husband has a flexible work schedule that allows him to be home when needed). If my son is disappointed, he doesn’t show it. If he is mad, he doesn’t tell me. I’m left alone in my misery, hoping he understands this is not my choice. My choice is to be a mother, but my pain steals that from me.

My worst days aren’t the days I’m “large” and not being a parent at all but the days I’m in pain and trying to be one. My pain leads me down a path of frustrated impatience and invites me to a land where practicality rules and fun is banished. Four-year-olds do not live here: No one should. I’m Alice’s angry Red Queen ordering my son around: commanding him to stop dancing and get his shoes on. He stops and stares at me, and I’m mortified. Silently, I curse myself, take a breath, and apologize. Perhaps my apology will keep our trust intact. I explain to him for the 19th time that I’m feeling “medium” hoping that he will understand. Later when I’m feeling “small” I can’t help but think my pain isn’t my own.

How can I shield him from something I can’t even control? I wish he didn’t have to see me suffer in an unlit room. I wish there were days where his first question in the morning wasn’t, “Mom, how are you feeling?” I’m envious of lives lived without pain. Hand in hand my little guy and I trot through the mall, and I’m jealous of all the other mothers. They seem so healthy and happy—not a Red Queen moment in sight. I remember what I was like before my pain. Rarely did I shout, “Off with her head!” Will my son ever know that woman?

“I’m sorry you’re sick.”

“Thank you, Mister.”

“It’s okay,” I hear him say in my ear, “I’ve got you.”

We do not take love for granted in this house. On my good days we are playing, doing, laughing, and simply being together. I can’t afford to miss one moment. I don’t want to. We don’t take love for granted on those days because we can’t, and now my son has shown me that we don’t take it for granted on any other day either. I always assumed there was only one side to my pain. My son has just shown me there are many sides and (unlike me) maybe he hasn’t been simply focusing on the painful ones.

I take my 4-year-old’s quiet words, “It’s okay. I’ve got you,” with me every day. I know he’s saying, “I’ve got you through this,” and in saying that I know we’ve truly got each other. I can feel the love behind this pain, through it, and around it. Perhaps we’ve found the best kind of silver lining we can with what I’ve been given. Perhaps through all this we’re learning that we’ve got each other. And that’s definitely a lesson worth having.