My 5-year-old son proudly holds out his palm, displaying his front tooth, and then smiles, the gap between his teeth seeming to shine. “I can’t wait for the tooth fairy to come,” he says. “I better put it under my pillow now.”
“What do you want the tooth fairy to bring?” I ask, pulling him onto my lap. Our tooth fairy is inconsistent. Sometimes she brings loose change, sometimes a small gift — like a toy car, a Star Wars figure, or a package of balloons. It’s almost as if she makes panicked runs to the drugstore after bedtime.
“Well,” he says, pursing his lips. “Maybe she can bring something to make you feel better.”
My heart sinks. I hate that he’s wasting tooth fairy wishes on me. That my disability has somehow become his burden.
‘Will you ever get better?’
I’m a stay-at-home mom to my son and 3-year-old daughter. Though, before I was sick, my days were a whirlwind of activity, parks, dance class, and play dates. Ready to make homemade pizza or pasta at a moment’s notice, I was the mom who was always willing to run through the sprinklers at the park, spontaneous and carefree.
Then about a year ago, seemingly out of nowhere, I developed debilitating myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome. Now being a stay-at-home mom literally means staying home. Some days, it’s an accomplishment just to get out of bed, with my body feeling like its battling against the flu. Other days I’m able to get up, but have just enough energy to read some of a book before the weight of my head pulls me back to my pillow.
On the days I do manage to leave the house, I walk slowly, all the while scanning for somewhere to sit. I can only manage play dates if they’re within a few blocks and there’s an elevator in the building. I try to do as much as I can, but I often feel like it’s not enough for my son. Especially on days when he spends his “wish” currency on my health, instead of something fun for himself.
A few weeks ago, we were snuggling on the couch, having just played an entire game of Sorry! We’d made it through the game without any tantrums. It was a happy, treasured moment. My son snuggled into my side and whispered, “I love you, Mommy.”
“I love you too,” I said, smiling.
Then he sighed, “I really miss when you used to play with me.”
“We just played,” I said, more defensively than necessary.
“Outside, Mom. I miss being outside with you.”
“I miss being outside with you too,” I said, modulating my voice so it wouldn’t break.
“Will you ever get better?” he asked.
I wanted to tell him of course I will. But I don’t ever want to lie, to him or to myself — so I didn’t promise I’d get better. I know that in that moment, maybe all he wanted to hear is me tell him things would change one day. But the truth is, I’ve worked so hard to adjust to this new normal, to find peace in this existence and try to pass that onto my children. So, I know it’s not fair to any of us to promise a reality that we may never live again.
“I’m trying so, so hard,” I said. “But if I stay like this, I’ll still be your mom no matter what. I will be a different type of mom, but I’ll love you just as much and be here to talk, play, and listen.”
I explained that the things I can give are the most important. I can give him my attention, my support, and my love. Most days I believe this is enough. Others I don’t. I carry my guilt around my neck like a string of stones, weighing me down even more than the fatigue. I add one on each time he begs me for something I can’t give him.
Battling with guilt, accepting it’s love
And now, as my son stands before me, with a gap-mouthed grin, holding out his two teeth like found treasure, my heart feels like cracking.
I don’t want his wishes. I want him to wish he could fly or for crappy toys he sees on commercials when I don’t fast-forward, like light-up train tracks or pillows that look like animals.
“That’s the sweetest thing,” I say, leaning down to kiss the top of his head. “I’m not sure the tooth fairy can do that, though. Can you think of anything else?”
“But that’s what I really want,” he says.
I start to redirect him again, then stop. Maybe my son’s selfless wish isn’t a sign of his loss of innocence and everything I’m doing wrong. Maybe it’s a sign of innocence at his purest and everything I’m doing right.
In the end, isn’t this what we want? To have children who love and care deeply? Who prioritize health over a trinket or a handful of coins? Maybe it’s possible to accept where you are, but still hope for a different outcome.
And according to some experts, my gut isn’t far off. Phyllis Sachs-Yasgur, LCSW, who specializes in children struggling with traumatic experiences such as onset of chronic illness, says, “It is okay to tell kids that we really want to get better, but some things are not in our control. We can have more than one feeling at a time. They’re not mutually exclusive. ”
But is believing in magic a step too far? According to Harriet Cabelly, counselor, parent coach, and author of, “Living Well Despite Adversity,” it’s not. She explains that when children wish for a parent to get better, it’s essentially a childlike way of praying.
“We all have some kind of belief,” she notes. “In our life, it’s spiritual, in children’s life, it’s often magic.” She adds that as long as it’s also grounded in reality, it’s beneficial for children.
The truth is, like my son, I live in a world where reality is laced with magic. Every time the clock hits 11:11, I make a quick wish to heal, and same for birthday candles and shooting stars. While I rationally doubt these wishes impact the cells in my body, the truth is somewhere deep in my heart: I believe they might. I need that hope. It makes sense my son needs it, too.
“OK, let’s see what the tooth fairy can do,” I say, “But just in case she can’t, maybe you should have a backup wish?”
He taps his head again, this time with his whole hand, until suddenly his whole face lights up. “I know!” he shouts. “Pizza every day!”
I start to say that I’m not sure the tooth fairy can do that, either. Instead, I snuggle him close, letting that magic linger a little longer.
Heather Osterman-Davis is a mother of two living in New York City. Her work has appeared in Time, Slate, Brain Child, Creative Nonfiction, Tin House, River Teeth, Literary Mama, Parent.co, The Mighty, Tribe, and Lupus Chick, among others. You can find her on Twitter.