In a photo my husband took of me almost sixteen years ago, I am leaning on the double stroller in front of me, my two babies are perched inside, and the slightest hint of a smile plays on my lips.
What that photo does not reveal is that I was in the throes of a flare-up of my ulcerative colitis, weighed 84 pounds, was weeks away from my next hospitalization, and just a couple of years shy of the first of four major surgeries.
On our very best days parenting can feel like a herculean task, meeting the needs of the little minds and bodies that require our constant, consistent care.
But for those of us who are parenting while living with chronic illness, that herculean task can feel more sisyphean. We push mightily against the debilitating pain, complicated medical regimens, and heavy fatigue. And always lurking is the knowledge that at any moment our illness will come crashing down on us like an enormous boulder.
This was my parenting reality. On good days—or at the very least, better days—I looked like every other mom, taking my young kids to play dates, driving them to music lessons, shuffling them down chilly supermarket aisles. But then there were other days, bad days, when I was too sick to leave the house. Days when I parented from our worn denim-blue sofa while my young children played nearby. Days when I relied on my mom or my friends to do the driving, run the errands, prepare the meals. And on those days I worried that it was not enough. That I was not enough. That my kids would suffer as a result of a childhood punctuated by their mom’s hospitalizations, and that my illness had cast an irrevocable dark cloud over their innocent youth.
Now the little boy in that photo has left for college. His baby sister is a sophomore in high school. And it would seem my children have emerged from their unordinary childhood fairly unscathed. I would even venture to say that experiencing life with a chronically ill parent endowed these young adults with certain extraordinary gifts.
My children learned to sit with themselves.
There were many days, weeks in fact, when my kids did not leave the house. These days were simple and predictable. My little boy would often stand by the window for thirty minutes, spellbound by the gardeners (he called them “mow-men”). In this way minutes strung together into hours and then into days. My kids became adept at entertaining themselves. Now, as teenagers, they still find themselves content in the quiet. In the absence of phones and screens and keyboards, they can sit with themselves and with their thoughts.
They learned that vulnerability is not a weakness.
I know for sure that on my worst days I could not have gotten by without help from the people in my life who loved and cared about me. My children observed this early on and still appreciate when someone is there for them with a kind word or a helping hand. They realize that it truly does take a village, and they actively seek out these connections in their lives. My children do not shy away from needing others or from being needed.
They are excellent bullshit detectors.
No amount of makeup or false giddiness can throw my children off the trail. They know exactly how to see through a shiny veneer and uncover the truth that lies beneath. They are incredibly attuned to the feelings of others, and instinctively know if someone is hurting or afraid.
They know that some days will be simply, terribly, awful. And they are ok with that.
There is no getting around the fact that life is messy. And my kids have seen some very bad, dark days. But they also know that the following day, or maybe the following week, things can be better. They are resilient, optimistic, and strong. I feel confident they will truly relish the good days that come there way, and will have the conviction to tackle the hard and messy ones as well. This is real life.
And they are ready.