When my son, Theo, was about two months old, we sat in a pediatrician’s waiting room. I aimlessly looked around and tuned in and out of conversations of other moms and kids as they moved around and carried on in the waiting room. For some reason, my attention picked up a conversation between a mom and the receptionist. I tuned in when I heard the mom saying, “Oh yah and when do we have to be back again for the next check-up…okay, and can I take home a Pokémon sticker for my son at home?”
I swallowed back tears twice over. The first tears were a longing to be so carefree the next time I’d need to take a child to a doctor’s appointment was an afterthought. The second was for the hope that one day I would have a son or daughter who would want and love a Pokémon sticker.
Our journey appeared nothing like this mother and child’s. Our family had already spent a week in the NICU, two days in a row at the doctors, met a neurosurgeon, had two X-rays and spent far too many 4 a.m. sessions down the Google rabbit hole. Even if our path started to smooth out, I knew in that moment there was no undoing what I had learned in those few short months.
I knew that I had to remember this Pokémon sticker. I just didn’t realize at the time exactly why.
Here we are a year and a devastating diagnosis later, and I still think about that Pokémon sticker. It is not lost on me that it’s almost comical that a Pokémon sticker has been the catalyst for so many mental cycles in my head. For some reason, the sticker always felt like a symbol to me, but I could never quite process what it was that kept me wondering about it.
On my “days of growth” (to put it gently), I thought of the sticker as an unwanted reminder of how my life may never look like I had expected — a life where my child’s medical needs don’t dominate most of my waking life. A life where the future for my child is exciting and open-ended. But I think that type of thinking is what usually gets me into trouble.
On my better days, I originally thought it was a lesson telling me that although our journey is different, it is still valuable. That Theo might love a Pokémon sticker, we just have to try and see, a parenting theme we keep on repeating to help him progress. But, although that is true, that wasn’t quite it.
I shared with my husband that I was trying to process why this Pokémon sticker was so significant. Well, wouldn’t you know it, he told me that the whole point of Pokémons is that they change and evolve. I couldn’t believe it. It felt scripted. It felt serendipitous and a little ridiculous. This whole time I felt like I needed to chase the meaning of a Pokémon and it was actually the most obvious symbol: evolution.
I knew that life would have some big things in store to teach me along the way and help me evolve. I have no doubt that at some point in my life we would have been touched and inspired by great kindness. I believe that we would continue to know the power of meaningful relationships through our wonderful friends and family. I just didn’t know that we would find these things through an experience that can be so disguised with confusion and challenge. I didn’t know that sometimes I’d have to work to accept and appreciate some of the biggest acts of kindness and love I’ve ever known, because the pain of it all can work against you.
But as I learn how to gain perspective, my heart and mind is opened and changed by being touched and inspired in a way I’m convinced is deeper and more extraordinary than I could have ever known without having Theo. A year ago I didn’t have the capacity in my mind to be able to process how the experience of parenting a child with complex disabilities would impact me. In fact, I actively remember being annoyed and resistant to anyone or any internal push towards finding a silver lining. It felt irreconcilable, both because we didn’t know the direction of our path, and because the capacity had to be built.
But, it wasn’t built by me. It was built by my mom and mother-in-law who drive two hours every week to take a night shift, cook us dinner, and offer help as we travel to appointment after appointment. It is our friends who live all over the country checking in, sharing our story, and being there for us in a new way. It was through our family driving hours to Chicago to walk alongside us in an Epilepsy 5K. It’s a long-lost friend from college sending a loving email about how touched she is by our story and how we have changed her perspective. That is what built the capacity. That is what I would have missed had I not paid attention to a silly, little Pokémon sticker. (I would have also never found this ridiculous metaphor.)
To think that my chronic sorrow could be answered by such beauty found in our community of family and friends would have seemed unfathomable to me at many points in the past. Yet, I stand with our story and with all of its bends and bumps. I would have never understood the true power that is love mixed with kindness in response to grief, heartache, and challenge without this journey.
Theo’s Village is what we call our people. We are so grateful for our community, as they are the guiding force helping us to find our way and evolve.