Self-Care Brought Me In and Self-Care Made Me Run Out

There's an unexpected rhythm to life when you're a parent, but especially when your child has a rare disorder. It's a dance of profound love and complex emotions, a journey where the music often changes from a Taylor Swift love song to devil heavy metal without warning.

Today, like many other days, I was reminded of the unique path our family walks. As I entered the gym, an important part of my self-care routine, I couldn't help but notice three boys by the drinking fountain, seemingly the same age as Ford, slurping water from the drinking fountain. ?Such a simple joy of life as a kid…so ordinary, so many of my own core memories at a drinking fountain just like that one……. yet so distant from my reality.

I rounded the corner to the room with the treadmill, only to find myself facing a window that looked directly into the gym where the boys Ford's age were playing basketball. They were running, laughing, their cheeks bright red. In that moment, a choking sensation in my throat of 'what-ifs' and ‘what the hells’ crashed over me. I wondered about the life Ford might have led in a different scenario. What would it be like to see him run with energy, to be an athlete, to be one of those boys in the gym? Maybe one of them would be his real life buddy had things been different.

The weight of these thoughts was so intense that, within minutes, I found myself fleeing back to the sanctuary of my minivan – or more accurately, my wheelchair van. The gloomy Seattle weather mirrors my emotions. (I’m fairly certain rare disease parents should not live in Seattle from Nov-March, or at least have a second home in Arizona) I was grappling with the raw realities that come with parenting a child with a rare disorder - the grief for what could have been, the glaring awareness of the differences, and even the fleeting, painful thoughts about Ford's future and the ripple effects on our family life.

But here's the pivotal part of my story. After allowing myself a few hours to process these emotions, I returned to the gym. Self-care is a multifaceted journey, especially for families like mine. It's about physical strength - as Ford grows and needs physical support. But it's also about mental resilience. For me, no type of therapy has been as transformative as the simple act of moving my body.

This brings to mind the powerful words of my favorite storyteller, Kindra Hall, who speaks about how we can "choose our story, change our life." This philosophy resonates deeply with me. We all have a narrative, especially parents like us, navigating the complexities of raising children with rare disorders. Our stories are full of unique challenges, fears, and joys. But with this, we have choices.

I chose to leave the gym because I was overwhelmed, because I needed that moment to acknowledge and respect my grief. Yet, I also chose to return, a testament to the resilience that quietly defines us. It's a resilience born not only out of mental strength we constantly build, but from an honest confrontation with our vulnerabilities and an acceptance of our reality.

This journey is not just mine - it's a path shared by countless parents who fiercely love their children. From deep sorrow to immense joy, all while loving and accepting our children for the incredible individuals they are. We navigate through a spectrum of emotions daily and find an understanding that it's okay to feel sadness, grief, or frustration about the dreams and experiences that our family might miss out on. Yet, it's equally important to embrace the beauty in our reality, to find strength in our resilience, to continue learning and growing through these experiences.

Our stories, while unique, share common threads of love, resilience, and the power of choice. We choose how we react, how we cope, and how we continue to love and support our children. In doing so, we not only care for them but also honor our own journey, acknowledging that it's okay to feel, to grieve, and to rise again.

In choosing our story, we are not denying the challenges we face. Instead, we are embracing them as part of a larger narrative, one where love, resilience, and acceptance play leading roles. This is the untold strength of parents like us, a strength that lies not in certainty, but in the courageous choice to face each day with honesty, love, and hope.

-Effie Parks