Like most parents, I have had to pivot from our daily norm in recent months, and brainstorm ideas to keep my kids busy. Searching for new ways to keep them entertained and engaged is like my side hustle these days. If only my Google search could talk! After many suggestions, my younger son, Devin, decided to use our collective pause to tap into his inner chef. He’s taking home cooking with me to the next level with virtual classes, actively participating in the recipe planning, grocery shopping, and flawless execution of some of his favorite dishes.
This past week, Devin signed up for a Mac and Cheese cooking class. I set him up in the kitchen as the budding sous-chef that he is, with heaping bowls of different cheeses, milk, a variety of spices, and his preferred pasta at the ready. He beamed at me with approval, anxious to deliver a bowl of piping hot deliciousness for me to sample.
His smile makes my world go round, and I have been seeing it a little bit less lately. Devin is physically declining from his DMD, experiencing a dramatic uptick in falls. He understands what is happening, as he saw his older brother, Caeden, endure the same symptoms of this cruel disease. He is struggling to process the changes he’s experiencing.
Even though I have been down this road before with Caeden, strangely, it is harder with Devin. Maybe it’s because I know exactly what lies ahead for my precious boy, as I have an intimate understanding of the radical shift to a wheelchair, and its impact on a child.
Watching him take every delectable bite of his cheesy creation, I was smiling on the outside, acknowledging his accomplishment and encouraging him to keep going, to help him, and to fuel his passion for cooking.
But in the back of mind, that familiar thought crept in.
How long do we have? How long will he be able to walk and navigate our kitchen that he has grown to explore and love? Will it be months? A year?
As a mom, these thoughts shatter my heart on a daily basis. I can’t help it that they creep into my mind. I allow them in, understanding that I need to give myself permission to feel, to adjust, to mourn, but I don’t let them take residency in my heart. I look at my son’s faces, and pivot away.
I make an active decision to live in hope. Every single day, I live in hope.
I have no control over DMD, or its progression, but I do have control over my son’s happiness. Cooking is a lot of improvisation and being creative; focus on what you have, not what you don’t is what they say, right?
I will enjoy every bowl of Mac and Cheese my boy creates, regardless of whether he makes it standing or sitting in a wheelchair. Every stage of DMD will bring its many challenges, but I will pivot.
As his mom, I will always choose to pivot…