The last few weeks, I’ve had some random instances of sharp, shooting pain in my lower back. This doesn’t come as a shock considering I’m lifting and carrying kids a lot, and loading Gage’s chair in and out of the car a few times a day. At a recent doctors appointment, they weighed Gage’s empty chair and I was surprised to learn it’s sixty pounds! No wonder I have to grunt each time I lift it into our SUV. I want to be stronger and able to care for my kids in the way they need, but I’m fully aware of my own limitations.
Thinking of my own aches and pains makes me think of how Gage’s little body must feel. His muscles are constantly in overdrive. You know that feeling when you’re stressed about something, or focused really hard on a task and all your tension seems to pool in your neck and shoulders? I imagine that’s how Gage must feel all over a lot of the time. When he’s working hard to do something as simple grasp a spoon, it takes several attempts and a great deal of focus and must wear him out. Even when he’s fully enjoying himself or super excited and laughing, he often goes into a full extension, with tense muscles from his head to his toes. I imagine that tension must take a toll on his body, and that my achy back is probably nothing compared to his.
And truly nothing can compare to an ache of a different kind – heartache. In the last several weeks, three other children with CMV have lost their lives due to their condition. There’s not an adequate way to describe the turmoil you feel while you grieve the loss of someone you only knew through photos and status updates online and a shared diagnosis with your own child. You can’t help but try to imagine what their families are going through, realizing you could never fully understand unless you’re in their shoes, and then hoping you never have to be. As heart wrenching as each loss is, I think one of the best ways we can honor their memories is to cherish the time we do have with our kids. Even with the aches and pains and added challenges, we get to have these precious souls with us day to day. Bringing joy through their smiles and laughs. Adding value and purpose to our lives. The simple gift of Gage’s presence is something I never want to take for granted.
So as Gage continues to grow, and his equipment grows with him, we’ll figure out better ways to manage the heavy lifting. Hopefully we’ll learn how to sense and better understand his pain and the best ways to address it. And without knowing what the future holds, we’ll strive to trust in God’s timing and treasure each day together.
