The other day my three-year-old son and are were headed to an aquarium to meet some friends and I had to stop for gas. It was a warm summer day so I rolled down the back windows of our mini van to give him some air. I was making faces at him to entertain him while the gas tank filled and I was giggling as hard as he was.
In the moment, for just a minute, I forgot about my husband’s ALS. I was an ordinary mom playing with her son while she pumped gas. My van looked like an ordinary van. I couldn’t see the straps that held my husband’s wheel chair in place or the back of the van where the wheel chair ramp came down. It was like a veil had been moved and I could see the colors more clearly, and I saw what a good life I would have, if it wasn’t for ALS.
It’s like ALS puts a layer of gray over everything. You still laugh at the silly moments, find joy in the excitement only a three year old boy can have over googly eyes. You still enjoy the tenderness of a kiss with your husband, or a quick look over an inside joke the two of you share. But it can all be quickly eclipsed as you watch your husband struggle to raise a fork to his mouth to feed himself. You do what’s necessary, you help him eat the last of his mashed potatoes and clear his plate. You help him get dressed and wash his face. And you don’t let yourself think about the day when he won’t be able to do anything for himself.
The gray of ALS just washes into your life and leaves everything feeling dull and a little less. I work hard to hold onto the color, by remembering to laugh and to hug as much as I can. Taking time to meditate and keeping notes of things I want to remember. I look back at pictures of my husband before ALS and I feel happy and sad at the same time. So grateful for the time we had and so sad that he is reduced to sitting in a chair, hardly able to move.
ALS steals so much away, but I won’t let it take away the color from our lives. I am going to keep finding ways to see through the gray and live life as we are given it. We only have this moment that is here now and I don’t want to miss any of it.