I take comfort from knowing the exact age of this tree.
It was late fall. Sarah was barely a year old. We were toddling through our front yard one day and under the crunchy brown leaves we found a maple tree sapling. It was standing straight and as tall as it could under the weight of the propeller seed pods still attached to its stem. We dug it up, careful to get all the roots, and replanted it in the "just right" space in our backyard. We nurtured it and watered it and from then on it became the Sarah tree.
At first we measured the growth of Sarah against that of the tree. Sarah was taller than the tree for a few years, yet both stretching upward and growing strong. But trees grow differently than children. I was focused on the growth of three children by the time I noticed the size of the Sarah tree. It was healthy, with a thick trunk. In the summer, with its full bouquet of bright green leaves, it would provide shade for the kids as they played on the swing set.
Now the Sarah tree is eighteen years old. It doesn't visually stick out as something unique in our backyard. It blends in with the other trees - some of which Adam planted, some of which were provided to us by the wind. I was telling someone about the Sarah tree recently and I said I thought its height was about fifteen feet. Adam clarified and said it was closer to thirty. When I got home I leaned my wheelchair all the way back and tried to see the top of the tree. I couldn't.
The changes in the Sarah tree seemed to happen so quickly. I am trying to take notice of how and when things change. The seasons, the trees, the flowers, and my kids. I take notice of the changes in my body so I can be one step ahead of ALS.
In speaking to a fellow PALS online, they suggested I watch the movie The Curious Incident of Benjamin Button (originally a short story by F. Scott Fitzgerald). They said it gave them a different perspective on growth, change, and what it means to progressively "grow" with ALS. I watched Benjamin age in reverse, and go from an old man to an infant. I watched as the knowledge of this affliction had an impact on the choices he made for himself and others. I was intrigued by his unwillingness to be a burden to those as he grew "younger". There was a scene where the scales were even and Benjamin held the knowledge of a fully grown man but his body was becoming that of a young boy. There was nothing he could do about this reverse growth. This rings true for me. ALS is reversing my body - I struggle with things like feeding myself, dressing, self care - those things that a parent would do for a toddler. My voice has become high pitched and slow. I will only regress more. Yet my mind continues to be that of a full grown woman.
The Sarah tree will continue to grow. My kids will mature and flourish. The seasons will change, the flowers will bloom, and maybe the wind will bring us new growth. I will manage the Benjamin Button within me. Some of it I will notice. Some changes will happen so quickly that it will take me by surprise. Change and growth - in either direction - will just happen.