BY LAURA WILL

There are moments when time collapses on itself. Perhaps that is what trauma does –it pulls my attention through time, obscuring the present moment with images and sensations from the past. Four years ago Alden was four-months old. Laying on his safari themed playmat, he was beautiful and content; but, he seemed not to see the bright and enticing toys hanging above him. Holding my breath I shook a rattle inches from his face. He turned his head, slowly. Then placing the rattle in his hand, I smiled as he reflexively grasped it; but he did not look at it. Moments later I winced when it dropped from his fingers and rolled away.

It was the middle of May, in 2020, when I brought Alden into his primary care doctor with my concerns. The pediatrician said he was fine. My motherly instinct intuited something the doctor did not, and on Memorial Day I brought Alden directly into the hospital where we received the life-changing news that he had been born with a rare brain malformation.

Today, I find myself lying on the floor of the nursery, next to another little miracle, Blake. He is almost exactly the same age now that Alden was when we learned Alden would live with severe disability. Blake makes soft sounds, as his legs dance in the air before his eyes. He looks at his toes with curiosity, and then swipes the air in an attempt to grasp them. It is truly awesome to witness his cognition and coordination develop with seemingly unprecedented speed.

Having spent hundreds of hours in physical therapy appointments with Alden, it is surreal to witness this new baby do something simple, such as bring his hands together at midline around a dangling toy, with such ease. It’s breathtaking. It’s worth celebrating. And, the juxtaposition is jarring. Despite softening with the years, there is a sense of loss again as I revisit my first memories of being a parent of a child with disability, when expectations did not align with reality. More than anything, I am acutely aware of just how hard Alden must work to move, and play, and communicate each and every day.

When I pick up baby boy Blake, here in June 2024, my hands suddenly feel into the past. Without my permission, I can sense the weight of Alden. In my mind’s eye I am holding his infant body. I can feel the way it stiffened, rigid against me; and I can feel my budding understanding that something was not quite right.

I place Blake in a bouncy seat and notice the smooth eye movement with which he tracks my movements as I walk around the room. I know this is one of the subtle developments that I tried to explain was lacking to the primary care doctor when she dismissed me as an anxious mom. I was anxious, and for good reason. By observing Blake develop week after week, it is
increasingly obvious how correct my instincts were. There is an uncomfortable clarity of what I sensed was missing, as I see and hear this baby’s movements and cooing sounds.

I have heard other parents of children with disabilities refer to their child’s developmental milestones as inchstones, smaller but very much measurable. We prefer the term Aldenstones, a completely unique unit of measurement. While there will continue to be moments when comparison steals our attention, we will honor each child’s story on its own terms, finding amazement in Blake’s Blakestones and Alden’s Aldenstones alike. My husband and I feel so lucky to have another child, to guide another journey. Alden’s disabilities and life-limiting conditions have absolutely changed the way we parent. We have
unsubscribed from conventional measurements of success, and found ways to cultivate gratitude. There are so many doctors appointments and so much to stress about. But we also celebrate more.

We trust that we will (in all likelihood) have one son who walks, talks, eats orally, and will someday become independent; and we will have one son who does not. Alden, our forever nestling. No doubt, each child has challenges ahead. These challenges, and the way each tests us as parents, will be quite different. But, interestingly, many of the joys will be the same – the joys of laughter and family, the joys of music and sweet treats, the joys of snuggles and bedtime stories. I take a good deal of comfort in these shared joys.