I remember a time, when Wil was just transitioning into Kindergarten, and I expressed to Wil’s teacher consultant how I missed knowing what Wil was doing all day, with his therapies, and in class, as I had known when he was in preschool. She created a progress report that Wil’s paraprofessional could fill out every day and send home with him.
I also remember how Wil’s kindergarten paraprofessional and I would sit on the couch in the school’s lobby and go over his day each morning. All the hand-holding she did for me, and for Wil that first year in the “big leagues” at elementary school.
And, now, how Wil is starting to let go of that hand of his own choice. How he insists that he walk around to line at the start of the school day by himself, how he walks down the hall to the bathroom by himself, how he knows his schedule by heart, and walks off to occupational therapy, speech therapy, the library, with his paraprofessional still there, but he leads the way.
He’s growing up, my little boy. It was not so long ago, when he was only months old, and I was working with him doing leg exercises or dangled toys above him to bring his two hands together across his midline. The tireless days his occupational therapist and speech therapist worked on his pinscher grasp, and finally the excitement of success when he picked up his first Cheerio.
The milestones that came naturally to the twins, some a little early, some a little late, some right on time, found an indeterminate pause button with Wil. When will he get there? Will he get there? Will he ever ever get there?
Multiple halts for one start. The world shrinks down to a single Cheerio and all of the techniques determinately pursued to have two adorably stubby fingers successfully grasp it.
The patience, the diligence, the waiting, the wishing, the wanting, the please, please, please do this. The full focus on that one little, but huge, link in the chain.
Then, the miracle of the meeting of those two stubby fingers. The spark, the wires have connected! Oh, the fireworks they set off! How can I describe such a success as that? Life, somehow, is better, is brighter, is less frivolous, for knowing the joy of two fingers coming together to grasp a tiny oat O.
My life for so many years, was built day after day on those teeny-tiny pieces. The huge little links in the chain. And now…now my boy is growing up. The intricate pieces are still there to be woven together, but he understands more of them now, and is putting them together himself. He chooses his own books and practices reading them with me as the listener. He has his own math sheets where he counts numbers and colors in the correct shapes, with me only as a guide where he gets stuck, easily holding a marker with those still adorably stubby fingers that worked so hard to pick up a Cheerio.
Wil is now a participant in his own success.
This is what we have all worked so hard for, and continue to work for. The wheels are turning and in forward motion. Wil still needs help and guidance, yet he understands so much more of the world around him now. And, so, that allows my view to open wider beyond the teeny tiny pieces.
I would never have chosen this journey with Down syndrome on my own. It would have scared me too much. And, I know, Down syndrome scares a lot of people. Yes, Down syndrome carries challenges, many of them. But, I think, the scary part is looking at it too broadly, or at least I did at first.
Like anything, we need a big grand vision to work toward, but life really comes down to those teeny tiny pieces. Those little huge links in the chain. Some days are hard, they are really, really hard, and I wonder will we ever get there? But, then, I remember those two adorable stubby fingers, and how painstakingly long and tirelessly we worked to get them to come together. How at times, it seemed we never would. Then, that day they did, and how amazing those fireworks were. How powerful the mix of help from others, hope and faith is. The patience, the diligence, the world shrinking down to that one little huge piece, and how sweet the celebration of when it did come together.
I never would have known that life secret without Wil and made the connections with the people I’ve come to know because of Wil. And, that is why I celebrate that teeny tiny extra chromosome for the life gift that it is.