Last week, I shared with you my terror when Nathan disappeared from our home after school. He was only missing for a brief time, but it was a terrifying reminder to me that although he is six years old now and quite clever, he is wired differently. He lives in the moment, which can be a Very Bad Thing in circumstances like I described, but it can also be a Very Good Thing.
I don’t live in the moment.
When I read a book, I constantly check the progress indicator in the bottom left corner of my Kindle, stopping when I know I need to move on to something else. I don’t allow myself to become so engrossed that I lose track of time and allow myself to be late in doing the next thing.
I’ve been a runner since high school and a regular distance runner for nine years. I love me a good training plan, even if I’m not always able to follow it to the letter. But you know what I almost never do? Run without a plan. I might cut a run short if I’m feeling poorly or run a little longer if I’m feeling good, but I never go out and run for the joy of running, even though I love running. I simply do not start without a timer and a plan.
I am a slave to time.
To see what living in the moment looks like, I only need to observe Nathan. When he was in preschool, he would drop my hand as soon as we arrived at his classroom, head straight for the play kitchen, and pretend like he didn’t know me until I gave up on getting a “goodbye” and left. When I returned a few hours later to pick him up, however, he greeted me with grins and hugs so powerful you would think we’d been separated for ages.
This weekend at his t-ball game when he was up to bat, he faked a strike – multiple times – even though he can hit the ball consistently. He loves to bat, and he especially loves to be watched while he bats, so if he has to pretend to miss the ball a few times to prolong the enjoyment of his at-bat, that’s what he’ll do.
In his kindergarten Christmas program, he was charged with operating the clapperboard when his pal Lucy called out, “Action!” and he enjoyed it so much he did it twice. He also rode the rocking horse prop that was part of the set, and went to the microphone for multiple unauthorized encores. He made people laugh while he was doing it, which encouraged him to do it even more.
He was living in the moment.
Living in the moment may mean wandering off, sticking your hands in a pile of dirt that turns out to be an ant hill, or driving your coach crazy by darting through the gap in the outfield fence during a game, but living in the moment also means making people laugh again and again, being generous with hugs, milking the joy out of life, and never being a slave to time.
There’s a widespread belief that people with Down syndrome are always happy. It’s a myth; my own child is proof. But one benefit of living in the moment is not just that you experience joy in the small things, but that you don’t dwell on the disappointments. My son may not be happy all the time, but it’s not for lack of trying. He is gifted with the ability to seek joy in all things.
Living in the moment means moving on from tears to the Next Joyful Thing.
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NOTE: The photo above (the same shot from last week’s post, but in color), was taken in the therapy office waiting room one week ago. Nathan was squirming in the seat beside me when all of a sudden he grabbed me around the neck, pressed his cheek against mine, said “CHEESE!” and made a clicking sound strikingly like that of a camera shutter. I whipped out my phone, asked him for an encore, which he happily obliged, and took this selfie of us. It’s one of my fave photos of all time, and I have it because I let him pull me into the moment.
Rachel says
Great post for World DS Day! Oh, the joy of living in the moment!
Carolyn says
I was doing a Google search on Down Syndrome and Cerebral Palsy, when I cam across a comment on a post you did in 2011. A commenter had mentioned his daughter had a dual diagnosis of CP and DS. My daughter also has both, as well as Ehlers Danlos Syndrome and autism.
I was wondering if you had ever come across any others with the dual diagnosis, and if you do, if you could direct them to our small Facebook group https://www.facebook.com/groups/891175927570865/?ref=ts&fref=ts. There are only 10 families on there so far, but because we all get told we are the only ones, it is hard finding each other!
Thank you
Andi says
I absolutely will! I don’t recall any others posting here in the past but I will be on the lookout!