As a parent of a child with autism, everyday there is something I do that is singularly the most difficult.
It isn’t juggling a managerial schedule with the needs and transportation schedule of my child.
It isn’t planning his finicky lunch packing or making sure he gets enough exercise or even keeping him out of the Krispy Kreme donut case at the gas station.
It isn’t even listening to Supercalifragilisticexpialidocious on repeat for the 647th time in the car on our 45 minute commute in the morning. (Btw, if you can do this in rush hour traffic, whilst unwrapping an Egg McMuffin for your kid and balancing a latté between your knees…you win.)
So what’s the most difficult thing I do everyday?
Staying in the present.
Let me explain.
Earlier this week during my daily cruise through social media, I came across a video of a young man with autism. He was probably in his late twenties. He had facial hair. He was wearing a TMNT t-shirt. He was clapping and squealing and he kept smelling his hands.
And suddenly I Marty McFly’d 15 years into the future, and was staring directly at my son.
It was more than I could take.
And I wept. Hard.
As I look at my precious boy, even though he is 11 now, I still see this:
Sweetness and eyelashes and eternal, snuggly cuteness. Be honest, when you looked at that photo of Zion, what you actually saw was this:
How could anyone say no to that?
I guess the point is that yes, this little preciousness is going to be an adult someday. But for now he is 11. So he still looks like that tiny little boy to me. And it is endearing when he jumps and squeals and runs around giggling and sniffing cereal boxes and pillows and armpits.
But to imagine this behavior from a 26 year old?
With facial hair?
So I force myself to stay in the present. We live in this moment. Right now.
Sure, I have planned financially. I know where he will live when he is 30, and who will raise him if/when I die.
But I can’t live there mentally. If I did, I would surely go mad.
So I live for today.
His sister and I learn to laugh. About everything.
When we are at a Mexican restaurant and Zion hollers, “Hola, amigo!” at every waiter that walks by the table…we learn to laugh.
When we are at a farmer’s market, and Zion nonchalantly walks over and touches a stranger’s tattooed bicep…we learn to laugh.
When we are in a library, and Zion yells “Mama, can I go poop?“, and everyone turns to look…we learn to laugh.
Because clichés aside, laughter really is the best medicine.
Living in the moment and embracing happiness as hard as you can for as long you can is really all you have.
Because someday, yes, that little Puss-in-boots-eyed child is going to be a man.
And as a society, we are going to have to figure out how we are going to manage our now 1 in 26 autism-diagnosed children who will grow up into our 1 in 26 autism-diagnosed adults.
Adulthood. A land where there is no ABA therapy. Or government-assisted programs. Or insurance coverage for services. Where squealing and sniffing is no longer cute, and awkwardness and fear reside. Where 1/26th of our society is living with aging parents or in group homes.
Is that something you want to think about?
But we have to. We must.
I believe we can plan appropriately for the future, while still living for today.
This morning Zion is on perma-jump. If we don’t get kicked out of this hotel before check-out time it will be a miracle.
He is jumping on the bed. (And as much as I paid for this room, I am okay with that.) He is giggling so hard it almost looks painful. He has squealed, “We go to the beach!” about 100 times.
As we make our way south to visit my bestie and her family for the week, I am so thankful for this little spring break trip with my two little companions. And while I drink this very strong, and even more overpriced cup of espresso, I watch as Zoë chases Zion down the hillside on this beautiful and brisk North Carolina morning.
And I am at peace.
Even if just for today.
-Yesterday is history, tomorrow is a mystery, but today is a gift. That’s why it is called the present.