“Science, art, community, and nature make manifest that bad will or mistakes can lead to progress, like Bob Ross on his show The Joy of Painting reminding us that when we make big mistakes on canvas, we can turn them into birds—‘Yeah, they’re birds now!’”
—Anne Lamott, Almost Everything
My youngest starts kindergarten tomorrow.
That would be a simple statement if it weren’t so complicated.
But those five simple words are packed with anticipation and anxiety and change and sadness and loss and gain and so many different what ifs. It’s weighed down with years of What’s the next right thing for Tobin? and Will this bring him forward or backward? on our autism journey.
It’s the end of a reality that swept in and uprooted us for three and a half years as we made the two-hour journey to the city for therapy he desperately needed and then drove back home so our family of four could be together. What was initially a ginormous change for us, began to become a normal that brought so many really great things: Tobin improved with his behavior therapy and the team who loved him like their own child; I found community at the gym I joined (and lost 47 pounds!), with the parents of some of the children in Tobin’s school, with mutual friends (who became dear friends), and with family who invested in us during our time in the city.
I’ve come to realize sometimes things happen in life as a redirection. Sometimes we make those decisions ourselves, but often, it seems, life will completely block a path in order to move us down another.
This most recent navigational change has been completely exhausting to me.
I’ve been pretty open about the major downturn in Tobin’s behavior after our incident. We were seeing behaviors we hadn’t seen since before behavior therapy. Actually, we were seeing behaviors that we hadn’t seen ever. His teachers at school seemed sad when I would pick him up, having to give not-so-pleasant reports on his progress. We were riding in other people’s cars, and I was constantly worried he would damage their interior with his curious hands and need for destruction.
Because sometimes he did.
And picking up Cheerios from floorboards and wiping saliva “K’s” and “Q’s” off someone’s window has a way of making you feel like a burden, if when the person is constantly and consistently and genuinely assuring you you aren’t.
These are things I’ve discussed. But what I haven’t delved into much has been the effect this time has had on me.
I’ve been uprooted before, but this one has almost done me in, tossed about so much, my sense of adventure almost drowning in waves of despair.
Feeling like my body let my son down.
Feeling like my body let my family down.
Wondering how in the world I would not only get to yoga teacher training each Monday and Friday, but how in the world would I use it now that our time in the city had an end date.
Wondering what purpose I have now that everything has been upended.
A growing sense of dread that everything we’ve worked so hard for these past few years will roll back down the hill and we’ll be stuck in a valley of desperation.
Those moments when I would squeeze my arms with my hands to try and feel myself to see if I was still here.
It’s been hard.
We were feeling that familiar feeling of being prisoners in our own home, unable to take Tobin out in public, alternating one parent going and one parent staying.
But in this final day of liminal space, I’m seeing things at a little more of a distance.
I mean, as I attempt to type this, Tobin is crawling all over me laughing. He keeps grabbing my shoulders and trying to pull me down on the couch to lay by him and snuggle. And the thing is, we’ve been snuggling for almost two hours! I keep asking him other specifics: Do you want to go swing? Do you want something to eat? Do you want to play with your shapes or your magnet letters? And each time he looks me right in the eyes, shakes his head, smiles and giggles and tries to pull my shoulders down to lay beside him again.
These are moments we never had before.
For four and a half years, I’ve been the one to get the brunt of his anger.
He would cuddle and snuggle with Brian and Knox, always preferring them over me. But when it came to his rage and frustration, I was the place it landed.
It seems as though the wreck and the debris of its wake broke down the wall Tobin had between us. And now I’m the one he prefers, the one he snuggles with. He’s teasing with me now, with more eye contact than ever. He laughs with me and connects with me on a level I’ve never seen before, and to be completely honest, on a level no one in our family has seen before.
The curious thing is that ever since our last day in the city, we have had our Tobin back.
And even better than before!
He obeys better. He responds better. He communicates better than he ever has.
It’s as though the wreck and the ending of this challenging chapter of our lives turned a page in us, opening up a whole new level of connection.
As for me, my parents got me a bike for Christmas. A pretty bike (just like I’d hoped for!) with a basket on the front and storage on the back. I’ve been riding the 10-minute ride to the gym preparing for the 5:30 a.m. hot yoga class I have the opportunity to teach. It’s 14 minutes back, due to camouflaged hills, but I’ve got a cup holder for my coffee and a cell phone holder so I can listen to tunes and not feel creeped out by the dark silence of the morning. Oh, and also some pepper spray.
I have some independence now, with plans to ride to the grocery store and the post office and errands biking around my small town. I have some yoga ideas and opportunities, so my fear of a failed dream and time wasted is dissipating.
I’m seeing the horizon. Allowing some realistic hope to set in.
“We have all we need to come through. Against all odds, no matter what we’ve lost, no matter what messes we’ve made over time, no matter how dark the night, we offer and are offered kindness, soul, light, and food, which create breath and spaciousness, which create hope sufficient unto the day.”
—Anne Lamott, Almost Everything
There was once a time in my life when I felt so alone.
I was going through this really hard thing and I didn’t let people in.
Then I was angry because no one would help me.
And for a while, I had given up on humanity. All I could see were smudges in the canvas and I had lost the ability to see the whole.
But once time worked its magic, I was able to have some perspective:
How can I be angry with others for not helping me when no one knew I needed help?
This experience has been one of the most challenging in my life. But opening up in this way has allowed people to step in, to know of our hard and be practical, tangible love in our lives:
Then there were people who stepped in when we had holes in the schedule. Working around work, sacrificing time to take us to the city and back. Or taking us to go vote. Or driving us around for errands. My sister Alexa even stayed up all night with me when I had a sleep deprivation EEG scheduled the next morning and had to stay awake WITHOUT caffeine. (In case you’re wondering, 1 a.m. yoga, laughter, and scary movies do the trick!)
Our friends in the city volunteered to drive us places, checked in on us throughout our time there. We had friends from around the country sending us Tobin’s favorite Nightburnerz cars, a spa in a box, and we even had city friends offer their house for us to stay (including a former therapist of Tobin’s). Friends we haven’t been in touch with for years reached out to offer encouragement and check in on my health and Tobin’s progress. The nice fellas at my gym even gave me as many guest passes as I needed so that my carpool friends could attend yoga with me.
All in all, from October 3 to December 21, we only had three days without transportation to the city. Three days. It’s still unbelievable to me.
I’ve never felt so held in life.
Such a challenging time where I couldn’t find my bearings, yet being grounded in the love of others.
And I think that’s how it works.
When all you can see are smudges in the paint, errors in the vision planned, others can come in and make birds out of them. Pretty little birds that fly across the canvas of our lives, adding beauty and texture we never would have planned and never would have seen.
Because others have a way of pulling us away from our up-close view of the mess and see it as transformation, of a becoming, of a work of art we wouldn’t have experienced if we had withheld the brush.
It’s how we save each other.