The Movie Of Our Lives

What story will you tell?

One day a while back, I was in my car getting my NPR “Fresh Air” fix. Terry Gross had been interviewing someone whose name I can’t even recall, but something that person said has stuck with me, even years later.

“The difference between a sad ending and a happy ending is where you put the credits.”

We can use this thought as inspiration during our rough times. The times when our high needs children are suffering. The times when we as their parents are struggling, unable to figure out what’s wrong with them, or what’s wrong with us. For the times we feel stuck. Thinking there is no way we can endure this for the rest of our lives. Our pain, a weighted blanket, and we are trapped beneath.

Looking back on my own life, in the first few days, months and years after we learned Jack had significant special needs, I felt encased in a heavy glass box. I could see the world around me, and could sort of hear it, but at the same time, remained somewhat detached, consumed by anxieties swirling about my mind. At the time I thought this was my new normal. That things would never change.

I looked at my friends with typically developing children around Jack’s age. I was so grateful for their love, compassion and support. Yet in my sorrow and anxiety I twisted their blessing of friendship into an unhelpful cudgel with which to bludgeon myself. If they were in my situation, I thought obsessively, they would handle this all so much better than me.

Stories about special needs parents who were able to get tremendous resources for their children intimidated me. My uncertain attempts at getting Jack additional therapies beyond Early Intervention involved calling our insurance. All for nothing. I’d just learn that what Jack needed wasn’t covered and hear limp explanations as to why that was so.

Everywhere I turned, I felt like I failed Jack as his mother. If the credits rolled then, the story might have been a sad one, of two parents grieving the loss of their hopes and dreams for their child. And of a child trapped in the prison of his mind and body.

But thankfully the credits didn’t end there. Life hasn’t gotten magically easier. And trust me, we have our share of worries and concerns about Jack. That will always remain. But we ourselves have adapted and changed. And our story has evolved from a painful something that happened to us, crushing in its intensity, to something more. It’s an opportunity to take a master class in persistence and resolve. And love.

Jack still experiences his pain and cognitive difficulties, but it’s not the whole story. The camera also pans out to show his joys and his exuberance too. He gives us love in ways he was unable to as an infant. And I recognize his love in ways I was unable to years ago, as an inexperienced parent. Over time, I even became better at getting resources for Jack. But it took years.

I don’t know where our story will go. Life doesn’t promise any of us a happy- cry, feel-good, miracle ending. But I know something now that I didn’t know years ago, when I felt like a failure at this special needs parenting. While I may at times struggle, despair and cry, the victory is the effort itself — not in the outcome. We just have to keep showing up.

Someday the credits will roll at the end of my life (hopefully a long time from now with decades of healthy years between now and then). As I take my final breaths I hope to look back and think to myself, despite everything, I persisted. Winning or success in life isn’t determined by outcome. But on how we conduct ourselves in our journey along the way.

(On a more lighthearted note, here’s a link to Adam Sandler on SNL this week singing a hilarious song about being fired (partial lyrics below). It’s nice to think that sometimes things do work out in the end.)

I was fired.

I was fired.

I was fired, so sad to tell.

Well, I never saw it coming.

I got fired from SNL.

Between seasons, I heard a nasty rumor that I was getting the sack.

I tried to call Lorne Michaels, but he never called me back.

…

Well, it broke my heart to pieces

’Cause SNL was my home.

Where could I do my silly voices now?

I never felt so alone.

I was fired.

I was fired.

NBC said that I was done.

Then I made over 4 billion dollars at the box office.

So, I guess you could say I won.