Neverland Without a GPS

As a special needs mom, give me mean, bitchy people any day. I can respond to hate with hate or simmering rage. But kindness. Kindness undoes me. It strips the strong façade from my face and leaves me a shivering mess. People who say they understand rip me apart. It’s not that I don’t want people to be kind. It’s that I have grown to not expect it. When someone is compassionate or sympathetic it leaves me as vulnerable as a new spring leaf in a thunderstorm.

Few strangers have shown unexpected kindness to Caleb and me. When Caleb was four, a woman was in line behind us at a restaurant. Caleb was stimming and talking in high-pitched echolalia. I felt her looking at him, at us, before I ever turned around. After a few tense moments I pulled courage up through my spine and used it to propel me to meet her gaze. I was expecting a reprimand or a nasty stare. Instead, I was met with watering eyes and a smile full of sadness.

“Hi there,” she said. Caleb beamed.

I don’t remember the rest of the conversation but I do remember that she told me she was a pediatric nurse. She said it in the quietest of whispers, with a tilt of her head that tore into my soul. It took a breath from me.

“So you know?” I asked.

“Yes,” she replied.

From the time Caleb was little I learned to look straight ahead rather than make eye contact with anyone. I’ve written before that staring does no good, no matter the situation. Even if Caleb were a neurotypical child having a tantrum, rude stares, whispers and tsks only make a tough situation much worse.

The problem with not making eye contact is that you can miss the kindness as well as the criticism.

Another time we were shown such radical kindness was on Caleb’s Make a Wish trip in 2014. At 18 Caleb chose his favorite place in the world, Orlando. We had several blissful days at Disney World and then tried our luck at Universal. Caleb has never liked anything faster than the Buzz Lightyear ride, so he and I waited on benches in the shade while Sophie rode the tallest one.

Sophie had just finished her freshman year of college but I still worried over her every second. I was also worried because the day was warming up. One of Caleb’s medical conditions is that he can fatally overheat. At midday, the temperatures were cutting it close for him, even though we were under a fan in shade. I kept looking at the exit for the ride, waiting to see Sophie running toward us, because I knew she would. She knew it was getting too hot for him. She would worry so much about him that she wouldn’t even enjoy the ride.

With my head swiveling between Caleb and the exit, I’m sure it wasn’t hard for anyone who was paying attention to connect my worry dots. Most people don’t. The woman sitting next to me did. As usual, I was avoiding her stare, preoccupying myself with a loose thread on Caleb’s t-shirt.

“I can watch him,” she said, laying a very kind, soft hand on my shoulder.

“What?” I asked, sure I had misunderstood.

“Your son. I can tell you’re worried about your daughter. I’ll keep him safe while you go find her.”

Kindness. It created a lump in my throat that made it hard to speak.

As lovely as she was, there was no way I would have ever left Caleb with anyone I didn’t know. Her offer was so pure that it made me want to hug her, even though that would have been social overkill for the moment and it would have simultaneously set Caleb screaming because I was touching a stranger.

“You are so sweet,” I said. “Thank you, but I know she’ll be along any moment.”

Sophie was. I told her the story. She said, “You didn’t even consider it, did you?”

What would life be like in this often violent, turbulent world if we were met with kindness instead of fear?

People who meet Caleb now, when he’s 21, six-feet-two and 240 pounds see a happy, confident young man. They see a kid who laughs at fart jokes and still loves to color and do preschool word searches. I need to learn to see with their eyes.

Since the day he was born in 1996, when he was taken from me at 12 hours old so he could have open-heart surgery in another state, I have lived in fear. I was learning to let it unravel when he was four months old, when I was recovering from the trauma of caring for a critically ill newborn, when I was told he needed another heart surgery, a balloon catheterization. I slipped the cloak of fear back over my shoulders and that time it sank into my blood, my bones.

There are so many children with worse stories. There are so many parents who have lost their children. None of us can compare stories because our paths are so different. But I bet we all have that plasma of fear running through our bodies.

Kindness is the antithesis of fear. Kindness negates worry and smooths over so much negativity. But fear eats kindness for breakfast and spits the bones out from under the door.

I am trying so hard to extricate the fear from my soul. I feel like I’m always holding a breath, waiting for the next diagnosis or injury or outburst. Months, years can go by with little incident but that soul-sucking fear keeps me constantly barely balanced on a precarious log over a rushing river.

As Caleb nears his high school graduation in a few months, I find myself evaluating his life. Milestones can do that, I know. I’m trying to look back through all of the sadness and extricate the kindness and love that has been there all along. I know it was there. I know it’s my interpretations that have extruded and buried that beauty. Maybe there’s comfort in fear, in expecting the next bad thing, since so many bad things have happened.

After 21 years in Neverland, I have to believe that there was so much more pixie dust and kindness than there ever was cruelty and exclusion.  I know how gratingly cringe-worthy my next paragraphs will be. I apologize in advance.

If you find yourself in Neverland, look for the fairies. Look for the pixie dust. Listen for singing from the forest. In my version, I kick Captain Hook in his nose and walk away.

Now that Captain Hook is out of the way, I borrow his periscope and am astonished to see the scales fall from my eyes as I peer through it. Hook used it because his periscope could see everything. It illuminates Caleb’s past and I fall to my knees seeing all of the kindness that I had chosen to not remember.

There are cashiers at our favorite grocery store who go out of their way to greet Caleb. Untold devoted teachers, therapists, doctors, surgeons who have all given their best to help Caleb be as healthy as he is. There’s a wonderful young woman at the restaurant we visit on Saturdays who brings Caleb word search books, crayons and the dressed-up ducks he is obsessed with. We have amazing friends who brought balloons, cake and favors to Caleb’s birthday party without even being asked. These same friends came over when it was snowing in January because they know how it frightens him. They knew they could make him smile when he was scared.

I began writing this blog on a Sunday night, the day before taking Caleb on a past-due trip to the DMV. I had been dreading the crowds, the stares, forgetting one doctor’s signature on a line so small I couldn’t even see it. Within 30 minutes we were handing over the handicapped parking placard forms to the clerk. I had told myself that morning I would only look for kindness for the entire day.

The clerk smiled at us and Caleb smiled back. Our forms were processed in seconds, and then she told me that his state ID expires in July.

“I know,” I said, in my head groaning already, which is definitely not part of looking for kindness.

“We can renew this right now if you’d like.”

Kindness.

We were sent to the picture station where another clerk took about five pictures of Caleb, trying to get one with his eyes open. We waited a moment and then she handed us the new ID, saying, “Good bye, Caleb. It was nice to meet you.”

People turned to stare at her kindness. Caleb did his happy growl. I swear I felt Tinker Bell swirling around our feet.

You can find kindness and pixie dust anywhere if you look hard enough. Even at the DMV.

 

Photo credit: Timothy Kurek