There are two types of people. Today I met them both.
For a moment, I forgot.
How can anyone forget?
Forgot is probably not the right word. For a moment, I neglected the millions of thoughts and feelings I have when I think of Hunter syndrome, of having a child with special needs.
I pushed them aside as we walked along the well-worn path through our favorite place in the world, the local forest. The sun was high in the sky, which is a rarity here in Ireland. I held my eldest son’s hand, while his younger brothers raced off ahead with their daddy chasing them as he pushed a vacant wheelchair. In that moment of laughter, as the gentle breeze rustled the branches which hung low all around us, I forgot. I snapped a photo and cuddled my eldest son as he whistled and laughed.
I didn’t notice them at first, and I suppose they had no reason to notice us — apart from the fact that my husband was using our son’s wheelchair as a car and pretending to chase down our youngest sons all while demonstrating his best impression of an engine revving.
We go to these woods early.
We go early because sometimes it’s too hard to go when we know a lot of other families will be there. Sometimes it’s too painful to see what could have been or deal with the stares, comments, and obvious avoidance of our family. Sometimes it’s to ensure our eldest son actually enjoys himself to some degree as he has a lot of sensory issues.
I recently had a conversation with a friend of mine. She had asked me, “Is it true that people stop and actually stare, like proper stare at you guys?” Sadly, I had to tell her that it happens far more often than people realize.
Yes, for a moment, I neglected to remember what Hunter syndrome brings to our lives daily.
I spotted a family of four up ahead of us. They had suddenly stopped and were looking in our direction. I thought they were observing my husband and his antics, but I quickly realized they were looking past my husband and were actually staring at my eldest son Ethan and me.
My husband, oblivious to our audience, yelled back to me, “Does he need the chair, or can I chase these two up that track?” He nodded toward the smaller, steeper track between a few trees leading to a clearing.
“No. You can go up there, but wait for us,” I answered.
We can never go too far without the chair because Ethan may suddenly get tired and need it. He cannot tell us this, but he can sure as shit show us this.
I watched as my husband disappeared through the trees, making a siren noise as he went. The family had moved on with their walk. I could no longer see them as the bend in the path thankfully obscured them.
I took the same track as my husband after Ethan decided he was not walking up that shitty, dirty, lumpy track without his chair. I did think about following the longer track, but I knew that Ethan wouldn’t be able to walk that distance to reach his chair.
I called out to my husband who was still making siren noises over the boys who were screeching and squealing.
Do you ever feel eyes on you?
Well, that’s the feeling that crept over my body as Ethan’s fists hit my stomach. Then came his roars. Then came his bites, and finally my husband reappeared with the chair, apologizing.
We strapped an aggressive Ethan in the midst of a meltdown into his chair. Our other boys stood watching from a safe distance. They are used to this. They know that, in these moments, Mommy and Daddy have to mind Ethan. It’s a harsh reality for our boys, for us, and for Ethan.
Ethan has no idea who or why he hits. He cannot control this. This is part of his syndrome, and as much as I hate it, we have to sometimes restrain him for his own safety. No one, no one, ever wants to do that, especially a parent to their child.
Once Ethan was calmer, I glanced around. I couldn’t shake the feeling that we were being watched.
And we were.
I could see two grown adults with two beautiful little girls standing at the top path, on higher ground, looking, no, staring, staring down at us. It was ironic that they were on higher ground. And that’s how it felt. That’s how it always feels when people stare. It feels like we are being judged.
They may have been surprised. They may have looked to see what all the noise was. They may have been watching to see how we handled the situation. But I don’t really care why someone stares; the fact that they are staring is enough to upset our whole family in seconds.
I felt beads of sweat drip down my face as I stood staring back at them. Quickly they walked away. We didn’t see them again.
We loaded the boys into the car and headed off to the beach. No one was going to ruin our day out. We just wanted to be like everyone else and enjoy our holiday weekend with our family.
We are lucky to live off the west coast of Ireland; that is something I try to never forget. Galway is beautiful, with many beaches, woods, and some breathtaking scenery. We walked along the beach with three happy boys. We sat and ate a few biscuits while we watched dogs run in and out of the water.
It was peaceful and still early enough in the morning to be part of only a handful of people walking along the coastline. We decided to walk along the park next to the beach. My middle son, J, is a budding photographer, so he was busy snapping pictures every time he saw his older brother laugh, smile, or engage with us.
Yes, it is now becoming more and more rare to see Ethan’s personality through a lens — something else Hunter syndrome steals — his ability to talk, laugh, communicate.
We sat at a bench under the direction of J. We posed. My husband, Ethan, our toddler, and I all sat smiling at the camera. Ethan suddenly slapped his daddy’s face, then bit him as a someone walked past.
“Just keep snapping,” I called to J, as I moved the toddler farther away from Ethan’s blows.
The passerby suddenly stopped.
I rolled my eyes behind my dark shades, readying myself to defend my eldest son’s behavior or preparing myself for a lesson on “how to raise decent kids” (yes, I’ve been schooled many times by strangers on what I am doing wrong as a parent when it comes to Ethan).
The man smiled.
Ethan was currently kicking his legs out trying to kick anything that came close to him while screaming, roaring, and trying to bite his daddy.
“Would you like me to take a family picture?” He asked as he winked at the toddler.
I was so stunned. I didn’t respond.
Couldn’t he see and hear Ethan? I thought as I watched J show him how to work the camera.
“Okay, I got it!” He laughed as he stood back and started taking our picture.
Ethan was not calm. He was screeching and trying hard to kick my leg as I was sitting closest to him.
I began to laugh. What must we look like?! All of us smiling while Ethan is having a whopper of a meltdown. Yet, this man was happily taking pictures.
I did feel the need to explain a little to him as he handed me the camera back.
“Ah, sure, a family picture can be hard to get, even when there is no one melting down,” he smirked as we all thanked him for taking our picture.
He was right.
We only have a handful of the five of us together as Ethan can be very difficult to pose with for a photo. But having a child with special needs has taught me that perhaps our portraits don’t have to be Facebook perfect, that maybe we should just take more of them.
The man walked away whistling while Ethan began to regulate and calm himself down.
“What a nice man!” J exclaimed.
“Yes,” my husband and I agreed.
What a nice man, indeed.
There are two types of people in the world. Don’t be like the first two adults we met. Be like the kind stranger.