Ben’s the baby of the family, but don’t try calling him that.
Even with a limited vocabulary he still knows how to clap back. “BIG DUDE”
he’ll insist, referring to himself. Then the follow-up under his breath: “POO,”
-a curse word ‘round these parts - which we usually humor with a dramatic gasp.
He loves it. Of course, the effect is more impactful if everyone in the room
stops what they’re doing to be collectively offended.
Having someone with Down syndrome in your life is like having stepped through an interdimensional gateway. Things are different here. Before I arrived, I was aware that people with special needs were “out there” but they were probably being cared for by someone infinitely more benevolent than myself -- like angels or something, the kind with fluffy wings and halos. They lived in a separate place that I could only imagine. I always just thought, “Good for them!”
But now everything has shifted. I’ve been allowed to
crossover into this dimension. Ben’s dimension.
In this separate place the world is brimming with hurt,
healing, and more purpose than I know how to handle. I didn’t know I could feel
this much and I didn’t know there were so many people who needed me - who I also needed. Benjamin was my family’s
little “interdimensional gateway,” and since we stepped through things have
never been the same.
When Ben gets up in the morning he's a zombie, which makes getting him ready for school an adventure for my mom. He'll fall asleep while eating breakfast or flop back in bed right before the bus arrives. (Lots of fun. My mom loves that...) Yesterday, three and a half minutes before the bus was going to pull up my mom was running around the house calling his name and panicking. That's never a good thing to hear with little siblings. I jumped out of bed and flew down the stairs to ask if she’d found him. He was downstairs in our basement, showing our pet snake his homework. My dad is a science teacher. We like weird pets. Ben had his little "Letter S" print off from the day before up against the glass. "SNAKE," he instructed. Now when we don't know where he is, we check the basement.
One time someone told my mom aborting a child because they
had Down syndrome was totally justified. Ben just happened to be sitting there
on her lap at the moment. I was floored. I had never been so baffled.
Instinctively, I needed to get my brother as far away from that person as
possible. Mom cried. I cried. We drove to a park and Ben scratched away with
chalk on the Buffalo city sidewalk next to my siblings.
“He’s ours. Ben is ours.” I told mom, because seeing her cry is never a good thing. “He could have been someone else’s, someone who wouldn’t want him. But he’s all ours. We get to love him.” She hugged me.
Ben is small but his world -- this dimension we’ve found
ourselves in -- is growing.
To say that people with special needs don’t deserve a shot at life is to say that Ben has no value. And nothing could be further from the truth. Not only do we need to protect people like Ben, but we need to celebrate every moment they’re here with us.
Mom and Dad told us when he was born that things were going
to be... different. How different? None of us knew.
We were scared. Mom cried -- and like I said, when mom cries it’s weird. The apocalypse could be
vacuuming the final vestiges of habitability from the planet and my mom would
be sitting there in the fruit cellar handing out freeze-dried ice cream and
canned beans while maintaining some semblance of “cool” and assuring everyone
that it was gonna be okay.
It might as well have been the apocalypse with how we
carried on.
How long would he live? Would he be... happy? We googled furiously for answers, as if an extra chromosome
could possibly affect how much love we were willing to offer. We were
experiencing the shift – taking those first few steps into Ben’s dimension.
Now, on the other side, we’ve emerged with a better understanding of what it means to love.
I call it empathy but my sister calls it Down syndrome
radar…. (It actively takes every cell in her being not to pounce on special
needs classmates and cover them in hugs and kisses.) Our compassion vocabulary
is expanding rapidly. And there’s a mischievous wink we get to share with
special needs families. “You’ve made it
here too, huh? Good news, we understand you! And guess what? We’re here for
you.”
And it doesn’t stop there. Our world is bigger. There is a
burden for those who hurt, for those who cannot speak for themselves. We
wouldn’t give that up for anything.
We are privileged. We are so very privileged.
Not everyone has the chance to step through this little gateway. In fact, most actively deny that journey. They slam
the portal shut and lock it tight. They tell people like Ben that since there’s
a chance what he has to offer isn’t “good enough,” they won’t have any part of
it.
“You won’t have a
quality life. You’re going to be different. We’re probably both going to
suffer, so let’s just not."
Pre-birth screenings are the reason that most Down syndrome
children will never have the chance to take their mothers by the hand and guide
them through that gateway. Our capacity
to show others unconditional love is being traded for a false sense of emotional
safety. Does showing compassion hurt? Hell yes. In fact, I think now that I’m
living in this other “dimension,” where special needs kids are no longer
invisible, life aches more. That ache is what drives me to love them harder.
They need it. They want it. And they deserve it.
I get to witness their potential firsthand -- through Ben.
And sometimes I see that potential snuffed out. And it hurts, but I have
purpose now - learning how to love deeper.
This world needs to heal. But who will heal us and who will teach
us how to heal others if we are eliminating every opportunity to step outside
of our comfort zones? We don’t need more locks on our interdimensional gates.
We need more Bens to let us know that we are strong enough to give our time and
our blood and guts to those who desperately need unconditional love.
One last story… Ben went through a phase where he would, well, randomly kiss things when he was in a good mood. We’re still trying to figure out where this came from. I guess if he got comfortable enough with his environment some rogue synapse in his little head would fire more rapidly than usual and induce a desire to show affection by giving whoever (or whatever) was closest, a peck. It was actually really cute. But we found out this habit wasn’t limited to just kisses on the face -- the target had to be eye level for him. At 8, he’s a bit short for his age, around 3 and a half feet tall.
So one day we were out shopping and Ben was walking alongside mom, helping out because he’s a big boy. Suddenly, he started to pucker up. The nearest target: a complete stranger’s... um, posterior. He was gentle and brief, like powdering a macaroon. Mom would have been mortified if the unassuming victim of Ben’s affections hadn’t seen the humor in the situation. I’d like to say we learned a lesson that day, or that we taught Ben something, but we figured it was best to just leave it alone. There’s not really any use in telling someone that they’re showing too much love.
I’ve found that is something that rings true in both dimensions.
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Post by Jake Romano
