{"id":164565,"date":"2017-03-31T14:52:44","date_gmt":"2017-03-31T18:52:44","guid":{"rendered":"\/news\/?p=164565"},"modified":"2017-03-31T17:48:32","modified_gmt":"2017-03-31T21:48:32","slug":"brother-of-boy-with-down-syndrome-our-world-is-bigger-because-of-ben","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/brother-of-boy-with-down-syndrome-our-world-is-bigger-because-of-ben\/","title":{"rendered":"Brother of boy with Down syndrome: ‘Our world is bigger’ because of Ben"},"content":{"rendered":"
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(New Wave Feminists<\/a>) Ben\u2019s the baby of the family, but don\u2019t try calling him that. Even with a limited vocabulary he still knows how to clap back. \u201cBIG DUDE\u201d he\u2019ll insist, referring to himself. Then the follow-up under his breath: \u201cPOO,\u201d -a curse word \u2018round 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\u2019re doing to be collectively offended.<\/p>\n

Having someone with Down syndrome in your life is like having stepped through an interdimensional gateway. Things are different here. Before I arrived, I\u00a0was<\/em>\u00a0aware that people with special needs were \u201cout there\u201d 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, \u201cGood for them!\u201d<\/p>\n

But now everything has shifted. I\u2019ve been allowed to\u00a0crossover\u00a0into this dimension. Ben\u2019s dimension.<\/p>\n<\/div>\n

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In this separate\u00a0place\u00a0the world is brimming with hurt, healing, and more purpose than I know how to handle. I didn\u2019t know I could feel this much and I didn\u2019t know there were so many people who needed me – who\u00a0I<\/em>\u00a0also needed. Benjamin was my family\u2019s little \u201cinterdimensional gateway,\u201d and since we stepped through things have never been the same.<\/p>\n

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\u2019d 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.<\/p>\n

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.<\/p>\n

\u201cHe\u2019s ours. Ben is ours.<\/em>\u201d I told\u00a0mom,\u00a0because seeing her cry is never a good thing. \u201cHe could have been someone else\u2019s, someone who wouldn\u2019t want him. But he\u2019s all ours. We get to love him.<\/em>\u201d She hugged me.<\/p>\n

Ben is small but his world — this dimension we\u2019ve found ourselves in — is growing.<\/p>\n

To say that people with special needs don\u2019t 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\u2019re here with us.<\/p>\n<\/div>\n

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via DontScreenUsOut.org<\/p><\/div>\n<\/div>\n

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Mom and Dad told us when he was born that things were going to be… different. How different? None of us knew.<\/div>\n
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We were scared. Mom cried — and like I said, when mom cries\u00a0it\u2019s weird<\/em>. 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 \u201ccool\u201d and assuring everyone that it was gonna be okay.<\/p>\n

It might as well have been the apocalypse with how we carried on.<\/p>\n

How long would he live? Would he be…\u00a0happy?<\/em>\u00a0We googled furiously for\u00a0answers,\u00a0as if an extra chromosome could possibly affect how much love we were willing to offer. We were experiencing the shift \u2013 taking those first few steps into Ben\u2019s dimension.<\/p>\n

Now, on the other side, we\u2019ve emerged with a better understanding of what it means to love.<\/p>\n

I call it empathy but my sister calls it Down syndrome radar\u2026. (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\u2019s a mischievous wink we get to share with special needs families.\u00a0\u201cYou\u2019ve made it here too, huh? Good news, we understand you! And guess what? We\u2019re here for you.\u201d<\/em><\/p>\n

And it doesn\u2019t stop there. Our world is bigger. There is a burden for those who hurt, for those who cannot speak for themselves. We wouldn\u2019t give that up for anything.<\/p>\n

We are privileged.\u00a0We are so very privileged.<\/strong><\/em>\u00a0Not everyone has the chance to step through this little gateway. In fact, most\u00a0actively<\/em>\u00a0deny that journey. They slam the portal shut and lock it tight. They tell people like Ben that since there\u2019s a chance what he has to offer isn\u2019t \u201cgood enough,\u201d they won\u2019t have any part of it.<\/p>\n

\u201cYou won\u2019t have a quality life. You\u2019re going to be different. We\u2019re probably both going to suffer, so let\u2019s just not.”<\/em><\/p>\n

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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.\u00a0<\/em>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\u2019m living in this other \u201cdimension,\u201d 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.<\/p>\n

I get to witness their potential firsthand — through Ben. And sometimes I see that potential snuffed out. And it hurts, but I have\u00a0purpose\u00a0now – learning how to love deeper.<\/p>\n

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\u2019t 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.<\/p>\n

One last story\u2026 Ben went through a phase where he would, well, randomly kiss things when he was in a good mood. We\u2019re 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\u00a0closest,\u00a0a\u00a0peck. It was actually really cute. But we found out this habit wasn\u2019t limited to just kisses on the face — the target had to be eye level for him. At 8, he\u2019s a bit short for his age, around 3 and a half feet tall.<\/p>\n

\"\"So one day we were out shopping and Ben was walking alongside mom, helping out because he\u2019s a big boy. Suddenly, he started to pucker up. The nearest target: a complete stranger\u2019s… um, posterior. He was gentle and brief, like powdering a macaroon. Mom would have been mortified if the unassuming victim of Ben\u2019s affections hadn\u2019t seen the humor in the situation. I\u2019d 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\u2019s not really any use in telling someone that they\u2019re showing too much love.<\/p>\n

I\u2019ve found that is something that rings true in both dimensions.<\/p>\n<\/div>\n

Editor’s Note:\u00a0This story, which originally appeared at New Wave Feminists<\/a> on March 29, 2017, was reprinted with permission.\u00a0<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

(New Wave Feminists) Ben\u2019s the baby of the family, but don\u2019t try calling him that. Even with a limited vocabulary he still knows how to clap back. \u201cBIG DUDE\u201d he\u2019ll insist, referring to himself. Then the follow-up under his breath: \u201cPOO,\u201d -a curse word \u2018round these parts – which we usually humor with a dramatic […]<\/p>\n","protected":false},"author":499,"featured_media":164577,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[9455],"tags":[],"yoast_head":"\nBrother of boy with Down syndrome: 'Our world is bigger' because of Ben<\/title>\n<meta name=\"description\" content=\"Having someone with Down syndrome in your life is like having stepped through an interdimensional gateway. 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