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A Glimpse Into the Future

The past two nights I have been able to get a glimpse into my son’s future. I’ve had the privilege of being a speech coach for self-advocates in Best Buddies’ Ambassador program. To work with these young men and women with intellectual and developmental disabilities as they crafted their own mission statement was — in a word — awesome. I got to bear witness as they proclaimed to the world who they are. Individuals. Young men and women who are capable, valued, worthy. Wanting what we all want. Connection and acceptance. Every single person on that Zoom call saw these young men and women as they saw themselves — capable, valued, worthy. I loved being a part of it, this glimpse into my son’s future.

I have such big dreams for Ian. To be honest, he has big dreams for himself. But, if I am also being honest, I sometimes wonder if they will come true. Mostly because I realize that his dreams rely upon someone else. They rely on someone else to see him as capable, as valued, as worthy. Whether his dreams come true has less to do with his ability and more to do with what others seen in him.

Oftentimes that label is the only thing that limits him — Down syndrome. Assumptions. Low expectations. Stereotypes. Can you imagine that? That you have very little control over what you’re able to do in your life if the right people don’t see the same in you? I do think our eyes have been more opened to that lately. People being judged on the one thing they cannot control, the one thing they cannot change. Knowing that others may not see you for who you are, just who they think you are.

So here I am, sitting on my deck as the sun sets and dusk settles like a cool blanket over the warm day. Twinkle lights around me. Candles burning, keeping mosquitos away and, at the same time, finding warmth in the flickering flame. The flame that bends and twists in the wind but fights hard against being snuffed out. Pushing back against the wind, the one thing it cannot control. Like our Ian. Shining his light against the wind, bobbing and weaving. Pushing back so others see his light. So they see him. Capable, valued, worthy.

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Pain.

One year ago. These two. Getting ready for their big dance recital. And here we are, separated by a danger I cannot hold in my hands, but is as real as anything I’ve ever known.

There’s deep pain during this time. Seeping into tight spaces, pushing them wide apart. Creating a chasm that allows pain to flow freely, unencumbered. Pain, it seems, is in abundance. Its only salve elusive. Togetherness. The one thing we can’t have… the one thing we don’t have right now.

One day.

I miss connection. I miss hugs. I miss the joy I cannot hold in my hands, but is as real as anything I’ve ever known. Just look at these two.

One day.

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My Story: The Light

We’ve all had them. That tiny sliver of time when your life changes forever. That time where everything stands still and there is silence, even if it is noisy. It’s kind of like a nothingness as your brain tries to process the news. And when it does, the enormity comes crashing down. For me, that moment came just minutes after I gave birth to our second son. For the rest of my days, I will remember that moment with perfect clarity. A bunch of people murmuring around my brand-new baby as he lay on the warming table. No words of congratulations. Just whispers. My husband would eventually emerge from that group of people, his face telling the truth that he could not tell me in words. I cried out my plea, “Will someone please tell me what is going on?” And finally, someone did. They rocked my world with two little words. Down syndrome.

In those early hours, days and weeks after hearing those two words, all I did was beg for someone, anyone, to tell me that it was going to be ok. For hours in the middle of the night, I would google “Down syndrome” and read every single thing that popped up, page after page after page, seeking something I would never find there. All I saw was the hard and the unknown. And the only possibilities I saw were the scary ones. All of this made worse by the fact that this was nearly a decade ago, long before the time of social media where you could see what life is actually like for people who love someone with Down syndrome. All I had was a Wikipedia article telling me my son would have “mental retardation.”

But as those early days gave way to weeks, our baby began to unfold himself to us, to show us who he was. Our Ian. And while those Google searches in the middle of the night told me about the hard, the unknown and the scary, they could never tell me about the greatest truth – his light. What they don’t tell you is that you would move mountains for this kid. That the hard is not as hard as you think it will be because you LOVE this kid. That the hard makes you appreciate everything else. That the hard makes you appreciate the gift of the ordinary day. That this kid will make you appreciate the gift of the ordinary day. And that he will make the ordinary extraordinary because of who he is. That so much in life you thought was so very important doesn’t even matter. That he will be the answer to every big question you ever had about the universe. That you will wonder how you ever lived without his light.

Our son has this light that draws you to him. He has the power to bring joy, to give perspective, to heal. That Wikipedia article had it all wrong. None of us is the sum of our struggles. None of us. We are the sum of what we do to overcome them. How we connect and uplift. How we support and hold on and love. How we make something from the struggle, from the dark. How we find the light.

Times of darkness only set the stage for the light. And when it is really dark, the coming of the light is redemptive. It reminds you to be grateful, to be kind. To lift someone else up. To give a hand or a shoulder or a hug. To be good. And all of that stuff, all of that good? Our Ian already knows that because of who he is. He makes you better. He makes you want to be better. He already knows the secret to life. Enjoy each day, be grateful, work hard, love without limits and live big.

And the biggest lesson of all? Our Ian is who he is not because of Down syndrome. He is not the stereotype that “people with Down syndrome are always happy.” (Because, well, who is?) To attribute the way Ian lives his life to a stereotype would take away from him, take away from who he is. He is not a stereotype. He is Ian.

He lives his life out loud and shines his big, beautiful light. Blessed are those of us who are able to bask in it. And for all my searching for reassurance that it was going to be ok? It is not ok. It is better than ok. It is great; it is wonderful; it is life-affirming. Life is better with Ian. Life is better because of Ian. I never had a baby with Down syndrome. I had Ian.

Originally published at: https://makeyourmarkfords.blogspot.com/2018/10/the-light-guest-post-by-laura-feiler.html