Loxly

Archive for March 2011

I’m standing in a bar in Brooklyn, listening to a band I have traveled across the country more than once to see, near the 5th anniversary of one of my sons passing. The lead singer looks into the crowd and says “Don’t be afraid of the Happy Dancing, everyone can be Happy Dancing.”

She then went on to continue to sing the next song and the “happy dancers” were stomping and jumping and body slamming each other. They were inspired by the same woman that inspired me a few years ago.

In late June 2007 – a wonderful man sent me the link to a video of the opening act for Joan Jett, playing on the Hudson River in NYC – he left a message in IM before he left for the show because I had a bad day, I had fired someone – said “because your awesome” – linked to YouTube video of “Because I’m Awesome”.

People tell me I’m an inspiration to them, I’ve been told that for about 30 years. It was 30 years ago that I was told that my sons had a genetic condition that would mean they would never stand or walk and that their life span was teens to early 20s.

One, a writer that inspired everyone around him to be better than they were, encouraged me to write and follow my passion – photography and the dream to have a gallery someday – I have an online gallery, but it’s a gallery. I stopped writing because he was the brilliant writer, not me.

The older one that inspired everyone around him because no matter what he lived his life the best he could, rarely complaining about the constant pain he had to be in, his acceptance of people as they were and the drive he had to be an actor. He was an actor online, playing role playing games featuring medieval characters that he created, with animal roles that were incredibly detailed and making friends around the world.

I have a confession to make, I don’t inspire anything. It’s my children that inspired me. The boys for their living life the best they could, their sister for being there for me and for them. My children were my reason for living, my anchor, my inspiration. When the boys died, it took away my reason for being. Liz and my grandson are very important, but it wasn’t the same, they didn’t rely on me for their life to go on. They had their family. Dan and Chris relied on me for pretty much everything. To get up in the morning, to go to bed at night. There were other people around that helped, Liz, their Dad (we were divorced), their cousins, their girlfriends. But it was my perceived job to be sure they were always ok, there was someone there if I wasn’t. I lived with Dan in a dorm room at NYU on Washington Square for the 10 months after 9/11. When he died in a car accident, his brother immediately rejoined me in NYC (he had been with his dad for a couple of months) and we moved into a ground floor apartment in Astoria for a year.

I got credit from people for being a strong woman that raised them right, that allowed them to be as much as they could be. We were an active family in the community, raising funds for research, attending events and Liz talking about living with disabled siblings, about the boys being in school mainstreamed with the other kids. Both my sons dropped out of high school in 10th grade. Why force them to live their short lives dictated by the rules of a bureaucracy? They both went to college, by their choice, not dictated by society. They inspired by example.

Dan was online meeting people virtually around the world and didn’t tell them he was 16 or 17, didn’t tell them he was in a wheelchair, didn’t tell them anything, just showed him his personality and his work and his words. Chris was online meeting people, creating worlds to live in where there were no wheelchairs or restraints. He was in the college plays, they made sure the plays they choose had roles for him.

They both started going to live events and meeting the people they only knew online, they had to start admitting their ages and their restrictions. By then no one cared. Because they knew the people that they were. I was just the able bodied person that got them where they needed to be.

In a bar in Brooklyn on a cold March night, a beautiful blonde angel made me realize what was missing, why even though my life is good now, it still wasn’t “right”. Missing Chris and Dan so much, unable to do the things I wanted to do, something stopping me. When Kelly sings, she inspires people to react. To have fun. To Happy Dance. Good musicians do that, good writers do that, good actors do that. Kelly does it, Dan and Chris did it. Without them to inspire me I’ve been floating, working without purpose, just doing the jobs I was good at, helping people along the way. Kelly showed me that persistence pays off, you do what you really love to do and it will inspire people.

I needed to realize that in order to be able to fully realize that it’s time for me to go out there in my way and inspire people. Stop letting barriers be in the way. For 34 years my children were my life. I love the work that I do, but things are top-heavy or something. I need to keep doing what I do, for the people that rely on me, but I need to also reach into doing what I need to do for me. That sounds corny, but it’s true. I have tried several times to make myself write. People tell me they are inspired by my stories, but I just tell them, I don’t write them.

I have a thousand stories, I just have to figure out where to start. I think it might start on a cold March night, in a bar in Brooklyn, where 11 years ago I could have never imagined being, with a wonderful man by my side and an angel singing that touched my heart, and in that moment I understood.

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  • maisoto56348: I really liked King Hereafter, where the sparse saga style suited the characters and the setting. It’s one of my favourite books. Click
  • Jan: Deborah; You already have your wings, now you just need to fly. I am humbled. You gave your boys life--and they continue to live through you. Just a
  • Peggy: Deb, you make me smile and cry at the same time. ((hugs))