Erik Weiner

@erik-weiner | contributor
Erik Weiner is a father to two beautiful little girls, Kendall, who is 6 and Devan, who is 2. He’s husband to Kelly. Devan was diagnosed at birth with Down Syndrome and born with TOF and AVC heart defect and had a full repair at 3 months old. The road his family travels is a journey, but with the love and support of their friends and family, the rewards are so much sweeter.
Erik Weiner

He Was Called 'the Ret--d of the Family.' Then I Learned the Real Story.

My first introduction to the disability world was my dad’s cousin Joey. The “retard of the family,” as I remember my grandmother saying. Cousin Joey was the only son of Aunt Loranne and Uncle Andy. They were told to institutionalize him when he was born. At that time, this was the “pretty good option” many families took. But my dad’s aunt refused. They took Joey home. To raise him like any other child. I remember as a kid how much of a production it was prepping my grandmother’s house for a visit from them. Good stuff was put away. Valuables were locked in a room. They told me Joey had no self control and would break everything. I even had to hide my candy, which really didn’t make sense to me. He was in his late early 30s at this time, but Joey, as I was told, would eat everything. He was big, he was unpredictable and I was scared sh*tless every time he came over. When I knew him, he was nonverbal. He’d grunt and point. Scream and hit his head. He’d sit in the most pretzel-like positions. I heard, “but he always seems happy” and “God gives special children to special people” tossed around a lot. As I got older, Joey didn’t come around so much. Until he became… forgettable. Around the time I got married, I learned Joey had died. He had to be somewhere in his late 50s. He choked to death. He’d broken into one of the locked drawers and shoved food down his throat. And that was that. He became forgotten again… Until my daughter Devan was born and we received the diagnosis of Down syndrome. And I started to remember. And I started to ask questions. Through the wonders of Google and other search engines, I found Joey, the “retard of the family,” had lived a pretty good life. He excelled at the place he worked. He earned awards and achievements. He was loved. He was a son. And a friend. And I’m embarrassed that I never really knew him. For me, the forgotten had become the remembered. Because I see Joey every day in the face of my little girl. I started to remember when he’d smile at me or play ball with my dad and me. And I’ll choose to forget the stereotypes and prejudice I held on to for so long. My introduction to the world of disability may not have been sunshine and unicorns. But I’ll make damn sure those who meet our family know the stereotypes and perceptions they may have about those with a “retard of the family” are far from true. Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

Erik Weiner

My Daughter With Down Syndrome Has Made Me a Fighter

Dear Down Syndrome, There is a secret I must share with you. You make me want to fight. You make me want to break down barriers and go through walls. You and I, we have what I like to call a love/hate relationship. There are days when we go out as a family that I lie in wait because of you. I am on guard for those who give you the extra glance, the long stare, the pity smile. I stand ready to pounce on those who would point, laugh and call you that horrible word. And yet, those fears of what may happen never come. So I box it away and hope it stays there for our next family outing. Now, let’s talk about the real fight. The one for which I am always happy to put on those gloves. It’s the advocacy, the awareness and the love. It’s that crooked smile my daughter gives me and the way those almond-shaped eyes sparkle when we play peek-a-boo. It’s the buddy walks with family and friends. The sharing of milestones and hopes of the future. Yes, Down Syndrome, my secret is out: I have become a fighter. My trunks are yellow and blue. And know that, like the ones who have come before and those who will come after, we are not fighting against you. But round after round, it’s give and it’s take. You gave us an unbelievable gift. But it’s what we take from that will ultimately decide the winner on the final score card. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

Erik Weiner

Parents Share Daughter's Newest Diagnosis With Friends

The power of friendship cannot be measured on any scale. It’s something that you learn at a young age. And throughout your life, those friends may come and go, but all will leave a lasting impression on you. When our daughter, Devan, was born we soon were told she has Down syndrome. She also was born with a heart defect that would need surgery at some point early in her life. On Black Friday 2012, had her heart repaired. The outpouring of love and prayers and concern of friends near and far helped us over the two weeks she was at the hospital. One week into our stay, when I needed to leave my family and head back home to work, someone offered me a home cooked meal. At first I declined. Too tired to be happy. Exhausted from concern. As I drove closer to home, I gave it a second thought and asked if was still OK to swing by. The offer still stood, and off I went. When I arrived I was met with hugs and kisses and the promised home cooked meal. It was one of the best I’ve ever had. As the meal ended, I was given an envelope with a check in it. A small token of love from a family member of theirs who heard what we were facing. A debt we could never repay. A new friendship was born over kindness. When released from the hospital, we returned home where Devan’s older sister was eager to decorate the Christmas tree. Friends sent handmade hearts from all over, and they soon decorated our tree. That Christmas was spent reflecting on what we had and what was to come. We found love and support from the Down syndrome community. Made new friends. Became close to one who has a son close to Devan’s age and has Down Syndrome. He’s our future son-in-law. The apple of Devan’s eye and one of her biggest supporters as she navigates this journey. Life goes on, and now two years into this, we still would not be where we are without the love and support of our friends. We’re now facing another diagnosis. One we didn’t expect or see coming. Infantile spasms. Epilepsy. We’re currently wading through the feelings and emotions we felt upon hearing the words “Down syndrome.” Most of our friends don’t know yet. It’s too new for us. But it’s time. It’s time to come out of the dark rabbit hole and into the light. They will learn upon reading this. We’re thankful for each and everyone of them. For the kind gestures, love and support. For being who they are. Our friends. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .