Eradicate The R-Word

I spend an inordinate amount of time examining my own navel, and worrying away about problems that would seem like minor bumps in the road to some people.

Friday I felt quite blue, as I realized with some finality that we are heading into an unknown future with multiple, moving variables. I felt sorry for myself.

Then, I read something on a local blog written by a women who comes here often and supports me when I am feeling low.

The woman’s name is Amy, and she has a beautiful daughter, Larkin. Larkin has Down’s Syndrome, and a number of other life-threatening conditions that would bring me to my knees, were Larkin my child.

But Amy … Amy has a core made of steel. She is as sleek and beautiful as an expensive automobile, with a quick, flashing smile bright as diamonds. Her humor is swift and devastating. I don’t know Larkin, we haven’t had the pleasure of meeting yet. But I imagine that when we do, I will be as taken with her as I am with her mom.

Amy is on a mission. She wants to eradicate the R-word. I asked her last week if she would let me re-print a post she wrote on the subject last week, and she graciously agreed. Please, read this, and do what you can.

Spread the word, will you? Or rather, erase the word. And let’s remind President Obama that careless remarks hurt real people, people like Amy and Larkin. And if there are two people in this world who deserve to be sheltered from hateful words, these are those people.

Words are power. We use them carelessly. We throw “hate” and “love” and other weighty words into the air and sometimes, they hit an unintended target. Please, be mindful.

Thank you, Amy, for taking me outside myself.

***

Re-posted with permission, from Larkin’s Place:

March 31, 2009 is just another day for most people. For those of us who love someone with a cognitive disability, it is a benchmark. A line is being drawn in the sand and an army is being amassed to turn that line into a trench. A boundary if you will and it is a boundary that in our family and life is not to be crossed. We will not tolerate it.

On March 31, 2009 the Special Olympics is asking everyone to join us, plant your feet, and grab our hands and a shovel to dig the trench with us.

After Larkin was born, I was tolerant and nice about those who chose to use the R word as an insult. I would be quiet and figure that maybe by my silence they would figure out the offense. Sometimes I would point it out. Andy on the other hand is very much in your face and I have cringed at times when he lets someone know. Andy is quiet, reserved, and prefers one-to-one conversation versus a crowd or party so it is amazing to watch him explode sometimes.

Please do not respond to us that you “don’t mean it like that” because frankly there is no other way to mean the word when you use it to describe something you consider of less value or to insult. Do not add more insult to injury.

I will tell you a little story of how my position on the R word morphed when Larkin was diagnosed with seizures in March of 2006. Infantile Spasms came first when she was only 5 months old.

Larkin was admitted into Carle for observation and for me to learn how to give her injections 2 times daily. Andy was in and out of the hospital visiting us and I had a lot of time to think. When I am trying to absorb medical issues, I get very quiet but I never back away from the hard stuff. It is my role as her mother, advocate, and wife. Andy is good at many things and I rely on him a great deal but it is always my job to absorb, plan, implement, and relay all of this to him. We are a team and this is my part.

Late into the night, sleeping in a bed next to her crib I knew there was a question I had to verbalize. I did not want to hear the answer. Nevertheless, I had to ask. At 6:30 in the morning Doctor Kennedy, a pediatric neurologist at Carle, showed up at our bedside. Larkin was in my arms sleeping and I was curled up spooning with my baby. My sweet, innocent, beautiful, loved, little girl.

“Will she be more delayed because of this?” I asked. “Yes, most likely” she said back ever so gently, with a nod of her head.

6:30 a.m. is not the same anymore.

Neither is 1:47 p.m. when we heard “Larkin has Trisomy 21” (Down symdrome) October 2005

Or 4:16 p.m. when I heard “It looks like Lennox-Gastuat” and my reply of “that’s a death sentence”  August of 2007

Life changed drastically at each of those times by the word Retardation. Retarded. We quit breathing, blood pressure changed, and our little girl labeled. Therefore, you see – I will never tolerate you using my sweet, innocent, beautiful, loved, little girl’s diagnosis, and life challenge, as an insult.

There was a time when parents welcomed the R word, because 40 years ago it gave their children a diagnosis beyond, idiot, stupid, and moron. Today we use the term delay and while it does not take the hurt completely away, it helps it to not sting quite as much.

We love our girl. We love her friends, peer group, those who we have met along the journey.

We respect all those who daily fight the challenge of fitting into a world where they are often rejected and ridiculed.

Our children are not able to fight back. They only know how to laugh, love, and respect you. Do they not at the very LEAST deserve that back?

I invite you to the line. I invite you to hold my hand. I invite you to dig the trench with me. I hope you join us on March 31, 2009 as we Spread the Word – To End The Word