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 drawn in the sand, and an army amassed to turn that line into a trench. A boundary if you will, a border 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 sociable 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 impressive 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 about 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 three months old.
Larkin was admitted into Carle for observation and for me to learn how to give her injections two 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 reticent, 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. I was curled up, spooning with my sleeping 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 syndrome) October 2005
Or 4:16 p.m. when I heard “It looks like Lennox-Gastaut” 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 challenges, 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 entirely away, it helps it not to 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.