Recently Hubs, Bear, Monkey and I moved back to my hometown. After receiving Monkey’s diagnosis we just knew we needed more daily support.
It was the right move for us, but I do miss our home in the Midwest. I miss our friends and the location. But we’re back home and we have our high school and college friends back and family just on the other side of the door.
Tonight we decided to have an inaugural dinner with friends to celebrate our homecoming (and my belated birthday). I was excited. There was an energy in our kitchen as I prepared a home-cooked meal. There was a constant buzz in the air as we set up the table and chairs, made some orange iced tea, and readied ourselves.
Dinner was great, food was tasty and conversation was lusciously flowing. And then dinner and dessert were over and another group of friends joined us. Soon we traded the table and chairs for comfy couches and recliners. We mixed up and sat next to people we hadn’t seen in months. I kept checking on Bear and Monkey (who were graciously being babysat by Grandma and Granddad next door). I sat in this circle of friends and tried to take it in. I tried to feel the camaraderie that I once had with all of them. Sure, I laughed at the funny tales we had of old teachers, or the silly stunts that we all once took part in.
And then one friend said it. The R word. Retarded. Then he said it a second time and I told him that he better lose that word in this house. Then another friend said it.
My heart literally shattered. I looked at their faces differently than I once had. Hubs and I had been gone for 5 years. 5 years is a lifetime when you’ve been married, bought and sold 2 houses and had 2 children with special needs before your friends were even married (some still aren’t).
The R word is not tolerated in this house. My children have intellectual disabilities. They are legitimately, medically retarded. I will not let them live their daily lives pushing themselves as hard as they can to accomplish all they can just to have someone demean it. Using the word retarded to describe an action or someone else is making my children second class citizens. You are instantly writing them into the category of “less than good”. It makes them into invaluable members of society.
In the past 2 years my life has taken a drastically different turn. I became much more devoted to my faith and I gave birth to my first son. My first son, who happens to be intellectually and physically disabled. It forced me to focus on love and what my son is truly about. I can scream to the world about his milestones and I can cry into his shoulder because he pulled up to stand. I have a bond with him that lets me know when he’s hungry, thirsty or just needs snuggles because he has no ability to communicate with us. It’s forced me to slow down and try to stop time. We spent so much time in and out of hospitals that first year of Bear’s life that all time spent at home was sipped. I didn’t dare try to take to big of a drink for fear that it would make time go by too quickly.
And then Monkey joined us. With the same challenges as Bear. Thankfully, with Bear’s diagnosis in hand it saved us from a lot of hospital time with Monkey and he doesn’t have the same feeding challenges as Bear did. However, I still relish in everything about it. I trace every fat roll with my fingers and try to memorize them. I try to burn into my brain how he fits in my arm. I close my eyes and envision his big juicy cheeks jiggling in the carseat when he falls asleep. I try to forget how stiff his arms are, or how fisted his hands are or that he’s not yet rolling over or grabbing toys. I’m mentally recording his baby giggles and I wish I could bottle that sensation I get when his whole face lights up with his big baby grin.
I see others and I don’t see their shortcomings. I don’t care if the grocery store clerk is slow to check my items out. I don’t care if the waitress gets my order wrong. Maybe that’s the fast the clerk can go, or maybe it’s the first job s/he held. Maybe they have their own physical or mental challenges. Maybe the waitress had a bad day. Maybe her baby is home sick, or in daycare, or in the NICU and she’s just managing to keep it together. I’ve been there. I am there. Bear works so hard on a daily basis just to do what comes so naturally to others. I know he will never be as fast, as smart, or as physically skilled as a typical child. While it’s AMAZING to me that he’s pulling up to stand, most people just ask when he’s going to walk. They don’t see what he has accomplished, only what he is lacking. But who he is, is the best Bear he can be. And that is enough for me.
And this house, this house is retard free.