It seems that living with Koan is a full contact sport… About a week and a half ago, Koan fell out of bed again. I wish I could say this was the first time this happened to him, but sadly, he’s done this four times since January. The upside is that he’s getting more mobile. The downside is that he’s not learned to put his hands out to break his fall. Each time this has happened, he’s ended up with terrible looking contusions on his face — usually around an eye. He looks just awful — just like a badly beaten prize fighter. We have tried various things to keep him in bed, foam padding, strategically placed pillows, etc… But, like so many things with him, we are still trying to figure this out.
Last Wednesday, I went into his room in the morning get him dressed for the day. Koan loves to stick out his tongue — particularly when he’s happy. As happens on most mornings, he was thrilled to see me — big smile, laughs, and sticking out his tongue. I noticed that he had a large, ugly looking bruise over most of the right side of his tongue, however. He apparently bit his tongue over night. Much like his facial sores, this didn’t seem to bother him, too much. We got him a lot of ice cream that day — which, of course, he thought was great. We spent most of that day worrying that he’d had a seizure in the night.
On Thursday, Jeri was picking Koan up (not an easy task anymore at 70 pounds) to take him to the car. Tiber, my oldest son, had forgotten his wallet and need it for driver’s ed. On her way out to the van with Koan in hand, he swiped at her face because he was so excited. Koan loves to go anywhere. And, when he’s excited throws his hands up. This particular blow caught Jeri squarely in the eye — leaving a nasty scratch on her cornea — requiring a trip to immediate care. To her credit, she managed to graceful get Koan to the ground without dropping him.
Just last night, I was getting Koan ready for his bath. Our typical routine is for me to change his briefs on our bed and lift him into the tub in master bath. Koan LOVES baths! So while I was getting him cleaned up, he kicked out in excitement. I had his left foot held up in my left hand. I was using my right hand to wipe him. His right foot came free and his heel caught me square between the eyes. The blow knocked the glasses across the room (luckily not breaking them) and give me a minor bloody nose.
Aside from the string of bad luck, this was all pretty minor stuff –Temporary pain. Some of it might even make for a good story or two that will be fun to recall later. This contrasted with another experience I had last Friday. I was invited to join the University of Iowa’s Center for Disabilities and Development community involvement panel. The CDD is a really cool resource. We used their services quite a bit when Koan was much younger. They provided tons of testing and expertise. I was honored when I was asked to serve on this panel.
I attended my first meeting last Friday. It was a fascinating group — about half of the team were employees of the CDD and the other half were caregivers for people with disabilities or people with disabilities. It was a really rich and vibrant experience. And, while there were a lot of really cool and interesting ideas discussed, there was one impression that really left another type of mark on me. In the meeting, each person was given the opportunity to share a bit about why they are participating with this group. There were so many empowering and affirming stories! But, there were also several anecdotes shared that made me profoundly sad. Three of the disabled members of the panel shared difficult stories with one common theme — recently people (adults) had denigrated, belittled, or called attention to (very inappropriately) their disability. One of them even made a point to say that adults had been much more mean-spirited than children — staring, laughing, and mocking/parroting — sadly this type of behavior was modeled by our current President during last year’s campaign.
All of the outward bumps and bruises Jeri, Koan, and I got this week will heal. But, I’ve spent a lot of time thinking this weekend about how much more difficult it is to recover from the psychological wounds. My guess is that this type of damage takes a lot longer to heal…