When I was in the hospital, there was a man whose 15-year old son came to visit him. The boy had down syndrome and I was introduced to him and the man’s wife and other family members as they all sat in the TV room. The boy said hello to me when prompted, then sat quietly between his dad and mom, content to just visit calmly, his dad’s arm around him, his eyes taking in the different things in the room. I made a small bit of conversation and then left them to be by themselves.
The next day Andy brought Jonah up to visit me. I hadn’t seen my boy in a week and I missed him terribly. Part of me knew the visit would likely be stressful for Jonah, but another part of me longed for the same kind of visit I’d seen with the boy the day before. When they arrived, I smiled brightly and said “hi, boo!” but Jonah just looked confused, turning back to his dad. “Home?” he asked. I lured Jonah into another recreation/group room (where most of the unit was gathered) by offering him a soda I had in there. He went right for the soda, took a sip, put it back down, and walked back out of the room before anyone could really even talk to him or say hello. I know the experience was overwhelming for him and I knew intellectually not to take it personally, but then Jonah cried for “car ride” and “home” increasingly, until even though he’d only been there for 5 minutes or so, Andy said it was time to go. I wanted to hug and kiss Jonah goodbye but he started to attack Andy. Andy quickly handed me his visitor’s pass and pushed the door open. I watched from the window in the door as Andy struggled with Jonah. They swung around in the cold on the path to the parking lot and I broke down, sobbing at the door, watching them until they disappeared from sight.
The next day I was talking to the father of the boy with down syndrome, and I guiltily admitted to him that I was jealous – that I wish Jonah was like his boy. “Why?” he asked me. “Two reasons,” I answered. “Down syndrome is an immediately identifiable disability, (whereas Jonah looks ‘normal’) so people are more likely to be compassionate when encountering him, and also because he is so sweet and good-natured, attending a regular school and doing well, learning as best he can, operating in a world that’s got down syndrome pretty much figured out, that knows what it is and what to do about it.” The man nodded and smiled. “He’s my buddy,” he said.
I miss that man, and everyone else in my unit at the hospital, terribly. We were a group of people for whom it was unnecessary to explain anything but the details. The underlying suffering was universal – we all felt it and we all shared it and it was the foundation of everything for us. It was easy to connect, to feel close to one another. One of the rules on the unit was that we were not allowed to touch one another, but we snuck hugs and cuddled into one another whenever we could get away with it, like a very functional family in a very dysfunctional world.
I thought the hospital would “fix” me – that on new meds and armed with new coping skills, I would do lots better – but I find myself wishing I could crawl back to the hospital with all those same people where we all understood one another. The outside world doesn’t have the same dynamic – people don’t understand the tracks of my tears or why I can barely breathe – and I have no right to expect them to.
Jonah was so good for a few days over vacation that I was once again tricked into thinking maybe we don’t have to place him – that maybe we can manage him okay. By we I mean Andy, mostly, for I am not at home anymore and though I try my best to see him and assist as best I can, I usually end up cleaning up the messes left behind from his attacks. I visited for about 4 hours both Saturday and Sunday. Saturday was good; I played with Jonah while Andy took a nap and got some much-needed rest. But when I left Jonah attacked our sweet little aging cat, Sugarpuss, who didn’t even fight back, and Andy had to stop Jonah from choking her with her collar.
Sunday was worse. Jonah picked up Sugarpuss by her skin and brought her into Andy’s room in the morning, and we quickly realized we needed to find another home for our poor cat. Then I came over again to help out for a while. Andy was making coffee while I was in the computer room paying bills online, when I heard Jonah say “hey daddy?” and then there was a ruckus, followed by Andy leading Jonah into this room and onto the bed, struggling to calm Jonah during yet another attack. I went into the kitchen, where Jonah had yanked the half-filled coffeepot into the sink, yanking the cord out, spilling coffee and grounds all over the kitchen cabinets and scattering a huge mess across the floor. Andy kept Jonah in his room for nearly an hour and it took almost that entire time for me to clean the disaster of the kitchen. Andy was bitten and scratched and I was shaking, my heart pounding, my panic rising. How much longer can we do this?
We tried to prepare Jonah for the return to school the next day. He had a horrible day at school, seemed disoriented and confused, and while he was in the “safe room” he pooped and smeared it all over himself and the walls, something he’s never done before. (Actually, he has been doing very well with pooping on the potty at home). The note home from school tried to euphemize the day somewhat, but Andy and I both know the deal. Yesterday he attacked the bus aide and Andy several times, and Andy’s nerves are shot. Andy brought Sugarpuss to my mom’s house, where we hope she will be safe and do okay with my mom’s other, male, much-younger cat.
My nerves are shot too. The nurse at school called yesterday because Jonah’s left eye (the bad one) was all red and puffy. Andy gave him Benadryl and is waiting to hear back from one of the doctor’s he’d called, the developmental pediatrician or the eye specialist. I guess Jonah’s eye is a little better this morning but neither of us have illusions of hope anymore when it comes to anything at all.
It’s like a giant wrecking ball has come down upon us to usher in 2011. I don’t want to get out of bed and I don’t want to go to work and I don’t want to tour the residential schools and I don’t want to talk to anyone and once again I am barely functioning. I have no idea how Andy is doing what he is doing and I thank God he has the strength.
I survive on medication and deep breathing and very little food (I’m not hungry at all). I cling to other people’s prayers because I can’t pray anymore. I sleep as much as I can and when I get home from work I do suduko puzzles, and I make necklaces with beads, and I curl into myself and rock like a child, self-soothing, trying to empty my mind, trying to stop my ridiculously useless tears, wishing I were anywhere but now.
Wishing the wrecking ball would just crush me already and put an end to all this fucking pain.
The Never Normal 