I took this photo of Erik eating breakfast in a real chair for the first time yesterday. Note the footie pajamas (Side Note: At what size do footie PJs become completely creepy?). I can't locate a suitable booster seat in this town to save my life and have resorted to using the phone book to jack him up a couple inches so he can at least visualize the contents of the bowl he eats from. His legs continue to lengthen. His toes tend to bore holes in the ends of his pajamas. I can hardly cram his swelling feet into his orthotics anymore. My baby is turning into an anemic-looking version of the Incredible Hulk. Since he isn't gaining much weight, he is still wearing size 2T pants, which fit around the waist perfectly but are completely inadequate lengthwise and tend to look a bit like tiny pairs of ladies' capris. There's a bright side to everything, though. He is ready to go wading in a nearby body of water at a moment's notice.
The last couple days have been better. Either I am adjusting to Erik's tantrum throwing or there are less of them. We are changing up our routines in the house a bit, and it seems to be calming him down in general. I just surprise him as much as possible. I called my mother yesterday and invited her to accompany us to the playground. The sky was the color of a robin's egg, and the temperature was springlike. I really wanted to do something special for Erik, but he ended up furious at me for interrupting his afternoon with such nonsense, and I ended up having to hold him down to get his coat on and get him to the car. I have learned to carry him mid tantrum to the Jeep in the garage at moments like these, strap him kicking and yelling into his seat, and offer him a piece of string cheese while I finish my last five minutes of getting my things together -- without a large boy hanging onto my leg who insists upon simultaneously assaulting me. Oh yes. I'm learning. By the time I get back out to the car, not only is the boy calm and ready to go, but he has consumed 25 percent of his daily recommended intake of calcium.
Each time we arrive at the playground, I suddenly remember why I don't normally go there. The parents can be incredibly rude. The kids cause Erik to freak out and cling to me, motionless, with his hands clapped tightly over his ears. We were able to convince him to climb up on the equipment a little bit, but he was really more interested in running through a crust of old snow over and over and plunging his hands into filthy puddles. Don't get me wrong -- I think he enjoyed himself, but it hardly seemed worth the trip (we have snow and mud puddles at home). There is always some degree of emotional hangover in me the next day as well. I thought that the playground would get easier, but it most definitely hasn't, especially with Erik's seemingly intensifying sensitivity to unfamiliar children and the noises they make. In fact, he appears more different than ever. I know that soon the other children and parents will likely ask me questions that will be difficult to answer, and I am putting that off as long as possible. For now, I love the special education bubble we live in, and it is hard for me to step outside of it anymore. That makes me smile in itself, as I was so uncomfortable with that world at the beginning of all of this. I don't ever want to leave the comfort of the bubble we live in, but that day is coming in less than two years.
For now, Erik and I are learning to fly.
Today Erik and I visited Barbara, my author-friend. The visit went well, but I don't feel like writing about it. It's strange telling someone I have only seen twice in my life my most personal thoughts. I drove away feeling like I had an open wound and needed to sit for a while to collect myself. Her baby girl had encephalitis 46 years ago, and it severely damaged her brain. It's very difficult to discover this woman still hurts. She does a beautiful job of covering it and directing her attention elsewhere, singing and creating works of art in her spare time. She is one of the strongest people I have ever met and lives life with gusto. However, the fact that I can see the choppy surface of that reservoir of pain in her just a millimeter under her smile terrifies me. It tells me that there's no going back to not hurting. Even half a century won't dry it up.
I'm feeling pretty numb right now just dealing with what's in front of me at any given moment and, on top of everything, have developed a horrible case of writer's block. That likely means I am doing well in general. We were able to attend church Sunday without any problems whatsoever, and Erik's caregivers made it very clear that he will quickly make himself very well known there. They enjoyed taking care of him, and a new staff member in the nursery actually requested time with Erik and expressed the genuine desire to get to know him. We have gone from receiving eye rolling and feeling as if we were being swept under the rug to feeling like we have celebrity status. In addition, we are gearing up for Sophie's Run 2008 in April (the 26th) and hope to share registration information with our friends and family soon.
For now, I am signing off for a while. I hate to take a predetermined amount of time off in case I feel like writing before then, but let's try a week. I'm still considering pulling the plug on this old blog at the two-year mark, but I'll wait until I get to that point and see if I still have things to say.
Besides, how can you miss me if I never go away?
Labels: Williams syndrome