Awakenings

I would classify my week without writing a success. If I had to rate how it went, I'd give it a 6 out of 10. I'll do it again.

Honestly, I thought I was going to keel over and die at first. Tuesday I found myself in a dark state all day, tears spilling while I tried to focus on my work. Why? My experiment wasn't working. I wanted instant results. My brain just wouldn't shut off, no matter what I did. In fact, I just seemed to think more without writing as a pressure valve. At the risk of sounding schizophrenic, the brick in my brain I acknowledged in my very first post is still present, although I am used to carrying the weight of it now. However, it remains quite palpable and uncomfortable. This is when I think another child would come in handy. I wouldn't have the time to obsess so much about Erik's syndrome. God, I wish I wanted another child. It truly bothers me that I don't. I tried to want one. I pictured my life with another child and even smiled upon imagining it, but I when I looked at the mother holding the baby in my own daydream, she wasn't me -- and I didn't want it to be. What's wrong with me? I came to the conclusion that with work and Erik, overloading myself with yet more responsibility might be a poor strategy. In fact, it might be what finally sends me on a one-way trip to the nut house. I'm following my instincts on this one, which are less than subtle when it comes to this topic. If I must go away to stay anywhere for a while, I don't want it to be where I eat quivering blobs of gelatin with plastic utensils or watch television in anything called a "day room." Please. Unless you can promise me enough tranquilizers to give me a couple hours of REM sleep. Oh, yes. I'll do anything for that.

I tried to watch movies. I turned on the television and came across Awakenings with Robin Williams and Robert De Niro. I watched about 10 minutes of the scene in which all of the people come out of their frozen, catatonic states. It has been years since I saw that particular movie, and I really wanted to sit down and enjoy it, but I was afraid my tears would never cease if they began to flow again. I read my book on Williams syndrome instead.

One of my best friends called me Tuesday or Wednesday, and after he got over the shock of reaching a snot-packed girl in the middle of an extremely ugly bout of sobbing, he told me I need to focus on only what I can control. The trouble is, I think I am. I am consumed by it all. It's overwhelming to think about therapy and doctors and wonder if I'm doing everything correctly. There are no real guidelines to follow in terms of what Erik needs in terms of therapy, and the doctors here are of little value to me, which means I become the one doing the research and asking for tests. His therapist told me Thursday that once he gets into the school system, they will be there for me, but she warned me that I am the one who will need to fight for him. There is no doubt in my mind I can do this, but it seems like a recipe for becoming more obsessed. I wonder if I will ever fully recover from the horror of all of this. I have scheduled an appointment for Thursday with a private physical therapist who uses hippotherapy to help children with disabilities. I also scheduled appointments for his eyes and his teeth in the coming months.

I was in bed cuddling with my ill-tempered, slightly stinky, geriatric cat the other morning thinking of the days when the two of us lived alone in my little blue shack. My worries then seem laughable compared to the ones I have now, although I know they seemed monumentous to me at the time. I was lonely during those years, and I can remember how that felt. Still, I take a look back at that girl mowing the lawn in the summer heat and wonder who she is. She looks like a stranger to me now.

Tuesday afternoon I discovered a card from Massachusetts in the mailbox. On it was the name McGarrah in looping, red felt tip ink. Inside was a card from Anne McGarrah's mother, thanking me for the letter I wrote after her daughter died from complications of Williams syndrome. She enclosed a copy of what was read at her grave. Before she died, Anne apparently told her family she would be waving to them at the funeral as they said their goodbyes. It was very personal, unexpected, and touching. Also included was a newspaper article documenting Anne's interactions with world-famous neurologist and author Oliver Sacks, whom Anne apparently loved.

And there it was.

The article explained Dr. Sacks was the subject of a movie called Awakenings, the movie I had previously been drawn to but turned off. I had no idea Dr. Sacks was the main character in the movie. I paused and fought the urge to look over my shoulder. I suddenly felt Anne was waving to me.

Thursday Erik parroted my words over and over. Communication with him is sometimes difficult. There are days when he demonstrates he understands parts of what I am saying and then days when I wonder if there are any lights on at all. After listening to him repeat each of the last words of my sentences all morning, I was ready to put my head in the oven. Dominick and Kathy came to visit us in the morning, which was wonderful (she brought piping hot coffee and pumpkin scones), but it's always difficult when I see how far behind Erik is in terms of...well, everything.

By yesterday, I was doing better. I made Erik spaghetti sauce with beef and mushrooms. Before we sat down to eat, he went to the window and began sobbing, rocking back and forth on his orthotic-encased legs and saying, "GO WAY!" He insisted something was outside, but I saw nothing, even upon turning the porch lights on. I'm not entirely sure what that was about, but it gave me a serious case of the heebie-jeebies. Sleep had eluded him all day, and he was exhausted.

It has been a roller coaster ride of a week, but I made it. What helped was a message written in looping, red ink on the day I needed it most.

BE STRONG.