Catharsis

I had no idea anyone would notice if I stopped writing for a few days. Was I ever wrong! I have been afflicted with an aggressive case of writer's block and have not had the luxury of time to write, anyway. I am making time after a number of e-mails and phone calls checking on my welfare to post an update. I love each and every one of you!

Erik and I survived another group therapy session today. Being a complete masochist, I decided to give the parent group another go. As I made my way down the hall, I looked through the window into the evaluation room, the deceptively cheerful place where months ago Erik was labeled with a then very mysterious "severe developmental delay." There was a smiling couple watching their child play with an evaluator, and my heart ached a little bit for them. I wondered if they were as clueless as I was that day. I moved on and made myself at home in the parent room by flipping on the lights and staking my claim on the comfortable rocking chair and ottoman this time, choosing a glossy Reader's Digest over the behavioral handbooks and medical texts in the shelves but not absorbing any of the words. I was soon joined by the only man that attended last week, and we struck up a very superficial conversation about our work schedules, getting to know each other a little better. The mother I used as an excuse to attend last week came into the room, and I automatically vacated my chair for her, as she looks like she is going to deliver her baby any second. This gesture seemed to be the perfect ice breaker, and she struck up a very pleasant conversation with me. By the time group started, there were five parents in the room. The discussion leader, whom I was less than fond of last week, slowly but surely grew on me. Her personality is on the no-nonsense, blunt side, and once I got a feel for her, I felt comfortable opening up, which was not what I was expecting to do. There was no set topic, and we just talked for an hour and a half about our kids. The verbose woman with a brace on her ankle from last week very carefully and gracefully asked what was wrong with Erik, and I gave a quick lecture on Williams syndrome and all that has happened to our family to the group. The other parents suggested earmuffs or headphones to help with his problems with noise, and I couldn't help but think of poor Warren from the movie Something About Mary who screamed every time somebody tried to touch his ears under a set of furry earmuffs. This thought, as inappropriate as it might be to others, made me smile. I keep about 95% of my thoughts to myself for this reason. I spoke a great deal with this talkative woman next to me and learned she has cerebral palsy. I found her very easy to talk to. Her daughter is probably 2 years old and has hypophosphatemic rickets (XHL). This little girl is very tiny but can speak quite eloquently in an adorable, seemingly helium-filled voice. Despite this child's miniature stature and soft words, Erik seems to think she is the devil incarnate and acts as if he is terrified of her. In our parent group today, I once again found validation for my feelings and fears, which felt very good. Admittedly, I have a long, long way to go as far as accepting what has happened to my little boy and how it will affect him for his lifetime. Maybe I never will, but it is nice to feel accepted and understood by others who have gone through devastating heartbreak just like I have, although the disorders and syndromes may have different names and outcomes.

When it was time to go up to the classroom to see our kids, I found Erik sitting at the little table eating cereal in milk in front of a mirror, smiling and making faces at himself. I almost fell the frick over. Erik never eats at school, and he certainly never likes milk on his cereal at home. He saw me in the mirror but couldn't figure out where I was. When I went around to the other side of the table where he could see me, he gave me a giant, uninhibited smile. I really enjoy seeing the therapists interact with him, as they obviously enjoy working with him. After his hand was stamped and the goodbye song was sung, on the way out of the building, he told the lady at the front desk, "BYE!" I think we are making progress.

On the drive home, I felt unexpectedly raw and edgy. Heaven help the first person who pulled out in front of me in traffic or looked at me sideways. Even though the meeting went well, this facility is an extremely difficult place for me to be, and I imagine it always will be. No matter how positively I try to think, I am there because there is something wrong with the wonderful child in the back seat of my car repeatedly telling me to turn on all of the dome lights, and it hurts like hell. I felt like I had just left a really intense, heavy movie at the theatre. Since 10:30 a.m. is not a socially acceptable time to have a glass of wine (although when Erik cried for months at a time, I would have debated that issue), I put Erik to bed and did some mindless dusting instead. I took a deep breath and eventually made my way upstairs to my office. As I relaxed and worked, my cell phone rang. Low and behold, it was the orthotics office informing me Erik's leg braces are in. I go in at 8 a.m. Thursday. Will this feeling ever end?

A lot has happened this week emotionally, a lot of it related to a family friend who is dying of cancer. My parents, who are helping take care of her, took Erik to see her today. Although she has probably a matter of hours to days to live and is in and out of consciousness in a largely confused state, I felt myself come very close to tears hearing that she knew who Erik was and was happy to see him. I have a black cloud hanging over my head knowing I will probably never see her again. I will be extremely sad to know she is gone, but there is nothing that can be done now. I am thankful she got to know Erik, because the last time I saw her husband in the hospital before he died, I was still pregnant. That I will always regret.

I am surviving and doing fine, although it has been a tough week. I will probably post again after Thursday's appointment and maybe take some photos of Erik's braces. On a brighter note, Erik's cousins are coming for his birthday this weekend, and I am very excited about that. I can't believe I am going to have a 2-year-old!

xoxox