Tuesday, October 22, 2013

9 December 1983

The darkness I pushed away, the black fear walking at the edge of my consciousness, is here with me to stay.

They stuffed these words into my head: deformity, orbits, birth defect, genetics, coronal sutures, surgery, staged surgery, reconstruction. What is there to reconstruct? I failed at the construction. I was worried about his breathing. I kept asking about it. I worry it might stop. I listen to him breathe all night long. How am I to understand this?

They are sending us to Boston next week, to a doctor - the doctor who wrote “the book.” They showed me this book while we were in Norwalk Hospital. A photograph in it looked like Trevor: his exposed eyes, the beak nose. Did I do this to him? Was it me? The genetics people asked me so many questions: my family, my health, the pregnancy. They counted my fingers, asked me to take my shoes off and examined my toes. No one told me what happened to Trevor. They told me what he has, what he is now: a diagnosis, Crouzon Syndrome. They told me he needs plastic surgery, again and again – like an accident victim, like a socialite.

He is so sick so often. I am tired. My Mom cried. I can’t remember ever seeing her cry.

The night Trev was born six months ago, I was so happy to have another boy. I was afraid I wouldn't be good at a girl – such a silly thing to be afraid of.  Alone with Trev in the hospital room, I was excited, so confident, looking forward to the wonder of watching him grow. My thoughts were: I've done this before, I know what to do. I peered at his serious eyes, the odd shape of his forehead, and considered how he didn't look like any of us – no family resemblance. He looked like a wise old man. 

Monday, October 7, 2013

18 & 20 April 2011

18 April 2011, 2:41 PM

Now into the fifth hour of trying to find summer, fall, and life options for Trevor. He is home from school and we are attempting to work together. It’s not easy. I am impatient. The medicated slowness with which Trev approaches the various tasks and research involved in tracking down programs, registering at websites, and making decisions about what interests him and what does not is a lesson for me. Right now I've decided I need some fresh air. I’m off for a fast walk at Mine Hill Preserve. I will drag Trev along and we can air out our brains to prepare for a few more hours of work before dinner time.

Progress? Not much.

20 April 2011, 1:33 PM

Back at my desk. Trev went back to Worcester this morning to pick up his prescriptions. Due to the health insurance restrictions, he couldn't renew them before he returned home last week. Grrrrrrr.

I’m glad for the respite though. We were experiencing communication frustrations and falling into our usual roles. My role: lecturer, enforcer, voice of doom, efficiency expert, organizer, encourager, impatient conscience-like guilt-inducer. Trevor’s role: calm voice, guilt-wracked graduate, fiercely independent/shamefacedly dependent, nervous son, environmental expert, musician, dog-petter, person with several handicaps that serve to bollix up access to resources and manipulation of complicated and often arcane online job/school application processes. We dance this dance and our actions bounce off of each other in an oil-and-water way. An eavesdropper might think we’re fighting and, sometimes, this is the case. I’ve got the voice, the tone you would read disapproval into, the demanding accusatory-sounding one. I think I developed it as a young mother giving my kids instructions on how to clean their room. It’s the listen-up-good voice, the only-way-method voice, the I’m-in-charge-here voice.

Read another way: I fall back onto old habits perpetuating a mother/son dynamic we should have stepped away from years ago.  I know I should step back. How? Trev will fall into depression, move home, and play blues guitar in his room for perpetuity if I don’t, ahem, help him. He’s got a bachelor’s degree and a master’s degree. He’s smart. But he can’t see or drive and needs to take seizure meds that make him operate as if he’s under water.  He is often alone. He’s experienced depression to the point of suicide. His absent father is non-participatory and functions more as a sibling than a parent. Friendship – a physical circle of nearby friends who know, understand, and offer support – eludes him. Many people ignore or take advantage of him. I can’t just stand by. I am compelled – hard-wired, to help.

This is a frustrated parent thing. I’m supposed to know what is right – the right path for my child. I sort of do: Trev gets an education, a job, and contributes back to society. Along the way friends and relationships develop. Trev grows apart from me and develops his own life. I fade from parent to advisor to cheerleader to doting and doddering grandparent. Fading hasn't occurred to the extent it should. I know this. I want to let go. Trev wants me to let go. It’s the right thing to do, but it’s also the wrong thing to do.  We’re back to what I’m supposed to know: the right path. Truth is I don’t know it. I can’t find it. I’m exhausted looking for it. There are very few highly-educated, fully employed blind people. A lot of them have a spouse serving as life guide and manager/supporter/helper. What is the secret to getting there? How do we get these particular planets to align? This is my heartache. This is my fervent wish. 

Wednesday, October 2, 2013

26 June 1987

It is strange how I get this disorienting feeling. There are too many things for me to do. I can’t catch up. On top of it all I am bone tired and plagued with guilt. I constantly worry about smoking and I smoke. Ugh! I would feel fabulous if I could QUIT! I am trying every trick but not deciding to do it. I must take the first step. I must grow up. The advantages are limitless. The disadvantages are frighteningly scary. D is weird lately, a strange attitude, constantly challenging me, distant, testing. I don’t like it and my knee jerk action leans towards nagging. His back hurts and it makes me miserable. How can I take up all the slack from what he is not doing? Of course I look for his sympathy as I do his chores but he probably feels angry because he can’t do it. I am tired of feeling bad about D’s back. I’m tired of feeling bad. I want to feel good. 

Today was Trevor’s fourth birthday! He is so grown up. He loves it. Josh is grown too. They both got spoiled rotten today. Too much stuff. Gram and Pops were here with Aunt F and the discussion predictably turned to the “good old days” when you received two toys and you appreciated them, not like these days when kids are showered with trash and don’t appreciate a thing. I was pissed at this. Do they really need to openly criticize me during a joyous event? I see the truth but I also see the hypocrisy in those words. They were the ones doing most of the showering. I give my kids what I little I can because I love them and delight in the joy and anticipation and surprise in their faces. They make sacrifices in other areas of their lives, big sacrifices other children aren't asked to make. Neither of them lives an easy life. To me they are the greatest. I indulge myself by this rare gift occasion. I realize it might be about me, huh?

I wish to write a book. I know there is one in me. I think it would take me years.

Events: Josh won a math award on June 17, 1987. He’s in the top 10% of second graders in the New England Math Olympiad. I am thrilled and proud, very proud of this tough kid. He also received a “1” for excellence in science. Hooray! I’m so pleased with his accomplishments.

Trev astounded us last week by repeating word for word a favorite book he loved to listen to, “My Visit to the Dinosaurs.” This is a book meant for second or third graders, about 30 pages long. I nearly dropped to my knees. Despite all the difficult surgeries, his bad hearing and eyesight – hallelujah! He is sharp as a tack. Tears spilled from my eyes. I never thought he was slow but felt his handicaps would make things harder for him. What a surprise! The little bugger was taking it all in, absorbing life like a sponge.

I imagine myself at a store or restaurant. The kids gather around to stare at Trev, the kid that looks different than all the others. Their mothers are overly nice. I look guiltily at pregnant women, knowing we are making them feel bad by our mere existence. I nonchalantly whip out a book and politely ask Trev to read a few pages to pass the time for us. Instantly, we are all in his thrall as he recites a gripping soliloquy from Shakespeare. Jaws drop. Misconceptions are shattered. I polish my nails on my lapel (I am well-dressed in this daydream) perhaps I toss a drop dead look over my shoulder. I take Trevor by the hand and we stroll to the car.

Phew! Is this psychotic? My imaginary life is a kinder place.