Vision

When I was in the tenth grade I dissected a cow's eyeball. I remember this event very well because my partner was John Daughterty, a boy I had an on and off again love affair with all through high school. The only thing I remember about the eye itself is the way that it looked as it went flying threw the air when he threw it at me during a quarrel. I don't remember anything about the mechanics of vision or the organ itself. I couldn't tell you how we came to, as a group of beings, process all this information that comes through these windows to the world.
When Jonah was diagnosed with severe myopia at age 13 months, I remember the tears falling from my eyes and the way that my daughters looked solemnly at me and the look on Jonah's face of which I came to recognize as his "without glasses" face.
After two years I am still grappling with this. We have a ophthalmologist, who we see regularly. We had early intervention services, and services through Perkins School for the Blind. He is followed by doctors at the Low Vision Clinic at Perkins and now will be receiving help from the Carroll Center for the Blind and Visually Impaired. The course of his vision issues has been an interesting one for me on all different levels. I have periods of time where I think that he will be a little boy who needs thick glasses and that will be that and then I have periods of time where I am so worried about him and confused. I am still learning. I know more about the eye today than I ever learned in school. I understand how it works. I understand that Jonah has an elongated eyeball and that his retina has very low pigment and that he is at a higher risk for retina detachment. I understand what that means, that he could just eventually lose pieces of the picture, spots in his world. I understand that myopia tends to get worse with age and that he could lose more of his already preciously small amount of vision and this makes me worried.
I understand all of these things but lately I have been thinking emotionally, spiritually about what they mean to me and how I make sense of them and it makes me quite sad.
Jonah had an IEP meeting last week at the Gloucester Preschool. It is supposed to be one of the best around, especially for special needs children but when Gary and I visited it in the fall, I knew I could not send Jonah there. I knew that Jonah would be a homeschool kid too. We continued through the process however because I do want the help from the Carroll Center and this is the only way I can get it.
So I had to sit through the meeting, all three hours of it. For the most part it was fine. I understand what schools need to do and the way that administrators and teachers think about things like this. What surprised me most were some of the things that the woman from the Carroll Center was reporting. Jonah will not be able to drive a car ever. For some reason this makes me so sad, this loss of independence, this loss of a rite of passage in our country. Jonah is not seeing that well even with his glasses and could possibly benefit from a cane someday.
So I have spent the weekend looking for more information. I checked out the few books that there are on vision impairments. One in particular has been very helpful entitled, "Children with Visual Impairments, a Parents Guide, " by M Cay Holbrook.
Last night we were finishing up our Christmas shopping and I was in a huge Barnes and Nobles. I was searching for a book for Jonah for Christmas that featured a child with glasses. I wasn't looking for Arthur or Magenta gets her new glasses or something like that because Jonah doesn't have typical glasses like those characters. I was looking for a book that captured his experience, his reliance on his other senses, his fear in the dark, his perception of the world. I asked around. The friendly woman brought me over to the Special Needs section where they had a billion books on autism but not one on visual impairment, nothing. They had a book on vision with autistic children but not just plain old vision. The woman told me I should write one. Normally this type of thing would roll right off of me but last night it made me feel incredibly alone. I feel alone in my choice of schooling, and alone with this child who is not blind and yet has a serious condition. I can't go to the schools about it because I don't have any faith in their ability to help and I have lost faith in his ophthalmologist who did not explain his condition enough to me because he was afraid, I am sure of hurting my heart even more.
Jonah is in the bath with Nora, his little buddy. They are playing Santa Claus face with the bubbles in the bath and some game that involves farting in the bath. The kitty is sleeping behind me and Sadie is hanging out with Myrtle. Gary is lugging in all the Christmas stuff and Molly is still sleeping. Two more days until Christmas and my life moves on in all sorts of interesting ways.