Learning to read

"There's an airplane in the sky" was the sentence that brought ears to my eyes last week and made my heart jump inside my chest at the same time. Because in the moment Yon said that sentence I forgot that there is no way he can really see that airplane, I forgot that he is sensitive to sounds and is probably just hearing it, I forgot everything I know about his condition and all I had in my head was one thought - Yon saw an airplane in the sky. In that second I forgot that kids with 40% vision don't see airplanes. In that moment all I wanted was to grab him and run home to test his vision again, prove that all the tests and the doctors were wrong. Prove that my son can see.

Hope is a tricky thing. On the one hand it gets you through the toughest moments in life, those moments were you feel like you can't breathe, like you can't take another step, like you are just waiting for the other shoe to fall on your head. In those moments hope is the only thing you have to lean on, hope that it will be better, that there is a light in the end of the tunnel. But hope is also a flicker that lift you up for just one moment, that moment that comes just before the crush.
When we got to Moorfields Hospital to get Yon's diagnosis our doctor told us that we should be happy that we got to this point. When you have a full diagnosis you have a clearer vision of how to proceed, of what to do. She was right of course, but she also took away our hope. Up to that moment we clung like glue to the saying that eyes develop until the child is 7 years old and we have a 30% chance of it all going away on its own. Not when you get the Genetic-Static-Condition stamp. This one has exactly 0% of being treated, of changing, of Yon ever seeing more then he does now.
Hope crushes in waves. Even after you think you lost it all, you can be hit by another wave. Every time it happens it hurts just a little bit more, every time it happens it takes just a little bit more for you to bounce back, every time it happens you lose just a little bit more of yourself.
Yon can't see the airplane. Just like he can't see the other side of the road, or the expression on my face when I am standing more then 30 cm away from him. Static conditions don't change. I know that, but I was still surprised at how fast I abandoned all logic and reason. I was surprised how long it took me to regain my composure, and most of all I was surprised how empty and sad it made me feel. Like I just learned of Yon's condition just now.
And then I was left with this question that has no answer - what do we have to hope for? What hope keeps us going?

School art :)

One of my main concerns is how will Yon learn to read. He has about 70% vision up close, but even with that he has the lack of clarity, the movement of the eyes, and the squint to deal with. I made sure he knows all his letters before he started reception, so he will have all the self-confidence of knowing the material, so he won't fall behind from the get-go, and because I was told that the way they learn is through flashcards that the teacher holds and they have to say the letter quite quickly and we weren't sure how he will be able to join in on this, because he might need more time until he sees each letter clearly. But even though he knew all the letters and sounds by the time reception started, we were still left with the question of reading. Because reading means joining letters to words, words to sentences and sentences to paragraphs. And that is not an easy task when you have to use big letters, when the letters on your page are dancing in front of your eyes, when it takes you a long time to read each word.
One of the things they keep telling us is how young Yon is. How he has to learn all the tricks and methods to maximise the vision he does have. I confess that I can and have told that to others who have asked me, but secretly I don't really understand how that work. So I resigned myself already to the fact that he will probably find audio-books easier, and that I should be grateful for technology. I resigned myself to the fact that he will never be able to read and write in Hebrew, because it will be difficult enough teaching him how to do that in English. I have resigned myself to not thinking about buying books that "will be good for Yon later on" and to donating all the rest.
Ron learned to read just after he turned two. By the time he was five he could read and write fluently in English and in Hebrew. It was so tough for me to accept the fact that Yon didn't want to learn, didn't care about letters or numbers or reading. And after we found out about his condition I was terrified that he will never learn how to read. I know technology has come a long way, and that you can get audio books and the accessibility features are amazing, but how do you make peace with that?
Maybe it doesn't seem so bad, maybe it's just me, but I was a bookworm all through my childhood and adolescence (and I wish I had the time to be one right now too). I was one of those people who borrowed seven books a week from the library, and read one on the bus on the way home. I was always reading. I read everything I could put my hands on. Books gave me an escape, a new world, my English. I couldn't live without books, and the thought of my child missing out on all this, on the feel of opening a new book, on being able to sneak peek at the end, it was just too hard for me.
It doesn't help that Yon actually loves books. He loves our weekly trips to the library, he likes hearing stories, he likes flipping the pages. Somehow it made it even sadder.

Yon in the library last week

Last week they finally started reading lessons in Yon's school and he brought home a book. It's the Oxford reading tree books, so you know how it is, the first books have one or two words per page. He was so proud of it, he ran out of the classroom with his book bag to show me his book, and made me sit outside his classroom and read it to him. His teacher did write in his reading journal that he was interested and enjoyed it, but we didn't even try to ask him to read it, but read it to him a few times.
This Monday he brought a second book home, "The Caterpillar". And this time it said in his journal that he actually read a few words. The teacher told us that Yon is doing excellent in all the studies (I don't think she believed us when we told her he knows all the letters and how to write a few words). So we got home, ate some of Ron's cake, and asked him to read the story.
And he did.

He read every word (well except for chrysalis), he understood it, and he thoroughly enjoyed the whole thing. We've done it every day since, with other books too, and he loves it.
So maybe there is hope after all.