It’s been a rough couple days – so much happiness about the upcoming trip, but daily we’re hearing more eyeball updates from Ben that are scaring me. Besides the color changes he told me this morning that he’s seeing floating spots that are blurring his vision in his good eye. My stomach sinks every time he tells me new things… He’s having more accidents – he’s not able to see things to the sides of him so he’s knocking things over, breaking and spilling things, bumping himself on corners. It’s hard on him (he feels so bad about the tumbles) and hard on us (I’m increasingly scared about his safety.)
While there’s a possibility he could legally drive if his eyes did not change at all going forward, I have to admit that it’s not wise for him to try driving when he cannot at this point safely gauge a car’s speed well enough to even cross the street on foot. And realistically, his vision is deteriorating – it won’t stay stable. (And we’re still waiting for the final official eye report from the most recent visit – if his visual field is at 20 degrees he cannot drive.) Putting him behind the wheel I feel would be a danger to himself and others, so I am having to make peace with the reality that as things stand, he will not be able to drive. Which makes my heart ache…
Those were my two big goals – he could read print well enough to love reading (that it wouldn’t hurt/strain his eyes) and that he would be able to drive (for the independence that brings.) He won’t be able to drive. I know it’s not the end of the world, it will be okay. But wow… this really stinks.
And yesterday he told me that when he reads a lot his eye hurts. (He uses the one eye to read, the other eye doesn’t work – according to him.) I need to get him more comfortable with the magnifier (he reads faster than his hand moves the magnifier so it annoys him.) He’s never complained about his eyes hurting because of reading before and that just made me stomach drop. Then he asked if we could find him the Harry Potter books on audio so he could still listen to them instead of reading them. Which is fantastic, that he thought of that option. We’re also going to see about getting digital versions and putting them on an iPad for him to zoom in, hopefully if he could scroll through he would prefer that over the magnifier and hard copy. Kit says the new iPads coming out have a retina display (oh, the irony!) which will be easier on B’s eyes. We’re going to price those to see what options we have as they also have Siri, which can help him a lot with navigating things…
We found out he MAY qualify for the Talking Book program (we are talking with his case worker about that) because he does need magnifiers and because of his visual field being so restricted. It’s one of those things you don’t want him to qualify because that means his vision really is that terrible, but you want him to qualify because he would love the service. 🙂 (Update: he qualifies, he’s legally blind due to visual field loss, but I’m still hoping as he gets older more testing will somehow magically tell us it’s not that bad and maybe contacts will help restore some of that peripheral vision? Maybe?)
Remember that legally blind is 20/200 with glasses in your BETTER eye and/or a visual field of 20 degrees or less – his good eye is 20/40 last we heard, and I’ve not seen the official report but his field was around 20 degrees… which means I was wrong, he may qualify as legally blind already. Ouch.
So that’s all the sad news. Now the happy news?
We were looking at membership levels for the new Perot Science Museum in Dallas. We’ve heard such wonderful things about it, and years ago we visited the old science museum in Dallas and the one in Fort Worth. Ben loved them – all the kids did. We were going to use the extra funds from our anonymous donor to get the pass for the kids but today we got an email from a fellow preemie mom sharing that she had contacted someone she knew at the Perot and they were donating a membership to our family!!! And not just the basic level we were getting but a patron level with so many extra benefits – including access to the other science museums in town (which the other membership did not include.) You should have seen Ben’s happy dance when I told him! And I just sat there crying because the last couple days of bad eye news have sucked – and Ben’s been expressing more of his fears and worries about his eyes and how he doesn’t want to go blind and C’s been talking about his worries for his little brother, how he’ll be able to do things without his sight. It’s just been HARD. Having this news was a bright spot in an increasingly dark situation – we are thankful. (THANK YOU, Kara! For your kindness and thoughtfulness and support.)
Two thumbs up from Ben!