Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.
Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye. (Turns out I’ve been spelling it wrong for a while). I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone. It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.
Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible. Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him. At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.
On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.
Saturday Andy was very tired (he struggles with insomnia). I tried to step up and help out more than usual so he could lie down. I gave Boo his bath and offered him small sips of his beloved black soda. I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22. Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.
We went outside to blow bubbles — I hold it? — Jonah asked after I blew a stream of bubbles into the air. I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself. He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.
Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven. Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye). At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim. I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.
Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along. We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate. Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long. A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).
And so Saturday served, also, as an early Mother’s Day for me and my boy. I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him. And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.
I hope the operation goes well. I hope Jonah doesn’t get too sick. I hope we can keep him pain-free. I hope his left eye’s vision is somewhat restored, or at least not damaged further.
I hope.
The Never Normal 