At the moment I blog periodically just so that people don't start to wonder if I have ceased to exist. It's a shame because I enjoy blogging, I enjoy writing, but I don't seem to be able to stay on top of much of anything these days. We're coming up on 15 months of not sleeping through a single night. It has depleted me more than I ever could have imagined.
I don't like to come on here and complain. I also really don't like being in my thirties and feeling like I'm in my eighties. So I'm afraid you'll have to just deal with a bit of complaining. Waah. There.
Yesterday I picked Noah up from school and he was grinning and bounding around, and once in the car, singing along (in his own special way- it has to be experienced, not explained) with the Lazy Town cd that was playing. He had let me give him a quick squeeze and kiss on the head before going in that morning, as well, so I found myself smiling through the rest of the carpool routine and drive home. This has not been the norm for Noah for some time. For months he has not been quite himself, a bit slower than normal, not eating well, fewer of those days where he is just full of beans and all wound up. His neurologist said he could be having lots of seizure activity that we can't see on the outside, on top of the too-frequent bits we are seeing. Or, she said, or, it could 'just' be general deterioration of his brain due to all the seizure nonsense since they began four and a half years ago.
Oh. Is that all?
We need to have another EEG done to compare to the one he had right after the seizures started to see if, in fact, there is permanent damage being done to his brain. If so, there is not too much to be done, so it's not an emergency type of thing. But it would be helpful to know so that we have a clearer picture of what is happening, or not. I've said it before, but seizures really and truly bite. It's an area doctors really don't know anything about, it's everybody's best guess as to what's going on, which means treatment is throwing darts and hoping one sticks. It's medication roulette, if you will. It's a hoot.
Noah regularly teaches me and reminds me of what is important. A day of feeling pretty good is a big deal, not to be taken for granted. You never know how much time you've got with anyone you love, so even the junky days are a blessing. Noah can go through stretches of absolute misery, pain, and sadness, but the moment he feels pretty good, he is up, smiling, swinging outside, gleefully chucking water at some electronic device, loving life. He doesn't dwell on or relive or complain about those bad days. He is amazing that way.
I'm trying to, in my own way, follow Noah's example, which is why I am upright and tidying up after dinner rather than laying on my soggy lawn with my head through the fence letting loose a scream of utter ballistic exhaustion. Meanwhile, we will get Noah checked out, and hope the news is that he will be as present and communicative as he manages to be right now, for a good long while.
I adore that boy. I am so blessed to be his mom.