We went to the park today, to the playgroup that we've attended for seven and a half years, and I was reminded that I haven't been keeping people informed about John. I mean, I already knew as 2008 ended that since June, I hadn't updated his website or written much by email to the many people who made it possible for him to attend the last leg of his out-of-state therapy program. I already knew that I'm really, really no good at verbally describing a situation. And I already knew that I was hanging out with people who I see infrequently and even less frequently get to talk to, because that's how it is at the park. You're there to catch up with people and let the kids play. But somehow I was totally unprepared to present our current situation.
Everyone was chatting about their lives, present or future, and I mentioned that John made a big achievement this week by going to childcare for four hours and not getting sick. Now, this wasn't actually true, because he did refuse to eat that night, even yogurt, and that is one of the first warning signs for him and it means that I will have to repeat the experiment two more times and decide if he doesn't get sick, from the data of the three trials. So maybe my white lie was the first problem. I often get into trouble when I try to simplify a story. So, since being excited about going to childcare for four hours and not getting sick is kind of different, I then had to explain where we are at in the intersecting planes of symptoms and diagnoses. In one or two sentences.
It wasn't the audience; they followed along just fine to that point. It was the challenge of summing it up. I can't sum it up, and I don't know if I want to sum it up. I would very often like to have it summed up for me, and that is why I keep taking John to specialist appointments where we leave with more or less mutual respect and mutual unanswered questions. If someone summed it up for me then I could say, "Oh, John has a novel genetic mutation which causes a complex of multisystem symptoms and they're going to call it JQ syndrome. The prognosis is la la la."
Meantime, we all have our different ways of summing it up. John's doctors can do it by listing the existing diagnoses, plus the yet undiagnosed features. Or they can just hold his chart in their hand. I sometimes make attempts at summing it up, like the "John's 2008" email with a sentence for each month of last year. Some other ways I've tried are:
"Well, we thought we had a diagnosis for John of septo-optic dysplasia but there were other conditions that weren't supposed to go together with that, and then he got sick in July and we got really confused." No, that one disintegrates at the end.
"He has septo-optic dysplasia; a sort of mild atypical cerebral palsy; congenital fibrosis of the extraocular muscles, not genetically confirmed but under study, with features of unilateral Marcus Gunn jaw wink ptosis, weakness of the eye closing muscles which as you know is not part of any of the diagnoses I previously mentioned; weakness of parts of the mouth preventing chewing and much speech; periods of extreme weakness and lethargy which are partly controlled by a strict resting protocol; and unexplained GI symptoms such as alternating constipation and diarrhea, undigested food, reflux, and periodic refusal to eat. The additional symptoms led to suspicion of a possible mitochondrial disorder." That one makes me feel like a geek and it is way too long for most people's attention span. But, it's accurate.
Those are attempts at summing it up, and I have to do it, and I will keep having to do it. Eventually I will learn to communicate verbally, or not. But what I really wish I could do is offer something much deeper and more descriptive: the defining moments. They are very long moments where time stops and many things are all there at the same time, and though they require the medical details for background, they say so much more than that descriptive, accurate paragraph.
They are the pictures in my mind when I think about who John is and where I have been with him as his mother. They are the rich, small catch in my throat when I remember a special moment of sadness or happiness shared with others and John.
They are things like: the moment at 5:30 PM one day in the hospital when I finally got to lie down and rest after a day that included a poorly-administered fast, a shocking screaming physically restrained force-feeding imaging test, a surprise EEG, and an alarming physical wilting by John that no doctors were there to witness...I knew I might throw up if I didn't rest, so as soon as I was sure John was actually breathing and only sleeping, I laid down on the hide-a-bed chair and pulled the hospital blanket over my head and went to sleep. No one came in for almost 60 minutes. I learned the next day that a doctor had come by and kindly sensed through the window that speaking to us wasn't an option.
Or the moment when John was 18 months old and Bonnie was working hard in an un-air-conditioned boathouse classroom teaching him to crawl, and after many days of working like that, bent over him helping his limbs' timing as we kept the motivation of rolling balls or other toys going, she stopped, and expelled, "He went contralateral on both sides," wiping a section of hair off her sweaty face and sitting to catch her breath. That meant that for a second, he had finally crawled.
If I could share those things, now that would be keeping people informed.
I have to say the first type of thing, but I wish to say the second, and that is what I hope to do here.