Wow, this getting back into the habit of writing is hard. It doesn’t help that I am the world’s worst procrastinator. (Um, does that actually make me the best?) It is so much easier for me to flit back and forth on Twitter and Facebook. Little snippets of conversation between Nik’s multitude of appointments, meals, snack, school work and play time. Of course, that just feeds into the whole short-term memory deficit…
So, I have nothing really moving or important to share now. Life is looking moderately steady —including the consistent lack of sleep each night. Nik keeps waking at about the same time and then waking/sleeping in these three-hour cycles. Niksdad and I have all kids of questions and half-theories about what could be causing the sleep disturbances. It may or may not be related to Nik’s recent (as in, this winter) development of Reynaud’s Syndrome. At least, that’s what we’re calling it for now; he has all the classic symptoms but hasn’t been diagnosed yet. That appointment is at the end of this month.
Meanwhile, knock on wood, Nik has been moderately healthy for the past month. An occasional need for Mucinex here and there but no real illness. That in itself is progress. He has had these weird episodes of extremely swollen tonsils without infection. We’re talking so swollen that you can actually see the tonsils touching the uvula. It does explain the intermittent food refusals we’ve seen recently, too. I mean, who wants to eat with all that stuff blocking your throat, right?
Tomorrow is another EEG for Nik. I’m not sure if I want the neurologist to find evidence of seizures or not. On one hand, it would explain some of the odd tics, facial expressions and behaviors we’ve seen in the past couple of months. On the other hand, it would mean that Nik’s seizures are back. Wow. That was a hard sentence to reread “…Nik’s seizures are back.” Yup, I think I hope the EEG is negative after all.
That’s the funny thing about this parenting of a child with so many unknown and overlapping medical and developmental issues, you never know which team to root for , so to speak. Does having a diagnosis mean the problem goes away or is at least treatable? Not necessarily. But, is the not knowing less scary than the big, scary possible diagnosis? It’s a damned-if-you-do-damned-if-you-don’t kind of existence sometimes.
So, I try hard not to focus on those things until the last possible minute —like on the way to the doctor’s appointment or the lab. (See, the procrastination can be a sanity saving measure sometimes!). But the truth is, the worry is always there. And it’s not just about the medical stuff. School, communication, and so many arenas. It gets paralyzing. Overwhelming sometimes —especially when it all snowballs. I just shut down. Maybe that’s why I stopped writing for so long, too? It’s so much easier to comment on someone else’s situation than it is to face my fears and anxieties.
There are a lot of those lately. So many I can’t even articulate them yet. But I will. Because I said I would.