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.
I love this. Don’t you find that when you start writing more it all comes tumbling out, even when you start out a post in which you think you have nothing new to say? I think that’s healthy. Keep writing, we can handle all these fears and worries, just as well as we handle the excitement and milestones.
Jordan said it so beautifully. What stops me sometimes is that there are other bloggers who are so much BETTER at finding the poignant story than I am. I need to just write – just like you did. Thanks for inspiring me.
XO R
p.s. hug that boy for me. And hugs to you.
You inspire me too… just get it out there. Write it. Blogging isn’t meant to be an anthology of carefully edited essays, it’s meant to be real life. At least that’s what I think, though I struggle with this… And I miss so much back story and follow up with FB/twitter (I am now realizing).
Sometimes when things are overwhelming, you really do need to take them 140 characters at a time – metaphorically or actually. There’s nothing wrong with that.
Yes, you said you would. But that doesn’t mean you have to. Just know that whether it’s 140 paragraphs, 140 characters, or 140 hours of non-posting solitude, we’ll all still be here when you need us.
Good luck tomorrow. Let us know how it goes. Or don’t. Either one will really be okay.
I both love and hate how accountable the internet makes me. Yes, you said you would and by committing to it & following through it can make you successful and accomplished (at least in this one thing) when so much in your life you just can’t control. But, the pressure, arghh! It is easy to see how one would become overwhelmed in your situation. That mix of wanting an answer but being afraid of what it might be, you said it so well. I think it is true what mom-nos said, we are all in this now for the long haul, like a marriage, for better or for worse, sickness & in health, regular post or not: We will still be here. Good luck today.
Hugs and I hope today is not too hard for you and Nik.
We wait to hear it all. 140 characters or more.
I know with the waiting for the diagnosis, the “answer.” Just the thought of it brings tears to my eyes.
Love to you, my friend.
little bites or four course meals, we’re here to share them all. and yes, the worry .. always.
hugs.
What Jordan said. And the others, too. We’re simply here for you–however, whenever you need us to be.
Thinking good thoughts for you and Nik today regarding the EEG.
Hugs!
Oh, wow. You have your plate full, mama. No WONDER you want to only go as far as FB and Twitter.
What you need is more hugs. ((hugs)) and that’s not nearly good enough.
I hope that you’ll find out soon what is going on with him. It would be very hard to not know all the time. And it would be hard to keep going through all these different opinons
This is such a great post. I look forward to seeing more of your writing. Mind if I place links to here from my site: