It is difficult for me to write these days; I struggle to find both the time and the words to express all that is going on. Rather than giving snippets out of context, I simply don’t write. And yet, I feel like I have left people hanging, wondering what else is going on, why I am so quiet lately.
This post is a pretty accurate depiction of events which are now occurring multiple times daily; Nik’s mysterious pain episodes seem to be changing, taking on a demeanor that, frankly, I don’t like. The frequency has diminished, that’s true, but the duration and intensity have both been ratcheted up significantly. And the aftermath —the cursed aftermath —now leaves Nik limp and lethargic for a while. Whereas he used to simply shrug it off and bounce right back, Nik now needs a good twenty minutes or so of very quiet, low-key activity before he can resume his normal hijinks.
[NB: We have an appointment with the neurologist tomorrow morning to discuss this again. Also, we have finally gotten our pediatrician to order a CT scan and numerous blood tests to rule out any number of possible —but “statistically unlikely”— causes for these awful episodes.]
The disturbed sleep patterns also continue; their frequency seems to escalate as the intensity of the daytime episodes increases. As I joked with my mother on the phone today, Nik and I are both sporting such dark circles under our eyes that it’s in danger of becoming a permanent family characteristic. I joke, I laugh and make light because it is how I have dealt with such things most of my life.
I don’t have to tell you how I truly feel; if you have read my blog for even a short while —and if you have children of your own, be they with or without special challenges or circumstances —you know the pain and frustration I am feeling. So, instead of dwelling on it, I choose to shine the spotlight on the positive and wonderful things that are happening with Nik. That, too, is my coping mechanism —deflecting the attention away from the things I don’t want to think about or deal with. But know that for every wonderful, glowing post I write —about Nik’s learning a new sign, making some tremendous cognitive or social/emotional connection, or some funny thing he’s done recently —there are just as many I could write about the sleepless nights, the pain of not being able to help my child, or my utter frustration with a medical system which places disparate faith in a parent’s intuition, insights, and observations.
Sometimes, when I feel too full of the emotions, too raw from the continuum of pain-filled days, sometimes I can find the words to share it and I do. In the sharing of my pain, my burden is temporarily eased; I can feel the weight shifting onto the shoulders or into the outstretched hands of my sisters —and brothers— on this shared yet unique journey. When I have regained my strength and my perspective —my pluck—I reach out my hands to hold you, in turn.
Lately, I have felt like a bad blogging friend; my thoughts are often scattered as I read a post so I bookmark it to go back to and then forget to do so for days on end. I’ve been remiss in following up on comments left on my blog or memes and awards. It’s not that I don’t care, truly! It’s just that these latest weeks of escalation have just kicked my ass around the block and back again. So, I beg of you dear friends, don’t let go of that lifeline you’ve been holding for me. I’m struggling and may be down, but I’m not entirely out…and I’ll be back.
Maybe even tomorrow?