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?
I’ve found that in our world of special needs parenting, these parents are the least judgmental, most patient, most humble, most SUPPORTIVE people I have ever met. We understand more than most the immense load that you are carrying (or can guess at it pretty well).
So, no worries, sister. Write when you can, and write what you want. We’re here for you (and thank YOU for all the support you give us!).
XO R
What redheadmomma said. Exactly. Word. For. Word.
xx
k
I have often wondered how you manage to be so positive all (or most) of the time. Please know that we’re here to read the posts about how awful everything is too. Hugs to you tonight.
Apparently Blogger is being fickle tonight and Marla has not been able to get her comments to post. She emailed this to me:
I am so sorry you yet to have answers for Nik’s pain episodes. they sound so familiar to M’s. As you know it took years to get a diagnosis for M and I still worry. Today she had a bad one that left her moaning at a friend’s house when I was trying to get out for an hour or two. Ugh.
Has Nik ever been somewhere big like The Cleveland Clinic or somewhere like that? I know you have tried everything. I wish I had some advice or answers. Not knowing is the worst part. Not being able to stop it is even harder. That EEG showed nothing right. So frustrating.
Sending prayers and hugs your way.
Marla
***HUGS*** Thinking of you guys. Hope we get some answers- SOON!!!
Sending you big hugs and sending
up some prayers for you both.
xoxo
Taking care of yourself is paramount. If that means going to bed early or doing something mindless rather than keeping up with blogging, so be it. We’re not going anywhere.
The hard part is taking care of ourselves as well as we all care for our kids, but you deserve rest and peace, too.
Thank you, my friends. I do know that I can share the good and the bad with you. It’s been more a case of not finding the words from simply being too drained and tense.
It’s also a balancing act of deciding how much to tell of a story that is not entirely my own. As Nik grows and changes, the lines become less clear to me sometimes.
You don’t have to take care of your readers, too, friend. You have Nik and yourself to tend to; we are here, good and bad, silence or rants, come what may. We share a sisterhood in caring for our special kids that guarantees it.
I don’t know if this comforts you, and I know I have said it before, but I want to remind you that my childhood was full of mysterious, scary,traumatic health issues that put my mother through agony and she always had to imagine the worst because doctors told her to expect the worst and NO ONE knew the whys or the whats; but they simply got better all on their own in time, just as mysteriously. Sure, Nik and I are different, but when your mind toys with the scary thoughts, know that even though there are often no answers, I BELIEVE that Nik is going to overcome this one way or another. He has you, your family, your community pulling for him, and so many good thoughts coming your way, and he’s strong and tough, and there is no known reason he won’t get better and better. No one who has known me for the last 20 years would believe I had any childhood problems, and I hope and pray one day people will be greatly surprised to learn what Nik and his loving parents endured in his childhood.
In the meantime, it must be so hard, each time it happens, that I want to remind you to breathe, be gentle with yourself, and feel the love that comes to you from near and far.
So many words but wordless. I know what you mean.
You are in my thoughts
I’ve got no words. Just love.
And prayers.
Hi honey. You’re a doll to think of us and I won’t lie and tell you I don’t pop by EVERY DAY for an update, but really. You don’t have to put on a show for us. We’re just your posse, as Drama would probably say (because unlike us, she hangs out with cool teenagers). Seriously though, I think it will take a huge weight off your shoulders to get to the heart of the mystery pain. Nik is such a trouper, but I hate to think of him hurting. Same could easily be said of you
BTW, my secret word was cslufcru, which I have to admit sounds a little naughty.
its funny,I’m always thinking about my readers too. I feel guilty when I post 3-4 days in a row but then go silent for a week. Here is what I’ve learned…they (we) are always around when the new blogs appear, even if there is a gap.
We’ll take what you can give us and hold our breaths and your hand in the meantime.
Prayers are being lifted up for you all to find some answers.
I think you know that I completely hear what you’re saying. When we go through a rough patch sometimes we have to keep our head down and plow ahead.
I started to comment on your gorgeous post the other day (“solace”)- to say that although it is so painful, it is one of my very favorites, along with the breath-taking one about holding Nik in the night and listening to the song from the NICU- know the one I mean? Anyway, I started to comment but just couldn’t think of a coherent thing to say and so I just didn’t.
XO
Always I am thinking of you and Nik and Niks dad. Just know that!
I think I understand about blogging less and commenting less during the hard times.
A lot of the time my blog is just pictures and a caption these days. I’m impressed with all that you do, online and off.
Sending you and your family some hugs and wishes for helpful answers.
I hear you and I want to tell you…
it’s okay.
We are here. We are here. We are here. You can disappear for days. You can vent. You can laugh. We are here. We are here. We are here.
we understand.
Just leaving a calling card to let you know that I totally understand your struggle. Hang in there…
Just a lot of hugs, empathy, and wishes that there was some way I could help. Yes, you say it so well: “It’s been more a case of not finding the words from simply being too drained and tense.” Yet the words swirling in my head eat at me and I know I would feel better if I could just get them out…vicious cycle, isn’t it?
Lots of support, love, and whatever else I can muster…
My heart is heavy for you, friend. Please know that your family is in my prayers.
We are here for you. Whenever. Always.
I was reading the quote you have in ALL CAPS at the top, about learning to dance in the rain—-that’s been a big part of our journey with Charlie.
And, not minding a lot of mud. But it’s gorgeous and sunny today.