Damn Murphy anyway. I should have known better than to post all that wonderful “spring is coming, la, la, la” crap the other day. I might as well have stood in the middle of Fifth Avenue just daring the Manhattan cabbies to hit me as I crossed against the light.
Whatever it is that goes on in Nik’s head —and I mean that entirely literally —to cause such pain and distress is on the rise again. It’s been an ugly couple of days around here. Nik’s been Jekyll and Hyde, the master of the mixed message, contrarian extraordinaire. He wants me; he doesn’t want me. He clings to me; he pushes me away but gets upset when I leave his side. It’s no longer sweet and endearing. We’ve far surpassed bonding and moved right into the stalker stage.
And the pain. The physical pain that washes over him unexpectedly. While he’s playing or dining. While he’s watching Mary Poppins. It’s as if someone has stuck him in the eye with a hot poker. And Nik seems to want to blame it on someone —anyone —and I seem to be conveniently at hand. I can’t say I blame him, really. I mean, I’d like to be able to blame someone or something for the topsy-turvy days, the disjointed nights, and the bruises and tears. If I am feeling this way without the physical sensations Nik is experiencing, well, I can only imagine how he feels. Though, last night I did go to bed early with a migraine; I’ve not had those in nearly a year.
We’re back to the daily Advil habit to mitigate the worst of the pain —or at least dull it to a tolerable level. I hate when we have to resort to that, though; it really starts to wear on his stomach. Today he’s been clutching at his belly periodically. It makes me wonder if it’s the Advil or if it’s new symptom being added to the mystery ailment.
The irony is that Nik is making such great strides in so many areas; I just hate that it comes wrapped in such prickly packaging.
If I try to be really objective, I might be able to see that, perhaps, Nik’s sudden clingy, bossy, come-here-go-away behavior is an attempt at controlling something that feels out of control to him. A small measure of comfort when he feels ill at ease, perhaps? Maybe it is those things and maybe it is not. I wish he could tell me what hurts, what he feels and hears. What he needs.
Tomorrow morning Niksdad and I get the dubious pleasure of taking Nik to the sleep lab at our neurologist’s office; at 7:30 tomorrow Nik will be hooked up for a 24 to 48 hour ambulatory EEG. Thank goodness Niksdad does not have school tomorrow and will not only be around to help me in the morning, but will give me an opportunity to get out of the house for a bit by myself. The last time we did an ambulatory EEG, Nik was not walking; in fact, he had just learned to sit up a month before. I can’t help but wonder how Nik will respond to all the electrodes on his head and lugging around the backpack-recorder.
If there is a patron saint of parental sanity, please, please pray for me? For us?
I am so so sorry. The tone of your post reminds me of the venty sarcastic, “if I don’t try to see the humor in this somehow I am going to lose it” posts I do quite often. Hopefully you feel better just getting some of it OUT. I hope Nik feels better again, that tomorrow goes smoothly, and that you hit an upswing soon! I’ll pray for you guys, to whomever will listen!
know it too well—-if Murphy’d been a special needs parent, imagine what he might have come up with! having spent the past three days with a splitting headache (cold-induced), I’m sending you a warm cup of tea, a soft blanket, and a big big hug.
Thinking of you. I hope getting some time to yourself will help a little bit. Poor Nik. Pain is a hard thing to handle. I hope you have some answers soon.
Oh no, I hope, I am praying, that the doctors can get to the bottom of this pain of his. It is the hardest thing when your baby is hurting and you can’t help him and he can’t even tell you what it is that hurts. I know that it is so hard when Andrew is in pain and he can’t tell me what hurts. Sending big hugs and prayers your way.
Oh, good luck tomorrow, really. I hope he handles it okay. Well, you are probably on to something that his hot/cold with you has to do with feeling out of control. It’s also a part of typical development (that has driven me crazy – twice!! – no wonder i’ve lost my senses!!) and it struck me that perhaps Nik is going through it now (maybe in conjunction with life feeling out of control and wanting some control and independence?
I’m so sorry that this is continuing and it so unpredictable. Bless his heart and yours. Good luck tomorrow…
Good luck with the EEG. I am sure that will be a challenge. I so hope that something shows up!
I am so sorry things are on the rise. We are just staying steady here…no real improvement but nothing getting worse either.
Does it seem like there are any triggers to these episodes? If he is like Maizie it probably seems like there is no rhyme or reason. Everything seems to be a trigger. It is all so frustrating.
I hope that applying the electrodes is calm for him and not too painful. Maizie had a very difficult time with that part. I will be saying some prayers for you all.
If you are serious about the Patron Saints we have often asked Saint Rita to pray for Maizie. She is the saint of Impossible Causes.
A backpack um… Good luck.
You are doing such a great job as a parent with all that you have gone through.
Keeping you in my thoughts
I’m keeping good thoughts for all of you tomorrow. Hoping it goes well, but also hoping you’ll get some answers.
xx
k
Oh, I’m so sorry to hear about this. I will be sending lots of prayers your way, for Nik’s pain to go away, for some answers, for all of you.
I’m sorry to hear this. Good luck with the EEG. I hope he develops a case of sit-still-itis while it’s being done.
Hope it goes great. Lots of hugs for you and Nik and Niksdad. Let’s get some ANSWERS!!!
***HUGS***
lots and lots of hugs, for so many reasons!! Good Golly!
I know exactly your pain of having a kiddo who is not able tell you what hurts. I wondered what would happen if you gave him little pictures of pecs, like a “stomach ache” or a “head ache” and asked him what hurt…just wondered if he could look at the choices and pick one. It would give him a very real means of communication to point to it receptively. just a thought. We are thinking of you!! Keep us posted!! XO XOXOXOXO
We’ll be sending you nothing but happy thoughts. Love from California.
Good luck tomorrow. I’m so sorry there’s been no reprieve for you guys…
Poor Nik, poor you.
Hope all goes well today for you.
I’m no patron saint, but I’ll pray for you nonetheless.
Sorry you all are having a tough time. This parenting gig gets a but overwhelming at times, eh?
I hope that the application of the device has gone smoothly, and that by now you are sitting in a coffee house somewhere sipping a latte and reading some trashy escapist novel.
Thinking of you, and sending prayers and hugs.
Joe
OF COURSE!! praying! sending! visioning! secretizing! all of it. i’m sending all of it out the window and down to you all!!
it sounds VERY hard, very trying, not to mention deeply worrisome. i am so very glad Nik’s dad will be with you in the morning, for support, partnering and giving you a much needed breather.
sending xxxx
So sorry to hear about Nik’s painful episodes again. Keeping you all at the top of my prayer list.
Hopefully the applying of the electrodes went well. From the looks of things, in the picture of your most recent post, he is handling it rather well at home! Thumbs up!