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Archive for the ‘exhaustion’ Category

What counts is not necessarily the size of the dog in the fight – it’s the size of the fight in the dog. ~ Dwight D. Eisenhower

As we’re weaning Nik off of naps and one of his meds, he definitely gets more tired by the end of the day. I suspect it’s a combination of increased energy and alertness which leads to greater physical activity—which I didn’t think was even possible for this kid —and greater sensory input to try to process; the result is that Nik is exhausted at the end of the day.

Today is no different.

His slender frame encased in his “footie” pajamas —the sight makes me smile as it’s the last vestige of any sign of baby about this boy —Nik chirps and sings as he toddles on wobbly legs toward the stairs. He is so tired he nearly runs into the kitchen cabinet en route.

He spies one of the cats lounging on the back of an armchair but is too tired to give chase; he acknowledges the cat with a sing-songy “mah-mah-mah,” his way of saying “meow,” as he pinches and pulls his cheeks to make the sign for cat. He continues in a zigzag line to the foot of the stairs; his feet are barely able to propel him forward. “I think you’d better carry him, honey,” I say to Niksdad.

Unassisted, Nik begins his laborious ascent. On most days, he holds the railing and walks up with great confidence and speed; tonight, he crawls on his hands and knees like a thirsty man approaching a desert oasis. He pauses about midway; sitting back on his foot, he nearly tumbles but Niksdad is there to steady him. “Nikolas, do you want Daddy to carry you?” my husband asks.

Nik pauses and turns his body toward us; I expect him to reach for his father. Instead, he turns brusquely away. His determination makes me smile. Nik refuses to ask for help except in the direst of circumstances; this, clearly, does not qualify. He continues to crawl; his progress is much slower than before. He pauses to rest his forehead on each step before he climbs —as if he is gathering strength for his arduous task. You would think he is Sisyphus, pushing the boulder uphill, he is working so hard and is so determined!

Reaching the top step at last, Nik staggers into his bedroom and heads right to his crib. I am certain he will ask for help in getting into bed; he is so tired I cannot fathom that he has the stamina to do it in the usual fashion**.

Apparently, I am mistaken yet again. Determination thy name is Nikolas.

** Video of “the usual fashion” as of approximately three weeks ago:

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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?

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Wow, what a day it’s been! Lots of good and some bad all stirred together in a pot.

Up at the crack of o’dark hundred to meet my sister at the gym. Like a nervous traveler afraid to miss the flight, I woke an hour before my alarm. Um, that would be 3:30 this morning. UGH.

I’ve not been able to watch Autism: The Musical for a variety of reasons. When I tried the link today, while Nik was in for a nap, all I got was the #$^%$ preview video. ARGH!

Thank goodness for KC’s mom, Tina! She posted a direct link in her blog today and I just finished watching the movie!

I am am exhausted, weepy, moved beyond belief…and going to bed now. Will write more tomorrow.

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And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.

Help me if you can, I’m feeling down
And I do appreciate you being around.
Help me get my feet back on the ground,
Won’t you please, please help me?

John Lennon/Paul McCartney

There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.

Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mystery ailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.

When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.

Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.

Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.

So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotional music so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?

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Life isn’t about waiting for the storm to end;
It’s about learning to dance in the rain.

Jennifer over at Pinwheels commented by email on my last post (the fun video post, not the pathetic self-indulgent post) that “it’s just as it should be…sunlight always comes after the storm.” So why do I constantly feel like I am searching for the rainbows and somehow missing them? I mean, it rains then it shines and it rains again. Then the sun peeks out and the clouds roll in and …crazy emotional weather in my world these days!

Long story short, the “affliction” I mentioned before continues to rear its ugly head. Nik’s fever continues; he woke with a temp of 100.5 at 4:45 this morning. And today it was the fabulous Miss D (our favorite OT) who was treated to Nik’s frightening manifestation of mysterious pain. One moment he was playing happily with a shape sorter, the next minute he was screaming and writhing on the floor in abject distress. NOT behavioral.

This happened a few times toward the end of our session and right before our weekly playgroup. While Miss D and Miss T set up for the group, Nik played independently for a bit, happily pulling balls from the ball pit and tossing them. He’d toddle off to chase the balls and the return them to the pit, laughing hysterically the whole time.

Except for the time he tripped and slammed face first to the floor.

Needless to say, the morning was no longer much fun for either of us. My poor battered baby sobbed and wailed in my arms, bleeding from his mouth. My throat felt like a boa constrictor’s prey as I fought back my own tears and tried to calm Nik enough to verify that his teeth were in tact. Thank God for small mercies. He does, however, have bruises from his chin all the way up the center of his face to the bridge of his nose. They are a nice complement to the ones on each side of his forehead from banging his head against the sides of the crib each night.

You know it’s bad when you have the pediatrician on speed dial on your cell phone. Off we went for the fourth visit in as many weeks. The prize for using our frequent visitor points? More antibiotics for the dual ear infections, the second round in a month. Sigh…

Well, at least it explains the nocturnal waking, the low-grade fever that wouldn’t quit, and the screaming head-banging…for now. Until we see the ENT tomorrow and are told “No, he doesn’t have an infection; those pediatricians always jump the gun.” I kid you not, we’ve been told that before. But the good news is that the immunologist moved Nik’s appointment up to this Friday and has ordered some blood work. Well, the appointment is good. Bloodwork? Not so much.

And yet, through it all we keep finding the tiny pockets of joy (like Susan mentions here) and savor them like forbidden sweets filched from Grandma’s candy dish when the adults weren’t looking. They are all the richer for their hard-earned and unexpected sweetness.

And, truth, in poetic irony…it has indeed started to rain tonight. The thunder is booming in the distance and the rain has just started to pelt down on the skylights. (I love a good storm!)

Perhaps tomorrow will bring the rainbow after all.

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You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…

Rascal Flatts

It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)

On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…

I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.

This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.

Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.

Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!

I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.

I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?

I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.

On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.

Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?

Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.

Even this doesn’t seem to help me today. Sigh…

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