Little Bits of Life…

Life is pain, Highness. Anyone who says differently is selling something. –The Princess Bride

Days like today, I want to crawl back in my bed and hide until it’s all over.

Nothing particularly “bad” has happened. No real major meltdowns, or fantastic tantrums; only a few more appointments than usual scheduled over the next few weeks. But still, I’m feeling completely overwhelmed and exhausted. And today it’s hitting me hard.

The insurance is an issue again. We got the test results back for Erica’s neuro-psych testing, and they recommended a therapist to help her. We got signed up and scheduled with the therapist for the end of the month. But this morning, after her physical therapy appointment (which is in the deep recesses of the hospital so I have no cell service for that hour), I checked my voice mail to find that the new therapist doesn’t accept our insurance. They took us off the schedule and recommended a different therapist who does take our insurance, but who also has a waiting list. So we are waiting. And in the meantime, Erica’s teacher tells me she has been acting increasingly frustrated at school and, when asked, says she “can’t talk about it” and shuts down.

Breakfast this morning was punctuated with Isaac’s “well, like usual, the bottom of this egg is black and burned.” Makes me so thrilled that I cooked for him. (This also explains why my family has been living on leftovers for the last several days (could it actually have been weeks?): Dad has been super busy lately so we eat without him a lot, and why cook for people who will only complain? There’s just no point in wasting my energy only to have the life sucked out of me for my effort.) And we seem to be back to dealing with poop in his pants a few times a week, which I thought we had dealt with. That means it’s time to call the GI again and get back in, probably sooner than the appointment we have scheduled for June.

Cambria gave herself a black eye (well, according to her it was the baby cradle that gave her the black eye, but that’s really just a technicality) and had to have a tooth extracted last week because of a cracked filling and deep infection. She has generally been more and more unpleasant as the days go on. I don’t know if this is related to the physical discomforts or if we’re dealing with “growing into” the same sorts of issues we dealt with before with Erica, but so much is similar that my heart sinks at the thought of where this is all pointing.

And school ends in a month. Which means full days of sending all three to their rooms because they can’t seem to get along. Full days of listening to complaining about my less-than-stellar cooking. Full days of tearing out my hair begging for a sliver of emotional sunshine.

So back to therapy I shall go. And in to the doctor again to evaluate the meds. Because again, it’s just not cutting it. And there are too many days like today, where all I want is to get under the covers and close my eyes; to stay that way forever.

I probably would feel better if I cried. But there isn’t the time. And I don’t have the energy.

My heart hurts. My body aches. Deep in my soul there is a pain I can’t describe. A feeling that this may never, ever end. A dark, abiding fear that pain, sorrow, and isolation are my future.

I need something. Therapy, medicine, sleep, chocolate, sun, exercise… something.

Maybe tomorrow will be better.

It feels like whatever time I haven’t been spending driving carpool or cooking dinner has been spent at various doctor’s offices for the last several weeks. And I’ve got another full week of doctor (and vet – yay for the dog) appointments coming up. Now it’s one thing to have a checkup or two, but an entirely different thing if every appointment you go to results in MORE home maintenance, MORE medication to remember to take, MORE forms to fill out, MORE follow-up appointments, and MORE prodding and pleading with my children to PLEASE do what the doctor has asked of them. And then it’s a whole other thing when the appointments take the better part of a day each time – then I have the obligation to explain to the teacher (again) why my child is missing yet another day of school to go to yet another doctor appointment that can’t be scheduled after school hours, because these doctors are squeezing us in and so we take whatever opening they can manage to make. It’s simply exhausting.

I read an article the other day, detailing 7 things people don’t know about the parent of a special needs child (yes, I have a special needs child – you wouldn’t know it to look at or talk to her, but trust me – she is… my highly/profoundly gifted child is special needs at the other end of the spectrum from what you would generally think of as “special needs” but she deals with just as many issues because she is so far from the norm). I identify so whole-heartedly with each point made in that article:

1. I am tired. Being a parent is hard. It takes a lot out of you. But being the parent to a child like this brings a whole new level of exhaustion. The doctor appointments, therapy appointments, and home maintenance schedules are pretty much a constant thing. Add to that the 1.5 hour carpool ride home from her special school every day of the week and I’m literally exhausted at the end of every single day. There are more days than not where I wake up exhausted. Sleep is the only time I’m free from worries of the next step or the next place we need to go, which doctor to try next, which medication to try, which school to send her to, or how to help her understand what she is going through. Frequently, my sleep is interrupted by my worry and I have hours at a time during the night where sleep escapes me, simply because my brain won’t turn off and the worry won’t subside. It’s physically, mentally, and emotionally draining on a daily basis.
2. I am jealous. I listen to stories of your children, and how those children seem to want and need your love and help. And I see you with your family, out doing something fun like a walk or trip to the park, and my heart twinges. I want to be able to do those things with my child, but every time we try I pay for it. The consequences outweigh the fun and so generally we don’t go places or do things together as a family. But I want to, and that makes me jealous.
   
3. I feel alone. Even with the parents of my child’s intellectual peers, the people I thought would identify with me, I find I have only a small amount of common ground. And so I feel isolated. Our struggles are too different to compare with those of my acquaintances and therefore little of what we deal with goes beyond even my closest circle of friends and family. It is a lonely place to be.
4. I am scared. I don’t know what to do to help my child. But the responsibility is mine, as her parent. I must do the best for her that I am capable, without harming my other children and while still doing the best for them as well. The next “diagnosis” may or may not be something workable. And I don’t have any idea how many more years it will be before things will become generally tolerable. And what if I haven’t made the right choice? What if the right doctor was the one I decided to stop seeing? What if the right medication was the one we opted not to try for whatever reason? What if the school I send her to isn’t enough to meet her needs and she feels anxious and repressed (because the sad fact is, this child will never tell me about those kinds of feelings)? I am confronted with an endless set of seemingly life-altering choices, and in the realm of psychology there is no hard and fast answer or path. What if I choose the wrong one? And then comes the worry of how to pay for the myriad of doctors, medications, schools, and therapists. The money supply is very finite, and it is a constant worry that the next attempt will be more than we can afford.
   
5. I wish you would stop saying “retarded,” “short bus,” “as long as it’s healthy…” For my situation, this is more appropriated stated as I wish you would stop saying how lucky I am and how easy it must be to have such an intelligent child, or what a wonderful parent I am to have “taught” my child so much. I didn’t teach her. She wouldn’t/won’t let me. She didn’t need or even want my help. And it is all I can do to keep up with her, to keep her stimulated enough that intellectual boredom does not translate into anger and violence toward the rest of us. My child does not fit into mainstream society, especially on a social/academic level. And that is incredibly difficult to navigate, for her and for me.
6. I am human. I make mistakes. I lose my cool. I hurt when my child refuses my help or love or when she lashes out and harms me. I have my own hopes and dreams and desires that have nothing whatsoever to do with this child, but I often feel they will never be realized. I have days where I think I cannot go on, and then there are the (very) few times I feel that we are maybe heading in the right direction. I need love and support just as much as anyone else, though you may not know it by looking at me.
   
7. I want to talk about my child/It’s hard to talk about my child. I want to talk about things that go on in my home, but all too often nobody understands. Most people I meet/talk to/confide in have never dealt with a child as intense as my own, emotionally, physically, and mentally. This child is extreme. And that means we deal with extremes on a daily basis: from talk of depression and suicide to violent physical attacks to intense intellectual discussions, punctuated with drastic and often frightening mood swings. These are “normal” to us. And so, while I want to talk about my child because there is so much we are dealing with, it is hard to open up to people who can’t understand (no matter how much they might try) what we are dealing with. And so sometimes it is easier to just smile and say “things are fine” when you ask me.

Add to all that the facts that I’ve got 2 other children who each have their own set of difficult circumstances, I personally am dealing with my own (rather large) issues, and perhaps you can understand why I am so drained.

The most recent prognosis is one that will likely require years of therapy, and as such will only be productive if said child will be willing to work at it. The mere idea of another several years of therapy is in itself exhausting, not to mention the likelihood that a lot of the therapy will exacerbate several of the issues she deals with. It will likely get a lot worse before it gets better (if it ever gets better – I have my doubts).

And through all of this, my job continues to be keeping up the cheerful face. Generally, that cheer is a facade. You probably wouldn’t know it, but I happen to have quite a knack for fake-happy. And honestly, I don’t know how to be any other way. All too often it seems nobody really wants to know what’s going on. And, like I said before, it’s hard to talk about it. It’s not “normal” in the sense most people are used to.

So if you see me, and I seem a little less chipper than possibly you remember me, please know that I’m doing everything I can to make it through the day. I’m absolutely and completely exhausted.

I went out this morning and bought a new pair of shoes. The most expensive shoes I have EVER purchased, this pair is a new set of running shoes with which I intend to run a 5k next month.

I am not a runner. In fact, running has always caused me problems. I recall once in junior high running around the track behind the school, trying to run 1 mile in less than 15 minutes so I could waive my physical education class and instead take some other elective (probably a music or language class, or possibly seminary). I recall very distinctly feeling like puking the whole way around the track, all 4 times. I vividly recall the stitch in my side, the pain of my shin splints, and the way I fell to the ground at the completion of my mile, sure I was about to vomit, or at least pass out. I did manage to do that mile in 15 minutes (which got me a C and allowed me to waive the PE class and take whatever elective I was trying to make room for) but I knew that day that running was NOT my thing.

Fast forward 15 or so years, and a friend managed to make running sound like a good idea. Convinced me that the program, Couch to 5k, run on my iPhone, would make running a 5k doable. (She convinced me of this during a session of yoga, where I was unnaturally relaxed and therefore more gullible than usual.) So I forked over $2 and downloaded the app to my phone. That was 2 weeks ago.

Today, I went and dropped $106 on shoes, and then another $35 on shorts and a running top. I’m in the market for a good running water bottle solution. I bought a $20 armband for my iPhone. I’ve registered for the Boise Race for the Cure 5k next month (May 12th) and forked over $25 for registration, as well as another $15 for a shirt to match my team (Team Buffy). I’m into this now about $200, so it’s too late to back out.

I’ve run/walked 6 times now, going between 2.1 and 2.4 miles each time. Sometimes I go by myself, but usually I go with a friend or two. Sometimes I bring the dog (this is the only real exercise she’s ever gotten in her almost 1.5 year life) and sometimes I take the kids to a park to play while I run circles around them. Generally, I’m just getting out there and doing it.

And now I have these fancy new shoes. Shoes that were chosen because of the way they fit, not because of the color or the price. I didn’t even know how much I would be spending until I stood at the checkout counter and handed over the cash. Thank goodness it wasn’t as much as I had anticipated!

Right now, I’m supposed to be running. I was supposed to meet a friend at the park, with the kids, to run this afternoon. The weather is iffy, and it looks like it might rain, but it didn’t. But I’m not there. And that, of course, is thanks to the kids.

Sometimes I think that I can take them places. Sometimes I think I can do things with them, and we can go places and have fun, and it will be like we are a normal happy-ish family. Like we generally like each other, and get along. But usually I’m not that stupid. Yesterday was a wonderful example of why I just don’t take my children places. I took the kids with me to go running. We went to an elementary school – nice playground, good running track, and friends (for them and for me). The ride there was unpleasant (lots of complaining about how LONG it was taking (really kids??? Your ride to/from school is 3 times this long and you whine about THIS???) to get there) but bearable. The kids had a great time playing, and I had a great run with a few friends. But the ride home, well, that was another story entirely.

Erica picked a bad place to sit in the car. I knew that, as soon as I got in the car and saw where she was, sitting between Isaac and Cambria in the middle seat when she could have had the back to herself. Why? Who knows. I suggested she change seats. Not interested. But already teary, because “everyone is mad at me for no reason” – apparently, she had stepped on Isaac on her way in to the car, and then sat on Cambria’s seat buckle. Again, I asked if she wanted to move to the back. Still not interested.

Okay – fine – off we go. Heading home. And then the fighting starts. She’s touching me, he’s looking at my book, nobody is being nice to me, I hate you, I hate this, why did we go, and suddenly they’re out of control and there are tears and lashing out and I lost it. Snapped at them all, told them to be quiet, that this was exactly why I didn’t ever take them to do fun things, and that I wasn’t taking kids who act like this to do fun things. To which 2 of the 3 began cheering about how they didn’t actually want to do anything fun anyway. Yay! We hate doing things like this anyway! My response was “no talking until we’re home.”

Quiet, the rest of the way, except for the shuffling of hitting and glaring coming from the back seat.

By the time we got home (10 minutes, 12 tops), Erica was in no state to be around the rest of the family. She was snappy and mean and rude, and storming around the house yelling at anyone and everyone, slamming doors, cupboards, whatever. And again, I lost it. Sent her off to bed an hour and a half early. Told her I was done with the attitude and if she couldn’t be kind or at least civil then I would see her in the morning.

It was a lovely night.

So today, my friends and I decided to try running at the park by my house. I was done being mad at the kids. Even thought maybe we could try again and it would be ok. Not like it’s a 10 minute drive, so there’s no time for fighting and whining and being horrid, right? We just get our shoes on, walk over there, they play, then we come home. Easy.

Wrong.

The fighting and horrid attitudes started even before we made it out the door. And by the time the kids were in the car (because, well, walking wasn’t going to work for some people…) and I was about to get in, 2 of the 3 were fighting and in tears (the third had already been told she was no longer invited due to her nasty attitude). So I scrapped it. It just isn’t worth it to me to try and make this work. Another night like last night? Not interested. Another night of me being mad at the kids again just isn’t what I’m interested in. So we didn’t go. And I called my friend to cancel.

So my running shoes are sitting on the floor next to me, sad and forlorn. Waiting to be used. My iPhone is on the bed in my running band. I’m sitting here in my workout clothes. And it’s just not meant to be. Maybe later. Maybe when my husband gets home, I will go. If it hasn’t started raining yet. Leave the grouches here, and go by myself.

It shouldn’t be this hard to go running. When I was a teenager, I thought shin splints and side cramps and nausea were the worst that could happen. I just wanted to do something hard. Something that I never thought I could do. To prove to myself that I can do hard things, because I stick with it. Because I work at it. And because I can learn to like something if I find the right way to do it. But mostly because I wanted to do something with my friends. Because, well, I have friends now, and that’s really a big deal to me.

Maybe another time will be better. And maybe now I’ll really believe myself when I think I shouldn’t try to take the kids with me when I go running (or anywhere, really). It’s not worth it.

Pounding. Thumping. Screaming. Yelling. These are the background noises to my post.

It has been another one of those days. Possibly it has been another one of those weeks, but I think really it has just been the last few days that have been hard. I tend to feel that a small amount of unpleasantness lasts much longer than it actually does. I’m fairly certain what feels like a miserable week has really only been a miserable two days. Yet it feels so much longer.

It all comes down to perspective, I guess.

To me, each day like today feels like an eternity. Each tantrum, each emotional outburst, each physical altercation drains from my body and soul emotional and physical energy. And days when the hits just keep coming, days when there isn’t time (or energy) to replace what has been drained, I find myself in a sort of puddle. Every emotion just oozes from my being as though I were a sieve. I find myself empty, deflated, exhausted. The tears flow freely, for the will to restrain has gone.

This perspective of living day to day, seeing only what has immediately befallen me, has a way of driving all hope from my sight. I see little more than endless drudgery, endless pain, endless hurt. I feel powerless to change my situation. Hope is my comfort no longer.

Tomorrow is Erica’s testing. And then another two weeks and we will have results. Possibly suggestions, ideas, and (dare I hope?) answers. And really, progress has been made, and sometimes things seem better.

But then days like today happen, and it feels like we’ve slid halfway back down a mountain we’ve been struggling to climb for years. And I feel like I’ve got to pick myself and my family up and pull them back up the path. But I don’t have the strength. So I sit. And I cry. Because I can see how far we still have to go before we will reach the top.

But the part I forget, the part that eludes me on days like today, the part I don’t see after such a momentous downward slide, is how far up the mountain we still are.

It’s all about perspective.

I turn around in my mind, and look back on the days that are past. Look back on a child who wouldn’t allow praise or hugs. A child who was unwilling to entertain even the thought that I was proud of her. A child who would spend hours screaming her hate for me, and violently beating herself and others for no apparent reason. A child suffering in silence for weeks before admitting to a physical discomfort or asking for help. A child unwilling to be touched, unwilling to accept from herself anything less than perfection. A child unable to accept and show love. And then I can see that we have come so far. It still seems that the goal is out of reach, but maybe it isn’t as far as I thought. When I turn around, maybe we’re not quite as far down the mountain as I had feared.

And so, as each of my children struggle to be their authentic selves, and I struggle to help them find out what that is, I find I have to remind myself that perspective makes all the difference.

I am going through something of a personal struggle currently. Something that has been as draining to me as my struggles with my children; possibly more so. And I wonder if the idea of perspective would be helpful to me as well. The difficulty isn’t the same, and the parallels are hard to draw, but I’m certain that somewhere in the mess that is my life, there is a common theme. Perspective. The pain, anguish, and frustration I’m experiencing now, personally, feels like such a huge part of my existence. Like so much of my life has been and will be filled with this pain and difficulty. But I have to remind myself that this is only a small part of my existence. That there is more to my life than simply this.

I want so much to believe that there is more to my life than pain and struggle. To know and feel that I am more than mother and wife. That I am also a woman, a human, a person. A feeling, living, being. And so, while I detest the pain and anguish I face on a daily basis, I recall that these emotions validate what I need most right now: that I am. I am. And while that may seem obvious and self-evident, I have to remind myself of it today. Because today, I feel less. I feel drained. Exhausted. Spent. And who is there to comfort me? To dry my falling tears? To hold me and tell me that I will be ok? Times like this, when my heart is hurting and my body is finished, I find little solace in the emptiness. And so I must tell myself, again, that the pain and suffering serve to emphasize the simple fact that I am human. I can feel. And for that, I am grateful. The feelings are hard, and difficult, and painful, but they are there. I’m not so far gone that I am beyond feeling.

Perspective. It’s all about perspective.

Little stirrings. Small ideas. Tiny seeds of interest. But it’s scary to think of taking the plunge, of stepping out of my 9+ years of comfort-zone safety and actually doing anything about those little twinges.

School? Maybe. But maybe not. I hate studying for the grade. I hate passing the test to keep from wasting tuition money. I hate regurgitating, and worrying about getting the ‘A’. And I vowed to myself that if I ever went back, it would be to do something I actually want to learn about. Which brings me to the second issue: what would that be? What could it possibly be that I would want to learn enough about to go back to school for? To get an actual degree? General studies appeals to me – a major in a little bit of everything. But what can you DO with that? And that brings me to the question of my motivation. If I’m doing school so I can DO something because of a degree, I’m not sure that’s the right reason either.

Work? Maybe. But doing what? I’m good at… well… cooking, cleaning, bandaging, driving, breaking up fights, laundry, yard work, and on and on. That’s what I’ve been doing for the last decade of my life, and I’m pretty sure I don’t want to go somewhere else to do the very same things. So to think that someone would want to hire me to actually use my BRAIN… that’s a little intimidating. That grey matter up there is out of practice and more than a little rusty. And then there’s the stress, of having to be somewhere and do well enough to be worth keeping around. And the worry of what to do with the kids if I have a job. School is out for the summer in just a few short weeks, and then it would have to be daycare. And then what is the point? Because then any money I make would go to paying the daycare, and I’d still have the meltdowns every night from at least one of them from being overstimulated all day long. Sure, I’d get away, but would it be worth it? I’m not so sure. I’ve thought of delivering newspapers, or sticking flyers on doors, or something along those lines, but there’s always the drawbacks of weather and time frame (i.e. 3 am isn’t exactly my favorite time to wake up…).

Volunteering? Maybe. I’ve done that before, with mixed results. Sometimes I enjoy it, sometimes it’s just another THING I’ve got to do. Something else I’m committed to doing, and sometimes it just doesn’t fit in to my schedule, especially given how often we are in and out of doctor’s offices and my carpool schedule for the kids.

And the underlying problem, in all of this, is the issue of my attention span/interest. I have this horrible tendency to jump into things, full speed ahead, giving 300%, and then to crash and burn right as I’ve invested myself (financially, emotionally, whatever) just enough to make it feel like a waste. I have seen myself do this SO much that I know it is a very high probability that whatever I get myself into will end similarly.

And so I am stuck. Stagnant, unable to decide, and feeling trapped and unfulfilled. There is the nagging worry of not ever being brave enough to step out of myself and actually DO something. But I wonder, so much, if having a purpose that gives me meaning and fulfillment would help with my exhaustion, depression, depletion, and general happiness level.

There’s a nagging voice that keeps telling me that I could be happy, if I would just do exactly that: BE happy. And to a degree, I think that voice has a point. But I’ve tried this gig for years, and I’m just not seeing myself finding the strength to be anything any more, least of all happy. You can only medicate so much of that away. So it’s time to look elsewhere, and see what I can find. But I’m scared. And finding all kinds of reasons why I shouldn’t try. And feeling guilty that I haven’t found joy and fulfillment in my current situation. But I have given it everything. So much, in fact, that I find myself 30 years old and I don’t even really know myself. My oldest chose my favorite color for me, when she was 3, because I had no opinion. And that is a trend I’m ready to stop. I want to know who I am, and what I think, and what I want. I want to find something that has meaning for me – lasting meaning. Something to draw out the person I’m sure I must be. Somewhere, somewhere hidden deep inside, there is a person, waiting to find the light. And I think maybe, just maybe, it is time to try. But my courage is small. And I may just talk myself out of this all together. I’ve done it before.

Sometimes I wonder why I can’t just be ok. Why it is that I feel like I need some sort of recognition, some form of appreciation, some acknowledgement that what I do every day actually matters to people.

Tonight I’m angry. It has been a long day. A long day of medicine for my youngest, who has a horrible croupy-sounding cough, and a long day of attitude from my son, who has reminded me over and over during the course of the day that he hates me. And why can’t I just leave him alone? And don’t I know how much I make his life miserable?

And I’m angry. I’ve done this all day, and I was expecting some respite. That’s what I thought the weekend would bring. Yet it hasn’t. And my house is a mess, because I didn’t have the energy to follow through making the kids help clean it yesterday, and because I don’t have the desire to scrub all the toilets and counters AGAIN. Thank you, son, but it is just SO disgusting and I’m just TIRED of cleaning up after you.

And I find myself with a bag of chocolate over and over again. This can’t be a good thing. It never is. It has been worse lately. Worse than it has been in a long time. And I’m just angry.

I’ve been reading about the Holocaust. And listening to podcasts about the feminist movements, and how there is still so much ground to be covered. And it just makes me angry.

I want to feel appreciated. I do so much, but it is stupid, meaningless, mindless, often disgusting stuff. And laundry day is tomorrow. But the kids couldn’t sort their laundry today. So that fight will happen in the morning, which I’m not looking forward to. And waking up all night because of the croupy cough.

My ears hurt from my earplugs. And my stomach hurts from the chocolate. And my tongue hurts from biting it so hard yesterday (hard enough I went into shock – that wasn’t a pleasant experience). My skin is breaking out, again, because I’ve been so stressed and crazy busy lately that showers have been few and far between.

Is any of this related? Is any of it relevant?

Does it really matter? Does ANYTHING matter?

Tonight I’m angry. And it is keeping me awake. I want appreciation. I want recognition. I want more. I want.

And because I want, I feel guilty.

So much has happened! And in such a short amount of time, too.

Last Sunday, Kimball went under the knife for an emergency appendectomy. Thank goodness he made it through, and thank the high heavens for all the help and support we received from friends and family last week! Many meals and calls and child-watching by friends and family made the days surrounding the surgery go as smoothly as they could. He is recovering (slower than he likes, but recovering just the same) and life seems to be settling back into normal.

The levy passed in Boise, which means my kids’ school programs are NOT going to be cut. A guarantee that one of them (the most urgent) will remain in the program, and a high likelihood that the other will remain in as well. Finally allowed to apply for enrollment for my youngest, and waiting to hear back about whether or not that application will be accepted. Hoping to find a principal willing to work with us on her situation, but that remains to be seen. Just the idea of getting her in to the system is a big relief. Certainly not enough to allay all my fears, but it is something.

And then yesterday, the most encouraging news thus far. Took Erica in for her intake appointment with the tester doing her neuro-psych testing in a few weeks. A definite NO to autism/Asperger’s (which was a relief) and an inclination toward some improper brain connections formed as an infant relative to her ability to accept soothing, self-soothe, and generally regulate herself and her emotions. No solid answers at this point, but certainly some hopeful inklings into what is going on in this child’s brain. We will go through with the testing and see what we can learn, and what this doctor can recommend to help. She did mention that there is some crossover in symptoms which could lead people to suggest Asperger’s, but calmed our fears by ruling it out and proposing to rule IN something entirely different but so much more believable.

And amid all of this, we continue to function. Days turn into weeks, and the time passes. The kids are growing up, and I’m getting old (slowly but surely). Sleep comes fitfully, but at least it comes. There is hope that we won’t have to go through with behavior modifying medication for Erica. My medication change seems to be sufficient for now. There are a few hopeful things on the horizon; reasons not to give up. In spite of the difficulties, many of which are never enumerated here, life continues to roll on.

I’m thankful for the help and concern I’ve been shown, especially this past week. It keeps me going. Gives me hope in humanity that is so vital to my emotional well-being. Reminds me that, even though there are dark days, the sun does occasionally come out. I need that reminder, and I need the hope.

I’m sitting at Erica’s therapy appointment, waiting while she has her session. It has been a pretty miserable morning with her so far today. I don’t know what to do with her, or for her, or about her. The therapist says they will need to work on some anger management with her and also that we as the parents need to come up with a better discipline system, though she has no suggestions. What that will be, I don’t know. Nothing we try has an effect on her. She claims she doesn’t care about any discipline she is given, and sometimes I think that really could be the case. That she really and truly just doesn’t care. About much of anything at all.

It makes me ill to think of life going on like this for years to come. Makes me seriously feel like giving up now, because what is the point? Nothing we are doing is getting to the bottom of this situation. Nothing is helping significantly enough to make me feel like it is worthwhile. My energy is shot, and I’m exhausted just thinking about another day of this.

We started her on melatonin this week to see if that would help her sleep and thus help her attitude improve. Sometimes I think it might be helping, because she seems quiet in her room so much earlier at night, but I don’t think I notice a difference in her attitude or ability to cope with stress/anxiety. Things have been so bad the last few weeks that it doesn’t seem like ANYTHING is helping. The psychiatrist says if more sleep doesn’t help, then we’ll move on to behavior modifying medication. So he talked to me (and Erica was in the room) about some of the side effects of that medicine, including the possibility that it might make her dizzy in the mornings when she gets up out of bed. Just for my information, in case we do decide to start that medication before we go back to see him. So we’d be aware if that happened. That night, we started the melatonin. And the very next morning, Erica came down the stairs, walking very slowly and carefully, and said, “Is it just me or is the room spinning?” I took a deep breath, because I knew what was going on, and proceeded to explain to Erica that the side effect she was attempting to experience was not caused by the medicine we had just started; it was a side effect of a medication she hadn’t yet taken. And suddenly, the dizziness went away. Amazing the way that works.

She is manipulative and cunning. She is dramatic and intense. At some point in her life, these things may be beneficial to her, if she can learn how to use them properly. But right now, these traits cause many hard days and nights.

I talked with her teacher a few days ago about why she is out of class so much for so many doctor’s appointments. The teacher was very understanding and not upset at all – just wanted to know what was going on, and if Erica is ok. I talked to her (probably for the first time with this teacher – it’s hard to remember who I’ve told the gruesome details and who I haven’t) about the violence and anger we experience at home, about the high anxiety and stress Erica lives with, and about what we are trying to do to help her. It is still absolutely incredible to me that people who spend so much time with this child don’t know what we deal with. Erica holds herself together so much, and so well, and it just astounds me that she is able to do that. And dismays me at the same time, because that means we, her family, take the brunt of her negative emotions and actions.

I’m anxious to have the neuro-psych testing done. Ready to know whatever that can tell us. I hesitate to try the behavior modification medicine before we’ve ruled out finding a diagnosis from the psychology arena, but at the same time, I’m not sure I can handle another 6 weeks like this, waiting and trying to cope. That’s asking a lot, and I’m not sure I’ve got that much in me. And yet, though I feel this way, somehow I keep going, day after blasted day. I wonder how much longer I will be able to keep that up.

I wonder what it must be like to live in her head. To feel life the way she must feel it; to experience the world so deeply and so intensely that it causes so much distress. I wonder, but I will never know. I will never be able to understand any experience but my own, and that is the case with all of us. But maybe I could find more empathy, more patience, more understanding, if I had some idea of what it is like to be her. If someone could shed some light on her thought process or her emotional experience. I guess that’s what I’m hoping for from the neuro-psych testing: an inkling of what goes on in her personal experience. Someone who can help me understand what she is dealing with. Someone to give me the tools to help my child. Someone with some answers.

Yet another tantrum. Over the lights.

We had an appointment with the psychiatrist today. Talked to him about how the behavior is still an issue. Still seeing violence a few times a week, toward herself and others in the family. It’s a vast improvement over the several-times-a-day violence we used to experience, but it is still not good enough. We still have a ways to go. So we talked about helping her sleep better, in the hopes that with less exhaustion will come fewer outbursts and less violence. Starting with melatonin for now (which I’m putting Cambria on as well in the hopes that she will start getting to sleep before midnight and be less exhausted in the mornings; maybe more sleep will help cut back on her violent behavior). We’ll see if it helps. If not, then the next step will be a mild behavior modification medication. One of the side effects of the behavior modifying medication is that it makes kids tired, so that might help with the sleep issue as well.

It feels crummy to be treating the symptoms without understanding the cause, but at this point I don’t feel like there’s really any other option. We’ve done everything we could. My life and the life of our whole family already revolves around this child so much, and every week with her therapist I get a new list of things we need to do to make life easier for her. And I’m just exhausted. So we’ll keep doing the therapy, and keep dealing with the anxiety, and keep trying to accommodate her as much as possible, but I’ve got to get some help. If the sleep meds don’t help, then we’ll take the next (drastic, but necessary) step of behavior modification. Oh, how I hope it will make a difference.

So the talk with the doctor today included such things as “Try to be still and rest and relax after you take your medicine. Turn the lights down low and don’t get up and move around a lot.” Thus came the argument at bedtime over the lights. Mom wants her to use the bedside lamp. She wants the overhead lights on high. Ok, I’m willing to compromise. Turn the overhead lights down low. Not good enough – Mom wants them too low. So instead of communicating, she runs to the lights, turns them off, screams about how I hate her and how frustrated and exhausted she gets when she wants to do something and I tell her no. I told her I loved her, that I love her too much to argue, that all I want is to be able to help her but that she won’t let me, and then I left. And she screamed. And stomped. And punched things. And screamed some more.

I don’t know. Maybe it is asking too much to change more than one thing at a time. Today the changes were medication and turning down the lights. Maybe it was too much. Maybe the doctor appointment was enough to throw her schedule off for the day, and now I’m sunk no matter what because we’re “off” normal. I don’t know. I can’t keep guessing because there’s an infinite amount of things that really could be the issue, and I will never really know what happened. She won’t talk to me about it.

I feel so much like I spend so much of my time, physical and emotional energy, money, and resources trying to help this person who is usually absolutely unwilling to be helped. Partly because I want her to be happy, partly because I want my other children to be safe, but also largely because I need some calm in my home. I have spent YEARS dealing with this and I am simply, completely, and totally exhausted.

I get away from time to time. I do. I do things because I want to every now and then. I even have some pretty amazing friends that I’d call more than just acquaintances. And to top it all off, I’m on some pretty heavy-duty anti-depressant/-anxiety meds. But it’s not enough. And I’m sinking. Coming up for air a little too infrequently. The weights are just getting to be too much, and I’m just not strong enough to keep my head above water any more. And so today I made the call to my doctor’s office, and tomorrow I will go in. And we’ll change the medication. I’m maxed out on my current stuff, so I guess that means a whole med change. Not thrilled at the prospect of being in flux for months, but I’ve got to have hope that it can get better. Something has got to give. I’m so exhausted and just completely and totally drained in every way.

Sometimes I think to myself that if it was just one big thing, or maybe two, that I’d be ok. But there are too many enormous issues going on in my life right now that I just can’t seem to keep up any more. Things were tough when winter started and the weather changed, but I thought I could power through. And since then, more and more things have been piling up and I just can’t seem to make it work. This is too much.

I hope, with all my heart, that there are sunnier skies in the near future. That there are answers, or at least band-aid solutions to tide us over until the answers come. Because without that, I just might drown.

“Hey look – we’re going to kill ourselves!”

This is what brought me, at a full run, from my few minutes of quiet and dark in my room, following the ear-piercing carpool ride home from school today.

In Isaac’s hand? The butcher knife. Unsheathed. He and Erica were hovering around Cambria at the computer with it, gleefully proclaiming their intent to kill themselves.

Of course I took the knife. And put it away. And tried, in my calmest angry mommy voice, to explain to them that this was NOT acceptable, in any way, shape, or form. And proceeded to choke on the vomit threatening me – the physical reaction to the emotional jolt I had just experienced.

They thought it was funny. They had this huge knife out, and were messing around with it like it was no big deal. I didn’t scream. I didn’t even yell. Spoke sternly, yes, but hopefully in a way that didn’t make them shut me out.

Dear universe, must I now remove all knives from my home? In addition to putting locks on all my upstairs windows because of the repeated threats (and half-attempts) to jump out or push someone else out the window? And hover around my children at all times to keep them from hurting themselves or each other so much that one of them actually dies???

I feel ill. And highly anxious and stressed. There is no silver lining to this experience. No wonderful lesson learned or beautiful revelation. Only anxiety and frustration and a furthering of the depression I find myself sinking deeper into, day after day.