Little Bits of Life…

Several people have been calling me, texting me, emailing me, and generally trying to get my attention. And I’m summarily ignoring them all, for a variety of reasons. But, for the ones who follow my blog, at least this post will give you a bit of a feel for what’s going on with me and mine lately, and why you’re not hearing back from me.

School is out for the summer. That always gives me a moderate anxiety attack because I’m never sure how the kids will handle being home with each other all day, every day, and even how I will handle them being home all day, every day, with me. But so far, the summer has gone well. Not perfectly, but much better than I had expected.

We applied for enrollment for all our children at a local charter school and all three were accepted over the course of about 4 weeks. This means all three of my children will be attending a single school. Only 10 minutes away from my house. And they will ride the bus. I am ecstatic. But even more so because this school will let them work at their own pace, and will keep them challenged, allowing them to learn without feeling slowed down. This is fantastic, because two of my children were ejected from the GATE program in Boise because of budget cuts and policy changes (since we were open enrollment we were pretty much last in line for a spot in the program). Also, Cambria is in afternoon kindergarten, which means she doesn’t have to wake up early for another year (which is really a good thing) and will leave me free to *gasp* go to lunch sometimes with my friends or my husband. The new school also has a chess club that all three kids can be members of if they are interested (which at least 2 of the 3 are). AND the new school is K-12 so we’re in for the long haul, if that’s what works out best for our family.

I’m back in therapy. It’s been really good because I’ve found a therapist who has personally experienced a large number of the issues I’m dealing with. And she’s on my doctor’s case to keep the meds increasing until I’m finally in a good place. The insurance, of course, isn’t covering it (when have they ever covered my therapy?) but she’s giving me a break on cost because she’s awesome like that.

We are still waiting to get Erica in to see a new therapist. The insurance has denied every service we have tried to get for her for therapy lately, and they are unhappy about the latest doctors we were recommended, so we are on a (slow) waiting list for a doctor that the insurance WILL cover. But in the meantime, she is doing relatively well, especially given that it is summer and she is changing schools in the fall.

I had a birthday earlier this month. Turned 31. My husband and kids asked me what I wanted, and for the first time in a very, very long time I had a really hard time thinking of anything, aside from relaxation and time. They gave me some pretty great gifts (including a jump rope that Cambria picked out herself), but the best thing about my birthday this year is that things finally seem to be going better as far as my mental and emotional health go.

The therapy and the medication have helped a lot. The kids being out of school (and therefore no more carpool driving for me) has also helped a lot. I’m not sleeping well, and the sleeping pills aren’t really much help, but I’m functional and that’s a lot at this point.

I have cut my life back to bare minimums. I am doing very little that isn’t absolutely necessary for survival. I rarely (if ever) cook, which means that my family eats a lot of macaroni and cheese, ramen noodles, sandwiches, and cereal. I’ve given up the “extreme couponing” that I’ve been doing for better than a year. I hired a cleaning service to come clean my bathrooms and kitchen every other week. I’m reading a lot of suspense thrillers. I help the kids clean their rooms pretty much any time they want me to, and I do the bulk of the work. I’ve stopped fighting with my family about cleaning, and I just clean the house  myself these days instead of asking for or expecting their help. My church calling is minimal, and I am pretty laid back about planning/executing said calling. My phone rings and I ignore it. People email me and the emails sit in my inbox, piling up. I read them, but don’t respond. I sit on the couch with the kids a lot, reading or playing Angry Birds on my iPhone. We play the Wii together occasionally. I take them swimming occasionally (when my friends are going too) and we do a lot of laid back, un-stressful things.

In some ways, I’m feeling the best I think I ever have. I’m enjoying my children, enjoying myself, and enjoying my lack of obligations. Finding happiness in small, unimportant things, almost on a daily basis. Stress level has gone down overall, and I’m doing a better job being kind to myself.

Yet in some ways, I feel much, much worse. I feel like I have no motivation to do anything. I feel like I have no interest in anything any more. I have given up all my hobbies (aside, I guess, from reading for pleasure which is a hobby I have recently picked up again), and I have piles of things from previous hobbies that I no longer want or need. Hundreds of dollars of expensive supplies that I only recently purchased, that I have no intention of ever using again. And I’m frustrated by that. I’m tired, because I’m not sleeping terribly well, and I get headaches pretty constantly. My jaw has begun to ache and click, which my doctor tells me is because I’m probably clenching my jaw all night long. My entire body aches from tensing every muscle all day long; I have to consciously remind myself to relax all my muscles or I spend hours at a time tense and tight. People I want to talk to, people who call or email or text, I can’t find the strength to talk to. I feel myself crawling into a shell some days and wonder if I ever will have the energy to come out.

I’m dealing with a host of mental health issues as well as a lot of personal awakenings, which have come together to really change my perspectives and attitudes. I’m letting go of a lot of things that have made me miserable over the years, and trying to let go of the ones that are still hanging on for dear life. I’m working hard to figure out what I like, what I want, and what I believe. I’m doing things because they matter to me, not because I’ve been told to do them or I’m expected to do them. I’m finding out that I am a pretty decent person, even if I’m not following every single (often conflicting) rule out there in the whole entire world.

My doctor and therapist have given me a veritable alphabet soup of diagnoses, and the medication and therapy have been helping a lot to get those under control (or at least to make my life bearable and manageable again).

Until and unless I find my motivation again, posts will be few and far between. My Facebook page has become pretty dull, and my Google reader has been pared down to a very select few sites I’m still following. All this has helped to counteract the fact that my brain is seemingly full-steam-ahead, all the time. At some point, I hope, the pendulum will swing back the other direction, and then maybe eventually I’ll find that happy medium.

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.