Monday, April 22, 2013

The sum of the Parts

Part 1
In an emergency situation, I'm a ROCK STAR. As soon as shit hits the fan, an eerie calm comes over me and I'm able to think logically and rationally while everyone around me is in total meltdown. In times of crisis, I get the sense that everything around me is in slow motion and I'm better able to dodge the bullets coming at me (I'm channeling my inner Neo), but put me in a longterm crisis situation and I start to implode and all areas of my life fall to pieces.  My issue is, that if I can't fix something right away, I can't deal with it. In this scenario, everything around me is moving in slow motion, but I'm passively watching it all turn to shit instead of taking charge and making things right. I can't fix my kid, I can't even find someone to help me fix him, some days I'm not even totally sure what is wrong with him. I'm not coping with this well. Well, I'm not coping with this at all.
Part 2
I have a depressive personality. Some people who know me can not be convinced of this, but if they could see inside my head, there'd be no argument.
I've had episodes of depression, all of which I've refused to be medicated for.
I don't refuse medication because I'm against it.  I refuse it because... I like being depressed.
You read that right, but I should clarify.
I don't wake up in the morning and hope to be depressed that day. I don't want to feel sad and hopeless and otherwise out of commission, but I also can't resist the feeling when it calls for me.
I don't think it's much different than a drug addict's relationship with their drug/s.  You know it's bad, you know life is better without it, but you can't resist indulging in it.
The good news for me is that I've learned to cope with this part of me, and I'm successful enough that most people aren't even aware of the devil sitting on my shoulder, telling me to jump into the abyss.
The bad news is that if my life is in crisis, (which it is right now) I lose all ability to cope with this part of me. This is very bad news.

You do the math:
Part 1 + Part 2 = not muy bueno.

I'm not suicidal, or homicidal or a danger to myself or others, but I am inching ever closer to the edge of a cliff I've jumped off many times before. With each day that passes I lose the will to stop myself. Historically, my kids have been the reason I snap out of it. I don't want to be that mom, but when I talk myself out of it I'm never saying "no, you can't do this".  My internal dialogue is more like "soon enough, you can jump." I do realize this is fucked up in more than a few ways, but the beauty is that I don't care.

Friday, April 19, 2013

The notion of being a "grown up"

I remember the day, in college, when I first glimpsed at the notion that the invisible line between being a child and being an adult had always been a figment of world's collective imagination. I'd always assumed some sort of enlightenment would reign down on me so I could acquire the secret knowledge of "grown-ups" and move forward with my life, but the ridiculousness of that epiphanous assumption slapped me in the face like the hand of a disapproving mother. Since then, I've been confronted, numerous times, with the scary reality that being older doesn't really mean you're better equipped to deal with life.
The truth is,  though the world may see an adult and expect you to behave as such, you're never really a "grown up" in your own mind.  
You're always just the person you've always been with no more answers than you had before, there's no unfaltering foundation upon which to lay the confidence of your decisions, actions, knowledge, etc. 

You're just surviving, and sometimes that comes with happiness and easy decisions, but other times there's darkness and moments so difficult to navigate that you'd rather just..not. I keep finding myself slipping into unnavigable territory because being a "grown up" is too cumbersome. 
The caveat here, though, is that I'm trying to navigate this with my child when I don't have any more of an idea what the future holds than he does.  
He is struggling with a difficult situation, a situation that feels more than unfair and disgusting, and I have to be the grown up. 

We are struggling.

He needs me. I have to cross that invisible line and be the strength he needs. I am supposed to have an answer for him when he asks me why he should care about living if his life is being fucked over by his own brain. 
How does a "grown up" answer that question?
 Keeping in mind that the "grown-up" in question here is the one who made him.

I made him. 

Think about that, 

my body made this child who is being attacked by the faulty wiring in his brain, 
and now I'm supposed to tell him that it's going to be ok.

The irony is that it makes me want my own mother to cross that invisible line...I want her to be the grown up and fix it for me, so I can fix it for him.

The notion of being a "grown-up" is a fraudulent one, 

and I feel duped.

Sunday, April 14, 2013

Fu$K, Sh*t, C^ck! Tourette's SUCKS

It's been awhile...
get over it...

So my 12yo son has Tourette's Syndrome, I've written about it before and I wish I could say things have gotten better since then, but that wouldn't be totally true.
I've finally realized that I must accept the fact that we will be living with this for awhile, if not forever. I'm trying to just go on with life and learn to deal with other people's ugliness (you know, the staring, the laughing, the videoing, the complaints).  I'm trying to focus on the positive of the situation, i.e. my son still lives with the notion that things will be OK, but some days dealing with TS just S.U.C.K.S.

It's one of those disorders that sneaks up on you.  Just when you think you have things under control, a new, more life altering tic appears, and you're flung back to the beginning of the race. Recently we started with the cussing tics, which I had been so thankful that we didn't have, but we learned to deal and things seemed to improve.  Today though, the cursing turned to racial slurs...yes that word, and now I'm scared.  I'm scared to let him go to school.  I'm scared to let him go anywhere.  I have had more than one family member laugh at his inappropriate cussing, but no one is going to laugh at this.
He's going to go out there and get his ass kicked, and I won't be around to explain that he isn't a racist.  He's so far from it...He has no hatred or intolerance for anyone (excluding his brothers, and the willfully ignorant).

I worry that I am not made of the stuff it takes to deal with this.  I worry that I'll be the one to crumble and he'll be helping me.  I don't want to be one of those family's looking for more initials to diagnose my kid with. I just want this fucking disorder to leave my kid alone. I want to be able to keep it in perspective and be grateful that it isn't terminal or physically debilitating (though it could be the latter at some point), but right now I'm stuck in this pissed off place.  People have praised us for our strength in dealing with this, he's the only one with strength.  I just try to time my face-in-the-pillow-screaming-fits so that no one can see. I'm such a wimp, I don't deserve him and he doesn't deserve Tourette's!!!

Sunday, January 22, 2012

Flash mob sob...

I was recently invited to be part of a flash mob, (I should clarify that I wasn't personally sought out for this flash mob, it was more of a general friend request from a friend of mine). Unfortunately, I had to decline for so many reasons, but it did peek my interest in flash mobs in general. I, have seen them on TV before like this one on Oprah or this one from Modern Family, but it wasn't until I had seen several that I finally took notice of the effect they have on me...
The really good ones make me cry... One of the reasons that I didn't initially notice was that my eyes tear up at a lot of things lately, but none are quite as consistent as the 'flash mob sob.' (sob is too strong a word really).
I am not sure why it happens to me, I want to believe it's because I am overwhelmed by the power people can have when they work as one. I'm always amazed when large groups of people unite for a common purpose, it ALWAYS gives me goosebumps. But flash mobs are more than that. It's a group of people who have come together, maybe to make a statement, or to put a smile on other's faces, or to inspire, or just for fun, but I'd be hard pressed to find a more joyful way to make time stand still, to force others to stop the business of life and just be in the moment and enjoy, for a brief time, the human experience. Onlookers almost always stop and watch and cheer, though I'm sure this is diminished with the number of flash mobs experienced by the audience members (but really what are the chances of experiencing multiple flash mobs?).
Obviously I find them to be a pretty powerful experience, so I guess it makes sense that they cause me to emote in such a way. Of all the things that don't evoke much response from me, I'd have to admit that I'm a little embarrassed that I react this way to a group of dancers. I'll just choose to believe my reaction is evidence of my deep connection to the human experience, to the power of a group to impact life in a positive way, to joy for the sole purpose of joy.
BUT, It's also possible that my reaction is a result of my inability to dance...
Either way, I'm adding "witness or participate in a flash mob" to my bucket list.

Tuesday, December 27, 2011

I love presents..

No, really, I do. I mean, I REALLY love presents. Not just getting them either, I love giving them, wrapping them, receiving them, watching others give and receive them, etc. etc. I just love presents. One of the reasons I couldn't get into the holiday spirit this year was because I had decided, for many reasons, to simplify my life and give out only gift cards. I do credit this decision for saving my sanity, I needed things to be simple since I am THAT close to a mental break, but it still kinda deflated the whole joyfulness thing (although, I think the recipients of my gift cards were rather pleased).
Personally, I do enjoy the gift card, I like having the power to go choose the things I want for myself, but what I love even more is receiving something that someone else picked out just for me. Just knowing someone spent time thinking of something they thought I would like makes me feel all warm and fuzzy. Once I have been given a gift, I will always remember who gave it to me and I will think of that person when I am using/wearing/looking at the gift...(see I can be deep and meaningful)
I am sure I place too much importance on what a gift says about my relationship with the giver, but at least I acknowledge that! This year, however, my love affair with presents has left me a little befuddled. For the most part, the gift giving/receiving went as planned, and I got some very thoughtful gifts for which I am grateful, (I can't say the gifts I gave were thoughtful because although gift cards are many things, thoughtful is not one of them). But, at one of the family Christmas gift exchanges I attended, I received two gifts that left me scratching my head.
The first was a box of sugar-free chocolate covered almonds. To me, this gift says many things which are not limited too:
1. When we stopped at Walgreens, on the way here, this was all they had left.
2. Hey, you're so fat, we thought you could possibly be diabetic so we went with the sugar free.
3. We hate you.

The second gift I got was a pair of tarnished, silver earrings that look like giant insect wings. Maybe a dragonfly, I just don't know. This gift says so much, like:
1. Your face is so hideous I thought you could distract people with a giant pair of wings hanging from your ears.
2. I bought this for someone else, years ago, and forgot to give it to them, so SCORE for you.
3. I don't think enough of you to even try to hide the fact these earrings have been sitting in the back of a closet for years. The tarnish will come off easily and you will be so purdy.
4. This will look so good while you're petting your 32 cats.
5. I hate you.

I hate to seem ungrateful and there is a decent chance that no one saw the amused indifference on my face. I mean, a gift is a gift and I am happy just to be thought of...I'm just not sure I want to know what people are thinking when they think of me...
I guess I'll go drown myself in a box sugar-free chocolate covered almonds, I have some of those you know!!!!

Thursday, December 22, 2011

Watching it go up in smoke...

Well, Christmas is two days away, and honestly, it couldn't feel less like the holidays around here. I'm pretty much hating that other people are happy and joyful right now, and I'm hating myself for not being able to make it all ok for my kids. I hate that they may look back at this Christmas and remember nothing but SUCK!!!
What had happened was...
My husband has had a bad back for most of our relationship. His back will go out, and then it will get better. That is just the way it has been for the last 11 years or so. So, when his back went out this summer I really didn't get too concerned. The problem is that his back is still 'out' and it has been about 5 months.
Right before Thanksgiving, her decided to cash in his 3 months of short term disability to focus on physical therapy and try to get better. One of the great things about his job, and there are many great things, is the fabulous benefits. He gets 3 months of fully paid leave, then his pay goes down to 65%. The 65% thing is scary, but we could manage it for awhile...
He has seen SEVERAL doctors, neurologist, neurosurgeons, orthopedic surgeons and now a pain management Dr. and they have almost all said the same thing, patience and physical therapy. We recently went to a Dr. who is recommending ALIF surgery, also known as spinal fusion, on the two 'bad' discs he has. This is major scary surgery and we've had a 2nd opinion with a Dr. who thinks he should wait it out a bit, but my husband is fixated. He is thinking this surgery is going to 'fix' him. This is despite the fact that both the first opinion and 2nd opinion are telling him that there is no way to tell if it will be the fix or not. We don't even know if the insurance would pay for it, so it is possible that it may NEVER happen anyway...
The real problem is...
My husband is not working. There is also no way to predict when he will be able to get back to work. His job is only guaranteed for 6 months, after that they do not have to give him his spot back. If he continues with the PT he can go back as soon as he feels good enough. If he has the surgery it is at least a 3 month recoup. period. His drop dead date is May 11th. which seems so far off, but really it isn't. It is ironic because he found out he had the job on March 11. He began on April 11th, so it just seems appropriate that he could lose the job on May 11th.
Here's the thing...
He LOVES his job. It really defines him in a lot of ways. I cannot even make myself imagine him without it for sooooooo many reasons. First of all he makes good money. Money we depend on, money we have based major life decisions on money we NEED to get by. I know money isn't everything, but it is definitely something!!!! And the benefits, he could have comparable benefits if he stays in the same industry, but it scares me shitless to think we could lose everything this company does for our lives. I mean we pay $120/month for awesome health insurance for the entire family, who gets that???? It is a shift work job, but that really works for our family. My husband has so much more time with the kids than he would otherwise. He is so close with our 4 year old because they spend all his off days together, he's off 6 months out of the year... He's almost always available to go to their school or to get them in the afternoon, etc. etc. There are drawbacks to the shift work, but for us, the benefits far outweigh them.
When it comes down to it, I know that no job is more important than his health and happiness. I get that. I want him to feel good and be capable of the life he wants more than anything else, BUT I am SCARED. I am scared that we depend on his back to support us because I make less than half of what he makes, and now we may lose everything. There is no plan B. I can't stop crying and stressing and worrying. I watch his every move to see if he looks better or worse. I study his facial expression for any sign of hope that he is improving and on the days he isn't I can hardly take it. When I am clear headed I can rationalize that even if he loses this job, he is still very capable of finding another good one where he will be happy, assuming that he gets better...BUT what if he never gets better? Then what?

Friday, September 16, 2011

The "T" word.

I'm not sure if blogging about this is the right thing to do, but writing is how I process my thoughts and feelings, so read if you want and judge if it makes you feel better. This is real life, not some sugar coated version of things that I am hoping to remember later. If you can't handle that "X" out and don't come back.

My oldest son has been diagnosed with Tourette's. I won't get into the details, just because it is boring, but I'd be lying if I said that I wasn't devastated. I have cried everyday for over two weeks now (even before he was officially diagnosed, I knew). I want to help him, I want to make it better, I want to be able to crawl into his brain and flip the switch that makes him tic. I can't, and it KILLS me.
Apparently, his is a pretty mild case, but the future is unknown. I have spent many hours reading about Tourette's and though it does seem that once you have it it is there to stay, it also looks like, as you move through adolescence, it gradually gets better, for most people, and the tics become fewer and further between. The version of Tourette's, where people are randomly cursing or yelling out words is actually very rare, a fact I'm finding A LOT of comfort in.
I hate everything about this.
I hate that I know people will read this and be grateful it isn't them and their child. They will go and kiss and hug their tic free kids and thank god for their good fortune. I HATE them for that. If I believed in god I'd be so fucking pissed off at him right now. I don't want prayers or support or pity, I just want to rewind 3 weeks. To go back to the time before he started having all these crazy tics. This is so fucking unfair.
I want to be a rock of support for my child. I want him to feel loved and cherished. I want him to know that he has Tourette's but Tourette's DOES NOT have him. I want him to love himself. I'm so fucking scared that I do not have the right tools to help him deal with this. I am so disappointed in myself for the way I've reacted to the news. Of course, I haven't let him know I'm feeling this way. I am putting on a brave face for him, but he knows me well enough to know I'm sad.
I try to only cry when I am alone. Car rides are the worst, as soon as I get in the car by myself I just go ahead and put on my sunglasses because the tears are inevitable.
I have cried myself to sleep every night, if I wake up to pee, I cry myself to sleep again. I wish I could take his tics and give them to myself. I'm an adult with a solid self esteem, I could give a fuck what people think of me, why does this crap have to happen to a child who is entering the one of the hardest times in his life, junior high?!?!? It is so fucking UNFAIR.

I know I sound angry, I am. I can't release the feelings anywhere else but here on this blog. Feel free to judge my reaction, I really don't give a shit. I am feeling sorry for myself and my son. I'm sure one day I won't, but today is not that day.
I know this isn't the worst thing that could've happened to us, I get that. But that doesn't change the fact that it really, really sucks!