Yes, I listen to music 24/7. Why the fuck not?
Wait till I’m done dancing… hard to type. Alrighty. dance time over, now a song that makes me cry. Nice. Why do I DO that? I make the playlist. Masochist.
I am still wading through insurance bullshit. I finally think I have one, and WHAMMO – some minor detail that is not minor at all. If by minor you mean Game Changer. I found one that is perfect. Except the fine print makes that plan NOT eligible for the postal discount – so it’s not paid at 75%. So it’s $600 a check. A check. Every two weeks. Fuck you and your mama. I ain’t paying $1200 for health insurance. BTDT, ain’t going back. So, it’s the union plan for me. SHOULD be fairly cheap for fairly decent insurance. When I am full career status, I get the other one discounted as well. Something to work for, I guess.
I feel better today. About my boy and his Duchenne. Not great, just better. Just have to release the …. pre-grief …? … from time to time. It builds up so quickly.
I need a nap.
To break the same heart with the same shitty diagnosis over and over again.
Mar 2010 – Doc tells me some bullshit. My heart sinks at the look in her eyes. I know it’s bad.
March 2010 – Driving home, Jay reads to me from the Internet about Duchenne. I almost wreck my car. I think I have my first panic attack.
March 2010 – We tell the older kids. Their breaking hearts breaks mine all over again.
March 2010 – telling relative after relative, friend after friend…no one takes it well. i match them tear for tear.
March 2010 – initial test results come back – extremely high creative levels. indicative of duchenne. I think of getting in bed and not getting out. Ever.
April 2010 – lab results return – positive for duchenne. My whole world crumbled. There just aren’t any words to describe the feeling you get the moment you find out –for sure — that there isn’t a fucking thing you can do to stop your son from deteriorating in front of your eyes over the course of the next 10-15 years if you’re lucky.
Do I sound crazy or bitter? I am.
May 2010 – More results from dna testing – Deletions 45-52. Whatever the fuck that means. I know now what the fuck that means. It means my son is very close to having a medication that can slow his progression, only so far it’s only available to kids who can walk (in other words, kids that they can measure progress with). As soon as it is approved, he can get it supposedly, but that’s years in the future. I don’t know what our future looks like.
Broken heart every time he falls. Every time he breaks something. Every time he loses another function. Every time he cries because he can’t do something anymore. Every time he coughs or wheezes or can’t catch his breath. Every time we have to sleep in shifts so someone can make sure he’s breathing ok. Every time he searches the internet for more clues to his life. Every inch he gets closer to finding out one day that …. well, he’s going to find out one day, and I’m going to have to comfort him. I don’t have any magic words. I don’t think I’ll have any words at all at that moment. Just a broken heart.
I cannot get this song out of my head. Cannot. Repeat for weeks now. Usually happens, but for days at a time. If I’m not listening to it, my mind is playing it over and over.
all i really know, you’re where i want to go….
That movie ending stayed with me for awhile too. I get so fucking sad for anyone that feels like the best thing they can do in life is to die. How utterly tragic and really fucking sad. And the babies killing themselves nowadays! 11 years old, 14 years old, 20 years old ….. What the fuck? It would be easy to blame the parents for not being in the kid’s life or whatnot, but when it comes down to it – it’s the kid’s choice , not the parent’s. I raised 6 kids basically the same way – I worried EVERY FUCKING TIME that my sensitive kiddos went into emotional overload that they were going to go off and kill themselves. Ask my husband. Drove him insane. But I could ‘see’ it. I could see them being that upset that they could possibly see no other alternatives – it doesn’t take much to come to that conclusion when you are a teenager and you really don’t have all that much in your life to begin with. One bad week of being bullied or teased or getting dumped by girlfriend or getting a bad grade or getting grounded or a broken xbox. Then add mama getting on to them for whatever reason? Shit, I could see a bad couple of options, and in one of them – “I” don’t make it out alive either. Fuck that. My kids were basically on suicide watch when ever I even barely suspected that they were a tad unstable in the emotions department. Bana was young and cute and I would use her to check on them – she’d bring her tea set into their room and give them juice and cookies. I would come in and ‘save’ them from her tea party, and then I could judge by talking to them whether things had cooled down or not. Telling ya, I’m a human barometer when it comes to emotional reading. Is there such a thing? I can tell you what you’re feeling before you can lol. All over your face. In your tone. Your hands. I can feel it on the back of my neck the instant I’ve invested enough time into someone to tell that they’re bipolar. In fact, I’m pretty good at diagnosing/guessing people’s conditions before they go in – and I’m usually correct. Border line personality disorder always trips me up.
the ending made me sad for days .Sorry to ruin in for anyone. If you don’t know what I’m talking about , then move along with your bad self.
Think I need a hot bath. Yeah. That’s exactly what I need.
I wake up at 1am, spend an hour getting ready, go to work for 8 hours, drive back home – and these muthas are still sleeping. Must be fucking nice.
I like the quiet time though.
Except I can’t keep my eyes open. Time to get up and wake up.
The kids are moving in this fall. Together. Both of them. I must be crazy , because they only things i’m worried about are if her parents are going to like us for this, and will I flip my shit when she’s around one day. I don’t seem to mind that my unmarried son and his girlfriend of 6 months are moving in to my basement for probably two years or until they get sick of us. She’s not planning on going home, like anymore. She’s officially moving here. It’s one thing to live in the dorm, it’s another to have an address. She’s made her mind up to be with him. I am over the fucking moon – unless she turns out to be a whackjob, in which case, it’ll be good they’re here – with me. The bigger whackjob. Who could definitely lose her shit if need be. But I don’t think that’s going to be the case. She’s a good girl, and she loves him completely. She is seriously like a girl who found her fairy prince. This is what she acts like – and he acts like he carries a sword on his hip to defend her and treats her like a queen.
I am NOT jealous.
I’ll have someone else to talk to in the house. Someone I like. Now. Dammit. I hope she’s not nuts lol.
I guess so. My little birdies are breaking my heart by moving out. Carson wants to get an apartment this fall, SavannaBana is moving about an hour away after next year to a neighboring college. Austin’s been gone for 3 years. Zach’s been gone for 6 years. Tyler for 7 years. What the fuck people? Where in the hell did the time go? Seriously. Once you hit a certain age, whammo, the ride gets faster. I’m zipping through my life – their life – at an amazing speed. I barely have it together to plan holidays these days, and then I go on happily many weeks/months later about how I’m going to make …rolls for Thanksgiving, or cookies for Christmas – only to have a family member remind me that X already passed. Either I’m just tired, or I have fucking dementia. I swear. Damn time warp, only I wasn’t invited. Always late to the party. I’m going on about bullshit.
I should be cleaning.
I don’t clean anymore. If you used to read, way back when I wasn’t a student or a worker, but a lean mean cleaning machine who stayed home and ran a badass household with 6 kids and probably ….. 50,000 neighbor kids, and life ticked by at a seemingly normal / almost dragass pace. Payday never came soon enough. Wished my damn life away over money. Now money isn’t so tight (most of the time), and there isn’t any time to spend it. Even when we’re off work – I only get one day a week off, and he’s the only salesman in this area that sells cable to the businesses in town. So he’s busy as shit most days answering the phone and running to installs. When we have a break together, we rest. We try to relax and enjoy what kids we have left and we are starting to realize how different life is going to be like when everybody’s gone.
Well, fuck that was depressing.
Look at me go. Jay wants to offer the kids (Carson and his girl ~LA~) the downstairs to live in – rent free, till they graduate – but they have to graduate. Pretty sure Carson will. He’s going to be a mechanical engineer with technical design as his focus. I have no fucking idea what that is or what they do – but it sounds nice and the pay ain’t bad.
They basically live in the dorm now. Her dorm room. That she is paying out the ass for. She works on campus, but the room and board is expensive. So, they were talking about moving into an apartment in the fall. So Jay came up with this idea of them living here. They’re both 20. Not worried about her living there, I’m worried what her parents are going to think of us. Not all parents are as …. I refuse to say progressive …. laid back as we are. We talk about masturbation at the dinner table. Not much is off limits – kids can always tell us anything.
i can’t tell if this would be cool or not. I like her a lot. But what if I flip my shit ? The other girls have witnessed my wrath – I guess it’s her turn . I never yell at them – but Jay and I have have ‘heated’ discussions with them in the house. She’s super super sweet. Kind of girl that wants a man to be her protector and provider – but strong enough not to need one. She likes cuddling and holding hands and walking and all that sappy jazz. Carson likes it too. He adores her. I’m so glad. So so glad. How did my crazy boy that …….. well, I shouldn’t …… well, who would demand to know if his ass was clean after he went to the bathroom. By bending over bare assed and spreading them cheeks. Company or not. Till he was about 6. Poor kid.
Should I tell the kids that stumble upon this that my free writing is choppy and winded and without proper use of punctuation? Or that I say what I want and rarely erase. However, they are safe from past posts. I got rid of everything except the pictures and skins. It actually made me cry, but what doesn’t?
I do speak my mind and I forget my place sometimes. That’s why I deleted everything. I don’t want someone hurt because of some casual snide remark I made and hurt their feelings and the friendship in the process. I once thought it a wonderful gift to my kids, but some things are best left unknown.
Hurting people unnecessarily isn’t cool.
How the fuck did my question end up here? Ohhhhhhh adhd – I remember now. I can’t make my brain sit still. I take adderall for it, but she won’t put me on a high dose – a therapeutic dose – because I’m bipolar. She think s she’s nuts for letting me try it anyway – but it’s actually help regulate my sleep. I get sleepy, which is new because I used to go for days without sleep – not now. It helps me slow up and think shit through. Rash decisions, no real hobbies or entertainment because I can’t sit still long enough to watch a movie. I hate tv because it uses MY lifeminutes to broadcast a fake fucking life that isn’t real and doesn’t make a fuck’s difference to my life – yet my husband watches anything and everything he can. He’s seen shawshank redemption 47 times. I am not kidding. I count when ever he stumbles upon that sumbitch and insists on watching it yet again. Ok, I will admit – if spongebob or deadliest catch or overboard come on – I won’t change the channel or turn it off. I won’t admit I like them, but I like them.
Damn, I’m hungry.
I want to congratulate myself on my two phone calls I made yesterday to doctors. Still have around 5-6 more to make, but Jay said he would try to get to some of them today and I can tackle what’s left. I love him.
Someone get me a cookie. Who gives a fuck?
I was thinking of something the other day. Some of my favorite experiences are ones that immediately follow some horrible stuff. Literally, like the 1-2 seconds IMMEDIATELY following the horrible shit.
Like when you have a hair in your eye. It’s fucking awful. Your eye is a pussy – it no likey foreign objects. But when you finally snag that hair, that sensation you feel when it leaves the surface of your eye? That’s Heavenly. In that moment – all is right with the world. Nothing else fucking mattered when that hair was blurring up your vision – but as you pull it out of your eye, whammo – instant Zen. A big sigh. A cheer maybe. A foul language laced flippant comment to no one in particular – such as “Dammit, it’s about fucking time”. Maybe it’s more than that. Like when the dilauded literally melts the migraine away in an instant – bringing non-pain rushing to the forefront where MOTHER FUCKING PAIN PAIN PAIN had been in charge. One moment pain, and then very next second – bliss. Shoulders finally relax, eyes can see completely now whereas eye slits were filtering out light before, and all at once you realize you would have that shot injector person’s baby for taking your pain away.
All this to say that maybe that’s the reason people cut. Or fuck with that sore tooth because it’s a ‘good’ pain. Maybe it’s not – maybe our brains release some good drugs in celebration for the absence of pain or discomfort, and I push my tongue into that tooth constantly in order to create that chemical appreciation. Give me some dopamine bitches. Not me, I take enough. heh
What else was on my mind earlier? I had several things I wanted to get out but of course I can’t remember the rest. Oh well.
I noticed that grass is turning green. I saw a robin yesterday. I’ve seen the sun 3 days in a row. The trees have buds on them. Spring is finally on the way.
It’s about fucking time.
Zero motivation to do any of it. I just want to sleep. But when I get the chance, I’m not tired. Go figure.
Maybe it’s my brain that’s tired. Tired of the bad news and negativity and horrible acts and every other Worldly thing to worry about as an
empathetic bipolar crazy person. I love being a barometer of the human emotion around me. I lie, it’s life changing. Spending my life living the sadness and pain of everyone around me to the point where I need extra medication. Yeah, let me be a psychologist. I’d blow my brains out after a month.
I have so many phone calls to make, and I just can’t. I have had a hurt arm for 5 weeks now. The general consensus is that it’s carpal tunnel in my elbow. From bowling too much. Five games, 5-6 times a week is too much, they say. Fuck ’em. Just as soon as I can hold my ball, I’m back in a flash. Ok, it’s not a flash. Over a month now of no bowling. Can’t even think about it without my arm aching. From my numb fingers to my shrieking arm to my throbbing elbow – I fucking hate not being able to do what I want.
Make phone calls Angie.
Anyway, had everyone over for Jay’s / Carson’s birthday. I love it when the kids are together. I hate that Austin is so far away. I bet he stays in this area for awhile when he gets back. Both older boys have turned down job offers in other states so they could still be here – I assume it’s because of Ian. I wish I could be a bigger person and tell them to go follow their own path, but I don’t want them far away from the family. Anything can happen.
In an instant.
I just need to make one. Maybe one will help me make the rest of them.
Dammit, I hate my brain sometimes.
Still think of Ian a million times a day, but I’m getting used to it.
Not like I can do anything — but I can love him and make his life worth living.
I read an article today about the number of kiddos born with Downs in certain countries 0% — because they abort at the mention of those two little words – Down Syndrome. I get that life takes a detour when you have a special needs child – trust me, I know. But detours aren’t always bad. They’re how you find out about those special places off the beaten path.
I thought about it all day. Had I been given the option to abort, knowing what I know now about my son, would I have taken that option? Ummmm, no. No amount of time with him will ever be enough, but the time we have is better than never knowing him at all. And miracles happen every day.
I’m sure hoping for one.
I get really tired when I think about what’s to come. So very tired.
Until the story of the cop helping the autistic boy find his lost teddy bear. I lost it. Thought I was steel and could handle a feel good story. I was wrong.
Might indicate that I need a meeting with the psychologist. When I’m crying at commercials and empathizing and crying over bambi roadkill (omg, did it die alone? In pain? In the cold? arghhhhhh) all the while seeing a steady decline in my function. I’ll make the appointment. Tired of feeling like this. Not that she can magically fix Ian and my depression is going to disappear. I know that. This is as good as it gets. Today. It is quite literally downhill every single step we take going forward. And that’s fucking depressing – I don’t care who you are.
Enough. No more sadness. It’s date night.
In fact, I need to fluff and primp and spray myself with a luscious blend of florals for my man. Must not offend. I have some seducing to do.
about who I invite here, but everyone still has the link and if any of the ones I didn’t want reading happen to see me posting again, then I’m not really free to talk, eh? S’ok. I’d rather be free to say what I want, but I’ll continue to watch what I say. Sucks though.
My gums hurt. I keep grinding my teeth and my gums are suffering. I’ve been chewing gum like a motherfucker to keep from chewing my enamel away.
Carson will be 20 tomorrow. I am shaking my fucking head over that statement. 20. Twenty. My crazy little guy is now a near normal, near perfect human specimen. He is polite and kind – genuinely makes him happy to see other people smile. He spoils his girlfriend rotten. She spoils him as well, so they’re even. And sickening. Anyway, he has money in the bank, always makes sure he pays his bills, and he’s careful what he spends. I’m just so proud of him for how far he’s come. Seriously. I remember. THe shoes flying at my head because he didn’t understand what I was saying. His oatmeal had to be perfect every day. Books lining the house. We lived in a literal world. But you know what? They say one of the most important things you can do for an autistic child is to put them around others so they can emulate. We had a built in social group in our house. 6 kids, 2 adults, millions of other kids coming and going every day. Interacting with him – like it or not. He has learned to be ‘normal’ by watching his siblings. Except he takes most things to the next level. Be nice to your girlfriend means – get her door. He does, every time. Every door. She blushes every time. They’ll be married sooner than later.
I like her though. She ‘gets’ him. She ‘helps’ him at times. THAT’s what “I” was looking for in a partner for him. Not that he needs special help, but someone who was patient and could help him learn new areas of life he’s bound to come across living more and more on his own. He needs help navigating new things, but once he’s done it once – he’ll do it perfectly every other time thereafter.
I have insurance bullshit to wade through. I have procrastinated long enough.
and it’s gorgeous outside. Trying to think of what to do that doesn’t involve much hassle where ~I~ is concerned. Something that isn’t expensive. Isn’t near the bulging riverbanks. Something fun. It’s getting harder and harder to define something fun since Ian became less mobile. Honestly, he can’t do much. Watch. He’s good at watching. Poor thing.
All in all, I had a great time with my husband, and I feel rested and ready to go back to work. I feel blessed that we were able to get away and that the older kids really stepped up to help out with Ian and dinner and and and… I raised good kids. I needed the break.
Overall, it was nice to get away with just Jay and I. But personally? Maybe i’m just not a hip gal, but I don’t see the thrill of Vegas. We got there at night, walked a bit around Fremont street, and then went to bed. The second day I had a migraine that ruined the entire fucking day. The Entire Day. I puked and slept and moaned the entire day. While Jay sat there, bored. He would run and get me different things to try and kill the headache, but nothing did. It must have finally released its hold in the night, because I woke up pain free. We went to the strip and walked, we talked, we walked, we sat. We walked some more. But it was cold and shitty and windy as a muthertrucker, and we ended up back at the hotel wandering around the casino. We ventured out around Fremont street later. And the next morning we flew out. Short and sweet.
Next time we’ll go to Branson. We are just mellow, walk a bit, let’s have some quiet kind of people. This trip kind of stressed me out. 3 of the 6 elevators were broken, and one of the three remaining ones let you drop an additional 3-4 feet before launching you back up to the door. Fucking terrifying. I almost pissed my pants – the first time. Yeah, I “rode” it twice because my dumbass husband wanted to see if it’d do it again. WTF – I was kind of sucked into it – all the while feeling pure horror. I thought we were going to die.
And yes, it did it again.
Please let no bad happen. Here or in Vegas. Let me win enough so I can quit my job forever. See? Not just a year or two, not a decade – a lifetime. Only work where I want when I want. Is that greedy? Meh, There are people that win big that never do even half of what I would love to do with the winnings. I would have so much fun.
Anyways, gotta run.
We leave tomorrow for Vegas for 4 days. Really two, but who’s pissed about it? Ok, I am. No other choice, but still pissy about it. Monday I have to work from 2am -10:30, so we missed the morning flights. Only other ones are after 6pm. So we get there at 9 and ? Won’t we be tired? I know I will be. And then we fly back Thursday morning at 10am, so that’s not a day to count either. So we have Tuesday and Wednesday. Probably be ready to kill each other soon in to Tuesday.
Really sucks that we won’t have as much cash to take as we thought. And we really aren’t taking much to begin with. But of course, cars will break down. They need tires and windshields and batteries and that’s all in one week. I laugh so I don’t bawl. BUT – we still have some, and should be enough to gamble a little.
My uncle died. I liked him a lot. He stepped in when Dad died and helped my mom tremendously. He had trouble with his memory a few weeks ago, so they starting running tests, found an inop brain tumor, and he died Tuesday. They were planning a trip. He didn’t expect to die this week.
Scared me again. I’m not scared of dying itself. I’m scared of not living. I don’t want my kids to have to dig through my clothes and shit or have them find My Drawer Full of Female Goodies. I do have letters in my underwear drawer for everyone. I need to update them. I also have a file entitled – Things to Do In Case Angie Dies. It covers mostly online shit. This blog, my FB groups, user names, passwords, etc. But there will always be more to tell everyone. Few people are 100% prepared to die. But with no warning? I don’t dig that. Not at all. Of course, the long progression into’s I’s disease means that we get to pre-mourn for years. It’s always there. Waiting. Fucking waiting. It’s just as strong as grief felt after someone’s passing. I am heartbroken about I just as much as I was/am about my dad’s passing. It’s devastating. I can only imagine what the grief morphs into when the time comes. Nothing good. We’ve been this way – living on a tightrope between sanity and the fucking funny farm – for almost 9 years now. Not sure how much longer we will have – but I hope it’s a long long long time. I hope this exon skipping drug for his type of Duchenne works AND the FDA approves it. That’s pretty much our only shot. Nothing else is really recruiting for anything “major”. Heart and Lung trials – which excludes entry into the more important studies. THen again, his heart is starting to enlarge, and his pulmonary scores are starting to decline. He’s leaving his hooneymoon phase and starting to really progress into the active window for Duchenne.
And there isn’t a fucking thing anyone can do about it.
I’ve missed this. The ability to dump out the shit in my head.
Makes life less complicated that way.
I can’t wait. Next week Jay and I will be on a plane headed to Las Vegas. My husband of almost 30 years. Happier than I’ve ever been. Trying not to wait on the other shoe to fall. Trying to enjoy life as it comes. Trying to get through the day without crying about my son. Some days that’s harder than others.
He’s asking about his future. Wanting to know if he’ll be able to drive, date, marry… I tell him of course it’s possible. I tell myself to believe that anything is possible. I want to believe that he’ll defy the odds, but it’s hard to battle this monster – Duchenne has never lost a battle. Never. No cures, no real treatment. Just a progression into hell.
ANyway, this was supposed to be a happy post. We’ve never been on a honeymoon. We went to FL last year for his sister’s wedding, but he was sick the entire time. Every other vacation, I was sick. Throw us some – let no bad happen – vibes. Planes make me hurl. Please plane driver, don’t scare the shit out of me.
Jay has been offered two jobs. We are trying to pick the right path.
First job is to stay with the same company, just be promoted up a level. The Boss instead of the business sales guy. Nice chunky raise. Decent benefits. Perks would still stay the same working for same company.
However, his company has been bought twice the past 3 years. And this current owner is HUGE but we’re not sure what direction they’re headed. That’s why he was looking. Jumping from the Titanic. Maybe.
Second job is with a small IT company. They do very nice business. He would manage, so our livelihood wouldn’t be contingent upon him selling. That is awesome. That means a steady paycheck. The same amount each week. Awesome. And, they have bonus. We would average around $3000 every quarter if they stay on the same growth pattern.
Negatives? New company. Small. No insurance. Insurance on the market is high. Then again, I have insurance offered at my work – a government job. It’s not the bestest, but it’s damn close. Yeah, I checked. It would still be half of what we would pay on the marketplace. I prefer the IT company. I like steady money. I’m trying to manage finances with checks that have ranged from 780-7564. We still live as cheap as we can. Couple of those slower months can kill you. Scary times, sometimes. Of course, he’s had 3 awesome months. But how long until it slows again? I hate it. I just hate it. Panic and anxiety at your service.
However, if the Titanic pays what we think it pays, then he wants me to stop working. He said he wants his life/wife back. But he’d be gone all the time – all the time. I almost couldn’t work, as there would be no one here with Ian and Bana from 2am – 9am. No. Just no. Not worth it. I hate sleeping alone.