Wheelchair comes today. I just love taking another day off for this shit. And tomorrow is the KU appt with Dr Barohn. I think that’s how you spell it.

The dog is going to live with my sister. I knew it wouldn’t last. The kids don’t play with him, they don’t seem to like him, and they damn sure don’t help out much with him. MB3 does. The Nephew does. Other kids could care less. MS’s kids actually like the dog. They run with him and play with his toys and hug him and all that good stuff. And they live out in the country where he can run. We’re hardly here now with school and tomorrow he’s going to have to go all day without a potty break unless MB2 comes home in between classes and lets him out. Just too busy for a dog. Not to mention that this house is small. There is no room to put shit up like in a regular house. Book bags often remain on the floor at night, and the dog then eats said book bag. Or my fucking favorite sandals, that I’ve had for 4 years and can’t replace now and damn that dog anyway.

Now to get her to take the cats. Are you listening?

Make a wish people came. Looks like we’re going to Disney in March/April. “You will receive a three-day “park hopper” pass for each person on your Wish trip that allows you to visit the Walt Disney World theme parks: The Magic Kingdom, EPCOT, Disney’s Animal Kingdom and Disney’s Hollywood Studios. You will also receive two-day passes for each person on your Wish to Universal Orlando and Islands of Adventure theme parks and a single day pass to SeaWorld Orlando.” Are we going to be busy. He’s going to have the time of his life. I guess that’s the point, huh? I try not to think of WHY we are going on this trip. I try not to think of a lot of things.

The MDA is having a reunion for the camp folks next weekend. This weekend we’re going to World’s of Fun, compliments of my boss. He’s really one helluva guy.

Hey, I haven’t had one drop of alcohol today. Realizing that it’s 8am, I will state that I did not have any yesterday either. Or the day before. Just for the record and all.

Ignore me. I’m not going to delete it because that ain’t my style. Shit happens.

Damn. I was all excited about having half a minute to post and then I started with the…. don’t repeat  yourself yadayada let me go back and reread and then I was all hey are you going to post that you’re drunk and then I was all wait I’m not drunk and then I was all well, you’ve been drinking enough to make you altered and then I was all so why I gotta be drunk every fucking time you sit down and then I was all like damn I’m really depressed now and then I was all like ok. Time for an intervention.

And then I thought, but I never really expected to NOT become a drunk. I knew it’d come someday. Just thought I would have waited until AFTER Ian quit needing me.

But I know I’m not a drunk. Not yet. This is a wake up call to myself to knock my shit off. Damn.

Gotta waste a post with this shit.

———-

Ok, not wasted…… I mean the post isn’t wasted. Wait. I’m not wasted either.

———–

Ok, for real this time ……..

Wheelchair comes on Tuesday. Except I have to be here from 9-4 waiting all day for them to come. Isn’t that a bitch? Like I have the PTO hours to waste waiting for them to show up. My luck it comes at 3 pm and fucks me all day. I cuss alot when I’m drunk.

———

Should I go back and read what I just wrote? I’ve not had THAT much to drink and I don’t want it to seem like I drink 24/7. I drink when J is home and tonight I didn’t wait for him to get here and that makes me feel guilty. Other than that though. What the fuck. It’s the weekend and I’m human. Right? Why do I feel guilt about this? Enough to waste 3o fucking minutes on my blog bothered with it.

———-

gah

———–

I’m outta here. To clean my toilet and try to purge my guilt from my hard limeade.

Don’t know if I’m coming or going. So much going on with back to school and Ian’s appts and my appts and MD’s appts…….gah

I can’t even update because I don’t know where to begin or even where I left off.

School starts tomorrow. Half of the kids are taking the bus, the other half aren’t. I think. Haven’t decided yet, and it’s the 11th hour. Help. Gawd. Geezus. I can’t even think straight. I know Ian is taking the bus, but not yet. Not until he gets his wheelchair, and that hasn’t come yet. Dammit. MG can’t take the bus because they cut routes due to funding, and she’s now a walker. Bullshit. She’s only 9 (happy birthday little girl), and she’s not walking anywhere. So, I’m taking her and going to put her in day care with Ian after school. But that means I have to get off early so we don’t go broke cuz it’s $4 an hour each. And then there’s MB4, who might have to walk home from the elementary school alone. Dammit. And all this happens as the paper printed a story this morning about a perv trying to snatch kids from around this area. I just can’t  ……  I just cant……..

I have to go have a nervous breakdown.

These are the moments I thank God that I’m alive
These are the moments I’ll remember all my life

Autoplay on the brain all day. When my brain sends me this message, and it does a lot, I smile and know that overall, I’m pretty damn lucky to have my life. Shit and all.

These are the moments
I know heaven must exist
These are the moments I know all I need is this

Older boys are stepping in line for once. Doing chores and talking to us again. Like we’re friends again. Asking permission instead of forgiveness. Chore chart has been revamped, and newest member, MoodyNephew, has been added to the mix of chore-do’ers. He’s taking it in stride and seems to be adapting well. Older boys are taking him around town to see movies and play at the water park and taking him for lunch, etc. I’m glad they seem to be getting along.

Little ones are still fighting like mad, but I guess that’s never going to change. Not until they are old enough to pal around like MB1 and MB2. They’re practically best friends. Now. They went at it constantly when they were younger.

I gotta split, MG is lonely and talkative. I gotta go talk to her before she turns into a teen and hates me. It’ll happen before I know it.

I wish to gawd I could stop the clock. More than anything in the world, I wish I could stop the clock.

That was the sign up at the local church as I drove by tonight. For some reason, it …. startled me. Not quite sure what I believe is going to happen, but it spoke to me all the same.

I miss being bipolar. I miss being able to go batshit crazy and just let it all out. I miss being able to come here and let it spill. I miss the real life friendships I’ve made over the last 7 years of blogging. Those friendships saved my life many a time, and now I’ve let them all wither away. I know I still care, and I’m sure they do to, but sometimes time just dances away while the reason for the friendship dies off and the need for the support fades and you just aren’t really friends anymore. I hope we still are though. I hope we’re the type that can just pick up where we left off, talk till 4 in the morning, and say goodbye for another few years.

———

Geezus, where was I going with that? Not sure I remember it exactly, but somehow I was going to tie that in with an apology for why I have just kept on keeping on when I know I should just hang it up and go home. That I’ve let this blog die because I’ve changed so very much and I worry every day that I’ve changed so much that the reason people liked me is gone. You, my husband, my friends…… am I just me only nice? or is Angie no longer the majority stockholder in this life? Again, I worry every day that I’m a familiar stranger and it’s just not good enough to hold it together.

———-

I’ve had a few too many. Raise of hands, who already knew that?

———-

I do not drink every day. I have drank 1 winecooler every night this week. Tonight I had 4. But my husband will be home soon and has already promised to fulfill spousal obligations and I decided drunken sex sounded better than just regular sex, and I just hope he gets here before I go night night. ‘Cause I’m so very tired.

I guess there’s more before I go outside. We met with the gal from the MDA on Thursday. She told us that if we switched Ian to KU instead of Children’s Mercy – it will be covered at 100%. Paid for by the MDA. And that while she adores the CM doc he has, she isn’t a specialist on Duchenne, and the doc at KU is. What’s more, he’s best friends with Dr Mendel – the clinical trial whiz. If there is something that could save his life, they would be the first to know about it. She suggested that we see both docs. See CM every 6 months, and see KU every 6 months, that way he’s being seen every 3 months by a variety of different people. I agree.

THen she told us that his flu shots are free from now on. And that every MDA kid gets $500 for repairs a year on their equipment. And that she has a loaner closet that has everything we might need in it. Like a power chair when the time comes. She said that power chairs are around 25k, and insurance will pay for $5k. So, they loan us one while he’s still growing. Then she finds us the rest of the money through grants and gifts. She’s an awesome woman who knows every kid with MD by heart in our area. She knows that “Josh” just turned 23 and leaves for KU next week. She knows this shit about every child she helps. She’s amazing.

She gave us books and told us not to read one of them yet. So I did. ‘ Cause I’m a child like that. And I read it in the car before we went into the store. And I bawled through the store. And then I read it 4 more times to harden myself to the words. I can read it now without crying. I am victorious. I can tell you that I am NOT strong enough to actually live the last two chapters of the book. I’m just not. I’m falling apart now and he’s damn near perfect right now. Perfect little man. How fucking cruel for life to start taking away his freedoms. I have got to win the lottery. I have got to move to Columbus Ohio where this doctor is and pay someone off to get a trial ready for my boy. I have to do something.

———-

I called the school and the bus company. Bus company said they would be more than happy to pick up him and his wheelchair – after I had an IEP in place. ?? It takes months to get an IEP around here. So I called the school and the gal directed me to another gal and she cried foul on the bus company and said she would work it and let me know. So I wait. I told her all he really needs right now is extra time in the bathroom, railings on his chair to push himself up, no sitting on the floor during story time, pencil grips, and common sense at PE. Maybe let him be coach’s helper or score keeper or whatever. Angie (the mda gal) said she would come up anytime and talk to the teachers or students or the IEP team or his soccer coach and teammates — whatever I need. SHe’s an absolute doll.

——–

Ok, I think that’s it. I can go outside now.

Where to begin? You know it will be the short version, ’cause that’s all I’m good for anymore. Yes, I’m taking my pills, I just seem to be getting ‘funk’-y all the same. OH well….

MB3 and MB2 had a fight downstairs. They bring it upstairs and MB2 motions for MB3 to come outside and fight. MB3 shot out of here like a rocket. MB2 got MB3 to the ground, then MB3 got him in a head lock and MB2 was hollering for MD to release MB3’s hand. So MD let it go for another few seconds, and then broke it up. So MB2 rears back to punch MB3 in the face, and MD steps in and pushes him back. Next thing you know, MB2 is cussing and hollering about how he hates this family and he’s never coming back and he gets in to his car and drives off.

I was  a mess from the get go. I was an even bigger mess thinking of him driving that upset.

Few minutes later he comes back and goes inside and downstairs to pack. Lots of things happen at once. Him and MD get into it, and MD takes off and tells me that since he’s a bad dad, he’s going to leave. !! He leaves. !! Meanwhile MB2 feels bad now that MD took it so hard, and I can tell in his eyes that he feels trapped now and doesn’t know what to do.  MB3 comes down and they cry and make up and all that jazz.

MD calls and tells me that he just needs to cool off. He comes home and eventually goes downstairs to talk to MB2. I hear nothing for 30 minutes. I am worried out of my mind that they are down there fighting and shit.

Next thing I know MB2 is S-C-R-E-A-M-I-N-G at the top of his lungs — moooooooooooooooooooom, it’s dad. it’s dad.

That’s all he could say. And he could point to the stairs. So I flew down there, so find MD face first on the floor – out. I holler and shake him a little and he opens his eyes. Says he can’t really move. Next thing I know, some man is walking down the steps and crouches down with us. It’s a cop. Said someone called 911. (MB3) MD slowly lifts himself up to a crawling position, and two more men come downstairs. Ambulance guys. They sit him on the bed and ask a billion questions and take his blood pressure and pulse. We tell them about the volleyball tournament the day before and they say he’s probably having a heat stroke/episode. I say it’s stress from the boys. I was afraid that he killed himself or something. I don’t know why, but it was a weird night and anything can happen in this heat when people go crazy.

They ended up leaving him here. Told them that I would take him in if need be.

He actually goes outside and finishes cooking – at 9pm at night because the kids were hungry and he wanted the steaks.

I was a mess. I didn’t want to eat.

————

That night we’re talking because I really didn’t think it was cool that he left. And I don’t think it’s cool that he’s asking me to choose between two pieces of my heart. He thinks it’s tough love, and he’s right, but they haven’t fucked up so badly that it can’t be healed yet. Wait until they do before you kick them out. And don’t tell them they can’t come back if they leave. ‘Cause they won’t. And I can’t bear the thought of never seeing them again.

I just don’t need this shit right now. I cry every day as it is. I just can’t help it.

Anyway, that night MB1 calls from work and tells us that he wants to go to this party for a friend who is leaving town. We say no because he’s still grounded from the whole pot/possession thing. This was at midnight. He comes home at 3am with his hair wet – he went anyway. Swimming at this party. Moron. I don’t wake MD, I just make a mental note to jump MB1’s shit the next day.

THen I find out that he went to the aquatic park the next day. Didn’t ask if he could leave the house. He just did.

So I have a good long heart to heart with him. I tell him that MD wants me to choose. I tell him that although I wouldn’t like it, if they keep disobeying and fucking up, then I will side with MD and they will leave the house. We can’t have the other kids thinking it’s ok to do whatever the hell you want in this life. I get that. I do . I just don’t like that taste the words leave in my mouth.

————

Then MD comes home and they talk some more. He tells us that he’s been thinking about the Guard. Not sure how serious he is, but it’s the first glimmer of hope I’ve had in a long while. No, I don’t want my son to die in a war, but the military will give him what he needs. He’s the perfect kind of person who benefits totally from the service. The self esteem, the motivation, the pride, the family, the responsibility, the girls who love a man in uniform…… But I would be scared for him. He’s my baby boy.Always will be.

Sigh.

————–

Then MD is talking to this gal who owns a sports complex here in town, and Ian came up. Namely his Duchenne’s. MD is her beer guy, and they want him to help them build a volleyball complex. She said she had no idea, and that her grandson had it as well. Said she had all kinds of stuff we could have that he used while …… he was alive. MD asked how old he was when they lost him ,and she said 14. So that means that the last 4 kids that I’ve heard of that have passed have been 14, 12, 12, and 14 . That’s not 20. Or 30. That’s still just a baby. That hurts my heart in a way the average joe can’t possibly understand. Unless a miracle happens, my youngest son is going to die. That’s the fucking reality of it. We might only have 6 more years with him. That’s not enough. I gave up long ago on the hope that someone is actually listening, but I pray every night that Ian makes it to 40. Or beyond. I want him to be that exception. I want him to know love. I want him to drive. I want him to get a job and feel productive. I want him to be old enough to appreciate every day of life that’s given to him.

I want to die before he does.

And with that, I’m off. Going to sit outside for awhile and listen to crickets.

Tourney was a success and my work is awesome. I’m still recovering from the damn heat stroke I got, but I wanted to update you all how well it went. Play went on from 9am to 10:30pm. My boss said next year we’ll have double the teams on a 2 day extravaganza. Is that how you spell it?

He’s nuts.

There’s other drama to talk about, but I just can’t do it right now. Never seems the right time.

And now I realize that I never spilled the beans about the other incident. Well, someone got a misdemeanor possession charge. Isn’t that special? Lawyer (that he is paying for) said he should be able to get it wiped since he didn’t actually have any on him. He was just smoking some other guy’s.

You know. It’s one thing to smoke dope. It’s another to be an IGNORANT dope smoker.

And they wonder why I’ve taken a liking to Mike’s hard limeade. Every night.

Oh, but the drama from last night? Geezus. Started with a fist fight on the lawn between MB2 and MB3, and ended 2 hours later with an ambulance – for MD.

Shit, I’ll tell you about it tomorrow.

Tournament tomorrow. Usually register around 14-18 teams – tomorrow we have 41. Yes, you read that right. FortyFuckingTeams.

YEEEEEEEEEHHHHHHHHHHHHHHHHHHHHAWWWWWWWWW

Except, instead of getting out of there at 4? We’ll be getting out of there around midnight. It’s all good though. I hope.

Wish us luck. I bet we run out of food.

I am so burnt at work it isn’t funny. Takes everything I have to make it through the day. I’m hoping it passes once the tournament is over with and things are back to normal. 3 more days.

We have 21 teams so far. That’s more than we have ever had, and there are still a few stragglers strolling in. My boss/owner is playing. Going to make me nervous. I’m going to have a tshirt made that says Angie’s Boss. Do NOT Smash the ball into my face.

Going to meet the gal from the MDA tomorrow. Hopefully she’ll tell me that all of my worries are over and they’ll build me another room and bathroom up here for Ian for free. What? No way in hell of that happening? Oh well. Him being able to go to that camp was pretty special. That’s good enough if that’s all there is.

One thing at a time though. Porch/ramp for now.

People are coming out of the woodwork donating stuff to raffle off. One gal gave a SHITload of extra school supplies, a large bag full of scrapbooking supplies, and she’s making a volleyball quilt for us. Real sweetheart.

—————–

Haven’t paid bills again. Including the mortgage. I really need to get with it.

MD’s tire had two nails in it. That means more $$. It’s always more $$.

——————

Did I mention that the doctor has put me on Inderal. Again? I was on it once before, but I couldn’t really tell if it did anything for me or not. It seems to have eased up my headaches a bit. It’s also helping at work. They give it to people for stage fright/social phobia. I like it.

I also made an appt for a pap and mammogram. I’ll wait while you cheer. Gal on the phone said – please tell me you’ve seen another doctor in the meantime and it hasn’t been 7 years since your last pap. I refused to answer, and she said – oh boy. She was even more thrilled to learn about our family history of cancers. I’m such an idiot. THey’re going to find something, I just know it. Dammit. I’ll be stressing about this shit for a month and a half.

———————

This dog isn’t the brightest pup in the litter. He doesn’t bark, so it’s hard to tell when he wants out and when he wants back in. He just pisses wherever he likes. So, I keep him out side or in the indoor crate. It’s a 4×4 area in the living room. He won’t go in there. Damn dog chews like nobody’s business. We bought him toys, but he prefers shoes. Like brand new ones. Dammit. I should have waited. The kids dont even seem to like him. They do, but they don’t want him chewing on their shit or want to take him out or feed him or anything. I should have known. Now I have a cute puppy that the kids thought would be more like a cat. But he’s not a cat. I tried to warn them, but NOOOOOOOOOOO, they wanted a dog.

——————–

Alright. I gotta go to bed before this dog’s whining drives me bonkers.

———————

BTW – 6 years without a smoke today. Yay me.

MB1 surfed more porn and delivered a nice bug into my computer. Shithead. So now everything is so fresh and so clean clean. and empty. and lost. and unrecoverable. idiot.

Make a wish is coming out this week – did I mention that? He’s wishing for a swingset. Or maybe a jeep to drive around in. Said he probably won’t be able to drive when he’s in a wheel chair, so he’d better drive now. Dammit.

I’m feeling better, but I can’t stick around. This key board is sticky and considering …… oh well hell.

Haven’t taken my pills in 6 days. And I wonder why I’m depressed. Idiot.

Excited about the tournament though. People are really rallying around it. I hope it goes smooth.

Pound puppy we got today. He’s about 3 months old. He’s cheering us up. And chewing us up.

Kids are in love with their first dog.

Cats aren’t so thrilled.

Almost 3 years since Dad died.

Adopted a stray cat named Hobo. He sure loves our food. Wish vet bills were free.

Headache all weekend. Two shots. $150. Wish shots were free.

Donations and registrations are trickling in now. I’m home most of this week to help. MD is home all week.

Left front tire coughed up a huge nail that couldn’t be patched. Two new tires and $300 later – I”m wishing tires were free.

Guy at the tire place saw our flyer and asked about Ian. Said his son had Duchenne too. He did rather. He died at 16.

Depression colors my life right now.

I have an appt with my pdoc on Monday. MD is going with me, because he’s on vacation. I haven’t been in months, and my doc graduated. So now I’m going to have to start all over with someone new. Sigh. My anxiety is better though, so maybe they can move me to semi-annual visits and be done with it. I am so ready to be on “maintenance”.

There is more to the story on the boys, but I’m not ready to tell just yet. Still very weary where they are concerned. Still cannot believe the balls they possess to keep on smoking when they KNEW another drug test was coming up on Aug 1st. Pinheads.

MG is telling me how she doesn’t believe in the Easter Bunny anymore. She’s almost 9, so it was a good run. She doesn’t believe in the tooth fairy either. Santa though, now HIM she believes.

Ian has a PT appt tomorrow. I haven’t been doing as much with him as I should. He acts like it hurts him, and it kills me to stretch him like that when he’s grimacing.

I need to have the kids’ picture taken, but man – talk about money. Probably borrow mom’s camera and take some my damn self. Wish I was better at it. Will have to do.

I love cashews. I know you care.

I had an ok day at work. I helped out with the other stores because L helped me out with 3 of mine. Left me with not a lot to do today. I liked it. My boss is going to learn how to audit stores next week because I’m going to take off 3 days and spend it with MD while  he’s off. We’re going to get things ready for the tourney.

The cooler my boss has for me to raffle off is worth around $400. Hope it fetches a good amount of traffic.

Ok. Time to hit the road. Going to watch MD’s volleyball game and enjoy myself.

I’m still surprised when the sadness smacks me in the face. I forget sometimes that Ian is sick, and then I remember, and whammo. Lights are knocked out of me.

I feel saddened by t he older boys as well. I don’t understand what they’re thinking. They’re not, that’s the problem.

I’m just so very tired.

Big news we’re mulling over is having MoodyNephew move in with us. Long story, but suffice it to say that it would probably be best for him with us going to school here. Things aren’t going smoothly at home for him, and he’s currently living with my mom. Bored out of his mind, needless to say. We’re still thinking though, and my sister is thinking. But I bet he does.

———

Found out that the boys are still smoking. They waited until after their drug test to start up again. Had an even longer talk with them tonight about what happens when we catch them the next time – basically we help them pack. And they are both grounded from all friends and activities. Work and home. That’s it. Damn kids.

Weighing a big decision about our family. Not ready to talk about it yet. Still processing. Nothing bad.

—-

I wish I could go to BlogHer. That’s all. I just wish. Someday.

—-

I’m so busy at work it’s unreal. They said my workload would be cut in half in terms of auditing, but that hasn’t happened yet.

Found an old OLD friend on FB. Made my day. She was my first drinking/smoking buddy. I was 15. The good ole days.

Work is crazy. We just started using the duck company that screams that horrid shit. THen we started a 401k program. That is in the works right now actually. I am setting it all up this week. The duck shit is set up and underway. And I still have to do my regular payroll and audit stores. I thought my workload was going to be reduced, but the girl who was supposed to be helping me doesn’t seem to know it yet. Or she’s just taking her sweet ass time with her work so she doesn’t have to help me. Figures. I’m used to that shit. Other girls that audits does that to me every month. We both audit 6 stores. But yet I do payroll and benefits too. And then I have one or two appts during the cycle – and I’ve STILL beaten her the last 3 times. I was done posting before she was. Ready to do statements before she was.  Just fucking better, and I hope she’s stalling on purpose because if not, she really sucks.

I’m so very tired.

And because I let it be known that I was having a good week, a good swift kick in the nuts was sure to be headed my way….

In the mail today –

1) $1770  bill for the genetic test AFTER insurance paid their “portion”

2) $486 raise in the house insurance a year

3) evidence that my oldest still has not signed up for college classes – and he’s running out of time

———–

Just damn.

Owner paid for half the shirts. Got a buck fifty raise. Boss donated $100. GM said he’ll get donations for food and raffles. Other boss said she’s taking cutting my auditing workload in half because I work too hard and no one else does.

I’ve had a good week.

——–

Ian is out of the splint. Thank gawd.

——–

Doing fireworks tonight since it was raining last Sunday. Let’s hope there are no trampoline incidents tonight at this house. It’s the only house we can shoot fireworks at though, so their fucking trampoline is part of the package. Fucking trampoline. Has cost me $125 this week. I just won’t let him jump. Dammit. The docs said not to do that. Dammit Dammit Dammit. I don’t know.

Ian wanted so badly to jump on the trampoline with the other kids, but he was afraid. MB1 finally talked him into jumping with him, alone. Ian agreed. They jumped for a long time, having lots of fun. Then they were both tired and sat down – only MB1 accidently sat on Ian’s foot. He couldn’t put any weight on it that night, and was still hobbling around the next morning, so I took him in.

Said his bones haven’t quite ossified yet, whatever that means, and they can’t tell if he has a fracture or not. But that he does have a pool of blood sitting on top of his foot, so he wanted him in a splint for a few days. If he’s still limping after that, then it’s a cast.

Fun times. The kid can’t walk, so he’s carried everywhere. Have to hold him to pee. Have to wipe his ass. Have to Have to Have to. Like I said, fun times.

Remember the reason we celebrate today.

When I finally got around to paying bills, I fucked up and forgot I paid something. It ran us short in the checkbook about $100, but it was just enough to bounce, and I mean bounce, several transactions. Redb0x shit. $1.08 turned in to $21.08 after charges. And MD’s lunch food, so $5 turned into $25. Mostly shit like that. All of it was paid, but it was a $20 each time. And since I didn’t know, more charges came in as we nickeled and dimed the account to death. Them MD deposited his volleyball check so we had more charges. Gas and food and such. But his deposit isn’t on the register from the bank, and they don’t know where it is.  He’s supposed to call Monday and talk to Judy. Judy better help us or Judy will suffer.My check was direct deposited in to the account Friday, and I was able to use $18o of it. Isn’t that sweet? I shoved all the bills to later in the month and at least we had enough for food and gas. I just feel like punching someone. Hopefully MD can get the charges reduced, at least.Bah.

——

ANyfuckingway……..

——-

Genetics counselor was a waste of time. Did I mention that already? Basically told me that I shouldn’t get tested. Should wait for MG to have it done when she’s 18. But more than likely, we’re not carriers. Duh. 4 older healthy boys should tell her that. Anyhow. $50 down the toilet.

But at least the PT appt was free. Whooooooohooooooo freeeeeeeeeeeeee….I love free. And I learned a lot of good exercises for him. She made the comment, he’s already on his tiptoes when barefoot. I don’t know if that’s bad or not, because she only smiled and said we’ll help him when I asked her.Bah.

——–

Ok, Ok, the thing that is stressing me out at home …… the two oldest boys …….. got , or are getting tattoos. There. I feel like a failure since I couldn’t/can’t stop them. MB1’s is a very nicely done tat that reads family one way and forever the other. I know that it beats getting a clown on his ass, but still. He’s only 19. ANd MB2,  ……. he wants an octopus. Can you guess why? Because it has 8 legs, and it’s strong and powerful and it means family to him. He wants it on his lower leg so you can’t see it when he has dress pants on at his office job later in life. MB1’s in on his side reading up and down. From armpit to hip.

MD said he feels hurt and depressed that he can’t stop them. Like he’s out of touch with them. I tried talking to MB2 over and over, but his mind is made up. I feel like a hypocrite for telling them no when I have one, but I waited until I was 35 years old.

I don’t know. There are worse things in life. A nd like I said, at least it’s not a girls name or some shit. Right? Bah.

——–

MD quit his weekend job. Insert fear here. That’s $400 a month missing. I know he’s tired. He hasn’t had a day off in 6 months. He never gets to sleep in. Never gets to be with the family or do anything. He’s going to try it for the rest of the summer and then when the college kids go back to school (they are the ones stocking for him), then he might go back. We’ll see how badly it hurts the budget. I’m betting a lot. That’s two car payments. Bah.

——–

Thanks Leslie. It means a whole lot. Really.

Boys paid for us to have a date night tonight. Dinner and a movie. Eclipse, in case you didn’t know. Now if MD could ever get his ass in the shower.And after that, we  come home to no kids. Older boys will be either working or out for the night, and my friend took the youngest 3 for the night. Wink.

The tshirts have arrived. Supposed to be blue, but I got 10 free ones instead. Works for me.

The boys passed their drug tests. So did their friends. Thank gawd. We’ll see about next month.

I’m nervous about the genetics appt on Tuesday. I don’t think it’s likely that I’m a carrier, but you never know. And another thing, am I going to be tested at the appt? Or will they just discuss it with me and make another appt? Just to get more fundage from me? That’s what it seems like. Have to make another appt for the cardiology doc to get the new med. Couldn’t have just given it to me over the phone or at that time or whatever. I have to actually go back before he’ll write the Rx. Doesn’t make sense.

I paid the important bills. Cars, house. Cell phones. Perhaps they can hop off of my ass now.

MB2 turned 18 a couple days ago. Hard to believe that I have two kids that are old enough to live on their own. Well, in theory. Perhaps MB2 could, but I’m not sure about MB1.

Still haven’t paid bills. They are going to get pissy soon. Oh well. Come get me. I just don’t feel like it.

I need some free ringtones to go with my free phone. Cause I’m cheap like that. MB2 showed me how to convert any song in to a ringtone, so what song? Is stranglehold an acceptable ring tone? First few chords of freebird? stevie wonder? I have lots of music. 788 songs to be exact. I can’t decide what won’t embarrass me as a ringtone. I embarrass easy.

You know what I don’t have? Fire down below. I can ‘t find it anywhere. Very sad. Dad had every step of the way, so at least that made me happy. Couldn’t find that one either.

MD is home. MD is home. YAY YAY . Time to beat feet.

MD stayed home today to work on the ac. Took the blower motor to the shop here in town and they replaced it for ……. $25. Yeeehaw. That’s what I like.

Upgrade time, which means ang got a new phone. MB3 needed one, so that’s how it works. I get the new one, MD gets my semi-old one, and the kid in need gets my old phone that MD was using. I am a phone whore. I love new phones. And I especially like this one. The Impression. It tracks birthdays, which I’ve been looking for. OUTSIDE of a blackberry, because I just am not the impressed with them.

——–

Ok, the cardiology appt. Doc said his heart is healthy right now. Big sigh of relief. He said that there is a blood pressure medication called losartan that he wants me to look into. Number one, it eases up pressure on the heart. Doesn’t have to work as hard. Number two, in 10-15% of duchenne boys, the losartan actually improved muscle function. It’s a long shot, but what have we got to lose at this point?

I picked up the handicap form from the doctor today. The one for parking. For some reason, seeing him mark permanent disability really bummed me out. I know he is, but …… I don’t know. Seems so official when you see it like that.

——–

I am stocked up on headache pills, for at least a month. Bloodwork is done for my pdoc appt. Now I jus tneed to make the damn appt. I will after Ian’s appts die down. I’m doing ok anyway. Better than I was. It’s almost like Ian needs me, and I don’t have time to be crazy.

Just now starting to cool off in the living room. Our room is still a sauna. Basement is nice and cool, so the kids are fine. Ian insists on sleeping in his bed upstairs with the fan, so we’ll see how long that lasts. MG opted to bunk downstairs for the night.

I made a lab appt for me in the morning and a headache checkup appt for me in the morning as well. Got some time to kill before Ian’s appt, so I thought I’d get that shit over with. Have been having pretty good headaches lately, and she wants to see me every 6 months or so before she’ll hand out any more meds. Fine, here I be. What do you need to see? Again? and Again? Blah.

Wow, the sleepies hit all of a sudden.

It’s almost 90 outside, and it’s cooler than in here. Something happened to the central air unit, and damned if I can figure it out. MD knows nothing about it either, but he’ll look when he gets home – at 1am. So in the meantime, we melt.

Dammit, I should be used to it by now, but I’m still constantly amazed by the black cloud that follows us around.

Cardiology appt Thursday. That should be a good appt. It’s just for a baseline at this point. Let’s hope there are no surprises.

I took a shower and I feel pretty good. Just wish MD would get home. Looks like he couldn’t break away from work.

Still haven’t paid bills. I really should do that. I will this Thursday, when MD gets paid. That way I can pay this week’s too so they don’t sit for a month.

The crickets are singing. I love that sound. Too bad I can’t open up the door to hear them better. I would, but it’s still 90 degrees outside. At 9pm. Yowsa.

Today was better. I was very productive at work, and MD is going to try and come home early tonight. I miss him alot. Wish he didn’t have to work like this, but I’ve covered that bitch before. Same old song.

Got an incredible donation today. $500. Truly incredible. Received it from Shawn’s parents. He’s the reason I started Volley for the Cure in the first place. Very special people. I love them all very much. I wrote her to wish her happy birthday, and to tell her that I missed Shawn (it was the 10th anniversary of his death), and I also sort of asked her permission to change the focus of the tournament. Then I told her why. I felt guilty switching it over to Duchenne for some reason. Like I was forgetting Shawn. And Dad. I know it’s silly, but I couldn’t shake it. Asking her permission made me feel better. And so she sends this donation. Just can’t get over it. Wants me to use if for Ian. That’s all it said. So I guess I’ll fill up the tank for Thursday’s visit and the two appts on Tuesday, set aside the 3 copays, and bank the rest for the porch.  Well, we’ll see how many more PT appts he has in KC. They should be switching it to the local hospital here so it’s easier to commute. The gas is killing us.

I had a very strong  urge to tell a woman today that my son was dying. I don’t know why. I just felt sad and wanted her to know why. Much like I felt after dad died. Am I going to feel this way his entire life? Will it ever numb up a bit? Dad’s death is getting easier as time goes by, but that’s because it’s something that’s already happened. Ian is still alive and well for now. And while I will try not to dwell on the inevitable, it will color my every move as long as he still breathes.

—–

I shouldn’t blog while sad. But then I wouldn’t blog at all.

Shit weighing on my mind. Things at work. Things here. I just wish I could let my mind relax for a change.

And none of it has to do with Ian. So that’s just a bonus pile of worrisome shit on top of it all. MD is depressed that he’s losing touch with the older boys. Hell, the little ones too for that matter. He works so damn much that he is literally never home. But he has to, or else we won’t survive. His volleyball check was short as it is since he had that funeral and visitation and all that jazz. Can’t have it short again. Even $50 is a copay these days. Or gas. My gawd. I had to drive to KC three times last week. My van gets decent gas mileage, but shit, it didn’t stand a chance. Another trip this week, and one more next week. Then we should be done with everything for awhile. Well, except for PT, and I’m not sure how often we meet for that.

Time for brownies. Perhaps that will cheer me up.

We spent yesterday afternoon with mom over, copying vhs tapes over to dvds. Watched a lot of old movies. Saw a lot of dad. Reminded again of how big a void he left.

We miss you Dad. Happy Father’s Day.

He yelled mom and ran to me when I got there. Totally made up for Thursday. His counselor looked sad to see him go. She just kind of hung around when we were getting ready to leave. It was her first year though, so maybe she just wasn’t sure how to end it. Ian gave here a hug and said goodbye. He didn’t want to watch the slideshow, and that might have thrown her a bit. She took a lot of pictures with the cameras I packed.

Ran to wal–mart after I got back into town to pick up a few things. Was sunny and hot when we walked in. We went to the bathroom, grabbed some hamburger patties, and started to walk out. But there was a fucking monsoon going on outside, so we just sat there and watched in horror as the wind blew some heavy ass rain in through the doors and as people flung themselves in from the rain totally soaked. They looked rabid as they came in. Scared and rabid. Crazed. You couldn’t even see the first line of cars because of the rain. Then the manager came over to the greeter and told her to get everyone standing in the middle foyer area into store and he was going to herd everyone else toward the back of the store. Said there was a tornado warning and 80 mile an hour winds were on the way. I immediately thought of my kids alone at home and said — uhuh. THe greeter told me to run to the car and she’d watch the kids. Wow, was that a trip. I have never been in rain like that. It stung my chest as it hit. Stole my breath and slammed into my face so I couldn’t see. I finally got to the car, accidently hit the button to open the hatch, suitcases flop out, I have to get out again and wrestle them back into the car. Finally get them to stay put so I can close the back, hopped back in the van, and realized that not one inch of me was dry. Drove to the front of the store, opened the side door, and saw two wal–mart ladies carrying my kids to the van. I hop out, help the kids in, close the door, hop in myself, and drive to the back of the parking lot. Then I caught my breath and was thankful that shit was over. So I start the 15 minute drive home, and my gawd…. It was raining so hard I could barely see, so I went 20 miles an hour with my hazards on. Got 10 minutes out and the road started to take on water in every low area and on the sides, so I drove down the middle. Got in town and the cops had the road blocked at 3 of the streets I tried to drive down. I finally took a big loop around town and found a street that led me home. By the time we got there, the rain was dying down. I went around the yard picking up trash that was thrown about. Picked up the toys and the trash cans out of the alley. Found the chairs that were on the porch. Found the grill cover in a mud puddle.  Yard was a wreck. Trees uprooted. Branches everywhere. Mess.

So it’s been a long day. I’m tired and I want to go to bed. But I can’t because the kids are wide awake.

MG is asking questions about Ian and MD. She wants to know when he’ll get better. So I tell her that he probably won’t. She gets real sad. Said she’s going to make his life special. That she’s glad he got to go to camp. It’ll be hard on her to know the truth.

It’s hard on me to keep it from her. I will, because she’s young and deserves the bliss of ignorance, but it’s hard. She’s asking so many questions. I don’t know how to answer without flat out lying, and I hate to do that. So I’m telling her that he might do this and he might not do that. I just hate lying to her. She’s going to need to trust me in life, and fibbing to her doesn’t pave the road like I need it to.

I’m going to go lay down on the couch. My head is pounding.

I pick up my baby in the morning. Hopefully he wants to come home with me.

I haven’t paid bills all month. Not sure what I’m waiting for. Just don’t have it in me to wade through the stack over there and pay them. I usually have shit paid way in advance. I better get my shit together.

Shirts are ordered for the tournament. Hope they turn out ok. Should get them in a week and a half. Got a light steel color with white graphics.

Oh shit, I forgot about Eclipse. MD will want to go to see it. So will I, but he’ll want to go more. Love that man.

I’ve nothing really to say that isn’t depressing. So I better go ….. shit…….guess I’ll take another bath. I’m a clean mothertrucker.

Jill asked about the other kiddos. I have nothing else to do.

MB1…. still alive. I haven’t killed him yet, although some days I think I just might. He quit his job, so now he has no money coming in to save for school or a new car. Brilliant. Says he’s getting a new one. We just don’t know when. He frustrates me to no end. Hope he’s counting the days, ’cause January 1st is fast approaching, and MD isn’t kidding. Either he straightens up his life and goes to school, or he’s out. Not sure where he’d go, but we can’t allow him to live here forever without a degree, without a job, and without any drive to improve his life. If he wants to fucking piss his life away, he can do that anywhere.

MB2…. was offered an mgmt position at work. He was going to quit after he found something else, but this changed his mind. Hope they stick to it and not dick him around like that last place did. He transferred to another Sonic if I didn’t mention that already. He’s all set and ready to go for school. 15 hours. Well, 14. He dropped the orientation class. I hope he’s excited. I am.

MB3…. is working at the volleyball place one or two nights a week, and every tournament. Also babysitting for me during the week. Keeping ten dollars for himself, and socking the rest away for a car. Smart boy. He turns 15 soon, and will start to learn to drive. It’ll take a year to save up for a car, so he is wise to get busy saving.

MB4…. amazing, mb4 used to dominate my thoughts. I used to agonize about his future. Now I am just thankful that his mind is the only thing that’s ill. Nothing that a few pills can’t fix. No fixing the spectrum issues with a pill, but they are getting better. Sort of. Nothing we can’t live with anyway. He did really well in school, and is off to the middle school in August. Big boy now. I need to get him a cell phone, but they only allow 5 on a plan. MB1 needs to give his up and get his own plan. That’s what will happen here in the very near future. Ok , not so near, but on his 20th birthday, it will. SLowly make him pay his own shit. I think that’s fair. Maybe on his 21st, we’ll kick him off the car insurance. He pays it all now though, so I guess that won’t help us at all.

Anyway…..

MG …… my baby girl. Turning into a little girl more and more every day. Thinking someone might need a training bra soon. Scary. She is starting to show an interest in barbie dolls too. Never has before. Thought she was going to skip over that doll part of girldom. Guess not. Other than that, she’s still a sweetheart. That will probably change once puberty takes hold, but I’m enjoying it for now.

Ian ….. my little independent man. No fear.

I hope that never changes. I need to learn from him how to not be afraid. Life is a scary sonofabitch, and every year it seems to bite harder. I don’t have it in me to bite back anymore.

This kiddo update turned depressing. Guess I should take a nice bath and try to shake off the willies from the day. Seeing him in that wheelchair really got to me. It’s like a horrible nightmare is slowly coming true and there ain’t nothing we can do to stop it.

Ok, I’m outta here.

Well, he cried when he saw me. Not in a good way. He didn’t want to go with me. He wanted to ride horses. I was stopping him from riding. Mean me. His aide talked to him and told him that they would ride when he got back, and then he stopped crying. Not good for my ego.

——-

Wheelchair fitting went ok I guess. Nurse went over the medical side of it, and the retailer went over the …. wheelchair part of it. They worked together to construct a chair that fits his physical needs. He picked a bright blue color. He only gets one per the insurance company. Not what they told me, but oh well. Guess he’ll actually go to school in it.

Ian hopped in the model he brought, and it made my stomach heave.

Then he rolled around a bit, and she told him to turn around- so he did. Then she said to turn in a circle- so he did. It might not seem like a big deal, but it would take me some time to get the hands working just right in order to turn like that. He did it like he was born to ride in a chair.

I guess in a way he was.

Barf. I hate it when my mind says shit like that.

Anyway, he wanted to take the chair home, but the guy told him that he was going to build him a better one. Ian just beamed. He wants his chair so badly. Because it’s a cool toy or because he’s tired? Both? I don’t know.

I just know it makes me sad.

Pick up Ian tomorrow for his wheel chair fitting. THen I take him back to camp. If he goes. No reason to think he won’t. He’s obviously forgotten all about us.

I’m so damn tired.

MD was offered another evening job. Hate to get into specifics, but it might mean moving the tournament. Ugh. Where we would move it to would be a new place. Untested. Unknown. Might do real well as the first ever tournament at this location. THen again, it might flop. I still need about 1300 more to make that porch/ramp a reality. Don’t think we’ll be widening doorways this time around.

Damn, I’m tired.

I brought back over 100 ink pens from the seminar. Pens give me a hard on. I sat and tested each one. The bottom ones went to the office today in a bag to pass out to coworkers. Such a nice guy I am. The top 15 went into my purse. The rest are hidden. No fucking way are they to be used by someone who doesn’t appreciate their worth.

Wow, so very tired.

The hotel we stayed at had a brochure about the visitors you might see in the rooms. Tarantula. Scorpion. Black widow. Recluse. Geezus. Then we’re talking before bed, my boss and I, and this tiny spider strolls across the bed. I freak the fuck out and smush it, and she tried to give it an autopsy to find out what kind it was. All I know, is that I didn’t sleep a wink that entire night. I kept my mouth closed, and I woke up every hour. I finally got up at 4am and took a shower. That’s when I tested my pens.

Don’t you wish you had my exciting life?

Guess I better take my tired ass to bed.

I’m back from the Ozarks (seminar), and Ian still is at camp. No word from him at all. I miss my baby.

Leaving to take Ian down to camp here in a few hours. I’m nervous as hell, but he’s calm as a cucumber. What does that mean anyway? He’s all packed and ready to go. I’m all packed and ready to go as well. I hope I can remember to take pictures when we get down there to drop him off. I’m glad the camp was free, cause it took an unmentionable amount of cash to get him ready. Last thing was a robe, which I couldn’t find anywhere. Finally tried the local DAV’s, and bingo = one for $2. Perfect.

——–

Went over to MD’s friend’s house last night to watch the UFC fights. He works for the cable company and gets them for free. And to make my night, my man Rich kicked that ass. I like Chuck too, but Rich is dreamy. If you don’t watch UFC, you should. For him. Him and Forrest. Yum.

I cannot stop eating. Which is why I cannot stop gaining weight. Damn amazing how that happens.

MD and MB3 are gone at a volleyball tourney. These people are going to be burned out by the time it gets to ours. Which reminds me, I have to write up the registration paper soon. I just can’t seem to do it. Lay it all out there for people to read so that they understand how important it is. We’re talking about my baby boy though. Writing it down will make it all too real that it’s happening to my son. I haven’t even written it all down here. Cause I can’t. Going to have to step up though. Somehow.

So he doesn’t show up after another 30 minutes go by, so I call. And he says he’s on his way. So I wait another hour. And I call. And he says, come get me please. He’d had too many to drink. No shit. Better to beg forgiveness than to ask permission, ay? Yeah, I was hot for awhile. He wasn’t thinking about me and whether or not I’d be worried about him not showing up TWICE. But I’ll let him slide given the circumstances. Will say that I hope his head pounded this morning with every step that he took.

Anyfuckingway…

The drop off for camp is Sunday. I go out of town on MOnday and TUesday for a work comp seminar. Wheelchair appt on Thursday. Pick Ian up from camp on Saturday. Busy Busy.

I’m so tired. I hope the kids go to bed early.

K, he called. Boss took them all out afterward.  Said he was on his way in a sec. That was 30 minutes ago.

I’m still angry.

I had to go with MB2 to his college registration today. Didn’t get home until 4. MD had the funeral to go to at 2, so I couldn’t go with him. Instead, he went with the guys from work.

Now I sit and wait for his ass.

He isn’t answering my texts nor my phone calls. It’s been 4 and a half hours – isn’t that enough time for a funeral? Starting to get worried. Then he’s going to call to say that they stopped somewhere  to drink and talk.

And then I’m going to kick his ass.

He could at least answer the fucking phone. Worry is starting to share the stage with rage.

I told him he wasn’t going, and he cried. So I said – but I’d miss you too much. So he said – it’s only 6 days mom.

So he’s going. I got the app filled out and the doc faxed over the physical and he was accepted this afternoon.

Gawd help me. ‘Cause I’M the one who’s going to need it. I have a feeling he’ll be fine.

But if not, she said I can come get him. And I have to get him Thursday for his wheelchair fitting anyway, so he might want to come home then. Or he might boot my ass out the door so he can stay the last two days.

We drop him off Sunday, and pick him up Saturday.

Gawd. Gawd.

I got most of his supplies – at the dollar store. I love that place. Still have about ….. ?? $50 to buy? I don’t know. Still need beach towels and semi-formal clothes. And dress shoes. Maybe $100? I hope I can find something for cheap. Especially since he’s going to wear it this one time. The towels we’ll use though, so I dont mind that. Still need a few other things, but they should be cheap.

I want him to make good memories while he can. I know he can go to this camp even when he’s in a chair full time, but it won’t be the same as now while he’s totally mobile. In my mind anyway. So, he’s going.

—–

Visitation is tomorrow, and the funeral is Thursday. Joy. These things really make me uncomfortable. I’ll go for MD, but I’m not going to like it.

—–

Thanks Paula!

The camp has 60 boys, and 25 of them are between 6-9.

I just don’t know.

Thanks Elizabeth!

———–

Ok, I think I have the pj problem worked out. I have 3 pair, so I only need 2. And I have all the clothes packed already, except the dress up shit. Worry about that later.

He really wants to go. Said he’ll give me a huge kiss on Sunday to last until Friday. So I think he understands that this means one week. I have to pick him up Thursday for the wheelchair fitting, but they said that was no problem. And if he wants to go home at that point, fine. But if he wants to stay the last night, he’s more than welcome.

Then she said when all this camp biz settles down, she’ll meet with MD and I about their services. Some evening. So we don’t have to miss work. Lovely gal.

———–

MD talked to a fellow v-baller tonight. He’s a carpenter of sorts. Does a lot of things actually. Said he’d love to help us widen doorways and turn that garage into a room when we have the money available. Might take 5 years, but I’ll have the money. Dammit.

I’m snacky. Probably why I’ve gained some weight back. Dammit.

I’m confused. I was contacted by the MDA today. The local chapter. Yay. Sort of. I mean, she was great, but she told me all about the summer camp for MD kids and got me all excited – then she said it was next week. She can still get him in, but I would have to get all of the supplies before Sunday.

There are a lot of supplies.

Well, like pjs for instance… he has pajamas, but not pjs that you’d wear out anywhere – even camping. Tank tops with sport shorts. Comfy shit. But it doesn’t match. His winter clothes match, but not the summer ones. So I’d have to buy pjs. And how many pair? 5? Egads.

Then there are clothes – no problem. I can handle the clothes. He has tons from his cousins. And shoes, he has tennis shoes and shower shoes. Wait, shit, he doesn’t have dress shoes – or semi-formal wear. What is that anyway? For a 6year old? They have some sort of dance that the kids dress up for. Great, but Ian grew out of the only dress up type shit that he had. I don’t  buy stuff like that unless I have to. Guess I have to.

Sleeping bag. We have 6. But none of them tie anymore. Does that matter? I bet it does. I don’t know. Would I have to buy another one?

Flashlight – he can’t take the one we have, it’s too big for him to carry. I guess they’re cheap though.

Sunscreen – would have to buy more.

Camera – disposable.

Beach towels – we have regular towels.

Mirror – wtf?

Batteries.

Robe – wtf?

Insect repellent.

Rain Gear – wtf?

Blankets – ?? If he’s using a sleeping bag, why the blankets? I have some, I guess. Trying to think of what kind they’re talking about.

Toiletries. Could buy travel stuff?

That’s just some of the shit on the list.

———

BUT!!!!!!

It’s a whole week people. Can I let them take my baby boy for a whole week? THAT’S the problem. My stomach is in knots. They have a special camp for kids like mine, and I can’t let him go. Or can I? I asked him about it – he wants to go. I told him that it would be a week without us (gawd), and he said he’d miss us, but he still wants to go.

The application is 13 pages long. They go over every detail. Each kid is assigned a helper. They have all the bases covered.

So why do I feel sick inside?

Friend of MD’s was killed last night in a motorcycle accident. They worked together. We got the call at 3am.

I long for an uneventful life.

Happy Birthday Jen!

This was Ian’s playlist for this morning.

I love this boy.

I really just love you all. Seriously. You make this shit bearable. You and the alcohol. Kidding.

Sort of…

——–

MoodyNephew is over here tonight. I can say MoodyN fo sho because he is bipolar. He doesn’t take his meds, but we’ll work on that. He’s such a little shit to his mom, and yet he’s on his best behavior here. Perhaps he’s afraid of the dragon. Wise boy.

Anyway – sis? I have your boy, and I’ll do my best to show him that it ain’t all bad to take meds.

——–

MS will be here next week for good. Makes me happy. We can share mom.

——–

I am fighting the urge to drink lately. MD came home last night and I jumped on the chance to have a few coolers since he was home for the kids. I didn’t get drunk or anything, but I sure did enjoy them. I actually like the taste of those melon limeade coolers – delish. Too bad drinking every day is frowned upon. I could really get in to it for some reason.

Shit, I know the reason. And I’m trying to deal without the sleeping aids (which I haven’t used in over a month) and the drinking. I bought a 24 pack a month ago at sam*s, and I have ….. 18 left. Guess I’m not such a lush, but I’d like to be. Think I’ll have one tonight after the kids go to bed. Is that bad?

——–

This desk is sticky. Gross.

——–

……. if I stop typing, I have nothing to do. I wish I had some IRL friends to call at this hour.

——-

Need to tuck in the girl….

——-

Guess I’ll go play bejeweled now. Good night.

Thanks Nancy. I’ve missed you.

——–

They cancelled his PT appt today. Rescheduled it for the 16th. Work is going to love that. I was already gone for the day, so I just stayed away and played with the boy. I was going to work tomorrow, but MB3 has plans. So I have no sitter. I got 37  hours anyway, so I should be good. I’ll try to get more next week to make up for it.

——–

It’s fucking hot.

OMG. Thanks Sandra.

———-

Don’t you think we should have a fence before we even think about getting a pool? I mean a cheapie pool from walmart. The kind that either blow up or snap together. But I have nightmares about finding the neighborhood kids floating face down when I get home from work. Not like we have many kids in our backyard, but you know. I think a fence is prudent. IF we even get a pool.

I know they said he basically needs one. Or access to one. The Y has an aquatic center for $60 a year and $2.5 a person per trip. Sessions last one hour, and the place is set up for wheelchairs, etc. I think this might be the way to go. We could go a couple times a week, take the two other ones with us so they aren’t sad, and still only pay $10-$15 bucks a shot. I know it adds up, but even if we get a pool, we can only use it until Sept at the latest. What a waste. And I couldn’t afford one until August. And I damn sure don’t have $2k for a fence.

Oh well. MD is home tonight and I need to …. well I need to get off of here.

Pulmonology appt was today. I hope I spelled that right.  Not sure if I care.

Anyway, doc (mr gorgeous) said that Ian’s cough is strong right now, and he doesn’t need CoughAssist. Not for awhile. Said he believes the asthma and also think allergies are causing trouble. But said that he can’t give him anything stronger than the steroid he’s already taking. Said to watch and see if the coughing gets better. He gave me an inhaler for coughing fits. Was a real nice doc. We’re supposed to see him every 6 months, or sooner if needed.

I’m glad I like all the docs so far. We see the PT gal tomorrow. Driving over an hour for each appt sucks balls though. Gas and copays. Splendid. There isn’t supposed to be a copay for the PT. We’ll see.

I’m tired.

——–

Thanks Holly.

MB2 has a few friends over. MB3 and MB4 are playing the xbox – quietly. Little ones are asleep. I’m playing bejeweled and listening to Supertramp.

I can almost pretend that life is good.

Almost.

Pulmonology appt tomorrow. PT Friday. Wheelchair fitting appt on the 17th. Cardiology on the 24th. Genetics isn’t scheduled yet. They sure threw them at me all at once. Thank gawd I have an understanding boss. And a key so I can work Saturdays to make up my hours.

I emailed this group online about this cool cd they have about remodeling your house for Duchenne. Turns out the group is in London though, so I didn’t think they’d respond. Today I got a big package from them with the cd in it, and a whole bunch of other brochures, pamphlets, and books about all kinds of shit. Breakdown of ages, phases, exercises, information, you name it. I really appreciate them sending it across the ocean like that. I have a bit of reading to do tonight because of them.

And Debbie? Thanks hon.

68 days until the tournament. Not a lot of time to get shit together. It kind of snuck up on me. I have to get the letter typed up, but how do I put into words what we’re going through? What he’s going through and will go through? Will take some thought.

———-

Anyhoooo, MD found a pipe in MB1’s car. Long LOOOONNNNGG story short, they both smoked, but not anymore. To the point where both will take drug tests every month until I get tired of giving them. Bet your sweet ass they will, and they’ll pay for them too. They both got the lecture. They both got it in the end – I hope. MD was livid. Me? Not so much. Kids will try shit. You just hope they try it and move on, and it seems like ours did. MB2 did anyway. MB1 had just given it up. That’s why his grades slipped so much and he wasn’t going to school. Hope he’s learned that lesson. MD told him that he has 6 months to get his shit together. If his grades don’t improve and we don’t see him actively trying to get it together, then he can ruin his life elsewhere. If he doesn’t want to take advantage of the opportunity to go to school – for free, and live damn near for free, then he can go grow up and start his life on his own. I guess I agree with that. I don’t think it’ll come to that though. He was crushed that he let us down. He said he’s pulling his head outta his ass as of today. I hope so son. I hope so.

It’s been a stressful day. I think I’ll take a long bath.

Oh, and guess what we found? A pipe. In someone’s glove box.

Still processing the events of today. But first, a sandwich.

Older boys are out and about. MB3 is camping with a friend. Three youngest are with my friend overnight. MD is at work.

And here I sit. Alone. Without a thing to do. Or eat. What do you eat when it’s just you? Anything you want? Maybe I’ll go grab something. Better than sitting here.

Going to the lake today. Everyone should have a blast. I would if I wasn’t worried about money. It’s always money. They shorted MD’s check by about $100. Might not be a lot to some, but that was gas money and such around here. We’ll be alright, it’s just going to be tight till I get paid next week. I wanted to try that oralflo cup, but I guess I should wait to order it. Fucking volleyball people. He worked 6 nights. SIX nights, and they paid him an average of $30 a night. Doesn’t something seem a little wrong there? Yeah, I think so. THey don’t though, so we might have a problem getting the money back. MD needs to track better hours going forward.

I can’t find the paperwork the hospital gave me about the test results. I need those to show the school. Dammit. I hate it when I put shit up for safekeeping.

I checked with the doc about wheelchairs, and he suggested two manual ones instead of a power chair. He said that a 6 year old should not have access to a power chair. Not safe for the people he lives with lol. And he said that we don’t want to make it too appealing for him. He needs to stay out of it as much as possible. The more he’s in it, the more his muscles aren’t  being used. So I looked up manual chairs, and we should be able to get a decent quickie chair for home and a regular manual for school and still have enough for braces.  There is a $5000 limit a year on medical equipment. I talked to them though, and she said there’s no deductible and no requirements needed. Just have the hospital bill them and they’ll pay for it. Now when he needs a powerchair, there is a precert? But she said it’s just a formality in cases like this.

I also picked up the form for a disabled parking sticker. I figured I have some time before I have the doctor fill it out. I’ll get it done before he gets his chair though. As dumb as I’ll feel using it. The ONLY reason I would would be the room the disabled parking gives you to get the wheelchair in and out of the car. Other than that, we could walk. ANd he could ride.

Alright, Ian is bitching about his swim trunks. Guess I’d better go figure out what the crisis is.

Took Ian to his old pediatrician today. He used to see him, but then it got easier to use the clinic here in town. But if I would have taken the time to drive him, Dr E could have diagnosed him years ago. Didn’t take but a second for him to sadly nod his head and agree with the docs. He has access to the medical records at Children’s Mercy, so he can see everything they did. He talked with us for over an hour. I remembered how much I liked him.

He told me little things to watch for and said we’ll be aggressive with colds and flus and such. He said to keep him out of school during outbreaks. He said to get the paperwork now for the disability sticker for parking. He said a lot of things I didn’t know about steroids.

Then he said he was sorry that my little guy was facing this horrible monster.

Me too.

I’m bored. You’ve been warned.

They are destroying the road in front of my house. I have nowhere to park. I have to drive up the alley and park in my back yard. Classy. The alley ripped the muffler right off of MB1’s car. He is now carless and moneyless. Bad combination.

Speaking of MB1, he screwed up so badly the first year of school, that he lost his scholarship. Nice, eh? I don’t have the money to send him, so he’s going to have to save this summer in order to make it happen. I don’t see that happening. I don’t know where I went wrong with that boy. He swears he’s going and he’s going to pull his head outta his ass this year. I hope to gawd so. Otherwise his ass is getting a real job and he’s going to pay real rent. No joke. In this house, you either go to college and continue to be our dependent, or you get a job and start living your adult life.

Just makes my stomach ill thinking about it.

I was told that SSD was only for people over the age of 18. That you have to be of working age to claim regular disability. That’s why little ones get SSI – only that’s income based, and we make too much. What I have read seems to back that up?

Denied SSI. We make about $5K too much a year. If MD kicked his volleyball gig to the curb, we’d qualify, but we’d lose more than we’d make.

The real shitter is not getting the medicaid. Medicare. Whatever. I was counting on that. How are we going to pay for the appts and the wheelchairs and the braces and the house renovations and the car refits and the ….. and the…… and the……

Damn. Just damn.

On a happier note, looking at wedding dresses makes me  happy. I think I like this one better.

Ok, this child throws up even the best tasting medicine, and he now has to take an oral steroid (nasty tasting pill), liquid vitamin D3 (yummy tasting berry),  and he has to chew 4 tums a day (chalky but not so bad). He threw them all up. I tried slipping the pill in some marshmallow fluff, but he chewed it! THen he made this horrible face and vomited. Nice.

We’re going to try it in some pudding next. Maybe some jello. SHe said I could crush it and stir it into something, but what?

—–

They said the steroid will help his lungs as well as his legs. That’s good. I hope it stops him coughing.

—–

I’m still in shock. I can’t believe this is happening.

They are going to set up an appointment with the cardiologist and the pulmonologist (sp) for a baseline. They think he has asthma, add in the constant flu and pneumonia, and he’ll probably see the lung doc pretty regularly. That scares me.

They had him scheduled with one doc and then cancelled it and switched him to another doc. I found out today that this particular doc is the chief of the rehab clinic. Why they switched him around to see her worries me. I’m glad he’s seeing the boss, but it scares me.

They said they measure ambulatory phases by several things, one of which being how they handle stairs. First it’s normal with no help, then it’s one hand on the railing, and then it’s two hands pulling themselves. That’s what he does.  So either way, he’s due for at least part time help with mobility. The less mobile he is, the faster the decline is. That scares me.

They talked constantly about quality of life. They focus on living. They hope they can find a cure in my child’s lifetime, but in the meantime they will focus on helping him enjoy his life. That’s great, but I want the cure. They said some kids choose not to have the ventilator or the tracheotomy (sp) or  the feeding tube. What then? They didn’t answer. It scares me to think about Ian refusing and fighting us about what’s best for his care.

They gave us literature for the school.  I hope they read it and take note. They said they will help us as much as they can to make sure the school steps up and writes the IEP in a way that will actually help him. It scares me that they will half ass it like they did with Carson.

They talked about clinical trials and new drugs and how there is promising  research being done in terms of retinal dystrophyn and others. It scares me that Ian won’t qualify for any clinical trials or that he WILL, but will be in the control group and won’t actually receive the medicine.

I’m just scared.

Kids this little don’t have Beckers. I knew that in my heart. They just answered questions and set up appointments and I just cried. How brave I am. They did cover a lot of information, about their services, clinical trials, what’s the latest research, etc — but no one said they could cure my little man.

I asked when we would know when he’s ready for a wheelchair part time, and she said probably now. That he sounds like he’d be a lot happier if he could enjoy the destination without suffering the pain of getting there. They called it a Freedom Chair. I can see her point, but I really wasn’t expecting it so soon. They are going to get his fitting scheduled because it takes 6 months to get one made. I guess they design it for the child given their special needs.

More later…… Ian wants on and I need some headache medicine.

I’m really nervous about tomorrow. I’m afraid that they’re waiting until we get there in person to drop a bomb on us. I’m not sure what else they could possibly tell us at this point that would make the situation worse, but tell my stomach that. It’s in knots. My friend is going tomorrow too. Maybe she’ll push them into a sooner appt. The MDA has a clinic at KU, so maybe that’s where we should be taking him. Maybe they have trials that he could get in on. MD wants to try the Mayo Clinic.

I just want someone to fix my baby. And I have a feeling that just ain’t going to happen.

Extraordinary Measures –

I didn’t know what this movie was about when we rented it. I bawled through most of it. I liked it though – happy ending. I hope Ian gets a happy ending.

Still busier than shit at work. Got a key though. That makes me happy. Now I can come in on Saturdays and make up hours missed by wee one’s appts. Or work late. Or come in early. Whatever. I know it makes some people mad that I got one and they didn’t, but I guess they should step up and take on shit like I have. Still wish I wasn’t QUITE this busy though.

Grad party tomorrow for MB2. He asked if we were having one, and we said ….. SUREEEEEEEEEE!!!!!! $200 later, we have a party in the making. Good thing MD has been working those extra hours. Oh well, you only leave high school once. Shouldn’t be too many people. I hope. I only bought 20lbs of pork ass. I hope it’s enough. Gawd I hope it’s enough.

Appt Monday is making me queasy. I still haven’t written down a list of questions. I don’t guess I need to. All I really need to know is how bad is he, and why is his appt so far away. Everything will come to me. I guess. I don’t know. My brain is trying real hard to hold it together, and this appt is making it all too real again.

I want to get remarried on our 25th anniversary. I have 5 years to save and plan. I have a sister and 3 friends, and we have 4 older sons. That’s a perfect match for bridesmaids/groomsmen. MG will make a great flowerteenager, and Ian can be the ring bearer – even in a chair. I want From this moment as our wedding song. And You’re still the one for our first dance. I want pale yellow bridesmaid dresses – all different styles. I want this dress.

I want I want I want. Whew, that’s a lot of wants. But I want this really bad. And I think the 25th is a perfect opportunity for it.

Now to just bide my time waiting. So mark your calendars – either the 3rd or the 10th of April, 2015. Be there.

Monday is getting closer. I dread it.

Ian fell off the slide today. Just got weak while climbing up and fell off. Landed flat on his back. Knocked the wind out of him and scratched him up pretty good. Nurse is not wanting him to go down the slide again. She wants me to ask the doctors Monday if there are things he shouldn’t be doing anymore. I’d hate to start limiting his activities, but man. I don’t want him on the jungle gym either. I can see a broken neck on that thing. And him falling is a done deal. It’s not a maybe.

MD is working every night at the volleyball place for the next week or so. I miss him.

I guess I’ll just go to bed. Nothing else to do.

Wow. What a busy day. What a busy day I’ll have this week. I have to finish processing the insurance paperwork for 8 more stores, BEFORE I do payroll tomorrow afternoon. Then I have to pay the insurance bills, which takes about an hour a piece and there are three due. Then I have to finish updating the 4 spreadsheets, process two new hires, terminate 5 employees, and file over 150 election certificates into the employee files. I can’t even think straight right now. They are giving me a key though, so I can work late when I need to, and work on Saturdays to make up hours I’m going to lose for Ian’s appts.

Which btw, aren’t going to happen for a very long time. We go on the 24th to meet with the dept heads about his diagnosis, but his appt came in the mail today — NOVEMBER 15th. Can you believe that? He’ll already be 4 months into the new school year. That’s 6 months from now. SIX MONTHS. I hope that they aren’t seeing a need to rush into steroids right now, and that it’s not just a matter of them being busy.

Ok , off to bed. Want to get tomorrow over with.

More shit news on the family front. Can’t share because she doesn’t want me to, but if you could keep MS in your thoughts, I’d appreciate it. No, it’s not cancer. But it’s shit she doesn’t need right now.

———

I can’t remember the last time I fixed a meal with vegetables. I really need to get it together. I can’t let the family suffer because of this nightmare we call life has thrown us a curveball. I need to map out meals again and get with it. Start making bread again and buy some potatoes. Why does my mind feel so tired? Too tired to tackle mealtime?

———

I did catch up on laundry though. With two/three loads a day, it’s hard to stay on top of it, but for right now – this moment – it’s caught up.

———

They sent me Avatar. Good movie. I’m glad we have it so we can watch it again. Wasn’t what I expected.

———

I can’t shake these headaches. I know they’re just tension headaches right now, but they kick the migraine beast and then it’s all over. I ran out of pills again, and I just know the doc ain’t going to be too happy about refilling them so soon. Gonna ask anyway.

———-

MG is blowing bubbles right now – in the living room. I’ll be mopping up the floor before MD gets home tonight.

Wee one is chalking right now – on our unfinished walls in the kitchen. I’ll be scrubbing that shit off tonight before MD gets home.

He’s going to think I’ve lost my mind.

But I think I have lost my mind.

I responded to a freecycle post. She gave me her address and said she’d save them for me. Told her I would be there shortly.

Get the kids in the van and drive 20 minutes to the shitty part of town where I thought she lived. Realized that she lived on south and not north, and set out for another 15 minutes driving to the opposite part of town.

Finally get there and she tells me that she gave half to someone else. Nice.

Drive all the way back home to find out that these “very nice clothes” are so fucking ugly I cannot put it into words. I was able to keep 3 of the blouses. The rest looked like……. my hell, just ugly. I HATE freecycle sometimes.

———

MD is working every day and every night except for Saturdays. Then he only works during the day. So I get him home one night a week now. She wants him up at the second job because they have been having some trouble. He usually pulls security up there on Fridays, but now he’s doing it 6 nights a week. I miss him. We need the money, but I miss him.

Ian fell asleep at the reception (at eight) and wouldn’t budge even when the band started playing. We left because my arm was falling asleep holding him. We’ll see how long he lasts tomorrow night at P’s reception.

I need to ask if his being this tired is a sign of …..  something. Other than that, I don’t know what to ask at the appt.

Feel like I’m in a daze reading through these sites on Duchenne. I’ve had the links for a month, have been reading them for a month, but it was like I was reading it for someone else before. Now it’s for me. For him. For real. This is for real and there’s no going back now. No fooling. No fucking around. This is our new life. With Duchenne. Life with Duchenne.

——

Have  a wedding reception to go to tonight and tomorrow night. Cousins getting married and all that jazz. Kids should have fun.

I won’t have fun again for a long long while.

Begin massive Pity Party here.

I put him to bed a few moments ago, and he told me that he wants to be a fireman when he grows up.

I smiled and said that’s a wonderful idea.

Then I went and threw up.

Can’t cry anymore tears. Just sort of numb right now.

—–

I called up there at exactly 8am, and left a message for her to call me on my cell. Probably not a good idea since I was at work busier than hell, but I couldn’t wait any longer. She called at 9am, and told me that the results were positive. She made an appt for MD and I to go up there and talk with the department heads on the 24th. I don’t think we’re to bring Ian. It’s just for information and questions. I don’t have any questions. I’m burnt from reading this past month. I’m sure I’ll ask some things, but right now I am pissed. So very pissed. I want to know why. And yes I’m going to whine a bit. Why do we have to go through so much shit? When is enough, enough? When do we catch a break? When can our family breathe a sigh of relief for a change? How much can one family handle before they crack?

And please don’t email me and tell me that there are those worse off – I know that. I know that we are so very fortunate in many ways, and that there isn’t a universal plot to destroy us — but it sure feels like it sometimes, and right now I’m very hateful. Give me a moment to be hateful. To not make sense. To be petty and small.

——-

I worked my ass off today after I hung up. They wanted me to go home, but I had so much shit to do. Still do. I’m so far behind on posting stores thanks to open enrollment, it’s beyond words. And it’s not likely to get better anytime soon. I have a payroll class tomorrow. More open enrollment on Monday, Payroll on Tuesday and Wednesday…….. should be posting stores again come Thursday. On the 20th. Should take me about 5 days to catch up. Too bad statements go out on the 19th – AFTER all 12 stores are posted. Are you following the math here? Statements bring in money for payroll and bills.

I hope that others chip in and help post while I’m gone. I really do.

——-

I haven’t paid bills or opened mail or cleaned house lately. I just don’t have it in me. Sure as hell don’t have it in me now. I paid MB3 to cook dinner, give baths, and take them for their walk tonight. I just couldn’t.

I need to snap out of it and get back to living. Diagnosis is in and there ain’t shit I can do about it. Time to do what needs to be done. And that means getting off my ass and taking care of business.

But maybe I’ll start tomorrow.

Positive for Duchenne.

I’m not sure whether I should go to bed now and make tomorrow get here quicker or stay awake as long as I can so that I can remain in the dark just a little bit longer. Not sure whether to have hope or not. Not sure whether to pass out or puke.

I’ve jammed my brain with so much Duchenne, that I’m damn near an expert. Ok, not really, but I know it pretty well. If they tell me it’s NOT Duchenne, I won’t know what to do. Other than jump for joy that is.

Going to try to go to bed. Not likely to happen, But I’m going to try.

I just noticed that the hospital called – and I wasn’t home. Now I get to feel as if I might faint for the rest of the night. Till I can call them tomorrow. Damn. WHy wouldn’t they call my cell? Why don’t I have a machine? Damn. Damndamndamn.

Dammit

Ian has been sleeping more. He’s been taking a nap when he gets home from school, or he goes to bed around 8pm. That’s about an hour early. He just started doing it.

He’s been falling a lot lately. More so than usual. His legs just give out. Or he trips. His poor knees have had it.

He’s having a hard time clearing his throat. I don’t know if that’s related, but anything respiratory related is going to have me on my toes. Although the throat thing is new, his history with pneumonia and the flu isn’t a new thing. He’s always the one to get sick.

The fevers – out of the blue – have me worried.

He’s so very tired lately when it comes to walking. He wants to be carried up the stairs. He wants to ride in the wagon from the get go, instead of walking first and then catching a ride halfway through.

——–

I’m just so damn ready to know already. Just tell me so we can cry and yell and cry some more – and then get busy living life.

Or tell me that this is all a bad dream and he really has some innocent muscle disorder that he’ll have for the rest of his long happy life.

But just tell me something. Soon.

This weather is going to be the death of me. Every night we have a thunderstorm, MB4 makes sure I am awake watching the weather channel to make sure there isn’t a tornado. He said that most people die from tornadoes at night since they are sleeping, and don’t get the warning, so I have to stay awake to make sure I know about the warnings. Tomorrow we’re having more storms. Wonderful. His pdoc tried to tell him that the area we live in doesn’t usually have tornadoes, but she also mentioned that the outerlying towns do – and she forgot we live in one of those towns. Genius. So now he’s even worse.

She suggested a psychologist, but I can’t remember her name, and there isn’t ONE listed in the phone book. There are a few psychiatrists, but no single people listed. Just groups. Oh well, I figure something out. I need to find one that does CBT so that MB2 and I can get off of this OCD medication. If it works.

——

Still no word. It’s been almost 4 weeks. My stomach heaves every time the phone rings.

——

Did my first open enrollment yesterday. Wasn’t too bad. 4 more stores tomorrow. I will know more then about what to do. The first few stores were like practice. I forgot to have a few sign some papers, I forgot to have some fill out new paperwork, and I forgot to tell some that their life insurance premiums were going up. Go me. Hopefully I do better tomorrow. I have one spreadsheet updated, only 4 more to go. Every file has been updated, but I have to go through next week and add AFLAC to those interested. That will take some time as well. Yay.

Wagon pics in the gallery. Got one happy little boy on my hands.

I started reading the archives a couple of nights ago. Just started in 2005 and read on. I should have started in 2002 – maybe I’ll go back and catch up on those years as well. It’s quite an experience to relive life like that. Everyone should have a blog. Everyone. But only if they are going to treat it like a life’s journal, and not some ego-trip look at me shit. I relived MS’s ordeal, dad’s ordeal (although I’m not finished with his, sadly I already know the ending), and my journey through MB4’s dx and my dx. Not to mention the following months where the medication roller coaster began. I guess it’s finally almost over now – 5 years later. Still working out the kinks on the anxiety/ocd, but the bipolar has been under control for awhile. THe only time I”m depressed is when I stop taking the pills. So I shouldn’t miss, eh? Makes sense.

Ian seeing the wagon on the porch when we got back from the store.

The pile of wagon parts stacked in a neat pile for MD when he gets home because the directions seem to be written in some strange language that tool challenged folks like myself do not understand.

I will take more pics when he’s going for his first ride today.

Again, thank you Leslie.

And again to Rose and Elizabeth as well.

I better get off of here before I start bawling again.

MS’s little boy has Crohn’s Disease. He’s only 11.

You know, this family’s drama reads like a horrible soap opera.

Today was a bitch. I spent 4 hours filling out the insurance information on everyone – well, half of everyone. Then I was going to stop for the day around 3 and go home. Then M comes out and tells me that she switched the Friday open Enrollment from  to Monday. That’s the first of 4 days. I wasn’t prepared to have everything ready until our first one Wednesday. After that, I had to run around and get copies made and supplies packed and then I had to go through and pick out the stores we’re doing MOnday and fill out their information sheets. I’ll have to do the rest on Tuesday I guess. And the dental packets have the old rates and the new booklets won’t be here until Tuesday. So I was scratching shit out and making new copies and omg……I’m tired. I just don’t think I can do this job. There’s so much. I tell people it’s payroll and benefits, but holy shit – that just doesn’t do it justice. And how am I supposed to post stores and do payroll and taxes and child support payments if I’m gone doing open enrollment? Guess we’ll find out. I smell overtime.

Man, I used to have a bunch of pictures stored for the sole purpose of making new skins. I can’t find them anywhere. I know there was a few that I had most of the way finished. I put back up Next and Edge, but those are old. I had a cute kitty cat one …… no, seriously, although it wasn’t as cute when I got done with it. Now I can’t find it. Dammit.

It’s supposed to storm tonight, so I guess I won’t be sleeping. It’s overrated anyway. I already put the little ones downstairs in case it turns out to be a bad one. They will NOT sleep in their beds during a bad tstorm. Afraid of tornadoes and such. Can’t say I blame them.

Hard to believe I have another child graduating high school this month. I’m awful proud of both of them for moving on to college. I know how hard it must be to tredge onto another 4 years of school. I wouldn’t know because that’s not the path I took, but I can imagine.

If the skins don’t work in IE – dont tell me. Just switch to Mozilla.

Walked in to work today and my desk was decorated. Balloons and streamers everywhere. And R had made me a beautiful handmade glass ….. thingy. You know, like stain glass. It’s very pretty.

I didn’t know what to say, and they all started singing, so I just shut my mouth. THen M asked if today was my actual birthday, and J said, I sure hope so, ’cause that’s what I wrote down. And I said – yes.

I know. I KNOW. But I just couldn’t do it.

———

I have that website to do for my playgroup, the one to do for money (but not till July), and I have been working on a couple of old skins for this site – I don’t have to do any of this, but it gives me something to do. I NEED something to do.

The insurance company is changing our rates at work. I didn’t worry about it because we get our insurance through MD”s work. Then I realized today that IAM THE FUCKING HR PERSON WHO HAS TO CHANGE EACH PERSONNEL RECORD AND THE  CORRESPONDING SPREADSHEETS. What the hell was I thinking?

That’s going to take a long time, and they approved OT for me today. Not to mention that it’s open enrollment, so I have to hit each store and office – that’s 13 if you’re counting – and talk to EACH person to get them to sign either yes, keep my shit the same, yes, sign me up, or no thanks. Good gawd. All the while posting stores and doing regular HR shit. My neck hair is standing on end thinking about the enormous amount of shit on my plate. And to think that I’m going to get some sort of diagnosis this month as well is mindblowing.

Plans on sleeping were cut short. I heard a child talking away as I was getting settled in bed. I found Ian jabbering to himself and pointing to his pajamas. It seems he had wet himself and he had a fever. Nice. So I got him cleaned up, gave him some medicine, and he is now sleeping in my bed. I am in and out of there waiting for his fever to break so I can go night night.

Payroll is tomorrow. I have to go in. Have to. I guess I …… I dunno. I’ll see how he is in the morning I guess. I HAVE to go in.

Dammit.

This is what worries me. If there is a sickness – he gets it. His immune system must really suck. And he’s so small and weak and fragile. He’s not ready for a gun fight. He needs to be ready for battle. What do I do to make him tougher? He won’t be able to handle the clinical trial drugs if he doesn’t get stronger. Damn. THere I go thinking again.

Finally posted some pics in the gallery. Not much in the way of exciting, but it’s a start.

Not sure if my coworker is going to come through on the wagon or not. They can’t get the paint to stick. Whatever that means. Might have to buy him one after all. I found some at Walmart online for $70. I could have got one with my winnings had Mr Headache not paid me a visit.

I really need to get to sleep. So I will say good night.