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Archive for August, 2011

My friends live in that box.

August 22, 2011 4 comments

Maybe it’s hormonal, or maybe it’s stress, or maybe I don’t need a reason, but I’ve been lonely lately. Some of those reading this that I’m closer to know the whole story, and I’m not going to go into it in public. My relationship with my husband is secure, so before you worry, I don’t mean lonely in that sense. I could just use a buddy.

I was explaining some things to Louie and we were discussing money, along with ways to cut back on expenses. One of the first things to come up was internet. Now, our phone is tied into our internet (Vonage) so cutting it off isn’t an option. A cheaper ISP would be nice but since we live ‘in the sticks’, we’re not overflowing with options. As a part of the conversation, he said it wouldn’t matter to him if he didn’t have internet.

I explained to him that yes, I can live without internet. I just don’t want to.

I love my home. I love how peaceful the town is. I love that I can hear crickets chirping when I literally live in the center of town. This is gross, but I even love that we can smell the pig poop from the farm down the road. It’s not that I love the smell of poop, but I love knowing how close to being rural we are. There’s very little traffic. There’s a park across the street. The schools are amazing. This is exactly where I want to raise my family, because of all of these things. However, with the exception of one person, I have no friends here. That friend messed up her back while bowling with her kids and she hasn’t been leaving her house. I honestly don’t have any desire to make friends with anyone else here. They’re all either much older than me, way too different in their parenting (to the point that I’d call them bad parents because they let their kids run wild and they just don’t seem to care), or they flaunt their wealth. The woman that bought her 11 year old a Lexus because it was on sale comes to mind. I wouldn’t care what she did with her money, but everything out of her mouth is a one-up of something someone else says, and I just don’t care to be something she steps on to raise her self-esteem.

I don’t mind giving up on the possibility of new friendships close to my home for the sake of my family, but I need to have contact with the outside world somehow. As I said, I’ve been extremely lonely. I do have a couple of friends in the town where I grew up, which is only about 30 miles from here, but most of my friends from there are off doing their own thing and we’ve drifted apart (and this is where we get into the private part of the story).

So I know to someone like my husband that spends his limited amount of time on the internet looking up woodworking, the idea of a friendship with someone you’ve never met or very rarely see is foreign. It may even sound pathetic. To some people, the idea of 150+ people that are essentially pen pals and the anecdotes about the things happening in their lives is probably pretty silly.

Until you’ve jumped headfirst into the online world, you won’t understand.

My friends are there to offer me hugs when I have a bad day. They support me when I lose a loved one. They offer advice when I’m mad. They cheer when I’m glad. They might not be here in the literal sense, but they’re here for me. There’s a great chance that some of us may never meet, or if we do it’ll only happen once but that doesn’t mean I haven’t felt their love. There’s also those that are almost local but not close enough to just hang out with, but when I announce tragedy, my texts are chirping on my cell phone, because they care. I’m truly loved, and I’ve had the blessed opportunity to love back.

I wait up and pace the floor in anticipation of babies I’ll never meet in real life. I scour photos of weddings that I couldn’t go to. I welcome home military husbands when their home is across the country. I offer support during tragedies. I giggle at passive-aggressive acts toward mean mothers-in-law that I don’t know. I cry when there’s loss. I laugh when there’s joy. It may only be bits of ram to someone else, I realize. My computer has an off button, but at the end of the day when I use that button, you’re all still in my head and in my heart.

Thank you for being here and for caring. I love you all, and no matter how lonely I get, I don’t discount you.

 

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Categories: Uncategorized

ENT pre-op

August 19, 2011 Leave a comment

We saw the surgeon for Perrin’s adenoid removal. He wasn’t at all familiar with Perrin’s PVL, which I don’t like, but there aren’t a lot of options. He’s an ENT. He doesn’t exactly study brain trauma. Neither do his colleagues.

He did ask a lot of questions about what Perrin’s capable of and not capable of, so I hope that helps. He agrees that based on the fact that Perrin does snore, gasp for breath in his sleep, have a chest rattle, and sleeps with his head tilted back, the benefits for the surgery outweigh the risk or the benefit of waiting until he’s older.

I let Louie ask as many questions as he needed to, and he seems a lot more comfortable with the idea now that a real doctor spoke with him. We’ve both had very negative experiences with nurse practitioners in the past so I guess I don’t blame him. The difference was that I went in to the initial appointment last month wanting a surgery of some sort to fix what appears to be sleep apnea and poor positioning (which will cause further physical delays) and he went in thinking we’d get some magic pill or something. He had this idea that Perrin would get a cpap and we’d be done. That’s backwards from the way it really works.

Now I just hope the adenoids are enough or we’ll be revisiting surgery in a year for his tonsils. He does have large tonsils so it’s a definite possibility but I’m hoping we can put it off. At least if we can delay it for a few months beyond that, it’ll help. In a year, he’ll be starting preschool. That’s a big enough thing to adapt to without healing from surgery for 3 weeks on top of it.

So as of right now, surgery is September 6th and the post-op appointment is the 20th. I’m nervous but happy to be moving forward. It’s nice to have something that can be easily fixed for once.

Categories: PVL

Time for bullet points

August 18, 2011 Leave a comment
  • My back feels better. It’s not 100% but it’s not as painful as it was.
  • I have been putting on weight lately. I could see it and feel it but I guess I was in denial until I got on the scale the other day at the doctor. It isn’t a crazy amount of weight but I’m not happy with it. I’m also going to take full responsibility. Today I ate a cookie for breakfast. Then I ate three burritos for lunch. I had a snickers bar and a bag of skittles a few minutes ago. My dinner will be salsa and chips. I don’t know how many chips it will be but my salsa recipe makes about a cup and I intend to eat it all. I need to do something about this, but not today. Dammit, I love food. I can’t help it.
  • I’m pretty sure the weight gain is also related to Perrin nursing less. I eat as much as I ever was but the calorie drain isn’t as great. If I had to guess, I’d say he uses about 2-4 ounces a day now. I still have milk, but he’ll take a few drinks, then ask for a cup of something. Our days are numbered and I really need to adjust my food intake accordingly.
  • My two middle kids got into some legal trouble Sunday night. Just before their birthday party, they broke out the security cameras in the park shelter. The cop decided to let it go since we agreed to pay for damages and just asked us to have them do some community service projects around town. One of those was cleaning the grass out of the cracks in the sidewalks. They did some of that yesterday. Today, they washed the tables in the shelter, swept the floor, and cleaned the bathroom. I have also been working them hard at home. We’re taking away an hour of work for every dollar it’s going to cost us for the damages. They’re also trying to do odd jobs for other people for money to help make up the difference. Tomorrow, they’re cleaning my mom’s gutters.
  • I am pretty sure that in addition to this stress, I have the beginnings of pms. I just can’t deal with any whining from them. This morning, I threw a fit over toothbrushes. Of course, it doesn’t help that they lied to me about them. I’m really sick of lying. I do feel dumb making an issue out of toothbrushes but it’s the principle.
  • Thanks to the big kids, Perrin’s singing Justin Beiber. I’m not pleased.
  • Tomorrow is Perrin’s pre-op appointment for his adenoid removal. Louie picked up overtime for tonight so he’s going to be a joy to be around tomorrow when he’s had 4 hours’ sleep. Oh well. I guess I can like him again the next day.
Categories: Uncategorized

testing

August 17, 2011 Leave a comment

I had someone create a syndicated feed on livejournal. I’m checking to see if it imports.

Categories: Uncategorized

August 16, 2011 4 comments

Long story short, I pulled a muscle in my back while having sex. I went to the walk-in clinic today to get it looked at and this is also the same health system where my husband works. I went into the exam room, etc, alone, so they may not realize it’s me, his wife. Then again, maybe they do. The doctor does know him. I know that for a fact. She can’t say anything, by law, but I bet she’d sure like to.

None of them would take hints for an answer. I guess they have to make sure there’s no domestic violence going on or anything. The doctor obviously has to know how the injury takes place but the receptionist, nurse, and x-ray tech really don’t. I still couldn’t be blunt enough to tell them to not worry about it, even though I know I do have that right. The conversation with each one, including the doctor, went like this.

Staff member: “So what’s going on?”
Me: “I hurt my back.”
Staff member: “Oh, did you fall.”
Me: “Nope. Didn’t fall.”
Staff member: “Well what happened?”
Me: “I hurt it  [then I whispered out of embarrassment] having sex with my husband.”

Not a one of them flinched. They must see it all the time. That, or they’re really good at not laughing in front of patients. The x-ray tech told me it doesn’t even phase her. I’m sure I was the only one phased by the story.

The doctor did ask what I do. I suppose she wanted to know if I needed a note for work. I told her I was a homemaker, and she asked how many kids. I told her five and she playfully jabbed me in the arm and said “You guys really need to quit having sex. It’s dangerous for you!” (I thought that was hilarious. I happen to love it when doctors act like real people.)

It’s hilarious how people elsewhere keep asking what happened and I know they’re completely unsuspecting. I am the one that brought up the back pain in the first place so it’s on me that they keep asking, but then I get embarrassed when I have to answer, and I can’t bring myself to lie about it.

To answer your question in more detail, it went from this:

To this:

 

Categories: Uncategorized, Videos

A very private hell

August 14, 2011 2 comments

I am so, so proud of my little boy. He can crawl. He can cruise. He talks up a storm. He even stood alone for a bit yesterday. He is really doing so great, for him. He has severe delays physically, obviously, but he has been progressing so very well.

Still, I have my days when I guess I feel sorry for myself, or for him, or just for the whole family.

We didn’t bargain for this. That may sound bitchy, but unless you’ve been in my shoes (and I guarantee you haven’t), you can’t judge me. It’s not pity. It’s anger. I don’t know who to be angry at. There’s nothing I can point my finger to and say “This is why my kid is disabled.” Prematurity? Probably. How do you direct anger at that? I don’t want this. Not for me, not for my family, and especially not for that sweet, sweet angel that has done nothing but love people. He’s bright (yes, he’s bright mentally – not that it would make him less loved if he wasn’t), he’s loving, he’s cute, he’s polite, and he’s a perfectly adorable little boy but he has this… thing and it hangs over him. It’s going to follow him for the rest of his life. I worry. Will he die alone? Who will help him when I’m gone? Will he find someone to love him and have a family with him, or will he die a bachelor in a lonely little apartment somewhere, never knowing what it’s like to have love reciprocated? People are fucking shallow. Don’t tell me they’re not. This is a legitimate worry. I’m not afraid of my eventual death. What I am afraid of is him being left behind.

I don’t want this horrible thing for my baby. It can fuck directly off… except it won’t. It just won’t go away.

Yes, it could be worse. I know that. I don’t need to be told. That doesn’t help. What seems like it would be a comfort only makes me feel guilty for feeling grief. I know it could be worse, but it could sure as fuck be better too.

Louie was telling me about a little baby he saw running around the hospital last night. He feels it too, especially when he sees these little babies that are doing things our son can’t. Yes, we get jealous. We’d never, ever wish this on another child, but this is a very private hell. Even within the same disorder, the stories vary so greatly. Nobody could ever understand. I have friends, thanks to the wonderful web, that have kids with the same condition and I often can’t identify with them. I have a wonderful support system. I can’t say I don’t. They’re there to cheer and to cry right along with us, but there’s no comparing. I don’t care what anyone says. We all do it. It’s natural. We may not say it out loud but when we see a kid walking at a certain age, we think “Wow, my kid will do that soon.” or “My kid did that a month earlier.”

Perrin is racing, racing, racing just as fast as his little determined but damaged brain can take him, and kids half his age, and now a quarter of his age are passing him up. I love that they are, for their own sake, but I will admit as I’ve admitted before that I’m jealous.

99 percent of the time, I focus on what my son can do instead of what he can’t. I am so, so thankful for everything he has accomplished. Then there’s the other 1 percent of the time, when I have these feelings and fears, and nobody can understand it. Sometimes not even my husband, because we approach it from different viewpoints, yet we’re all each other has because there is only one unique Perrin. 99 percent of the time, that unique Perrin makes me beam with pride. Right now, I’m in the other 1 percent and I feel very alone there.

Categories: PVL

Successful, Yet Insane

August 13, 2011 3 comments

I decided some time ago that it would be a good idea to have a birthday party for all five kids the day after hosting a big family reunion. This family reunion involved out of town company so that meant the house had to be clean enough to have them here.

First, we’ll start with the cleaning. I had a pretty busy week. Ronald came home, it was pay week, Perrin had therapy with all three therapists (two of them work as a team), and I got hooked on Teen Mom and couldn’t pull away from the trainwreck. Since Friday was full of errands, I had to do most of my cleaning Wednesday and Thursday. Then I had to redo it Friday because… well… I have kids. I managed to pull it off, including washing all of the guests’ bedding, and still get 5 hours of sleep last night.

There’s also the shopping that had to be done for a party and a reunion on pay day when we had a ton of other errands to run, such as paying the insurance and car payment. My husband has this thing about handing money directly to bill collectors, or getting as close as possible. No auto pay for him.

I decided to do a Wizard of Oz theme for the birthday party but I can’t afford to hire a cake maker this time around like I’ve done in the past so I had to do it myself. I am spoiled by 3D cakes and a plain sheet cake with plastic things on it wouldn’t be enough. I spent a very long time in the aisles of Wal-Mart, trying to find Wizard of Oz figures of some sort because I didn’t think to order them, and I also thought I’d find a specific frosting tip to make grass that my wal-mart doesn’t seem to carry. I had to go back on what I had originally planned because of this, and I’m intimidated by fondant.

I also have to add that this cake is a rainbow cake. You can google to see what I mean. The whole cake has rainbow colors in it. So I made one and it was too thin. I ended up cutting it up for a trifle for the family reunion. Then I made another rainbow cake and it worked better. However, since it’s a single layer 10 inch cake under a double layer 6 inch cake, it looks more like a hat than a hilly meadow.

I (obviously) frosted the cake green, then made fondant for the first time ever for the yellow brick road. It went fairly well, but I tried to make poppies too and those looked more like outer labia. I don’t think I want a field of vag on my kids’ birthday cake.

There’s also the other cooking I had to do/will have to do, the packing of the car, the lists about lists, and so on.

Plus, today being the day of the family reunion, we had a hail storm. Lovely.

The reunion was pretty much a success otherwise. My throat is irritated from being around cigarette smoke because people are inconsiderate. Not only do I not want them smoking right next to my kids, but my mom is a former smoker with copd and she doesn’t need to breathe that in either. My mom’s boyfriend was bitchy and bit my head off, and I almost told him where to go in front of half of my maternal family. Otherwise it was nice. People ate lots of food, took lots of photos, and had lots of fun. Everyone thanked me and there’s already talk of doing another one next year.

When I got home, Louie had to call the landlord because the toilet was leaking. He even soaked water up with a towel. When the landlord got here, he couldn’t find a leak.

Tonight I had to finish the cake, do dishes, and chase kids. My uncle was nice enough to get pizzas for everyone for dinner so at least I didn’t have to cook! What a lifesaver!

Tomorrow, I have to cook sloppy joes, scalloped corn, and salsa. I have to prep carrots and dip and salsa and chips. I have to get my cake to the park without screwing it up, set up the shelter, chase away kids that aren’t invited because the reservation system there is pretty loose, and then hostess a birthday party for all five kids. Then I have to clean it up.

The plus side to all of this is that it’s all over in one weekend. The family reunion wasn’t that hard by itself. There’s not much decorating or anything. Whip up food, lay out tablecloths, chase off family of people that are clearly not related that think they’re going to sit in the shelter all day because it’s raining, take a few photos, give a few hugs, and clean up before going home… easy peasy. It was the idea of everything being the same weekend that seemed like a great idea and now seems crazy, but it’s over. over. over. I cut out not only the time it takes to have five birthday parties but the expense and the work. Knowing that I don’t have a single birthday party to throw this fall is glorious. My kids all have birthdays between September 1st and November 11th. It almost feels like we’re having a birthday party every weekend, and in September we pretty much are.

I know this was all over the place and maybe a little confusing, but this is why I haven’t had much to say the past few days. I’ve been ridiculously busy. I’ll be witty again soon enough, if I can stop watching Teen Mom.