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I have yet been able to finish all the work I need to get done! As of now, because of so many interferences, frustration has taken over; thus, focusing to read and respond has become an issue. So, I will BLOG out my frustration.

First, Garry has had to do things in the house he should not. We had to buy a new stove. He didn't transport into the house, but he had to assist with some of the functions when switching the stove from natural gas to propane: orifice needed to be switched out for each cooking top, for the oven, and for the broiler. I, of course, had much cleaning to get done so the stove could be put in—clean up the kitchen so no dirty dishes were in the way, move items that usually set next to the stove, and once the old stove was moved out, clean up all the garbage that rolled under or fell along side the stove, plus scrub down the side of the cabinet where grease collected (as well as the walls), and move the pots from the cabinet next to the stove to reach the plug for the range. I called my mother to get some help, since cleaning is a disease for my children: "Hey mom, want to spend some quality time together doing what you love to do?" "What's that?" "Cleaning." She came down, and we started cleaning.

I was reluctant in calling my mother because of complaining, a gossiping complaining that I prefer not to do. I did well, keeping the discussion limited to getting the work done without mentioning how little help I get from the kids. If I would have said this, I would have heard about all the things that my oldest daughter has done, what my sister and her children have done, and so forth and so forth. Most of it comes down to money. All in all, we had a decent conversation—with little pointing of the finger.

Before my mother showed up, Garry and I picked up items in the living room after many items were moved to bring in the new stove (before I was able to get to the kitchen—so mom and I worked around the new stove to clean). We actually didn't have a choice: snow and rain isn't the best washing for a new stove. The underside of the coach looked like a dropping ground for cheerios, pennies, socks, and wrappers. I completely moved the coach to sweep under it. Garry just moved small items, and picked up larger paper products tucked in various places. Upon moving the coach, I found a lost shoe, and a lost channel changer, plus more wrappers wedged at the end of the coach that sits along side the wall, where the tray tables are kept (between coach and wall). Had to move all that out. Then, I found sticky substance—someone had spilled a pop and never cleaned my night stand. I moved everything, and swept where the sweeper usually doesn't get. Unhappily, I was now a full day behind on all my schoolwork. I had just finished putting all back when my mother showed up.

With the kitchen clean, and preparing to get a little school work done, the boys came walking through the door to install the stove. This took up most of my energy as well, seeing that I was helping various people find tools, making phone calls to find the proper tools (calling dad), and helping my granddaughter, Brianna, find information for her school project. (Oh, did I neglect to mention that my Brianna had to use the internet to find pictures on Anne Frank, thus leaving the house to go get her—but not far, she was down at my parents. And I probably should explain that my parents only live a block away.)

Now, while the stove is being converted by Vincent and Derek (Ginet's boyfriend), they are setting up Guitar Hero as well. There goes my space to study, to write, to read, to . . . do all those things I need to do with space. After the stove was in place, it had to be "burned off" before any cooking could be done, so this awful smell permeated the house. I finally gave up trying to do any studying, settled down to watch the little ones, and played a little Guitar Hero.

But this isn't the end of it! Let me back up some. I promised to babysit Chloe—Vincent's little girl, so he and Samantha could go out for awhile. This was the day before. While watching her, I was able to manage my students' journal folders and put the grades into my books. Still didn't get much accomplished, and everyone knew that Saturday would by my day for study. Well, as you can see, it didn't happen. Vincent and Samantha took me out for breakfast (after stopping at a car lot to attempt a loan for a newer car. Thank GOD Vincent came to his senses!). And here, my started on Saturday without touching one piece of work, Garry left at home trying to do cleaning that I had planned on fitting in between my studies (some dishes, and our laundry).

Now it's Sunday. I've managed to respond to Welch, and to one peer's rough draft. That doesn't scratch the service. I'm so frustrated that I can't observe a damn thing I'm reading. I have nearly forty students final drafts to their first project to grade on top of what I haven't been able to get done, and still need to prepare Monday's class! I've jumped ahead of myself here a little. Before I could "study" there were a few issues to handle: getting the kids up to take care of their dogs, get David moving to work on the drain that is leaking, and making Anna (David's fiancé) get up to watch Will—she had stayed up late to play Guitar Hero. I went to bed two hours before her, and was up at 8:30a. At 11:00a she still wasn't moving: not a pretty scene when I riled her into getting out of her bed. I was so mad at her for deciding that David could get up to take care of Will and fix the drain (after he had only slept three hours—he works third shift) that I spoke my mind: "Regardless how late you stayed up to party, you're responsible for Will; he is yours to care for!" A few words came from her, I made my point again, and then Garry took over from there. She has been in a closed off, upset mood all day. Once I settled down, once I did a little tearing, received some hugs from others, I was studying. Everything went well with my studies for about three hours, until my son called: "Mom, I need to tell you something. . . ." My stomach sunk, and I thought, "No, he isn't going to tell me about my car." Well, he did. He hit someone. My car, not drivable. The person he hit could drive away with a bent fender. Yes, my car now sits waiting to be fixed on some lot here in Fort Wayne. My car that "I" bought on my own, the car that "I" chose without a man telling me what to do, the car that "I" dickered for to keep my payments within my income—unlike the dealership wanted me to do, my car—the car that I can say is MINE because I did it by myself and pay for it from my own paycheck! Now, I have four grown children, and two of their friends in my living room playing Guitar Hero while I'm shoved into my bedroom—though, I don't mind my bedroom, just don't care for the shows Garry watches.

Yeap. Having to deal with Garry in his cave. The bedroom is called his cave. Rarely does he come out, and when he does, few people are home. I sit in my bedroom with my travel internet to post this to Blogger. The noise is ripping me up. I haven't had a quite day since Thursday night. I'm tired. Garry isn't being pleasant about my presence in his space. I do understand; but I think he forgets, I haven't had a space since. . . . Oh, hell, I can't remember. It's been toooooooooooo looooooooooong.

Hmmm, I really need that support group! I'm going to be pushed too far, and then, there'll be more than mom crying uncontrollably for two days, I'll snap into a rage!

Do It Right

Do it right? What does that term mean? If a stranger walks into my house they wouldn't believe I'm doing it right. My house looks like the cave of hell. School, work, homeschooling, and caring (originally the word posted before caring was carrying: wonder why I did that?) for my husband are two full time jobs. Have I taken on too much? Yes. I just want to finish my degree this semester, then work full time to meet the bills. In all of this, I miss my free time to write. The required blog for the weekly class I'm in does help enforce the free write. Still, 600 words plus here a week, and another 600 words plus a week for another class (with the same professor --whom I enjoy learning from much) tasks the abilities to come up with something new. I do not want to repeat myself in either; and, my life is so packed with just life, I can't respond to any news, let alone any new breakthroughs. When I have to deal with SS again, I'm sure I'll be writing plenty.

It wasn't long ago I had to fill out a form for my daughter's portion of the SS. All they questions they asked are already on file with answers. Why take my time when they can pull it all up on a computer? Well, I filled it all out, and found the sealed envelop still sitting on my desk! I know I should have placed it in the mailbox, but when I called home to have my son immediately get it off the desk and put it in the mailbox, I never thought about checking to see if he did. Three weeks since I filled out the information. It is a good thing that the information doesn't have to reach them until the end of March.

One thing that gets tiring is filling out paper work for Garry and Ginet. I know I haven't mentioned much about her disability. She does have a physical disability, but it isn't recognizable—a narrow pulmonary artery that interferes with her valve, causing blood to flow back into the heart instead of flowing out as it should (whatever section of the heart that is called). She also has a hole in heart, the hole that all babies have at birth that normally closes up. The recognizable disability can only be witnessed when she speaks—Mildly Mentally Handicapped (MiMH) is how she is labeled. Mild retardation. She 's on the lower rung of the mild category. She isn't my only child with the mental disability; my oldest son has the same condition, but is a little higher functioning. I've been told that two children in the same family with retardation is unusual; in fact, I remember someone saying, during all the testing, using the word anomaly. It can't be much of an anomaly when I personally know a family in New Haven that has two children with retardation.

Sadly, my grandmother blamed herself. My aunt, who I never had a chance to meet, because she died at the age of twelve, was mildly retarded. My uncle, who lived to a good old age, was retarded, but not from birth—he had two childhood diseases (one on top of the other). Most people would say, "Fried the brain." Gran'ma always took some things too personally. The doctors cannot tell Garry and I why we have two children with retardation, but we know a syndrome called Noonan's genetically runs in one of our families. Noonan's syndrome's characteristics are short stature, heart trouble, and in about thirty percent of the children, retardation. An early noticeable condition is having trouble swallowing, or continuously regurgitating immediately after swallowing. There are a few others, but I can't recall what they are right now. Garry's family has people from under 5 feet to over 6 feet in height. Ginny is the shortest person on my side of the family. The term short stature means people under five feet tall. Garry's youngest sister is under five feet, his grandmother was under five feet, and if I remember correctly, her mother was under five feet. When Noonan's runs in the family, half of the children born to the family will have Noonan's. I believe the other children are carriers. Most children live very normal lives. If the geneticist is correct, than there should be at least three to four other of Garry's siblings under five feet. Hmm, oddly, there isn't. The trouble is, I don't know how many miscarriages my mother-in-law had. I know she had a few. And I should have at least one other child under five feet, but I don't. I did have three miscarriages and a stillborn. Maybe Ginet doesn't have Noonan's. Hard to say; Garry and I can only go based on the scientific facts we have been given.

What does everything I have just said have to do with "Do It Right?" It looks like there isn't a way to Do It Right—life doesn't allow for it.

Thank you classmates

I want to say thank you to those who posted a response to week three. I am happy to see that you felt sorrow, but did not take pity; pity doesn't help me, it only holds me back. Any ideas you can swing my way would be of great help, and greatly appreciated! We've already fought Medicaid, and won (to receive it); fought SS, and won; now the fight is on to change Medicaids mind about experimental test and medicines. Of course, that isn't the only challenge we have: the house needs to be enlarged. In two years, we've managed getting the new sewer lines in for the extension. I'm hoping this spring will bring about the foundation and walls (at least the foundation). Biggest challenge is MONEY to do what is needed, and then to fit everyone's schedules together to do the job. We're do it yourself people, which Garry misses tremendously. The best he can do is supervise from his window on bad days, and on good days, take his cane and find a spot where a chair can be placed with enough area to do a little walking when sitting becomes to much. Hmm, wonder how it's going to work since he has to nap about six times a day.

Enough of this. Thinking out loud too much.

Poetry Abounds Again

What I’m going to write about this week has nothing to do with, or at least directly deals with my husband’s disability. My story begins with a note I wrote to my daughter’s boyfriend after being informed that they were asked to babysit on Valentine’s Day.

Derek,

I ask that you decline to babysit, seeing that it is Ginet’s first Valentine’s Day with a beau. It was unfair of Jessica to ask you to babysit on Valentine’s. There are others that can do so. (And a few more words were added, but this is the important part of the note.)

Somewhere between the night I left the note in Derek’s shoe as he played in the mud in our front yard, the day of the family pictures, and just before the night my granddaughters returned from their father,s, Jessica calls, hollering about the note I left Derek.

Screaming: “He offered . . . what right—“

Self: “I was told—“

Screaming: “No mom, you’re going to listen to me, you’re not going to say a word; I didn’t ask, he offered; and we don’t ask everyone to watch our kids; where do you—“

Self: “I didn’t say anything about you asking every—“

Screaming: “Listen to me; we’re not asking anyone to do anything; we don’t come over anymore because you don’t have the time; you act like we are in your way . . . .”

I allow her to continue for awhile, but once she says I act like they don’t exist and don’t involve her in anything, I become the scream.

SCREAM: “I DON’T HAVE TIME FOR THIS GARBAGE. NONE OF IT WAS IN THE LETTER. I HAVE PAPERS TO GRADE AND STUDYING TO DO. I’M HANGING UP NOW, JESS; I CAN’T ARGUE WITH YOU; I CAN’T LISTEN TO YOUR SCReAMING; I DON’T HAVE TIME TO DEAL WITH YOUr MISINTERPRETATION! BYE!”

I hang up.

About an hour later, I receive three consecutive texts, stating how I don’t treat her like my daughter, that I ignore her and, in her words, that she may as well be dead.

My response was no response to her, just a quizzical look on my face, telling my husband about the texts, and reading it out loud to Ginet. Poor Ginet, she felt like a dog caught in a fence.

I smile to myself and begin to poetically respond. This is what came of the whole event.

“I am selfish.”

I call when you can come over

My door is always locked

My refrigerator is key-coded

My pets smell like a rose garden

My house is immaculate—never a spot

My yard has DO NOT WALK ON THE GRASS

My concerns are only about my future; this is why I’m always broke

I’m only forced into sharing

I’m only forced into compliance

Yes, I am always busy

I sniff roses only when I grow them

The birds dive into my windows

Chlorine, Lysol, and Murphy’s Oil soap keep the rats away

Friends call me every night to dance: this is why I’m always home

My last semester of graduate school (9 credit hours)

Teach elementary composition times 2

My door revolves on loose hinges

Time sneaks in momentarily: Goo; Gaa; Patty-cake

Water-line breaks

Hot water heater out

Not enough room for a wheelchair

I only wish for “Sleepless in Seattle”

Mother Goose never had this many eggs

Does this sound about right? I give up hours to do many different things for many of the children; give up money—most of which I never see again (my house payment, my car payment, my electric bill payment, and more and more and more, right down to my gas for their vehicles or more for mine after use by them). Go on, say it! I let it happen; WE let it happen. We do, a great downfall we have—love for our children that is misdirected all to often with allowing them to step over us to where they don’t know the word NO, or how to SEE beyond their own four walls.

Hmm, I wonder how Jess heard about the letter?

No matter; I take the blame and go on. I can’t dwell on this situation. It is minute to what I must take care of—my husband and my well-being to keep doing exactly what we have always been doing—loving them all as we only know how to do.

Family pictures

What does family pictures have to do with my husband's disability: he is limited to motion and has a hard time getting around; a hour out on his feet can put him down for two days; and he can't sit in one place for very long either! Garry goes from laying, sitting, to standing, and cycling back through again. Sometimes, for about two hours he can go between sitting and standing, but that is on his good days.

Let me start with Today (Jan 31) I spent time running around helping others "buy" clothes for a picture setting. Jessica insists on blue, black, white, and / or gray to be worn. Many do not have these colors. Chloe's clothes all have some type of pink in them (too much, even if they are tiny flowers I am told), William's clothes consist of blue, but has yellow (too bright), Sammy doesn't have a dress-like top, and Anna had nothing that wasn't patterned with bright colors; Derek doesn't have a proper dress-like shirt, and Ginny just couldn't wear her very formal skirt and top that would win her a job--all this for a family sitting that Garry can't go to.

I can't help think about what he misses by not experiencing the family outside of his little domain--he rarely comes out of the bedroom, except to exchange his water bottle with a fresh frozen one. His life, now, consist of television watching--programs and movies (bought and rentals).

He is seriously addicted to the television. The DVD recorder / player went out on Thursday and he nearly had withdrawal. It took him four hours to disconnect the burnt out DVD and install Ginet's (of which she hadn't been using). I can't image what he would have done if her DVD had been hooked up! He couldn't wait for one day for me to get a new player, and he couldn't wait until one of our children were home to help him. I kept him at bay during the day before classes, but after I left, well . . . you get the picture. That is the most movement I've seen him do for awhile--but he paid for it! He was down a half day on Friday.

I know he NEEDS activity because in the long run it would help his muscles. If he could do everything at little tidbits until his body started "taking" to it. I have spoken to different people that have similar problems to Garry, and they all said that he needs "tiny" exercises and some "massage" therapy. He won't do it. While neither of them will cure him, it would help his mobility and keep him from being so sore and worn later when he has to "get out."

I'm wondering how I can get him more involved with family functions that happen in the house as well. He'll hide out during those times as well. He keeps saying he needs new clothes, but I can't buy them for him because his waist line has grown. He was just complaining about needing a new suit "encase" he does have to go out. I doubt he would even go to a sibling's death--he barely went to his nieces wedding two years ago. His mother may get him out of the house, but at this rate, I doubt it. I'm already telling my last daughter that he may be pushed down the isle in a wheelchair. She isn't happy about it; Garry makes jokes; I want him to walk.

Today has turned into tomorrow (Feb 01). The wind is blowing just enough to create a small roar through Garry's window fan. One of the side effects of the medication he takes is weight gain and being hot all the time. He was always on the little warm side before the disability, before the meds; now it cost me in having a bedroom that never gets warm, and a heating / cooling bill. A cool shower makes him sweat. Any movement, such as him getting the DVD hooked up, causes him to sweat. He is on blood pressure medicine. An active man severely slowed, and just over 50. How well will he move by the time he is 55? With research, we've been told, on stem-cell, scientist may find an answer to all of his multiple problems.

Controversy for me. There are different ways to receive stem-cells. One of those ways is not an option for us: abortion. Unborn babies murdered for the advancement of health? What could these babies give us in years to come? A cure for the common cold? Still, the other stem-cells that are used can only take scientist so far. There is also another issue with fetus stem-cell, something that deals with reliability in its use. I don't remember exactly. What you can get from one doesn't mean you can get it from the others. Anyhow, Garry, nor I, am willing to kill to help him "get better." It has no logic.

The doctor offered to raise his dosage on vicadon. Garry refused because he doesn't want to become seriously addicted. I don't think he has a choice. Pain management is all that is left to him. It has been a week since he saw the doctor, now he is wondering if he should have said yes.

Thinking even deeper into all of this: what will happen when his exterior body stops functioning? Can these multiple problems effect his organs? Will I be able to care for him when the time comes? Baby poop and pee is one thing: adult feces is another.

Oh hell! What will I do when he can't even hug me? I'm a person that has to have the physical contact. I'm already feeling neglected; I know he can't help it. I sometimes wonder if I'll have the strength . . . to . . . get through the long dry spell that will come. And then, I wonder, what if I die first? Who will care for him?

Keeping myself overly busy isn't going to keep my mind from all these "ifs," and definitely won't keep me at bay for affection.

Ah; BAY--I thought of a werewolf who cannot help itself, cannot control the urge. There are those days I can no longer keep from clinging to him. I can only shake my head as I think this and as I write this. What am I going to do?