Twinkle Little Star

A Week So Stressful I Can Only Write in Overused Metaphors.

On Saturday mornings I swim. Water is the great equalizer. When I swim, vision and hearing don't matter. I have to remove my hearing aids, and I am deaf with only a muffled ambient noise to even barely remind me that I'm still amongst other people. I get about 1/6th of the pool to myself. I have my own lane. The ropes that separate me from my neighbors' space are usually not visible to me, but they don't need to be. If I stray too far out of my alloted space, which I don't often do, I will be gently and tactually reminded that I need to move back to my center line. Vision and hearing are not required to swim, I suppose unless you want to be Olympic level competitive.

I'm not a great swimmer. I don't breath right; keeping my head above water most of the time. I'm not all that fast and I can't do the fancy turn around at the end of the pool and seamlessly continue my stroke. I stop and turn around abruptly. Or sometimes even stop and rest for a few breaths, then turn around and continue on. There is often a woman who swims next to me each Saturday. We smile at each other and then go about our own business. She is better, faster and stronger than me in the pool. She can swim longer. She is what I guess you would call morbidly obese. She works her ass off swimming whereas I'm satisfied to just keep my body moving in some fashion for as much time as possible in 30 continuous minutes. Usually there is at least one or two hotshots in one of the other lanes. A young man, good looking, great body. A serious competitor with his goggles and his swim cap and his speed and power and fancy turn-arounds at the end of the lane.

What interests me is that we all have the same right to swim in the pool. We all have equal access to our lane no matter what our ability level or economic level or whatever else. We are all stripped down in swimsuits. Sure, I guess there are high-end brand swimsuits as opposed to my generic blue tank, but who cares when you are under water? It is not like upstairs in the gym, where people's level of status can be seen by their shoes and they gym bag and their iPod and the car they walk out to in the parking lot.

So the studly swimmer and the obese lady and the deafblind girl all get their own equal lane, marked by a row of floating beads that barely touches the surface of the water. The beads are just sort of an illusion that tells us we have our own independent space. Just under the surface, we are all in the same water. I feel the ripple effect of the woman swimming next to me as her arms haul her over-sized body through the water. I have to temporarily work a bit harder to get through her wake. Sometimes I can ride along the wave of one of the other swimmers as they push off the edge at the same time as I do. We each help each other with the momentum of our shove-offs. But we act like we are totally independent of each other.

Swimming carries with it a certain responsibility. There are signs all over that warn you that you are swimming at your own risk. If you jump in a pool and plan to swim across to the other side, it is understood that you actually have the ability to do that. Although I am not a great swimmer, I can swim good enough to not put myself in too much risk. I know that if I suddenly tire in the middle of the deep end, I can flip over and lie back and be held by the water. The same thing that endangers me also keeps me safe. But usually, there is no such drama and I swim an uneventful swim while sorting through stuff in my head. Which problems are real? Which fears are potential fears? And which are only imagined?

Today I was thinking about a moment yesterday afternoon. Trying to sort it out into "real problem", "potential problem," or "imagined problem." I was physically and emotionally exhausted, having had to work on a lot of things this week involving D and his situation, a fiasco involving my kid's health care, and having to find a home and say goodbye to D's beloved "black cat," while dealing with the minefield that is living with my dad right now. At this particular moment yesterday, I was sitting with my naked and crying son on my lap while trying to call his doctor. He woke up yesterday with infection-smelling pee, and spend the day irritatedly grabbing his penis in pain. Urinary Tract Infection, I thought. I spent the day constantly shoving cranberry juice down his throat and giving him hot baths. I had taken him out of the tub and put him, naked, in his crib for a nap to try and let his diaper area air out, but it wasn't working. By 4:00, he had not slept, he was crying and still in a lot of pain. I tried to assess what to do, try to wait it out and see if it improves? Take him in right away and risk a potential problem with his medical insurance? (more on that some other time, I promise.) So I decided to get some advice from his doctor to help me make the decision. During this, my father comes up and notices an empty Pepsi can on my desk. He does not notice that I'm on the phone or that I have a naked, sick kid on my lap. He notices the Pepsi can. He has told me not to drink his Pepsi and to get my own, which I did. This Pepsi was from several days ago. Suddenly there is a crisis about me drinking his Pepsi. It is just one of several.

There is the Tupperware I did not put away. There the fact that I bought too many gallons of milk(2) and it is taking too much room in the refrigerator. There is the issue with having to buy his and her food because I'm not allowed to eat his, but my food taking up too much space in the refrigerator (remember, I feed four people to his one, but apparently he still gets dibs on all the fridge space). There is the time I absent-mindedly got a cup down from the cupboard and made some tea, not realizing that I had used a cup designated only for him. I had to hurry up and wash it and put it back before he saw me. Then I ate a few of his nuts from a large canister. I'm not a huge nut eater so I don't think he would have noticed the difference in the amount, but he caught me so I was busted. There was the fact that I had to get myself and my kids out of the house Saturday morning so he could clean. There is the portraits that he wants me to get of the kids and him, but he doesn't want me in the picture. There is the cat. The cat that lives at D's house that he never saw that he bugged me forever to get rid of because, as he tells me every chance, D isn't going to live much longer and I don't want all three of those cats in my house after he dies. (This is not the reason I found the cat a new home, there were other reasons. But it was sad for D and I and I really didn't need this kind of commentary the whole week while I tried to deal with it.) There was the mulch, the Mulch, THE MULCH that I had to hear about all week and nothing could interfere with the project of re-mulching. There was the baby bottles that were taking up space in the cabinet that he wanted me to get rid of. There's just a hundred rules that I have to keep straight in my head. It is hard to be a single mom alone in the house with the responsibilities of your kids sometimes. But it is not near as hard as being alone with my responsibilities with my father in the room adding unneccessary conflict. I'm just exhausted.

While swimming, the categorization of my problems seems clear at first.  The "real problem" was that my kid was hurting. The "potential problem;" the one that I have to consider but can't get overwhelmed by, was how the timing of getting potential care for Aaron might affect my insurance mess. It turned out, that with a phone call from the nurse reassuring me that I could wait a day or two and see if he improves, and the fact that he did seem to improve took care of those problems.

And what of the Pepsi can? That is an imaginary problem, right? Like all my father's nanocrises, imaginary problems can be discarded and ignored. I can respect the fact that this is a real problem to my father and not drink his damned Pepsi anymore, and either try to shove my diet coke into the refrigerator somewhere or go without. Easy enough. Or I could take a stand! Demand equal rights for his and her soda products! But that sounds exhausting and time consuming. And what do I care? I don't need soda that bad to think about it this much.

I swim my laps and think about the sign, "Swim at your own risk." But do we really? I mean, if suddenly, I or the lady next to me were to have some kind of trouble and start to drown, would we not help each other? And haven't we collectively used our resources to pay for a lifeguard to help us in times of trouble? Why do we know that we would try to save the stranger sharing our water from drowning? Besides that we are conditioned that it is the right thing to do, we do it because we value all life, even if we don't personally know its value. Someone loves that fat lady next to me, despite the many who must discard her value because of her weight. We know that, even if we don't know her. We know somewhere that, like her wake that I ride in the water, helping  her helps us. She is valuable to all of us, and I am valuable to her.

What a nice rule, I think as I swim. If only life could be more like swimming pool rules. You need to be able to hold your own if you get in this pool, but if unexpectedly you can't, we will help you. But then I remembered the one time I tried to save someone who was drowning and no one else thought she should be saved.

When D and I were at KU, an old high school friend of his called. She was working at a residential institution for developmentally disabled kids. It was a minimum wage, summer job for her. She told us that a girl had drowned in their pool and died. She said that, although she was not directly responsible for supervising the swimming girls, she was in the pool area and was talking to the co-workers that were responsible. They were in an office next to the pool. It had a window that you could look out of and see the pool, but she said no one was paying attention to the girls, all around 10-12 years old and mentally retarded, when they noticed that one girl was floating faced down in the pool. The girl died, and D's friend felt bad about it. She didn't know what to do, because the other workers she was with wanted her to say that another resident pushed this child down into the pool and before they could stop her, the girl drown. D encouraged her to tell the truth. I got on the phone with her and encouraged her to tell the truth. OK. I only talked to this girl once, but she was a messed up girl. It was early August, and she was worried that if she told the truth she would be fired from her summer job. I told her to quit. Then tell the truth. She said she couldn't quit, she needed the money. I told her to go work at McDonald's or something for the month. She said McDonald's was for losers. Then I laid on her that I was a mandatory reporter and I was going to have to tell the authorities what she had told us. She pretty much cussed me out after that. I didn't care.

To make a long story short, I got the university and some of my special ed professors involved, D and I were deposed and subpoenaed, and the accused mentally disabled girl was tried and convicted for second degree murder. D's friend never told the truth and D's and my statements were ruled inadmissible due to hearsay or something. This girl, already a ward of the state, was to pretty much be sentenced for the rest of her life  to institutional imprisonment when as far as anyone knows, she may have tried to help the drowning girl.

What amazed me most about this incident, was that everyone, EVERYONE except for D and I and my professors who tried to help the girl with legal representation but were denied, was in on this conspiracy to sacrifice this girl. The school, the workers, the DA, the defense, the state, the judge did not question putting the blame on an adolescent developmentally delayed child who should have been supervised. No one wanted to save her. Not at the possible cost of facing some (probably minor) consequences to the institution. No one was willing to throw that girl a rope or jump in on her behalf because they didn't see her life as having value anyway. As far as I know, she is still institutionalized with a second degree murder rap to follow her to each placement throughout her life.

I wondered if hot guy and obese lady and me were all in the pool drowning together, who would be saved first? This is exactly the question that is right up my sister and father's alley. They sit atop the tower of entitlement and white privilege and contemplate actuarial stats about those below. Lisa, would you rather be totally deaf or blind? Lisa, who is worse off? You or D? Lisa, who is worse off? D or Christopher Reeve? Lisa, I don't think Russian athletes should win gold medals because they don't earn as much as Americans as pros. Lisa, If mom can't function higher than a first grader because she just had brain surgery a week ago, she should just die now. Lisa, if you are so bad off you can't pull your weight, go to a nursing home. Lisa, D has no quality of life, why don't they just give up on him? Lets stack everyone up according to worth like some sort of Monopoly game. And worth is determined by our currency which always put us at the top. Nice clothes, cars, CPA jobs, big screen TV's, hardwood floors, iPods, diversified portfolios = value. My strengths, such as working things out so everyone is included, living simply, sharing, empathy, mothering =  weak or invisible and not of value.

My house, the house that I fancied in my mind that my mother's love built, the house with her name and a love note from me etched into the studs, my house where my children were born and call home, the house I so wanted to be a home that stayed in the family for at least my kid's childhood, if not for generations, is nothing more than a stock, a real estate investment for my father. He who said I can live here after he goes if I can pay my sister her share also gets excited at every prospect of how much he could make if he sells it. The floor beneath my feet is not sturdy beams and studs; it dissolves into unsure and slippery deep water. And I can't seem to swim because there isn't enough room in the refrigerator and I use the wrong cups and I don't do my laundry fast enough and my kids drop too much food on the floor. I am drowning.

Would my father and my sister save me if they were standing right above deck here while I swim my laps? Probably. But at a great price. They would do it for appearances and I would never be allowed to try swimming again and I would always be reminded of the time I stupidly thought I could swim but they had to save me. Does it matter why they did it as long as I was saved? I don't know. Would a man risk being rescued if he knew that his rescuer would require he indenture himself to slavery and abuse the rest of his life? Or would he die instead? Maybe that is too dramatic, but what is not is that at the cost of putting myself in a position to be helped by my family, I am participating in the myth that my life is of less value than theirs. Money is value and I have not enough to buy this particular house. That means that I am always to be subjugated to the rule of Pepsi cans and clean coffee cups.

Did I ever mention the kicker? Did you know my sister lives in my father's house (in Kansas) as well? She has a similar deal as I do. She pays some amount of rent that I believe is similar to my own. She moved in with them when she lost her job do to her company closing that particular branch. She could have transferred, but she chose to stay and move in. Shortly after, my mother became ill and my sister stopped her job searching efforts to care for her. During that time, she lived there for free. That is fine, of course. It is reasonable to cut her a break when she loses her job and she cares for a sick family member. It just wasn't reasonable when I lost my job and cared for a sick family member. That was of my own doing. (Sick family member being D.) My father and sister have lots of ways to rationalize away being responsible for sharing themselves with people. I suppose it would only be okay if D were going to die within the year, nobody in their right mind sacrifices to take care of someone long term. Besides, the difference is, my sister probably Could pay for that house if she had to, she is just taking advantage of cheap rent. When she does it, it is smart and frugal. When I do it, I am a leach.

Sometimes when I talk to my family it is like talking to someone with a disability who doesn't realize they have one and does nothing to  accommodate it. D's and my impairments are obvious. D is missing the use of his feet. He is unable to control his bladder. I am missing the use of much of my vision and hearing. I am unable to drive. With them, it sometimes seems like they are missing the use of their humanity. They are unable to control their privilege and need to control and judge others. In my father's case, he is unable to control his anger.

But you know what I think it really is? Since swimming laps has been so easy for them, and they've never been exhausted or overextended, they've never come close to drowning. They attribute this in an entirely Calvinistic and meritocratic sense to their own self worth. They are good swimmers because they work harder at it than anyone else, even though they hardly got their pinky toe wet in the pool in the process. They don't think it is possible for them to drown because they don't deserve to. And they don't think that people would really be there to help you if it was, for they know that they aren't willing to be there for others. Reassurances of help are met with suspicion and disbelief. They almost find it insulting, as to be in a position of help would imply that they could fail. So they don't see the need to step out of themselves and bother with helping someone who has been exhausted or overextended. Those people who can't swim as well as them just aren't valuable enough to save. They should get out of the damned pool. The impairment is that they don't know that one day they will get exhausted and overtired. One day they will need help. And what they don't want to believe is that one day, someone will help them. Making no judgments and wanting nothing in return and not taking anything away from their person-hood, someone will help them. It will probably be me.

So, what seemed to be my least important problem, imaginary stuff like drinking a Pepsi, is actually probably my most important problem. It isn't about Pepsi and coffee cups and Tupperware and refrigerator space, it is about trying to swim while being pushed into the water by someone who wants to make sure I know my place and I am devalued. This house is not my life raft, it is my raging river. If I am not careful, I will take my kids down thrashing with me.

At some point, I worry that my kids will likely depreciate in my dad's eye. They will not be so cute and physically and emotionally perfect. They will become awkward tween-agers and maybe gain some weight or have zits or prefer ballet to football or boys to girls or become a peacenik or date a girl in a wheelchair or a fat chic or be a goofy goth kid or get into trouble for skipping class to go to something like dungeons and dragons instead of some more manly thing worth skipping class for or become one of those virgin pledgers instead of going out and getting some action or god knows what. Or worse yet, only one of them will depreciate, like what happened in my family and then will face constant comparison to the other. Or maybe it will be as simple as one of them eating the last apple and getting yelled at by my father that will send them drowning.

So there is a plan to find calmer waters. It is going to have to have several steps and it is not something that I can do instantly. If I try to get out of these waters too fast, I'll end up thrashing around and drowning in my own panic. But I think it is possible before they get old enough to really feel the effects. It is not so much about pulling myself up by my bootstraps, although there will have to be some of that. It is about finding the kind of environment where my value is appreciated and I can excel at what I do best instead of being shoved into the face of what I can't do. It is having to fight this feeling of worthlessness that interferes in being able to succeed. It is making sure my kids and I are around people who know this is all about doing your best so that you can help each other out. People like Nik, who say, "If the shit hits the fan, Lisa, I will get you into Canada." Or even Shannon, who says, "You have friends that will never let you be homeless." These people, who carry around these life vests are the ones I want my children to know. These are the people who motivate you and make it safe enough for you to go out and do some bootstrap pulling, if only so you can have a spare life vest for them as well.

Before I do my lap swimming on Saturday morning, I get into the pool with the kids for their lesson. I want to teach them to swim on their own. To feel the freedom and weightlessness of the water. To know that you don't need vision or hearing or even legs or money or an iPod to stay afloat. Aaron already swims about as far away from my hands keeping him aloft as he can without letting go. Aaron, who I always thought was on his first life in reincarnation terms, has no idea the dangers of the water yet. It is all good fun and of course mom will protect him until he is ready to let go. Naim is more unsure and clings to me. He knows the danger of the water from some other memory that I am unaware. Naim has been here before. For Naim, the lesson is not so much to learn to swim yet, but to trust me enough that I am going to allow him to learn to swim without losing him in the waters below. For now, that means he knows I will hold on to him no matter where the water takes him. For both of them, the lesson of the water is to venture off and swim, trusting that someone will jump in and save them if they need help.

Lie back, my child. Let your head
be tipped back in the cup of my hand
gently, and I will hold you. Spread
your arms wide, lie out on the stream
and look high on the gulls. A dead
man's float is face down. Look up!
Your compass lies not in the dark sea,
but in the indigo sky.
Lift your breath wide and free in your chest.
For those who collapse small and hidden,
Will drift to the bottom of their own fear.

And you will dive
and swim soon enough where this tidewater
ebbs to the sea. My son, believe
me, when you tire of the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light-year
stars. Lie back, and the sea will hold you.

(The poem is something I adapted from a woman's blog on the internet. Her blog is no longer active. If you know the source of this, let me know and I'll give proper credit.)

You Mean People Actually Read This Shit?

As much as I've tried to make this a mom blog of a disabled person rather than a disability blog, I have probably failed miserably. In any case, I thought I'd mention that I'm getting some press. In the disability sector, of course. It's cool. You PABU's are always my homeys, as well as all the groovy mamas. Everyone is welcome here. Kumbaya.

The Patient-Consumer Parade has been after me for weeks to make a contribution. I planned to procrastinate really long and hard about that. They just went ahead and took a submission on their own. Fine by me, I like it when my to do list gets magically crossed off.

The Disability Studies folks from Temple University have mentioned me several times. I really like that blog. It has a great post now about inmates at Willard Psychiatric Prison Hospital whose dusty suitcases were found in the attic upon its closure in 1995. These 400 suitcases, many from people who thought they were to stay temporarily but were not ever released, are now a museum exhibition.

Also, this is kind of related, kind of not. The Library for the Blind sends me random books sometimes, and they recently sent me Moving Violations by John Hockenberry, the journalist. I've been reading this book (it is over ten years old), and it is excellent. He also has a good blog in which he actually does manage to have a journalist who has a disability blog rather than a disability blog.

Several years ago I sent my sister a copy of the Mary Johnson book, Make Them Go Away as a disability studies primer. Totally wrong book for her. It was too militant, too way out there for her to understand, and she told me she couldn't read much past the first chapter. I remember her mentioning Hockenberry. "Why can't disabled people be like Hockenberry? He's not militant. He can blend in to society." (or whatever she said, something to that effect.) Truth be told, Hockenberry says pretty much the exact same things Mary Johnson does, though he has the writing skills and the perspective to better bridge the gap between minority culture and the majority who doesn't want to hear it. Johnson was writing to the chorus; Hockenberry was writing to the masses, with a few little code words and phrases just to keep the gimps happy. His writing is also very entertaining in a general, story-telling way. This was the book I should have sent her.

Get a job.

So, you all voted for bailing. You may be right. My gut says something has to change and this arrangement where I'm constantly made to feel like an amoeba sucking off his highness's royal castle is not going to be good for anyone involved.

However, running down the street right away to attach myself financially to D by sharing an apartment isn't probably the answer either. At least right at this second. I'm going to be honest with you here. And this is hard for me to say. I don't know how long D is going to live. Or if he does live, how long he will be able to live independently in his own home. Now don't get me wrong, he is not dying or anything. And who knows? I could be completely wrong. I have not given up hope. But my expectations for D and I and our lives have changed drastically since I've known him.

When we first met, he was a lot like me. A high achieving, hard-working disabled guy trying to play by the nondisabled rules and trying to "PASS" in the world as much as possible. Then, I thought he would graduate from college, maybe even go on to graduate school, and become at least a middle income engineer. I figured we'd buy a totally accessible house. He'd go to work, I'd go to work. We'd have kids (I thought maybe through ICSI/IVF but also considered DI and/or adoption at the time.) We'd have made it. No SSDI, no Medicare. We've live perhaps a modest but comfortable life. We'd easily have group health through our employer. Perhaps as a perk, like when they have perks for high tech guys where they do their dry cleaning and cut their hair on the job, D could negotiate some attendant services. We'd have made it. What every disabled person wants. Not an extraordinary life. Just an ordinary one.

At some point after he moved from going to OSU to working on his health more (The first pressure sore issue) my expectations changed. I thought, well, we won't get married. He needs to stay on Medicare and TriCare at all costs. He may never work full-time, but maybe a part-time job with flexible hours. We could still buy a house, have kids. It would just be tighter.

How we got from there to living separately yet having kids together is part of the balance I've had to strike between my life as and individual and our lives together. When you are with someone with a disability, you are also, in some respects, a quadriplegic as well. D is also, in some respects, deafblind as well. I cannot drive him around when he is ill. He cannot come live with me in a cramped, two story house. When we go to the ocean, he cannot go down to the beach with me (unless all of his brothers are there to help.) Likewise, I cannot engage in a lively conversation with him and a group of his friends or family because I am deaf. We both make decisions and try to balance when we are going to hold each other back to stay with the other person and when we need to let the other one go off without us.

Me having children and living here is a time when we decided that I needed to go off a bit without him to fulfill my dreams. Although I take him along for the parenting ride as much as I possibly can, he knows that when I think of my responsibility to the family unit, the priority is the children and myself, because right now, I am primary to the children's well-being.

The problems with D's health right now are not acutely critical, but so severe and complex overall that I have to deal with the reality that he could go at anytime. And, really, in order to stay here with us, he needs to focus a tremendous amount of time and energy in just keeping himself alive.

Anything is possible. But right now the outlook is that there will be no job in D's life, no house, no financial independence, and no ordinary life. The extent of the damage to his skin and his body's inability to heal itself is so severe that it is hard to see if there will ever be a solution that will allow him to return to normal life. This past year, health-wise for him has been the worst, ever.  Sores on his feet last July were dealt with by amputation and skin graft, a sore on his ischial bone developed while his feet were healing, and while his butt was healing, another sore on his foot developed. I don't know when the cycle will stop, or if it ever will. Tomorrow he goes to see a doctor to decide about more skin graft surgery which will hospitalize him again for several weeks or months.

And as an aside...I hope we are all past placing blame here. All of these medical problems happened under supervision of doctors and nurses. He did delay getting care for his feet last July, but I'm not sure any of this could have been totally prevented. If anyone is to blame, it is the medical insurance companies who continually refuse to allow him the proper equipment that may help prevent some of these problems.

So, anyway, my relationship with D has changed, yet not so much. We still talk all the time and tell each other everything. He still comes over and is enthralled by his children. He and I still are committed to each other and plan to consider each other in each other's plans no matter what. I will not leave him based on disability. I know that is what everyone wants. Everyone considers it some kind of personal flaw that I love a quadriplegic. But I don't care. I know what it is like to date someone and have them say, "I love you, but I can't handle the long-term effects of your disability." I just see no reason to be that way.

But still, the balance must be achieved. What I don't want is to move in with D and have an apartment or house that I couldn't afford on my own if something happened to him. Of course, I could always move or get a roommate, but I do have to think of stability with the kids and a long range plan for myself, just myself. This was always how D and I looked at co-parenting. Financially, the kids and I are a unit, and D is not a major player. (Although he does often contribute money and stuff we need.) My family is not a major player either, albeit renting out dad's place. The idea was always that I had to be able to make it on my own. And basically, I have.

The path for most people to financial security has been to get a good, steady, good paying job with benefits. That would be great, but in my current situation, it is actually less stable than getting SSDI bennies and medicare. It is ALL ABOUT THE HEALTH CARE. I cannot stress to you enough how much this country's screwed up dismal disgrace of a health-care system has ruled both D and my life. Ultimately, problems with the health care system may contribute a great deal to whether D lives or dies. His father said once when he was in the nursing home, "I hope they aren't treating him like he's nothing but a medicare patient." I kept quiet because there was absolutely no point in saying out loud what I was thinking which was, "He is SICK because he is a medicare patient. He is IN A NURSING HOME because he is a medicare patient. There is no 'treating him like'. That is the essence of his existence, that of being a medicare patient. It affects everything."

Even my children, who I pay premiums for, are embroiled in an insurance debacle now in part due to the fact that my son had two febrile seizures that will mark him for the rest of his life as almost uninsurable. I'm not going to go into it now. It will make me too mad. I'm hoping to share it with you when it is resolved, so I can write about it without destroying my keyboard in anger.

Part of the conflict that I have in my family is that they want me to PASS. They want me to get the steady job and live like everyone else. My disability just being a footnote about how I take the bus to work instead of a car. I might have been able to do that 10 years ago. There is no way in hell I can 'pass' anymore. This is how it is supposed to work for disabled people to get a job:

• You get a kick-ass education in a slim field of pre-approved careers by state vocational rehabilitation counselors that they decide your disability matches. (The rules of getting through that kick-ass education are matter for a different post.)
• You do tons of volunteer work so you have the experience to pad your resume that no one will give you with real part-time intern like work.
• You make a resume that doesn't make mention of your disability. You don't mention it in any correspondence with a potential employer. If you did, you'd never get an interview.
• You get to the interview, and you do some super fast talking to convince them that disability doesn't matter. You state in very specific bullet points what simple, inexpensive accommodations you will need to do your job just as well as everyone else. You, of course, know what all of these are without even being on the job yet.
• Your employer is wowed by your persuasion. You have completely wiped away years of misconceptions and prejudices in just one half hour interview. Hell, they even think it is cool to have a disabled person aboard. Disability is all the rage. It's the new Gay.
• If you happen not to convince your employer right away, then you offer to work for a period of time, maybe two weeks, for free. If you suck, he's not committed. But of course in two weeks time you will have the job down so well that he will be thrilled.
• With just a note or a phone call or two before you start, all of your accommodations are set up perfectly to your specifications on the first day of work. You can transition right into full work load just like any other employee.
• Other workers are wary of you at first, but within a few weeks, your ability to do the job ten times better than the average employee and your ability to laugh at jokes about your guide dog showing you where your partners parts are during sex and to answer all the one hundred questions they have about your disability and all of their stories about their previous disability experiences while still doing your job put them at ease in no time.
• Your accommodations that you asked for before even starting the job work perfectly for you for the rest of your life. They never run down or break, the technology never changes, and your disability or your job duties never change, either. You are set for life.
• You have perfectly planned accommodations for every task that comes up, which are assigned to you without bias. On the extremely rare ocassions that you cannot perform one small portion of a task, your co-workers graciously trade duties with you and your boss, admired for her flexibility, congratulates you on your teamwork.
• Just don't ever expect a promotion or a raise past cost of living, because you are lucky they gave you this job in the first place and another job might mean they have to buy you more adaptive equipment.
• You retire with a nice nest egg, because of course your health insurance was so great at this job, you never had to pay exorbitant out of pocket expenses for the medical care you need to keep working. The end.

Okay, so it doesn't work this way. Disabilities change, job duties change, technology changes, bosses change and are less willing to work with you. Voc Rehab only gives you one shot, more or less. So after you lose that first job you worked so hard to get to become "normal," and most disabled people will, don't expect anymore help from them. You can either go through this cycle again and again and gain and lose medical benefits (and money for housing and food and stuff) or you can go on disability and possibly have at least stable, if not all that comprehensive health care. The difference between disabled people in this situation and nondisabled who may lose their job, is that nondisabled people are usually not in a position of needing ongoing health care to survive, or even put themselves back into a position to work again. In addition, nondisabled people's time in between jobs is by far shorter than the disabled (who on average go on 100 interviews for every 10 that their nondisabled counterparts do) and also, the option for purchasing an individual health plan is almost nonexistent for the disabled.

You can really tell the difference in how disabled people live if you compare us to Canadians. They have health care so that is a non-issue. They also get state funded adaptive technology and equipment updated every five years. They also get ongoing voc rehab support and the availability of job support (where a specialist helps you get set up the first few weeks of a new job) and apprenticeship programs for the disabled is much higher. My friend, Nik, who wasn't even a Canadian citizen until recently, has been able to maintain employment for years because of these programs. When he lost his job at a tech company, he was able to participate in three work training programs until he found the right job for his skills with no worries about paying out for adaptive tech he wouldn't use or losing health coverage.

I am not the most disabled person in the world, and as I've said before, there are LOTS of things I can do to contribute to society. My problem is that the nature of my disability, deafblindness, is extremely hard for people to understand and to accommodate. In addition, my disability is incredibly unstable. In around 2001, I lost a huge chunk of hearing in about one month's time. With no time to adjust, the impact it had on my jobs was incredible. I nearly all of my vision in 2004, it did not return for about 5 months. If I had been working at my last job at the time, I would have simply had to call up and quit that day or take an extended leave of absence. I can prepare and prepare for total deafblindness, and even pretend that I am and learn all the technology available for that, but we are talking thousands of dollars of equipment that is not available to me, besides the fact that it changes all the time.

So to me, the steady job route seems more irresponsible than what I am doing now. My sister and many others would think a person like me is either a lazy sloth because I can't pass or if I'm so bad off I should just sacrifice my whole life and sit and stare at a blank wall and try not to get into anyone's way or use any precious resources that society is spending on me. Or, if you are Peter Singer, you think I should just kill myself.

I've never gotten why the poor and disabled are expected to sacrifice so much for the good of society when the rich aren't. The rich are just entitled to take their profit even if it means screwing everyone else. The thing is, people like D and I and many others have a lot of things to offer and contribute. Society is content to just waste us because we don't fit exactly into the profit making set-up. And when we find ways to not let ourselves be wasted, by volunteer work or advocacy or raising children, being a loving family member, even employment (that takes away from someone else), then they demand that we PASS or shut up.

So, getting back to my original thought process here. My plan is to work the system to my advantage as much as I possibly can. Before my mom died and I got pregnant and lost my job and lost my hearing and vision and my guide dog died and D got sick and everything went all wacko and I just lived day to day to keep up, I was working on a home business idea that would enable me to possible make a bit of money (not a whole lot) by incorporating myself and still keep my medical benefits and that itty bitty SSDI check I get. This would enable me to work when I can (hopefully!!) and if the shit hits the fan disability wise, I can take a few months off and adjust without the world ending and then I could get back at it. I haven't been able to work on this since the kids, but I think it is imperative that I give it a go. What I'm doing now, which is piecing together working for D with small odd jobs has got me on a treadmill that is hard to get off of.

Living in this house was part of my plan for added stability. I really think my mom wanted that for me when she tried to buy a house out here that I could live in. After her death, it was made really clear to me that this was not to be a stable arrangement and I could lose this house at any time, especially if my father dies.

The harder thing about living here besides my dad's housework peeves, is that he treats me like I'm a charity case that he is obligated to help because my mother made him do it. There is no understanding of my job situation except that I should be able to "PASS" or as he told me once, "just go live in a nursing home if you are that bad off." Well, I can't pass and I really, REALLY don't want to end up in a nursing home. So there has to be a better way.

Is section 8 better than this? Is that other one (the IRS one?) better than this? What about some kind of Fannie Mae thing for disabled people I heard about? What about habitat for humanity? Or renting a house with another single mom? Or some other kind of co-living situation? I really like the location of where I live, but the cost of living is high here. What about living down in the Willamette Valley somewhere where housing is cheaper? Or, hell, calling up Oprah and seeing if she'll build D and I a house? (Would it be worth the telethon we'd have to put on for her show?) Maybe I can make enough working and put enough money into a house that would count for my business as well? Renting with D and just risking that I may be left in a lurch at some point?

So, lots of questions that I thought I had put to rest when I moved in here. But, my dad is not so much of an asshole that he is kicking me out or anything. I have time. I do have a good deal here, and at times, I think he is trying to work it out with me. So, again, this is me doing what I do best. Working on Plan B,C,D,E, infinity. If I have learned anything, I have learned that in this life there is no stability with money, health, housing, material stuff like that. No one has it, even if they think they do. Some of us just see the edge more clearly than others. If we are lucky, we find stability in relationships, love, friendships, compassion, those kinds of things that we can supply in abundance.

A Terribly Long Rant Concerning Housework That Will Probably Drive You to Shoot Your Computer Screen Out After The Third Paragraph

So, I have a topic I am going to just throw out there. This may sound crazy, but maybe you folks who live inside my computer have some insight.

Can you be addicted to cleaning? I'm not talking about the usual OCD type of thing where you wash your hands 100 times because you fear germs. I'm talking about making cleaning the center, top priority thing in your life. Is this an addiction in the same vain as an alcohol addiction?

I think we all suffer from addiction. Some people are more susceptible than others and some addictions are more dangerous than others. I am probably a bit too addicted to the Internet, and despite my very decent diet and regular gym visits, I am easily 30 lbs overweight entirely due to my addiction to chocolate. But when does a bad habit become an addiction and is there such thing as a good addiction? I'm thinking a habit becomes an addiction when it causes harm to you or others and despite this you don't stop. For example, I do believe I could cut down on my Internet usage by just putting my mind to it and setting a time limit, perhaps with a sticky note on the screen. I have total confidence that I could do that. And right now, I don't think my Internet usage is really a problem for anyone, except that I could be reading more good books or something instead. I mean, I'm not on the nets when I could be spending time with the kids or anything. Chocolate is more complicated. It would be really, really hard to give that up. And it probably does cause harm to my health. Cutting down some is a reasonable goal, though.

Okay, so back to cleaning. (And by the way, we are totally NOT talking about me here, as many people can attest to.) Cleaning is good, right? It is much better than a heroin addiction, of course. Is it a little personality quirk or is it a major problem? I'm actually starting to think that cleaning obsession runs in my family. Naim is a cleaner and an organizer. Right now it is really cute and all. And every night about 5 minutes before we get ready to go to bed, I sing our little "time to clean up" song and he gets all excited and runs around and puts away his toys. And I say, "thank you, Naim!" And that is that. But sometimes, I worry that he isn't playing and relaxing and having fun as much as he is waiting for me to tell him it is time to clean up, and trying to clean up every time Aaron takes a toy out. So I've drastically de-emphasized cleaning for him, and don't even mention it until the end of the day. I've also let toy clutter go a few days on purpose so he knows we all won't die because of it. This has improved things drastically over just a few weeks. He plays more now. He is more creative in his play. He is starting to pay attention to books and words more. He seems to have less anxiety. And when it is time to clean up, he still likes to do it, but it is more of the five minute thing we do that he gets a "good job" or a "thank you" for, not a big event.

Why I worry is because of my dad and my sister. They are both cleaning freaks. And I realize here that people have different comfort levels about cleanliness. D and his family are more into hording and clutter than I am. And it gets a little irritating at times, but when D and I lived together we were able to come to compromises about the level of clutter.

I am not a neat freak, yet I like things orderly. But not at the expense of living life. I have some kind of long and psychotic history with cleaning. When I was a kid, we cleaned every Saturday Morning. We divvied up the house and cleaned. My cleaning was never good enough. Was this a blindness thing or a youngest kid thing or was I just too incompetent to clean? I was never sure. But I hated it, hated it, hated it. And procrastinated like crazy.

When I was in high school, I worked at Taco Bell. I had help getting the job from a voc rehab counselor for the visually impaired named Nancy. Part of my job at TacBell was to clean the dishes, the floors, etc. I was so nervous that I was going to do a bad job that I took forever to clean and the boss was always saying, hurry up! Finally, she called up Nancy and asked if she could teach me to clean faster. Nancy, my boss and I spent a couple of days at Taco Bell together working on cleaning. Basically, Nancy taught me some of the blindness techniques for cleaning, which aren't anything too technical, mostly common sense stuff. Make an imaginary grid, start at the left hand corner and work your way down to the right when cleaning floors. Feel things as well as look at them. Stuff like that that was already known to me. But what I remember about this is that I was doing everything they said, yet I would go back and do it over and over because I would feel just one more bit of dust on the floor, or just one more smudge in the sink. The problem wasn't my cleaning technique or blindness, it was my over-eggsaturated expectations for myself. They both told me that there is no possible way in the universe to get something perfectly clean, and that I needed to get in, do the job quickly, get done and not worry about it being perfect. Everybody has stray dust on their floor after they clean. Well, this was news to me. My problem was that I was trying to clean too well, not that I wasn't cleaning good enough.

So, my cleaning issues continued through college. I was very inconsistent. I would try to be so perfect and when I couldn't maintain that, I would just say, "fuck it" and the place would end up a dump. Then, I would be so overwhelmed by it that I would get depressed and just stop living the rest of my life until I got everything cleaned up. I would skip class to clean, I would skip out on socialization, on just  being outdoors. I would punish myself by cleaning obsessively for a few days.

Some of my friends in college started to notice that they couldn't just drop by without me cleaning my house first. And that I would say I couldn't do stuff because I had to clean my apartment. Once after finals, some friends came by unexpectedly to invite me somewhere and the house was messy and I said I couldn't go, I had to clean the house. And they were like, "You aren't serious, are you?" And I was so embarrassed about them seeing my messy apartment, which, was mostly books and laundry and dishes piling up. I'm not talking like, mold infested crust on the walls or anything like that. My friends were like, "Lisa, shut up. Nobody cares. Just come out with us tonight and clean it tomorrow. Shit. We'll come over and help you." And so they did, and we got it done in like an hour or so, and we kind of talked about it and joked around about it, and they couldn't believe the ideas I had about cleaning and how I was so ruled by it sometimes. They were kind of shocked at some of the stories I told them about how we were raised and how so much of the value in my family was placed on how well you could do housework.

I also started to notice at this time how comfortable some of my friends' families houses were even with some clutter and dirt around. I didn't care and it was actually relaxing to be there. Their parents valued things like their children's compassion, music abilities, their community service, their cooking interests, whatever. They even made good hearted jokes about their kid's messy room. Housework was a distant priority that they just did when needed like watering the lawn or taking a shower. It was maintenance, not the center of things.

So, I'm making this too cut and dry. My upbringing was not as simple and whacked out about housework as I feel like I'm making it out to be. But it was definitely a bazaar element of my childhood that I had to shed and get over.

So, it honestly took several years, but finally I figured out the place that housework needed to have in my life. It is kind of like brushing your teeth. You've got to do it, but you want to make it as small and insignificant part of your life as possible and not get too caught up with it. It is just maintenance for god's sakes. It is not something that you have to put too  much thought or energy into. And it certainly doesn't have very much to do with your worth as a person. I refused to care if my family thought I was worthless because of housework, of all things. And once I lowered my standards and de-prioritized it, my living space actually was cleaner more of the time. I knew I could take an hour and do a quick cleanup and even though it wasn't perfect, it was good enough.

Okay, people, I know this whole post is just domestic drudgery. You can bail if you want. But here is where I talk about the weirdness that I have dealt with with my family in regards to housework.

I did not spend much time at home from age 17 to age, well, 33 because being at home with my family was not  usually a place where I felt welcomed or like I belonged there. My mom and my sister were a clique that I was not going to ever be accepted into, and my dad usually went along with whatever they said. So, I spent small amounts of time there, and then when the nagging about how I used too many cups or was too fat or had bad hair or the wrong boyfriend or the wrong job or was not disabled enough for this or was too disabled for that or I had too much laundry or I took too long of showers got to be too much for me to give a shit about, I bailed. Much of what I was nagged about was issues around housecleaning.

I always thought that this was just a difference in personality traits. We were like "the odd couple" and our different levels of clutter tolerance were just at odds to each other. So be it. They can have their perfectly clean and non-cluttered houses and I can visit and then live my life as I see fit elsewhere.

Until the year my mother had cancer and I spent several months at home. You know how, when a crisis happens people talk about how the little, petty stuff just falls away and seems so unimportant and thank god we have our health and why were we worrying about spilt milk? This is how I've come to live as a disabled person. With D and others I've cared for, I've had to live with real messes like leaking bodily fluids and clumsiness that causes messes (including my own) and having to put function over form for accessibility's sake and how to NEVER taken health or life for granted and make like petty shit like housework was all that important. Well, I expected this to happen when I went home and my mother had terminal cancer.

It didn't happen. The pettiness actually got worse.

The very first night I was home, my mother dropped a glass and it shattered all over the kitchen floor. My mother dropped it because the tumor was causing brain damage and she was loosing functioning in her left side faster than she could keep up with it. It was my first day back, my mom was scheduled for major brain surgery in just a few days, and my sister went berserk over a broken glass. She ran around like a drama queen screaming and panicking and being over-traumatized by the cleanup. At first, that didn't make me mad. I figured everyone is under a lot of stress, and sometimes little things will cause people to blow up when they wouldn't ordinarily.

It was what happened later that night that put the "twilight zone" tones in my head. My mom had gone to bed. My sister and my dad were talking and she was still going off about that glass breaking. She said something like, "Well, if she can't hold a glass anymore then obviously she should know not to use glass and only drink from plastic. I'm not going to clean up every goddamned glass she drops on the floor." Whoa. Way to prioritize, sis. Way to not have any empathy whatsoever. Way to be sensitive to how bad my mom must be feeling about, oh, I don't know, loosing her brain functioning and DYING.

That wasn't an isolated incident. It got worse and worse. She started cleaning the floor when just a crumb would drop. I'm not talking picking up the crumb with your hands. I'm talking getting the vacuum cleaner out like several times a day. The sicker my mother got, the more my sister wanted to control little things like the housework. My mom even started to complain about it. She would say that the vacuum was on constantly (and I can attest to this) and that she was not getting some of her care-giving needs met until after my sister would get done with some cleaning.

So, she cleans when she's upset. Is that so bad? Why not just let her? Well, fine. Except when cleaning takes precedent over living life. Since at least my teenage years, we have not been able to put up a Christmas tree or have really Thanksgiving Dinner because my sister finds it all not worth the mess. Nothing is worth any kind of mess, because life is about cleaning. I really wanted my mom to have some kind of special day for her last Thanksgiving and Christmas. Nothing that big. Just get a Christmas Tree and get out the old decorations and have the dinner with all the fixin's. I said I would do all the work. All the cooking, all the cleaning, etc. She fought me every step of the way. For thanksgiving, I tried to do a traditional meal but with some shortcuts to appease her. So it was not a whole turkey, gravy from a mix, stuffing from stove top, mashed potatoes from real potatoes, corn from the cob, cranberries from the can, bread from some kind of Pillsbury premade dough, a store bought pie. Not too big of a deal, right? All I heard was complaining about the mess it would make in the kitchen and how it would use too many pots and pans. And then! I committed the huge crime of spilling some of the gravy on the flat glass stove top! Oh, the humanity!

I had this really stupid, stupid fantasy that we would all sit down together to eat this Thanksgiving meal and go around and say something nice and have a nice meal. Well, my sister and my father sat down, ate up the meal in like the first five minutes, and got up and started cleaning the kitchen. My mother and I were left alone for most of the meal by ourselves.

For Christmas, my dad and I went out and bought an artificial tree and spent a day when my sister wasn't there putting up decorations. It is one of my favorite memories of the last years with my mom. We took out old ornaments and decorations that hadn't seen the light of day since my childhood and reminisced. My mother was too tired to help, but she sat with us in the living room and I would hand her the ornaments to look at before I hung them on the tree. I remember my father carefully cradling the tiny baby Jesus from an old nativity scene in his hands and saying something like, "I've got to be careful with the baby Jesus because we need his help this year." It is the closest I've heard my father come to a prayer. We laughed and it was a nice day.

Until my sister came home and bitched about it. I think it was about two weeks before Christmas and every single day that tree was up, I had to hear her complain about it and how it all better be down by December 26th. I told her I would take it down by Dec. 31st for sure. On December 26th, she couldn't wait for me to do it and she took it down very unceremoniously herself, complaining all the way. I said I would make Christmas Dinner as well. Whatever they wanted and I would clean it up. They flat out refused to let me (they can do that because they are my ride to the store in the no public transportation outskirts of Kansas). They compromised to a catered dinner from Albertson's. Fine with me, but the whole talking through the meal about how much easier this was than my cooking and how the turkey was better was not all that festive. Again, mom and I were left in the dust while they packed up the disposable food containers.

Now, I live in my father's house with two active and messy one-year-olds. I have several part-time jobs as sources of income. None are very demanding but still have to keep track and put in the time. And I am a single mom with very little respite in the caregiving of the kids. I have a partner who has had very serious health problems for the last year and has spent several months of it in the hospital and is still looking at an upcoming long term hospitalization. I have a kid with a (hopefully minor) pending seizure problem. I have to spend my time figuring out how to get things done without the convenience of a car. Sure, I like a clean house, but I have bigger fish to fry.

There was a time, when the kids were about three months old and all the newborn help had faded out, where I made myself a schedule that enabled me to get everything done, including the housework. The problem was that I was going from 8:00am to 11:00 pm (with a feeding or two in the night) with absolutely NO break. I'm talking none. LIke maybe ten minutes to grab a lunch or five or so minutes to go to the bathroom. Showers were sometimes optional. So this schedule lasted approximately three weeks until I figured out that I can't live like that. So I had to prioritize. The most easy thing to knock off was the housework. So, that is what went. Not totally, of course. but it became less frequent. Life got better. Life got good. I started to enjoy motherhood, going to the gym, the occasional social function, Sunday school teaching, etc.

Here is my basic housework plan now: Everyday the kids pick up their living room toys before bed. After bed, I clean the kitchen and do a quick sweeper vac of the floor. About twice a week, I pick up their toys in their room. On Mondays, I get the trash together and clean their room and put new sheets on their beds, etc. On usually Sunday nights, I sort of go through the whole house and pick things up and spot clean and vacuum. About once a month (or it may get stretched a bit farther than that) I do a housecleaning week, in which throughout the week, I take an hour there or twenty minutes here to really do some more heavy duty cleaning. Toilets, sinks, showers, hardwoods, mirrors, major dusting where I move stuff, major vacuuming where I move stuff, etc. It does end up taking the whole week of little minutes here and there to complete. I have learned to live with the fact that I cannot have the entire house spotless at the same time. There are days when I get behind and have to deal with it the next day or whatever. This is the best I can do--and we are not living in filth.

Well, this horrifies my father. He comes here and does nothing but bitch at me about cleaning. He cleans the entire downstairs every Saturday morning and I am not allowed to have the kids downstairs until he is done. Fine. But it is all the piddly-ass crap he complains about during the week that gets to me. I am a stacker of dishes in the sink and clean the kitchen all at once at the end of the day. He cleans the kitchen like, 57 times a day. He gets mad at me for cooking. He eats a frozen dinner every night and uses like, one fork and a cup and then throws away his frozen dinner dish. I try to cook balanced meals for D and myself and the kids. (I'd cook for him, too, but he usually doesn't want to eat with us and instead eats his frozen dinner sitting on the couch by himself). I'm not a gourmet cook by any means. I cook relatively quick, easy stuff that takes no more than a half and hour to make. Last night we had Quesadillas, a pasta salad type thing, and honeydew melons. Tonight we had "breakfast at dinner time" and I made sausage, scrambled eggs, french toast and bananas. Usually its an entree, a vegetable, a bread or grain, and a fruit. I try to cook fresh organic, but I also take shortcuts as well. He doesn't eat the same time we do, and then he complains that I've dirtied up his clean kitchen.

Okay, so this is all just domestic tedium, right? We should be able to work this stuff out. It is just housework! I'd be fine with coming to some compromises with him if he could talk about it like a rational adult. He isn't patient enough to sit down and have a tactful negotiation of duties and guidelines. He just wants things his way and despite who owns the house, I insist that everyone in this house has equal needs that need to be considered and worked with. There is no Lord of the Manor here. I refuse to put up with that.

Today I made something in the microwave and when I took it out, I accidentally spilled a little bit of it. I was CLEANING IT UP when he has a shit fit from across the room because he thought it exploded in the microwave. I tried to tell him that I just spilled a bit of it, but he wasn't listening. By the time he figured out that it didn't make a mess in the microwave, he started yelling about something that did leave some spots last week. So I told him I wasn't going to listen to him yell at me like that and went upstairs.

About ten minutes later, I try to go down to patch things up. I went up to him and said, "So, I understand you want me to cover what I make in the microwave so it is easier to clean and doesn't leave a mess." I was going to go on to say, "I'd appreciate it if I'm doing something that is bothering you, you could just come and tell me nicely instead of yelling at me and treating me like an idiot." But I never got that far. He went off before I even finished the first sentence about how the whole place is a mess (its not) and how "Cleanliness is next to Godliness"-- it says so in the Bible. (NOTE: If you want to debate me on an issue, quoting the Bible is usually never a good route to take. I'll be all over that before you even knew what hit you.). When I said that I refused to have petty, disrespectful arguments about housework and that housework is not the center of life. He says, "Well, it should be and it is the top priority." To which I mentioned things like being kind and considerate, loving your family, respecting your daughter, raising children, educating yourself, doing volunteer work, voting, working on a vocation, working on a vacation, sports, taking care of your health, giving to others, arts, crafts, and music, and spiritual growth as maybe just a few examples of things that might be slightly higher priority than housework. But what do I know?

Here is the thing: I'm used to this. I can blow him off and not care about what he said. But he told Naim the other day that he had too many toy dishes out when Naim was play setting the coffee table. He started scolding him to put them back. All night, he kept telling Naim to put stuff back (he was telling Aaron, too, but Aaron couldn't give a crap.) I kept saying that we would take care of it at the end of the night. (My kids are only downstairs playing for about 3 hours in the evening. The rest of the day, my father has the whole living room to himself.) So then, when Naim did pick up all his toys, my dad went goofy telling him he was a good boy and why can't Aaron pick up his toys? (I'm working on Aaron, but he usually averages one or two toys put away a night.)

So, you just know that some day my kids are going to draw on the walls with crayons or something. You know that they are going to trip and fall and knock something gawd-awful onto the carpet. I may give them a stern talking to about the crayons and make them help clean both messes, but I don't want them thinking their self worth is wrapped up in something as dumb as housework and the worshiping of stuff as a higher value than people. I also don't want my kids seeing my dad yell at me all the time. I'm his daughter, the only woman in the house, and the mother of his grandchildren who quite frankly, already does most of the slave waiting on men hand and foot work around here.

So, is cleaning like this a mental illness/addiction of some sort? Is it just a disguised form of control/abuse over people? Can it be "cured"? Have you ever heard of this before or is it perfectly normal and I'm just a lowlife slob?

And what do I do about it? I'm all for just having a calm discussion and working some of these issues out. But I have too much stuff to worry about in my life and D's life to spend more than two iotas of energy arguing about how many spots in the microwave are my fault. Is it worth moving out? He's only here about four to five months out of the year. Can I handle it? Can the kids handle it? How long should I give him to see if this improves?

I ended up going to D's tonight with the kids and cooking dinner over there. Felt like I should let my dad sit alone in his clean house if that is what is important to him. D is gearing up for a skin graft surgery that will probably put him back in the hospital for six weeks or so. But we've already started a very tentative back up plan in case I have to bail. We can pretty easily move into a three bedroom in his building for less money than we are paying now combined. (About the same for me individually). We would lose about 400 square feet combined. There are, of course, pros and cons to staying and going. It isn't a decision I'm going to rush into especially with his health right now. But it was definitely nice to cook dinner (and clean up) in peace an harmony. Even if his kitchen is a bit too cluttered and smallish for my taste. I'd rather deal with tight spaces and respectful quiet family dinners than worrying that every time I get out a new spoon or drop a grain of rice I'm going to get yelled at.

How's that for tedious, boring bloggery? Any advice?

Why it isn't good to live next to an airport.

I live less than a mile from a small town airport. Something I didn't think about too much until I moved in and had to hear planes landing All. The. Time. My kids are very familiar with airplanes and know how to say and sign airplane.

Once a year, we suffer through the airshow. It is loud. And by loud, I mean, so loud my house shakes. The airshow was this weekend. I can't see the planes, but today I thought I would take the kids outside and try to see what all the noise was about. We went out with my dad and were going to head to the store as well, and suddenly, all the noise stopped. Then, we saw a huge plume of smoke ahead of us. I mean, it was so black against the sky, even I could see it. We weren't really sure what was going on, so we just went ahead and drove to the store.

We heard in the store that a plane had crashed. It ran right into a house that was in D's parent's neighborhood, about a half-mile from my house. When we went home, they had blocked the streets all around. We kept driving further and further out trying to find a way back to my house. All the streets were blocked. We ended up going way west and south out of our way, and when we came up north again, another police block. I got out and talked to the cop, because my dad can't talk to authority figures without accidentally cussing or something, and they let us through to our house.

When I got home, D called me and said that his parents knew the homeowner of the house that was obliterated. Thankfully, she was not home at the time and had come home about twenty minutes after it happened. It seems that no one on the ground was hurt, but the pilot is dead.

I was just thinking today about a plane landing on my house. During the airshow, they get so close it seems like they are on top of you. I was wondering if I could get my kids and run out of my house in time. Probably not. Holy Crap. Another reason to hate that damned airshow. I wonder what will happen to it now?

Anyway, that was the excitement around here today. Of course I had to blog it.

Ladies Who Rock My World

I've meant to give a shout out to Shannon for a while, but I was waiting to take a picture of the lovely necklace she gave me as a gift for my birthday a couple of weeks ago. I can't seem to take a good picture of it, but it is very pretty and nice of her to make for me and oh so fun to get in the mail. Instead, I'll direct you to much better pictures of the jewelry she makes herself (and are available for purchase) here. Check it out.

Also, she has a cool website called Naptime Books, which is a book club that she runs. I really want to try it out sometime, but I haven't been organized enough yet to commit to reading a whole book lately! But I've lurked a couple times and the discussions seem interesting. So, those of you who read more than just blogs, check that out, too. Of course, her main weblog, Peter's Cross Station is a wonderful read and I always learn something new. I also keep forgetting to tell her that D thinks she is beautiful (as do I) and I think if she weren't already married, he'd have designs to run off and marry her. (I'm fine with that as long as they take the kids on weekends. : )

Next, I'd like to point you to the indomitable Twisty Faster. I can't say enough how much she rocks and then rocks some more. I bring her up today because she did something today that was probably just about the coolest thing I've ever seen from a woman in a long time. She has breast cancer and just this week had a second mastectomy. Check out her post for today.

Go ahead, it is very brief. I'll wait.

Are you back? Okay, I love that on so many levels. It is a big F U to the patriarchal ideals of beauty, to the whole notion that if you're body has been disabled in some way then that some way should be hidden and never mentioned again, and that she actually drug herself out of the hospital bed to take that is just so...Bad Ass. And I also like the picture because she is beautiful and she knows it and it shows.

If I were a lesbian, I don't know which of these two women I'd want to hit on first. Aw, hell. I'd go for both of them.

Oops, I did it again!

So, let's talk about the dangerous minefield that is blogging.

A few months ago, I started a system of blogging where I wrote an entry and then post-dated the publication by one or two days. In this way, I could sort of better monitor the large amount of spew that springs forth from my mouth/keyboard. Most posts were fairly innocuous, and if I wrote them and didn't think about them too much afterwords, then they were probably fine and I could forget about them and they would be automatically published. Sometimes, I would write something, and the next day the whole post, or maybe part of it would bother me enough that I knew I either had to fix it or switch it to nonpublic/draft status by the end of the day.

This method has been working out really well for the most part. I can have the freedom to write what I want, thinking it will be for publication which does something to my psyche in that if I write just for myself...I tend to not write at all. Then, I have built in that much needed space to reflect on what I've written. It is an auto modulator. If I think about the deadline all day with anxiety...I know something needs to be fixed. This helps in my asking myself why did I write that horrible thing that needs to be fixed. It's almost as good as a free visit to a shrink. So, it is all therapeutic and works better than anything I've done so far between drafting and never writing or publishing anything and hitting publish the second my brain delivers its pressurized drivel to my fingers faster than I can type it.

So, all is good....

Except for...

When I'm planning to unpublish something I wrote right after my kids go to bed but instead I find myself sitting in the ER with my son when the deadline comes...

and goes...

And the thing gets published.

So, I'll get to my ER story in a second. But, yes, I decided that what I wrote about the extended family was just fine and dandy writing for me to sort out for myself, but really wasn't blog worthy or sensitive enough to the people involved. Someone told me once that I was "ballsy" for writing about the in-laws the way everyone wants too. I don't know that it is ballsy, I just don't have anything to lose. But just because I don't really care that much about the consequences doesn't make it the right thing to do. So I planned yesterday morning to send it back to draft and leave it there, but I did not get a chance to get to it all day. I figured I would have four hours after the kids went to bed and, alas, I didn't and it was published and I wish it hadn't been. And, even better luck for me, today when I wanted to take care of it, typepad was down for the majority of the day and I lost all access to my site.

Sometimes I see this blog as just something that is out there for destiny to deal with. If someone reads something on my site, maybe they were meant to read it at that particular time. I could never know this and seek them out, but they can seek out what they need and may find it here. I know it has happened when I get letters from desparate mothers whose children have just been diagnosed with a disability. Or a scared disabled mom, or pregnant mom of twins who thought she was alone and was so grateful to find that she wasn't. Or the times when I read other people's blogs and find something there by accident that makes me not feel so alone. So, the thing got published and I don't think the world is going to end because of it. Maybe it helped someone out there who just happened to read it on the day it was up. (And aren't the google search stats fascinating? Sometimes I read the search perameters and just feel their pain, like if it is "life expectancy glioblastoma multiforme". Other times I read them and feel their psychosis! And I'm still highly amused that "I hate Oprah" is still the number one google to my site. But I digress...)

I don't think anything I wrote was so awful, but I always think that and then one or two little lines or words will get someone else irked and all hell with break loose. Besides, it was really long and probably really boring and self-serving...so it's gone now. I still like my system, but next time I decide to unpublish something, I'm going to take the two seconds to do it the second I think of it. You all should see my list of draft posts. Well, then again, maybe you shouldn't.

Aaaaaanyway, about the ER trip. Yesterday, Aaron was running a slight temp in the 99-100 range. As per my instructions after his last seizure, I immediately gave him Tylenol to bring it down. It never really did bring it down all day, but it never got any higher, either. Then, at bedtime, he had another seizure. It was more focal this time and lasted about 3-4 minutes. It was not really as much a tonic clonic type, it was more of a drop seizure and then convulsions on the right side of his body.

I was a little concerned, but not much because we had been through this before. His ped told me that I really didn't need to go to the ER or anything if he had another seizure, but to call his office when it happened, night or day. I wasn't even in a hurry. Aaron was a bit dazed and out of it after the seizure, so I had him stay up with me for another half hour or so to comfort him and monitor him before I put him in bed. I gave him more Tylenol and he fell asleep the instant I put him in bed. Then I called the answering service.

A nurse called me back and asked me all the pertinent questions, and because the seizure was focal (not all over his body) and his temperature was not that high, she didn't think it was a febrile seizure. I kind of felt like it was, but what do I know? She wanted me to bring him to the ER right away. And not just any ER, the one all the way across town. The big, huge, trauma 1 ER that was in the "bad" section of town so I knew there would be a billion people there. I didn't want to go, but I didn't want to take a chance, either. She offered to have the on-call ped call me and give me his opinion, so that's what we did. He wanted him to come in as well. He said he would tell the ER I was coming in and he would meet me down there.

So, by this time, it is like ten at night. D was over, so he stayed to babysit Naim, who was sleeping, and my dad and I got Aaron up and drove him all the way across town. We were triaged pretty quickly but then were sent out to wait. And wait. And wait.

I knew this would happen. There were like, 40-50 people in the waiting room of that ER. I started to do my own triaging of the patients. I asked a few people whose kids looked about as sick as mine (not very sick) how long they had been waiting. They were telling me that it was up to 5-7 hours. There was a three week old baby there with a high fever who was also supposed to meet the ped on call who had been there for 4 hours. She was crying so hard for so long that Aaron kept putting his hands over his ears. And more people were coming in who looked sicker than my kid.

So, I calculated that by the time we got in, it would almost be morning and we could just go to the doctors office. I strongly suspected that if we did get into the ER that night, the doctor would look at Aaron for two seconds and tell me we needed to follow up with a ped neuro to get an EEG. Well, my doctor's office could do that,too. And we would get a bit of a night's sleep in the process.

So, at about 1 am, I told the ER staff I was leaving. We got home at 2ish, and I put Aaron to bed. At 8 am, I called my doctors office and gave the whole spiel to another nurse. I said exactly the same information, and she thought it sounded like a febrile seizure. She thought he should be seen, but no hurry. Can I come in at 4:45pm?

Sheesh. Do they drag you into the ER just to pay the bills or is it a liability thing? They must have some idea that you are going to have to sit in the germy, gross waiting room with a sick baby for upwards of seven hours. Do they really think that is the better option than just waiting until morning? I mean, I would rather have them tell me that I had to stay up all night and watch my child at home to monitor him than to drag the poor kid to the ER. I wonder if I'll get billed for the three seconds we spent with the triage nurse. His last ER visit was over $2000.

He was grumpy and feverish all day today, too. When I took him in, the doctor found that he has hand-foot-mouth disease. Which, in a way is good news, because that means that it was probably almost definitely a febrile seizure rather than epilepsy or some kind of brain tumor. (Thanks, Dad, for bringing that up. I only allow one brain tumor per immediate family, thank you.) But, as I suspected, she is also referring me to a ped neuro to get his opinion.

She thinks that because of the length of Aaron's seizures, it might be good to put him on a certain medication that will shorten the seizures. She wrote down the name, but I can't read it now. I'll have to ask D or someone tomorrow to read it. It is something that I would not give him everyday, but have it around to administer when he has the seizure to get him out of it quickly. The danger is, I guess, that seizures can affect heart rate and respiration, and thus, pulse ox. So the longer the seizure, the longer the kid is with compromised oxygen to the brain. Since Aaron has had these seizures with very low temps and for long periods of time, she wants me to have "a plan." She wants me to make myself a little kit with thermometer, timer, Tylenol, this medication, and maybe like a laminated card giving directions about what to do and stuff. Anyway, all stuff I'm supposed to talk to the neurologist about.

So that is on the agenda. Now I just have probably a few more days of Aaron feeling crummy, and then I'll look forward to Naim getting hand-foot-mouth disease as well. With twins is just pointless to even try to save him from it. But supposedly once you get it, you don't get it again. (And, no, dad...its not the disease that cows get. Cows don't have hands.)

Every Paragraph I Write About Watching my Father Date Is Going to End With the Phrase, "Somebody Kill Me NOW!"

So, my father is here for the summer. He usually comes for two months in the winter and two months in the summer. There are some good things about having him here, and some bad. It is all very complicated when you are sharing a house with your parent at 36 after you haven't spent more than two or three weeks with them at a time since you were 17.

Here is one thing I've learned since living with him. I used to drive myself absolutely crazy spending four or five hours cleaning house until 2 am the day before he got here (because 9 pm-2 am is the only 5 hour block of time I have to do anything.) I would literally make myself sick doing it, because my father and sister have some sort of cleaning obsession...but that is a whole 'nother post for another time. Anyway, he would come the next day and bitch about the house being a mess and clean everything over again. So then one time, I can't remember what was up, one of the kids was sick all night or something, and I couldn't get the house cleaned up before he came. And the next day he bitched about the house being a mess and cleaned everything over again. Hmmm. I thought. Five hours of back breaking work vs. 0 gets me the same results. I'll opt for the zero from now on. Actually, I decided to do what I call "courtesy cleaning" I take about 2 hours to clean the place before he comes, the same thing I would do for any guest. Okay, maybe a little less, because most guests don't come to my house and immediately start cleaning my floors.

There has been a lot of speculation and gossip from the in-laws and other relatives about my housing situation. Here are the facts: Before my mother died, they talked for years about buying a second home for themselves out here. Every time they came out here they looked at real estate. Right before my mother died, they put an offer on a house. This kind of happened in the blur of my mother's illness and that hyper-hysteria that happens when someone you love is dying and you want to fulfill their every wish and you don't have a clear head yourself. That offer was rejected and literally a day later, my mother died. Although she had terminal brain cancer, she might have gone several more months, but she actually died very suddenly of a pulmonary embolism, a complication caused by the heavy medications she was on. So it wasn't as if we expected that she would go that quickly. My father and I decided about 8 months later that he would buy a house out here and I would pay the expenses. He owns the house and it is paid for. I pay property taxes, utilities, insurance, the stupid homeowners association fees, and some maintenance costs.

But I am purely a renter. There is no guarantee that I will inherit this house or be able to keep it after my father dies. The entire estate, the bulk of which is the wrapped up in the two houses he owns, will be divided equally between my sister and I. Both houses were bought at comparable prices, but although the Kansas house is larger and nicer, this house is appreciating a hell of a lot faster than the Kansas house. So, I may end up owing my sister money. To pay her and keep living in this house, I might be able to get a mortgage and pay her off that way, or else I would have to sell this house and pay her her share.

The other issue is that my mother put 'my part' of the inheritance into a trust and made my sister the trustee. This is because she thought that if I received money I would lose SSI payments. But she never talked to me about it and she didn't know that I don't qualify for SSI any more and will never qualify again. I've paid enough FICA to qualify for SSDI, which is a long-term disability insurance program, not strictly an entitlement benefit. Therefore, it does not matter how much I ever have in assets. SSDI is not contingent upon any amount of wealth. You pay enough quarters to social security, you get a percentage of what you paid in. End of story. Now, I suppose the laws could change, but I also suppose it is equally probable that my sister could develop retinitis pigmentosa or some other disability and be up a shit creek as well as far as that goes. I know my mother meant well. She had a folder with her will stuff in it and it had a newspaper clipping about parents whose kids had Downs syndrome who had left their kids money and then the state took their benefits and health insurance away. This sucks, but it hasn't pertained to me since I was about 24 years old.

So, I've seen enough people get into such huge fights about inheritance money so much that it destroys families that I just don't worry about it. I pretend that whatever potential inheritance doesn't even exist. It seems like worrying about it as much as my sister does would be like putting a big ticking time bomb on my dad and just waiting for him to kick off. I don't want to live like that. So, I just dismiss the whole thing. With my sister as trustee, I might as well kiss that money goodbye anyway. Not that she would spend it on herself (she would save it for herself because with my kidneys, it is a good chance I'll knock off before her anyway), but she would say things like, "Well, you can only use this money if you buy this house that I approve of in Olathe, Kansas" or something. You'd have to pay me a lot more money than that to get me anywhere near Kansas again. No offense, Kansans, but its just not for me. So, I'm grateful that I get to live here for below market rent, but I'm a renter, period. If it doesn't work out, I'll move down the street into D's building or something. We'll still be in our same neighborhood with the same transportation, church, etc. so it would be a bit more money and less space, but it would not be a devastating lifestyle change or anything.

This house is very hard to have kids in. I had a lot of say in location, but my dad picked the house. It is a nice three bedroom with about 1900 sq. feet. My father has the master bed and bath downstairs. When he is not here, I literally close the door, per our agreement, and forget that part of the house exists. The kids share one bedroom upstairs and I'm in the other. We have one bathroom upstairs and a small loft area where my little office is. The living/dinning/kitchen is a bit cramped, especially with D here and we can barely pass each other in some tight spots without stepping over each other. I complain about the size, but not seriously. I know full well that millions of children and families in America and throughout the world would consider this a mansion.

There are many very nice features in the house, but it makes it a little nerve-racking to have small kids in. The floors are hardwood and the cupboards are cherry and granite. The banister is cherry and it has some craftsman woodwork around doorways etc. It has a huge stone fireplace in the living room with a chunk of old growth timber for a mantel. It has a lot of potential to be very nice, but we haven't really done anything decoration wise since moving in, so it is kind of plain right now. I keep thinking I'm going to wait until the kids are out of the throwing food across the room stage before I do anything major. And again, since I am not the owner, I can't do anything that major. Because of the woodwork, I get a bit panic stricken all the time trying to save it from my two boys and my quadriplegic partner. All three wreak havoc on baseboards and door jams. The granite and cherry and hardwoods are lovely, but I get a little jealous when I go to other people's houses and I see their Formica and vinyl floors. So easy to clean (and replace, if it comes to that!).

Anyway, so my dad comes and he blurts out with no context whatsoever, "Carolyn is kind of my girlfriend and kind of not." And then proceeds to gush about the (previously unbeknownst to me) Carolyn. It has been almost three years since my mother died. She was only 55 when she died and my father is now 64. He is a young, healthy 64 with a bit of money, a pension, and good looks. I knew this was coming. Carolyn sounds very nice and I am so grateful she is not 23. She is actually a couple of years older than my dad and is also a widow, previously married for 42 years. She also had her own career and her own money, which is good. Some of the women my dad briefly dated previously were a bit desperate, clingy and a bit scary. I don't mix well with needy, clingy women. At least the I NEED A MAN type of needy. I try to understand them, but basically, I just don't. They are like aliens to me and I don't know what to talk to them about. One good thing (for me at least) about my father is that he is relatively obtuse about giving women attention, so no clingy, needy woman is going to last too long with him.

I want my dad to find someone and be happy. But it's JUST SO WEIRD!!!! I feel like I'm living with a guy in junior high. He talks about her all the time. He jumps up and runs to the phone every time it rings, and if it is her he runs into his room and slams the door and stays in there for an hour. The fact that my dad can even maintain a conversation with anyone for an hour is kind of shocking, okay? He lost a bunch of weight (he was never fat, but he had a bit of a gut and it is gone now.) And, get this...He just paid $300 to Arther Murray's for DANCE LESSONS!!!! WTF? My dad can't get from point A to point B without lumbering around the house with thudding footfalls that make the whole house shake. My dad is a barely educated, beer drinking, cussing, union man railroad worker. He knows about welding, not the foxtrot. He dresses up for these dance lessons which are almost every night and comes and asks me how he looks. He came in tonight and lumbered through the rumba while telling me his dance instructor had nice cleavage. Oh, it's WEIRD!!!!

He is already talking about inviting her out here, not this summer, but sometime in the future. (She is in Kansas, if I haven't said that.) And intellectually, I'm very okay with it all. I want to give them the space they need to decide if it is going to work out or not. I want to be supportive of him with the whole dating thing. I try to keep my nose out of any judgments for the most part. If she comes out here, I want her to feel welcome here. I don't feel any sort of disloyalty to my mother or feel any need to compare her to my mother at all. Its apples and oranges to me. Best case scenario, she could end up being a nice female friend for me and the boys as well as my father. So, really, I am cool with it.

But it's just SO WEIRD!!!!

In case I haven't said that enough.

Heh, though, I pity the day she meets my sister. My sister is going to lose her little controllfreakishly insane mind over this. I just hope my sister doesn't manage to put too much negative pressure on my dad about the whole thing and screw it up for him.

Okay, but it's WEIRD. But I guess it will be better than everyone thinking that he is my husband and the father of my kids when we are out together if she is with him. Ick.