Twinkle Little Star

For the "C" Family

I don't know if you still read this, but...

Both D and I were saddened to hear of the loss of your father. I always very much enjoyed his company on the few occasions that we met. He was  a very entertaining, smart and vibrant man, very gracious and hospitable host, and obviously a very loving father.

I know D wants to send something to you and I will try to help him with that but due to his hospitalization, it might not be in a timely manner. I'm not sure if I should on my own. So, if you read this, please know that our sympathy for you transcends any differences we may have had, we are thinking of you and wishing you peace at this time.

Eeeexxxxhhhhaaaaaaaaaaaaaaaaaaaaaaaaaaallle

My dad left for Kansas on the 8th, and he took his little dog, too.

Despite the fact that now I have to clean my own kitchen--which really sucks--and run my own errands--which only slightly sucks because he didn't really do a whole lot of that--I am always amazed at how much better things go when he is not here. It takes about a week for things to click again, and then it is fairly smooth sailing.

It isn't so much that he DOES anything so terribly wrong, he does a lot of little things that just don't jive with cooperating as a family. We are so disconnected that once we both rented the exact same Netflix movie within days of each other and both watched them separately. That kind of amused me. And I could do the separate lives thing, like I've done with roommates in the past, where you just sort of coexist. But at least for the most part roommates try to be considerate and know that they are coming into the arrangement from equal positions. My father thinks his needs trump everyone else's. As I've said before, I can take it--I just ignore it--but it becomes really hard on D and the kids.

I could bullet point a bunch of things that are little that he does. No one thing is that big of deal, but together they make my life much, much more complicated that necessary. Like:

• He leaves very dangerous things around the house, garage and yard. He once left a sharp pair of hedge clippers in the babies' stroller. I found them again out in our patio on a chair. He left electric hedge clippers (the kind that look like a chainsaw) on a low shelf in the garage. He leaves knives and the cheese shredder and things down low. He leaves his heart medication where the kids can get it. I am constantly having to on the spot baby proof and I get nervous leaving the kids in another room unless I've inspected it.
• He leaves the garage in a complete mess. electrical cords, tools, whatever, just thrown any which way. I've tried to keep some things together like the Christmas stuff or my gardening tools. Christmas stuff gets dissipated everywhere. Gardening tools, gone.
• Along those lines, people say to me that it must make me feel better to have my dad in the house so I'm not alone with small children. Well, it might...except he often leaves the doors unlocked all night long. I have to always double check it before I go to bed.
• He crabs at me at least monthly that I need to pick up the dog poop and make the dog poop across the street in regards to a future, potential guide dog that I don't even own yet. But! The kids and I were out planting some annuals the other day (with kitchen spoons since my gardening stuff is gone) and there was Abbey poop EVERY THREE TO FIVE FEET. It was EVERYWHERE. The kids kept saying "mama! dog poopies!" and spooning them up for me to see. Lovely.
• Every time he leaves I go around and match the lids to the pots and the storage containers with their lids and have all the baking stuff together and the silverware together, etc. And we go along like that, happily. Naim (and Aaron on occasion) help me empty out the dishwasher and put most of the stuff away that goes on the bottom shelves and drawers. They manage to put it all in the right place, but my dad messes up everything. And not always the same way, either. So one day I can find the measuring cups over in this drawer and the next day I can find them in another, neither of which are where I always put them. I spend A LOT of time simply finding things. And I'm blind, so I have very little patience for that shit.
• He complains if I give the kids a small cup of his orange juice or if we eat anything he has bought at the grocery store. However, he eats my peanut butter, my crackers, any and all condiments, any food that I make for dinner if he is around, potato chips, any kind of snacky food, etc. Now, I don't really care because I think feuding over food is asinine, but since he can and does go to the store ANY TIME HE WANTS, and I have to plan ahead and order online, it gets really irritating that I can't use his things when he has eating all of mine.
• Then he says just purely asshole-ish things like, "maybe you could get a little refrigerator to keep in the garage for some of your stuff so I can fit my food in the fridge better." Um, excuuuuse me? First of all, I am the one who is feeding at least three, sometimes four and sometimes five people three meals a day. Second, if you would share food like a normal human being, then we wouldn't have to have doubles of everything and we would have more space in the fridge.
• Oh, and he gets mad at me for cooking. For cooking for my children and I and D. He likes the nights when I make sandwiches or just feed the kids canned ravioli. If I cook anything at all, he flips out. And first of all, I am no gourmet cook, so it isn't like I'm doing complicated recipes with 500 ingredients and 50 pots and pans. One night it was because I used a frying pan and a small sauce pan. Another because I used a 9X13 baking dish. I keep telling him that I cannot feed his grandkids chefboyardee every night and still fulfill his wish that they become big, strapping tall men. (Nor can I afford it when someone is eating my food without contributing. My grocery bill goes up around $100/mo. when he is here.)  Secondly, when we were growing up, My mom (sometimes my dad) usually cooked and my sister and I alternately cleaned the kitchen each night. Methinks he has selective memory of all the crap my sister and I cleaned up after their cooking. They (gasp!) actually used pots and pans too!
• He bitches about the potty training status of my boys (which I haven't had the inclination to blog about...because uuuuggggh, it isn't even something I'm comfortable working that much on when my dad is in the house.) yet he brings the little dog out here who he has had for ten years. And that dog is not anywhere close to being housebroken. Daily, DAILY accidents. And if I find them, or if the kids have found them by walking in dog shit, he doesn't even offer to come clean it up. He will clean them if he finds it first, but it all involves a string of irrational yelling and cussing and threatening to kill the dog and wishing upon her a speedy death. And my kids actually hear this stuff. And sometimes repeat it. And let me just say, the f word coming out of your three year old's mouth is not near as hard to explain to strangers as is your three year old saying "Abbey! I wish you would die," to the little girl in tumbling class who happens to also be named Abbey.
• He does that archaic thing that men do sometimes where he basically says to the boys "ah, you aren't hurt/there's nothing wrong with you/boys don't cry." Or he says things like "they need to learn to be competitive! You need to get them into sports or something where they can compete!" Yeah, dad. Competition is all around us. I'm more worried that they learn to cooperate and share and be generous, compassionate individuals thankyouverymuch. Not only is that unhealthy, but it also gives boys a bad view of women, as what they are often derogatorily compared to is some form of the feminine if they act with any emotion (or express interest in anything feminine or pink.) It also breeds that asshole type of guy who feels the need to prove that he is a "real man" every five seconds by putting women and gays down. This drives D so nuts that at some point I think he might call CFS on my father...or pack me up and move us all into his one and a half bedroom apartment.
• He insults D's role as a father often by saying things to the effect that they need a male role model around to teach them to play ball or act more manly. He suggested that I get the boys involved in "Big Brothers." Well, great program. But first of all, I know there is a long waiting list for boys who actually don't have fathers to get a big brother, and second, if he wants a man to play ball with the boys, he can get his damned ass off the couch and play ball with them.
• He watches TV ALL. THE. TIME. He doesn't even bother to turn it off when he leaves. And it is loud. (and if I think it is loud, then it is LOUD.) He has an obvious hearing loss, probably due to working around heavy machinery his whole life. But he won't do anything about it. I at least have the courtesy to put on my hearing aids when I 'm going to talk to him.
• You can't even just have an hour to yourself sometimes. Because he will just all the sudden have some sort of need or crisis that you have to help him fix NOW!!! Or he'll just want to tell you something arbitrary. He barged into my room one morning at 7am, waking me up in my non-hearing aided state to tell me that the TV wasn't working or something.
• He is completely oblivious to the disrespect he has for me, D and the kids. I have too much on my plate with not enough support to deal with that shit.

The things is, the boys really love him and he can be good with them. And we could have a cool little intergenerational family thing going. But the energy it takes from me to monitor everything and enforce any sort of rules with him is exhausting. You practically have to strap him into a chair forcibly to have a conversation with him. And even then, he is looking the other way and not even paying attention.  I almost feel like I need mediation to deal with this.

Something happened the other night that sort of woke me up. I made an honest and unintentional mistake where I caused some damage to the house. And I hate to say this but it was blindness related. If I could have seen, it wouldn't have happened, or to the extent that it did. I'm already in the process of getting it repaired and it is going to cost me a few hundred dollars to fix it. Which I would do no matter what my relationship was with my father. But the night it happened, I literally FREAKED THE FUCK OUT. The fact that if he saw it, he was going to fucking kill me and I would never hear the end of it. And the fact that I, as a newbie "homeowner" don't know anything about house things, I couldn't just call him up and say, "hey, I made a mistake, I'll pay for the damage, but I don't know who to call or what to do to fix it" really pissed me off. I have had to basically go around and interview everyone I know about it to get advice and referrals. And then, the next day, I was in the kids bedroom putting away laundry and I don't think I had my hearing aids on. Naim came around the corner suddenly and did a loud growl at me because he was pretending to be a monster or a dinosaur or something. And for a split second, I thought it was my dad and he had found the damage. And I was hit with such a panic that it practically blew me over. Over some damage to the house. This is a nonproblem, or a mere irritating annoyance. No one is dying here. Nothing is doomed forever. No civilizations are being brought down. I have to call a repair person and shell out a few hundred bucks. What is living here doing to me? It is the same panic I had growing up. The childish panic of being the loser screwup that I thought I had gotten away from.

The kids are getting older and more impressionable. My tolerance for what he did around them as unaware babies  has dwindled  significantly.  Here is the thing  he is going to have to understand: NOTHING. Not his coffee cups or his poopy dog or his TV or his dancing or his damned house are more important to me than the well-being of my boys. NOTHING. The level of disrespect he has shown for me, D and the boys and the level of disrespect he models in general is unacceptable as the boys grow older and start to understand what is going on. Between now and his next visit in summer, I'm going to come up with a concrete plan and rules that need to be followed in the house...and also hopefully just foster a more cooperative, loving family and household in general. (I may have to seek mediation or someone to help me out with this, I'm too "blinded" by the close ties to see it objectively for what it is sometimes.) And if he doesn't improve significantly, I am going to have to leave this arrangement. I have strong, strong emotional ties to this house. To this neighborhood. And to the idea that my mother wished for when she died that my father and sister and I would stay close and care about each other. But both D and I feel that being good parents, having a positive family life, not having to run up and down the street to see each other and care for each other, having our kids and our kids parents be respected, is worth more BY FAR than a nice house with cheap rent.

Okay, I think I needed to write all that out, but that was totally not what this post was supposed to be about. I was going to say how nice it is to be healthy again. I have had what was probably bronchitis for the last two months. I was coughing nonstop. The kind of coughing that makes your abdominals ache, and keeps you up all night and makes you feel like gagging and just is exhausting. The kind of coughing where people start to look at you funny and edge away. I didn't go to church for two months simply because I knew I would cough all the way through the service. It was often hard to have conversations with people.

I tried humidifiers and cough drops and tea and cloroseptic and gargling with hydrogen peroxide and zinc tablets and sitting in the steam room at the gym and cough suppressants of every kind and everything. Nothing seemed to work for more that a few hours. Finally, I tried live probiotics, the kind you have to refrigerate. I am not 100% sure that this is what did it, but within a week after starting them, my cough improved about 50%. Now, two weeks out, I think I'm about 85% there. I have maybe one or two coughing attacks a day rather than 10 an hour. It is SOOOO NIIIICE to not have to cough all the time. It is the kind of sick where you are not so sick that you can just lay down and quit life for two months or check yourself into the hospital, but you are sick enough that it makes every day about sludging through and just trying to get the basic things done. I was so tired all day I can't even describe. Every minute I thought about sleeping and the smallest tasks seemed huge. The kids watched WAAAY to much TV.

So, I'm back to doing Weight Watchers and planning meals and cooking! (Without someone monitoring my dish usage!) Tonight the kids and I made a really good homemade pizza with pineapple and canadian bacon and lots of stealth veggies for the kids to eat and only 5 WW point for me. Fresh food again!  I'm sleeping 8 hours a night. I've started exercising again. D and I have set up a schedule where I go over there to work fairly early so I can get out of there early and have the whole rest of the day to do stuff with the kids or exercises or do "school" or whatever needs to be done...and I'm actually getting stuff done. I can tell that I still have a ways to go and still need to take it slowly and get lots of rest (I did 20 minutes on an exercises bike my first day back to working out and had to quit early because my chest was tightening up something awful and I was coughing up an embarrassing amount of yuck that I could no longer hide.) But I'm just trying to do 20 minutes a day now and work my way back and make sure I get to bed early. I have limited myself (and made myself) do an hour of housework a day after the kids go to bed. Whatever I can get done in an hour is great, then I just forget about the rest. In the long run, I get more done this way because I am doing it every day instead of being so overwhelmed by the sheer volume of work. (Very flylady of me, huh?)

We are STILL in the throws of potty training and Aaron and I are struggling through some tough behavior issues. But I feel like we are pushing through them as best we can. I've become a much more patient and loving mom lately. I've been able to give Aaron some extra one on one attention and a bit of babying that he seems to really need right now. (I'm sure I'll write more about this later.) D is status quo at the moment. So it isn't as if there aren't problems to deal with, but it is so much easier to deal with problems when you have energy and are not coughing up a lung. And you are not forced to worry about hedge clippers and dirty frying pans.

The Sweetest Day

D is home from the hospital, now. And he's pissed. He has done his own research to find out what happened, and it turned out that there is such a thing as intrathecal baclofen withdrawal, which can be very serious. It causes wild blood pressure fluctuations (check), fever (check), severe spasticity that can result in autonomic dysreflexia (check) and altered mental state (check, check and triple check.) All of these symptoms can then mask an infection (check.) When he went to the hospital this time, he had a new infection, pseudomonis (sp?).

It turns out, according to this article in a medical journal dating June of 2005, the new best practice is to not remove an infusion pump when their is infection present unless everything else has been tried first. The danger of any infection around the pump is that since the catheter connects the pump directly to the cerebral spinal fluid, bacteria could bypass the blood/brain barrier and infect the brain. How are they treating this now? By putting the appropriate prophylactic antibiotic in the pump itself (along with the usual baclofen) until the infection clears. This has worked in the vast majority of patients studied. It saves the patient from two surgeries and two or more months of pain, and forgoes the danger of the intrathecal baclofen withdrawal.

AND THEN, he gets sent home with an IV + an oral antibiotic and plain ole' Rite Aid pharmacy refuses to fill the oral antibiotic because of a serious drug reaction that occurs with one of the antispasticity drugs he is now taking. Nice catch, pharmacist. Bad slip prescribing doc. So now he is on two IV antibiotics. So he has two bags hanging off of the PICC. And this is something we have learned. If you ever have to get a PICC line, get the double port one. For some reason, they don't like to do this, they like to do a single port one. But every time D has had a PICC and we've argued for the double port, it has ended up that he's needed it. Besides then you can do blood draws and stuff with it. Anyway, I think one of the issues is that his pain management doc, the one who controls the pump, went to India for a month and left a NP in charge. I'm sure that the NP is great in many things, but this was a complicated situation and an actual real live doctor (or two) should have been brought in. D says he is done with that pain management clinic.

And as long as we are talking about medical things that piss us off...here is another thing. I have been very, very good about not writing about the in-laws, haven't I? But this little tidbit pissed both D and I off right good. It is not really a secret that I think that one of D's relatives is, well, a dumbass. Not that he is intellectually challenged, I think he is very smart. But he doesn't make decisions with his brain, he is driven mostly by his tiny, widdle, ego. So he has been sick with an infection. And he finally went to the doctor and got antibiotics. And for whatever reason, he got really sick on these antibiotics. Okay. So a normal person might call the doctor and get his scrip changed or perhaps get an antinasuea scrip or whatever. Not him. He is going to tough it out. So he stops taking his antibiotics after only a few days.

Ok, besides the fact that this is just stupid for his own health, he has an immune compromised brother with MRSA. I have an MRSA colonization, and I would not be surprised if his mother and father do too. His mother and father who are in their 70s with health problems. If you are not familiar with MRSA, it is a superbug. One that is very hard to fight because it has grown resistant to all but a few antibiotics. How did this happen? There are many reasons. Antibiotics in the animal meat we eat is a big one. But another big factor is caused by people who have abused their antibiotic use by stopping them too early. If you stop too early, you kill only the weak bacteria and the stronger ones go on to breed even stronger ones. They become so strong that they become immune to the effects of antibiotics. This is at least sorta, kinda commonly known? Right? I know it is known in our family.

So, he is too much of a tough guy to go see the doctor (or just make a phone call and a trip to the pharmacist) to straighten this out, so he is going to endanger the lives of his brother, his mother and everyone else who is immunosuppressed? I know the correlation isn't as direct as if he sneezes on his mother then she will get infested with a superbug. But it is just so goddamnned disrespectful to people who are fighting for their health and life in the sea of infections we all live with now. Why not just go blow cigarette smoke on someone with lung cancer, why don't you? (And to end this on a snotty little corollary note, I hope his significant other was able to hold him down and shove the needed antibiotics down his throat, as apparently I was supposed to hold D down and make him show me his foot wound way back. You know, because we women "caregivers" supposedly are to be held totally responsible for the medical decisions of our perfectly competent male partners.)

</snot>

Anyway, D got better and better each day in the hospital as far as coherence and withitness. He is far from being home free on this thing but that first week home was really goddawful and it is much better now. Doing antibiotics, laying low and trying to control pain and spasms as much as possible, and waiting it out until the next step can be taken. Hopefully that will be putting the pump back in. But to think there was a possibility that we could have avoided most or all of this is really mind numbing. This has turned out to be "A REALLY BIG DEAL." Every time a major infection like this happens, I know that this may be it. This may be the time he doesn't recover and it gets him. These superbugs are getting harder and harder to fight; they are running out of antibiotics to try. When he went back in last weekend, I was really thinking...what if this is the time? What if I have had the last coherent conversation with him? What if they run out of options? And every time he beats it, I'm happy, of course, but I know it is bringing us one step closer to the time when it really is the one where he can't beat it and there are no antibiotics left to try.

This knowledge I carry with me always. The fact that any one little thing could change everything in an instant and their is no guarantee that there will be another day with someone you love. On Saturday, my dad wanted to take me and the kids to the coast because it was a nice day. But the kids hadn't seen their dad in about 2 1/2 weeks and woke up in the morning asking to go over there. It was one of those things where I would have liked to take the kids to the coast. My dad does not often ask to do stuff with us. He is always busy doing his own thing. But I thought, what if something happens? What if I tell my kids we can see dad tomorrow and then tomorrow never comes? I could not live with myself to have to tell them again that they couldn't see him and this time it is for good. This is how I have to think and balance things out. Of course my dad could get hit by a bus and fall down dead and I would feel bad that we didn't go to the coast with him, but the kids weren't asking to do that. They were asking to go to daddy's house. They had been asking for days. And I kept saying soon, when daddy gets back from the hospital. (We did not go visit him this time because we were all sick ourselves.) So I kept putting them off and putting them off. But I am not ready to put them off forever. Maybe that day will come. But not today. Not today.

So we went over to his house and he had not gotten out of bed since he'd been back, nor had he been outside (except for transport to and from the hospital) in over three weeks. So my goal was to get him up into his chair and take a walk with the kids outside. It took quite a while to get him up. Lots of having to stop for spasms and dizziness and lots of tubes to rearrange. But we did it, finally.

And it was a nice day for us in February. And sometimes it is easy to feel bad for all the stuff we go through together, but that walk was the sweetest day. It was like triumph and winning and gratitude and peacefulness and joy all mixed together. The kids were happy, we stopped to see a cat, we stopped at the gazebo, we stopped at the playground. The four of us. D holding Naim's hand in front of Aaron holding my hand on the sidewalk. Would I take this for granted if we could do it everyday with no IVs to worry about and no hospitalizations to work around? Probably. There may not be much good about this health crap, but at least it teaches you to know, and know deeply, a sweet day when you get one.

Glad to have Dad back. (All those packs on his lap? That's all the IV bags and infusion pumps in there.)

Aaron still refuses to be photographed. He feels no obligation toward his public.

D took this picture. Caught Aaron finally.

Christmas 2007 in Chapters

Chapter 1: Zoo Lights

Zoo lights kinda sucked most of the time and it was mostly my fault for not thinking it through well enough. The kids (and by kids I mean Aaron) broke my white cane, so I've been using another telescoping sorta sucky one. On the train, I threw it in my bag. After a half-hour train ride, I got off and somehow no longer had it.

Okay. Well, I'm meeting another mom so that makes it easier, and there are supposed to be a lot of lights, right? So maybe I will be able to see better than I usually can in the dark. But I waited and waited and waited at the designated spot, and she didn't show. I waited for about 40 minutes and walked around a bit to see if I missed her, but the kids were getting antsy and I had a decision to make. Should I go it alone or get back on the train and go back home? I decided to go over to where the entrance of the zoo was and see how I did. I didn't do well. I couldn't even tell where the line was or where to go to get in. It was one of those things that was going to be dangerous and miserable to get through, so I turned to go back home.

Right when I was turning back to head to the train, she appeared. It seemed that I had said to meet at the elevators closest to the zoo and she had only thought that there was one set of elevators coming up from the train station and was waiting at the other one. I did walk up to the other one once, but we must have missed each other. (BTW, in case the person in question ever reads this, I hope you know that I'm totally not mad at you about this. I was just frustrated by the whole situation I sort of found myself in. Mistakes/misunderstandings happen and its all good. Not like I haven't made a bajillion mistakes based on a misunderstanding.)

However, at that point my kids had sat through a 1/2 hour train ride and another over a half an hour wait. Then about a 15 minute wait in line. Then, we decided to head for the train ride. You have to buy tickets at the front, which is dumb, because then if you change your mind you've already paid. So, I wouldn't have waited in this train line if I were on my own. (Not that I said anything, so again, no blame except on myself here). Anyway, since I couldn't see, I had NO FREAKING IDEA how ungodly awful long this line was. I kept thinking we were at the end of it and just steps away from the train and then we would turn onto a whole 'nother subsection of line. It just went on and on. So, in addition to the kids' already hour and a half long wait to do something fun, We must have waited for the train for at least another hour. My kids were miserable at this point and it was just the point of no return for them. I was letting them in and out of the stroller and then they would want to be carried and my arms were aching and then Naim would throw a shit fit every time the line went away from the train and it was just a pain and not fun.

Naim getting impatient in the train line. He sucks his finger while holding on to the other arm when he's upset. He's always done this. It's kinda weird.

Then, after the train ride, I got lost. We had parked our strollers in this designated space and when we got off, she went that way and I must have missed the turn and just followed the crowd out. So, with two kids in tow, I had to find my way back IN the train area. This is where I knew I had seriously fucked up and the situation was out of my control. I had NO CLUE where I was or where I needed to be. All I could see was a mess of disorienting lights. I couldn't even see people to ask for help. I asked a few passersby if they knew how I could get back to the stroller area and they didn't know short of going through the entire train line again. Thankfully, the kids were being good and dutifully holding on to each of my hands, but I kept thinking, "Kids? As you trustingly follow your mother, you have no idea how much she is fucking up on the job right now." I was actually using them as my 'guide dogs' to watch out for steps and stuff.

I knew I needed to find someone who worked there who could get me through, but it was too dark to see who worked there. So, I asked 'The Next Person Who Walked By' to help me find someone who worked there. She had trouble as well, but finally we found someone who was holding those lights that airport people use to direct the plane with, you know? And he basically cut me through the entire train line and finally found my friend and the strollers.

An aside: I can't believe sometimes how nice some people are compared to how snotty others are. The person who helped me find the employee, she had her own kids in tow and was totally wonderful about stopping everything to run around and figure this out with me, a total stranger. Then, when I walked with my two little kids through the line with an employee, people were snotting at me not to cut in line. Even when I told them I was just passing through the line, not getting in line, someone said, "Why does she get special treatment?".

After that, things got a bit better. We walked around the zoo and it was kind of a neat atmosphere with all the lights. We spent some time watching a brass band that was playing Christmas Carols. Naim really liked that. I was fascinated watching my friend and her daughter together. Her daughter is just a month or two older than mine, and she would so dutifully follow right behind her mother while her mother walked anywhere from two to six or eight feet in front of her. She just followed along like a little puppy dog. I think Naim could do that, but still I would be afraid in a crowd like that that people would get in between us and we'd get separated and I would never be able to find him. I need contact. And Aaron? Aaron would be gone forever if I let him go like that. He is a wanderer. If he gets more than four to six feet away from me in the dark like that with such loud noises, I'm done for.

Better times for Naim. Listening to music.

So, I had the double umbrella stroller, and I always kept one in the stroller while the other had to "help me push." And even this was tough. The stroller is wide and keeps running over people's feet and can't fit anywhere narrow. The whole night was an effort of intense concentration and alertness on my part. Exhausting. I was a bore, I had to work so hard on just keeping our shit together. This was a new friend and she was a rookie at being with me. I'm sure she'll never want to go anywhere with us again.

And the whole night I kept saying to myself, "I should listen to Emmie. She's SO right about the harnesses. This would be so much easier with harnesses. I should listen to Emmie." Emmie has used those cute little animal backpack harnesses with her twin boys. And has made really insightful comments about how kid harnesses have such a stigma and are looked down upon, yet everyone shoves their kids in a stroller for the same purpose, to keep easy control of their kids. And yet, aren't strollers (at toddler age, I'm not talking infants here) so much more confining than harnesses? At least with harnesses they could walk around some and explore and get some exercise. The other thing is, they don't have to use them. You can have the kids wearing the backpacks and walking with you, and just take out the 'leash' part of the harness if needed. Whereas if you choose a stroller, you're pretty much stuck with it and at least one hand occupied all the time. In the end, to not do something that makes perfectly good sense and will work for you and keep your kids safer while still allowing them some freedom just because you are worried about what other people will think is just stupid. (As if, with all the other reasons we'll get stared at, harness stares will be such a big deal.)

And lo and behold, a Christmas Miracle! I get home and waiting for me is an email from Emmie offering to send me their harnesses that they aren't using anymore. Yea! Emmie!

Naim on a hippo statue while Aaron stands by. I didn't get really any good pictures at zoo lights. Too busy getting my ass lost.

Chapter 2: The Weekend

For the past several weeks/months, I have had significant trouble sleeping, even though I am exhausted all. the. time. I actually can fall asleep really easily, but then I wake up anywhere from 45 minutes to 2 hours later and then I am up, anxiety ridden, till 5 am or even just never go back to bed. Then I'm so tired the next day that I can't get anything except the essentials done. I've tried limiting my caffeine, not watching TV before bed, thought it might be my 30 year old mattress I am using now and am looking in to replacing it. Then, on days when I go over to D's to work, I've been doing the bare necessities over there and then collapsing on the couch in a deep sleep while he watches the kids.

Finally, on a terrible Saturday night with no sleep at 7 in the morning on one of those days when I probably have had 5 or 6 hours of sleep in the last 72 hours, it occurred to me. This all started when the kids got to big boy beds and Aaron started destroying everything. (A condition which still comes and goes, it improved some before we had another setback). They haven't been really taking naps, either. The problem is that I don't feel like I am EVER off duty. Naim doesn't like me to go to sleep and turn off all the lights until he is asleep at night, or he starts throwing things around. Then Aaron starts throwing things around in the morning if he gets up before me. They never sleep for naps anymore. The place is pretty childproof but then I always fear those little things like what if they knock over a bookcase and kill themselves. They have already destroyed a lamp in their room. They knocked off the light bulb and it shattered to pieces. What if they electrocute themselves? What if they just simply pull all of the toilet paper out and TP my house with it? Its not the end of the world, no. But it kind of is when there are messes to clean up all the time. I spend my life cleaning these messes instead of being able to do anything fun with them. One more big mess can send me over the edge.

It is a cyclical problem where I know that their schedule needs adjusting, we need some new routines, they need some more outings and stimulation. Aaron especially needs more stimulation right now than it seems I can give him. I've been looking into preschools but many are too expensive or have a "3 by September" rule so I have to wait until next fall. I need a break. I can't get one. I don't sleep and am tired all the time, which makes me less able to find stimulating things for them to do and then they get bored and start destroying things again. And I'm never off duty. When I wake up at night, I usually think I awoke because something has happened or they need me. Or did I remember to put the locks on the closet doors? I better check. Or I need to go check and see if they both ended up asleep in their beds instead of (really!) Aaron falling asleep on top of the bookcase. I'm never done, I can never relax. Naim is a dream child mostly. If it was just him, or even two of him, I think I'd be okay. But Aaron, as it turns out, is a--shall we say--"spirited child." He is a challenge and I am not meeting his needs lately.

So over the weekend, my body just collapsed into flu and exhaustion and depression. I have not had a break from the kids (for more than 3 or 4 hours, which is rare in itself) for over three years. They have not ever had even one day apart from me or I from them. Its not right. I'm not sure what to do about it. You can say "get a babysitter" but it isn't so easy. All my affordable babysitting attempts have fallen through for various reasons. Right now, I am looking at possibly hiring a young man from my church who works in the nursery with the boys and they like him. The only issue is that he has (high functioning) autism. I don't think I could leave the house with him there. He still may be a great help if I can get some other work done or rest. Or if he can perhaps help with some of the housework kind of stuff (which I'm not sure about yet.) He also doesn't drive, so we'd have to work out transportation. I'm very interested in giving him a go, but I'm not sure how well it will work, or if it will work at all. But he's a nice kid and I'm thinking I can hire him for minimum, so we'll see.

But what this has to do with the weekend is that three times, D has come over and spent the day with the kids so I could rest. It was the only way I was not going to lose my ever-loving mind and even attempt to have some kind of Christmas for the kids. He has been a bit sick with a post-operative infection from his pump surgery. And his incision is a bit open now so the infection can drain out and he has to be careful. So it was with much guilt that I had him come over, but if he hadn't...I swear I was headed for hospitalization or something. I was getting so sick and tired that I couldn't think straight and nothing made sense that came out of my mouth. Just the very thought of my dad coming in January and bringing that dog that I will have to manage as well and clean up after was sending me right over the edge into middle of the night terrors.

Things are better, I have been catching up on sleep. But the problems remain. At least now I have a clearer head and can start to figure stuff out. I need to look at schedule. I need to look for regular outings that occur pretty frequently and will stimulate and wear Aaron out. I need to look at some more baby proofing (at this point, it is kid proofing and involves heavy duty locks, rather than those pansy-ass baby proofing products that he laughs in the face of) so that I can sleep and feel like he is at least safe somewhere. I need to pursue a regular babysitter, if not this kid then something else.

Sometimes it takes you going nuts to realize that there is a serious problem that needs serious action to be dealt with. So that was what this weekend was all about. I'll get there, but it is going to take some serious strategy.

Chapter 3: Christmas Eve

The only thing on the agenda for Christmas Eve was the church service, which I always found relaxing in previous years. The kids have done well the last few years, and I tried to set up the day so this year they would do well, too. I tried to make sure they were well rested but also a bit worn out, well fed but not needing to go to the bathroom for an hour, etc.

But! It was not to be. They seemed fine all day but when we got there, they wouldn't shut up so we went back to the 'cry room.' Our cry room actually is a little play room with windows and a speaker with the service piped in. Naim was fine after a while and I sent him out to sit with his dad. Aaron, on the other hand, won the contest for the Most Obnoxious Kid in the Room.

There were 3 or 4 other kids who ended up back there. Every time a kid would come in, Aaron would say,"I don't like him! I don't want to play with him! Go Away!"

Big fat roll eyes slam head into brick wall emoticon here.

Now, here is where again, I will never judge another mom again and I'm ashamed that I used to do this. One experience with a kid does not a bad kid make. Aaron is usually a pretty social kid who likes to play with other kids and can be very polite about sharing and trading and taking turns. But on this night, he was a brat. And he got a time out. And we struggled through the service and had a struggle to clean up all of our toys afterwords. We were going to go downstairs for their little social thing and they had the accessible door locked again (happens less and less these days, but still occasionally happens.) At this point, I was worn out and the thought of dragging my kids  in the cold around the building and through two sets of staircases to go around and unlock the door for D was more than I could take, so I just wanted to go home. Which made Aaron scream bloody murder, because he wanted to go downstairs and socialize now, of course. Now he wanted to play with the other kids. So that was relaxing Christmas Eve at the church.

I put the kids to bed so D and I could have our steak dinner in peace, and that was nice. And then I sent him home so I could finish up all the present wrapping and stuff I still hadn't gotten done.

Chapter 4: Christmas

Despite all the crabbiness and all the--well--Aaron, Christmas actually turned out pretty good. I kept the kids upstairs and fed them breakfast up there until D and his dad got here at around ten. I had the train set sitting out in the living room and I carried Aaron to the bathroom and he caught a peak of it. But it was funny. He was all, "Gasp! A surprise! (sign for surprise) I saw a surprise! (sign)" I told him to whisper so Naim wouldn't hear about the surprise, so then he started signing everything while whispering. "Gasp! A train surprise? A present? For ME?"

The Xmas morning beeline. I don't know what that face I'm making is all about.

When I took them downstairs, they made a beeline for the train set. They were pretty excited and crashed the track and bridges almost immediately, which I knew was going to happen. That track assembly is going to take a bit of practice for them, but they'll get it. Luckily, we had other presents at the ready to distract them from track frustrations. We spent the morning happily opening presents. It went quicker this year than last year. Because this year they wanted "more presents!" while last year they would play with something a while until we nudged them along to open the next one. They are starting to get this whole present thing. Yea! Consumerism!

Aaron and Naim with the train set before the hurricane hit it and left the Island of Sodor in ruins; it's minority inhabinants to be left for dead by our classist regime.

Oh! Before I forget. On cue during the present unwrapping, as if in a oversentimentalized Hallmark Channel Christmas Special, another Christmas Miracle! It started to snow! Supposedly, it hasn't snowed here on Christmas in over 56 years! (Didn't stay on the ground, though. but was pretty to watch.)

Then we went to the Christmas Dinner thing at my church. And this time the door was unlocked. It was really nice. There were more people there than I thought would be, and they had all the tables set up with candles and china and there was wine and lots and lots of food. They set up a little kid area with a kid table and chairs and some toys and markers and paper. The kids got a gift bag with candy and a small toy vehicle in it. There was another boy about their age and this time Aaron played nicely with him almost the whole time. Aaron was pretty good except that he went to the dessert table and took just one bite out of four different pieces of fudge and then put them back. Luckily, people just laughed about it. Naim stuck with his dad mostly. Usually during potluck kind of things all I do is work because I have to get food, drinks, silverware,etc. for four people by myself while watching the rugrats at the same time. By the time I'm started eating, everyone else is done. There was some of that here, too, of course, but people actually ran and fetched things for me, like a drink for Naim or a fork or dessert for the kids. When you NEVER get waited on, I mean like EVER. And you are always the one who has to get up during a meal and fetch the juice, the butter, the seconds, the whatever, then you have to clean up afterwords as well--it is so nice when someone does something simple like just gets the kids some juice that it practically makes me want to cry. I almost don't know what to do with myself. Its silly.

When I go to social functions with kids now, time warps into something I call "Toddler Time." Even if I've had a nice time and the kids were relatively well-behaved, I think I have spent hours and hours somewhere and when I leave and look at the clock, its only been like two hours and I am shocked. This is what happened here. We were the first to leave, and I  had the "get the kids to bed" excuse to use. But I thought we had been there at least 3 or 4 hours. Turns out it was only two. Well, that was enough. I'd go again next year. I figure each year these things are going to get easier and easier.

Appendix: The Loot

For both kids:

• Train set (mom)
• Set of a bunch of space shuttles and rockets (dad)
• (btw, remember the plastic hunk of kitchen junk? After dragging all the peices out twice to put it together and failing. I gave up. It is pissing me off and it is going to Freecycle.)

Naim:

• small stuffed kitty cat that meows and moves and blinks (grampa b.)
• Knit hat (grampa B.)
• matchbox airplane
• creepy feeling rubber dragon and dinosaur
• Melissa and Doug farm jigsaw puzzle
• Animal planet safari animal playset
• Max and Ruby book (Julie)
• School house puzzle (Julie)
• Fisher Price turtle game
• 2 finger puppets
• Little school bus (from church)
• Candy
• Train Christmas Ornament
• Gift certificates (the SILs)

Naim discovering the wonders of "More Presents!"

Aaron:

• little stuffed dog that barks, etc. (grampa b.)
• knit hat (grampa b.)
• matchbox airplane
• Creepy dinosaur and dragon
• Little people helicopter
• Melissa and Doug train puzzle
• Roger the Snake book (Julie)
• Barney Puzzle (Julie)
• Fisher Price Oreo game
• 2 finger puppets
• little ambulance car (from church)
• candy
• Volkswagen bug Christmas ornament
• gift certificates (the SILs)

D helping Aaron unwrap. This is Scrooge of me, but I f*ing hate that Santa hat D wears every year. Which is probably why he wears it.

D:

• sweater (parents)
• wheelchair reflector light (parents)
• security video camera (his B/SIL) We were kind of dumbfounded by this one. We both said, Oooh! a good gift! We have been thinking for a long time about how to give D access to the kids room upstairs, because they are starting to want him to go up there to show him things. We thought about hooking up video somehow. So this is (I think) what that is in mind for. Although I think he is going to exchange it for one that can work on his computer instead of the TV, it is still a thoughtful gift.
• RAM (me) Isn't this romantic? Isn't it special? Over the weekend I finally confessed to him that I suck. I didn't get him anything. I said to pick out something he wants and I will get it for him...and he picked RAM for his computer. I said email me the exact thing you want and where to get it and I will order it, so that's what I did.
• His favorite oatmeal choc chip cookies (me and the kids.)

Me:

• Kitchen timer (D) This is a joke. I've somehow managed to break, like, 4 of them. I use them for turn taking for the kids or getting them to pick up their mess in a certain amount of time or occasionally for time outs.
• Chocolate (D)
• iPod Shuffle (D) This is a good little iPod for me. I needed one that works without a screen which I can't see.

*If you are wondering about gifts from my family, I have asked them to contribute to my "trip back to the Midwest" fund. My fake grandmother is 85 years old, and I am determined to try to make it back with the kids this spring/summer. It is expensive to fly for the three of us!

Early Morning Time Waster

I blame AmFam for sending me on a time-wasting binge this morning. For both she and I, I think that whole nonbiological aspect in our families drew us in. Kinda funny. I did not spend a long time picking good pictures of all of us, maybe later I will go back and see if I can find better ones and try again. But this technology is kinda cool, though...such as it is.

I think what is really proven here, and what everyone tells me, is that neither child looks much like either of us. My sister thinks they were switched at the hospital. (Although D and I recognize the kids as the actual screaming babies that were pulled out of my uterus in the OR.) I think Aaron kind of looks like my dad sometimes, and my sister's baby pictures other times. Naim looks somewhat like his half (donor) brother, and looks more Russian, yet this says he looks more like me than Aaron. Aaron and D have a very similar coloring, they both have that Eastern European olive-ish tone, whereas Naim and I are both white, white, white. I do believe Naim is the whitest kid in America.

All this is to say that we have two kids that look not much like either of us, and neither of us could give a rats ass about that. Besides the novelty factor, I still don't get why some people are so adamantly connected through biology exclusively and seem to value those ties so much more than chosen ties. (i.e. the whole, "I could never love an adopted child as much as a biological one." WTF is UP with that?)

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Am suffering a HUGE, MASSIVE, MEGALITHIC, GINORMOUS Sleep Debt That Renders Me Unable to Form Paragraphs

...but I can manage miscellaneous pictures:

One of the reasons for my lack of sleep. Naim in his new bed. Naim has decided he doesn't need naps and Aaron has decided to entertain himself by poking me while I sleep at all hours.

Aaron faking sleep.

Naim humoring me by pretending he is going to stay in bed all night.

I found these school lunch trays on sale for $3 and I got nostalgic for those good ole' perfectly dome shaped public school mashed potatoes. The kids think they're the greatest thing since sippy cups.

The next several pics are from a little day trip we took to a state park on the other side of town. The kids are so into PICNIC! PICNIC! that everytime they see a picnic table they sit down and demand food. Luckily, today I was prepared.

One challenge we have is finding accessible trails that we all can go on. Doesn't always work out. Here, Naim and D take the (very empty) road while Aaron and I go searching for trails. (Ah! But one of the advantages of park visits via wheelchair? See how I'm using him as my pack mule?)

Found a semi accessible trail. Naim has his walking stick while Aaron forges ahead at Aaron speed.

Aaron forgets that trees come in sizes larger than suburban tract housing 15 feet.

Naim checking out the tree with Aaron. In these pics they look like typical Portland teenage boys. Oversized muted colored layered slouchiness.

Aaron is majorly pissed off in this picture. He broke the "Stay together" rule and ran off and didn't listen to the "stop" rule so he got benched for a bit.

Naim made friends with this very brave squirrel. It was kind of cool because on Tuesday we spent some time reading about and talking about squirrels.

Naim never got to actually touch the squirrel but it did eat right out of his hands.

Naim sitting around waiting for us all to load up back into the car.

Bye-Bye, Squirrel!!! (X 100)

(Please Indulge My) Ode To Scrapper

Our 4 year-old cat, Scrapper, died tonight. She has been in "hospice" for the past 6 or so weeks due to a mysterious illness that was most likely some form of lymphatic cancer. I really, really liked Scrapper. She was such a funny cat.

Scrapper. (She is white on her underside. Her back and sides had this mysterious swirly tan tortoise shell over black and grey specks. When she put her arms and legs together, the patterns matched and continued on the other side. Her left eye was cloudy, but fairly normal looking. Her right eye was always closed more and did not look like it had a normal pupil.)

In 2003, I was home to Kansas for a visit with my terminally ill mother when a neighbor came to the door. They knew that we had a cat in the house (my sister's cat) and wondered if she had had a litter of kittens (no HE hadn't) because there was a litter up in the crawl space under their house. My sister and I and another neighbor went over to see this cute litter of kittens. Several of which had closed or deformed and gunky eyes. Seriously, when you are home stuck in the house of your dying mother...even when you are trying to make the best of it...everything feels like dread. Finding the litter of kittens was just the only bright point of the visit. They brought me a little dose of happiness.

Me and Scrap getting reacquainted on her first night in Oregon.

I had to leave, and my sister and the neighbor, Cindy, launched into a project of saving all these cats, and controlling the feral cat population by trapping the ferals, spaying/neutering and vaccinating them, and then releasing them. The mothers who had kittens were trapped and stayed on the back screen porch of Cindy's house until the litters could be weaned and the kittens could be adopted out. Cindy had three litters of kittens and their accompanying mama cats on her porch for months.

Scrapper getting lovey-doveys from Kai.

I went back to Kansas a few more times that year. My mother died and I went back after her death for three weeks. The only thing even remotely good about that time was that I got to go over to Cindy's back porch and visit the cats. Scrapper was an unusual looking cat. She was sort of tortoise shell swirly and she had one deformed eye. Cindy and my sister had really gone the extra mile for Scrapper and a couple of other sickly kittens. She had ring worm and lost all of her hair at some point. She had feline respiratory disease, and she had herpes of the eye. Scrapper was so good natured during all of her treatments that Cindy gave her the name "Scrapper."

Scrappers life overlapped my guide dog, Mara's life by a few months. They got along, but were not best friends.

In February of the next year, all of the cats were gone off the back porch except for Scrapper and one other cat that Cindy was keeping for herself. Scrapper came to Oregon. My father brought her out here on a plane. But he had put her in the dog, Abbey's, soft carry-on bag. Big mistake. When my dad walked in to our apartment with Scrapper, the carry-on had silver duct tape wrapped all around it where Scrapper had ripped into it. Scrapper's head was sticking out of a hole in the bag and my dad had wrapped his coat around it trying to keep her contained. He had bandages all over his hands that the flight attendants had put on all the scratches she inflicted on him. It was rather hilarious. My dad still hasn't completely recovered from that flight.

Scrapper and Aaron copying each other, spread eagle on the floor.

Scrapper was a little goofy. A little off. My sister strongly suspects that her father was also her grandfather. So there was a bit of in breading going on. And part of it was her poor eyesight. She would just get into these hilarious predicaments. She would jump up on the TV and promptly walk right off the back of it. Then she would be stuck down behind the TV. She could have just walked out the side, but she couldn't figure that out. She would meow until we came to save her.

Scrapper sharing the gymini with the babies.

Sometimes our other cat, Kai would come save her. Kai would help her out a lot. If Scrapper got stuck somewhere and meowed, sometimes D couldn't reach her and he would send Kai back to get her. Kai would go back and poke on her a bit and lead her out of wherever she was stuck.

When we moved into separate households, we tried to separate Scrapper and Kai. D took Kai and I took Scrapper. Scrapper was having none of that. She had such trouble at my house without Kai to give her the confidence she needed to get around. Or maybe it was just kitty companionship. In any case, I was on bed-rest and weeks away from delivery, so we all moved to D's house. After the kids were born, D had gotten so attached to her, and I was overwhelmed with kid duty, that she and Kai stayed at his place (except during the long hospitalizations, in which they both came to live with us.)

I remember when I first saw the cats after having the twins, the cats looked HUGE. Twelve pounds of cat was heavy after being used to five pound babies.

Kai could care less about my kids, but Scrapper always engaged with them. And also put up with a fair share of abuse. She liked to sit in their stroller. Sometimes she would let them push her around the living room in it. She would also ride around in D's wheelchair with him. She wouldn't walk to the kitchen herself to eat, she would jump on D and meow until he gave her taxi service there and dropped her off.

D has a wheelchair that he can tilt back and recline a bit in the seat. The whole seat tilts, so he is still in the 90-90 sitting position, but tilted. She would meow for him to tilt back his chair so she could sit in the crook of his lap and lay on his chest. She liked to sleep on your chest at night, too.

The date on this pic is 12/6/04. A day before my kids were born. Scrap kept me company on those long, anxiety ridden bedrest days when I couldn't see.

We gave her pain medication this past month, but she did not seem to be or show that she was in much pain. She was still her same happy self. Yesterday, she suddenly stopped eating and drinking and hid under D's bed for over 24 hours. We knew she was telling us that she was done. She had a way of letting you know what she wanted in no uncertain terms. We had thought of euthanizing her before now because we knew she was terminal, but she was so damned happy and content it didn't seem right. And when she was done being happy and content, she made her statement. So, we did take her to have her euthanized tonight. Very graciously, D's father sat with the (sleeping) kids while we took her in late this evening. And she was pretty calm and died right in D's lap where she belonged.

D holding Scrapper on his lap. This was taken a few days before she died. She went from 12 pounds to six pounds in a few weeks.

I think to myself that this cat should have been dead about a hundred times over-she would have never survived feral catdom with her 'disabilities' and would have been a tough cat to put up for adoption at a shelter- but my sister and Cindy and D and I (and even my dad) all committed to her because she was such a friendly, good-natured cat. So, she had four good years that she wouldn't have had otherwise. She had a good life, and I will miss her.

Scrap and I fought over who gets to use the computer chair a lot.

About Us

In light of the comments from the last post, and my thinking about the direction this blog has taken as compared to my earlier one, and also about how much D and I have gone through in the last few years, I thought I'd talk a little bit about my relationship with D. The good, the bad, and the incredible thing we are trying to pull off here.

There are very few people on the planet that I would just write off as being a one dimensional asshole. People have strengths and weaknesses and sometimes these attributes are not compatible with you but may be totally complimentary to someone else. Also, in relationships, people change and have growing pains. D and I are having growing pains.

Here is what I'm struggling with in regards to D. D is extremely disorganized. He has trouble prioritizing and managing his life. He sometimes is unmotivated and cannot come up with a coherent plan of action when trouble arises. He is not very efficient. He has trouble taking charge and committing; taking responsibility for his life. These things are not new. I knew them all along. And they've gotten better and then gotten worse and vice versa. The problem is, as Twisty would say, when you have kids, the gloves come off. I have high standards. What used to pass for me because it was his life and it didn't affect mine that much, now affects me and the kids in way that D does not fully comprehend.

All of these things are either caused by or exacerbated by his disability. First of all, D had way less expectations and responsibility put upon him as a child. When I was working summers and basically taking care of all my own needs except room and board in high school, D was going to summer camps and having his mom do his laundry for him. Then, what happened to him happened to a lot of people who become disabled around 16-18 years old. He missed out on that last stage of development into independence. I swear I should write a dissertation on this, because I've seen this several times. It usually occurs in males more than females. That 16-18 age is about the worst time in your life to get a sudden disability. Every guy I've known that this has happened to got stuck in some way or another and it kind of stunts their maturity in a way. Get disabled earlier and everyone has a chance to get used to it and the different you and watch how you can still develop into an independent adult. Get disabled later in adulthood, and you've already had a chance to establish your own identity and learned how to live on your own and be responsible for your own needs. Guys who get disabled right when they are about to go off into the adult world and then get slammed back into infancy...psychologists should study it because it does something to their development. They get stuck in high school mode with their high school friends. Or they can never get past what they lost, what they were on the cusp of getting. Or they never completely get the confidence to manage their own lives. Its not like you can't get over it, but I've just seen a lot of guys struggle with this. There is something about D that, well, he just doesn't have the life skills and experience to take control of things. He's hardly ever been in the workforce, he has hardly ever lived independently; it is just something that never fully developed in him.

Since I didn't know him before he was disabled, I'm not sure how much his poor management and disorganization was already there before and how much is post disability. The other issue that I struggle with is how D's prescription drug use interferes with his ability to function. D is on enough narcotics and opioids to pretty much knock out an elephant. And he's been on them for years. It is hard for me to know what in his personality he has control over and what is just gone because of the drug use. He is not abusing drugs, they are all prescription and he does make an effort to minimize and control the amount he takes, but over the years, they have affected his brain. It isn't that he is cognitively disabled exactly, he is still very intelligent. But the drugs have dulled and slowed his thought patterns and emotions and ability to solve problems. It is better sometimes and worse other times, but the drugs have definitely impacted who he is. It is very hard for me to define and deal with this.

Now, mix that in with what Kathryn terms Medical Jujitsu. Medical (and I'll add 'Social Services') Jujitsu is the red tape and amount of work you have to do if you have complex health problems just to stay alive. The crap he has to manage just to get the medical care and services he needs is just astronomically ginormous and ridiculous. It is a full-time job. It is a job that makes no sense, is terribly inefficient, and is full of wrong turns and dead ends. People who do not have to deal with social services and medical services often assume it is like dealing with any consumer issue. As if you are a customer and people want to serve you and get your business. As if you can just call up and in one phone call, get your new wheelchair or change medications or arrange for nursing care. These people do not care about you, they are overworked, they are uninformed, and they do not really want your business. (I know there are individuals in the system who are caring and knowledgeable, but the over all system does not support the success of people like D.)

So, when I say that he told me that his father couldn't be his attendant because he is a family member, I am not saying that he is lying. I would not be surprised if someone,  somewhere along the way, told him that. What I was more mad about was that it took him YEARS to get the answer. And that he went on for months and months without even trying to do anything about it. These things frustrate me. He is not good about keeping on people to get things done, he tends to just let things go. I think, what has happened with this attendant issue, more than anything else, is that with his dad and I there and willing to take up the slack, it was one thing he could drop off the list of shit he has to do. As much as I understand this, I have been angry that just because it wasn't a priority for HIM, it was a priority for ME and possibly his father. And you can let things go for a few months maybe, but this problem has been going on for so many years that it has deeply impacted my life, his father's life, and probably some others. Including himself.

He has trouble realizing that--what is the expression? An ounce of prevention is equal to a pound of cure? He lives in that state of urgency all the time, when a bit of up front work would help him in the long run. Just one small example: He has to get scrips filled all the time at a drugstore that is a few miles away. (It was close to where we used to live.) So, every few days, either he or his father or I have to run up there and get his scrips. There is a pharmacy within walking distance that also has a drive through and also delivers that he could use. He could save all of us a ton of time and effort if he changed drugstores. But initially, to get that set up would take a bit of doing. He would have to get all of his insurance together, get all of his scrips together and transfer others and go up and establish himself at this pharmacy. But he never has time because he is too busy having to run up at the last minute to the other pharmacy. Can I help him with this? Sure! If he would help me! I would have to go through all of his stuff to find everything you need, and without his help, this is damned near impossible.

Many times, I get frustrated as his attendant because he does not utilize me (or his other attendants) very well. I chop out big blocks of time to go over there and do whatever he needs me to do. I see things that need to be done all over the place. But he never wants to do them. Now, of course, I go ahead and do the no brainer stuff like laundry and housework without needing him, but other things I offer to do require his participation. He is not in the mood or he is too tired or whatever. So many times, he will take the kids to the computer and play games the whole time and not do anything useful with me when I'm there to help him. Drives me up a tree. If I'm there, I want to work. I don't want to waste my life away waiting for him to decide when he is ready to do something. But, as an attendant, I can't MAKE him utilize me the way I want him to. He has free will. If he wants to have an apartment so disorganized that he can't find his insurance cards or whatever, I can't put a gun to his head and make him let me organize things. (I do organize things a bit, but some of the stuff he has is just stacks of computer software inventory or whatever that I have no idea what to do with.) So, mostly, I just have to go his speed when I'm over there, which to me feels very inefficient and like a waste of my time.

So, all that is to say, that he and I are probably not a good match attendant-wise, but that doesn't mean that he is a lying sack of shit. What he does do, and this is both a good thing and a bad thing, is he has this ability to make the person he's with think that he agrees with everything they say. And then turn around and make someone else think he agrees to the exact opposite. It is good in that he has a lot of tact and diplomacy skills. He puts people at ease. When I have a conflict with the phone company or a landlord or something like that, I'll put D on the case first. Because his diplomacy skills are far above mine. He can be nice and usually get a lot of things done with his "spoon full of sugar." I am "the medicine that goes down" in that I don't have patience for sweet talking idiots into agreeing with me. So, in reverse, when he has not been able to deal with someone like the landlord, he will send me in when he needs someone who is tough and straightforward and to the point to get the job done. So, this is an area where sometimes we compliment each other.

Over the years, I've learned ways to probe him to get to what he really thinks rather than just telling me what I want to hear. It has a lot to do with asking point-blank, closed ended questions. Triangulating my data and cross-examining him. Hey, it works, so don't knock it. I do not want him to tell me what I want to hear, I want to know the truth, see it how he sees it, and to know his opinion. Now most of the time this works, but sometimes not, and then you get a situation where I go along believing for months that he thinks one thing and then I find out differently. To me, this does feel like a lie. And I've told him that. It is not a lie in the traditional sense, but it is a dishonesty to me. So, he knows that and does it less often. Although I still see that he does it with other people all the time. I'm not going to go along and waste my energy trying to control that. He's on his own with other people. So, when you get me and 'other people' together, sometimes you hear different versions of the same story. I'll go back later and corner him on it. This is probably what happened in the dad and the tax/income situation. Not an outright lie, just a different version of events told to me to put me off.

No I don't like it. But he has faults and god knows I have faults. I am impatient, I am quick tempered, and I am a social klutz. He deals with me and I deal with him. And really, in many situations we compliment each other, but in the attendant situation, we clash. Which is why I should not be his main attendant. He needs family, like me, to do the emergency 2am things, but he also needs people to work for him that JUST work for him and who he can boss around without the emotional baggage. The power differential between a disabled person and a less disabled caregiver is real and I make a conscious effort to not abuse this imbalance. And that sometimes means that I have to sit back and watch him lead a disorganized life and make his own choices and handle things his own way, even if it is not how I would handle them.

Our relationship has been in a real tough spot since the whole foot amputation and his mother's breaking off the relationship with me. I've talked about all that before, so I won't relive it...I do that enough already. But I was thinking about my old blog and this one, and how this one I am less proud of because it has a lot of bitching, even though this is probably one of the happier times in my life in a lot of ways. The blog gets the spillover crud in my brain sometimes, which is unfortunate. I'm a way better writer than many of these post show. But also in thinking back to my old blog, I think about how we were completely different people then.

When D and I met 13 years ago, I was much less disabled than I am now and so was he. We both were on a career track. He was in engineering school and I was in grad school and working at a major university. We had a social life, we had lots of friends we hung out with. We took trips together and hang out at night spots and whatever. We were disabled people who were "making it." We were all cool and shit. We were "passing."

And I thought at the time that this was because we were such great people at handling our disabilities. And part of it was, and another part of it is that we just weren't all that disabled, comparatively speaking. Functionally, things were just a ton easier back then. Around 2001-2002, both of us, over a period of time, became significantly more unhealthy and we both lost a lot of functioning.

And, okay. So we were just going to adjust. And it would all be temporary. Even if we didn't gain our functioning back, we would adapt and go on. He quit school, I lost my job(s). Okay, but it is still all temporary. We will get back on our feet. And I sort of had. I would not have gone on with having children if I didn't think I was adapted enough and was ready. And he sort of did, with much encouragement from me telling him that waiting for inspiration to strike is a waste of time he doesn't have and that he just needs to DO IT ANYWAY, he went back to school.

And I continued to shoot forward with my goals, having kids, trying to come up with a home business that would allow me to stay insured, moving out of an apartment, relearning how to use the computer, etc. And I thought he did, too. He was so responsible and so committed and so supportive during my pregnancy, that I thought I was seeing him come with me and forge ahead no matter what our bodies did to us.

But a lot of bad things happened while we were struggling to go on with life and our goals. The most surprising thing that happened to both of us is that we felt we were basically abandoned. Our support system fell apart before our eyes and, for us, it seemed to come out of nowhere. I'm all for people setting boundries with what they can and are willing to help with, but it wasn't that. People just disappeared from our lives. Some of it was no one's fault, like my mother dying. Some of it was me waking up to some of the realities of my family and finding out what they really thought of disabled people and that I might not be safe there should I become more significantly disabled. Some of it was people at work who were no longer interested in me if I was a stay at home mom. I was only a good little disabled example if I was an employed little disabled example. (2/3 of my job at my previous employer seemed to be being a good little disabled prop.) And then members of D's family basically abandoned us. Even when he talks to some of them some of the time, it is still an abandonment issue for him as well. And for me, I lost a LOT of acquaintances who just couldn't deal with my hearing issues anymore. D lost a lot of acquaintances when he quit school and also when he became less and less able to get out and around.

And, of course, neither of us are perfect and we've both made mistakes, but we knew we didn't deserve this. We are basically good people. We are good to others. We try to treat others as we'd want to be treated. We try to respect others differences and choices. We try to be good friends. I think about all the help I have given to others, and how hard I've tried to be kind, and I think, what happened to karma? Why are people treating our disability stuff as personal faults of our personalities? Why did it bite us so hard in the ass at such a vulnerable time? I don't know the answer. But I do know that we did not deserve to be ditched by nearly everyone.

So, yeah. I'm bitter. And this blog reflects a lot of that. And I don't like that about myself. I don't like that about this blog. But, I think that since going to therapy about it was pretty much a logistical and financial impossibility, writing the blog has been good, cheap therapy. And this good cheap therapy has not only allowed me to make some great online friends, it has allowed me to focus on being a good parent during all of my non-blogging hours.

The bitterness has faded a lot over time. And the pains are not really all that sharp anymore. All the wonderful little moments with D and with our children has really also been great therapy. D and I have slowly settled in to our new reality and found ways to improve on our lives.

There are old connections that were abandoned and probably need to stay that way. There were abandoned connections that we are trying to salvage and rebuild, like with D's father and my father and sister. But mostly we are working on forging ahead. We are making new connections. Some of them are cherished online connections, or through church, or through activities with the children, or through the disabled community or even some of D's health care workers have become new friends. We are building from scratch, and having to carefully redefine for others who we are and what we can and can't do, which sometimes we don't even know for ourselves.

We are looking at new ways to do things to adjust to our disabilities. D i