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?)

<

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 is always fiddling with equipment and medications. I've almost entirely abandoned the telephone and am using i711 almost exclusively now, except for close friends and family. I've reached out to the CODA and deaf community for connections for me and the boys. D has reached out to a wheelchair user father. We look at recreation and socialization differently. Maybe we'll never go on a long driving vacation, but can we get away to something affordable and nature-y and accessible near us? What kind of activities can we get the kids in where we can participate and be accepted. (This is another big fat reason to homeschool. Homeschooling seems to trump some of our other issues and people find a kinship with us in that way.) All of these things are the easy things. We have these bodies and we just have to adapt and move on. Find our ordinary world.

Harder is the letting go of the past, letting go of the anger, and just enjoying remembering it for what it was. As social as I was in the mid-nineties, as easy as communication was back then, I was still just an insecure girl whose self-esteem was wrapped up in how attractive other guys found my body. Now, I'm such a stronger feminist and social justice advocate and yes, unfortunately for D, he is "My Nigel" no longer. So he changes and I change and it is much better to be smart and disabled in your 30's than giggly and insecure in your 20's.  Momhood is great, and I think D thinks that dadhood is pretty great as well. We are very lucky.

The disability awareness thing I was asked to do actually looks pretty cool. It is all about families. And they aren't separating us all out by race or sexual orientation or whatever, it is just all about different families. Adoption, single parent, same-sex, mixed race, step-families and divorce, etc. So, we have just been asked to talk about our family, along with other families, to kids. I still have to think about how and if I will present the donor issue. I actually think that I am going to present it, but I need to do some thinking about the language I'll use.

First crack at it:

My Family

I am lucky enough to have spent thirteen years with my best friend. And for a long time, I wanted to be a mother. And D wanted to be a father. And we needed some help. So the third special person in our family is "Sergei," our children's biological father. And, wow! Were we surprised when we had twins! And so were a lot of other people. Some people were angry at us and didn't think we should have kids. But we knew we would be good parents and we were so lucky because we had two beautiful boys, named Aaron and Naim. And through many hard times, and many times that were very hurtful when others didn't accept us or didn't try to understand what we were going through, we worked hard to work through it. And all of this work and love led to new experiences and opportunities and friendships and love that grew and grew and grew. And although we are a funny little family to watch --living in our separate houses and walking, rolling, and tapping back and forth between them--it is all home, and it is all love, and it is all exactly what a family is.

Another Post Wherein I Bitch and You All Die of Boredom

I know. I've been a bad blogger, lately.

Mostly because the past few weeks have been very busy. The good news is, I raised over $600 selling stuff. The bad news is, my kids have some kind of weird stomach virus that causes fever and mass amounts of diarrhea. Since we have a lack of furniture during this transitional time, I am sleeping with them and I have had more than one incidence where I wake up covered in baby poop. They are really irritable, too. I think part of it is because I'm changing a lot of stuff on them with selling the crib and other furniture and basically moving all diapering ops into the bathroom. Part of it is this mystery illness. They go back and forth between seeming fine and being really miserably ill. I'm at that point where I'm having to decide whether to actually take them to the doctor. This has been going on for four days now. If I do take them, I will pay $200 for him to say, "Plenty of fluids, and it will just work out on its own." If I don't take them, it will turn into something serious that requires an ER visit. I keep thinking they are getting better. Aaron actually hasn't had a fever in two days. Naim had a fever today, but his diarrhea is not as bad. I feel for them, but they are driving me batty. And sharing a bathroom with diapered toddlers with the runs is just about as fun and glamorous as it sounds.

And my dad is here for his summer two month visit. And he is driving me nuts. We usually have a bad first week. He has to get acclimated to how it is to be in this household. In Kansas, it is just him and my sister in a bigger house and my sister works all day and is out of town often. They basically co-exist separately. He also has more recreational stuff to do and contacts there. Here, this house is small and noisy and busy with a lot of people coming in and out and people with a lot of different needs that have to be met. Most of which are, quite frankly, more important than his needs. The kids need to be fed, D needs medical assistance, I need help hearing. My dad's need to sit on the couch with the TV on and the laptop on his lap without being bothered just doesn't quite stack up.

But the last couple of visits, he has been fine within a week, and we had a nice time. I have to give him the speech EVERY TIME HE COMES about how there are a lot of people in a small house and how we all have to cooperate and work together and how we are all equal in importance and no one is the boss and no one is better or more important than anyone else and I will NOT be bullied with his crap. Usually, this works. This visit, he is being much more stubborn. We have Abbey, my mom's dog, this time. Which always adds to the stress level because she is very undisciplined and he pays absolutely no attention to her nor makes any effort to manage her behavior. So basically, I either have to adopt her as my third twin or she poops, pees, and climbs on the table and eats everything and barks. She is not all that hard to take care of with a little effort on his part, but since I have to do it ALL, it gets on my nerves.

Also, his Arthur Murray dance instructor, some 26 year-old sweet thang that he had a crush on out here, quit since he's been gone, so he isn't out dancing and socializing as much as he used to. And then he's got someone of interest (I'm not sure that I would call it dating, yet) back in Kansas that he talks to on the phone a bit. So I don't know if that has anything to do with it. But he's being a total grumpy old man. And he's being a bully.

I have these conversations with him that sometimes make me stop in the middle of them and say to myself, "I can't believe I am in this conversation. I can't believe I have to spend mental and physical energy on this bullshit." Here are some examples:

About a week ago, he suddenly decided to buy all these glass beer mugs. Like a dozen. So he came home and threw out a bunch of my cups, just threw them in the trash. Not like mine were precious china or anything, but he was throwing some away that had specific purposes. Like some that go with my blender that you can just pop on the blender and make a shake and I use those all the time. I rescued those, but still. I have to watch everything he does when he gets a bug up his ass about something. So then he decides that the beer mugs aren't as big as he thought they were. They look like they hold a lot, but the glass is so thick they only hold about a cup or so. So he went out and bought a couple of gihugic YELLOW coffee mugs (to go along with the purple ones he already had.) Now, I am not ALLOWED to use the purple mugs, and in general I don't. But I didn't know there was a restriction on the new mugs. So he gets mad at me and I am like, So, how many coffee mugs do you need a day? You throw out all my cups and then I have to remember a whole new set of rules for the new cups? Um, I'm not wasting brain space on this.

Then, he says this to me: Okay, well first, some excruciatingly dull background. I can't drive. So I can't get to the store every other day like he does. So when I am here alone, I order groceries (or go with D) once a week. I plan exactly what we need and budget everything. I buy 2 gallons of whole milk for the kids. One gallon of skim for me, and also usually make some kind of juice for the kids to drink as well. That lasts us the whole week and takes the whole top shelf of the fridge. When he comes, he has to have his own everything. His own juice, his own pop, his own water bottle kept in the fridge all the time. We have a real fridge space problem. So, I have only been able to keep like one or two gallons of milk in there and no juice at all. He will occasionally buy the kids a gallon of milk, but that is because he uses their milk. He also eats each week, my crackers, my tortilla chips, my produce, and anything I cook for family meals, he usually eats, too. Leaving no leftovers for D to take home on the days I don't cook for him. So, I don't mind sharing and cooking for him. Fine by me. But you'd think he would reciprocate? I gave the kids some of "his" orange juice, and he actually said, "Those kids don't need to drink juice! They can't drink my juice anymore. What do they need juice for anyway? I have to have it. They don't." Um? No he isn't on a special diet or anything. And yes, there was still juice left for him to drink. Since there is not enough room for us to keep two of everything in the fridge, the logical and reasonable and mature thing to do is for us to share. And when it is gone--get more. He goes to the store like EVERY OTHER DAY. It isn't hard. I mean, this is just normal stuff that every normal person in America has figured out, no?

My apologies for the utter dullness of this. But here is another one:

The ongoing TV battle.

I will be the first to admit that I like to relax in front of the TV and rest my back for an hour or so after the kids go to bed. I also freely admit to using the TV as a babysitter. But I try to keep it under some kind of reasonable control. They get about a half hour mid day and a half hour before bed. They usually get commercial free kids shows that I have screened for at least some quality. Or they get signing time videos or my Boys Town Publishing videos where they read books in ASL. But I also cringe monthly at my cable bill and think quite often about kicking cable altogether. My dad's utter need for TV is one of the main things stopping me.

I hate Hate HATE the ugly ass monstrosity that sits as the focal point in my living room. It is a horrid huge TV. We have limited space, it is an eyesore, it is loud, and it pretty much shows the kids what is the most important thing to my dad. Not the kids toys, which are barely allowed. Not books, which there is hardly any room for, not even themselves, who my dad can't interact with for more than five minutes on his own without putting them in front of a TV program, it is TV. It is on even when there is an infomercial on and he is surfing the net.

I have laid down rules about this. No TV while eating at the table. No TV after six. No more than a half hour of kids programing during the day. But it takes effort to constantly reinforce this. We have DVR, he can record anything he wants to watch it later after the kids go to bed. But he just likes it to be on. Keeps him from having to do anything real, I guess?

So, I have a little TV in my room that is over 20 years old. And it is going out. This is the only TV I can see and put closed captioning on. It is the only TV I watch, and usually just an hour or so after the kids are in bed. My dad has a $3000 flat-screen in his room that he has never watched in the 3 years we've lived here. It also has a cable box that I pay like $5/month for. He has since said that he regrets buying it because he never uses it. He said my sister wanted it and he was going to ship it back to Kansas for her.

But here is the deal. In that Kansas house, they have like 6, count 'em, 6 TVs. My sister can see and watch every one of them. Maybe one of the TVs went out and thats why she wanted this one, I'm not sure. But she makes something like 80K a year and probably has about a quarter mil in savings and has almost no expenses. And I doubt she cares that it is a $3000 flat screen. She could easily go out and buy a new TV for a couple hundred bucks. Besides, the price of shipping that thing back there would be ridiculous. So, I tell him that I am going to sell my old TV at the garage sale and take that one and get rid of the cable expense for it. He does not object. I sell my TV for $10 bucks. I take that TV upstairs, I pack up the cable box for it with the intent to give it back to Dish network and save myself $5 a month.

All the sudden, he who has not turned on that TV in his room for three years, has to have a TV in his room. So, and this is just great, because I am trying to save money (hence selling everything I own) to buy the kids new furniture. I spent $176 on advertising for the neighborhood garage sale. The HOA reimbursed me with a check in the mail. My dad took this check without my knowledge and deposited it in his own account. (It just happened to be written out to both of us since that is how we are listed in the HOA). I wouldn't have even known about it but he mentioned that he got it a few days later. I told him that it is my check from the garage sale. He said he would pay me back. Fine. No big deal.

Then, he tells me that he has a GREAT DEAL for me. He is going to SELL me that TV that he was going to pay to ship to my sister for the $176 he owes me. That is a great deal on a $3000 TV!!! (Which is now worth much less than that. That was the ridiculous early adopter price that no one but stupid people pay.) Um, no. You can have that TV back. I'm not BUYING that fucking TV from you. Furthermore, I'll ditch the cable before I spend one more penny on TV stuff. So, he doesn't say anything and leaves.

Three hours later he comes back. And what does he have with him but a very generously sized flat screen HDTV wall mount TV for his room, and a new DVD player for his room. D says it is probably a couple grand in media equipment there. WHAT!!! FUCKING!!! EVER!!!!

My consolation is that now he is all into the novelty of the new TV and he stays in his room quite often now.

My dad and I are in different socioeconomic stratospheres. And I'm fine with that. He is older, he and my mom worked all their lives and saved for retirement, the fact that my disability negatively impacts my earning power so much is not his fault. That I picked a career in a low paying field was my own decision. I don't ask him for money. I don't say anything when he wallpapers his room in flat screen TVs. Or buys $1000 suits or whatever. Its his money, fine. I have to respect that and I do. But he doesn't respect my situation. He is reckless with my things, breaking things and not replacing them. Taking my food and not replacing it and then bitching when I or the kids eat his food. No sensitivity whatsoever to my situation. On the same day he bought all that stuff, I asked him if he could pay for the carpets to be cleaned now that a lot of the furniture is out of there. You know since it is HIS DOG that peed all over the carpet. I'm talking $200 here. I said I would make all the arrangements if he would pay. You'd never heard anyone bitch and whine so much. I think he is going to do it, but god I get sick of the effort it takes to get him to do anything.

My family is so financially defensive it is hilarious. Now I don't think that kids should just count on their parents to support them for the rest of their lives. And since I am the less financially wealthy in this relationship, I think the notion is that I want all his money or something. I truly don't. My mom once said that she didn't want me and my sister to just be interested in a relationship with her for her inheritance (which I don't think either of us ever had that motivation whatsoever.) But in my head, I snorted back, "Well, if all you value is money, then what do you expect other people to value about you?" This was an extreme moment of snark and not really what I think about my mother. I think there was much more geniuneness in our relationship than that. But the best way to make the relationship genuine is to make it be about other values that are above money. I think my family has struggled with that sometimes. I will ALWAYS, ALWAYS be less of a valuable, capable, competent, and especially hard working person in their eyes because my net worth isn't what theirs is. It doesn't matter how hard I work, how much volunteer work I do, how deep of relationships I have, how much I have really helped people and changed their lives, how much advocacy I do for some of the disability issues and health insurance issues that hold me back financially, they always will see me as not quite worth what they are worth. Every time I ever told them about any of the work I did, volunteer or paid or whatever...the first question was immediately "How much do you get paid for that?" And motherhood? Not worth a damned thing. I honestly think my dad doesn't see what I do with the kids as being any different than the two times a day he feeds the dog.

This woman that is interested in him...my sister and I are just kind of sitting back with the microwave popcorn on this whole dating stuff. It is hilarious. First of all, I will say that I only know of this woman through my sister. My dad says very little about her. So all of this is third-hand and speculative at best. I'm sure she is a nice woman, but I think that she is in for a rude awakening. I think she sees my dad as someone that he is just not.

She called the other night, and after my dad was done talking to her and had walked off, I noticed that he put the phone on hold instead of hanging up. So I hung up the phone. And right after I did, she called back. Later, I asked him if he put her on hold and then I hung up on her so she called back. He said, no, she just didn't like the way he said 'goodbye' to her. I think she is all "love you" to him. And if she expects to get that back, well, it may be a long wait. The last time I heard my dad say I love you to anyone was...well...never.

I know people are different around different people, so maybe I'm wrong about this, but I am afraid that my dad is not just emotionally available in a way that she might want him to be. But who knows. Maybe someone will  "change" him. I keep thinking that if he finds someone back in Kansas to date, maybe he won't visit here so much.

Which isn't totally fair of me. It goes without saying that people have many elements to their personality and no one is all good or all bad. My dad does have some good points. He makes the kids laugh. I do know that he cares about them. He can be empathetic if you sit him down and explain him the deal in a way he can relate to. Usually, reason and logic will win out with him eventually, you just have to push him past his own selfish bastardness. We do have a good time on his visits many times. I just get tired of pushing so hard for him to act like a reasonable human being. (He did eventually pay back my HOA money.) It takes energy I have better uses for. And having him and the dog here does make my job of caring for twins and a quadriplegic turn into caring for triplets, a quadriplegic and a belligerent teenage boy.

I honestly don't know how my mom could stand it and this is SO SO SO why I'm not married. I'm exhausted.

So that is why I'm a bad blogger. And if I can get him whipped into shape here soon, I can turn my focus on to other more interesting and intellectually stimulating matters.

Family, Names, and Family Names

I got a question in real life about the kid's names, which reminded me that I had the same and similar questions from you people that live in my computer that I have not answered, which reminded me that I have some other family related questions that I have not answered, so here we go:

What did you do for the kids' last name? Yours, D's, or some combination thereof?

The kids have my last name and D's last name for a middle name. It took a lot of thought and talking it out and even a birth certificate mistake to get to that point. I always knew I would keep my name, even if I were married. Once you develop a few degrees and a curriculum vitae and a professional life, it makes it really illogical to go and change to your husband's name for no reason. As for my kids, I always thought they would have my name, I gave birth to them, I would likely be the main go-to person concerning them and the primary caretaker. Seems like it makes logical sense that they would have my last name. But I was not opposed to incorporating their father's name into it somehow. Also, with my situation with D and him being the 'adoptive' father, it became more important to me that he have a lot of recognizable ties to the kids, since ~ahem~ we already had people who refused to recognize his role as their father. So, we decided when I was pregnant that they would have the dreaded two last names and be [first name][middle name][D's last name][my last name]. We decided that my last name would be last for  a couple of reasons. First, because when my mom died and soon after I became pregnant, I really wanted to incorporate her name (Diane Kathryn) into my kids names. Easy if they were girls, not so easy with two boys. Also, my dad asked me to have our last name be the kid's last name because otherwise it was the end of the line for that last name. That wasn't a big priority for me, but naming them after my family of origin name was sort of a way to name them after my mother. If my dad was happy in the process, then all the better. But I wanted to get D in there too, so we decided on the two names.

In the first few weeks after the kids were born, both D and I were driven nuts by the two last names deal, though. We had to get them SSNs, and insurance and me set up as a trustee for them and custody papers and doctors appointments and all of that kind of stuff. The whole double name thing was just the biggest pain in the ass. Bureaucracies just couldn't seem to handle it. They lost their records because they were filed under his initial or my initial. Or the name was too long for the computer. Or they hyphenated it and that screwed it up in the computer. We already had to spell out Naim, and the parents with two last names and addresses, so it was just inflicting more insanity to have to struggle with the last name as well. D and I talked again about it, and we both agreed to just go with one last name. The easiest way to do this, was to tell the hospital birth certificate administrator that we had put D's last name in the wrong spot and it was meant to be a middle name. If you and the hospital administrator sign an affidavit within the first so many days that a mistake was made on the birth certificates, it is easy to change at no cost and no court appearance is necessary. The hospital people were cooperative about this and new birth certificates were issued.

They now have two middle names. Either of which they can use or not use. When they reach the age of 18, they can decide what they want to go by. If they want to incorporate D's last name more formally, by going double or even choosing it altogether, I'm fine with that. They will have lots of options there.

Where did the name "Naim" come from?

I wrote about that here.

What is the significance of "Twinkle Little Star"?

This is name related as well. I don't know if I have written about Aaron's name or not. I had lots of girls names picked out and only Naim as a boys name. When I found out I was having two boys, I was stumped on a second name. When I was 32 weeks pregnant and had a facial hemorrhage and retinal detachment and had to have emergency eye surgery (and did I make enough of a stink about having NO ANESTHETIC except for numbing eye drops yet? NO? NO ANESTHETIC OR MEDICATION, people!). Anyway, this surgery lasted for over 2 FUCKING HOURS in which I was wide awake, flat on my back, with two babies suffocating me by squishing my lungs and causing really bad, bad throw-uppy reflux. And it is really not fun to have to throw up on the OR table, knowing that if you move before warning the surgeon, you could send a scalpel or whatever he was scraping on my eye with across your brain or something. And I thank you readers for patiently letting me bitch about that at least once every two months and work out my PTSD or whatever is up my ass about it.

I'm telling you all this also so I can rationalize the nerdygeekerotomy of why I named my kid after Aeryn Sun from Farscape and blame it on my crazed and compromised state at the time. Yes. I named Aaron after Aeryn Sun, a gun toting hot chick alien on the SciFi show "Farscape." And I decided this during this surgery.

But there is a nice part to this story. See, I was lying there and trying to distract myself from the surgery with any means possible. I was worried about the kids, at this point I was pre-eclampsic and in surgery and thinking something bad could happen to the kids at any minute. Naim was always positioned very compactly and way low in my uterus. It was hard to tell when he, specifically was moving. Aaron was always spread, transverse, across the top of my uterus, right under my rib cage, and I could always feel him moving. And could even very specifically tell what he was moving usually. So during this surgery, Aaron was moving around, and it was comforting because then I knew he was okay, and also it gave me something to focus on. I concentrated on him as my center. He was getting me through this surgery, it was all worth it to make sure he (and Naim) would be okay.

So I started remembering this episode of Farscape, where the lead guy John Crichton, an astronaut misplaced in the universe, is telling his love interest Aeryn about how he is lost in completely foreign part of the universe, in unchartered territories. He is compelled to make a star chart of the new stars wherever he goes. For a frame of reference, he chooses the brightest star he sees and uses that as his central reference point. He always names this star, Aeryn. She is his guide and constant in the chaotically changing equation of the universe. So, this is what my Aaron became to me during my surgery and the weeks of scary bed rest and contractions after. The center is my children. So, he is not so much named after Aeryn but after a bright, navigating star. His name sign is the sign for star but initialized with "A" hand shapes. I changed the spelling to make it a bit more common and male. But also in those few godawful weeks after they were born, I hung on to this thought. I may be about to die of pain and exhaustion but I can do this if I keep my focus on my center, the shining star, which is the kids. I would sing "Twinkle Little Star" to them when I was feeding them to keep myself awake and to remind me. Twinkle Little Star is the first song Aaron really learned to sing on his own as well. So, that's where that comes from.

Okay, I have a bunch of in-law questions in the qeue as well that I've avoided because I am sort of loath to write anymore on that. But the whole in-law issues seem to really bring out a lot of feelings of empathy in people and also of sort of a similar need to deal with that aspect. I get a lot of emails from people telling me their stories. And a lot of support as well, which has been really nice. It is kind of hard to balance not writing too much about it unnecessarily, yet also maybe kind of fulfilling a need that people may have to share and deal with some of these issues. My loyalty is, quite frankly, more towards my readers as compared to my in-laws, who I don't really think too much about anymore and so kind of seem irrelevant. But yet I still want to be respectful as you would be to anyone, even if I have no relationship with them. It is a hard balance to strike. So I will try to answer some of the simple ones as straightforwardly as possible.

Are you going to let the kids have a relationship with the in-laws?

This will kind of be a take things as they come and I'll know when I get there kind of thing. But I'm not going to say no. When they are old enough that D can care for them on their own (I do not want him depending on help from them to care for them), say when they are five or so, I would not object to them going to social gatherings with D. This is, of course, based on whether they would even be invited and whether D would want to take them over there, which as of now I don't think he is too keen on. But if they were included in D's family stuff, then I would be okay with it as long as they are ok with it. I would keep my opinion out of it, and if they came back and told me what fun they had...great. No problem there. But if they came back and told me that they were treated rudely, were left out, felt uncomfortable, or just didn't like to go, I would respect that as well. It would really be up to them what kind of relationship they want to have with them. I would not interfere unless I saw a major problem.

They do spend time with D's father, and when they are in town, his sister and brother and they really seem to enjoy them and vice versa. This is all initiated by them usually through D and takes place either at my house or his house. I just go with the flow there and I like that they enjoy spending time with each other. The only houses that have been sort of made "off limits" to us is his mother's house and his older brother and sister in laws house. But those settings are where the major family events often happen. So, we'll see how it goes. I have no interest in banning them from their relatives, as long as they are not hurt by them and enjoy them.

Which brings me to two kind of related questions.

Does it bother you that D spends time with/has a relationship with his family? And How do you handle the major holidays and birthdays?

In general it does not bother me that D has a relationship with his family. My main issues with D in that regard have been that I get tired of D complaining to me about issues he has with his family that he will not talk to them about himself. I admit that it was/sometimes still is hard for me to reconcile that D can have a relationship with people that reject his children. Despite all of our differences, and things that I have most certainly done wrong, this is the thing I can't get over. Cutting people out of your life just for the sake of avoiding differences of opinions, misunderstandings or conflicts, especially children who have nothing to do with it, is just morally repugnant to me. I know that in extreme cases it may be necessary to cut people out of your life. For instance, if abuse is involved or if perhaps a major complicated drug and alcohol addiction that is putting people in danger is involved. But to cut people off because they have different lifestyles or opinions, and their innocent children besides, that is just beyond the beyond in my book. I can't think of anyone ever that I have ever cut out of my life. Sure, there were times I called them to tell them I needed some space for a while. There is not an ex-boyfriend, high school or college friend, or relative that I can think of that I would turn away if they came to my door. I have set certain boundaries with some, but have not ever refused to ever see or talk to anyone again. And of course I have lost touch with people, but that is not the same as deliberately and maliciously cutting someone out of your life rather than just being brave enough to work out your differences (or even agree to disagree), especially when the other party is willing as I always have been open to. So, I'm going off now, but that is what is hard for me with D. He seems to accept it while being hurt and angered by it at the same time. Its frustrating.

LIke, once a couple of years ago, he called me up hurt and furious because he got a Christmas card that was addressed to him, Naim and Aaron specifically. Like as if writing their names on an envelop made up for the fact that she, in general, doesn't acknowledge their existence or even ask about Aaron after a trip to the ER, etc. I just laughed, but he read it like it was a slap in the face. I told him to say something if it bothered him, but he never did. Then, two weeks later, he was pissed again because he got a thank you card from the same person for a DVD he copied that he gave her for Christmas. The card went off on how she was so happy for the gift because of the "intentions." He thought she was reading WAAAY too much into a simple obligatory gift like it made everything ok. And who gives thank you notes for Christmas presents anyway? He whined. I told him that if he didn't speak up, she was going to assume everything was okay and was going to assume his intentions were accepting of her behavior. What else could she do? In our culture, saying nothing is complicit with agreement or consent.

I can't tell you how many letters he has written to them and even videos he has made of himself for them that tell them how he really feels, but he never gives it to them. This was hard for me at first, but now I just sort of accept it. I kind of washed my hands of the whole thing, not worth the space it was taking up in my brain. He is going to have whatever relationship he is going to have with them. I stay out of it. He does things I don't agree with and I used to get more involved in it but now I just don't anymore. There are things that he does that I will get blamed for, like currently he is using his dad as an unpaid attendant and I think that he should either hire someone else or pay his dad. This would come out of my salary and I'm fine with that. But I can't physically do the paperwork to make this happen. He has to do it. So I know I probably get blamed for this. Like I am the one hogging all the attendant hours when I have been more than willing to give up to half of them up. Things like this used to bother me, but I don't care anymore. He's going to do what he is going to do and I can't put a gun to his head.

So, that has been difficult, but I think over the past couple of years I've really gotten over it and moved on. In a weird way, it is almost reassuring as a parent that he cannot give up on his mother so easily and still keeps a relationship with her. Like, that mother/child bond is strong. And I think of my own relationship with my kids and I think, well, I'm never going to treat them THAT badly so the mistakes I do make will be recoverable. Or if I do screw up that badly, I will not put my head in the sand and refuse to deal with it, I will make an effort. So in some weird way in my head, it gives me reassurance that my kids and I will always maintain a bond since D can maintain a bond with his mother. She's his mother, and I accept that relationship as important. I try to give him space with it, if I didn't, I'd be acting just as bad as they do.

As far as holidays and stuff. I think if I didn't have kids, I would be much more flexible. But we have agreed to some standards on that issue. Basically, I have certain holidays and special days that I feel he needs to be here for. Christmas, Thanksgiving, kids birthdays, mothers/fathers day, Easter. Is that it? I think so. He has always been in total agreement about this as well. I have no problem with him spending their special days with them like their birthdays, anniversaries, etc. Also, for things like Christmas and Mother's day, I have no problem with him spending time over there on a different day. Like the day before mother's day or Christmas eve's eve. Other holiday's like fourth of July or whatever, we just kind of take it as it comes. I am not a big fourth of July person, so I don't care if he goes over there. But if the kids later on want to plan something and want him here, then I would expect him to be here. So, those are just kind of "lets see what the plans are" days. If we aren't planning anything special and they are, then I see no reason for him to sit around here. But if we are, then the default is us. He has always been in agreement to this.

Other questions kind of related:

How does it work, legally, when you have a donor? Did D have to adopt the kids with the home study and court appearance,e tc.? And, Do you and D have legal child support/custody agreements? Did you have to go to court for this?

The laws may be different in each state and I'm not a lawyer, blah blah blah...but this is how it worked as best I recall. Its been a couple of years so I'm rusty. Sperm and eggs are considered genetic material and thus anonymous donors do not automatically have legal rights to the children their donated genetic material produces. But as added precaution, they do sign the legal documents that waive their parental rights. So when there is a live birth from a donor, the RE has to file with the department of vital records or whatever a legal document that the RE and I signed that states that the kids were conceived through a donor. It also has the means through the andrology lab to connect it to the signed waiver of parental rights. So that goes together as far as the donor end of things goes.

In Oregon, the default father is assumed to be the husband. Even if the kids are from a donor, the husband is assumed to be the father. As long as the above stuff is filed, the mother can just put his name down on the birth certificate and its done and legal and there you go. Also in Oregon, the mother, if she is unwed, can really put down  whoever she wants to be the father. She can leave it blank, or she can even put "donor." She can put Joe Schmoe. (Then Joe Schmoe would have the right to contest this through a paternity suit if he wanted to, but she can put him down if she wants to, even if they've never met before). To tidy things up even more, when an unmarried mother puts down the name of the father on the birth certificate, he and she can sign a paternity affidavit that states that both are in agreement that he is the legal father and thus he has all legal rights and responsibilities to this child. This is what D and I did. So, legally, these are the documents following my kids: The birth certificate that names D as the father, the affidavit that we signed that says he is the father, the RE's affidavit that I signed that states that these kids are conceived from a particular donor, and the donor's waiver of parental rights. So we are pretty squared away, and it was not necessary for D to go through an official adoption. However, if we didn't do all this within the first 30(?) days of their birth, he would have had to go through the adoption process.

I'd be interested to know how this works for lesbian couples who use donors. Does anyone know? What interests me is this: People sometimes ask me if D could suddenly decide that he doesn't want to have this father gig anymore and just get a paternity test that shows he is not the biological father. The answer is no. He may have been able to do it in the first few weeks, but now, no matter what his biological link or even legal link is, he has a longstanding relationship with the kids where he is recognized as their father. So, the court will see him in this role and he can't just say, "sorry, changed my mind." What interests me about this is that I don't think lesbian women get the same protections that I get. The non-biological mother in a two mother family, I believe, has to adopt officially. (And there are states where she can't adopt officially?) If she doesn't, I think she can back out if she wants at any time, yet also doesn't have legal rights to them either. If I'm wrong about this, I'm sure you all will correct me.

As far as D and I and custody goes, we are not required to have anything official with the courts as long as we both consent to our own arrangements, which is what we've done so far. We have used one of those law document software thingies and have made legal power of attorneys, guardianship stuff in case we die, wills, and a basic custody document that is just maintained by us, not filed in court.

Our basic arrangement in more legal terms is that I have sole custody, D has visitation. We did this rather than joint custody for some stupid disability related reasons that are too long to get into. His visitation schedule (which is extremely flexible) right now is that he sees the kids at least three times a week. He can miss three visits a month in cases of illness or emergency only. He usually sees the kids more than that, though. I'd say four or five times in a typical week. Sometimes every day. As far as child support goes, it is very loosy goosy. Basically, he has to pay me something every month. Something, depending on his circumstances, can be as low as a dollar or as high as a million dollars. But quite frankly is usually between 50 and 100 dollars. In his hospitalized months, it was a dollar. My main goal here is commitment, not money. Since there really is no money to speak of. What is important to me is that he physically makes a payment every month, whatever that is. There are times when he also buys stuff for them as well, and incidental stuff that he pays for, but generally, financially, I am responsible for about 99% of their needs. If he were to win the lottery or be able to work more, we would renegotiate. When they are older and more independent, we will also renegotiate visitation so he can have them to himself for entire days or even weekends. We'll just sort of play that by ear.

Okay, I think I'm all caught up on questions for a while now? You can ask me more but be prepared to wait a few days, weeks or months!