I suck.
This summer, since about June, I've just sucked ass at most everything. Well, that's not true entirely. I had a big 'to do' list of lots of projects, and slowly and surely I've been checking them off. But other things have fallen by the wayside. Some of it, I don't worry about. My blog entries have sucked and been bitchy and barely coherent. I think I might have sent my friend, J, into hiding by doing a lot of cryptic sloppy whiny writing with no real purpose except to use him as my own private blog audience for the unbloggable. I don't know where my underwear is. Seriously, none of it. These things, although not great, I can deal with. They'll work themselves out. But my parenting has gotten sloppy. I've gone from giving myself an A- in mom-hood to giving myself a C or even sometimes a D.
They are off schedule, such that there is a schedule at all. They are not sleeping well due to being moved around 20 times. They have been sitting around doing too much unstructured stuff stuck in the house too much. They have been watching too much TV. They have been eating less nutritious meals. They have been yelled at by me in frustration. We have just been getting by day by day.
The problem is this: I am doing this parenting thing ALL BY MYSELF. And before anyone says that I brought this on myself, I ALREADY KNOW THAT. (But, hey. Why does it seem like people who've done fertility treatments get this more than people who conceived the ole' fashioned way? I mean, haven't we all--except in rare exceptions--brought this on ourselves? But I digress.) Okay, so I think most of the time I am a pretty good parent. I have a lot of skills that help me out in the whole parenting thing. So far, I'm mostly comfortable with my ability to be a parent. What I have to watch for, however, is fatigue and exhaustion. When I get fatigued, my parenting performance plummets. I start not thinking straight. The pain in my back and my feet gets unbearable to the point where I can't hardly function. I get bitchy. I start cutting corners and taking short cuts and we eat a lot of chef boyardee microwave dinners. I give in easily to the kids' requests to watch "TRAINS" or "WONDER PETS" because I have prepared nothing else for them to do and they are sick of playing with their usual toys. I start getting them up later and putting them to bed later and naps get screwy in there somewhere, if at all.
Mostly, I get SICK TO DEATH of having everyone want stuff from me all day long and having to be everyone's servant. I go hours without sitting down. The kids and the dog right at my feet, D's wheelchair taking up space in my kitchen that blocks where I need to be, I can't take a step without knocking someone over or getting stepped on. Then I've got my dad yelling something at me from across the room that I can't hear because he still can't figure out yet that I'm deaf. The dog wants out or wants attention. The kids want attention or food or a toy or a book read. My dad wants me to do something that has nothing to do with anything but he has a bug up his ass about, like fold the towels or help him spell something to look up on the internet. D always needs something, which is part of my job, but he asks me to do stuff in the most freaking inefficient ways sometimes. Get him butter, get him salt, and get him a "long handled fork where the tines aren't bent" cannot possibly come in one single request while I'm already in the kitchen. They have to come separately at three different times in the same ten minute period. There are days when I literally don't sit down and stop serving people for 11 or 12 hours.
I work hard on building a schedule where I can handle everything at a steady pace and with rest periods in between. I have found that if I don't lay down for at least a half hour during the kids naps that I have so much fluid collecting in my legs that I will stop peeing and feel like total slop. But I CAN do this and have it work. I have done it for a couple of years now. If everything is paced out right, I can keep up and be a halfway pleasant human being.
The problem is, there is not a lot of margin for error. When an unexpected or extra situation comes up, I can handle it for a day or two, but if the extra work goes on longer, things start to crumble. What has happened this summer is there have been some extra work and some emergencies (not serious emergencies in a real sense, but schedule busting emergencies) pretty much for three months straight.
One of the problems with being disabled is time management, the other one is help management. Time management is a problem, because even though I can tout all day long about how disabled people can do everything nondisabled people can do, just in a different way, those different ways are often not as efficient and take more people. My summer project has basically been to do this
- Sell and donate stuff to make room for the kids' new furniture and to raise money.
- Do some maintenance like cleaning the carpets and painting.
- Buy stuff for the kids' new room and set it up.
Unless the kids were going to be in cribs forever and only play with their baby swings and fisher price stacking rings until they are 18, it had to be done. And if I were not disabled, I could have done this in two, at most three weekends. I'm on my fourth month of this project. I probably have another six weeks to go.
Without going into boring details as to why this is so, Its just so much easier to do projects like these when you have a car and your husband can carry stuff up the stairs. To do things like get large baby items out of my house when I have no car, or to go and rent a Carpet cleaner, or buy paint, or get any kind of garage sale/painting/carpet cleaning done with no one to watch the kids, takes forever. Every step of this project that other people can just up and do took me hours of thought and planning and careful rationing of the help that I could get. I still have issues coming up, like, how to get the new furniture up the stairs and assembled, how to hang things on the wall so they will be straight (I have zero hand-eye coordination.) It has just taken forever and a day.
I sold my bedroom furniture and I'm going to take the kids' current furniture, (the yellow stuff in the pictures). This furniture is over 30 years old, including the twin--yes, twin--mattress. I fall right into the valley I started at age 7 in that mattress. I will probably eventually sell it and get myself some adult sized furniture, but that will be another project for another summer. (I have reasons for selling my crappy bedroom furniture instead of selling the yellow stuff, but I won't bore you with the logistics of that.) Anyway, I have been living out of boxes since May. I have been sleeping with the kids since mid-July. Currently, the kids are in their room that contains two pack-n-plays, a laundry basket, a stack of books, and nothing else. I'm changing their diapers on the bathroom floor, with the stinky diaper pale currently living in the laundry room. As of this writing, my underwear, which was previously living in a huggies box in my room, is now strewn throughout my little loft office because my dad decided he needed a box and so just dumped my underwear out and took the one they were living in. The kids clothes are in the laundry room, clean but unfolded in a basket. To get everyone dressed in the morning, I have to go scavenge in 5 different rooms.
I'm going a bit nuts. Contrary to popular belief, I am a very organized person. I tend to procrastinate on picking up clutter and doing housework, but in general, everything has a place that makes sense, I know where everything is, and everything has an efficient system set up. This will all get taken care of eventually. But I just don't have any block of time to do it with the kids. They will disorganize things as fast as I can organize them. And when can I do it? When they are sleeping, I have to rest myself or I will get too sick to do anything.
So, there is that. Which I'm not worried about because it will get taken care of. But it makes home life hard to deal with. Next in line for the summer chaos is D and the attendant stuff. Quick background. I NEVER was supposed to be D's "main" attendant. I was supposed to be back up, incidentals, special projects and emergencies. He needs another attendant that can do some of the day-to-day. He never can seem to hire someone or keep them. This is not entirely his fault, because it is just a transient job for most people. It is a 9 buck an hour/no benefit job. So his problems retaining people aren't necessarily because he is awful to work for, it is just that people move on quickly.
D takes the path of least resistance often. And for years, least resistance was me and his dad. When I had kids and moved out, I made it very clear to him that I could not do the every morning stuff for him anymore. He said fine and we set out a schedule. I would come over and do organizing, housework, litterbox stuff, incidentals. He would come over to my house and I would feed him and give him any leftovers or anything else I made to take with him. If there was a special project, I would try to help...such as hooking up a new computer or rearranging furniture or whatever. If his attendant was on vacation or sick, I would be back up. I would also help him shop and run errands. I would come over at a moments notice for emergencies. And emergencies for a quadriplegic are often and always. They are things like: He fell out of his chair. He can't get out of his van because the ramp got jammed in the curb. The cat got out. He dropped his phone and can't reach it. The electricity went out so his circulating air bed won't inflate. The dishwasher is leaking suds all over the kitchen floor. His catheter got disconnected. His bandage came undone. Things like that.
Also, I know this is controversial in his family, I've heard. But I do not think it is a woman's role in the relationship to do all the housework, cooking, cleaning, and childcare. So, when we lived together, I would clean the whole apartment, then cut the time it took me in half and those were work hours. I would do the same for cooking and laundry. I am not obligated to do these things because I am the woman in the relationship. There would BE no relationship if that were the case. So anyway, now that we live apart, housework isn't an issue, but I still count cooking, and I count childcare. I don't count up childcare hours officially. Because the childcare I'm doing would put my hours off the freakin' charts and I only have a set number of hours I'm allowed to work. But, as the noncustodial parent, he would in general get his, say, two weekends a month and one night a week, right? So then I would get a break at those times. I don't. He can't take care of the kids himself. I have to be here. And although I can go upstairs for perhaps up to an hour now while he plays with them downstairs, I still have to do all the feeding, bathing, dressing, most of the disciplining, etc. I have to be available at all times. Things happen. Like one time, Aaron was kneeling on a dining room chair and was practically laying across the table. Then he pushed his chair away and his feet were dangling while he held on to the dining room table all prostrate for dear life. "LISA! Aaron is stuck on the table!" "Lisa! Naim got his foot caught under the couch and can't get it out!" So even when he is with them, I'm still not really getting much of a break. And this is not his fault or anything. It is how it has to be. But the point is, those are attendant hours. You bet your butt. I ain't no little woman of the house.
Since he lost his daily attendant last December, I've been on his case, as I have been for six years, to get another one. I knew his dad was coming over and helping, which I didn't like because basically, they think that I'm hogging all the attendant money while dad does a lot of work. And, hell, I don't blame them. It isn't fair to him. But the culprit in all this is not me, it's D. And I don't really totally understand exactly why or what his motivations are in all this. I think mostly that he just doesn't ever sit down and diligently deal with the problem long enough to get to its solution. It is just easier to put me off and and let his dad come over. Because Dad will do WHATEVER D wants him to do. And although I wrote a ranty post about it a couple of years ago that got me in hot water, now, I'm just like...it is between them. Whatever they work out--fine.
But, I still don't like the fact that I get attendant money when his dad is doing a lot of work over there and getting nothing for it (um, and helping him with rent). The whole take advantage-ness of it makes me shudder. And for me to be even remotely involved in that, or even seen as having some part of it...well, I just can't sleep at night with that kind of thing on my shoulders. So in March, we had a super big argument for the billionth time about this. I said if he wasn't going to hire someone, why not just pay his dad? He didn't want to and told me that because he is a relative, his dad couldn't get paid by the state. He also said that his dad might have some sort of retirement/tax related problem with getting paid. So I gave him two months to hire an attendant before we would talk about it again.
Two months went by and nothing. So, I said, OK. Your dad is your attendant. Pay him. (If you are wondering why I didn't just pay him out of my salary, I totally would have been willing to do this. However, because I am on medicare, I have to account for every dollar I make. If I paid him, it would still count as my salary to Medicare, and if I tried to replace the income, which is the whole idea...I would have lost my medical insurance. I am pretty uninsurable without medicare. I wanted this all done on the books, legal like. I didn't need one headache to replace the other.) So I said, lets figure out how to get him paid. Can you pay someone else, like a nonfamily member and have them give him the money or what can we do? And he said that suddenly, he can pay his dad even though he is a relative, he just needs to get a provider number. Oh. Okay. So do that.
Well, he needed to talk to his dad about this tax/retirement problem. Okay. Do that. So another month goes by. Nothing. Then one day, his dad was over there when I was, and he started talking about how tired he was. And I find out that, unbeknownst to me, he has been going over there and working SEVEN DAYS A WEEK! D told me it was just like 3 days a week. Holy shit. That isn't fair to anyone. So, I told D right there, we need to talk to him about getting him paid and some days off. So, we sat him down, and it didn't seem like he had any problem with taxes or retirement or whatever. It was like the first he heard of it. Then, I sat there and wracked my brain trying to figure out how I could get over there and give him at least a couple of days off.
The deal is, D can get himself up and out of bed. It takes him a while and he probably should be conserving his energy for other things. Also, it is dangerous for him to be doing that stuff and it really isn't good for his health. He just really can't do a real good job hygienically without help. And he could easily transfer and fall on his ass and get another life threatening pressure wound. He really does need someone there everyday in the morning. (Hell, I wanted him to keep our old apartment and get a roommate/attendant. They tend to last longer, although are harder to find. But that would have solved 75% of this problem.) But, he's picky and sometimes just likes to get himself up and not have to deal with people in the morning.Which is what I thought he was doing and why I thought he was resisting getting another morning attendant. But his dad, according to D, just can't relax and feel okay about things unless someone is there in the morning seven days a week. So it was a concession he made, he says, to make his dad feel better. Without telling me. No wonder he hasn't been in a rush to get another morning attendant, he hasn't NEEDED to. Okay. So anyway. I take on two mornings, and I am going to try to take on a third this coming fall when church starts up again at 11:15. And finally, I just got a new time sheet for August that has the adjusted hours. Which means that his dad will start to get paid. Good, good. Now I can sleep at night, at least.
And so, what that whole story boils down to is that now I am actually doing more hours for D for less money. I am glad that D's father is getting paid and getting some days off because that makes it right. But if D would just get off his ass and hire a goddamned attendant, then I could be at the very least be working less hours over there, even if I also did get less money. And in the near future I will need to replace that income in some way, so that will be more working hours for me. All of this work, keep in mind, is without childcare. I take the kids with me when I work for D, which is hard. And whatever new income I come up with will probably be a work at home gig and will have to be while the kids are sleeping.
Okay. So, moving on to why else I suck. The straw that broke the camel's back this week was our poor kitty cat, Scrapper. Scrapper, you may remember, is our feral kitten from Kansas that came from my sister's efforts to capture-neuter-and -release the feral cat population in her neighborhood which was getting out of hand. Scrapper is blind in one eye and had all sorts of health problems her first year. But she has been fine since then. She is probably my favorite cat I've ever had. She is super sweet and affectionate, but also is very playful as well. She's also a bit of an accident waiting to happen. She is a klutz and is always getting into predicaments. She is funny. Anyway, she is sick. She is only four years old and--we just found out--has heart disease and liver disease. They are not sure why. But after three visits to the vet this week, we have come to the conclusion that she is not long for this world. She is fine right now, but she will probably die within the next several months.
I have had too much death the last few years. Actually, I got Scrapper and our other cat, Kai, because I was so surrounded by sickness at the time that I needed something healthy in my life. My guide dog was near the end of her life, D had been very sick that year, I was working in the cancer ward of a children's hospital, my fertility was all screwed up, and my mom was dying. Kai, and later Scrapper, were just something refreshing that I could take care of that were strong and well and healthy. And I needed that. This was before my kids, BTW.
So, it is very sad that Scrapper is so sick so young. And then its just the logistics of getting her to the vet and the expense and when to know when to quit treatment and the added time it takes to care for her with her new meds and whatnot.
I had to go to our monthly church potluck thingy last night after spending the morning working at D's, the afternoon at the vet, and the early evening running around trying to find something to take to the potluck. Somehow I always get the main dish or veggie main dish. I mean, I've had it like 5 out of seven times. I'm not sure how that happens. We ran into the deli and got some kind of chicken. And then when we showed up at this thing, someone asked me what we had brought it was and I just stared at her blankly and I just couldn't even remember. I was so exhausted, I nearly fell asleep in this meeting. I couldn't keep my eyes open. I couldn't put together a coherent sentence. I shouldn't have gone, but how do you not go when you have the main dish?
And we are walking home with the kids who haven't napped all day, and D says, well are you coming over to my place? At this point, I'm narcoleptic. Blocks are going by that I don't remember walking, streets I don't remember crossing. I said, well, why don't I run in and give Scrapper her meds and you can stay with the kids for a sec? Because then they are going to want to get out of their strollers and play and the whole thing and I just want to go home.
But you left the place in kind of a mess, he says.
Well, a wee wee bit. They did leave cars in the living room and I did not have a chance to pick them up. D would not be in too much trouble for a night with them there, but they would sorta be in the way. But I CAN"T TELL you how much this statement pissed me off. But I was too tired to say anything and went in, gave the cat her meds, picked up the cars while the kids whined about wanting to play with them, and was getting ready to leave. Then D wants to divide up the uneaten chicken from the potluck.
Fine. I go to do this.
Then, at the same time Naim is whining to me about wanting candy that he's not going to get, Aaron starts taking out the cars I just put away, and D starts complaining about which piece of chicken he wants vs. which way I am dividing up the chicken.
Okay. THAT did it.
I yelled at everyone. I yelled at Naim, I yelled at Aaron, and I yelled at D. I took my kids, threw them in the stroller a lot more aggressively than I should have, and left. FUCK THAT SHIT.
Me and the kids made up at home before bed. My dad was nowhere to be found, which was nice. The dog was asleep. The kids in bed. And me asleep before 11 o'clock. Today, we did nothing all day. Glorious, glorious nothing. I rested. I even spent an hour just laying in bed while the kids brought me books to read to them. I even told D not to come over tonight. I wasn't cooking anything. The kids and I had frozen pizza.
It was the fourth anniversary of my mother's death today. It was rainy and dreary. Oh! and did I mention it was fucking Air Show weekend? We live less than a mile from an airport and we had four days of deafening war mongering machinery over our heads. Which last year, if you remember my ranting, went plummeting into a house not a half mile away from mine. I hate the air show. The kids can't nap. You can't think it is so loud. You can't have a conversation. I'm so glad that tomorrow we will have some silence.
I was thinking today of how sorry I am that I can't talk to my mother about this whole balancing act you have to do as a mother. And how in the hell she did it? And what regrets does she have and what would she have done differently? I think perhaps one of the main things, besides the disability thing, is age. My mom had kids at twenty. I had kids at nearly 34. I am thirty seven years old, I have kidney disease, I am deaf and blind, and I have two two year olds. This would have been so much easier to have done in my twenties. Why did our moms tell us for so long not to get pregnant? This 'older' parenting sometimes kinda sucks.
Being a disabled parent does give me doubts sometimes. It isn't about the things other people think about, like being able to keep track of the kids at the playground or hearing them cry or whatever. It is about not being able to give them enough time because everything takes so long. Intellectually, I am not worried about my kids development. I know they are doing fine. I also hate to get into comparing children, because it isn't fair and isn't important in the long run.
But last night, I watched the children of my co-potluckers, all of whom are within a few months in age as mine. They each have one kid. (One family has two but their other daughter is 18, I think). One of them in particular always kind of fascinates me. His motor skills are far, far beyond my kids. His social skills and oral language skills are pretty good as well. And all kids are different and blah, blah, blah and I shouldn't be doing this I know...but I wonder, what is she doing that I'm not. What can she do that I just...CAN'T?
This family, and I don't mean this is a bad way at all, are still really into exploring new parenting techniques and are analyzing everything they say to their kids. Which I do a fair share of myself, but my point is that I think our actual parenting skills are comparable. She is studying things I studied a long time ago. But we both look at parenting as a skill and although we do things differently, I'm sure. I think there we are pretty comparable.
But...this family takes that kid everywhere. All over the place. I am a little dumbfounded by the schedule they apparently keep. Everyday seems to be a nature hike or a camp out or a berry picking thing or a play date or whatever. This kid is out of the house doing things way more than my kids are. Is it that?
Or...is it the ratio thing? The 2:1 rather than the 1:2. One night last week, D was over and Aaron fell asleep at the dinner table. (See? naps are all screwed up.) So after dinner, I laid him down on the couch and he slept all night. Leaving D and I with Naim alone. This NEVER happens. The sheer amount and concentration of attention we were able to give Naim that night just astounded us both. It was so quiet. There were no interruptions. He could stay on something as long as he wanted without brother butting in. He had both of our undivided attention. Both D and I were taken aback at the thought of what it must be like to just have one kid with two parents. I heard a quote from a twin mom (who she attributed to Bill Cosby) where she said that until you've had more than one child, you aren't parenting. But that 2:1 ratio is amazing, and it is almost to much to wrap my head around when married people with one child talk about how hard it is. (As I'm sure anyone with triplets or more would say that about me as well.)
Maybe its that we just don't stimulate them enough, or as much as we should. D has limits to what he can do with them. I don't really have limits, but I also cannot take them to 59 places a day. Or even get them out of the city and into nature without help. They seem happy and stimulated on most days, although I do think this summer in my sucky parenting days they have been bored and fussy for something to do. This fall, when the room is finally together and their toys are in it and I can think again, I am planning on getting back to 'school' with them. I have been developing a curriculum for them. And by that, I don't mean I'll be having them do worksheets all day or something. I mean that I have been listing out the things we want to work on. The big potty training fun, dressing, jumping and gross motor, speech for Naim, sharing and taking turns for Aaron. And just working on that all important, make or break schedule so that we are well rested and well fed and are getting outside regularly and going to the library regularly and being with other kids, etc. Time for reading and time for music and crafts. It isn't that I think they need a curriculum so much--I do.I'm just a teacher geek and if I don't plan it out with a purpose and a rhythm, it won't happen. As it really hasn't much this summer. With all the extra work this summer, its pretty much gone to crap. But I know that I can improve on that.
Or so maybe is it just the twin/preemie thing? The only thing that I see that my kids are obviously seriously behind in is gross motor skills. And this has a very rational explanation, I am told by my pediatrician. Preemies have the most trouble catching up with gross motor. The last month or so in utero is simply building muscle and practicing expanding and contracting them. Preemies loose out on that whole month. When they come out, they are usually busy dealing with eating/digestion issues and over-stimulation, so they don't really go back to building muscle and practicing for another month or so. Gross motor is the last thing that usually catches up. Pair that with the twin thing, which makes it worse. Twins stop growing in utero when they run out of room (mine did the last few weeks.) They are still developing their heart and lungs, etc. So it is still important for them to stay in as long as possible. But they just don't spend that last trimester growing like singletons do. My kids are still a bit on the small side, and they STILL can't jump. But they are progressing through all the stages of development, albeit more slowly. So maybe its just that.
In general, if I can be academic about it. I don't worry about them. They are doing great. Which the exception of gross motor (which has a plausible and solvable explanation) they are developmentally on track. They are healthy. They are happy. Most of the time, I have a tremendous amount of patience with them, and when I do blow up, it is never physical and I apologize and make it up to them by spending extra time with them. I am self aware enough to know that when I do blow up at them, I need to stop what I'm doing, take down the workload, and get some rest. My healthy start teacher says they are doing great and always compliments me on my parenting and says she wishes all of the parents were as smart as me, so I must not totally suck ass. It is just moments when I panic. I think maybe all parents have these. How bad am I screwing this kid up? Probably not as bad as you think.
I love them, and although I don't think love conquers all (sometimes you need a break and a babysitter!!!) I think that if I can work hard over the next month to get us going again, we should be in the swing of things by October. I will be holding me to this.
