Twinkle Little Star

This is an awful, ranting, venting post and you don't have to read it. I beg of you...run and save yourselves.

I don't want to go into a rampage and speak badly of the relatives, here. But there is a big problem interfering with D's success and I need to vent a bit about it. But I will use the rule of Dooce, and not blog anything that I haven't already said to the person's face.

It is a complicated situation with D's parents. They mean well, they love him, they are good people...but they are a huge roadblock to his getting his life on track and they don't get it at all. To be clear, I'm not blaming them for D's problem of letting his life get out of control to the point where it has severely damaged his health, that is on him. But they are enablers in the situation big time and it has become a very codependent relationship that has a very heavy price tag.

Parenting is all about the slow relinquishing of control of our children. Guiding them to independence and then just letting them become who they are. We do not own them, they are not ours. We are only blessed with temporarily being responsible for them and shepherding them to adulthood. It is very hard to do this at just the perfect rate that doesn't give the child too much responsibility too early, nor hold them back for too long. No one does this perfectly, but by the time the child is somewhere in lets say his/her early twenties (in our culture at least) it is time to relinquish control and responsibility completely, and let our relationship evolve into a more equitable one.

I came from a family where I probably had a little more responsibility too early. Although at times this was hard, I did become very independent and resourceful. In D's family, it is very different. When D was 17, he had a car accident. When most kids were enjoying their senior year with the new independence of driving, picking out colleges and majors, preparing to live out on their own and get a job and/or an education, growing up...D was thrown instantly back into infancy. His parents had to wipe his nose, help him with his bathroom needs, help him start his life all over again. Slowly, D began to get control over his own life. He went to college in Kansas and then in Oregon. When I met him at age 19, two years after his accident, he was a little behind on his independence. It was understandable, and over the years (especially when he moved to Oregon), he gained control over his life and grew up. He was doing quite well, and then he hit a glitch.

He took an internship in Portland the year before what would have been his senior year. He became very sick from a pressure wound (this one, not his fault. More like a rookie mistake on every body's part). He lost his job, he didn't have the money to go back to school, he became so sick that he really didn't have the wherewithal to manage his own health.

At this time, his parents had retired and decided to move up here from Kansas. I stepped in and organized what we sort of jokingly called "the intervention" and we spent the next year, with his parents help, getting him back on track. He got better health-wise, went back to school, and seemed to be doing OK, but he never seemed to gain back his independence again totally. He seemed to regress into that child who needs his parents.

And his dad ate it up. At this time, I was in my own zone dealing with job woes and my mother's illness and death. I laid around the house a lot and was out of town a lot. D's father came over and would clean the kitchen, bring us sandwiches and food, take D's van to get a tune-up, all kinds of little things. At first I thought this was harmless and the old guy was helping us out. I was under the impression that he enjoyed coming over and doing stuff because, as a newly retired guy in a new city, he was still finding his way in his new life and needed some busywork to feel useful. Sometimes I felt ashamed that he was doing so much for us, but D assured me that he enjoyed it and I was too unable to just accept a nice man's help. So I loosened up and didn't worry too much about it.

But then, the shit hit the fan. When we told them we were pregnant, they flew off the handle. They both acted like we had selfishly put forth a huge additional burden that they would have to take care of. They thought they would have to raise our children. They brought up everything they had ever done for us, as if we couldn't have gotten along without them. It was a tricky situation. How do you tell someone that you appreciate their help, but that you could have totally done without it?

D's dad Tells stories. Lots of stories. Some of them are quite entertaining, and some of them I've heard 85,000 times. But that is him and I can deal with that. But I started to notice with some amusement about ten years ago that in all of his stories, he is the STAR! He is the saving grace, the rescuer, the hero of the day. You know he's self promoting and that these stories are tall tales, but you just laugh and go along with him.

Then I realized, he needs to be the STAR. He needs to be the hero, the rescuer and the savior. In his career in the marine corps, he was the hero, in his second career working for a state agency, he was the hero. Now, with no job to be the hero in, D and I had become his project. He thought he was saving us and we would be lost without him. It's tricky when you are disabled, especially for D, because you DO need help from people sometimes, and you appreciate their help, but you also are in control of your life and responsible for yourself. Or at least you should be. Non-disabled people get help as well. You may hire someone to paint your house, fix your car, cut your hair. You may get friends to help you move, give you a ride when your car won't start, etc. Say you have a friend that is really good at cutting hair. She cuts your hair for free, and you appreciate that. Maybe in exchange you babysit her kids or something. This may not be a formal deal, its just something you guys do for each other. If suddenly, the person wasn't available for cutting your hair, you might just go to a salon. You appreciate her help, but you are not dependent on her. She did not save you from a lifetime of long, straggly hair, right?

D's dad thinks that he is saving us, that we are completely dependent on him and no other. I think it feeds his ego. I checked out of really ever having him help me again after I figured this out. D, on the other hand, has succumbed to it and come to be sort of codependent on it.

And its not like they make it easy to take a stand. They get offended if he makes a decision himself or don't report to them every second or let them be "included" in every aspect of his life. His dad calls up begging sometimes to come help him out with something...but then it bites him in the ass because his parents have no trust or faith in him to do it himself and play the martyr role with friends and relatives. (Which gets us in trouble because they think we are taking advantage of the old guy.)

Here are some examples. One time, D needed to have a very minor surgery to replace a pump that he has implanted in his abdomen that administered medicine into his spine. He scheduled it over spring break, and his father offered to come out (from Kansas) to be with him during the surgery. D said OK, because his dad had not been out to see his place in Oregon yet and thought they would have a nice visit before and after his 2 day hospitalization. Then, years later, it has been brought up in these terms by D's dad, "What would D have done if I didn't come all the way out to Oregon to take him to the hospital? How would he have gotten there? I had to move out to Oregon because coming all the way from Kansas to help him just wasn't practical." Of course, D could have had his friend or attendant drive him to the hospital, or taken medical transportation or a cab to the hospital. His brother and SIL could have taken him. We all could have visited him. There were plenty of other options. But D's dad had it in his mind that he was the savior there. Another time, I was coming home from work and I accidentally got off the train and onto the wrong bus. This was totally my dumb mistake because I saw a bus rushing past and thought it was mine and didn't even ask the bus driver what bus it was when I flagged him down and got on. I soon realized that the bus wasn't going where I wanted to go, so I got off on a major street, walked to a Wendy's and called D to tell him what I had done, and now I would have to take the next bus back to the transit center and get on the right bus. D's father happened to be there, and he offered to come get me. Great, I say. I'm tired and I'll get home a lot quicker this way. I thank him and truly appreciated the ride. Then I hear from someone else about how he said I got lost and didn't know where I was and it was so lucky that he was there to rescue me or I would have not known what to do. Whatever. This stuff pisses me off because I take some amount of pride in being able to take care of myself. D is more immune to it because he grew up with this.

D's dad says things that really scare me, or that make me really sad for him. He says that he didn't want to move to Oregon, that he'd rather stay in Kansas, but he has devoted his life to D now, and that is all he cares about is making life better for D. This causes problems for D's mother,  I suspect, because I think she had designs to finally spend some quality time with the old guy after he retired. I guess, even when he is home with her, he is waiting by the phone in case D calls.  D says, I'll call you if I need something, and his dad will only let a day or so go by before he calls up offering to do this or that.

And to tell the truth, sometimes he just isn't that helpful. He means well, but he is a time suck for D and many times D spends so long explaining and directing him that it doesn't really help D save time. Then D has to spend much of his time reassuring him that he is okay and stroking his mother when she gets worked up that he doesn't get time to take care of his own stuff. It is a really complex and hard situation.

D's mother is a different version of this problem. She takes on his issues as her own and wants the attention for herself so people will stroke her and feel sorry for her. She is a very strong, capable, smart woman that is to be admired, but she likes to play weak sometimes for attention. D is seeing a psychologist at the rehab center which is his business. She calls up this psychologist and wants to talk, but of course the psychologist tells her that she can't talk to her without D's permission. She doesn't ask D in advance, she just calls. Apparently she wants to get together with D, his Dad and the psychologist because she is having a hard time dealing with the amputation. She wants to talk to D about her feelings about his foot getting amputated. Um, well, I"m sorry she has some issue with the fact that he has no left foot, but isn't that her issue and not D's? Isn't D busy enough doing rehab all day long and trying to get his life organized? Perhaps D has his own issues about the amputation and he need not take on his mother's right now? This is not about her! I'm not saying it hasn't been hard for her to deal with the illness of her son and his disability, but she puts it on him like he needs to coddle her and help her out with it.

D is also to blame. Of course he agrees to let the psychologist speak to his mother and invites them to participate in a meeting so they feel involved. He always plays the diplomat and gives in to their manipulation. He lets things go and doesn't take charge of things that need to be done because he always knows that dad is there to fall back on. Say his car needs some repair. This is something that D could do himself but it would be quite complicated for him to get rides to get back home, etc. So I have no problem with the fact that he gets someone else to do it for him. But he should be the one who keeps track of when its done, how much it costs, etc. He will put it off and procrastinate until his dad says, "Well, D, I think I better take your car in for repairs."

D's father says that until D can show that he can take care of things himself, he has to help him. But he never gives D a chance. I'm not concerned that D physically do everything himself, that is impossible. It is not the help in and of itself that is the problem, it is the smothering and needy control that they place over him. It is awful for me to see his self confidence wane and disappear like it has done in the last couple of years. The more he lets his parents take over, the less he bothers to do for himself, and the more depressed and out of control he gets.

I've even had this happen to me. I'm guilty. When D went into the hospital, he asked me to take care of the cats and clean his apartment really well while he is gone. I agreed to do this. But then every time I went over to work on it or take care of the cats, his father had been there and I couldn't tell what was done, if the cats had already been fed, things have moved around and I can't find stuff. I go to get the mail and its already been gotten. He all the sudden decided to get the carpet steam cleaned and perseverated about that for days. Do you know how frustrating it is, when you are a single mother of twins and have very limited time to get things done and your twins are crying out of boredom on the floor to mop a floor that you are pretty sure has already been mopped? To vacuum when it looks as if miscellaneous parts of the apartment have already been vacuumed? To waste your precious time doing housework that someone else has sorta, kinda, done but you aren't sure where he left off or what there is to do? I put a towel for myself in D's bathroom to wash my hands with, and every day my towel is gone. His dad takes it to launder it. Just leave me my fucking towel, OK? You're not helping!!! So I'm guilty. I still go over everyday and feed the cats and visit them, but I just completely lazed out on the housework. It just started feeling so futile and like such a waste of my time. I haven't done done a thing there for a couple of weeks because I can't make heads or tails of what the hell D's dad is doing there and why he can't trust me to clean the fucking apartment.

It's not just because we are disabled, because he does this to D's brother, Q as well. Q is a nice guy who is thirty five and single and has a low paying job. He is easy -going and funny and I like him (in fact, I used to date him.) Q is a party-er, a forever teenager, and a player. That is his choice. He lives cheaply and spends his money on partying and entertainment. To me, it seems like a lifestyle choice. Not one that I would make, but who am I to judge him if he is not causing harm and he is happy? Well, he comes up (he lives about three hours away) every so often and does his laundry, parties in the big city, and has his dad pay for things to be done on his car. The tires need replacement? Dad will do it? He needs a whole new car paid for so he doesn't have a car payment? Dad will buy him one. Well, Dad thinks that he has to bail Q out because Q has not demonstrated that he can do it himself. Well, HELLO? Q is no dummy. He's using you to bail him out. What would Q do if you did not get him a new car? He would probably have to take public transportation for a while, save some money and not go out so much, and/or get a car loan and buy his own car. Then he actually could demonstrate that he can take care of himself.

There is a word for this. Its called being an enabler. It is a co-dependent thing and it is as much the enabler's problem as the person playing "victim." When my parents would let me fall flat on my face and then work my way out of it, I might have been mad at the time, but now I am so appreciative that I can handle so many things myself and direct my own life.

Sometimes the best thing you can possibly do to help someone is absolutely nothing.

I found this on the Internet and copied it. Now I can't remember where I found it so am unable to give proper credit:

I love you so much I will:
Pick up your shoes
Carry your pack
Pay your traffic ticket
Lie to your boss
Bail you out
Empower your bad habits
Bring you your fix
Carry your burdens as my own
Do your homework
Do your thinking
Remove rocks from your path
And strip you of the joy
Of saying, "I did it myself!"

Okay, and I've not even gotten started on the hot/cold/lukewarm way they treat me and the boys whenever there is some problem in D's life. But whatever, I just wish that all of them would figure out how to remove this giant barrier that in blocking D's road to success and have a normal adult relationship with each other. The shrink has challenged D, after he gets out and has his attendant care set up, to go thirty days without asking for or accepting help from the parents (who are in their 70's and need to go on with their lives.) I think he panicked for a bit, but then he seemed like he was willing to take on the challenge.

A Portrait of My Children

Kids, I went to get your picture taken today. This will probably be one of those pictures that all the relatives will have and will follow you for the rest of your life. So let me tell you a bit about yourselves as you are on this day. I am going to do this without using any comparatives, such as more or better, because I have a feeling that as twins  that is all you are going to hear from your relatives and others. Naim is better than Aaron at this. Aaron is more that. When you hear all these comparisons, always remember that it doesn't matter. Your mom and you will always know that you are both special in your own ways as individuals.

Aaron,

You are a stocky, round-faced, Gerber baby who smiles easily and you show off your six teeth that came in almost all at once at six months of age. Your eyes have changed from a brilliant blue to a grey-hazel that changes with what you wear. People say you look like the donor that helped us have you and that you look Russian, as the donor was Russian. I think you look beautiful. You have features that I would call "pretty" even though you probably won't like me saying that later on. When you smile, it is with your whole body. Your eyes look upon me with joy, and your arms and legs kick around with delight at what a wonderful thing it is that has been entertaining you.

Right now, you are doing what Grampa Fred calls "the swim." It is not quite a crawl, but a scoot. You are very proficient at it. You are constantly crawling and exploring and getting into every nook at cranny that we've never thought of baby proofing. Currently you make a daily trip to visit the closest spring door stop. You enjoy the BOOIIING sound that it makes when you hit it with your finger. You take the little rubber knob off and I have to watch that you don't swallow it. You can keep yourself busy exploring a box or pulling books off the bookshelf (all of them.), but when I come close, I am greeted with a big smile and an immediate scoot in my direction. When reaching me, you try to climb up on me, you're getting pretty close to being able to do it, and I pick you up to get a dose of Aaron cuddliness.

And you are cuddly. You are very affectionate and love kisses and hugs. I am your favorite plaything right now. You like me to hold you and bounce you on my lap and you arch your back so you can hang upside down. You like any sort of movement.

Your grampa says you are "tough" because sometimes you will fall over on your head and just laugh about it. I've always seen you as sensitive. When you cry, it is because you are really hurt. And I don't just mean physically. You have cried when I have had to step over you and could not reciprocate your affection right away. Today you were so offended when you crawled into the kitchen at your daddy's house and I busy cleaning the kitty litter. I know I'm such a mean mommy to not let you play with a plastic trash bag with dirty kitty litter in it! But you soon forgave me and when I was busy with my hands full of cleaning the litter, you were satisfied to just plant yourself around my legs.

You are mostly easy going and you like to socialize with other people. You are willingly held by others and will soon smile at them and participate in their games. You like animals and always want to pet the kitties and Abbey. You graciously put up with Abbey licking your face and are always interested in what she is up too. You can be quiet for long periods of time, but you do say your mamamas, and dadadas, and just today you were saying va va va. You also make your "yum yum" noises when you eat. You are a bit of a picky eater, but given a few tries, you will usually eat what I give you.  You love to snuggle up and touch my face with your fingers. You are a loving delight from your widows peak of dark hair to your toes that are always in your mouth. I love you more than words can express and am so thankful that I get to have you in my life.

Naim,

You are such a cutie patootie imp with a secret smile. Your smile is secret because you show it only to those closest to you. I'm so lucky to be one of those people because when you do smile, its BIG! Your little mouth just transforms into a huge amount of joy. Lately you've been very proud to show off your two little bottom teeth, with another one on the way. I always get the feeling that you've been here before, and this time you are going to study things a little harder and enjoy things a little more and have things your way a little bit more often. There is just a knowing about you. You are bright and understand things quickly, and you are only going to do what you are interested in. You have a bit of blond hair coming in, and sky blue eyes, but other than that, you probably look a bit more like my side of the family. You have a bit of a mischievous side, and there is always something ticking behind your eyes that you might not quite be ready to share. You watched your brother scoot around for weeks in confusion and frustration that you couldn't get to where you wanted to go yourself. Then just about a week ago, you just started to crawl a perfectly executed crawl. At first you tired easily, but within days, you were off. You think ahead and like to know where you are going first. You don't just haul off with no destination in mind. I see you spot your target and make your plan.

You also need some time to think about people. Mom is number one right now, but I don't think you want me to know that. But every once in a while, I get lucky enough to have a full fledged Naim hug, and you even try to give me gooey kisses sometimes. With others, you like to watch them from afar for a while before you'll let them get to know you. When you don't feel comfortable in a situation, you let us know. Today we took you to get your picture taken, and well, that photographer woman was just off her rocker, wasn't she? She was making funny noises and fiddling with some big machine while you were just supposed to sit there on a table. You were having none of that, and you made it perfectly clear with the most sorrowful pouty teary face ever. But then I would pick you up and you would immediately clam up and be perfectly content.

But when you are home, oh how you talk! You talk all the time! You like to hear yourself talk and watch yourself in the mirror as you do. Your first words were "ni ni ni" which I think is from hearing your name, Niam. Then once you were on your daddy's lap and you looked at me and said "ma ma ma" and I got tears in my eyes. You didn't know what you were saying, I know, but it was the first time I got even close to being called Mama. Since then, you haven't stopped talking. You like me to bounce you around, too, but you say "AAAAHHHH" and enjoy listening to the vibrato that occurs when you are being bounced.

And Naim, there was a time when you couldn't figure the whole eating thing out, but now, you eat and eat and eat. We can't interrupt you when you're eating. That is NOT ALLOWED. You open your mouth so big to get your cereal and fruits and vegetables, I think you are going to eat the spoon and my hand up to my elbow. You haven't declined any food that I have offered you yet.

We are currently having a battle over changing diapers. I want to get you changed and dressed, and you want to flip over and crawl off the changing table. You are not happy when I flip you back over, but we've negotiated and it seems to be working out that I change you first, and then let you flip over for a minute at the end.

Naim, you are a trip. I can't wait to hear what will come out of your mouth when your vocalizing starts turning into words. But I'm so happy with you right now, I hold you when you put your head on my chest smile, and I wish the moment would go on forever.

  I didn't get my double smiley twin picture that I wanted, but perhaps that was too much to ask? (I'm lucky to have gotten Naim at all!) Instead, I got a portrait in time of both my guys as they are; a wonderful time that will never come again.

Three More Weeks!

D has been moved to the rehabilitation hospital. I went to see him and attended his "Interdisciplinary Meeting" the other day. Its a pretty nice place and the people are pretty knowledgeable. It is a hard position I am in, though, because I don't think it is necessary for me to go around and say, "Hey everyone! This foot bullshit is not my fault! He lied to me and blew me off about it for weeks!"  But I also don't want them to think that I'm totally an asshole who completely neglected him and just didn't help him take care of his skin. He is seeing a psychologist up there and I know that he has told her that he is responsible for what happened, but I don't know if that info gets filtered out to the rest of them. I guess I shouldn't worry about what they think. I said in the meeting that my concern was that he get help in setting his priorities and organizing what needs to be done and delegating better what he can't do himself. He told the O.T. this as well, because she brought it up as well. So I think its ok. Rehab staff are usually pretty laid back and easy going about this stuff. I don't want him to feel guilty and blame himself every time he looks at his foot (or lack thereof) but I do need him to get a handle on this stuff and take care of it (by directing me or another attendant if necessary) because I'm not about to strap him down and demand that he show me his skin for inspection every day.

Anyway, the kids can visit and they did. He has a bed that is sort of like an air mattress with circulating air. I let the kids crawl around on it and they just loved it. It's kind of like a mini version of one of those things at amusement parks that kids take off their shoes and get in and jump around. (Okay, I have no idea what those are called or how to describe them.) All the P.T.s and O.T.s and nurses, etc. had to come in and look at the babies. They both seem to need a few minutes to warm up to D, and then it is like something clicks and they remember him, so we had a good visit.

The bad news is that at the meeting they decided he will be in rehab for at least 3 more weeks! Ugh. Well, maybe its a good thing. He needs a nice, thorough tune-up.

There are a couple of pictures of the visit added to the album.

Good Intentions

I came across the post "Good Intentions" at this woman's work. She says eloquently what I've been thinking about parenting in the last few years. When thinking about my own childhood and my parents and their inadequacies and the scars they left. Now that my father stays with me sometimes, it all comes back to me. I can honestly say that my parents had good intentions and did the best they knew how. It's not that I had a horrible childhood, I had probably a pretty average one, but there are holes and scars that I've had to stop blaming them for and just accept as my own faults to deal with.

As I entered into parenthood, people wondered how I could possibly do it. I am not below poverty level but I would be considered "low income," I am not married and my partner has a serious disability and is probably slightly above poverty level as well, then, of course there are those that think that my children are "fatherless" because they don't have a biological father in the picture and their adoptive father is not the "live-in" model. The fact that I have a disability and I can't drive has also been an issue of concern. I heard this statement a lot:

"Don't you want to give your children everything?"

I answer that it depends on what you mean by "everything." They usually say something along the lines of giving them access to the best schools, the best opportunities, the best clothes (so they won't be made fun of at school), the best extracurriculars, etc. No one can give their children these things. This is a myth of a consumer culture. The average family cannot give a child access to the opportunities that say, a Paris Hilton has or a John F. Kennedy, Jr. had. Does this mean you don't want what is best for your child?

I of course want to give my children adequate food, shelter, clothing, and educational opportunities. But the best? Everything? This I cannot do nor should I, and neither can anyone. I want to give my children everything in these terms: I want them to be loved, feel unique and special, find and nurture those gifts that they will discover about themselves and deal with the challenges of their struggles. I want to love and accept whoever they turn out to be. I hope that I won't make stupid mistakes that will give them lifelong hangups and insecurities. I hope that I guide them into making good decisions about themselves and others that reflect their confidence, judgment and generosity. I hope to give them opportunities to meet and form good relationships with a variety of people, to learn how to give to others without being taken advantage of. Do I want to do everything and give everything I have perfectly? Yes. Will I? Sadly, no.

I can only hope I don't screw up too badly. And when I do, that I will be forgiven and that my good intentions and love will see us through.

For My LBGT Buds

I've had a few gay and lesbian acquaintances in the past, but since starting this journey into motherhood, I've met so many lesbian women who have created families in a number of ways. A lot of the readers on this site are lesbian women, and I'm glad you are here. I feel connected to you, partly because of the "alternative" ways that we have started our families and partly because I identify with some of the discrimination that you must feel.

I don't pretend to be an expert on gay/lesbian issues, so I apologize if I say something stupid or ignorant, but this just occurred to me lately. As a mom with a disability, there are some people out there who think I'm a terrible person for deciding to parent. I looked into adoption first, and found that there would be many more roadblocks in my way than if I went the gestational route. And when I was pregnant, total strangers actually came up to me and told me I wouldn't be able to raise my kid(s). Now, some people say, "Well, it's easy when they are babies, but what about when they learn to walk?" And after that, it will be what about when they ____, and what about when they ____? There are thousands of parents who are disabled and raise healthy, well-adjusted kids. But I think that it must be similar to being a gay parent. Thousands of people have done it successfully, scientific research can prove that it can be done just as successfully as traditional families, you yourself can point to your loving, smart, wonderful, happy child and say "Look at my loving, smart, wonderful, happy child" and there will still be people out there who will say that you are not good enough. That it is wrong for you to have become a parent. That your child would be better off being raised by another kind of family.

I don't know if gay and lesbian's feel this way, but I have a dim, but constant nagging fear in the back of my mind that my children will be taken away from me for something that would be considered a normal occurrence  in another family. There will be a time when one of my sons will break a leg, or bang his head on the cement and need stitches or some kind of accident that kids have. I fear taking him to the hospital for that some social worker will think that he was hurt because I couldn't see well enough to supervise him. [Edit: Example story deleted by reader request.]

My friend Niklas, who is a blind parent, told me when I was pregnant to be very careful. He said to make sure I demonstrate in the hospital that I can take care of them. He said to never refuse anyone from the state or health care agency to come and take a look at your kids. He said to get as many people in the child development profession into your home as possible to see you with the kids so that if anything happens, such as an accidental injury, you can have a lot of professionals on your side.

At first, I thought he was being a bit paranoid, but then I witnessed this problem for myself in the hospital when I gave birth. I had been very ill for about two weeks before giving birth. I had a surgery and lost some eye sight. I was really FAT and had gained 45 pounds. My pelvic bones hurt so bad I could hardly walk. And I was on bed rest anyway, so I was weak from that. I also had some blood pressure problems due to preeclampsia. Needless to say, when I went in the hospital for my C-Section, I was not at my most together and healthiest. My babies were born at 35 weeks, so a little premature and a little bit underweight, although healthy. In the six days that D and I spent in the hospital, Aaron got jaundice and Naim lost over 12% of his birth weight. Naim also had problems with hypoglycemia and he had no sucking reflex. This baby did not have a clue what to do with a breast or bottle in his mouth. We would squirt milk into his mouth and coax him to swallow. He would only drink a few milliliters at a time before he would just fall asleep. We fed him every two hours. Meanwhile, I'm pumping and trying to get Aaron to latch on.

Nurses, Lactation consultants, dietitians, pediatricians all tried to help get Naim to eat. Everyone struggled with it and although we tried different techniques, nothing really seemed to improve the situation. Then one night I got this nurse who insisted that I feed him every hour. Another doctor had told us earlier that Naim had an over-stimulation problem and was burning up more calories than he was getting by being forced to awaken and eat so often. She suggested that we feed him every two and a half to three hours. This nurse and I argued over this and I think I said something to the effect that it would help Naim and the whole family (me and D) out to feed him every three because we were burning out and it was bad for our health. (BIG mistake to say. Never let 'em see you sweat. But I was crashing and burning BIG TIME at that point.) Well, by morning, we were told by a bitchy little CNA that everybody on the floor is saying we can't feed our kids and if we weren't so selfish we should give them up for adoption.

I cried and cried over this, but for the next two days I rallied and didn't let anyone help with the feeding or care of the kids. D and I did it all ourselves, even though we had gotten almost no sleep in days and days. Finally, Naim stopped losing weight and they discharged us. Within about three weeks, Naim slowly learned to suck and started eating more and more and putting on weight. I don't remember much of this time because I was a sleep-deprived, delusional, crazy woman then.

Anyway, we went home from the hospital with appointments with the county health nurse, a WIC dietitian, and an enrollment in "Healthy Start." All of these women have been in my home watching me with my babies numerous times. They are helpful, nice women, but I don't really need them. Their main purpose, although they don't know it, is to be on my witness list should a problem ever arise where someone thinks I can't raise my children.

I will eventually write more about my career as a teacher, etc. But for now, I'll give you a brief overview of my experience with children. I babysat kids since I was seven years old. First under the supervision of my own babysitter, and then on my own. In college, I found a niche to pay the bills by working for respite care services and taking care of children with disabilities, including children who were on respirators, were blind, deaf, etc. Also in college, I had to do semester after semester of practici and student teaching for my bachelor's degree in education. Then in grad school, again I did several practici with students with multiple disabilities and challenging behaviors and worked as an adviser for adults with cognitive disabilities. In Oregon, I substitute taught for a year in a variety of classrooms. I also volunteered for three years in the pediatric oncology unit at a children's hospital providing child-life therapy services to children. (And I never tripped over or pulled out an IV!) In all those years of taking care of hundreds  of other peoples children, my safety record is perfect. I've had not one kid get injured in my care. I've had a couple of minor scrapes and bruises, but absolutely no serious injuries requiring the school nurse, the doctor's office, the ambulance, or the coroner. None.

And do you know what that means? Absolutely nothing. This is the thing about being a disabled parent and maybe a gay parent as well (but in a different way), you can build no track record. You cannot prove yourself. You always start at 0. Because some people will always think that a white, middle class, non-disabled heterosexual married man and woman who made babies by having missionary-style sex can be better parents than you. Not one of a million other factors will ever come into play in their minds. Anyway, that's why I draw strength from you ladies. You had your own confidence and went ahead and did it anyway. You are my lesbian sistahs! And your little ones are my little nieces and nephews, and I'm inviting you all over for a SUPERMOM play date!

Quick D Update

I went to go visit D today. They took him out of the burn unit and now he is in the regular hospital ward waiting to get the staples out of the foot they grafted and go to rehab. So still don't know when he will be out. If he is in for 30 days (and its already been, like, 18) I lose my CNA money for the month for caring for him. Even though I've still gone over to his apartment and have cleaned infection off everything, feed the cats, get the mail, I'm getting the carpet steam cleaned, etc. Oh, well.

The good news about him moving over to med/surg is that the babies can come visit him. I don't want them in the hospital too much because hospitals are horribly infectious places. But today I took Aaron up while Naim slept in his car seat with my dad in the hospital lobby. Aaron sat in the bed with D and was fascinated by the mattress (an air mattress with a pump that adjusts the air pressure based on movements). D played with him and he laughed and laughed. He has a more normal, cute baby laugh now. For a while there, he had more of a beavis and butthead grunt of a laugh. Made me worry for a minute, there! D says my pictures don't do Aaron justice, and I think he is right. Aaron is just an easy-going, very smiley baby. He smiles all the time and it can just light up the day. But every time I hold a camera up to my face, he clams up and gets a serious, confused look on his face.

I wanted to show Aaron D's foot--or lack thereof--but I forgot. I wanted to see if he would notice or not. The foot is amputated just a few inches above the ankle. It looks exactly how you'd expect it to look, but whenever I look at it, my eye or my brain seems to complete the picture of a whole foot in my mind. It's weird. It seems like I shouldn't be able to pass my hand through the space where his foot was.  I guess it will take some getting used to.

This seems like as good of time as any to explain D and my relationship/living situation. In brief:

We met in 1994 when the University of Kansas accidentally assigned us the same university housing space for people with disabilities. (They put us all down in the basement together.) We lived there together for three years and I served as one of his attendants. I dated his older brother, Q, for a bit. D and I became good friends.

In 1997, D decided to transfer to Oregon State University. He did so at the urging of his brother, M, who lives out here, because of the weather, and because Oregon is a Medicare Waiver State. (That is when a person dependent on attendants can get the medicare money to pay them rather than that money being used to place them in a nursing home. More on that some other time.) I came out to help him get settled for a few weeks. I really liked the Northwest so I went back to Kansas, finished my master's thesis, and moved to the Portland area later that year. He lived in Corvallis and I lived in Portland and we saw each other on weekends and continued to call each other nearly every day.

In 2000, D took an internship with Sequent Technologies in Portland which was soon to be eaten up by IBM. D lost his job during the IBM merger. He had a few credits left on his degree. Shortly after that, I lost part of my grant-funded FTE at my job at a Medical Center and D and I decided to move in together to save expenses and so I could again work as his attendant.

Then began our series of tragedies and crisises. In 2000, I had five surgeries on my kidneys for kidney stones. In 2001, D's mother had a benign brain tumor that was operated on and took several months to rehab from. In 2002, D became deathly ill for months with a decubitis ulcer and a serious MRSA infection. This took around 8 months of intensive medical care and hospitalization to heal from. Virtually immediately after D's illness, my mother was diagnosed with a terminal brain cancer and died in 2003. In 2004, I became pregnant with twins (good, but medically complicated and scary) and I had a retinal detachment and lost my vision in my right eye. Oh, and D fell and broke his leg in three places. Now here we are in 2005, and D gets his foot cut off. (You can see why I was so angry with him. I wanted some relief from this stuff and he went and got sick almost on purpose!)

But let me back up a bit. In late 2002, I missed a lot of work because of D's illness and my mother's illness. I was not picked up on any new grant projects at work. (Also due to W's administration cutting a bunch of educational and research funding.) I continued to work for them as an outside contractor until 2004. Prior to her death, my mother wanted to buy a house out here and perhaps live part-time and retire out here. After she died, my father bought a house out here. When I became pregnant with twins, I really worried about the space and stability issue with the apartment that D and I were sharing. So I made a deal with my father that I would move into the house and pay all the expenses. (utilities, taxes, insurance, etc.) So I am a renter and have the upstairs to myself and the kids. My father has a bedroom downstairs and lives part-time here, and part-time in Kansas.

This house is not ideal for D. He can get into the bottom floor by going through the garage, but he only really has access to the kitchen and living room. He moved into a smaller apartment that is about 3 blocks away from me. This is not an ideal situation for us, even though I get to live in a nice house for below market price, ideally we would have our own place somewhere that he has total access in.

So what is my relationship with D? I don't have a word for it. Well, the best I can do is he's family. He is my partner. We can't get married or he will lose his medical insurance and Medicare Waiver. (Gays aren't the only ones who can't get married...Lots of disabled people can't, either.) We've been together for 11 years now. I dated other men during that time, but my relationship with them was never as good as it is with D, so slowly I just sort of quit dating. We plan our lives and our goals together. Our extended families treat us as partners. I have been called his wife, his girlfriend, his "special friend" (eeww!) his Significant Other, his "caregiver" (double eeewww!), whatever. I don't care anymore. It is what it is and it works for us.

I don't know how long we'll stay in this living arrangement. There are things I like about it and things I don't. I'd love for us to maybe be able to move out of Portland to a college town or smaller, more rural town like Corvallis. But I have a need for public transportation and he has medical needs, so we can't go too far away from a big city. I like Portland a lot. But being from the Midwest, I miss the open space and land, too.

I will tell the story of how he became the father of my children another time. I'm getting tired now! This quick update turned looong!

A List of the Embarrassing Songs my Boys Have to Endure their Mother Singing

I can't sing. I suck. I mean...it's bad. I always wished I could sing, I wanted to be a rock star when I was 11; but thank god it was not to be. But some crazy maternal hormone makes you sing to your kids. And some crazy homing device implanted in the newborn brain makes babies want to hear their mothers sing more than anything else. So I sing to them as they lovingly look into my eyes as if I am Sarah Brightman with the added bonus of an attached trough for them to eat out of. The paradise that is sitting in mommy's arms whilst she sings and feeds you. Someday they will realize that milk comes from cows and mommy shouldn't sing.

But what is more amazing than them enjoying my crappy singing is the songs I sing to them. Stuff from my childhood that I haven't thought of in years, that I didn't even realize I knew the words to, comes out of my mouth in all of its off-key glory. Here is a list of their favorite mommy songs (with links to lyric):

Annie's Song--John Denver

Top of the World--Carpenters

Keep Feelin' Fascination--Human League

Angel--Stevie Nicks

Sarah Smile--Hall and Oats (A Naim fave.)

Ain't No Mountain High Enough--Supremes

Puff, the Magic Dragon--Peter, Paul & Mary

Sweet Child o' Mine--Guns 'n Roses (We change the "she" to Aaron in the first verse and Naim in the second. Aaron's Fave.)

Dream On--Oak Ridge Boys (This one I blame on my mother.)

Amanda--Waylon Jennings (This one I blame on my father.)

Baby, Baby--Amy Grant

Now that I Found You--Alison Krauss

One Love--Pat Benatar

Don't Dream It's Over--Crowded House (This song came to me when I was pregnant and, well...some people were mean to me. The kids still like it.)

Sentimental Lady--Bob Welch

How's that for lamely eclectic? Anyway, I know the words to these songs for some reason and they are guaranteed to bring on smiles or sleep in my guys. How 'bout you all? What works for your little ones?

Goodbye, Mara and Jats!

Friday, August 12th, was the second anniversary of my mother's death. She died at age 55 from a brain tumor, glioblastoma multiforme. My mother came out to visit me for a week, then died the day after she went back home to Kansas. A few days before she died, we all went to the coast and I can honestly say that I think it was a great day for my mother, and that it was probably her last great day of her life.

 

Last year and this year on August 12th, my father and I have sort of loosely recreated that day by making a trip to the coast. This year, we took the kids and I also took the ashes of my guide dog, Mara, who had died last year. Her ashes have been sitting in a box on my desk waiting to be put in the Pacific. It was by far her favorite thing to do as a yellow labrador to go running around on the beach, splashing in the ocean, and chasing after birds. So I went up to a cliff at Ecola State Park and spread her ashes out down the cliff.

 

 

Then just today, I had a message on my machine that my good friend, Niklas, who I met at Guide dog school in 1993; his dog died this weekend. Jats was a black lab, and only a few months older than Mara would have been. So it is kind of the end of an era. Single Lisa with a guide dog is gone. Mom Lisa who gets more attention for having twins than for having a dog is the new reality.

Nik and I have kind of planned to get new guide dogs together after ours were gone. I hope we can still do that. But right now I don't have anyone to watch the kids for the required four weeks of training and two babies and a dog seem like a bit much right now. So we'll see what happens. I don't know if Nik will want to wait that long.

I do OK without a guide dog. I can use a cane at night and travel with the stroller pulling behind me, but we really don't go out much at night anymore. We are sleeping! Mara helped me the most by just keeping me more aware of my environment; alerting me when people were approaching and being kind of like an extra sense. When she died, it was as if someone had chopped off my left arm. I felt like half of my surface area and the volume of my body was gone. In a way, it was harder than my mother dying. I think it is because I didn't see my mother every day. I mourned the future grandmother for my kids when my mother died. When Mara died it was like a part of me dying. The babies have been quite a distraction from all that. But I think I'm getting used to it.

My mother's sister, my aunt Gail called me today. She has been really supportive of me and the babies and of D, also. She is pretty laid back and non-judgmental. It was nice to hear from her. I'm trying to decide if I should share the blog with her. I don't know if she really wants to read all of my drivel but she might enjoy the pictures of the babies.

It's Twins!

Absolutely panic-stricken.

That is what I felt when I found out I was having twins. People ask me this all the time. Was I surprised when I found out? No, but I was deer-in-headlights, sick to my stomach, dizzyingly, head in my hands in fear, panic-stricken.

Doing the kid thing in general was a huge jump off a dark cliff into the abyss of the unknown for me. I will backtrack and get to that part of the story later. But although I did use Intrauterine insemination, and I did take a very small dose of clomid prior to my cycle in which I conceived; I had a pre-insemination ultrasound of my ovaries done a day prior to the IUI. This was in part to make sure I was ovulating, and also to make sure that I would not have multiples.

One egg. ONE. ONE EGG! was waiting and ready to go.

"No multiples this cycle," my Reproductive Endocrinologist reported. Great. On April 15, 2004. D and I go downtown. He takes a statistics midterm while I sit in Seattle's Best Coffee, then we go get me knocked up.

Eight days later, I'm swimming laps in the pool at my gym, and I feel weird. I know I'm pregnant, but I don't believe me.

Fourteen days later, the first day I'm allowed to test, I get up at 5:30 and pee on the stick. It is ever so slightly blue. I go wake D up by shoving the stick I just peed on in his face and shouting, "What do you see?!?!"

After a few minutes of squinting and turning on lights and holding the stick up to the window, he says, "I don't know, it is kind of blue. Can you be kind of pregnant?"

I read the directions 200 times. The part where it says, "Any shade of blue is an indication of a positive result" resonates in my mind. But--a little back story here--I have kidney disease that makes my pee do weird things to test strips. I had to do the clomid and also have an HCG injection because the ovulation test sticks you are supposed to use when you do IUI indicated that I was always ovulating EVERY DAY OF THE MONTH. This is why I had to have a pre-IUI scan. So, I'm thinking that this could be happening again, or maybe its the HCG shot. I can't possibly be pregnant. Those things just don't happen to me.

So I go to the drug store and buy five more pregnancy tests. I took another one that afternoon. Blue. Over the next four days I take one test every morning. Blue. Darker Blue. Even Darker Blue. Even More Darker Blue. Even More Darker Blue Than The Control Line Blue. Each day I lay them out on the bathroom counter and go back in to stare at them 28 times a day in disbelief.

Finally, I get up the nerve to call my Doctor. "I think I'm pregnant," some foreign voice that can't possibly be coming out of my mouth says. I have to come in for two blood tests three days apart to confirm.

First test: HCG Level over 4000. "That's awful high, isn't it? Aren't those numbers indicative of multiples?" "No, no, no," I'm reassured by the nurse. "All women are different."

Second Test: HCG Level over 10,000 and I'm less than five weeks pregnant. "My GAWD!" I gasp, "I'm all kinds of pregnant. Isn't that a sign of multiples? Could my one egg have split?" "No, it doesn't mean multiples." says the tech. "We'll just have to wait and see."

At five weeks, I go in for my first ultrasound. Now picture it. I'm visually impaired and in a dark room. I'm lying in the ever-so-dignified "stirrup" position and for some reason that escapes me now, I only had one hearing aid in. D and the doctor are both down at my nether end looking up at me and the screen which I can't see. I'm all uncomfortable due to the fact that I'm nauseous, I can't see or hear what is going on, and, oh, yeah, there is a gigantic protruding ultrasound transducer being whipped around in my vagina like the guy is drilling for the last bit of peanut butter out of the bottom of the jar.

I hear the doctor say, "there's the first one." And I hear D say, "The first one? you only found one, right?" And the doctor says, "so far." What? What! So FAR, how big is it up there, you've been going after that peanut butter for, like, ten minutes now.

Then there was more talking that I didn't hear. Then I heard static coming from the ultrasound machine which slowly morphed itself into a heartbeat. It took me a second to realize...that is MY BABY'S heartbeat! Oh, MY GOD! For the first time, I actually believed I was pregnant.

I forgot about "So Far" because I was so elated over the heartbeat. The doctor  continued talking and poking and I couldn't keep track of what was going on. Then all the sudden, I heard it again. The Heartbeat! Only for a few seconds. Way too short of time. Then slowly I came to wonder if this was the same heartbeat or a second one. I heard in D's voice that he had some anxiety but I wasn't sure what they were saying. All I wanted to do then was to get this over with and sit up and find out what was going on.

When I was allowed to sit up, the doctor and nurse were all smiles and with congratulations, while D looked pale and like he was fake smiling.

"TWO!" The doctor said. "Congratulations!" said the nurse. "Great Job!" They both said as if I had worked extra hard to ensure that two sperm found eggs on purpose.

And then they walked out of the room and I burst into tears. This was bad. This was very, very bad. I have kidney disease. A single pregnancy was high risk for me, what would my body do with two? Would I miscarry? Would I go into kidney failure and die? Would I deliver them prematurely and they would die? Would they be born with severe disabilities? Would I be able to handle two children as a deaf/blind woman who cares for a quadriplegic? Would I be able to afford two?

The nurse gave me a printout of two little circles that were to become my children. She told me to keep the news quiet for a while because many times one twin won't survive the first few weeks. I was a weird combination of relieved and worried when she said that.

I stared at the picture all the way home and cried while D just drove. I'd taken a huge risk in becoming pregnant. I'd had surgery to remove cysts, there was questions on whether I would even be able to get pregnant at all, and now I'd done and gotten myself pregnant with twins. How the hell could that have happened? I felt like a terrible, irresponsible person.

For about three days, I brooded and cried and brooded some more. I was in a terrible state of depression for about a week. I just thought over and over that I couldn't handle this. I can't do this. My mom died the year before, my sister is far away and no help. Who knows what D's family will think. What if I die and the babies live? What if I should become more disabled upon going through the pregnancy? What should I do?

I thought about abortion. (Hate mail cometh.) My opinion about abortion before this was that I never thought I would have one. I certainly didn't approve of abortion as a form of birth control to be used repeatedly in lieu of other means. But other than those thoughts, I avoided the subject. When I was put in this situation where my body might fail both me and my babies because of the extra burden of twins, that all three of us could die or become very ill, I suddenly WAS SO VERY GLAD I LIVED IN A COUNTRY WHERE I WAS FREE TO CONTEMPLATE THIS DECISION MYSELF. Even though I had already heard the heartbeats and seen their little miraculous little beginning circles of life in the ultrasound picture, even though I already loved and cared about them, their well-being was completely intertwined with my life and my body. Pregnancy, I have found, is incredibly hard work and taxing on the mother. Although you can say life starts at conception--and I think it does--those lives are on total life support and the mother is the life support machine, so to speak. My perinatologist once said when I was worried about the babies getting enough food because of my morning sickness, that the babies are parasites, they will take whatever they need from the mother. This may be an ugly way to put it, but every day of my pregnancy was a difficult sacrifice to help my little guys stay on life support. I can't imagine anyone else being able to decide for me except me that I have to make that sacrifice.

In the end, the fact that I COULD consider abortion was the very thing that helped me decide, "YES! I want to keep these babies. I will do whatever it takes to keep them alive. I will sit for nine months in the hospital on bed rest, I will go on dialysis, I will have a kidney transplant, I will eat spinach and liver everyday, I will pee in a jug and have my kidneys analyzed every week, I will make arrangements for adoption if I become to ill to care for them, I will do whatever it takes." Given the choice to do this or not, made me be able to decide without a doubt that I would and could do it.

I also mulled adoption for a bit, but that is a story for another time. The end of this story about the twins is this:

Every single day, every moment of the day, from the time I wake up till the time I go to sleep I thank God, Jesus, Mohammad, Buddha, the Dali Lama, Sai Baba, the higher power, the holy spirit, the North, the South, the East and West, the sun, the moon and the stars, the take your pick, that I have these children. I cannot imagine having one without the other, I could not pick between them if a gun was put to my head, I have been blessed beyond measure because of my Aaron and Naim in my life. I don't feel guilty that I was scared of having them, I'm glad I went through that so I can see how far we've come, how we rose to the challenge, and how beautiful the result. I CHOSE to have these guys. And it is far and away the best decision I've ever made in my entire life.

P.S. My kidneys made it through the pregnancy, but my eyes took some serious damage. More on that later, but still...I'd rather be deaf/blind and have them that be totally able bodied and not have children at all.

Butterfly

For some reason, when I moved to the Northwest I noticed that there are hardly any bugs here. I don't know why. I'm suspicious. I wonder if it is some kind of environmental pollutant that comes out of the silicon forest. Although I don't miss the ever present cockroaches and mosquitoes of the Midwest, I do miss the ladybugs, box-elder bugs, and especially butterflies. I don't think I've seen one for years.

This evening, Grampa Fred and I took the kids and the dog out in our small backyard. The kids were cranky and tired at the end of the day, the dog was barking, and my dad was probably about on his ninth hour of endless TV watching (an area of extreme controversy in our house.) As soon as we went outside, the kids became calm and peaceful. We all sat in the grass and squished our toes around while my dad threw a tennis ball around with Abbey.

I was looking at Aaron and he raised his arm off to the side and looked over and smiled. At first I thought he was "seeing dead people," but then I noticed a little white butterfly fluttering around the bushes. I swear that is the first butterfly I've seen since I moved here 8 years ago.

I'm just beginning to develop the garden out in the yard this year, but maybe the saying is true. If you build it, they will come.

Incidentally, we saw the butterfly at the time that D would have been having his surgery. (Which seems to have gone well, by the way). So I think it was a good omen.