Twinkle Little Star

Well, I Feel I Need a Little Sympathy--Stevie Nicks

First of all...Did you know that they now have JUMBO M&M's? More chocolate on the inside? Did you know that I thought of this idea when I was five years old and have been wishing for it ever since? If I would have marketed this idea in 1975, would I be a millionaire now? But that is not why I'm being all whiny right now and eating too many damned JUMBO M&M's.

The kid's are in a program called "Healthy Start," which is like Head Start for infants but based on risk factors, not entirely on income. They qualify because I am a single, lower income disabled mom and they were preemie twins. An early childhood specialist comes once a week for about an hour and works with them and is supposed to support me in being a good parent. I don't know how much I really need this service, but my blind parent friend, Nik, told me to never turn away professional people who want to see me with the kids because they will be my witnesses if there is ever a question of my disability preventing me from parenting. I really liked the woman that has been coming, but she is finishing up her last semester of grad school and had to reduce her hours and thus dropped me from her caseload. So today I got a new person, and she started off by going through sort of an intake questionnaire and asking me everything about my life.

I got around to telling her about the situation with D's foot. How he was in the hospital for seven weeks, and how now he is home and so I go over there and work, but he has not been able to come to my house and help me out because he is still recovering and trying to get a lot of things taken care of in his life; which I highly support. And how it has been 151 days since I've had a break from the kids. (She actually figured this out, real quick like in her head. I luv anyone who can do the math. So I don't have to). I have not had a babysitter in 151 days. There has been no time in the last 151 days when I have not been responsible for the children. Sure, I've had 20-30 minutes here and there when my dad would (heh, sort of) keep and eye on them while I was still in the house (Dad Doesn't DO Babysitting), and I've had a few hours after they go to bed (like now), and they spend a few hours a month in the nursery at church, but I have had no breaks and have been taking care of them for 24 hours a day, seven days a week, for 151 days. And counting.

She acted like people would be rushing to my aid with D in the hospital for so long. Nah, I said, too many accusations have been flying for that. D and I are past what happened with him sort of concealing his injuries from me, we are working things out. But I have to tell you, what he did was really, really hurtful to me for a while there. I know it wasn't an intentional thing he did to be cruel to me. It was more like some MAJOR procrastination and letting things slide out of control. But I felt like we were working together towards something; towards making a good life for the kids and being responsible adults. I mean, when I have to get up every morning and feed the kids and take care of them; I cannot let myself be sick, I cannot let things slide, I cannot forget to pay the bills so the electricity goes off, I cannot forget to make the formula, I cannot stay up all night and sleep in all day, I cannot sit and veg in front of the TV, I have to keep all of my shit together-- filed and alphabetized. I thought we were both doing that, and then this foot thing happened, and it was like...whoa, the kids are motivation enough for me but not for you? I thought we were in this together. So, even though we are working through this, it was a hurtful time.

The Healthy Start teacher had all kinds of sympathy for me. And I realized, this is the first time someone said to me (except for some comments from y'all great readers) that anyone has said, "How are you doing with all this?" "It must be really hard for you." or "Is there anything we (at Healthy Start) can do to help?"

It was really nice of her. But it made me think, "What? The only person that will ever give me warm fuzzy huggies about such a trying time is doing it because its her JOB? Everyone else who is close to the situation (and really, by everyone, I mean only a few people) does their usual thing. Blaming the caregiver for the illness. When you love someone so much and you have devoted eleven years of your life to loving and caring about that person, and even a few times, sacrificing your own needs and desires to save his life--for someone to say you caused him harm or that you didn't do enough to prevent it is just heartbreaking. I knew that this would happen when I found out the severity of his injuries (the day he went to the ER) which made it all the more painful that he would let himself slide into this situation and put me (and his home health nurse) in such a vulnerable situation for blame and finger pointing.

I have to step back from getting support from D because he needs time and energy devoted to working this problem out. And I'm okay with that. But it doesn't make it any easier that he is too busy to deal with the flying accusations from everyone (and by everyone, I mean about two people) and it is hurtful to me that I get no sympathy from anyone about this. Waaa, Waaa.

There was this study that we did at a previous university that I worked at where we studied the social lives of people with disabilities. We asked disabled people and non disabled people to fill in this worksheet which had several concentric circles on it. The innermost circle was to be labeled with yourself and your closest family members. The next circle was close friends, extended family. The next circle was casual friends and acquaintances, the next circle was business or career contacts, and the outer circle were those that got paid to provide you a service (such as your hairdresser or your accountant.) The non disabled people mostly had a pretty balanced set of circles with several people listed in each ring. Most of the people with disabilities had the first circle filled in with themselves and maybe one other family or friend, and then the circles in the middle were blank or sparse. The outer circle had the most people in it by far. Those people that are paid to provide a service for you. these people were social workers and medical staff and physical therapist and paid caregivers. All the people that are paid to give assistance to your life. It was sad that people with disabilities were so excluded from the middle rungs of the circle. From the friends, extended family, and acquaintances, the colleagues and the neighbors, the people who are the main part of life.

Anyway, this experience reminded me of that study. Sometimes, D and I are there. Only dealing with each other and the outer circle of paid service workers because, despite our best efforts, sometimes not a lot of other people want to take the time to really understand our situation or deal with us.

I've always thought that disability can be kind of a filter. People who take the time with you usually really want to genuinely be with you with no ulterior motives. So that's nice in a way.

Anyway, I don't think that I really need that much sympathy anymore. D and I know who we are. We know us. He knows I'm not responsible for his illness and I know that he is working to make some changes. That should be all that matters. On a happier note, we had a wonderful special visitor this last weekend. I forgot to ask her if I could blog about her (my new policy) so I can't tell you who she was. But, she was just a bright, funny, wonderful, rational, sane, understanding light and I wish she lived in the same town. So, really, there was the healthy start lady and this visitor and some people at church, and Nik and Kory and some of you here who have said nice, supportive things about my situation. So that is more than two people and those people are who I should focus on, right?

Right.

AAAAAAAHHHH, The Quiet

The babies just had their baths and bedtime bottles and are in bed. My father left this morning to return to Kansas and when he goes, Abbey goes. So for the first time in two months I'm enjoying the quiet in this house and it is not even past midnight.

Grampa Fred is a trip. He's annoying as hell and I really enjoy having him here. Well, most of the time. He watches too much loud TV, he lumbers around the house exclaiming things with no particular context:

Fred: "Did you know that?"

Me: "Know what?"

F: "That guy that worked with the horses got put back upstairs."

Me: "What the hell are you talking about?"

F: "You know the guy, the GUY. The Guy Brownie Guy who worked with Arabian Horses. W. won't fire him but he put him back upstairs."

Me: "Okay, you mean the FEMA guy? Michael Brown? What happened to him?"

F: "W, that bastard. W replaced him but didn't fire him. He sent him back to Washington. W. That Bastard. Only 18% of people think he screwed up. Dumb sonsabitches."

Me: "Huh?"

F: "You better get these bottles in the dishwasher. I ain't gonna do it anymore."

My father is very intelligent. He is well read. But he probably has learning disabilities. He definitely has a bit of aphasia. He knows what he wants to say, but can't think of the words. My family has gotten very adept at what we call "Fredspeak." D can't understand a word he says. He also tends to mumble. And when you combine my hearing with his Fredspeak and mumbling...Well, lets put it this way, I mostly ignore 95% of whatever it is that comes out of his mouth.

But he doesn't care. He's a weird combination of very laid back and extremely uptight. He has what I call the "Nanocrisis." I mostly ignore them, but to other people they can be quite alarming. You will be minding your own business and all of the sudden:

"Fuck! Goddamn sonofabitch. Fucking piece of Shit thing! God Damn it!"

If you are new to this, you think the world is ending. You rush to see what horrible thing has happened.

"Oh, I forgot to take this trash out with the rest of the garbage," he says in a perfectly calm voice. "I'll do it next week."

Crisis over.

Laundry, coffee cups, dishwashers, taking the wrong exit on the freeway, dog poop. These are the crises of my father's life. And in general, they only last seconds. Other than that, nothing much else bothers him.

The kids have really grown attached to him. Especially this visit when D has been in the hospital most of the time and they are getting older and more social. He is not into babysitting them for fear of the nanocrisis called Poopy Diaper. But he plays with them all the time. He was very excited to keep track of their crawling improvements and would have them racing each other down the hall. I'd worry about the competition aspect of it, but I don't think they realized that they were racing each other.

But I have talked to him about his use of the word Fuck and all of his other colorful language. I tell him that when the preschool teacher calls me up and says the kids are cussing her out because she brought them the wrong colored cup of juice, he is going to go down and conference with her about it. Not me.

He blows me off at the time, but then I do notice that he cuts the cussing and the nanocrisising in the days that follow. My only hope is that I don't have to retrain him every time he comes out to visit.

He helps me a lot when he is here. He mows the lawn, takes care of the downstairs housework, is usually always available to be the extra two hands I need to feed the kids or allow me to give one some extra attention. He has run me to the hospital countless times and sat in various hospital waiting rooms while I visit with D. He has run me on a thousand little errands and taken the kids in the stroller for walks. And never once does he say, "What are you going to do when I'm not here to do this for you?" He knows he's helping me but also knows that I will do it myself when he's gone. Well, alright, he does remind me 47 times to mow the lawn and turn off the sprinklers when the rainy season starts.

He is funny and aggravating and irritating and funny. Did I say he was funny? He is always making the kids laugh. The kids always go through a bit of withdrawal when he leaves as they get used to just me. In a way, it is easier without him here because I have just twins rather than triplets. (It's the dog, you see. She is in the exact same developmental stage as the twins. She gets into everything below two feet high and all of that everything goes directly into her mouth.) My dad does not supervise Abbey well, so I get triplets with two extra hands when he is here, and twins with just my own two hands when he is gone.

I look forward to him being gone when he goes, then I miss him a bit. Then I look forward to him coming back. And he IS annoying!

It is looking like D will be coming home on Wednesday finally after 7 weeks of hospitalization. He looks to be doing really good. I think he has taken the experience to heart and is working very hard on getting a grip on everything. He still has to do my one major request, which is to get another attendant (been asking for that for four years, now). I'm going to give him two weeks to get that in order before I go on strike or something. So  we are still working out the schedule or how this will work out again. But hopefully we can see him a bit more now, and the kids won't miss my dad so much.

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.

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!

We all learn the word "No!"

Today was a hard one for DW and Aaron. Aaron is now fascinated by DW's wheelchair. Now that he can crawl or scoot at least, he comes after DW which makes DW roll away. Finally I told him to stay put. It is more dangerous to roll on and have him chase you than to just stay where you are. I told him that this is as good a time as any to teach the kids the word "No!" I usually try to redirect the kids, but DW can't always do that from his chair so he needs to learn to use his voice to direct the kids. Aaron kept grabbing at the wheels and I told DW to tell him, "No! and push his hands away." After he did that a couple of times, I got Aaron's attention focused on something else. It is kind of sad in a way. The kids have lived through seven months of never hearing a negative or harsh word, and now the discipline starts and the limits are being set. The good side of that is that it comes with their independence. Aaron, who didn't move around much for a long time, is now mobile and he's getting a real adventuresome independent streak about him. And he is STRONG! I hate having to manhandle him away from something, but I have to sometimes, or every diaper would be in shreds. The "external gestation" period for Aaron is nearing its end.  As exciting as it is to see them develop each day, you kind of mourn the loss of the little babies they were.

Naim is moving along on his crawling, too, but is not quite yet as mobile as Aaron. He gets a little upset that Aaron can just take off and he can't.

DW is having some ongoing problems with his feet. Edema and pressure sores and infection. I've been pretty quite about it thus far, but last night was just the last straw. He came over last night and all I smelled was infection and necrotic tissue. It was disgusting and I didn't want the babies around it. Even my dad was pissed off about it, although he doesn't get it and thinks that DW just doesn't take showers. I wish! A much easier problem to solve!

A couple of years ago, I nursed DW for months through a long and nearly fatal bout with a pressure sore. The amount of work I missed from that, coupled with the discovery of my mother's terminal brain cancer that almost immediately followed his illness, caused me to lose my job. I was also hospitalized with an MRSA infection and my career ambition to become a Child Life Therapist was compromised. Tonight, I told him "No!" I will not go through that again. I will assist him, but he needs to deal with this before it gets any worse. He has to know that the kids are my priority now, and I cannot drop everything to help him anymore.

I banned him from my house until he gets well on his way to resolving this. It will be hard on me without him here four nights a week. He helps me get things done by watching the kids for me while I make formula, fold laundry, etc. All of us are going to miss him coming over. But what else can I do? I don't want the kids around that infection and stench, and I don't want to be his excuse for not taking care of it.

I will still haul myself and kids over to his place to work, however. I guess the kids will be getting a lot of baths in the next few weeks.