Twinkle Little Star

For the "C" Family

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

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

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

Not the Medical Post that Bliss Requested; This is Where I Rant and Stomp and Flail My Arms

ETA: You are about to read a very imperative shit fit that I'm required to have right now. Much as it may seem like I hate all health care workers, that is not true. We have truly had wonderful health care workers. Mostly nurses and therapists, but an occasional doctor, even an occasional egotistical arrogant asshole doctor that undoubtedly smokes crack in-between patients, but whose skills are teh awesome. Insurance companies, though? Yeah, we pretty much hate all of them across the board.

Over the weekend, D started getting sick again and had a fever. His nurse came over and found a VERY DISGUSTINGLY STINKY leftover piece of wound vac foam that had not been removed as it should have in some previous dressing change. It looks like psuedomonas.

So he is back in the hospital. This time, at the burn center again because they do the best job as far as controlling infection. The bad part of that is that the kids and I can't visit him there. kids under 12 aren't allowed. At it is clear across town and hard to get to anyway. I would have to find a babysitter to cover three hours of simply travel time. I'm glad he is there, though. They are militant about infection prevention. I get sick of the fact that he can't go into the hospital for long without risking that the hospital itself will make him sicker. Irony, no?

I have not been able to write coherently about the subject that Bliss requested: How medical people should approach people with disabilities. Because there is just so, so much wrong with it all right now. And it goes beyond people with disabilities and to just patients in general, especially those with chronic conditions. And then it goes to a systemic level in my head. Mainly I want to shake doctors and say, "Why don't you fight for us?" "Why don't you care for and value our lives?" Because they generally don't. The whole thing just blows up in my head.

D and I were discussing the fact that since his initial foot amputation, every problem after that has been contributed by or due to medical error or other external factors in the medical system that are beyond our control. To give you a rundown:

• In July of 05, D had terrible pressure wounds on both feet. Although he does take responsibility for the fact that he delayed in getting treatment for too long, a big part of the problem there was that a tilt-in-space seating system for his wheelchair was prescribed in 2002 to help his foot circulation. This would help in preventing pressure wounds in his feet and aid in healing. It took over FOUR YEARS for the red tape of Medicare to approve of that chair. He had his left foot amputated and a skin graft done on his right foot. He was hospitalized (sometimes in the BICU) for 3 months.
• In December of 05, he got the chair he needed, but it didn't work properly. Basically, it was a lemon. It took six months to get Medicare to approve repairs. In which time he used his old, stationary wheelchair. In January, his right foot had still not healed and taken to the graft. Although this is probably no one's fault directly, not having the proper wheelchair did not help. Also, the specialized air mattress that D needed after his foot amputations could only be rented by Medicare, and they only allowed for it to be rented for 10 weeks. Then they took it away. D went back in the hospital in Jan. of 06, and had additional surgery on his foot. He recovered in a nursing home, because we were not given enough funds for the amount of home health he needed at home. At home, this would have cost roughly $160 a day. His nursing home charges were between $700 and $1200 a day. Also, many nursing homes would not take him as a patient because he wouldn't turn a profit. So he did not have a choice as to where to go.
• He was hospitalized/nursing homed this time from early January to late April. During his time in the nursing home, he was not able to eat the high calorie/high protein diet that was prescribed for him. They offered things like plain, white bread with a piece of cheese and Bologna, tea, and a fruit or even just jello for a meal. His family and I had to supplement the food he ate in there almost daily. Furthermore, while in the nursing home, he acquired another pressure sore on his foot, and a very problematic pressure sore on his coccyx (butt bone). He left in April not having recovered, but because it was getting dangerous for him to stay in the nursing home.
• All summer of 06 was spent trying to heal the coccyx sore. He spent part of June and most of July bed-bound in his apartment in a makeshift bed that he made out of an old gel mattress, memory foam, and an inflatable overlay he bought online.
• In August, he had another skin graft surgery on the coccyx wound. He was hospitalized from August to November. All of these wounds were infected with MRSA or other bacteria, so each hospitalization required a PICC line and IV antibiotics.
• 2007 was a good year. No major hospitalizations or medical problems to speak of.
• In November of 2007, he was to go in for a routine surgery to change out his infusion pump as the batteries were running low. We were excited to get the new ($20,000!) pump because it would need less maintenance. According to the infectious disease dudes, the pain management surgeon should have started prophylactic antibiotics before surgery and also had D hospitalized a few days before surgery and prepped with a few days worth of antibacterial showers and betadine in isolation before surgery. None of this was done. No special precautions were taken due to his history of MRSA. In fact, every time he is in the hospital, they put a big fat sign on the door that says you need to gown, glove and mask before entering the room. I would say about one of ten medical personnel ever bothers to do this. The main culprits I see are the food handlers. Who go from room to room picking up trays, throwing the trays together that people have eaten off of and then going to the next room without even washing their hands. Once, D had a visitor who was a social worker from the hospital. She actually had to ASK what the big stop sign on the door was for. She thought that he just didn't want visitors. (When I worked at a medical school, I worked in a different building devoid of any kind of patient contact in an office setting. And we STILL had to take seminars and tests about universal precautions and infectious diseases. WTF?)
• After the surgery, D started getting sick and the wound didn't heal and was oozing goo. The pain management people treated it with antibiotics without culturing it.  They did not consult with Infectious disease. It was D who eventually had to do that.
• In January of 08, the pump literally started coming out of D's body. Pain management decided it must come out. We found out later that the new 'best practices' was to try to leave the pump in and put the appropriate antibiotics direction into the pump. Thus preventing baclofen withdrawal syndrome.
• Ah, yes. Baclofen withdrawal syndrome. No one warned us or told us anything about this. It was never mentioned. It can cause dangerous fluctuations in blood pressure, hallucinations and incoherence, autonomic dysreflexia, and it can disguise infection. Basically, you can easily die from it. D was sent home from the  hospital and within a day was incoherent and having hallucinations, incoherence, and fluctuating blood pressure. One night in particular, his BP was going from the 60/40 range to 240systolic over something I forget now. It just happened to be one of those nights when D had back to back to back visitors. First me, then Jason, and then his dad were all there and were very concerned. It was hard to have a conversation with him. He was short of breath. D's dad (with Jason, who is a nurse, on the phone) made the decision to call 911. I think that if people had not been there and taking his BP, he may have died that night. He was not coherent enough to make good decisions for himself.
• I had these absolutely crazy conversations with him on the phone for two or three days when he would talk a mile a minute and repeat everything multiple times and not really understand what you were saying to him. He got through withdrawal there with the help of Demerol, and came back home in a few days.
• He was much more coherent, but then the pharmacy (yea! for Rite Aid) called and said that the hospital had prescribed two drugs that were dangerously incompatible. The usual uproar ensued and new IV antibiotics were prescribed.
• Weeks went by and the antibiotics were finished but the open incision didn't heal. Goo upon goo was still leaking out of it. Pain management did nothing. Infectious Disease said the case was pain management's job. The wound people at crazy hospital A said it was infectious disease's case. Finally, D went to Hospital B's wound people. They put him on the wound vac.
• And here we are, pseudomonas in the wound and a strip of wound vac dressing discovered. Infectious disease saw him today after he called yesterday and said he was sick. They may have found more wound vac dressing stuck up in the wound. they admitted him to the Burn Center.

Still with me? Probably not, but this is more for me anyway. The thing is, even in this long list of events, I have left out a million little mistakes that were made with medication, communication, wound dressing stuff, treatment plans that contradict other treatment plans. People who don't have much contact with health care are so funny, it's cute. They act like health science is so exact and that mistakes are rare. And if there is a mistake, MALPRACTICE! I'm here to tell you that mistakes happen ALL. THE. TIME. Every single day. And I'm not counting bad outcomes from best guess judgment calls. I'm talking stupid mistakes. Most are unintentional, many are not serious, many are caught in time. But many, many mistakes don't necessarily cause death, but cause very prolonged and debilitating illnesses. I could tell you stories, not just from D, but from my experiences as a patient and worker in the hospital and my dealings with some of my other friends who have chronic conditions that would probably blow. your. mind.

Health care is a mess. An absolute mess. It is systemic. It is often not directly tied to the incompetence of the health care workers themselves, but to the adverse conditions they must work in and the system they must deal with. The thing is, if you don't have to deal with health care very much, you are probably going to be ok. But it severely affects those who have to live in the system. It severely affects the disabled.

With disabled patients, I basically see a few major disaster areas that affect them the most (but also all patients to some extent.)

1. There is this attitude that disabled people don't have lives. That they are devalued and have no quality of life. Doctors are sometimes very laissez faire about D and other disabled people. They don't want to deal with us, they triage us out of their circle of concern. They don't actually think that we are worth fighting as hard for. Sometimes, when I get this attitude from doctors, I have had to tell them, "Look, D is valuable to us. We want him alive and healthy. He has children. He has a father who is devastated anytime he sees D suffer. He has talents and friends and a life worth living. I need him. Very much so. He is not some DNR case we are waiting to be unburdened from. So, I certainly understand that you will be doing everything you can to ensure his well-being." This conversation has really helped in many cases. And every time I have it with  some egotistical neurosurgeon who wants to get rid of D so he can go do Big, Elite, Studly Neurosurgeon things, I find myself incredulous that I actually have to say these things. That I actually have to prove that D is valuable enough for health care.
2. Along with that, there is this attitude that disabled people can't or don't take care of their own health. Many times, a doctor or therapist will prescribe A,B, and C therapies and treatments. And then they tend to give up on you if you haven't complied exactly or they give you attitude about it. They seem to have NO idea that while they said for you to do A,B and C; another doctor said for you to do D,E and F; the PT told you to do G,H, and I: And the RT told you to do J,K, and L, and the nurses told you to do M-Z. Furthermore, C is contraindicated to F and B is a complete contradiction of K. Furthermore, you actually have to eat, sleep, work, and actually have a little free time. There just isn't enough hours in the day to do A-G, much less A-Z. So, since no one helps to prioritize or coordinate these things, we have to pick and choose on our own. Sometimes we may pick and choose the wrong things to prioritize, or we picked the one that contradicted you and that is pissing you off. It isn't that disabled people are necessarily being non-compliant (a word I fucking despise, BTW) it is that you medical people can't get together a coherent plan of care.
3. And along with that, health care workers sometimes don't seem to understand or care about the medical jujitsu (hat tip to Kathryne) that needs to be done to get anything done.  This medical insurance business is absolutely fucking crazy. People seem to think D is at home, leisurely lying around all day, recuperating and living off disability. He actually works ALL DAY LONG just to stay alive and get the health care that he can fight for. That apartment is never peaceful and quite. The phone rings off the hook all day long. Insurance companies wanting this or that. Durable medical equipment companies wanting this or that approval from insurance companies. Doctors offices wanting insurance information. Home health nurses and therapists wanting to schedule this or that. People coming in and out all day long. Mail, insurance forms and medical bills stack up daily. (I told D the other day that we could probably wallpaper the entire Sears Tower with the CMS/Medicare statements that come in.) Phone calls and paperwork he has to do to insure that he keeps his Medicaid, his Tricare, his Medicare and social security, his attendant care. You don't get put on disability and just stay there, you have to prove it again and again at the drop of a hat.  At anytime, any one of the dozen agencies that provide services to D will just decide that he needs to get a billion documents together to prove he is still disabled, still poor, and still under insured. Tax returns, doctors reports, income statements, rent and utility receipts, and whatever else we decide need to be in our office! And they need it in TEN DAYS or you lose all of your services and you will have to reapply, which will take you anywhere from 3 months to five years to get re-approved, and in that time you will not be able to see any doctors, receive nursing or attendant care, or get food stamps...which basically means you will probably die. There are two conversations that I just refuse to have with anyone right now. One is regarding how easy it is to be on disability and how there are a bunch of fakers out there (because it is such a luxurious life!) And the other is anyone who argues against universal, single payer health care. Unless you fight for your life DAILY with insurance bureaucrats whose system have caused you great physical and emotional pain and have regularly taken life saving health care away from you and made you fight for it for months and years on end...then seriously, you better shut the fuck up. You have absolutely no idea what you are talking about. And doctors who opt out of Medicare and Medicaid? Doctors who fight for their own profits and not systems change? Evil greedy bastards. I'm not saying you don't have issues in our system, you do. Like, I think that if the government isn't going to compensate you well for Medicare/aid patients then they should help you out with your student debt and your malpractice insurance. I think we need the system to recruit doctors (and help them succeed) who care about patients and care about justice in health care instead of getting these (many of them privileged) doctors that are in it for status or money. But, fight for us, why don't you. In fighting for us, I think you will also be fighting for yourselves. I certainly have sympathy for the shit practices have to go through in regards to insurance reimbursement and liability issues.
4. The number one thing that has compromised D's health, and many other disabled people's is a complete lack of comprehensive care. For people who have complex health conditions that require many specialties, the care is dangerously fragmented. The left hand doesn't know (or seem to care) what the right hand is doing. There are stupid, arbitrary rules about which nursing agency can do what and take orders from which doctor at what hospital. D will sometimes have three different nurses come in on one day. The wound care nurse, the infusion nurse, and the general nurse. This would be okay if they had special skills in these areas, but they sometimes don't.  We had an infusion nurse with years of experience on the wound vac (believe me, it is a skill), and then a wound nurse who was just starting to be trained on the wound vac. Sometimes, these nurses can't confer with each other because they work for different agencies. There is also a lot of passing the buck to someone else. There is also a terrible amount of just taking care of the acute problem that is right in front of you and completely disregarding the big or long-term picture. Doctors don't want to communicate with each other. They don't want to admit they don't know something and get a consult. They don't want to work as a team because it is more time-consuming. It is very 'treat 'em and street 'em' out there, and that is why there is a huge amount of bounce backs. This is D's fifth time in the hospital for this pump issue. And they are really no where close to a long-term comprehensive solution. Nor are they really interested in finding one. They will get D's vitals stable for the time being, and then they don't care anymore. D and I have hypothetically talked several times about moving to Denver so that we could be close to Craig Hospital, which uses a team approach to patient care. Everyone, doctors, nurses, therapists, patient, caregivers, family members and friends, sit down at least once a week and decide on a plan of care. I know that is a bit harder to do logistically when you are in different buildings in different hospitals, but guess what? There is the phone, fax, conference calling, emailing with cc to everyone. There could be a system where one doctor is in charge and everything goes through her so she can see the big picture and make the final decisions that make the most overall sense. (The Jon-Luc Picard strategy.) TALK TO EACH OTHER, DAMN IT! How hard can it be?
5. Also, actually know about rehab and other services for the disabled. And if you don't, get a good social worker who does and use her. Many times, doctors are the "gatekeepers" into the disability world. Obviously they have to look through the lens of the medical model, but they should at least be aware of the social model. And that there is life after disability. Many times, it is the doctor who says, "This is it. There is nothing more I can do. You now have this permanent disability. Have a nice life" as he slams the door. I'm sure it is hard to call it quits after trying to cure or prevent disease and disability, but after you close the medical door, open the disability community door. It is the only way people with disabilities get their lives back. You as medical people can be very powerful in this regard. You could offer hope instead of just failure. It is a total shame, but I know a ton of blind people who went blind due to diabetes or a head injury or what not. They went through a few surgeries and nothing worked. Then, there was that one appointment with the doctor. They all remember it. It was the one where the doctor said, "This is it. You are disabled." And then they left with nothing. NOTHING. And these blind people would go home and quit their job, sell their house, move back in with their parents or something, and sit. Just sit and do nothing. Sometimes for YEARS. My friend Susan sat for two years before she knew that there was free rehabilitation available. My friend MRY sat for three years before he knew. I knew someone else who sat for 6, before anyone ever offered help. These people can't read the phone book, use the computer, read, nothing. They have no access to information. Their parents are sometimes elderly and unknowing, computer illiterate. How hard would it be to give someone the proper referrals to rehabilitation and advocacy groups? A fucking brochure is what we are  talking about. I think this has gotten better with the internet and people's friends looking up things and trying to help. But you know how most people get services? Social security comes calling, demanding that they prove they can't work and in order to prove that sometimes you are required to go through rehabilitation first. That's all well and good for social security to refer you, but social security can take YEARS to do this. Friends and family should not get a newly disabled person plopped on their doorstep with nothing and have to go searching on their own. Doctors have a responsibility to have knowledge of all the services and options available and a patient should not be dismissed from care until a rehab plan has been locked in. And also, doctors can help by advocating and medicalizing (with insurance companies) rehabilitative care. There are now years long waiting lists in most states for developmental disability services and blind services. There is literally next to nothing available for newly deaf adults. For people with SCI and the like, they are usually rehabbed in hospitals. But there are a variety of options here and patients should be given all the information to make good decisions. There is a world of difference between the rehab results from an SCI patient who goes to Craig Hospital vs. one who goes to, say, Little Town Hospital Rehab Where We Mostly Give Old People A Walker With Tennis Balls on its Feet. Also, SCI rehab hospital stays have gotten ridiculously short. Stays used to average 6 to 9 months. Now SCI patients are getting kicked out in two or three. You can't get rehabbed and recovered in two or three months. And in the long run, it is going to cost the health care system. Poorly rehabbed people have more health problems, require more attendant care, and are hospitalized at greater rates than those that got good, long rehab stays.
6. Finally, it is OK for doctors to not be familiar with something about us as disabled people...on the first visit. I do not expect all of my doctors to know about Stickler's/Alport's syndrome. D does not expect all doctors to instantly know about baclofen withdrawal or autonomic dysreflexia. But after taking a Hx on the first visit....GO LEARN ABOUT IT. Get into your little medical textbooks, go online and read medical journals, talk to your colleagues, whatever it takes. Instead of grandstanding and acting like you know all about it, or being embarrassed that you don't, just go research it already. And at least know something about it in the next visit or two. Also, if you don't know a patient well and are unfamiliar with his case, actually listen to what he is telling you! So if D comes into the ER and says, you can't put me on a regular gurney, I need some kind of air flow mattress, or only Demerol will be effective in regards to my autonomic disreflexia right now, or please use this vein, not that vein because you will have to poke me 80 times and you will end up using this vein anyway...actually listen. Because people with chronic illnesses actually know some stuff. And they are not all trying to get a Demerol hit or make your lives difficult. They are actually trying to make your lives easier. Don't disregard what they say as if it isn't important or you know better...because you probably don't. When a new patient with complex issues comes in, guess who is the expert and knows more about their care? THEY DO! So listen, please. And lose the condescending attitude.

This probably isn't what you had in mind, Bliss, and I'm sorry for being so angry. None of this is directed at you, personally, of course. But I am ANGRY. My kids, again today, had to say goodbye to their father and I can't tell them when they will see him again. And I get scares sometimes that the answer will be never. And I know that D is a complicated case, but some of these things are just so utterly dumb that I can't hardly stand being in my skin when I think about them. A person like D has enough unpredictability from his body itself. It would be nice if he also didn't have to deal with the antagonizing unpredictability of ignorant and incompetent staff, corrupt and exploitive insurance companies, and a system that basically would rather see him dead.

Eeeexxxxhhhhaaaaaaaaaaaaaaaaaaaaaaaaaaallle

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

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

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

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

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

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

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

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

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

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

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

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

Still in BlogFog

I am so totally going to write the post about disability competencies in the medical field that has been requested of me more than once. In fact, I've been writing it in my head all week. But I'm really pissed about some of the stuff going on with D's medical people, so it just boils over in my brain into a big, pissy diatribe that borders on insane hatred of MDs. As soon as I can back it up into a coherent post, I'm going to write it.

So, to at least write something, I'll give you some lazy bullet point updates.

1. D. D is doing pretty well. He is on another WoundVac now that is sucking the life out of the original incision site that the infected pump was removed from. He is off all IV antibiotics. He spent over $1000 of his own money to get a circulating air mattress that helps prevent pressure sores that insurance won't cover. It looks like nothing is going to happen until the incision wound heals, which means he will probably not get the medtronic infusion pump put back in for several more months. He is going to a new pain management doctor at the beginning of April, and if I go much further into this update I will spiral off into the above mentioned diatribe.
2. With the exception of Thurs. mornings when my dad took the kids to the gym for me for a class, I have now had the kids by myself without help for nearly 8 weeks straight. My dad is back in Kansas now and the class is over, so that is gone. D has only been able to come over one or two times since January and has trouble being left with the kids for more than a few minutes because of his spasms. It has been a long haul.
3. When D first went in to the hospital, I had a lot of church people volunteer to come help out with the kids. I'm sure they were well intentioned, but one by one they seemed to drop out of site. It may be my fault for not following through very well, but I just have a real difficult time managing people and hunting them down and badgering them for something they've volunteered to do. I would do one phone call or email reply, and then if things fell through, I was not about to go begging and badgering. So, I've basically been all about the kids lately.
4. I'm tired.
5. My friend, Niklas, is coming to visit in May. He's actually bought tickets and everything, so that makes it real. I promise I will not just hand him my children as soon as he walks in the door and then go lock myself in my room and sleep for a week. I promise. Really. I won't do that. No, I won't.
   
6. I totally missed a covenant group meeting tonight at my church. The kids and I slept right through it. I missed last month, too because I was attendant caring for D that night. Bad, bad, me. The people are nice and I enjoy going to this thing every month...for the first two hours. The first two hours are visiting while the kids are in the next room with a sitter. The last hour is a potluck. It is the potluck that kills me. First, I have to figure out what to make, based on some "theme" which usually includes finding recipes and buying groceries I might not normally buy. In large enough quantities that would feed everybody, even though mostly people don't eat much at these things. I just don't have the money to waste like that. And something that the kids (mine and others) will eat and something that doesn't have milk and gluten for this or that person. Then I have to spend time on Saturday making it. Then I have to arrange the kids schedules so they are adequately rested and fed and clean for this thing. Because for some reason we do the potluck at the end rather than the beginning when our food would be warm and the kids would be hungry. (At least my kids.) So if I go by myself, I have to find a way to pack and transport the food for the 3/4ths mile walk. Then at the actual potluck, I am running around feeding four people while everyone else just has one person or maybe one person and their kid. Then everyone is done eating by the time I have sat down to eat. Then I can't hear anything anyway. Then I have to help clean up and monitor overtired, running around kids. Then I have to get us all home and to bed and up for church the next day. I know I'm being a big whiny whiner that whines about this, but I love the group...and that last hour almost makes it so not even worth the trouble. I am thinking that I either need to quit or make some kind of deal with them that I will bring snacks every time but I am bowing out early before the potluck and just stay for the first two hours. Cuz, man I friggin' hate that potluck with the heat of a thousand suns. Okay, that may be an exaggeration, but sometimes little things tip the scales of what you are able to electively handle.
   
7. I've made a decision about preschool. I'm going with the homeschool coop that is cheaper, yet farther away. I missed the deadline for the other preschool (purposefully) and I have not yet gotten in to the homeschool one, so I take a risk. But I have been told that I do have a good chance of getting in there. I have visited there twice now. One on my own and once with the kids. Everyone there was EXTREMELY nice and accommodating. Almost too nice. I started looking for signs that I was entering a cult! But I think it is ok. This was my first interaction with real live homeschoolers (vs. the ones that live in my computer). I found this crowd to be secular and lacking any sort of radical zealotry; homeschool or otherwise.  They are willing to take both my kids for one open spot. They don't double the volunteer work because I have two kids. At first I thought that it wasn't "meaty" enough and it was too laid back and it wouldn't challenge my kids. There was a lot of just free play and very little structure. But then I took the kids, and it was really right where they needed to be. Three hours was really plenty for them. Naim can sort of manage his overstim problem by just escaping to a quiet corner when he needs to and Aaron doesn't have too many people telling him too much of what to do. He needs a lot of freedom and hates to follow the crowd and procedure. YET, there is a loose procedure for Naim, who likes it. The trip wasn't too bad. It is a 20 minute ride and a mile walk. There is a city park and a library nearby. I really felt, on a gut level, that this was where we belonged. It felt good to be there and it felt like a place I wanted to keep going back to. The kids had a lot of fun and still ask me when they can go back. I'm sorry to say that it will probably be about five more months.
8. My goal is to get to bed by midnight every night, and it is now 12:01. So, good night!
   

As Promised, Aaron's Video

Here is the video I took of Aaron last week. He slept all day that day, and so I had to make 2 lunches, which ended up being PB&J, which is why they were both so keen on sandwiches. (Really, I don't feed them PB&J every day of their lives.)
What is interesting about these tapes is that when I watch them I see what I didn't hear and missed. For example, in the beginning of this, Aaron is telling me to "crack" the camera. He means click it and take a picture, which is what he is used to. Later he asks, "Where'd Abbey go?" when I asked him what his favorite toy was and I missed that altogether. It makes me wonder how much of their communication I miss day-to-day. On the one hand, I was distracted by the camera, Naim running up and down the room at top speed, and my dad was in the kitchen being generally annoying around that time. On the other hand, if I miss this much on a daily basis, that must be frustrating for them. But I guess it will only teach them to enunciate more and be clearer, or use more sign. And that might be good. Although Naim is fairly patient with me when I don't hear or see something, Aaron generally acts like I'm a flaming idiot. But I guess I better get used to that.

Aaron 2/29/08 from Lisa Ferris on Vimeo.

Sing It, Girls

Eh, all is going along fine. But I've been in kind of a writing funk. Can't think of any topic that inspires me too much. Part of it is that I'm currently going on month 2 of hacking up MRSA luggies from my tired, tired lungs. Keeps me up all night...but I'm getting some incredible abs from all the coughing, or rather trying not to cough at inopportune moments. And I've learned how to NOT OD on zinc cough drops and midol. Which, by the way, makes everything taste and smell like iron ore.

Anyway, the last 24 hours have seen me in a funky mood. So (apropos to nothing, really) I went Sheryl Crow crazy on YouTube. For some reason, she is one of the female voices that I can hear fairly well. My college friends Joy and Chaz would call this "Dagger Music." So, here. Enjoy some Dagger Music. (And if you have a topic to inspire me with...go ahead and drop it into the comments thread.)

1. The First Cut is the Deepest

2. The Difficult Kind (w/Sara McLaughlin Shelby (?))

3. I Shall Believe (w/Pat Benatar) Sorry for the intro, but this version with PB rocks.

The Naim Tapes

I've been playing around with video. I interviewed both kids using my little digital camera that also does about 5 or so minutes of video. Now I'm trying out vimeo, which apparently only lets you upload a certain amount of video a week. This one of Naim was the only one I was able to upload. I'll have to show you Aaron's next week.

Believe it or not, Naim's speech has improved dramatically in the last 3 or 4 months.

Naim 2/29/08 from Lisa Ferris on Vimeo.

New Look, Old Typepad

I really, really, really need to be ordering groceries right now, but instead I'm tinkering with the blog.

Recently, I started a new blog over at Wordpress. It is just a little homeschooling record keeping and thoughts type of blog that would likely bore the lot of you to tears. I haven't decided whether to password protect it or allow certain people to have the URL or just not ever tell anyone about the URL. I need to play with it more.

Anyway, I went over to Wordpress to try it out because it is free (at least my version of it is.) And after the first hour of frustration, I slowly started to fall in love with it and want to marry it and have it's children. Very easy to work with with a lot of nice features. I came back to tinker with typepad here just to compare the ease of use. And I think I will be divorcing typepad, soon.

I'm going to wait till my Typepad year is out and also when my next google ads check comes, so its not anything that is going to happen immediately. I'll keep you posted.

Now I've had websites/blogs for over ten years now. This is what I've come to learn:

HTML-ing it by hand? Sucks
Diaryland (remember those)? insidious.
Live Journal? Disgustingly Ugly and bumbly to use
Blogger? Really bad
Typepad? Okay to Good
Wordpress? Really, really good.
Your own web designer in the family (a la Dooce)? Priceless

...in case you are shopping.

More later, family needs fed, so I'm off to Safeway.com. (Maybe next time I'll rate online grocery services. Surely about as exciting as this post.)

A Mandatorily (Hopefully) More Cheerful Post

After my last post, Niklas called me and was all "Are you OK?"-ing me 20 times over, which led me to think that I need to lighten things up around here. (And because, yes. I am ok, really. But thank you all for your kind thoughts and words. They really do mean a lot.)

So, lets see: Updates.

D is on his last dose of Vancomyecin tonight and has already finished his other antibiotic. So, hopefully this means he is on the road back to getting a new pump. I think they wait a week or so before they re-culture everything and make sure the infection is gone. Then go from there as far as replacing the pump.

D is gathering opinions about this and finding out some information that leads us to believe that A LOT of careless mistakes have been made. He got a referral to another pain management clinic and he will decide then if he wants them to take over (and if they are willing.) The infectious disease people especially clued us in to a lot that didn't happen as far as infection control in the initial surgery. So I would really have to be convinced that the same surgeon (still in India with no replacement) should redo the surgery. I'm hoping that if it can go to another surgeon, then overall things won't be delayed too much.

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Naim apparently does not need glasses. Neither of them do. All is fine, there. He must just be imitating me with all of his "I can't see" stuff. The ophthalmologist was not willing to test or make a determination on colorblindness, yet. I have been trying to test this myself. So far I do notice that Naim CAN match colors, but not verbally identify what they are. This is a good sign but still doesn't rule out colorblindness. He could just be matching shades of grey. Easier to match than to identify with a color word. Either way, it isn't a big deal, I know. But I would just like to know. At this age, everything is about color. People ask him color questions all day long and he is just bewildered. If I knew for sure, I could start figuring out some accommodations and stuff.

They don't have to really ever go back to the opth. unless there is a problem. He said I could bring them back in when they are 5, just to make sure all is okay before school starts and they should be a little bit more reliable patients, then. I may do that, but I am not doing his other suggestion.

Whenever I go to the doctor, either for myself or my kids, I am always a source of curiosity for them. They always want to do all kinds of tests on me and my kids. After traveling the continent with my mother growing up doing painful medical tests to basically find out nothing...I don't see the point. I did not choose to do IVF and genetic testing on my embryos. I did not choose amniocentesis or triple screen. I did do the full-scale diagnostic ultrasound because there was no risk or pain to that. But what would it have helped with? I would not have aborted, and because of my background, I felt as prepared as anyone can be if I found out the kids had Trisomy 21 or something. It was either find out then and risk causing a problem, or find out at birth.

I have done all the screening on my kids to test their function. I have done vision/hearing/kidney testing to determine if there is a problem. These are relatively painless and useful tests that actually help us. I see no point in doing further genetic testing, especially those tests that are painful. This opth. suggested that I take them to a doctor that specializes in genetic diseases of the retina so that they could test for RP and other genetic eye disorders. (The doctor he mentioned actually ended up being MY ophthalmologist.)

Anyway, the test that they would do to determine if the kids have RP and other retinal disorders is called some sort of electro something or other that escapes me now. As soon as I heard it, I knew what it was and had a sick memory from childhood. I'd had this test at Stanford University while my family was on vacation when I was 7. Here is what they do: They immobilize your head in a vice in a dark room with what looks like a satellite dish in front of you. Your eyes are very, very dilated. Your eyes are held open by these sort of whole eyeball sized plastic contact lens things that don't allow you to blink. Attached to these contact lenses are wires. Then, they shoot flashing lights at you. For a long time. A long, long time. I was seven years old and had no say in the matter nor any knowledge of what was occurring. (And in my case, the results were inconclusive so it was all for not, although the test may have improved since then.)

So, this guy thinks I'm going to allow that test for my three year olds? He must be on crack. And for what? To show that they either do or do not have RP? And if they do...can I do anything about it? No. They could go blind by the time they are in high school or not until they are in their 60s. There is just no point to it except to satiate their curiosity and file our genetic makeup in their data files.

I am still haunted by some of my experiences in peds oncology and what those families had to go through and what the kids could or could not consent to. In the case of cancer, the weight is tipped strongly in the direction of making the decision for your kids to have painful medical procedures done. And I understand this. But even then, whenever possible, especially near the end of life, we let the kids have as much say as possible in what medical interventions they wanted. I am a strong, strong advocate of giving kids as much self-determination as is reasonable in deciding medical stuff for themselves. This is why there is no way in HELL I would circumcise my kid. Forcing an unnecessary surgery without anesthesia on an unknowing child? (And I was a very occasional floater in pre-op at the children's hospital I worked at. I probably spent less than ten days in there in three years. And in those days I saw three, count 'em, three kids in for botched or otherwise problematic circumcisions. The risk of the procedure pretty much cancel out any benefits.)

Things like circumcision, braces and other cosmetic dentistry, genetic testing, anything that falls in the optional category for me is a decision that my kids will have to make for themselves when they are older if they so choose. I don't see why this is so "out there" or radical, but doctors look at me as if I have two heads when I tell them I am not interested in having my three-year-olds suffer through an electraopthalthingamajig just for curiosity's sake. So, no eye doctors for the kids for a while. I probably will have their hearing screened again this year.

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Preschool for next year is giving me a headache. We went to an open house for one today. The kids LOVED it. Well, Aaron loved it and Naim hated the noise but was tolerant and was more participatory after some of the other people left and it was calmer. It was easy to get to. The facilities were not fancy and obviously most things were well worn (I mean that it lacked the Goddard School's shiny corporate sheen), but comfortable. There was an abundance of age-appropriate things to do. I saw some Montessori stuff. I saw some signs of an effort to include diversity such as books with minority kids in them and things about other holidays besides Christmas, like some dradels, Chinese New Year stuff, etc. The kids were mostly white but not all. I think I saw one black kid and one Asian kid and about 7 or so Hispanic children. There are 18 kids in each class. Wow! But four adults. It seems small for 18 kids, but I can see it being workable if the kids were rotated through different spaces in a center style or something. It is very child-centered and play oriented. Light on the academics and worksheets nonexistent. The playground was pretty cool. It did not have the standard issue play equipment. It had a HUGE sand pit (like as big as my kitchen) with a grape arbor over it. Adjacent to the sandpit was an industrial looking sink. There were also draining pipes and gutters along the sandpit where water could go so it isn't a soppy mess. Obviously hand made by some handy-person. Then there were hay bails, logs, wooden planks, metal tubing...a woodworking bench, basically things that required the kids to invent their own playground equipment. They gave the example of the kids working together to make a see-saw out of logs and planks, or a mountain out of hay bails.

The teacher and other parents were nice and didn't bat two eyelashes about my disability stuff. They seemed willing to work around it as far as parenting jobs. There is nothing wrong with this place that I can tell, and I think the kids would be very happy there. I would probably be fine there as well. The main disadvantage is that it costs more than the other one I'm looking at and I would have to do A LOT of volunteer work. Oh, and it is not entirely inaccessible, but somewhat limiting for a person in a wheelchair. It is just too crowded. Stuff  is too close together. There are a lot of steps everywhere. There are ways to get around the steps but it involves taking the long way around the building. Essentially, I would be on my own for the most part as far as volunteering. There would not be a whole lot D could do except come in and park himself and visit. So there's that.

I'm visiting the other one, the homeschooling co-op, next Thursday. That is the one that is further away, but less expensive and less volunteer work and more things for me to do around the neighborhood while I wait for the kids.

Here is the headache inducing problem, though. I would have to apply at the first one in person at, literally, nine o'clock in the morning on March 3rd. Like there are lines of people waiting outside to apply. I have been told that if I do this, there is a good chance that my kids will get in. I have to have my application ready and $55 per kid. The other preschool takes applications by the quarter instead of the whole year. They do existing kids first and then new ones. I've heard this is very hard to get into as well. So, they don't take applications from new kids until August! What I could try to do, is get the kids in this spring, so we would be existing for August, but that registration is March 11th. Still no help. So, do I apply at the school I visited today, and risk losing $110 deposit if I pull out in Aug and go to the other school? Or do I bank on the other school? I'd be happy for the kids to go to this one, but...that volunteering man, its just a lot. At least at the other school I would be making connections with families that my kids might see for a long time, not just one or two years.

This is the twin factor as well. With two kids who are the same age, it is just so hard to get them both into things sometimes. I'd feel a lot better about my chances if I just had one. Sometimes crazy things happen, like what if I'm number 18 in line, meaning one of my kids is the last one to be enrolled and the other is out? This has actually happened to me, and it sucks. Then, even if there is a waiting list it is pointless. Because you have to have TWO spaces open up at exactly the same time. And that never happens. Do you put one in and hope another spot opens up for the other one? Or do you just pass on both? Because of my inability to drive the kids around, I really have to have both the kids at the same location or not at all.

Anyway, this preschool thing is becoming more trouble than it is worth for me. But I know the kids would love it SO much, so (as Naim would say) "What to DOOOO????"

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In other news: My friend J, off and married a woman he has spent only weeks with in person in the Philippines, sorta kinda all the sudden...or something. It is a bit of a strange story where I know I'm lacking some vital details that would probably make it less strange, but it is one of those sort of eyebrow raising things. I do know what people's first conclusions are with this situation and am trying to just not go there in my mind.

Now he is back in the states and still has to work out some kind of huge immigration obstacle before they both can live on the same continent. He thinks it would be more doable for him to move to the Philippines with her and her extended family. This is a guy who has lived the last ten years alone in a house with no family and is one of the most private and reserved people I have ever met. He had trouble moving into an apartment because he had to be surrounded by (gasp) PEOPLE and their noise and smoke and existence. That move in the same suburb was so regretful that he broke his lease and rented a house right next to the one he just sold...but moving to an entirely different country with an entirely different culture, language, socioeconomic level, and different ideas about nuclear families doesn't even cause him a second thought.... 'K.

Anyway, he told me and I sort of gave him a weak congratulations and sort of "whatever-ed" him in my head. Now, I'm thinking that I should have made a bigger deal about it and need to take him out to celebrate or something. I thought of how many raised eyebrows I got, and how many doubts and whatevers and "it'll never work outs" I got when I told people I was going to have a baby. And they all underestimated me and D and the situation and my motivation to make it work, and sometimes they were determined to be less than supportive to prove themselves right instead of being supportive and helpful. So I think I need to assume that he has the motivation to make this work, that there is more to him and her and this than meets (my) eye, and be supportive and helpful.

So, that is on the agenda as soon as I can make time for it. I do have my hypocritical and judgmental moments. But I do try to be somewhat meta in examining my own behaviors and admit when I'm being an ass and make it right when I can. Doesn't always work out, but I try. I don't get what the hell J is doing with his life, but I can either blow him off or be a friend, so I will try the latter.

Boomerang: Or My Somewhat Morbid Valentine's Day

The kids made Valentine's Day cards for dad and grampa F. And Aaron found a picture a week ago of a heart-shaped box of candy and has been asking for one since then. So I got a big one for them to give to D and they each got a very small one for themselves.

The plan was to take the stuff over to D's after their nap and just stay for about a half hour or so. But, of course, that was interrupted by "The Very Big Deal." D has a new infection, C. Diff. (I can't remember what the whole name is). It is one of those probiotics that your body naturally has and is good for you until you are on a bunch of antibiotics and the level gets out of control because it is not sustained by the other natural bacteria. The hospital wanted him to come in, but it was not an emergency situation, so we waited a couple of hours. We took the Valentine's stuff over there and that was fun. The kids liked giving him his gifts. And eating the candy. Then I stayed to help him get ready to go to the hospital.

We have been kicking ourselves for months about not getting our paperwork in order such as wills and medical power of attorneys and stuff. Now all of the sudden, D was in a mad rush to do it. We signed stock paperwork to make me his health care representative. And then we talked about death and what he wants done and when he would want me to pull the plug, so to speak. These are all things we have talked about before, so it was merely a revisit and no big decisions needed to be made. The main thing D is afraid of is that his disability will prejudice the medical staff and they will kill him off before his time. This is a very, VERY common and serious problem for people with disabilities. We didn't want to put down in writing any kind of thing about feeding tubes, life support, 'heroic' measures, etc. because all of that is very commonly a way for people to very easily devalue a person with a disability and is so contingent on context. I have a good feel for knowing that I'll be able to separate the disability prejudice from sound medical decisions that values D's life. I also have a somewhat good feel for when medical intervention is really keeping someone alive rather than simply prolonging their inevitable death. What I don't have such a good feel for (or maybe I am just uncomfortable making the call) is when D wants to give up. When the pain is too much, when he has had enough. I guess, if the situation arises like that, I'll just have to trust myself and our relationship that I will know what to do when the time comes.

So papers were signed, and then he wanted to take video and pretty much do a video medical power of attorney thing and a will. He is concerned about family backlash. That they will not be happy or think that I somehow made him give me this "power." Truth be told, I don't really want it or like having it, yet I don't know that I trust it to anyone else, either. I know him. I know my own abilities and instincts. I know (and D knows as he mentioned today) I have the ability to be a bitch on wheels to get what I want when the situation calls for it. I don't know these things about anyone else. So, there you go. (I joked with D that we should do a video with me holding a gun to his head while he willed me ALL HIS MONEY (btw, there is none), but he didn't go for that.) So basically, I just set him up with the video camera and left the room so I wouldn't even be in the vicinity for whatever it was that he said.

So anyway, that was no fun.

Finally, he called the ambulance. It was just a granny-run, which in other states does not require that you call 911. You can just call the ambulance directly and get nonemergency ambulance transport. But here, they don't let you do that, so they make us call 911, which is stupid. And then the fire truck shows up and the ambulance and sometimes even the police. (When I called the ambulance for Aaron's seizure, I had two ambulances, a firetruck, and a squad car show up. There were 10 men in my house to pick up one little boy.) Anyway, today there was only 4 or 5, I think.

Some people ask me about having the boys there during this, and for one thing, it isn't like I really have anywhere else to put them. For another, I think it is good for them to get familiar and comfortable with the drill. Especially on these nonemergency type things, it is a good opportunity for them. There will be a time when we do call 911 for an emergency and it will be very harried and scary. And the more they are used to this as being natural thing that we do, the less traumatic that will be for them. They like to go out and look at the firetruck and ambulance. They got sticker badges and they think that is cool. They like the bed on wheels. They are not uncomfortable around the EMTs. The more they experience it as normal, the less traumatic it is going to be for them.

When I took them out to look at the firetruck while the EMTs were working on D, there were about 4 kids all in a hubbub about the emergency vehicles. They were about 8 or 10 or so. And they were actually scared. They lived in the building and were worried about a fire. They were on their bikes and worried if they should go up and get their moms. I told them that there was no fire and that it was all OK. And that my "husband" was just very ill and he needed to go to the hospital. They asked if they could wait until he came out, and I said ok...as long as they stayed out of the way. I knew that they would see D being conscious so thought that would make them feel better. This is another dumb reason for the 911 thing for a granny-run. Having the firetruck come out just confuses and worries people. Anyway, I don't want my kids to be scared like that, so hopefully this exposure will help with that. But after they wheeled D onto the bus and we had waved goodbye, one of the girls said to me that she was sorry he was sick and that she hoped he got better. I don't know why but this made me tear up. She was very sweet.

The kids know that they will see D tomorrow at the hospital. They like going and so they are okay with it. Aaron gave D a matchbox truck to take with him.

Tomorrow morning we are going to the ophthalmologist for the kids. I'm not looking forward to it. They have to be periodically screened because of me, but Naim has lately been saying "I can't see" all the time so I'm wondering if he needs glasses. It could also be, though, that he is just copying me. They will hold something up to show me and I will say, "I can't see it. Bring it over here." But he also hasn't really known his colors and seemed confused whenever we talked about color. Aaron has known colors for well over a year now. Naim knows numbers and letters pretty well, so I don't know if the color thing is an acuity thing or colorblindness or what. Although just this week he has seemed a little better about colors, so who knows?

The eye doctor is in the vicinity of the hospital, so unless the kids are completely spent and beyond the edge of sanity, we will probably trek up to the hospital and visit D. Long day. Lots of eye-drops and hills. Can't wait.