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Health Conditions and Other Mysteries

So yesterday was Rare Disease Day, and I tried to find time to say a few things about it, but life got in the way. Thus, here's today's attempt at it.

As background, my brother, until he passed away a few years ago, had cerebral palsy. While it's not quite a rare disease, it was one that kept my childhood from being normal in any way. We all loved him, but mine was a life of wheelchairs and vans with lifts installed and ramps into the front door of the house and, for a few of his early years, trips to Philadelphia every year to be seen by an institute that would teach us how to care for, and give therapies for, him as he grew.

My son has a rare disease, or condition, or whatever you care to call it. It's so rare, the doctors can't figure out what it is, despite over a year of testing and a trip to Johns Hopkins in Baltimore to meet with a top-of-the-line specialist. Local doctors suggest we should go see him about once a year.

Not only that, but the Baltimore doctor suggested that it may be a family condition from my father. That is, my dad and brother probably had it but didn't know it. I may have it, as well as my sister and her kids, and my kids. Xander obviously has it, Zoey might at least carry the gene. We don't know. Once we have a diagnosis, we can look into testing everyone, I guess. Meanwhile, there are medical tests I should have done to make sure there's nothing wrong with me, but there's some question as to insurance paying for it and some waiting for the deductible to be met. Life...

All of that said, I am writing about Xander in particular and how he impacts us. I'll try to remember all the different parts of what I want to say.

Xander has ligament laxity and arterial tortuosity. Those aren't diagnoses; they're symptoms. The first is an extreme flexibility of his joints, including his ankles and knees, making it hard for him to walk. In the second, his arteries are not straight, leading to him being prone to aneurysms at some point in his life. With an aneurysm in the right place, he could die in minutes, and the right places are possible, according to the tests done. Doctors watch this pretty closely.

Speaking of doctors, there's a lot of them. We're tapering off with some of them, but besides his pediatrician, he sees or has seen regularly cardio, ortho, GI, developmental, genetics, neuro, urology...I'm forgetting some. We've done speech, physical, and occupational therapies weekly for a couple of years now. Until he started school this year, his therapies were special trips, three a week, to the local children's hospital. Now he gets them done while he's at day care, which simplifies our lives a bit. But we still have a lot of doctor visits across time and a number of tests that happen every few months.

Until school, he had lots of home visits from different programs, none of which could do that much. They got us in touch with a few resources, brought a few therapists that Xander mostly ignored, and claimed their success for the day before they left. They tried. We had to be home for their visits.

My three-year-old son is only starting to walk. He's had braces on his ankles for a while now, but the therapies are paying off in this regard. His overall development seems to be that of a two-year-old, last I heard. Words are slowly appearing for him, though he's been babbling for a long time.

I take my daughter to the doctor for whatever her problem, and the doctor often starts by asking multiple questions about my son. Her life is, like mine was, in the shadow of her brother's needs. We give her extra attention to let her know that she's special, too, and she really is.

Life doesn't stop when you have a special needs child. You still have to go to work. You still have to clean the house and cook and do all the things that people do to live their lives. The difference is that you have some extra work to do. I have a 35-pound boy that often needs to be carried, and while my back doesn't hurt, my knees do. I have a lot of worry as to his future, much more than a parent of a typical child would have, especially without a diagnosis. Everything is a waiting game. Health, talking, independent walking on a regular basis (until recently, walking at all). Waiting, I am certain, will wear you down eventually.

He's tough. My god, he's tough. He's been through so much, health-wise, that he doesn't cry when he's in pain most of the time. He cries when he's angry or sad, perhaps, but pain is just something he's used to. So you have to figure out if he does hurt.

You start to notice that people don't see your child, most of the time, as disabled in any way. Generally, that's what you want. But when you try to take your child somewhere crowded, nobody will give your child the space needed to function. Hell, if he's in a stroller and traveling against the flow (thank you, Baltimore aquarium), they'll be a wall of rude. Did he see the fish then? No. Neither did whichever one of us was pushing the stroller, for the most part. That's okay, we have a local aquarium and slow days to visit.

In comparison, with my brother, there was always the stares. Those were painful on a different level, and you tried to learn eventually to tune them out, for your own sanity.

And who do you talk to about your child? To whom can you share your worries without wearing them out with your depressing negativity? So you gloss it over, give basic details to most people, and keep it to yourself. This is the hardest part, honestly. There's a serious sense of isolation, of feeling that nobody understands what you're going through and nobody knows what to say. Of people pitying you, feeling sorry for you. And you watch that angel of a boy with that devil of a smile, and you hope for the best. But you don't know.

Goodbye, Doug

When I first started the Dayton Slam at Canal Street Tavern in '99 (I think it was...maybe '98), on the first open mic list was the name Doug Collins. He was a somewhat older gentleman who had to leave early to catch his bus, but he wanted to read and he wanted to support what was going on. Doug showed up every month or, more recently, every show (however sporadic), with VERY few exceptions. Doug was a fixture, a regular, a supporter with no interest or dream of making the big time. He was there to support the poetry scene in Dayton. He would show up and read at other shows when there were open mic lists, and he would happily come in and read at other events if he was able.

Doug could tell you stories all day. His life was full of stories, and just a passing reference in a poem would get him sharing. He also showed up for any cookout or organizational meeting or get-together we ever arranged because he knew that a poetry scene relies on community, and he wanted to be part of the community. Not just the Slam one, either. Doug showed up to any poetry reading he heard of, ready to read.

Doug was in his 50s and had a few health problems a few months ago that hospitalized him for a few days. He'd been to all the readings since then, but I got a call today from Link. They found Doug's body in his room today, and I'm guessing they called Link because they found his number when they couldn't find anyone else's. He'd apparently had a heart attack a few days ago, and just like that, he's gone. He was the nicest person I've met in Dayton, never had a cross word to say about anyone, and now that he's gone, the city's just a little bit meaner.

Goodbye, Doug, and thanks for everything you did.

Why Terry Pratchett?

So I've just picked up my unread copy of The Wit and Wisdom of Discworld because I have read and own every Pratchett book out there, some in British release, most in American, a few from the Science Fiction Book Club back in the day, a number of them autographed by the author, so why read a compilation? Because I'm a completist, I suppose.

If you've not been paying attention, or if you've forgotten along the way (forgivable), I wrote my master's thesis on PTerry. But when did this start? Quite by accident, actually...When I was an early teen, or somewhere thereabouts, my Aunt Carolyn took my cousins, Tina and Tanya, and me to the smaller library near their home. I could check out three books, perhaps? I don't remember, but I do remember VERY clearly looking through the science fiction shelves and stumbling upon Douglas Adams. The cover made me pick up Hitchhiker's and Restaurant, which I quickly devoured. I might have gotten Life at the same time, but can't remember. I've read those books so many times along the way, after all.

A few months later, I was debating joining the Sci Fi Book Club, and I had a slight sci fi bond with a church member's fiance, a sci fi geek who brought the order form I could use to sign up, and he recommended several, but he insisted on Pratchett's The Colour of Magic. From the moment I picked it up, I had lost the battle, or perhaps found a deep love. PTerry led me to Neil Gaiman, indirectly, though I kinda knew who Neil was by that point, thanks to Sandman.

I don't know where I'm going with this train of thought, other than to be grateful to have found a writer who has kept my attention for so long (though I grew fatigued of his writings as I got through my thesis), and not just because he's funny (though he truly is), but because he knows how to write a thoughtful and meaningful series of books but doesn't have to rely on that series.

I hope my children can find authors who are equally meaningful to them.
Father, forgive me, for I have sinned. It has been five months since my last confession on here.

I have no idea...The big news is that I was laid off from my job of four years (with two more years with another branch of the company on top of that). No comments on the hows or whys or anything, just a statement that it wasn't performance related. I'm now applying for unemployment and looking for a new teaching or copy-editing gig. I even had an interview already. It'll work out.

Meanwhile, for those who wonder, Xander is doing wonderfully. He's finally gaining weight (22 pounds) and is still small for his age, but it's acceptably small and not worrisome to the doctors. He's full-force moving (still crawling) all over the house and getting into the no-nos faster than ever before. And he's such a boy, too.

So letter blocks from the living room and magnetic letters from the refrigerator end up in strange places throughout the house on a regular basis. He's finding the joy of toy cars and loves to roll a ball around. His favorite toy was from Amy's mom at Christmas: a circle track that spins. He puts the cars in it, but also his blocks and a rattle and, as of this morning, a heavy dog toy.

Zoey is on the border of reading country. She is reading quite a bit, but she's not all the way there yet. I think it'll be another few months at most. She's doing well in school and is considered a bit advanced in Kindergarten math and science and art. I think she's really well-rounded so far.

Amy's working her way through nursing school still, until March of 2012. She works all day on Saturdays (today) (24-hour shift), and I watch the kids. If the weather were warmer or nicer, we'd get out more on these days, but this winter has been white and cold, so we've mostly stayed in. But back to Amy...she's doing great in her classes (currently in psych nursing, next in cardio) and will make an awesome nurse.

I'm still waiting on the last of the paperwork to do taxes this year, and I've been doing a lot of wrap-up of loose projects around the house lately. I'm trying to do better at being the house husband for however long I am one. Resumes away, but it's nice to be home sometimes.

Writing has pretty much stopped. I've been too busy to write much of anything beyond a grocery list before grocery shopping. I have an idea or two for book-related writing, and I'm occasionally itching to write a poem, but I haven't bothered in months. Small children, I tell you, saps time more than you can imagine. Not that I'm blaming them for my lack of effort.

Life is really pretty optimistic, despite the occasional bad times. There is so much to do, though.

Pretending

I'd like to say I'll post here soon, but I'll probably forget. I forget everything lately in an attempt to remember the most important stuff: my father-in-law's health problems, my friend's health problems (and his taking back most of what he was going to leave me on his passing, so he could leave it to his nephew because his nephew doesn't have as many marketable skills/education as me and Amy), my work, my marriage, my son's (Xander) health problems, my daughter's need for attention, the new dog, the aging cats' health issues, the upkeep and cleaning and basic running of life, the dropping off of tons of stuff (mostly baby clothes) to Goodwill, and probably a dozen things I'm forgetting. I want to post, but I never think of it and never really have time. I've set up more time on facebook (as have most of you), but I want to come back here more often than I do. I'll try, but forgive me if I forget.

The Decade in Review

Ten years ago, I had moved to Dayton from Johnson City. I was living with Judy, waiting for the power to fail along with everyone else (thanks to Y2K), though I didn't expect any problems and didn't get them. I created and ran the Rust Belt in 2000 and '01, broke up with Judy, started over on my own, met Amy, divorced Linda (only married on paper), got my MA, married Amy, and moved to Chattanooga to be near my dad as the muscular dystrophy slowly sucked him down. I started teaching college English, wrote a book, had a daughter, moved back to Dayton, lost my brother to a surprise heart attack, lost my dad to the muscular dystrophy, lost my grandfather, had a son. Along the way, I performed a lot of poetry, wrote a fair amount of it (and much of my best), watched a lot of Floating Men concerts (not nearly as many as when I was in Johnson City), started and stopped the Chattanooga Slam owing to a lack of caring audience, taught a lot of college English, got my teaching certificate that I never really used, defaulted and recovered on my student loans, quit having so many cats and got a dog, and got so busy that I could barely keep up with family obligations, much less the poetry scene that I started.

I'm sure there's more. Lots more. There's all the material things I acquired or finally upgraded, but they're just things. The real joy (and frustration) is in the family I have. I want more and different things at times, but I don't have time or money to do them. That's fine. Priorities and all. I don't regret much of the last decade at all, except I wish I could make more money so I could care better for us. I never could find the secret of making money, except for getting a degree in something besides English.

In the next two years, Amy plans to finish nursing classes. After that, we'll be able to really care for this family properly and meet our obligations. Until then, things are going to stay difficult, but there's a goal in sight. I'll still be on the fringes of the poetry scene, I think, but I have children on which I need to spend my time. I have a beautiful wife on which I need to give lots of attention. Life is good at 40, and I expect it only to get better. Maybe that's overly optimistic of me, but I believe we're making the best of it. Eventually, we may even be able to save for retirement, but one thing at a time.

My Guitar Wants To Kill Your Mama

It's been a hella busy last several weeks, and lj has fallen to the periphery as I keep up with everyone on facebook instead. As I type this now, I'm sitting at home with snow on the ground outside. No snow for Christmas, but some a couple of days later will work.

In the last several weeks, I've been teaching so many classes that I was lucky to remember to be ready for each of them. The prep time between classes was nonexistent, so I did everything on the fly and graded into the night fairly often. It worked out, but it was a stressful term.

We also had Christmas, but I was so busy until two days prior that I barely had time to notice. Luckily, I'd done much of my shopping a few days before I got too busy.

On the home front, the boy's had some major acid reflux issues, and we've been trying different types of medicines to even him out. He's still a really happy kid, but he's acid-fussy sometimes, though I hope we've gotten a lot of that figured out. That said, he's made nights rough at times. Then Zoey has made nights rough as well. Between the two of them, it's been bad for the sleep schedules (more for Amy than me).

Zoey's had/having some different issues with attitude and with not wanting to do everything she can do on her own. I suspect that much of it is trying to get attention in a house with an infant. Can't blame her too much. Even the dog is vying for our attention, and we don't have much of any to give even to each other.

Amy's mom had a nasty fall a couple of weeks ago and broke her ankle bad. She's in a cast and still recovering for a while, but is doing well overall.

Christmas day was a nice family occasion. We opened our presents (I got very little, but only because I had maneuvered to spend all my Christmas and birthday gift money and one of my bonuses on a new TV and blu-ray player), then went for the third year in a row to the Newport Aquarium. It was so nice to spend time with Amy and the kids and not have my attention divided by work or anything else.

On the way, we stopped at a gas station. Zoey saw a lady and a dog in an SUV, and she asked what kind of dog it was. I said I didn't know, and she said, "I think it's a yorkiedopteryx. Yeah, it is. I've never seen a yorkiedopteryx before." I sagely said, "Me, either" and smiled to myself. Zoey's so busy trying to figure it all out, and she's doing amazingly well. She just occasionally slips and says that her favorite planet is Canada or something similar. Everyone keeps telling me to write these down, but it's hard to remember them all.

Earlier today, for example, Zoey said "Spongebob and Patrick are just so darn it silly." I can see her working the language out in her head. I can also see her drawings improve, even if every picture she draws of Amy has a smiley face on the top bubble and a smiley face on the middle bubble (the one with arms and legs off of it) because she's carrying Baby Xander.

Zoey's also loving school now, except she's having trouble with some of the politics involved. The girl she wants to be friends with is manipulative and mean, so Zoey has to struggle with why that girl won't be nice. It's hard to figure out, and Zoey's so sensitive anyway. Other than that, she's really liking school.

Speaking of, Amy returns to nursing classes (yay nursing program) in just a few more days. Two years after that, she'll be done and working for some real money. Of course, that adds a real complication to an already-ridiculously-busy schedule, and I foresee some adjustment pains, but it'll work out in the end.

Gonna go work on dinner for a bit. I'll try to be back someday.

Transitioning

Ah, life. So many things change, and I'm just overwhelmed with it all. But in this house, who isn't? The dog acts like nobody pays any attention to her, the cats are neglected at times (especially in the mornings), and Zoey is tired from school most of the time. She's done well with Xander so far, but the newness is starting to wear off.

Xander isn't sleeping at night really well yet, though he has some good nights. If we can get rid of the thrush, it'll help a lot, but sleep is a semi-precious commodity around here on most nights.

I picked up a new (reconditioned) HP Pavilion a few days ago, a great improvement over the system we had put together in '02 or so. Yeah, Mike, we were still using the one Jack put together, with only a graphics card upgrade along the way. Now we're almost modern. It's not super on gaming graphics, but I don't use my system to play games, so that doesn't bother me. That's what the Wii is for, and I don't have time to play it, either.

We also got new couches, finally, as the last ones were five years old and cheap from Big Lots, aka, broken down. The new ones are better quality and comfy.

Work continues on schedule for me, though Amy is planning on not really returning to her work. She is going to ask them to put her as a sort of on-call person so she can work as she wants. That means we transfer the insurance to me and hope we're making enough money to live on. As Amy points out, though, she can't take care of the kids AND go to nursing school (she returns in January) AND work. We'll just have to make do.

It's all in transition around here. We're doing fine, but we're all somewhere between stressed and freaked out. I can't remember anything small...I remember my appointments and when to be where and what is due to be done, but Amy can ask me to pull the gate shut as I leave, and I'll remember until I put the car in reverse to back out, and then my mind goes blank. I'm too busy and too confused to remember the small stuff, I think.

Xander is such a different child than his sister, though. He's so calm and laid back, while she's quite the "Type A" personality.

More soon, if I remember.

Welcome to the World

On Monday at just after 6 AM, Amy woke me and said, "I think my water just broke." It did. We weren't ready, not quite, and he was early. We had gone the weekend before to Babies R Us for the things we still needed, and I'd just washed and vacuumed the car out so we could put the car seat in it. So Amy put the seat in the car as we waited for Amy's mom to arrive and watch Zoey. We packed stuff and headed for the hospital.

I dropped Amy off and parked the car, then headed in. I found Amy in the temporary area, and we did the check-in process. We ended up walking for a while, and I went for lunch at the hospital. Later, we got a room. Amy was attempting a vbac (vaginal birth after caesarian), so they gave her a small amount of pitocin, though they were worried that it wouldn't go so well. Her nurse was really skeptical, though she didn't really say a lot about it. When Amy said this was the last one, and that one of us plans to take permanent measures for that. She would say things like, "You know how permanent that is, right?"

After 4:30 or so, Amy had the epidural. She was awfully uncomfortable, and they said if there was no change by 6, they'd do the c-section. She dilated from 2 to 7 between 4 and 5:30, and she finished dilating soon after. With a fair amount of pushing, she managed to deliver. Dr. D'Amatto used the vacuum to help him out, 3 pulls and 1 pop-off, and he arrived. He had his umbilical cord around his neck, but it was snipped quickly, and he was cyanotic. They declared his APGAR score an 8-9, though, which was really good, and he was cleaned up and given to us.

7 lbs 13 oz, 20 1/2 inches, 7:01 PM on August 31. The doc's office thought he was 3 weeks and a day early (making him a preemie), we thought a week less, and the test done to determine such things said 39 weeks (a week under). He's amazing. William Alexander Abbott, called Xander.

In the early morning hours, we were finally moved to a recovery room, which we leave in the next little bit. I've been in and out yesterday as I took care of Zoey. Today, Zoey's at her first day of preschool, and we're hoping to be fully home in time to go get her together. We'll be going home soon, though.

Xander cries a lot less than Zoey did. He's a cute kid. As the delivery continued, the drama unfolded on facebook's comments section, along with everyone's replies. I'll try to get back on here soon and post a few pictures, and more of them will go up on facebook.

In the last 3 days, things have changed in a tremendous way.

Tags:

Rule #1: Babies Cost A Lot

Life has been really hectic, and blogging hasn't been a priority. Work's been full-speed ahead, though things have worked out better than expected in some ways on that front. Of particular note from last Thursday was the school's carnival for the students. I volunteered for the dunk tank, as did more than enough others, so we had penny voting to see who would end up on the tank. I wasn't the big winner, but they took the top five, and I had a student or two who brought in Ziploc bags full of pennies, so I was chosen. I had a blast being the target, taunting everyone and occasionally hitting the water. Really, I'd do that again in a heartbeat.

My favorite comment Amy overheard was "He's not like that in class." No, I'm not. There's a difference between one's personal life and one's professional life. My favorite comment from Zoey was that she asked Amy if there would be sharks in the water.

Amy and I have both thought (individually) recently that she's done really well in this pregnancy in that she's not gotten sick, and now she's sick. She picked it up from work, and she feels terrible. She'll go to the doctor tomorrow, but until then, she feels awful.

Amy has had a really rough time with this pregnancy, though, all the way through. She commented on facebook that if Zoey had been this bad, we'd not have had a second child. I believe her...She's consistently felt bad this time, and at times (especially recent times), she's been miserable.

Baby Xander will be here soon. The due date is September 22, and the c-section date, in case she hasn't delivered, is the 28th. However, we're both thinking it'll be earlier than the 22nd. Her body's much farther along than it was with Zoey, so we're suspicious as to the odds.

Zoey starts preschool on Wednesday, and she meets her teacher tomorrow. Of course, I'll have to work, so it'll be hard for me to go with her the first day, but I'd like to.

Friend Dave from work helped me go to Babies R Us for the glider rocker this time. We got a great gliding chair this time, one of the expensive ones, on clearance, and we needed a full-size pick-up truck to get it, so Dave agreed to help. After we got it, Amy turned the box into a playhouse for Zoey, which she LOVED for a while, though now she's lost most of her interest in it. It was a blast for a couple of days.

We went yesterday for baby shopping. Since the due date is so close, and since Amy's work shower was less than thrilling, we had to buy a lot of stuff on our own. We spent close to $600 on baby supplies yesterday, and yes, I'm glad we kept everything from Zoey. There was so much we needed, from boppy covers to baby towels and washcloths to a nursing stool to...We had already bought baby car seats and the chair and such, so it wasn't a total amount due, but it was most of it. From here on in, at least for a while, Xander will mostly just cost us in diapers and clothes and the like, so the worst of the buying is over for now.

While we were buying yesterday, we got Zoey a new toy so she'd feel like it wasn't all for her brother (we're hoping to cut down on the jealousy thing), and she picked a Barbie play guitar that talks to her and plays different songs, most especially "Girls Just Wanna Have Fun." She really enjoys it. Last night, when she was in bed, Amy told her it was time to go to sleep, and Zoey whined/asked, "Can I rock out just one more time?"

We've tried some movies from the library lately, but nothing lately has been an exciting choice. I dunno, maybe we're just in a movie wasteland right now. Oh, we did finally see Watchmen, and it was brilliantly faithful to the comic, but neither of us were really satisfied with the ending. I don't know, it just didn't quite work for us. I loved how faithful it was, though.

Not much else to tell right now. I'll try to do better on this updating stuff.

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Bill the Slam Guy

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