Wednesday, November 30, 2005
I don't want to do this again. Isn't once enough?
I keep trying to be positive you know - trying to convince myself that lightning can't strike twice. But lightning has struck again. And I want to believe that life (or fate or god or whatever) can't be cruel enough to take another one of my children from me, but the truth is, it may very well be just that cruel. And I'm torn between facing reality and keeping hope.
And you know what? It's just fucking wrong to have to contemplate the possibility of having to plan a funeral for one of your children, let alone your second child - and within weeks of Christmas no less. And it sucks to have to accept that as part of your reality, and then feel guilty for thinking that way, and beat yourself up for not thinking more positive thoughts because you know that you'll feel responsible if things go wrong. And there are no answers, let alone good answers or right answers, and there are no choices because you're not in control. And it's fucking wrong that as a mother, you have to accept that you can't fix this for your child because this isn't some little booboo to kiss, no scraped knee that you can love away.
And I want to let go, to break down, to feel whatever I feel and react to it however I need to but I can't because I'm afraid I'd never get back up. Afraid that people around me would think I'd gone insane. And I want to give myself permission to be depressed - and I just want to stop having to go on like everything is just fucking dandy. And I can't, because I have to be strong enough to survive, strong enough to be here for the other kids through this, strong enough that Scott doesn't have to hold me up, because he's going through the same things I am and it isn't fair to expect him to be some superhuman hero who puts aside his own fear and pain to drag me through mine.
You hear people say how they found themselves in some bad situation, hoping it was just a dream, wishing they could just wake up and realize that it was all just a trick or a joke or a nightmare, and it's become almost a cliche - but it's surprisingly possible to find yourself in that position. I spent months after Alexis died wishing I could just wake up. Months of mornings spent re-digesting reality, re-accepting her death. And here I am again. With every kick and hiccup, every mad dash to the bathroom, all those things that make a pregnant woman sort of grin and rub her belly and think of tiny little fingers and sweet newborn smiles - all those things that should make me look forward to next week just remind me again that this baby isn't OK, that this baby may never come home. . . And I just want to wake up and realize that it's all a bad dream.
Truth be told, I don't care so much about my blog being bland right now - the worst part of this is that I can't check my poeticacceptance.com email account, and it's one of my 2 main accounts - actually, it's my main main account. So if you email me and I don't respond, that's why. If you leave a comment here and I act oblivious to it, that's because I am - my comment notification goes to that account too.
Finally a day without doctors -
this time next week I'll be a mother
but for how long, they can't say.
No magical medical prescription
can answer that question.
You know, there is no passion
in the coming of the Carolina winter
just sudden cold whispers and
a subtle change in the flavor of sunlight
from peaches to pine,
and my chest seizes at the passing
of another week - onward into December.
Tuesday, November 29, 2005
Have you guys discovered Blog Lines? I freakin' love it, I go there to "my feeds" and read all of your blogs from one spot. However, I have to admit that I feel a little guilty about reading your blogs without actually visiting them. You should all change your blogger settings to show only the first bit of each post rather than the whole thing.
I finally got some antibiotics for this thing I have. I'm pretty sure it's a sinus infection, and the coughing is caused by the drainage. The doctor gave me an Rx for Z-pack without even testing me for anything, mostly because I all but begged I think, but also because I emphasized that if I'm sick when Donovan's born, I won't be able to visit him in the NICU. I think she didn't want to be the one responsible for me not being able to visit him, you know, just in case. This Z-pack must kick ass though. (Yogurt. Must remember to eat yogurt...) You know how antibiotics usually work, 2 or 3 a day for like 10 days? This stuff - I took 2 pills today, then 1 pill a day for the next four days. That's it. Guess that way she figures I'm done with the full course before he's born. That works for me. Maybe I'll sleep tonight, god I hope I sleep tonight! I had a very nice nap when I got home today. It was good to sleep... sleep is good. I miss it.
My stomach does tricks y'all. It dances and stuff all by itself.
Let's have some fun with math eh?
I'm 37 weeks and 5 days pregnant, I've gained 22lbs. At the ultrasound they did all their magic measurements and said he weighs 5lbs 13oz right now. But my god! I caught site of my profile in the mirror today. I have never been this big. I'm freakin HUGE! So I decided to measure my "waist" this afternoon. Normally it's 26" - it now measures 39 1/4"!
All these figures add up to my seriously round figure, which resembles something from a funhouse mirror. I'd post a picture, but, well... no. :)
Monday, November 28, 2005
And they looked back into Alexis' chart and saw that she WAS tested for Di George Syndrome after all, and it came back negative. That means that most likely, Donovan is negative too, and we won't have all the other complications associated with that to deal with. That's a huge relief to me, not only for Donovan, but for my other kids and their kids.
We haven't heard anything from Randy yet about his tests today, but I figure they have to wait for results. I'll let you's know.
So it's back to the Ob/Gyn tomorrow. She was at the consultation with the cardiologist today at the Women's Institute - I wish she could have just done it all while I was there. I despise driving into Charlotte. It should take about 35 minutes to get there, but normally takes more like an hour and a half - and that was BEFORE the holiday shoppers were added to the traffic mix. In other words, in order to get there by 9am for my appointment tomorrow, I have to leave home no later than 7:45am.
That's before 2 of my kids are even on the school bus.
And you know, Charlotte presents itself as a wealthy, well-to-do, beautiful city... The nations second largest banking and financial center... A "World class city with small town charm." The taxes are through the roof, and there is constantly road construction - why do the surface roads suck so bad?! Holy Hay-soos, by the time we get where we're going, I'm pretty well convinced that Donovan has been shaken out of me and I'll have to catch him when I get out of the truck!
Anyway, I have 3 kids in school, and FOURTEEN teachers between them. I try to show my appreciation for the kids' teachers, and the kids really enjoy giving their teachers a little something (and I DO mean a LITTLE something) but somewhere along the line we went from 2 teachers per kid to like, a lot more than that. Guess that's what I get for letting them go to middle school eh? So thank goodness I'm a bargain hunter from Hell. And I'm sure they'll have a little giggle over it if they all compare their identical little gifts, too. I mean, while I appreciate all they do, I haven't got the money or motivation to spend a bundle on them, so they all better get that whole "it's-the-thought-that-counts" thing.
So I'm still waiting for 3 more gifts to arrive via the Postal Express, so I can wrap them and then I'm good to go - at least as far as the kids go. I still have some adults to buy for. I hate shopping for Ma. She's one of those "I'll love anything you get me" people, which makes it impossible to find something special, know what I mean?
Sunday, November 27, 2005
A little day trip preview I guess. Hope it doesn't snow. I thought they had to go last week, and it was snowing in Troy that day, not sure about Boston. Silly me sat here worrying about them until she emailed me the next day and told me that it was THIS Wednesday.
He goes tomorrow to his regular doctor for a bone marrow aspiration so they can see how he's doing on the chemo and Gleevec. The idea of that bone marrow aspiration absolutely makes me cringe. They say it's very painful, and he has to do it regularly. Anyway, we expect to hear good news from that because he seems outwardly at least to be doing so much better.
I go tomorrow to talk to the pediatric cardiologist about the "probable course of action" with Donovan. I realize they aren't going to be able to give me anything concrete until he's born and he's had his ECG and possibly a cardiac catheterization - but I'm hoping I'll feel a little better being able to put faces with names and shake the hands that I'm trusting to save my son's life. There are only 10 days now. A month ago it seemed like I had forever to go, now suddenly it's going so fast.
Tuesday it's back to my regular doctor for my weekly poke-n-prod. I'm glad I have a little bit of knowledge and the nosiness to ask about things when I'm in doubt. The new doctor wants to make me redo all these tests and stuff that I've already done with my other doctor. I've saved myself all sorts of torture by being able to say, "I've already had that test!"
We haven't told the kids yet - we just didn't see any reason to make them worry and be afraid and helpless for weeks like we we do. I just don't know when we will tell them. Before he's born or after? I don't know. Probably after when there's something more solid to tell them. It all gets so complicated and touchy, and there just aren't any good answers.
And I've got to get over this cold or whatever it is I have, or I won't even be able to hold him when he's born.
This week's marks the FORTIETH EDITION of the Tarheel Tavern, and it's kickin' it over at ...Slowly She Turned and the place is packed! Looks like everyone came for the big occasion. As usual, there are some wonderful posts there - you should squeeze yourself into the standing room only crowd and take a peek.
Born between December 1 and 10, 2005, your baby will possess a sense for the supernatural. Will be romantic, dreamy, and endowed for the arts. Tendency to pessimism and discouragement. Weak sense of reality. With his soft heart will always feel the need to help and to serve. Numerous difficulties in love life. Vulnerable to cardiac palpitations and cramps.
Now like I said, I don't believe in the shit, but it's an interesting coincidence.
Saturday, November 26, 2005
Winter has settled in, claustrophobic grey
over a carpet of leaves I never bothered to pile.
I've left them to do their whispering in peace.
It looks like rain, and it's cold.
The mailman hasn't come yet;
the difference that makes is none.
Last night I dreamt my father called
to say that Noah's Ark had run ashore,
empty save one gender-balanced pair.
He said the olive crop was poor this year
and the dove can find no branch
that can bear the long trip home.
Friday, November 25, 2005
See? I warned you that the pictures would suck didn't I? But hey, we're showing the Christmas spirit, and that's what counts. You should see the neighbor's house. It looks sort of like they drove some nails into random spots around the roof line and threw the strands of lights at them from the ground. But hey, they had theirs up BEFORE Thanksgiving, so they get bonus points! I'll have to try to remember to go tell them Feliz Navidad.
Thanks to Laurie I found a new holiday of sorts, and I observed "Buy Nothing Day" it today by, yup you guessed it, buying nothing. Nothing new there, I never go out on Black Friday, seriously. I just think it's cool that there's such a thing. Apparently, it was first observed in '91, by some smart progressive-minded person. *applause for them*
Now I'm off to pillage through my leftovers from last Christmas and see if I have any wrapping paper left so I can get started on wrapping. If not, I'll have to go tomorrow (when it isn't Black buy nothing Friday) and buy some!
So we cooked, and cooked, and cooked. Nope, Erin - I didn't leave in the giblets, not this year anyway ;)
The first time I made Thanksgiving dinner on my own, my first husband's parents were in town for the holidays and I was "entertaining." I thought things had gone amazingly smoothly until my father-in-law started carving the turkey, while I loaded up the table. I knew we had a problem when he (and everyone else) started laughing hysterically. I could have cried, I was so embarrassed.
Anyway, yesterday came with no surprises and no disasters - mainly because my mother did most of the cooking while I tried to decide whether to I was going to survive this "thing" I have. It can't be the flu because I had the flu shot a few weeks ago, but I'll be damned if it doesn't feel like the flu. I'm still feeling pretty rough, but I'm not so bad today.
I have a knack for getting sick on holidays. Not just the sniffles either. One Christmas (about 10 years ago now) I actually slept through Christmas, and the following 2 days because I was so sick.
Anyway, while I suffered and Ma cooked, Scott hung lights and decorations out in the yard and around the eaves, which we lit as soon as it got dark. Then we ate, and ate and ate - then we put up the tree. I still haven't finished the inside decorations, but I worked on the tree till damn near 2am. Maybe I'll take pictures later and post them, but fair warning, I'm a lousy photographer.
I wish I could stop coughing, I've coughed till I'm sore and still keep coughing. And I'm so damn thirsty!
So I hope you all had a great Thanksgiving, giblets and all, be they cooked in plastic, or in gravy :) And I sincerely hope that none of you are nuts enough to be out shopping today! You couldn't pay me enough to go out today. The traffic, the crowds... nuh uh!
Now I'm off to reply to all my neglected email and comments.
Wednesday, November 23, 2005
That's the official date, the day Donovan will be born. I go in at 8am for an amniocentesis to ensure that his lungs are fully matured, then off we go to delivery, with the blessed addition of an epidural. My seventh labor and delivery, my first epidural. For the record, that huge amnio needle scares the hell out of me, but I figure there's enough to be frightened about right now, so fuck it, skewer me, I don't care, just give Nova the best chance he can get.
I really like my new doctor. She's very sweet, very professional, and has some sort of magic when it comes to bedside manner. She had no miracles to offer me, told me I'd be delivering 2 days earlier than I thought, because they want several days of the cardiac specialists being in the hospital in case Donovan is in really bad shape and needs the surgery immediately, or needs some special hands-on care from them (apparently, they take weekends off) then she added the joyous news of the amniocentesis, and yet, somehow, she made me feel at ease, comfortable even. I figure that was pretty damn good considering that I was fighting tears the whole way there. It's weird, I can keep it all in check at home, but something about going to/being in a doctor's office sets me off. I cried for 3 hours straight at my last appointment.
I pity the doctors, and Scott too, especially Scott, for all that I'll put them through on December 7th. I already warned Scott that I'm going to be a mess, I just hope that I'll be able to support him half as much as I know he'll support me that day. He isn't exactly the emotionally demonstrative type normally, but he's good under pressure, bless his heart. Out of compassion, I won't ask him to be there for the amnio though, he's not real good with needles
Tuesday, November 22, 2005
Now don't get me wrong, if there's something you want or need to say, something heart-felt and sincere, wonderful, say it. But not stuff like "everything happens for a reason" or some religious thing about how they're in a better place or whatever, ok? Someone said to me the other day, "God gives special children to special mothers" followed shortly by, "Well, He must know you're very strong, to have given you not one but TWO children with these defects!" As if this was a badge of honor I should wear. Know what's sad? I was talking to a therapist, a THERAPIST for fuck's sake. Where'd she get her little therapist license? K-mart?! Christ.
Yes, I'm angry tonight. I don't know why tonight more than last night or this afternoon, but I'm seriously just pissed off. Probably because I go to see the new doctor tomorrow and find out a definite date on the induction, which terrifies me. My reaction to fear is anger, always ha been. Never never jump out of a dark corner and scream "boo!" at me, because I will punch you in the mouth, cuss you out, and not speak to you for a month, because that shit just ain't funny!
Damned adrenaline or some such thing I guess.
Anyway, my point is that you folks, most of whom have never even met me, have been more intelligent and caring than that stupid woman. A therapist said 2 of the worst things I can think of in regards to my son's heart defects.
Let's be honest people, ok?
My son might die.
That has no bearing on whether I'm special or not, it doesn't make me strong, it makes me what? ...unlucky? cursed maybe? but not strong. And I refuse to believe that, if there even IS a god, that he goes flipping through the big book of people looking at the "S" section (s, for strong and special) deciding who he's going to drop the bomb on.
The truth is, I'm doing whatever I'm doing because there isn't much other choice, because I don't know any other way to do it. If I could stop it all right here and right now, I would. I'd hold my breath and stomp my feet and refuse. I'd stop the sun from rising if it meant my son would be ok, and the hell with how it affected anyone else. But there's nothing to be done. This isn't a sign of strength or specialness, it's resignation, or, well, as I like to call it:
Monday, November 21, 2005
Last weekend we weeded the garden. It had been sorely neglected over the latter, hotter part of summer and early fall. It was more a brush and briar patch than a garden - all the flowers and bushes choked out by the heat and lack of rain and neglect and rampant crabgrass. Mid November, and it was in the mid-seventies. We wore shorts and tee shirts and sweated. It was unnatural. But over the last week, autumn seems to have finally settled in and gotten comfortable. Today was cold and wet and there was thunder. We went Christmas shopping and wore winter coats, and walked a little faster across the parking lot in an attempt to get out of the biting wind gusts.
I hate cold weather, winter has always been my least favorite of seasons, but today, in the midst of everything that has gone crazy and oh-so-wrong in my life lately - today the cold and wet and dreary just seemed fitting. It seemed right.
So we finished up the biggest part of holiday shopping. I've never felt so driven to get Christmas planned and settled - it's like some sort of mission I'm on. Part distraction, and part reality I suppose. In a few more weeks I'll be in no mood for shopping or decorating. So we came home and sat at the window and watched as the rain ran down the driveway, and the leaves danced down their little mini-river to the beat of thunder rumbles. Then, we rearranged the livingroom in preparation for the tree and decorations that we'll put up on Thursday evening and Friday. Tomorrow I go to the Women's shelter and drop off our Thanksgiving dinners, then we'll finish stuffing the stockings, it's all that's left to be done really. You can feel the kids' anticipation building, the excitement is amping up as the holidays approach., but I feel sort of robotic about it, detached.
I hate that I can't feel it or participate more. It's like watching those leaves dance outside my window - through the glass, separate, seeing but not being able to touch.
Sunday, November 20, 2005
Heard the Word of Blog?
Also, we're looking for future hosts, Jane was the last one we had lined up in advance - so please, if you'd be interested in hosting, now would be a great time!
Friday, November 18, 2005
There is no legal basis for a lawsuit, and she has no foundation on which to stand when trying to force a retraction.
I think the EFF site is probably one of the most valuable pages on the internet for anyone who blogs. It deals with every legal issue I could think of as it would apply to bloggers - including the issue of blogging about work, which has become so hot a topic anymore that people hesitate to mention that they HAVE a job, let alone where or with whom they work, for fear of termination.
And to top it all, they're an organization that includes lawyers who are dedicated to the protection of bloggers' rights, and in some cases even represent the blogger in a lawsuit. They're currently having a fund raiser, which is actually how I found the link to them, and if I could afford to join right now, I'd do it. As it is, they're on my list of things to do after... Well, sometime at the beginning of the year.
hat tip: taking the brim
Thursday, November 17, 2005
Tuesday, November 15, 2005
Poetic Acceptance, my chapbook, has apparently been put out of print as of today by way of the unlawful termination of my contract by my publisher Shaela Montague Phillips at Meeting of the Minds Publications/Chapbook Enterprises. The "buy it now" button has been removed from the Chapbook Enterprises webpage despite the fact that our contract stated that in order for it
"to be considered out of print, no copies will have sold for a twelve month period, or the request shall be made in writing and agreed upon by both parties."
My book is listed as
"not currently being sold"(click the above screen shot for a good view of that fact) after only 6 months of availability. There has been no written request or mutual agreement to terminate said contract, nor has there been a written agreement to put Poetic Acceptance out of print.
Also, for the record, despite her promises over the last 24 hours, I've not yet received any payment of the royalties which I was supposed to have received in July of this year. I've even provided her with my Paypal information in order to expedite and simplify that process.
My advice to anyone considering a contract with this company: Don't, unless of course you're looking to begin your publication with an education in what not to do.
Some people man, I'm telling you. But that's ok, keep my mind busy for a while, I'd rather be angry like I am now than in the terrified depressed state I was in just a matter of hours ago.
I don't even care at this point if I just sound angry and bitter or whatever it is I sound right now. I read this phrase on another blog today that goes something like this:
"I'm not the grits to fuck with tonight."
I found it amusing at the time, I find it highly appropriate at the moment.
The latest edition of the Poetry Carnival is up at Legwarmers, and it's very well done. She includes very considered commentary on each entry - well worth the reading.
If you'd like to join the bi-weekly poetry blog carnival, click the graphic and use the google groups sign up form there!
Monday, November 14, 2005
Go ahead, click the link, reread the post, and PLEASE, read her reply as well.
In said reply, you notice that she seems unhappy with my comments.
V. intr. InformalNow, I may admit to "harsh" but I didn't accuse anyone of anything, or threaten anyone in my post. I simply stated truth and facts.
To engage in harsh, accusatory, threatening criticism.
"As you know we have had problems with our press in which we just had to change. Which explains why I was unable to get your books produced."
"So please explain the full truth to your audience."perhaps I should reconsider that choice, and make public the excuse that she DID offer me.
"...In fact, I called you in which you failed to respond to my phone calls."Again, I'll admit that I haven't returned her calls, and even admit that tonight I chose not to answer the repeated back-to-back calls from her because to be honest, I don't think I could muster a civil reasonable conversation in light of the present situation with Donovan and the emotional state I've been in the last few days. I couldn't manage a normal conversation with a doctor today without falling apart, I know damn well I'd have lost it talking to her tonight, and decided it best to avoid the confrontation. I won't apologize for that decision. If she REALLY wants me to tell the whole story, all she needs to do is leave a reply to this post to that effect, and I'll be so completely honest as to post ALL of our email back and forth since I started insisting that she pay me what I'm owed.
In her voice mail she says she has decided that the best thing to do is to end her business relationship with me.
Now, I'm no lawyer, but I'm pretty sure that a contract is binding, for the entire length of said contract, whether she's happy with my sharing the truth of the situation or not. Not that I'll argue with her, I'm more than happy to end said contract - IN WRITING, thank you very much.
And just as a little personal aside, I find her attitude with me rather amusing (especially the tone of her voice mail) when I'M THE WRONGED PARTY!
Sunday, November 13, 2005
They want to induce, which means no C-section, which is a good thing, I think, sort of. I mean, I really am afraid of what an emotional wreck I'm going to be through labor and delivery, but I'm also a huge wuss about surgery. I don't like the idea of being cut on. But then, a C-section is quick and allows for much less freak-out time. But then, at least I know that with an induction, I'll be there in plenty of time for pain meds, unlike the majority of my children who've been born sans meds because I get there and deliver so quickly that there's just no time for meds. But then again, who knows if they'll even be willing to give me any meds under the circumstances. I guess that would be a question for the unnamed faceless mystery doctor eh? I'm praying for an epidural! I've never had the luxury of one of those, just demerol once. Yup, once, out of 6 deliveries, and that was 16 years ago. OK, I had demerol with Kory too, AFTER he was born...
And of course, this is all on top of the list of unknowns as far as the severity of Donovan's cardiac defects, the timing of his surgeries, the possible other complications he may be facing, how long he'll be in the NICU, and ultimately, the outcome of it all.
There's my tubal ligation, which the schedule for is already screwed up because of the induction and hospital switch, then there's Christmas, and not knowing what's going to be going on at that point.
Speaking of Christmas: You know it's 2005 when your kids email you their Christmas list, and they live in the same house with you!
We've been trying to get some serious Christmas shopping and planning done between now and the delivery date. We just don't know what's going to be going on. We're usually horrible procrastinators. I mean, it's November 13th, and we consider this early for Christmas shopping. We just want it to be done by the 8th (or whenever they induce me) so we don't have to worry about any of it after Donovan is born, since to be honest, if it isn't done before then, they'd all likely do without.
There's honestly only one thing I can guarantee. When Alexis was in the hospital, my mother made me feel guilty about spending a lot of time at the hospital with her. According to her, I had "other kids at home that needed me too." She only lived 12 days. We were together the entire first 24 hours but then they took her to the nursery and kept her for the next 12 . After that she was transferred to CMC, where I spent maybe 10 hours total over the next 9 days thanks to my mother's guilt trips. I'll never stop regretting that I didn't spend more time with her, and I guarantee, I'll be spending every possible moment with Donovan.
I have to be realistic and face the fact that he may not make it through all of this, and I'll be damned if I'll take the chance of having to bury him with the same regrets I buried Alexis with.
Saturday, November 12, 2005
We all want to fix this, and there isn't a thing we can say or do that will accomplish that. So please, don't mistake my silence for a lack of gratitude or caring - I just don't have the energy to put them together in pretty little lines right now.
Most likely, when I do say anything at all it will come out wrong and I don't want to hurt anyone's feelings either. I'm just as likely to say the wrong things here as any of you. So I'll probably keep myself busy with silly shit that means nothing, link fests or mindless posts, interspersed with bits of anything we find out. Just stuff to let you guys (and myself maybe) know I'm still alive.
Love you guys... and I don't care if that sounds silly.
This is his little face directly in the center of the picture. I don't know if you guys can see it very well, but he looks like he's lying on his side looking directly at you, his chin is to your left and the top of his (apparently hairy) little head is to your right. Still don't see it do ya? OK, see the large black blob toward the bottom? OK at the highest point of that is his left eye, then above that is the bridge of his nose, then above that is his right eye... maybe I should go make another copy of this with some labels!
And this picture is called "Boy" for a reason, because I know how many blog surfers are looking to see some private stuff, if you know what I mean. How do I explain this one? If you look you can see, in the bottom of the picture, centered left to right, something that looks sort of like a turtle, yup that's it. If you can't quite get it into focus, let's just say he's aiming to the right.
I searched there then, for a life, unscrambled, but was lost instead in a spiritual struggle, embodied by silent songs to a midnight sky, convinced that all I'd accomplished was to have become a sappy chick, searching for the right combination of contraptions beyond my own making on which to blame it all.
So, with pen in hand, I beat out a blue tattoo, my cadent rhythm of netinous music for the absent audience in this Moontown cafe. I found an elicit beauty there in the scribblings and flawed melodies recorded only in a tattered spiral notebook. It's not much, but it's me, a screaming she weevil with no answers to proclaim - following the shadowed trail left by the passing of strong women and whiskey that whispered warnings against my hope that something sublime could find me here, in the after effects of an English August that has served no purpose.
I pray that I will, just once, create complete and utter poetry, but knowing myself and being aware of my abstract tendencies, I expect something less wonderful and more simple, like waitress poems composed while reveling in joyful cliches, like legwarmers and too much hairspray. I realize now, despite my acceptance of life as it comes, I'll never be this century's romantic notion, I will never be found irresistible while writing poetry in the afternoon.
I am left only with the hope that like Chanticleer, I will survive a second playing of this cruel ruse that threatens to break me in the sly maw of my universe.
I started this link fest of an entry a week or so ago, thinking it would be amusing to see how many blog titles I could pull together to create something somewhat coherent. It has spent several days now as a draft. I couldn't concentrate on it - but tonight I needed to do 'something else' if you know what I mean, so here it is. It lacks the coherency and cohesion I'd hoped to come up with - it doesn't say much at all really, but it was an effective distraction.
Friday, November 11, 2005
We also spoke to a geneticist. They want to test us all after the birth for a chromosomal deletion called Digeorge syndrome (or 22q11) because the recurrence of these particular congenital defects is a red flag for it. Apparently, this can also come with a lot of other deformities in the immune system, the palate, the facial characteristics and other physical characteristics, as well as causing mental retardation or learning disabilities and deficiencies in the immune system. None of those things will be known until after birth. I have to do more research on it, but just what I've read so far... for Donovan's sake, and for my children's children's sake, I pray we aren't facing that.
What sucks is that if it IS digeorge syndrome, the first indication should have been 8 yrs ago, when my son had stomach surgery, because apparently pyloric stenosis is also an indicator. At the very least, when you combine the pyloric stenosis with the heart defects that Alexis had, someone should have realized that digeorge syndrome was a possibility. No doctor has ever put the pieces together and realized the possibility until now. Why?!
They did give me a super clear shot of Donovan's little face on today's ultrasound though, I'll post that later, and maybe some others from other ultrasounds. I have 2 of his 'maleness' that he seems more than proud to display for the camera.
Anyway, they're going to induce labor early so they can control when he's born - they want him born during the day, a weekday, so all of the pediatric cardiologists are on site when he's born. The doctors at The Sanger Clinic (the cardiac specialists) couldn't save Alexis, but I know that they're the best around for what we're up against. And the children's hospital and NICU department at CMC is amazing, so at least I can say that he'll receive the best care possible from the second he's born.
I'm trying to be positive, but it's hard after Alexis, hard to believe that this can have a happy ending, and hard to allow myself the luxury of thinking everything will be ok... or at least as 'ok' as is possible with the situation. I'm terrified and confused and I dread the emotional state I'm going to be in during labor and delivery, knowing that as long as he's in me, he's ok, but once he's born the defects make the decisions and the danger really sets in. Plus, we may be facing a whole other set of challenges that we know nothing about yet if this is Digeorge syndrome.
Someone (someone really wonderful) emailed me and let me know that I could vent to them about the unfairness of it, or rant and rave and vent the anger. I can't get there yet. After Alexis, the anger literally saved my life. I hope I find the anger soon, before I lose my mind.
Thursday, November 10, 2005
In other words, the doctors are being more optomistic. They're also feeling less rushed, the race against the clock is slowing a little bit, so he has a little more time to find a match in the registry.
I'll take my good news where I can get it, and I really feel like some of this good news is a direct result of the power of positive thinking and good thoughts that you guys have all been sending him. He still needs the transplant, he's still sick, but it isn't as bad as it was just 2 weeks ago, so thank you all for all you've done for him, and for the whole family.
Now I'm just stuck here in this partial knowing, waiting. I'm just trying to grasp it, accept it, but that's hard to do without knowing exactly what I'm supposed to accept. I'm trying not to obsess, trying to stay positive, but I don't think I'm doing a very good job.
Wednesday, November 9, 2005
We're waiting to hear when the appointment is for an even more in-depth ultrasound, 3d I guess, so they can see how bad it is, to see if this baby has any more chance of survival than she did. I'll be delivering in CMC rather than URMC now, because of the NICU and the pediatric cardiac specialists there.
I hadn't had any intention of having them tell me the gender, but with all of this, I figured knowing would be a good thing. It's a boy. Donovan Zane LeClair, presently 5lbs 5oz. They also say the due date seems it might be a little later than they thought before, more like 12/23 than the 15th. He'll definitely have to have open heart surgery, and if he makes it, will be facing a life full of further surgeries as he grows.
I don't know how much I'll be around for a while, maybe more, maybe less, maybe not at all, I don't know. I just don't know if I can do this again.
Tuesday, November 8, 2005
I hope that my local readers will also post about this story and link to her page in hopes of getting this young girl home to her mother as soon as possible.
She's been found and she's back home safe and sound now.
Monday, November 7, 2005
Thank you again, for all the support, positive thoughts, and prayers on Randy's behalf. We appreciate every one of them, and ask that you continue to keep him in your thoughts. Several people have offered to donate to the registry in hopes that they'd be a match - if being a bone marrow donor is something you're interested in, please visit the National Registry Website.
Should you feel moved to donate in a more material manner, I'm leaving the donation button up until he's recovered. If you can't use (or don't trust) Paypal, feel free to send checks, money orders, or even get-well cards with positive wishes to Randy LeClair, to my address (he'll hunt me down and kill me himself if I post HIS address!) at 2509 Old Charlotte Hwy, Monroe NC, 28110.
Sunday, November 6, 2005
Laurie is serving up a steamy new soup recipe every Sunday on what she calls Souper Sunday at ...slowly she turned. She's a Slow Food proponent, using all natural ingredients, garden fresh vegetables, meats that have been fed something other than hormones and synthetic glop(sorry, I can't remember the proper word at the moment.) And though I have yet to try any of her recipes, they always look delicious, and sound amazingly simple.
This week's Tavern special was Chicken Rainbow Chili, but she also offers up Minced Clam Bisque (plus Shrimp) if you prefer!
Sort of like Cheerwine, only it's good even when it's warm!
I got to thinking the other day about Blog Carnivals, and what it all boils down to is advertising- taking the opportunity to sell a group of people on your 'product.' So this week's Tarheel Tavern is a festival of slogans, and just you wait and see what your motto is!
Fair warning: as with all advertising, the slogan may have little or nothing to do with the product in question.
it's easy for you to roll your own!"
Produce to the limit! This is YOUR war!"
The Other Four Letter Word"
"M'm! M'm! Good!"
The art of time."
Dedicated to Discovery
Something Special in the Air"
but you've NEVER seen him like this!"
"It's Better Here"
Free2Be cancer free"
Let it be a draining of pus
from infected palms, wounded
by the blunt edges of your own
spoiled and sod-soiled nails.
Let it be passion, tempered by wit,
cooled in the afterglow of October Elms.
Remind it of silence, sound and
the harmony found in unspoken lyrics.
Chastise its quietude,
reprimand its resonance
then lay it lovingly
in the arms of the morning glory.
At first, it will wilt with its caretakers
in the brash light of noon. Bind it up.
Whip it like a child, stern, but with grace,
borrowed from a willow switch,
and soon magic will sing, sublime,
with the night-jasmine breath it sighs.
Saturday, November 5, 2005
I haven't been to New York in a few years now. It just gets too expensive to fly and too difficult to drive with all these kids - so I've never even met Randy's wife, but we've talked on the phone and she's such a sweetheart. Scott met her for the first time earlier this year when he went up for his Dad's funeral, and really liked her a lot. Now, I mean, she's being so wonderful with Randy, so supportive and positive and doing everything for him that he needs. And she's handling it so well, I'm amazed. She won't let him give up, and when he found out that none of the other siblings matched on Wednesday, he took it really hard. But she just wouldn't let him give up. She's exactly what Randy needs.
You know, they dated as teenagers for a while and "re-met" a few years ago. She said she drug out the letters and poems (yes, she writes poetry too!) that she wrote back then and read them to him recently. Isn't that absolutely the sweetest thing ever? I think she just might be the biggest reason he makes it through this. I don't know how she does it. She was telling me about all the insurance beaurocracy and red tape, and the deductible and the percentages and the way the insurance company won't pay for the experimental drug that offers him the most hope right now. $400 a month just for that one drug, and the insurance doesn't pay for it. If Scott isn't a match he'll need time to find a match from the bone marrow bank - this drug can buy him as much as 4 months. Without it, he may very well not make it long enough to find a match at all.
Well, I'm going to go scrounging. I don't know what I have around here that anyone might want, but I'll find something, hopefully a lot of something, and it's going on ebay. All donations that I get from here out are going to them, and every other penny I can possibly spare from here to eternity too.
Friday, November 4, 2005
"It was a dark and stormy night, but we'd heard that line before."
Now, for the record here Billy, in giving me that line, you've also given me too much credit, trusted me far too much, but I promise I've done my best not to besmirch the newly born rosey cheeks of the Poetisphere blog! So here we go:
Dark and Stormy
It was a dark and stormy night,
but we'd heard that line before
so I spoke instead of lilacs
or lilies cradling May at dawn.
And I told her of morning glories
in a garden where death
is an intentional catachresis,
as much a malapropism as
the language of nature,
when it constructs April sentences
for a November stroll -
as undeniably wrong as an ivory casket,
twenty four square inches of snow
unforgettable against the umber August earth.
To that, we prefer a dark and stormy night.
Now I'm passing along this torch to Trebuchet at legwarmers, and the opening line I offer up is:
"The clock runs in the shadowsTags:
as well as in the light"
Inspired by The Practice of Poetry.
I've volunteered to host the Tarheel Tavern again this weekend,
I wrote an article of sorts on what it's like to host a carnival and posted it on the THT blog for folks considering becoming a host.
I've got a poem (ars poetica) to write for the Poetry Carnival, due out on the 13th at legwarmers,
and I've got a challenge poem to write that Billy tagged me with for a 'meme' of sorts on Poetisphere.
I also wrote the monthly newsletter for Moontown Cafe.
Mailed it out and posted it on the MTC archive blog.
I need to make a post or 2 on the Poetic Acceptance for grieving parents blog too.
I was so pre-occupied that I forgot to tell ya's, I made my first sale for Poetic Acceptance for grieving parents. Only 2 car magnets, but hey, maybe it's the start of big things! 59 more sales like that, and I'll be able to pay for someone's child's funeral! Here's to hoping I make more sales on the bigger items eh?
Thursday, November 3, 2005
They're going to go ahead and start looking in the bone marrow banks for a match, in case Scott doesn't match. I asked about the cord blood, they say that if Scott isn't a match, his child definitely won't be, so I guess that puts an end to that idea.
Triangle Bloggers Bash
A social event for Triangle-area bloggers to meet and greet each other at Durham's American Tobacco Historic District.
Bloggers, podcasters and anyone who wants to socialize with us.
A reception at the new WUNC studios and a happy hour with free drinks.
American Tobacco Historic District, Durham (across from the Durham Bulls Athletic Park)
Start at new WUNC studios for tour, talk about podcasting and reception with catered food. Short welcome messages from Joan Siefert Rose and Keith Westin of WUNC, Michael Goodmon of ATHD, Stephen Fraser of Lulu. Then move next door to Tyler's Speakeasy for drinks and socializing. Short welcome messages from John Conway of WRAL.com and Henry Copeland of blogads.
Tuesday, November 15, 2005 7-9 p.m.
Why not? (See the note below.)
Sponsors and supporters include:
Wednesday, November 2, 2005
Everyone has said, from a completely non-medical point of view, that Scott and Randy would be a perfect match because they're so much alike, both physically and mentally/emotionally - they're like 2 peas in a pod. Let's hope they really are, even on a genetic level. At this point Scott may be the only real chance they have out of the siblings.
Just because I need it, I'm going to tell a funny story that ought to tell you how much alike they are.
The first time I met Randy, we had gone to New York for one holiday or another, who remembers, maybe it was a just 'cuz trip, but it was the first time I met Randy, the second time I'd met their mother, and we were staying with her. Since we live 850 miles away, visits with Scott were like holidays in and of themselves for the family, and everyone would pile into her house and hang out and Connie would make breakfast and it would just be a hectic chaotic everyone-everywhere-trying-not-to-trample-any-kids sort of time.
This time, Randy showed up early, as in, we were barely awake, no one had made coffee yet sort of early, and I was still a little disoriented, feeling out of place, and I'll even admit to being clingy. I barely let Scott out of my sight. So, at one point, I toddle off to the little girl's room, and come back out, and there, at the microwave with his back to me is a man I believe to be Scott. Silly cutesy clingy me decides to walk up behind him and say hi... with, of course, what else, but a discreet lil ass-grab.
Thank you God in that last half a second I looked up and realized that the hair was just a half shade too dark to be Scott's! Now THAT would have been a great way to impress Scott's brother, yes? Ugh! I was so so embarrassed! And that was even with having avoided the disaster! Now I laugh about it, even Scott laughs at me about it. . . but then, oh man was I mortified!
But that is how much alike they look, walk, stand, talk, and carry themselves. They're like twins, only with a few years between them.
Anyway, hopefully we'll know tomorrow about Scott's results and it'll be good news. We've all decided.
I just wanted to let the person who donated that money know how very grateful they were for that check. Things have been very tough for them financially, since Randy was diagnosed and put out of work. They lost a huge chunk of their income, and then piled on medical expenses, traveling expenses, and the bills from a new baby. Plus she's having to miss work too, to be there for him and get him where he needs to be for various appointments.
So, from them, thank you for that, and for all the messages of support, and I want to thank you all too, for allowing me the pleasure of delivering all of the above.
Go to legwarmers [link] for a complete description of this
Carnival's theme, submission instructions, etc.
In brief: This Carnival challenge is to create your own Ars Poetica. Dabble in art for art's sake. What is your personal rulebook for the function, craft, form or purpose of a poem--or are there rules? What motivates you, as a poet? What you seek to accomplish each time you set pen to paper (or fingertip to keyboard, as it may be)? What is a poem? What mustn't it be? All mediums and formats welcome -- after all, you're the poet.
Submissions due by November 12 (next Saturday) at NOON. Please email submissions to liz8murray(at)hotmail(dot)com or submit them via the email button on Legwarmers.
They announce it with the following introduction, which to me, says it all, but go have a look and maybe even participate. All the details are there!
By The Science Creative Quarterly
"Hey hey, it's time to play
Evolution is what we say
My my, we must try
For ID is a silly lie"
Tuesday, November 1, 2005
I grew up always wanting to accomplish everything on my own, prove myself to be as strong and independent and dependable as she was. So I've spent years never asking for help, feeling like I was weak if I ever needed someone for anything. Well, right now I'm going to ask you all for help, and I refuse to even indulge my tendency to be apologetic or ashamed while I do it. Not so hard really, because I'm not asking for myself, I'm asking for my brother in law.
He became a first-time homeowner in March/April, a new Daddy in June, and a cancer patient in July. He went from the captain of the local fire squad and a full time employee of a mattress factory, to a full time Leukemia patient undergoing chemotherapy in a matter of a week. His family is struggling just to keep the bills paid and food on the table - and that's without taking into consideration all the treatments, travel and life-saving medications that his insurance either doesn't pay for at all, or only pays a portion of. Just one of those medications alone, an experimental drug that his insurance won't pay for, costs $400 a month, and may be the one drug that gives him the chance at surviving long enough to get a stem cell transplant (the modern version of the bone marrow transplant) that is the only thing that might guarantee his remission.
So what I'm asking is that you please please take a minute to use the donation button there on the right, and contribute whatever you can to help them out. Help me help them pay for that medication he so desperately needs.
The Well - 55 Word Poem
He still anticipates her homecoming,
four irrational years later.
He's still blinded
by the brilliance of her smile.
It's in his pocket now -
a worn out lucky coin he fingers
as he walks life's shadowed streets.
He'll toss it, make a wish;
he can't take it with him,
But not today.
Tagged: 55 word poem, Literature, Poem, Poetics, Poetry, Writing
The waiting and anticipation is so hard, I can't imagine what Randy and his wife must be feeling right now. Please God let this be one of those times that the Doctors have the results when they said they would, and NOT make them wait any longer. And please please, let someone be a perfect match!
He will wake soon, cold
in sullied city snow,
and though I've never seen it,
that seems forlorn and grey.
His leaves have fallen and
this season has shaken him.
Winter finds him pale and naked
and takes all he has left,
tapped him like a maple, sapped
for the making of syrup.
So I sit this morning,
with coffee and breakfast
contemplating life -
hoping this harvest
renders something sweet.