Sunday, August 23, 2009

Top 5 irrational fears about starting back to college

Classes start today, 11 am. No turning back now, right? Tons and tons of thoughts are flying in and out of my mind this weekend, and every so often is the thought "OMG I AM COMPLETELY CHANGING THE DIRECTION OF MY LIFE; AM I A TOTAL NUTCASE?"

So, with that in mind, here comes the list....in no particular order of irrationality or fear-ishness. (not a word, I know, LOL)

1. I will show up at the first class today with no shoes on. (I'll pause a moment while you collapse on the floor with laughter at my expense) I did not make this up just for your entertainment, I promise. I have this sort of dream before every big/new/stressful life event. I dreamt it in the days before my wedding, before starting College Adventure #1, before my first year of teaching, etc. And the terror associated with this dream is real, no doubt. Imagine it: You arrive for a momentous occasion, first impressions really matter, you're sitting in your desk and all of a sudden OMG I do not have shoes on!!!!!! How did I even get here like this? And even more bizarre.......what does a dream like this symbolize? Any dream interpreters out there?

2. I will be the oldest one in the room(s), professor included. Why in the flipping world that even matters to me is not clear, but it does. I already know that my primary supervising professor is a year younger, and she's got her doctorate in MT already. I got mine in preeclampsia, with a concentration in the autism spectrum and special-needs parenting. No fancy degree certificate on the wall though.....just scotch tape residue, the remains of Mr. L's endless lists that he simply MUST display all over the house.

3. You know that scene in Finding Nemo when the fish are trying to join the "East Australian Current" along with those sea turtles, but it's going SO fast and they just can't get in? Yep, what they said. When I think of all the things that have changed since the pre-internet days of my last time in college, I feel nauseous. Do people even take notes on actual paper any more? Do I need my laptop in class?

4. What the hell do I wear? Yes, this is of great importance. Gotta not look any of the following: too old, too fat, too dorky, too teacher-ish, too much like I'm trying to look young, too out of style, too dressy, too casual.......you get the idea. {sigh} I need a fashion consultant. Any volunteers?

5. There will be too much workload, too much writing/term papers, and I'll end up being MORE busy and more time away from my kids than I had before. I've already had to resign myself to sending them to the after-school care program 4 days per week this semester, based on my class schedule and how late the classes end. Yuck. I was looking forward to picking them up in the cute little carpool loop behind the school. Oh, and nearly $100/week for the afterschool program too........lovely.

Ok, I could go on listing forever, but I limited myself to 5 so that I can manage to not be late for the actual classes on the first day! Gotta go shower, put on the painstakingly chosen clothes, pack the bag with my supplies one more time, and drive headlong into this new phase of my life. Are any of you old enough to remember those old commercials for Nestea.......the Nestea plunge? LMAO at the thought of it, but that's pretty much what I'm doing today. Eyes closed, let go, fall backwards into a swimming pool and trust that it will be ok. I'll come out soaking wet, but hey, it's 90 degrees outside so who cares, right? ;)

Saturday, August 22, 2009

Facebook drama

I love Facebook, truly I do. I've reconnected with so many people from various stages of my life.......high school classmates that I'd forgotten even existed, former students I taught, coworkers, college friends, even former teachers of mine. And therein lies the drama.

I have the absolute highest respect for teachers. They do a mostly thankless job, for little money and even less credit in the eyes of many. I was fortunate to have quite a few incredible teachers in my time, and now that I've walked a few thousand miles in their shoes, I understand even more how wonderful they are! So you can imagine how over-the-moon I was a few weeks ago to have re-discovered my very first band director, thanks to the miracle of Facebook. I was in his classroom more than 25 years ago (gulp!), and I admired and loved him in the sweet way of a 6th grade girl. When we moved during the fall of my 7th grade year, I was devastated and just knew I wouldn't like any new band director I might get. I wanted to stay with Mr. M, it was as simple as that. So after all these years, to find him again on FB........amazing! And he even says he remembers me! :)

Well guess what? Mr. M is raving right-wing lunatic. {sigh} And I do mean raving, ranting, unhinged, conspiracy-theory lunatic. You know, "Obama is the antichrist and is out to get us all" kind of thing, and he's ruined our country in a mere 8 months. Oh, and don't forget that public schools are ALL a freakin' disaster (or "dead", his words) and no one who cares about their child or this country would ever set foot in one. Makes me wonder why he still teaches in one. Things that make you go hmmmm.........

I've UNfriended people on FB for less. Much less. Much MUCH less. I'm pretty much the polar opposite of where he stands in terms of my politics, and I do tend to post politically-oriented links and stuff on my FB page. I happen to proudly send my children to a wonderful public school (shout out to my AIMS peeps!), and am VERY proud to have voted for our President and to support his policies. And because FB is a world of my own design, I have been perfectly content to remove a "friend" or two when I've gotten nauseated one too many times at reading their drivel.

So if this were anyone else posting the "schools are evil and Obama is a disaster" crap, he'd have been long gone. I mean come on, what's one friend when you've got 447, LOL? But the whole teacher-respect thing is so ingrained in me that I can't even call the man by his first name, much less find the nerve to speak up and defend my position when it differs from his, as it does about 99.592760274% of the time. I'm an adult now, damn it, not a 6th grader. Hell, I'm older now than he was when I was in his band. But I can't make myself stand up to him and argue like I really want to, so I end up having to read his crap while biting my tongue until it bleeds. And I just "found" him again, can't stand the thought of the whole UNfriend thing.

So, blogworld friends......what's the answer? I know, I know, there is no good answer. Guess I'm gonna have to put up with it, or grow a backbone and decide to say something back to him one of these fine days when the preposterous rantings push me over the edge. I guess it's that old cliche: You can't go home again, or you can't find a teacher you idolized after 27 years and expect that he hasn't changed, or that you haven't. {sigh X 10000000000....}

Sunday, August 16, 2009

it's almost time

In tonight's late-night ponderings, I'm thinking over the fact that this summer has really big like one big time of preparation.........and that time is almost over.

Preparing for Mr. L to begin 3rd grade, which brings with it so many new things for him (3 teachers instead of 1, singing in the Chorus, being in the gifted program).

Preparing for the Energizer to enter Kindergarten. Hoping and praying that the teacher and classroom will be the right fit for him, that the medicine will last just long enough each day, that somehow we'll manage to avoid the dreaded "he just bit somebody" phone call.

And just as much, I'm preparing to re-enter school myself, 16 years after my first college graduation and with 14 years of teaching under my belt. This kind of preparation is just as much (or more) mental than it is practical. Ok, yeah......I did go buy a pack of highlighters today, and have rediscovered the joys of Sharpie fine point pens. And the $800 box of textbooks in the back of my van certainly cannot be ignored! But mentally, emotionally, I've had to do a bit of adjustment as you can imagine, and it's still ongoing. To be a student again, a learner; to open myself up to so much new information, new ideas and concepts; to be willing and brave enough to try new things at this point in my life (OMG, learning to play the guitar!)

And the other thing I've tried really, really hard to do is to get my home in some kind of respectable shape before the school year craziness starts. I didn't actually realize along the way that this was what I was doing, but now I see it. I've hung new shelving, gotten Mr. L a new chest of drawers, done insanely thorough vacuuming (including attachments!), had a yard sale, taken baby stuff to sell at the consignment store, worked on the flower beds and the kids' sandbox, and just generally tried to organize and declutter. Still have a long way to go, but it's amazingly better than when I started in May. Put it this way: You can actually see some portions of my kitchen counter now. It's dark green by the way; I'd sort of forgotten.

I think it comes down to this: My life is about to explode into its busiest time of the year. K is in marching band hell, so we basically don't see him from August to November 1. That means I'm mom, chauffeur, homework coach, discipline manager, grocery shopper, chef, maid, reader of Corduroy books and backyard beach volleyball star. Oh, and a full time student and music therapist-in-training too, just in case I won't already be busy enough. But, if on top of all of that, I pick up the boys and arrive home in the afternoon to a horribly messy, chaotic house, I will LOSE IT. Some days it might be 4:30 or even 5 pm before we get home, and I refuse to be greeted by a sink overflowing with dishes or floors covered an inch thick in cat hair and grass clippings. So, unconsciously, I've been cleaning, organizing, preparing for this new phase of life. I just had a strange thought.....it's almost like "nesting", isn't it? You know, the thing that I'm told that pregnant women do when they get close to full term and are nearly ready for baby's arrival? Hyper-focused organization, intense preparation, cleaning like a mad woman? Yep, that about covers it.

But you know what? That nesting time is almost over. Tomorrow, I take the boys to Meet the Teacher day, and on Tuesday they start school. I start the following Monday, August 24, which also happens to be my birthday. What a present, huh? Welcome to 38, here's your student ID card! :)

Friday, August 14, 2009

This Lovely Life

I literally devoured this book......."This Lovely Life" by Vicki Forman.

Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.

***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)

This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.

Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.

And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(

Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.

As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.

When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.

After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.

Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."

Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(

Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:

"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?

Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."


Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.

**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.

Sunday, August 9, 2009

miracle baby, year 8

Not quite a wordless Wednesday here, but today's post is going to consist mostly of pictures........a trip through time, the evolution of my oldest son. His growth into quite a smart, handsome and talented young man, despite his preemie challenges and the autism-spectrum struggles he still faces.

Happy Birthday Mr. Literal! I could never have imagined, on August 10, 2001, the amazing, scary and uncharted roads we'd travel with you. I sat at your bedside in the hospital on 9/11, have driven the wheels off of my van in taking you to therapy appointments and doctor's visits, and proudly watched you graduate from preschool and go on to be selected for the Chorus and the gifted program at your school. Being your mother has made ME so much of a better person than I ever was before, and I'm constantly learning from the many things you have to teach me. I love you more than I can put into words, and I am so incredibly proud to be your mother.

Andrew close up in NICU

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Andrew\'s a graduate

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Tuesday, August 4, 2009

autism angels

Have you heard that term before? Not sure where I ran across it first-- probably in an online forum--but I can't get the phrase out of my head today. The best way I can describe an "autism angel" is that it's someone who makes a positive difference in the life of a child on the autism spectrum. Even more so, it's someone who isn't looking for accolades or glory, just doing their job, doing what they consider ordinary, but it's oh-so-EXTRAordinary to us, the families of those ASD kids.

When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!

Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)

That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!

I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.

But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.

During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......

Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.

Thursday, July 30, 2009

Ok, NOW I've got something

....and it's about health care. Those 2 words are ALL over the news, the internet, and every other conceivable place these days, as President Obama and the Congress struggle over "reform" of the US health care system. So in my typical nerd fashion, I've been thinking over this topic, and there are lot of things I don't understand. I'm gonna throw some of them out here, and if you have any health care background or actual knowledge of the topic (as opposed to my ramblings, LOL), please chime in and educate me. :)

****Disclaimer****

I am a teacher by trade, and a mom. Not a nurse, doctor, insurance agent, accountant, or anything else that might give me actual understanding of the following topic. The ideas to be stated here are mine and not the intellectual property of anyone who understands how the system truly works!


Since becoming an adult, I've had exactly ONE kind of health insurance--the kind offered to employees of my state. As a teacher, it was just a given that I'd enroll in this insurance when hired, and I've kept it ever since. When I stopped being a state employee (at Mr. L's birth), K just took us onto his state-employee policy, and now he covers all 4 of us. So I'll freely admit to not being an expert on the various types of policies, coverage, or options.

Our insurance is pretty good, I suppose, as these things go. Even with the catastrophic health situations that have occurred for us in the last 8 years, we've not had to declare bankruptcy or sell any vital organs to pay anything that insurance didn't cover, etc. And because the boys were born in a state hospital, and this is the state insurance..........they scratch each other's backs, I suppose, and charge lower rates to each other than they would ordinarily. Energizer is the one in our family for whom the insurance has paid the most over the course of his life.....his total is about $175,000 right now, lifetime. And that covers a traumatic birth at 27 weeks, and 11 weeks of hospitalization. Mr. L's is about $100,000, mine's about $40,000. K hasn't used it nearly as much, since he's exempt from the whole pregnancy/childbirth/life-threatening illness thing.

But as I strain my brain to try and understand the ongoing debate over reforming the system, I've concluded that I must not really grasp the way things work, and why they work that way. We pay thousands of dollars per year in premiums for this insurance, whether we use the coverage or not. If we went into a typical doctor's office, clinic, etc, the first question we'd be asked is "do you have insurance?" If we said no, we'd likely be denied care. We could go to a free clinic (some areas have them), or the hospital emergency room, and we'd be treated no matter what, right? Am I pretty close so far?

Further, I believe it's true that insurance companies do not pay the doctors/hospitals the same cost for treatment that is actually billed, or what I would pay if I did it on my own. Say I needed to have a suspicious "spot" removed at the dermatologist, as I did back in the spring. I have the procedure done, the doctor bills me AND the insurance company. They'll state that the procedure cost $189 dollars, let's say, but that the "estimated insurance contribution" is $77. And I owe the rest. Or is it just 20% of the rest? Or is there a copay, then 20%? So somewhere along the line, someone's determined that what I had done is worth $189 and they charge that, but someone ELSE (likely with no medical degree) decides it's really only worth $77, and that's all they'll pay. But if I have already paid my "out of pocket maximum" for the year, then the insurance will STILL only pay $77........and the dermatologist just takes that and considers the account paid. Less than half of what was charged, but that's ok somehow. But if, by some strange chance, I did not have insurance YET was actually treated by this doctor, you can bet your sweet %&*#$ that I'd be paying the full $189, or becoming intimately acquainted with collection agencies.

How did we get to this point? It wasn't always like this, you know. Think back to old TV shows or movies you've watched about the Wild West or Little House on the Prairie. Back then, if you were sick or hurt, you got the doctor to come and he did what he could for you, which probably wasn't much that actually helped. You may not have had money to pay the doctor, but there was no such thing as insurance. So what would you do? You might give the doctor a chicken, or a bushel of apples, something you knitted or something you baked. How the hell did the system evolve from that to this?

The only thing I can come up with is this: As technology has evolved, and medical knowledge has improved, costs increased. In Laura Ingalls' day, it didn't matter if you couldn't afford intricate surgeries or expensive therapies because those things didn't even exist! So as costs increased, somebody thought up the idea of issuing "health insurance" to help cover the costs. People already had fire insurance, even back to the 1700s, so the idea was already out there. A few people got this new-fangled insurance, most didn't. Then more chose to get it, then more, and costs continued to go up. And as doctors raised their prices, charging more for the same service (whether warranted or not), the suits at the insurance companies did NOT raise the amount they'd pay for that same service. But the doctors took it anyway, figuring they'd still make out ok with that lesser amount AND that the people who weren't insured would be paying the higher rate anyway.

The premiums for insurance kept going up as well, even though the amounts they'd pay for your care stayed flat. Premiums reached a point that many people couldn't even fully pay for them, so employers began to "subsidize" the coverage for their workers. Then that got to be too expensive for the companies, especially small ones, so some began to drop their workers' coverage or require workers to pay 100% of premiums. Yet somehow it's reached a point that everyone is expected to....nay, required to have insurance. How did this happen? Costs just keep going up and up and up, so doctors figure that NO ONE could pay the full amount on their own...therefore, insurance is a must if they ever plan to get paid.

Here are some radical thoughts I've had: (bear with me, they might seem insane)

How much more money to spend on my family's health care would I have if we didn't pay for insurance premiums every month? Couldn't I use that $4,000-$5,000 per year to pay for routine care, and even a good bit of care beyond just checkups? Could the whole insurance thing just be scrapped altogether, or at least made much more optional than it now appears to be?

If doctors are ok with accepting insurance payments that are FAR below the billed amount that they charge for a service, couldn't they just charge that lesser amount to start with? If they can cover their costs with the $77 for my dermatology visit, why are they charging nearly 3 times that? When people complain so much about the "high cost of health care" and the fact that many do not seek the care they need because of cost, it has to make you wonder WHY the costs are so high? If the $77 rate is good enough for Blue Cross to pay, it should be good enough for me to pay too.

Well, I haven't created world peace or solved the pressing problems of our time. All that I've done is show how little I know about the topic of our health care system and its need for reform. But it does need reform, that's clear. Preventative and routine care is important, and everyone should be able to receive that, the way I see it. Even without insurance. If costs were more reasonable, it would put this kind of care within reach of a lot more people. I just wish, though, that the people "in the know" who are actually going to create, debate, and vote on any reform plans would come to this daunting task with an open mind, open heart, and caring spirit. A life is not worth less or less in need of saving just because that person is poor.....now, what can we do to make sure appropriate care is available to all, not just some?

And the Rush Limbaugh/Glenn Beck/Bill O'Reillys of the world......SHUT UP! Quit spreading your crap about things that the health care proposals in Washington do NOT include! The bill does not require elderly people to make a plan with a government nurse about when and how they want to die. Please. :( Nor does it plan to "ration" care for anyone, or pay for care for illegal immigrants, or for abortions. So just stop the scare tactics, and try to actually use your brain and THINK about the topic at hand rather than spouting off ridiculous claims that just polarize the country even further.

So how was that? Too much of a heavy-duty topic for a Friday night? ;)

Wednesday, July 29, 2009

I've got nothing

Nothing witty, nothing funny, nothing exciting or profound to share. Been hoping I'd come up with something, and have been postponing doing a new blog entry so that I could wait until inspiration hit, but it hasn't. ;) I guess I'll just ramble, ponder and write in a stream-of-consciousness style. It's midnight as I write this, so it should be really interesting, LOL!

Summer's at an end around here--and no, I don't mean summer as measured by the heat index. That's still roaring along in the 90s every day. What I mean is that the most dreaded 2 words of the entire school year for band directors have arrived..........BAND CAMP. I think the whole experience should qualify under "cruel and unusual punishment", and I've been involved in it for plenty of years, so you know I can say that. K is there every day now, 8 am-5:30 pm. Next week, 8-8. I'm going over in the afternoons to run a sectional and remind myself that I was once a trumpet player and once a teacher as well. We're having to ship the kids off to a babysitter for 2 hours every day, but it looks as if they're having fun and at least it gives them a change of scenery and me a little Mom break too.

Found out a few days ago that one of Mr. L's teachers for this year has changed grade levels, so he's getting someone new to the school. I hate the unknown (as it relates to Mr. L) and am really really REALLY hoping this new teacher is a good one. He'll actually have 3 teachers this year, which means 3 for me to keep up with, 3 to educate in the ways of Asperger's and Mr. L in particular, 3 personalities, 3 styles of teaching, etc. {sigh} Seems like all I'm hearing these days is "3rd grade is SUCH a step up from 2nd, so different, so much harder". Great, I can't wait. Academically, I know without a doubt that he can handle it. Emotionally/socially/organizationally? Ehhh.....not so much, I'm afraid. In a lot of ways, he's still so immature, NONworldly, etc. And that's good to some extent, I guess, but if we want him to have any hope socially we've got to start promoting age-appropriate language and actions. WTF am I talking about? Well how about this........most 8 year olds aren't going to call it a "boo boo" when you scrape your knee, cut your finger, etc.

I just ordered what looks to be a great new book from Amazon the other day, The Hidden Curriculum. Can't wait to read it, memorize it, plaster its rules to my forehead or tattoo them on my arms or something. I posted a week ago on Hopeful Parents and went on and on about needing to create lists for Mr. L so that he can know what is and is NOT ok to say to various kinds of people. Someone suggested this book in her comment to my post, and I'm very grateful. Looks like it was actually written just for us! :) I'll review the book once I've devoured it. Give me a day or so, ok? :)

Tuesday, July 21, 2009

Tuesday Tidbits

I'm just full of these cute names for my blog posts, huh? ;)

~ Well, it's the last full week of life as we know it, LOL.......meaning, the last week before K starts the dreaded BAND CAMP and we essentially don't see him for the next 3 months. Every year that goes by makes me hate marching season more and more. When I get done with my own schooling, and am actually earning a salary again for a change, I swear we will make it happen for K to get out of doing marching stuff ever again. He can "refuse" that part of his contract; it means less money, fewer contracted days, but it will be well worth it. No more Friday nights wasted at meaningless football games, no more 6 am-11 pm Saturday contest trips, no more 3 or 4 nights a week at practice and getting home just at bedtime. :(

~ Hoping to have a yard sale this weekend, something we've needed to do for about 5 years, LOL. There are things that we've had in our garage, unpacked/unused, ever since moving to this house. There are furniture items we don't use anymore, baby stuff and clothes, and countless other things that make our garage look like a tornado hit it! Pray for no rain!

~ so fortunate that this area has so many water parks, because the kids love them and are really becoming good swimmers, especially Mr. L. We went to Splash Zone today and had a ball! Mr. L is swimming underwater like a champ; I'm so proud of him! A little daredevil-ish too....he took K with him on the BIG water slide over and over and over, while Energizer and I hung out in the regular pool area.

And tonight, at bedtime, he gave me one of those rare peeks into what he's thinking, how his mind works, etc. He was telling me that something had happened at the start of one of their slides down today.....it's a two-person "tube", and he was in front. Thought K was seated and ready too, but he wasn't. So Mr. L pushed off and started to slide, and says K had to really jump to get in before the float was gone! Then, a few minutes later, he was almost in tears, saying "I just can't stop thinking about Dad and how far he had to jump to get on the slide with me, and how much he could have gotten hurt if he had missed getting on". He really did start to cry, then insisted he had to get up and go to the bathroom to "wipe away my tears". He has got to be the most sensitive kid, with the biggest heart, of anyone I've ever seen. :) :)

~ Energizer fell asleep in my arms as we sat in the recliner tonight. I reminded him, as his eyes drooped, of how he used to do that every night when he was a baby. I'd give him a bottle, rock him, and then take him to his room after he was asleep (and after I'd gotten my fix of snuggle time with him). No, not the textbook bedtime routine, and probably frowned on by most people, but I wouldn't trade those times for the world. He was soooo wiped out by today's "water park adventures" (his words), so he just snuggled up in my lap with a throw blanket and some stuffed animals and let me rock him. The last thing he said was "I love you", followed by a sweet, sloppy kiss. I asked him earlier today if he'd always let me snuggle with him, even when he got older and bigger.....he said, "yes, sometimes I will". Please Lord, let there be some of those times! I can't bear the thought of not having those special moments. :)

Wednesday, July 15, 2009

"if I could turn back time...."

....is a line from a cheesy old Cher song, one which you'll now have stuck in your head for the next day or so. You're welcome. ;)

But if I could somehow do what Cher speaks of, I'd go back to the Fall of 2003, and speak to my "newly pregnant for the second time" self. And if I could resist the urge to wring my own neck out of frustration, I'd want to talk to myself in some very forceful language. VERY forceful. What would I say? Something like:

"Don't fall for that stuff! You know, the only-in-a-first-pregnancy crap! Do your research, don't be complacent. Get second opinions, third opinions, 7,964th opinions. Assume the worst, and prepare for it. Drive your butt down to the medical university on the day you get the positive pregnancy test.....and tell them you're not leaving until they hook you up with a peri or maternal/fetal medicine doc."

Or, better yet, go back in time even further, maybe 2002 or so, and say:

"Get the underlying disorders tests run! You don't know what the hell that means? Look it up, talk to people, learn everything you can. There ARE things that can be done for some women to keep it from happening again, so don't let them tell you otherwise. Be strong, insist on knowing and doing everything humanly possible to make the next pregnancy healthy."

So why am I obsessing about this now? Well, truth be told, it's not just now. It's pretty much been a constant (albeit in the background sometimes) ever since my pregnancy with Energizer. More specifically, since his birth, and since I became a part of the online community of preeclampsia survivors. I've learned so much about the disease itself from my dear cyber-friends, and learned so much about what I could have done, should have done if I'd only known.....and things might have been so very different.

I'm so angry at myself when I look back. I remember telling people early on in the pregnancy "oh, well it usually only happens in first pregnancies, and they're gonna watch me closely" etc. {{{sigh}}} Lot of freakin good that did, huh? I was so blissfully ignorant, so naive, so willing to just accept whatever I was told, and I can't believe I was so stupid. :(

I'm not going to try again, I'm really not. Really. I mean it. Cross my heart and hope to die.....ooops, bad choice of words, considering that another pregnancy might actually cause that phrase to become all-too-true. But among the PE survivor friends I have, I'm one of the "old ladies", and there are still plenty of them who are young enough to try again AND equipped with the knowledge and resources that I didn't have in either of my pregnancies. So there's a mini-baby-boom going on right now in my online community, which is wonderful and exciting, of course. But....

****embarrassing, selfish and ridiculous content follows*******

I can't help feeling inadequate, like a failure all over again, whenever one of those ladies makes it through a full-term healthy pregnancy after PE. Some of them have no trouble at all and the pregnancy is basically smooth and easy. Others, knowing what they do now about their health condition, etc, work very hard to enable a long, healthy pregnancy. They take supplements, injections, spend long weeks on bedrest, etc, and they manage to reach that elusive goal that I never did--full term delivery, no NICU, healthy baby and Mom.

Pathetic, huh? No one has ever accused me of doing anything wrong in my pregnancies, nor would they. The good health and success of my friends' pregnancies does not somehow reflect badly on me or make anyone think less of me. I'm just doing it to myself, it's my problem, I know that. Truth is, the emotional wound of my experiences is still very raw, and seeing my friends "beat PE" brings out the hurt in me again even while I celebrate their healthy babies. There's a thin layer of healing skin over the wound, so that when you look at it from the outside you might not even know what lies underneath.

What's underneath is a hole, deep in the emotional storehouse of experiences that bind women together as mothers. When a woman is pregnant, talk among the other women naturally turns to their labor/delivery stories. Nope, I got nothing. Women proudly photograph their blossoming bellies and share with everyone they know that visible, tangible evidence of the new life growing inside them. The pics get attached to emails, posted on websites, plastered all over Facebook, and framed on the wall for posterity. But you've got to have a big belly in order to photograph it.....so again, I got nothing.

And nothing I can do now, or could ever do, will change any of that, or fill the gaping hole with those missing memories and experiences that I never enjoyed. People that I dearly love and have known for years in cyberspace may someday be blessed with the chance to have those experiences, and I wish them only the best. Bravo to them for being their own best advocates, doing the research, getting the tests done and conquering the horrible scourge of preeclampsia. But allow me the indulgence of wishing, wondering, "if I could turn back time".....

Monday, July 13, 2009

bumming, not sure why

It's not Friday, but I feel like I need another Friday Fragments post........just random tidbits of crap that are going on in my life that I want to write about. Nothing profound and life-changing today, I'm afraid. (as if it ever is, LOL!) Maybe we could call it "Monday Morsels". ;)

**The last two nights I have had dreams that I decided to return to my previous (and truly soul-crushing) job, rather than go back to college for Music Therapy as I'm actually doing. WTF? I don't usually put much stock into the interpretation of dreams, but I can't figure out for the life of me why I'm dreaming this stuff.

**Had a party at the house on Saturday night, and am still mildly pissed off about the sparse attendance. Mostly upset at the local friends who never really responded to the invitation other than a "not sure, we'll let you know" etc. I'm sorry.......I thought we were all adults here, and understood what manners were. Don't give me the "I'm so busy, the kids, etc" excuse. I've got 2 kids too, and I'll bet you the minimum salary for a major league baseball player ($400 K in case you wondered) that raising MY little guys is just a tad tougher than the healthy, brilliant and oh-so-NT kids you were blessed with. But I am also sure that when you invite us to something, we're there. Grrrrr......

**Took Mr. L to social skills group today, and it occurred in the therapy practice's brand-new clinic space, which is INCREDIBLE! So nice and roomy, colorful, modern, welcoming, etc and the therapists seemed really proud to show it to us. :) This is a nice thing, considering we'll be visiting this clinic 2x weekly until the end of time, unless something drastic changes.

**Feeling frustrated about weight again. Haven't actually weighed myself even since we got back from the Disney trip, but I know I've been "emotional eating" more than I'd like and I can feel the pounds coming back on. Those 6-7 lbs. I fought so hard to lose over the last couple of months of school? They're baaaackkkkk. Or at least I think they are. {{sigh}} I did try running yesterday though, and kind of liked it (is that weird?). No one else in my family either wants to do it or even can do it (K has knee issues), and I don't relish the thought of saying "bye, see you guys later, going for a run". All 3 of them will be playing a game, watching something on TV, etc and I'll be out there sweating......not sure that's going to happen very often. Maybe after school starts. But see, that's my problem. With me, there's always an excuse, always a reason to procrastinate. :(

So anyway, I've gotta get out of this funk. I know it's a funk because just thinking about tomorrow and what we might do makes me tired (keep in mind, all 4 of us are on summer vacation for a couple more weeks, setting our own schedules or LACK of any schedule, etc). I end up thinking "oh, I don't feel like doing that, maybe we could just stay home" even if doing that means going to the movies or shopping. And I'm snapping at the kids way more than I should, more than I typically do, but then I hate myself for the way I sound. :(

Guess this should have been called "Melancholy Monday Morsels"............

Friday, July 10, 2009

Friday Fragments

Ok, I'm trying something new......thanks to Jen for the idea of Friday Fragments!

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Friday Fragments, the Water Park Edition

~ Took the family to a local water park today, and they loved it. I did too. What I hate is how it seems as if NO ONE monitors their kids in public places anymore, except me and K, that is. :(

~ On our way to the water park, we drove by the kiddos' school to look at teacher assignments posted on the door today. WOO HOO, Energizer got the teacher I asked for, the teacher he absolutely MUST have for success in Kindergarten. *sigh of relief* Mr. L will have 3 third grade teachers (all kids rotate between them), so it really doesn't matter who he is assigned to for "homeroom".

~ A sweet but heartbreaking scene I observed at the water park: A dad, gray hair, probably late 40s or older, with his son, approximately age 11. Holding hands, walking all around the spraying fountains together, etc. Something made me look closer, and I noticed the son putting his other hand over his ear and cringing as they walked under a waterfall. I watched for a few more seconds, and saw that the boy's swim trunks were loose and drooping a bit, exposing a pair of what we called "swimmies" underneath......you know, the colorful swim diaper things that babies and toddlers often wear in the pool. So, I made my educated guess/assumption that this is a child on the autism spectrum. Could be wrong, I suppose, but I'm pretty sure. Anyway, I kept sneaking glances at them, watching how carefully the dad walked the child through all kinds of water "obstacles" .....under, over, through, etc. Water wasn't deep, maybe a foot at the most, and Dad and son explored it all. Watching them just really touched me, how good the Dad seemed to be with him, etc, and then there's always that "but for the grace of God" thought too if you know what I mean........

~ A week ago, I had a moment of temporary insanity and invited some friends over for a party to be held at my house on Saturday night, July 11. WTF was I thinking? Yes I know, these families have almost all had gatherings at their homes (which we've attended), and now we ought to return the favor and have something here, but OMG the amount of cleaning and crap I've had to do in this house to get ready. And there's still tons more, and only 20 hours to go until they get here! K keeps telling me it doesn't matter, they all know we have kids and our house won't look 100% perfect, but I just can't stand the thought of having people in here unless we're at least on 97% (*or better, of course).

~ Speaking of the party, got any good margarita recipes? I decided to make an interesting flavor or two, beyond just the standard kind, and am still looking for ideas. Comment away if you've got anything!

Sunday, July 5, 2009

doubting, again

Crappy day with little Energizer today. *sigh* I'm just exhausted from all that we've dealt with from him today, and when days like this come, I start doubting again.....worrying about the future, doubting our decision about medication, wondering how in the hell he's going to make it in "real school" this fall, much less in "real life" for the next 75 years or so. *even bigger sigh*

We started trying meds early last fall, September or October, I think. The first one we tried, Tenex, did nothing for him but make him very VERY sleepy. He was in a gymnastics class and falling asleep while listening to instructions from the teacher. :( Oh, but the impulsiveness, aggression, violence, "wildness"? Still there just as much, or even more it seemed. In November, after he was unceremoniously kicked out of our preschool, I called the ped in desperation and she started us on Focalin. He's tried the 2.5 mg short-acting tablets, and the 5 mg XR capsules.

The thing is, Focalin REALLY works for him. Makes him a tiny bit sleepy at times, but other than that, all we get is good stuff......listening, sitting still when asked to, sweet disposition, no aggression, basically an angel. So what we've got in our house is a Jekyll and Hyde now---without Focalin, holy terror; with Focalin, a joy to have around.

Today, we were half unpacked from our quick trip to visit family for the 4th, and I couldn't find the XR capsules when I needed to give him one this morning. We usually do XR in the morning, and then follow up with a short-acting tablet around 3 or 4 pm if needed to get us through the evening. But we were in a hurry for church, and I'm dashing around looking for the flipping pill bottle......not a pretty picture. Eventually, I gave him one of the tablets instead, figuring that was better than nothing, and it was, for a while.

We'd planned a grocery store outing for the afternoon, and as the hour approached we saw the 2.5 mg wearing off. How could we tell? The maniacal laughter, the near-constant running, seeming inability to stop and/or listen, and the number of times I have to resort to "ONE.........TWO....." etc. I mixed up another 2.5 mg tablet into lemonade (our preferred method of consumption) and he drank it as we walked to the car and got loaded up. The store is only 1/2 mile away, and clearly the med did NOT kick in as quickly as I hoped it would. Can you say "shopping trip from hell?" Good job, boys and girls, I knew you could!

Standing up constantly in the stupid freaking "car" contraption that he insists on riding in, grabbing anything he can touch on the store shelves, nonstop chatter about wanting a cookie, wanting ice cream, etc. Eventually, getting out of said "car" but insisting on pushing the car instead.......pushing it WAY too fast, pushing it into the back of people's legs and feet, and just generally acting like a monster who apparently was never granted the gift of hearing. Or of parents, I guess, which is probably what the other shoppers thought.

So, in one of my finer parenting moments, I made an ass of myself in front of the store staff by jerking his hands off of the cart handle just milliseconds before it would have crashed into our bagboy's feet. I jerked him away from the handle, picked him up and carried him, baby style, out into the store lobby while K paid for the food. And we had a "word of prayer" in my (hopefully) softest yet scariest Mom voice about how he'd better NEVER do this again, when we say stop pushing the cart then he'd better stop, etc. Still, no med effectiveness yet, I could tell by the laughing, the thrashing to get out of my arms, etc. And boy, was I regretting that we hadn't put a bottle of wine or some Smirnoff Ice in the cart.......

But you know what? By the time I strapped him into the carseat to drive home, it was kicking in. He was very repentant, almost in tears, and I could see the "angel child" emerging again. At home, things were by no means perfect, but we've certainly been through worse. In the occasional moments of calm tonight, I started thinking though (back to where I started this rambling post).........Is this the way it will always be? People ask me "will he have to take these meds all of his life?" and I don't know what to say. If today is any indication, yes he will.

But what are we actually teaching him? He doesn't know (yet) that he even takes meds, because I didn't want him to use that as an excuse, or expect that the meds have to do the hard work but not him. Does that even make sense? Am I just deluded and/or stupid? It just feels like we're putting a band-aid (or 2) every day on a wound that never heals, never improves. And God forbid if we run out of band-aids, or miss a day........it's a nightmare. But we just keep on sticking the band-aids over the spot, hoping no one will notice and that people won't realize that my child has a festering open wound on his body and wonder why I'm not actually DOING something to make it better.

This has made no sense, and I'm sorry for that, but still appreciate you letting me say it. I'm just worrying, I guess, thinking that we're masking the problem but not improving it, solving it.......only, can it be solved at all? Does age, maturity help? Are there strategies we don't know about? I don't want my child to be 100% dependent on medication to even function in his life, in his world. Is that what he has to look forward to? Right now, my sanity and survival depends on those meds, I'll tell you that much. Will that ever change? Am I taking the easy and/or selfish way out?

Tuesday, June 30, 2009

how far he's come

I know, I know......I still owe you parts 2, 3, maybe even 4, of the Orlando saga with pics. I'm still uploading them slowly, and onto various computers, so it's coming, I promise. It'll just be a bit more of a wait as life interferes with my blogging time!

Today's post, however, is about Mr. L and an amazing occurrence that happened at about 2 am this morning. He had fallen asleep next to his dad in the bed, as they watched sports together, and had neglected to go to the bathroom right at bedtime.....so you know what that means. He's nearly 8, he doesn't have nighttime accidents, but he did last night thanks to that big cup of lemonade he drank before bed. I'd been online, but was ready for bed myself and went in to check on him and see if there was room for me to actually sleep in my own bed. What I found was Mr. L sound asleep in a pair of soaking wet underwear, on a soaking wet mattress.

I called his name a couple of times, and he stirred and said "yes?" I explained that he was wet, I've got some new underwear to put on, so he needed to get up and let me help him. Calmly and quietly, he did that. He was probably about 25% awake, but followed me as I led him to the couch and set him up with pillow and blanket, etc to sleep there. Instantly it seemed, he was asleep again and that was that.

This morning, I started thinking about how absolutely freaking amazing this incident was, compared to the way things used to be for Mr. L and for us. When he was a year old, and until age 3 or even 4, he was the world's worst sleeper and night times were torturous for us. He would wake up multiple times almost every night, and since he insisted on sleeping with us, you can see the problem. Heaven forbid you should actually touch him, or try to move him/talk to him/breathe in his general direction. OMG the blood-curdling screams that would come out of that little body!

Looking back, we think it was autism-based, since this coincided basically with the time in which he was so delayed in language. But those oh-so-lovely parenting books like "What to expect the first year" (you know, the book I bought and hardly even opened because it had no connection to my reality? Yeah, that one) talk about something called "night terrors". Maybe this was that, I don't know, but it was horrible. He would cry, scream, twist and writhe around, and nothing you'd try to do would help. In fact, it would make it worse. Don't touch him, don't try to cuddle, nothing. Just let him scream it out as you die a little inside and wonder how he's managing NOT to hyperventilate.

Hard to imagine, looking back, but I remember being in mortal fear of accidentally touching my child while he slept in our bed.......because if you touched/jostled/moved him, even a little, you could set off what would become an hour or more of screaming, crying, waking the neighbors, shattering glassware and causing insomnia. Sometimes, cranking up "Blue's Clues Musical Movie" would calm him down and break the cycle, but often it would not. Those nights were the worst, and I remember feeling so despondent, so hopeless that we'd ever have a normal, real night's sleep. Embarrassing as it sounds, I remember having to decide whether it was better to try and wake him to change clothes when he'd wet them, or leave him wet so we don't risk what could happen if we disturb him.

Contrast that with last night, and they couldn't be more different. This is a hard thing to put into words and explain, but to me it's huge..........my baby sure is growing up!

Friday, June 26, 2009

The Orlando saga, part 1

I'm baaaacccckkkkk! Catching up now, slowly, on the internet time I missed during the 8 days in Florida.....went through some serious withdrawals, but it's all good now, LOL!

I posted yesterday at Hopeful Parents, so go and check that out when you get a moment. It's the tale of the end of Mr. L's baseball season.........*sigh*.

Now, as for the Orlando vacation reports, here's what I think I'll do: I want to give good descriptions, details, etc but there's so much to tell. So, I think I'm going to break this up into more than one post; hopefully, it'll be more manageable that way.

Day 1

Left home at around 8:30 am, ate lunch at the Florida welcome center, checked into hotel (Disney AllStar Music resort) at around 4 pm. Met a great friend and her son for dinner, swam in the hotel pool, and then hung out inside as a massive storm hit the area.
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Day 2

Epcot! This turned out to be the kids' favorite park, actually. They loved the scientific stuff (especially Mr. L, no surprise), especially "Living with the Land"--a ride in which you tour the greenhouses and areas where Epcot staff are growing amazing plants, etc. We rode the resort bus back "home" for lunch and rest time, then went back to visit the "World Showcase" which is the area depicting different countries. We asked the kids if they wanted to try the Kim Possible game....Energizer wanted to, Mr. L didn't at first. Game works like this: You are given a cell phone on which you listen to messages, press buttons when asked, etc. The messages tell you where to go and what to look for; it's like a scavenger hunt. You find hidden clues and then "save the world"! We did it, twice actually, and it turned out that Mr. L was more into it than any of us! Really a cool idea that you've gotta try if you go.

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In the Japan area, we heard a lady singing on a microphone, and walked over to check it out. She had on an authentic Japanese costume, and was beckoning people over for "story time" so we decided to stay. It was an old Japanese folk tale, and she needed a boy from the audience to depict the main character. She tried to get Mr. L to do it, but of course he would have no part of that and even tried to run away! The story teller was a little shocked at his reaction, but she just turned and asked K to do it instead! So here he was, a 38 year old, pretending to be a Japanese boy in a story he's never heard before! But he did great, and my boys seemed proud that their dad was up there in front of everyone.
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Ate dinner in the Morocco section of the park....YUM! We all had wraps--chicken for Energizer, and lamb for the rest of us. It was so tender, very very good! Mr. L really liked it too, which slightly surprised me. We rode the boat back across to the park entrance area, then headed back to the hotel.

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Ok, that's Part 1. More to follow, along with more pics, of course. Hopefully I can get all of these posts done in the next few days before I forget the details of what we did, LOL! :)

Monday, June 15, 2009

F L O R I D A, here we come!

Well, after approximately 2 years of planning, saving up, and waiting, it's finally here......the long-sought-after Disneyworld trip! We're very excited, and definitely as ready as we'll ever be. But I will have little to no internet access down there, so you'll just have to wait about 10 days for my updates and pics, I guess. Sorry, guys! :)

Wish us luck, and decent weather, and manageable lines, and the occasional vegetable to eat in the midst of nonstop pizza, burgers and fries. Take care, everyone! See ya on the other side........

Thursday, June 11, 2009

My personal blog party

Jen, a great cyber-friend and fellow blogger, posted something a couple of days ago that I just love........her idea for a "blog party", an imagined gathering of wonderful blogging friends who can never get together in real life. But if they could, what a great thing it would be and how much fun they'd have! :) So, I am now officially stealing the idea, and here's how my blog party would go. Daydream with me.....

Miss Tafka would most definitely be there. Well, let me restate that: I'd have had her come over a day or so ahead of time, and help me clean up my house! Then, at the party, she'd be teaching us all how to create marvelous crafty things and how to scrapbook so that it looks like something you'd actually want to show off!

Jen, the one from whom the blog party idea originated, would be there too. She thinks she can beat me in a game of "Name that Band piece", but of course, she's sadly mistaken. We'd demonstrate our musical knowledge for the other guests, and maybe she'd even play a flute duet with me or something. (I call 2nd part!)

Another Jen would be there too, and the 2 Jens would be having a bizarre contest.....who has the most in common with me, LOL? Both Jens are really my long-lost sisters, I'm convinced of it. And this Jen might be persuaded to read some of her great poetry for us!

K is also on the guest list. It would be so much fun to meet her in person, and to have a cocktail or two while sharing ASD stories (both the happy and sad ones).

I'll invite Alexa too, just because of how cool it would be to have a real blogging celebrity at my party. She's famous, hadn't you heard? NPR commentator, et al.

L will be there, if she finds a free moment in the midst of house-selling and house-buying. My oldest, Mr. L, is betrothed to her oldest, C, so it would be nice for them to see each other again and get re-acquainted. Plus, L is going to lead the "book club" portion of the party, suggesting great reads for us and facilitating discussion. :)

4onfaith will bring the big, gorgeous Kentucky Derby hats for everyone to wear, and then she'll have us all in tears watching her amazing video about prematurity. My boys are featured players in the video, naturally.

Of course, we've gotta have Molly too, and she'll bring her "been there, done that, don't mess with me" toughness.......and teach us all how to have that too, while never forgetting how to laugh. :)

Sarah and I will hug, laugh, cry, and have a friendly battle over whose 27-weeker has the skinniest legs at this point. Or wears the smallest clothing size. Or is charted at the lowest percentile for weight.

Although she doesn't blog very much these days, I still want Mysh to be there too. I mean, come on, Australia's not that far away, right? But, if she comes to the party, she's gotta bring Nick too. I have GOT to meet him---I know it'll be just like looking into a crystal ball, seeing Mr. L and what I hope he'll be like in 10 years.

Oh, and don't forget Heather...she'll do a stand-up comedy routine for the party guests. Primarily teacher-humor and parenting stories, and I'll be in the front row laughing harder than anyone else. You know it'll be funny when you read her blog and she describes herself as Mom of 2 ferrets! ;)

Sounds fun, huh? A girl can dream, can't she? Even though my party guests are a large collection of diverse women living all over the world, we've got some great things in common--namely, love for our kids and a love for writing and sharing our stories, struggles and triumphs with each other and the world. And just as Jen's blog party ended, mine will end with a toast. Some glasses will have wine, some sweet tea, some Diet Coke (the drink of champions), but that matters not......what matters are the friends we share it with, and we clink our glasses to celebrate that friendship and the amazing way that blogging has brought us together.

Friday, June 5, 2009

Oooh, that smell

No, not the Lynyrd Skynyrd song, sorry.....

This post is about the amazing way that smells can instantly transport you to another time, another place. I've experienced that phenomenon many times before, but it never ceases to amaze me. Today was no exception.

In the children's hospital where my boys each spent their first weeks of life, the NICU is on the 8th (top) floor. The elevators are on one end of a long hallway, and the NICU entrance is on the other end. Pediatric intensive care (PICU) is on that far end of the hallway too.

As things tend to come full circle, I found myself back at the children's hospital today, only as a visitor this time. A former student of mine has her own daughter now, and that daughter is very ill and a patient in the PICU on the 8th floor. Through the miracle of Facebook, I've been reconnected with that student and have followed her updates about her daughter. I knew I wanted to do something for them, if I could, so I decided to make a care package of snacks, bottled water, etc for these parents as they spend hours, days, weeks in that hospital....a situation I know very well myself.

So I packed up the boys this morning, and we trekked downtown to deliver the package. After a successful parallel parking adventure, we went into the hospital and I guided the boys to the main elevators. The instant the doors opened and we stepped inside, I smelled it. Can't describe it, won't even try other than to guess that it's a mixture of disinfectant, hand soap, bed linens and fear. But when the smell hit my nose, I had a simultaneous feeling of pain, dread, sadness in my heart--literally a physical pain in my chest. It was strangely like the feeling I remember having when I began my second tour as a NICU mom--disbelief that I was there again, coming to grips with what I was facing, what I'd lost, what more I possibly could lose.

We rode up to the 8th floor, and when the doors opened on those familiar sights in the hallway, the smell was even more vivid. I'd know that smell anywhere, anytime. Come find me in 20 years, with that smell in a bottle, and I could tell you what it was. I tried not to focus on the surreal aspect of walking down that hall holding the hands of my 2 boys, and just stayed with the task at hand--delivering our package of muffins, pretzels and granola bars. That hall can seem so long, so scary to walk down, and I really never thought I'd walk it again. But here I was, remembering the lonely and fearful walks down that hall--45 days in 2001, 78 days in 2004.

I just keep coming back to the smell, though. Indescribable, but unmistakable. It's like I was right there again, rather than 5+ years removed from those days. When we reached the hall's end, and saw the entrances to the NICU and PICU, I looked toward the NICU side and thought about the babies that are in there today, and about their parents. How many babies are fighting for life today? How many parents are living off of vending machines and sleeping in the little family waiting room? Then, we turned to look at the PICU doors, and I remembered parents I'd met along the way who had older kids here......cancer, transplant patients, etc.

We didn't find who we were looking for, and ended up heading back downstairs to the information desk. They agreed to take the package up for us and get it where it belonged, so we left the bag with them and headed out. But all day, I've been remembering the smell and its amazing connection to memory and experience. We're unbelievably fortunate to have had one of the country's best children's hospitals to care for our preemie boys, but I think you'll understand if I say that I'd be perfectly happy NEVER to smell that smell again.

Thursday, June 4, 2009

Thursday Thirteen, part deux

I'm giving this another go, as soon as I figure out what I want to list 13 of this time........

Ok, I'm back. Here goes:

13 Favorite Songs/Pieces of Music

*warning, this is going to be a totally random list, in no particular order and with no apparent rhyme or reason to the choices* Ok, carry on.....

1. March from Symphonic Metamorphosis, by Hindemith (the concert band version, natch)
We played this at Furman, and it ranks in my mind as one of the best pieces ever for a brass player. What a high when it reaches the loudest part near the end!

2. American Pie, by Don McLean.
This song gets me every time; the symbolism in it, etc. And that line "as the players tried to take the field, the marching band refused to yield" gives me goosebumps, as dorky as that may sound. But if you've marched, and almost been trampled by the gigantic football players, you'll know what I mean.

3. Dream a Little Dream of Me, as sung by Mama Cass Elliot.
Her voice is so distinctive, and unusual, but I love the way she does this song. Fits well in my voice range too, so every time I hear it I have to sing along and do my best Mama Cass imitation, LOL!

4. Romeo and Juliet Overture-Fantasy, by Tchaikovsky.
Again, this is a piece I've played, and it exemplifies the Romantic period better than anything else, IMHO. You've heard it, trust me, you have, even if you don't know the title. Movies, commercials, if they need music to represent someone being all starry-eyed in love, this is what they play.

5. Theme from Gone With the Wind, by Max Steiner.
Are you seeing a pattern here? Dripping with sappy romanticism, but I guess that's a pretty good description of me too, in some ways. ;)

6. Love Shack, the B52s.
Reminds me so much of the days of fraternity/sorority parties at Furman, when the song first came out. A room full of music people....you can imagine we sang at the top of our lungs, and it was so much fun!

7. Suite from Monteregian Hills for brass quintet, by Morley Calvert.
K and I played this several times in college, including on my senior recital. A showy piece, fun for trumpets especially, and with some neat "inside jokes" for the musicians!

8. Moondance, by Van Morrison.
K sings this with his rock band, and has for years, and I love to hear him! :)

9. Incantation and Dance for concert band, by John Barnes Chance.
What a fun piece to play! Wish I could have played flute on this one, but I'm not sure I could cut it in the more technical parts.

10. Elegy for a Young American, by LoPresti, for concert band.
Written in honor and memory of JFK, and this was a piece I chose to teach and conduct the first time I ever took a band to a festival (while student teaching). We got a I!!!!!! And this is such an emotional, moving piece, very powerful.

11. Carmina Burana, by Orff.
The entire music department of Furman did this oratorio, and it was amazing! The stage was full---orchestra with complete wind section, huge chorus, it was wonderful to be a part of. Wish I could sing it one day!

12. The Messiah, by Handel.
Same story---Furman music department used to do this every other year (wonder if they still do?) So, I played trumpet my freshman year, and sang soprano my junior year. Singing was more fun! (ooops, did I just say that?)

13. Ave Verum Corpus by Mozart.
Sang this at Furman, and conducted it with my own chorus this year. One of the few things we did this year that sounded good (to me) and that I was proud of myself for teaching them, etc. The progression of the harmonies in this is amazing!

Ok, if you've not been bored to tears by my music-nerd list, thanks for reading and staying with me. :)

Tuesday, June 2, 2009

One of those dates that reminds you of something

I hate when this happens. I've always been the dates guru in my family, even since I was a kid. I could remember everyone's birthday, and any other random date of any random event you could imagine......I was the one people would ask, "when did ________ happen?" and I could remember.

But every once in a while, a date comes up and I can't (at first) put my finger on the significance. I'll write the date on a check or a paper at school, and think "why does June 2 ring a bell?" "What is June 2?" and then it hits me.....June 2 was Energizer's due date back in 2004. You know how Moms talk about their babies' due dates: "I'm having a June baby" "She's an October baby" etc. Well, Energizer was supposed to be a June baby, but in reality was a March baby. Early March, actually. The difference between June and March is pretty damn huge......several pounds, several months in the hospital, and (so far) 5+ years of therapies, developmental pediatricians and ADHD, complete with medications.

And just to further commemorate this day, we ran into one of the boys' nurses this morning. I see her once or twice a year, because her kids go to the same school that Mr. L does. Today was field day, and Energizer and I went so that we could follow Mr. L's class as they rotated through the game stations. The nurse was doing the same, and she recognized and remembered me, which never ceases to amaze me. She spoke briefly to Energizer, then was called away to her official duties, LOL!

On another topic, I think I need to make an appointment for Mr. L down at the developmental ped. We haven't been in a while, and he's been doing so well that she feels comfortable spacing our visits further apart. But even as I write this, I wonder what she's going to be able to do, what can she tell me or teach me that I don't already know? My concerns right now pretty much revolve around anger and anxiety. Anger, in that he seems to be unable to express a mild form of anger, like annoyance, etc. It's either calm and fine or livid! Yelling at Energizer, yelling at baseball teammates who violate some kind of rule (in his mind). Anxiety has been exhibited too, mostly in what outwardly appears like an irrational fear of something or some situation, but it's obviously not irrational to him. Imagining that something "bad" that's happened will happen over and over and over again, etc. And, he's overly anxious about what others do, specifically Energizer. He freaks out if E is either "breaking a rule" or doing something even remotely "risky", like standing on a pier next to the river as we did a few nights ago. He's uber-focused on getting E away from the edge of the water, telling him to stand back, move etc and then PUSHING him back when he hadn't moved.

In general, I just don't like his attitude and way of responding much of the time, and don't always know what to credit to the Aspie in him, and what's just "almost-8-year-old boy" as they test limits, learn to express themselves, etc. *sigh* But to de-stress and give myself a good laugh every so often, I'm reading a new book: "Shut Up About Your Perfect Kid". Co-written by a mom of an Aspie and the mom of a child with bipolar disorder....I'm seeing a lot to relate to in there already! I'll give you an official review when I'm done, ok?

Friday, May 29, 2009

almost sprang a leak

The scene: a football stadium, Catholic high school, upper-income neighborhood. Late May, hot and humid Friday morning.

The cast: 200 newly-minted high school graduates in green cap and gown, 1000 spectators in the stands, 50 or so faculty and staff in black gowns and multi-colored "hoods". One of them was me--black gown, pink and purple trim (isn't it interesting that pink is the official color symbolizing music?).

The actions included, but are not limited to, the following: sweating profusely, listening to speeches, watching 200 young people receive diplomas, sweating profusely, listening to Pomp and Circumstance being played over and over and over and over.....oh, and did I mention sweating?

But when it was over, and time to leave, I had a moment in which I wasn't sure I was going to hold it together emotionally. As much as I've had my spirit broken by that place, I'm gonna miss it too, in some ways. And as I walked around afterwards, looking for some of my students to give them one last hug or handshake, I felt drops of H2O leaking out of the corner of my left eye. And it wasn't sweat. I was determined not to spring a big leak, at least not in front of everyone. I managed to wipe away the drops, but they kept being instantly replaced by more. Slow and steady leak.....

I really didn't find the students I wanted to see, in the crush of people trying to get out of the heat. I chatted with a couple of teachers, several of whom still seemed to have not heard I was leaving, and then walked to my van. And that was it. Took off the gown and hood, and drove off of the island. Door officially closed on that chapter of my life. I didn't expect to react the way I did today. It's almost like I graduated too. When the speakers talked about "leaving this place that's been such a part of our lives, going out and making our mark on the world, making a difference" etc, it felt almost like they were talking to me too. Hope I can live up to the expectations--the ones I set for myself.

Thursday, May 28, 2009

Thursday thirteen

Stealing an idea from my blogger buddy Tafka today.....here is the debut edition of my Thursday thirteen!

13 Things about Me

1. I'm going to be a college student again starting in August! It still doesn't seem real sometimes, but I bet it will when I see the first class syllabus and list of assignments!

2. I love living in Lowcountry SC. Not sure I'd want to live anywhere else! There's so much to do and see down here, and I love just looking at the natural beauty of marshes, rivers, etc.

3. When I was younger, I always figured I'd have girls one day. I was such a "girly girl" myself, the complete opposite of a tomboy, and yet here I am with 2 active boys! But I wouldn't change a thing about that!

4. I've never traveled outside the US. Not even Canada. Truth is, I feel pretty deprived in that department, and I'm not sure I'll ever be able to rectify it either. My ultimate vacation (outside the country) would be to England...specifically London. I know, it's rainy and dark, but the history there is just such a draw for a nerd like me. ;)

5. The West Wing is my absolute favorite TV show of all time. When it was still running, I would literally RUN out of Wednesday night choir practices to try and get home in time to see the opening credits.

6. I am love-love-loving Facebook. I can't think of a better way to reconnect with so many people from high school, college, former students I taught, etc. On any given day, I can chat with my college housemates, music fraternity sisters, high school band friends, people from my church, family, coworkers of past and present.......it's simply amazing.

7. I'm trying hard to improve my eating habits, and to lose weight along the way if I can. Really have only lost about 7 lbs so far, but I'm optimistic and hope to lose at least 5 more before......

8. We're taking the kids to DisneyWorld for the first time in about 3 weeks! I cannot WAIT to see their faces, their reactions to it all. We're staying in the AllStar Music Resort (gee, I wonder why, LOL) and will do all of the Disney parks, plus Universal Studios and the Wet-n-Wild water park. Oh, and a Tampa Bay Rays baseball game on our way back home.

9. I am both fascinated and overwhelmed at the same time by the broadness of the autism spectrum. And I really do accept that my son is on that spectrum, but sometimes I feel like maybe we don't belong in that "autism community", like we're TOO lucky or too fortunate in how well Mr. L is doing. It's like we're in no-man's land, not belonging completely to either group.

10. As strange as this sounds, coming from a musician and music teacher, I really don't always like to listen to music while in the car. Especially after a school day, I just want to hear talking........so I listen to talk radio, or one of the comedy channels on Sirius, etc.

11. I'm a political junkie from way back. The 2008 election cycle was the most fascinating, exciting and amazing thing I've ever experienced in my lifetime of watching that stuff. Of course, it is always more fun when your guy wins, right?

12. I still have bitterness, anger, resentment and frustration in my heart regarding my preeclampsia experiences and the premature births of my boys. There is so much about pregnancy I missed out on, and that might sound trivial but to anyone who's been through what I did, it's most definitely not. I hide it pretty well nowadays, but it's there...jealousy, even jealous of dear friends when they "beat PE" or just have plain old normal easy pregnancies like everyone should have but some of us don't.

13. I am incredibly blessed, far beyond what I deserve. My boys are alive, growing, thriving, smart, active, funny, talented, and far too many PE survivors sadly can't say the same things. So when I complain, or whine, or have temporary amnesia, maybe you can help remind me about #13.........

Monday, May 25, 2009

packing up and moving on

Most band directors I know, and most teachers in general, teach at several different schools over their career. I'd say 3 schools is typical, even more is pretty common as well. K is in his 4th school right now, and I expect he won't retire from the current job, meaning there will be some more changes in his future.

And me? Only 2 so far, and if my career takes the direction I am hoping for (into Music Therapy) then I may finish my life as a teacher with only 2 schools under my belt. I taught at School 1 for 8 years, and now have finished 6 years at School 2. But tomorrow, I will finish packing up my personal belongings from my classroom, and turn in my keys. On Friday, I will go to graduation and march in with the faculty, listen to the seemingly endless list of graduate names being called, then get in my car and drive away from there for the last time. There are a few people around there, some students and some teachers, that I'll miss and wish I could stay in touch with. I'm not sure that I'll be able to, but it's a nice thought, at least. The school will be celebrating it's 100th anniversary in 2015, and I used to wonder if I'd still be around at that point.......I know it'll be a BIG deal in the community. But I've been ready to leave for a while now, just scared to make that jump. I'm at peace with it now though, knowing it was the right decision. Emotionally, I'm outta there already!

So, thanks BEHS for coming along at just the right time for me, and giving me the chance to teach Band part-time when I needed it. Thanks to the Band kids I taught there over the years......thanks for being brave enough to get out there and perform with me in front of your classmates, daring to thwart the "athletics is king" attitude that is so pervasive. I think we made some good music, and had some fun along the way. I hope you learned something, and that music will continue to be a part of your life. I never saw myself teaching high school, but I'm glad I had the chance to do so. We can remember Solo and Ensemble, getting soaked in the rain at Homecoming, the overnight trips to Myrtle Beach for Region, playing PDQ Bach, the Hey Song, 2001.......it's been a challenging and mostly fun ride. Thanks for going with me.

Thursday, May 21, 2009

I can't believe I'm admitting this........

I recently was introduced to a blog I'd never seen before, and I've grown to really enjoy reading it. It's written by a fellow PE survivor, and Mom to 2 angel babies. Her most recent posting really hit home for me, and it's what inspired the upcoming confession you're about to receive. Check out her post called Pickles.....it's very well-written and thought provoking. I know I won't do as good a job with mine as she did, but here goes..........

I have something you'll probably find quite surprising in my freezer. Go ahead, guess. Cherry Garcia ice cream? Nope. How about venison? (well, we're in the South, it could happen....) Nope, strike two. Ok, I'll tell ya. Small bags of frozen breastmilk.

I think this needs a backstory, don't you? It's painful to tell, but I've come this far so I might as well finish it. I am by no means a member of the La Leche League, not a "breastfeeding nazi" as I've heard the term used, but I had always intended to try breastfeeding when I had children. I am familiar with the health benefits, for Mom and baby, and just always figured I'd do it.

But the hard, unflinching reality of my situation is that I never was able to really breastfeed in the true sense, with either of my munchkins. Never. Preemies who are sick, on ventilators for lung issues, etc are not able to manage the suck/swallow/breathe routine well enough to do it, they just can't. The nurses in my hospital and in the NICU heavily promoted pumping the milk so that it could be available for my boys once they were ready, and I dutifully did my part. Starting on the day of delivery, and round the clock from then on, even while I was still a patient myself. Those lovely pale-yellow hospital grade pumps became my most intimate friends........pun intended. Nurses brought one to keep in my room, and there were pumping rooms outside the NICU too. I was given small plastic cups with yellow tops to collect the milk in. I'll see those cups in my mind's eye for the rest of my life. I desperately pumped and pumped and pumped until I bled, truly. I carefully collected every precious drop of the milk in those cups, and turned them in to the NICU secretary several times a day---festooned with little white labels on which I'd written Mr. L's name, and the time and date of the pumping.

Day after day after day during the NICU weeks, I pumped and pumped. Stressed and freaked out if I was going to be away from the pump at the time I needed to do it, always worrying about the never-adequate milk supply, looking forward to that magical day when they took the first drops of my milk and fed it to my child through an NG tube. One tiny cc at a time. "Ooh, today he's up to 2 cc". "I think we can try another cc at the next feeding". The milk had to be so carefully thawed after freezing, carefully kept cold during transport to the NICU...it was so complicated and so artificial. Everything that the supposedly "natural" process of nursing your baby was NOT supposed to be.

When the boys came home, I kept on pumping, thanks to the hospital pump we rented for an exorbitant amount, and then thanks to a friend who gave us her pump she no longer needed. With Mr. L, the supply of milk just completely evaporated after his first couple of weeks at home......despite taking fenugreek, drinking fenugreek tea, you name it, I did it. With Energizer, I lasted longer with pumping, but as time went on, my supply did dwindle from its already-low level, and I wasn't able to keep up with his needs. I drank that horrid tea again, took Reglan (weird that its side effect is to help with milk production), and mixed the few ounces I could produce with some preemie formula. We were desperate for him to gain weight, as he came home still only weighing 4 lbs. 4.4 oz, a number that is burned onto my brain. Pediatrician was labeling him "failure to thrive", and the idea of a feeding tube was always dangling out there, to be inflicted upon us if nothing else worked.

And yes, in case you're wondering, I did try the act itself, after the boys were off of the vent. They still had oxygen via nasal cannula, and the suck/swallow/breathe thing still wasn't happening, but I did try. Both in the hospital and at home. Energizer would just cry and cry after we tried at home; I could tell he'd not gotten enough to eat, and how could I do what the BF nazis would say? "Don't introduce the bottle, don't give him an option, just keep doing it and he'll catch on" etc. Hmm, I think I value my child's life and healthy development over the idea of him feeding at my breast. If he gets the damn milk into his stomach, but it comes by way of a bottle filled with milk I pumped, what the hell difference does it make?

Gerber sells a handy little Ziploc bag designed for breastmilk storage, and it is here that my story comes full circle. The bags are made to stand up on their own, and are marked on the side with graduated lines to measure the amount of milk inside. I bought them, and began using those to store my milk at home, rather than the hated yellow-capped cups. I kept on pumping, getting fewer and fewer ounces every day, until Energizer was 9 months old. That's 3 months in the hospital, and 6 months at home. I'd thaw out a bag of frozen milk and ration it out over the day, so that each bottle he drank would have at least a drop or two of my milk in it, and the rest was Neosure preemie formula (one of the foulest smelling concoctions on earth). Eventually, I reluctantly stopped the pumping when it became clear I wasn't going to get any more for my efforts. And I slowly dipped into my frozen stock, until there were only about 3 Gerber bags left in the freezer. The last one I took out and thawed seemed freezer burned, if you can believe it, and he didn't like how it tasted apparently, so I just didn't thaw out any more, and I left the bags there.

I'd notice them occasionally, and think "how long am I going to keep those?", but just not have the heart to throw them out. When I'd rearrange the freezer contents, making room for new purchases, there would be those bags of milk, STILL there after many months, then years......Energizer is 5 now, and the bags are still there. At one point, I said something to K about it. Something very quick, and embarrassing, basically "don't throw those away, I'm not ready" and he has nicely accommodated me. This is so irrational, so insane, but it would feel like the final acceptance of my failure if I threw these out. The final blow, the final reminder of how my pregnancy, birth and parenting experiences have diverged from what I wanted in so many ways. And it hurts. I can't put it any better than that, it just hurts. It's been several years, I'm supposed to be ok now, right? Truth is, I'm not, and I guess I won't be until I'm ready to throw that milk away. I never breastfed my sons in the glorious "earth mother" way that comes so easy to so many, is so natural and has been practiced since the dawn of time......but as long as I have those bags in the freezer, I have proof that my body did in fact produce milk at one point in its lifetime. Not much else even proves I was ever pregnant, other than the precious lives of my children. No preggo belly pics, no labor......but I've got that milk. Check back in a few years to see if I've still got it. Betcha I will.