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.


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.


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.

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.

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?