"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".....

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 Fragments

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



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!

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?

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!

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! :)

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........