Sunday, November 30, 2008

not like you see in the movies

Last year, we discovered that even in the humid, sandy Lowcountry there are Christmas tree farms. The kind of places that let you roam around until you find the perfect tree, cut it down yourself and haul it home. For some reason, I just figured those only existed up north, or in the mountains or Colorado or something like that.....but, turns out SC has several of them, and a couple within decent driving distance for us. So we went, had a blast, and determined that this was what we wanted to do every year from now on. So much more like the "traditional Christmas" that you read about, see in movies, etc.

Fast forward about 365 days, and it's time for the 2nd annual family-trek-to-the-tree-farm. Except this time, it's already been pouring rain for 24 hours, and there's no end in sight. But looking at the family calendar of the next few weeks showed absolutely NO other day to do this, and we're used to getting the tree up on the Sunday after Thanksgiving, so off we went at about 1 pm. The boys were in their old sneakers, we had an umbrella in the van somewhere.......I think......What could go wrong?

How about everything? That tree farm should have advertised itself as "tree bog", I kid you not. Practically every square foot of land was underwater, puddles as far as the eye can see, and any "land" you did see turned out to be more like mud or quicksand once you stepped on it. We tried it, and within the first 2 minutes the boys and I had soaking wet shoes and muddy pants legs. Yuck! I gave up and waded back to stand next to the car in a relatively dry spot. K put E on his shoulders, and A followed behind as they pushed on into the plot of trees. K had to shout to me "do you like this one? What about that one? Doesn't it seem lopsided?" etc until we finally settled on one. I persuaded the boys to make their way back through the puddles to the car, then I took their disgusting shoes off. Eww, and they were nasty. They were each sitting sideways in their carseats, feet sticking out of the car door so I could take off socks too, which were dripping wet. And you can imagine that there was no way for me to hold that elusive umbrella, so I was getting wetter by the second. Finally, I got into the driver's seat, took my own shoes off and knocked them against the outside of the car door in a futile attempt to get mud off.

Whew, closed the car door and we were safe. Not dry yet, but safe from further drenching. Until K came to the door and reminded me I needed to write the check to pay for the damn tree.........I'm not even sure the check will be accepted by their bank, based on how wet it was by the time I got finished. Is there a a maximum on water droplets per square inch? I think we passed it.

Can I just say that today was NOT that idyllic, beautiful, traditional Christmas family outing? The tree's up, it's dry, it's decorated and it is truly pretty. Maybe one of our prettiest ever. But the process? Not something I want to repeat. Next year, I'm checking the weather forecast before we decide where to buy the tree.

Tuesday, November 25, 2008


Well, I've been Jen at Unique But Not Alone. The instructions are these:

1--choose the 4th picture folder on my computer
2--choose the 4th picture
3--explain the picture
4--tag 4 other people

Here's the pic:


This is A at his 6th birthday party, a bowling party. One of his buddies is the kid with the awesome blond hair, and E has his back to the camera.

This is fun, thanks Jen. :) Ok, now I'm tagging Tafka at House of Tafka , Heather at Bubbles and Ducks , Betsy at Belphia, and Sarah at Two Princesses, a Queen and and old Frog . Have fun, girls!

Monday, November 24, 2008

I wanna go!!!!!!!

I just need a place to whine, to vent a minute. What else is new, you say? Yeah yeah yeah, shut up, it's my blog, after all, right? ;)

I'm involved in an online support group and forum for Parents of Children with Autism, and through that group have made some really wonderful friends. So many of the ladies there are so incredibly strong, so wise, so knowledgeable, and funny and sweet to boot. Why am I telling you all this?

Well, a group of them is planning a trip to Vegas, coming up in February 2009. So now, on the forum, they're chatting about plans, ideas, where to stay, what to do or see, etc. WAAAAHHHHHHH, I wanna go. :( It's not gonna happen, no matter how much I need it.

They're planning on doing such fun stuff.....time at a spa, maybe some shows, gamble a bit, hanging out with the girls and some cocktails, etc. And I NEED this so much, after the last few months we've had around this house. But 2009 is going to be such a busy and expensive year for us, there's just no way. Going to Disneyworld next summer, still hoping to move across town to get closer to school and work, etc.......there is not a spare $1000 lying around to send me to Vegas for the girls weekend.

Sometimes, I feel like my life and experiences have been so incredibly limited. Never left the lower 48 states, not even to cross the border into Canada for an afternoon like K has. And it's looking like I never will. I want to travel, I want to see things and learn things and do things.......but until teachers start getting paid like doctors or lawyers, I'll be staying home. And that includes Vegas. :(

better than I could say it

Today's posted is something borrowed, shared with me by a great cyber-friend, a sister just like the ones described below......

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland" and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy. We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.
I know that many of you who read this blog are also my sisters, in this special way. If you are, I send you extra ((((((((((hugs))))))))))) and want you to know how much I appreciate your support, understanding, and friendship.

Thursday, November 20, 2008

something happy for a change

....and damn it, it's about time. :)

Went to pick up A from school yesterday, driving around in the car loop, waiting my turn to drive up to the sidewalk and have a teacher open the van door to put him inside. (gotta love elementary school!) The music teacher happened to be the one helping him today, and as she helps him step up into the van, she says to me "I need to talk to you" in a very serious-sounding tone and serious face.

Fear grips my heart, wondering what on earth had happened today......a major meltdown, horrible teasing and making-fun of him, he said or did something totally inappropriate, etc. She closed the van door behind him, and walked around to my side. Still looked very serious, and says to me "do NOT say a word" and then leans in to whisper to me. She also said to A "cover your ears, I need to tell Mom a secret" which he did, without hesitation.

Then, up close, she started smiling and said "Mr. D (drama teacher) and I have talked over who should get special parts in the Christmas show, and we want A to be the King!" I smiled too, naturally, and clarified that she wants me to wait for them to tell him, not to reveal it myself, and she agreed. Apparently, the King is "Good King Wenceslas" and this is basically the lead part!

We said goodbye, and then he took his hands off of his ears, and said "is it a secret just for grownups?" I said yes, that for now it was just something for grownups to know. But wow, this is HARD to keep this secret from him, and from the world. I'm soooooo very proud of him and excited for this recognition! Thank you, Lord, for giving us the opportunity to send our kids to this wonderful school with wonderful teachers! :) Way to go, little man. Pics to come......the Christmas show is Dec. 16.

Tuesday, November 18, 2008

a turning point, maybe

The last week has been one of the most stressful I've had in a long time. Maybe among the most stressful ever. We've pretty much run the whole spectrum of emotions.....fear, anger, resentment, worry, relief, even faint hope. I'm just working to take this one day at a time, and to focus on the small victories as they come. :)

How did this week from hell start? With me being told that E will no longer be allowed to attend the preschool he's been in since he was 5 months old. Even though I just typed that sentence, I still find it somewhat hard to believe this really happened. And now, almost a week removed from the initial shock, I have been able to put a thin layer of gauze over the wound. It'll heal, but it'll take a while, and right under the surface is some pretty hefty anger and bitterness.

Sometimes, I just want to rip that gauze off and wallow in the anger a you mind? I just want to ask "who do these jerks think they are?" Discussing my little man among themselves, and then ganging up to call the school en masse to complain. Claiming all kinds of BS, like their kids are scared of E.

PLEASE, give me a damn break!

Most of these people live in an entirely different world than we do, and our little circles only intersect in this one place, that preschool. I can say pretty comfortably that the parenting lives of these people have NO similarity to mine, and that they have no experience with or sympathetic view of anything resembling special needs. All they know is that little princess doesn't want to be in class with that boy anymore, or they don't want her exposed to that kind of child (who obviously must have horrible parents that either 1) do not discipline him or 2) need to pursue psychiatric care for him).

Excuse the hell out of me, people. Didn't realize that your child's education was so incredibly hampered by being in class with my son. I thought maybe the problem was the teachers who have no control of the class, or the overcrowded room with too many kids, or the numerous other kids who don't listen/can't stay still/can't keep hands to themselves. And by the way, in case you forgot.........they're freakin' 4 YEARS OLD!!!!!!!! This is not life and death, people, nor does it ruin their chances for going to Harvard or being Miss S. C. if they have to suffer through K4 with a child who might have different needs and challenges.

But you know what? You know who has the last laugh? We do, thank you very much. Because now, E is a successful, participating member of another K4 class, a smaller class with a better teacher, better curriculum, more space, and better facilities. And he's happy. And behaving well. And learning. And excited about school.

So you take your precious little children to your school every day, ok? And just keep on deluding yourself, thinking that you "won" and relishing the feeling of power in knowing that you ran off a 4 year old. You made the director cave, and flexed your muscles (i.e. money) to get what you wanted. Never mind the years worth of work and service I've dedicated to that place. Never mind the loyalty, never mind the connections we have. Screw that. Bottom line, YOU couldn't meet my son's needs. That's clear, now that we have found a place that can. So we're better off, and I'm closing the door on that part of my life, and his.

(that felt good, thanks for listening) :)

Thursday, November 13, 2008

Damn preeclampsia!

That's what I feel like saying today. Saying it LOUDLY, screaming it from the rooftops for anyone who's listening to hear! Damn preeclampsia!!!!!

I need a scapegoat, that's my current problem. I need someone or something to blame, to be mad at, to hate for the things that have been done to my family. And the nearest and most logical scapegoat is preeclampsia.

Isn't it PEs fault that my babies were born far too early, too small and too sick? If not for PE, I might have enjoyed a normal, happy, healthy pregnancy. Might have gone through labor rather than having 2 c-sections. Might have brought my babies home with me in 2 days, rather than 2 or 3 months.

And it's not just about pregnancy and birth.....if not for PE, my children might very well be neurotypical today, normally and typically developing little boys with normal, typical lives. Seems weird to wish for typicality, to wish for ordinary-ness, but I do. Without preeclampsia, which then caused the prematurity, A might not be on the autism spectrum, and E might not have ADHD and severe aggression and impulsivity.

Maybe it's ridiculous to blame it all on the preeclampsia, but somehow it helps. Gives me something to lash out at, something to hate, something to focus the anger and the hurt on. And it does hurt, all the time. Maybe that's pathetic, considering my last bout with PE was nearly 5 years ago. But because its effects are so long-lasting in my kids' lives, and in MY life, it doesn't seem to matter how long ago it was. I HATE preeclampsia! May the researchers find a cure for it, soon, and a way to prevent other families from having to suffer pain and loss because of it.

Tuesday, November 11, 2008

Scared and sad

I think this must be what depression is. I've experienced it before, and don't remember feeling quite like this, but I just know I feel the classic way you hear depression described as.......tired, sad, feel like just crawling into bed and staying there. I'm not keeping up with stuff for school (work) the way I need to's easier to procrastinate and let things slide. Takes all of the effort I can muster, sometimes, to do anything but just sit in front of the computer and go back and forth between the websites I visit. I nearly couldn't get up and make dinner for my children tonight, I kid you not.

And the biggest reason for this "funk", this emotionally exhausting and draining depression phase? My youngest, little E, my micropreemie miracle. Every day brings new lows in his behavior, at home and at school, and it's so scary to see this precious little guy with the sweet lispy voice get so very angry and lash me, at teachers, at friends, at everyone. He has literally no impulse control, seemingly nothing inside that pulls him back or stops him from doing the first thing that comes to mind when he gets upset or mad.

In one of those bizarre, random trains of thought that I sometimes have, I was reminded today of the play "The Crucible" by Arthur Miller. One of my favs, but I digress. It's a depiction of the Salem Witch Trials. At least one man, as I remember, was accused of witchcraft and killed, but he wasn't hung, he was "pressed to death". He was made to lay on the ground, and heavy stones were placed on his chest, one by one. Guess the accusers thought that he'd eventually give in and admit to being a witch, but he didn't. They say his last words were "More weight". He knew he was innocent, and was determined not to admit to something he hadn't done.

Why the hell did she tell us that story? you might ask. Well, you know my love of metaphors, and right now I feel like I'm getting the "pressed to death" treatment too. Every day, a new heavy stone is added to the weight I'm carrying, worrying how to help E and what on earth we can do about all this. "He kicked Miss Mary today" = add another stone. "He was so hyper, couldn't calm down, and then he bit Sara" = another stone. "We just didn't know what to do for him this morning, sent him to the director's office twice because he was throwing chairs" = another stone.

When does the weight get to be too much? When it crushes me? How far am I from that point? Is there a way to lift some of the weight off? I'd do it in a second, if I knew how. Instead, I just slog onward.....eating my way into oblivion and barely getting through the days. Can't keep up with anything, or so it seems, and when I do have a spare few minutes to do something productive, I usually can't bring myself to do it. Too hard, too much effort needed, I'm not up to it. I know that this isn't healthy. If you're a praying person, send some our way, would you? Thanks. Something's gotta give, as they say, but we just don't know yet what (or who) that something will be. :(

Friday, November 7, 2008

the post-election wrap up

Well, I said something about this in my last post about the blog award, but just felt like it wasn't enough. No words, truthfully, would be enough to really do justice to how it feels to have won this election.

Does that sound weird? Are you thinking "does she really think SHE won it?" Well, as a matter of fact, I do. But not just me. All of us, all Americans. I am fully aware that several million people disagree with me right now, and might never be convinced, but that's ok because the freedom to dissent is part of what the Founders wanted and part of what makes America great.

Nevertheless, I'm convinced and I know in my heart that our country was the true winner on Tuesday. With Barack Obama as our next President, I feel hopeful about the country's future again. We can regain our standing and respect in the world, and begin to bring the troops home from Iraq, finally. We can show respect and consideration for the rights of all, not just a few. I will be able to watch video of our President in public appearances without cringing in embarrassment; thank God for someone who can complete a coherent sentence and will speak respectfully, intelligently, and without the ever-present smirk and condescension.

Diversity will not be a bad word, or just a catchword, but a reality! And yet, having said that.....I believe that my family and I have infinitely more in common with the Obamas than with the Bushes, despite the differences in skin color. Maybe we can actually not just embrace diversity, but some kind of "post-diversity", because the more we learn about so-called "diverse" people, the more we often find that we are alike, not different.

So, let's send Mrs. Palin back where she came from, and hope she won't be heard from again anytime soon. She needs some time to find a publication or two she wants to read, after all. As for John McCain...I just shake my head at the thought of what could have been. I admired you, even thought I could support you as a candidate, once upon a time in 2000. But you sold your soul, sacrificed your own standards of acceptable campaign behavior, all for the chance to be President. And where did it get you? Nowhere except back to the Senate. Don't you feel dirty now, after the tactics you used and allowed your people to use? What a used to stand for something, and now you stand for nothing but yourself.

But let's end on a high note, shall we? The moment, at 11 pm EST on Tuesday night, when the networks called it and proclaimed that Barack Obama would in fact be the next President.....I get chills thinking of it. It was like a comforting wave washing over me as I heard the words, and I just sat mesmerized in front of the TV, drinking it all in. After the seemingly endless nightmare of the last 8 years, it's still hard to believe it's about to end. Congratulations, Mr. President-elect. A music teacher and her family from South Carolina are immensely proud of you, and are beaming inside with a bright blue light in the crowded sea of red around us. Thank you for all you have done, and for what you will do, and may God protect you, your family, and our country.

I feel special!

Thanks, Miss Tafka, for bestowing on me my first ever blog award! WOO HOO!!!! I love blogging, don't get to do it often enough these days, but am really honored to have this award and be able to display the award banner here---> :)

Anyway, the receiving the award means you need to list 6 things that make you happy. So, here goes:

(in no particular order)

1. performing music. I'm an instrumentalist first, and a singer second, even though these days there's much more singing than playing going on in my life. But getting the chance to be a part of good musical performance is a feeling that cannot be duplicated any other way. I'm so thankful for the gift of music and the ability to perform, and hope that I will always have that opportunity, one way or another.

2. the election of Barack Obama as our next President. (you knew that was coming, huh?) It renews my faith in the political process, and in the people of this country and their ability to be inspired and excited about government and our leaders. No, this won't solve all of our problems, and I know the road ahead for him will be tough, but the fact that he fought his way through the lies and smear campaigns and came out on me chills just to think of it, even now.

3. Seeing things through the eyes of my boys. When we go to new places, see new things, or enjoy special times like Halloween or Christmas, it makes those events so much MORE special when I see how much the boys are enjoying themselves. Watching them get excited about what Santa brought, or splashing in the ocean, or even watching a cool new can't beat that for instantly putting a smile on your face. :)

4. Driving. At least, most of the time. Let me rephrase that: The part of driving that involves movement, NOT sitting in traffic jams, is the part I enjoy. I really do like it, strange as that seems! LOL, maybe I ought to have been a truck driver! Guess it's a good thing I've got a decent-sized commute every day to school. ;)

5. The endless variety of things to listen to on Sirius satellite radio. :) Great talk radio stations (lots more progressive choices than you hear around this area....), every kind of music format you can imagine, great comedy stations, news, old radio shows from the 40s/50s etc, even a station for the kids' music. (*see #4, about driving. These two go hand in hand most of the time, because when else do I get a chance to listen to the radio?)

6. My hubby. Not like we see each other much these days, with the busy school/work activities that we both have going on night and day, but I still wanted him to be on this list. He's a great guy, great dad, tries hard to help out around the house when he can, etc. I know how lucky I am to have him, and hope that he realizes how much he is appreciated. :)

There ya go, Lori. :) Thanks again for the award, I love it! Now, I think I"m supposed to pass it on, right? And like you, I know so many of the same blogging friends that it's hard to find 6 to give the award to, so.......I'll just choose Jen at Unique but Not Alone, and Betsy at Belphia. Congrats girls, hope you like the award as much as I do! :)