May is Preeclampsia Awareness Month

.....so, now you're aware of it, right? ;)

Seriously, I mention PE awareness because it leads me to what I wanted to discuss with you tonight, boys and girls. A few days ago, in my blog-visiting, I ran across a blog that had this image on it:



So, I checked out what the petition is, posted the image on my FB page and on this blog. One of my FB friends asked what it was about, so I explained briefly after consulting the official petition wording so I'd get it exactly right. And it started me thinking.....

I'm gonna admit something that will probably sound very selfish, or juvenile, etc, but here goes: I have a love/hate relationship with the March of Dimes. There, I said it. Yes, I did have 2 preemies. Yes, I've participated in the March for Babies several times (also known as WalkAmerica). My family was even a local Ambassador Family a couple of years ago, and I did newspaper and TV interviews, made speeches/public appearances, etc. And you're thinking, "so far this sounds like the love part but not the hate part", right?

Well, how can I sum it up? I think that the MOD must be looking at the growing problem of prematurity this way: There are some causes of prematurity we cannot prevent, cannot change, and do not even know why they occur. But some of the causes we CAN address, can help to change and make a difference. So we're going to pick our battles for the most part, working on those things that we know can be improved by our efforts. Consequently, so much of what they publicize has to do with educating pregnant women about "preventing preterm birth" as they put it.

While K and I were still serving as the Ambassador Parents, MOD invited us to the state volunteer conference. It was a night in a nice hotel, dinner on site with other volunteers from around the state, awards were given for money raised in the Walk that year, etc. We didn't have to speak at that dinner, and there was a big crowd so we were pretty anonymous. But it gave me a chance to see up close the "talking points" about what MOD is addressing, etc. And I came away feeling guilty and vaguely insulted or criticized. I know, that's just me being overly sensitive, but that's who I am.

In the text of the preemies' petition, it says this:
We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care. Ok, so I guess that means if you had a preemie, you must have had no health care and/or have been smoking like a chimney, right?

Or how about this:
We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines. Yeah, because I just chose to have my babies surgically removed from my body at 27 and 29 weeks, even though I should have waited longer. You know, avoid those pesky stretch marks by getting that baby out before anyone can even tell you're pregnant.

So often, on the surface at least, MOD seems to be conveying the message that the answer to the prematurity crisis lies in educating people, getting women adequate health care, and taking folic acid. Well you know what? Screw folic acid. Lot of %#%@& good it did me, huh? Obviously, those poor pitiful Moms of preemies must just not know any better than to do things that are risky, must not even have a doctor to care for them, must need our help, right?

Look, before anyone storms off in outrage, let me say this: I know that MOD has done and continues to do amazing work. Surfactant is a miracle, and it helped both of my boys survive, no question. And I agree with them that anything which causes a baby to be born too soon is something we'd like to change and eradicate. But I can't help feeling that, when I support MOD (speak for them, wear the shirts, sign the petition), I'm endorsing the public statement which (when translated) says: Hi, I'm a mom of 2 preemies because I did something wrong. Please help us so that no one ever has to make this kind of mistake again, or ever has to fail the way I did.

Told ya I was super sensitive. Please go sign the petition anyway, ok? Despite my insanity, sign it anyway. And support MOD in whatever ways you can. But look......when you do, just remember (and spread the word) that not all prematurity can be prevented, not all Moms of preemies did something to cause it to happen, which means it was not their fault! They'll still feel guilty (trust me on this one), but it will help them (ok, us) to be reminded that someone out there knows that what happened to our babies was out of our hands, not the result of ignorance or intent to do harm, but the result of a horrible disease for which there is no cure. That's how you can help fight the battle against prematurity........and you'll raise awareness of preeclampsia at the same time.

Not Me Monday

Several of my blogging friends have adopted this idea, so I decided to join in. The idea is that you describe several things that you have not done recently, if you get what I mean..........LOL! Here we go:

Today, I most definitely did not go a dermatologist for the first time, and he did not remove a suspicious mole from my face for biopsy. I am not at all worried about the results, which I won't get for a week.

I did not just turn the HEAT on in my house, because it certainly is not freakin' 55 degrees in South Carolina in May!

And lastly, I absolutely am not procrastinating (darn you, internet) about doing the lesson plans and reports I need to turn in for a teacher recertification class. Apparently, I do not plan to keep my certificate active when I do not go back to school in the fall........

blog facelift

So, how do you like it? Super-gigantic hugs to my buddy Tafka for the awesome blog header she designed! You rock, girl! And then I got a matching background at Cutest Blog on the Block.......goes together pretty well with the header, I think. I love the whole brown/blue idea anyway. Yeah, baby!

Well, it's been a week since my Mother's Day shout out, and I've been busy finishing up school (WOO HOO!) and trying to decide what to write about next. I don't want to get all mushy on ya, but my thoughts keep coming back to the fact that I'm closing a chapter of my life as we speak, and continuing to hope and pray that this move is the right one. Because I am an official Broadway-musical nerd, the quote that comes to mind is one from The Sound of Music......"When God closes a door, somewhere he opens a window". So today, that door closed when I conducted the chorus in the Baccalaureate service for the seniors. Felt strange to know that I won't be doing anything like that again, at least not any time soon.

And in yet another nerdy allusion, as I closed the door of my classroom when I was about to leave, I remembered how the very final scenes of several famous TV shows had this moment where a character would turn off the lights, stop at the door and look around wistfully for a second, then close the door and walk away. I know the Mary Tyler Moore show did it, and I think Cheers did too. I am such a sap, it's pathetic.

Kids are doing well, baseball season's chugging along with Mr. L's team at 4-1 right now. Energizer made a friend for life this afternoon at a restaurant where we ate supper. It's a barbecue place, and we'd never tried it but it turned out to be very good. E had just had a mini-nap in the van on the way there, so was still groggy and subdued at dinner which is always a good thing where he's concerned.

Anyway, he wanted to order his own food, so he softly told the waitress his choice, "chicken fingers" when she came to take the orders. When she brought the food, he was so excited to see it that he leaned over across me in the booth, took her hand and kissed it like a true gentleman! She was so surprised and touched by it, you could really tell. :) Then, as we were about to leave, we stepped out of the booth and started getting raincoats on (DON'T get me started :( ). She came back over to say goodbye and thank us, etc, and he gave her a big hug! Granted, it was a hug around her thighs basically, since he's still such a little guy, but that was ok with her! She kept saying how sweet he is, etc etc. :) No argument from me on that one!

To my special sisters

Today is Mother's Day, and it's my day to be discriminatory.

What I mean is......every mother loves her child, and they are all to be appreciated and valued, not just today but every day. But as a member of a smaller group, the moms of special needs, I selfishly want to take the opportunity today to recognize and celebrate that very special sisterhood. The essay below says it far, far better than I ever could. And if you, the reader, are a part of this sorority (you'll know it if you are), then you have my prayers for you and yours, and wishes for a wonderful Mother's Day, today and always.


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 NICU units, 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 psychiatry.

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 try.

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.
_________________

can I really do this?

I had a real "shake me up" moment this afternoon, while Mr. L and I were at the therapy clinic where he goes weekly for a social skills/speech therapy group session. The mom of the other group member (M) needed to talk privately to the therapist, so Mr. L and I were sitting in the floor in the lobby playing a board game with M. Things were going well, I was feeling pretty good about my ability to facilitate their interaction and keep things running smoothly......then, another therapist walked in from outside along with her patient, a boy I'd not seen before.

Trust me when I say that this boy, approximately age 11 I'd guess, has autism. Pretty severely, based on what I saw. And something, I don't know what, was really upsetting and frustrating him. He was very reluctant to even come inside, and once he got in the door it just escalated. He didn't want to go into any therapy room, even the "gym" where they have the swings, balls, etc for sensory work. And he was making loud noises, VERY loud, and eventually screaming and it just sounded so painful and sad.

Well, the two boys in our group, Mr. L among them, were not happy about the noise the other boy was making. They were alternately covering their ears, making faces, or saying things like "why is he being so loud?", "what's going on with him?", "he needs to stop that", etc. I tried as much as I could to stop those kind of comments, and to tell them that everything was ok but that the boy just seemed to feel frustrated. Truthfully though, his screaming was pretty darn loud, ear-piercingly loud at times. And the therapist was trying hard, talking to him in a calming voice, reassuring him that they could go do things he liked (i.e. swing etc) but nothing was working.

The boy was about the same size as the therapist, meaning it's not like she could physically assist him into that room or do much to help when he throws himself onto the floor, which he did. Then he started hitting himself in the head, and she kept telling him "no, we don't do that, please stop" etc. I have no way to know any details about the boy's diagnosis or situation, but I think I know an ASD meltdown when I see one, and I was witnessing one today.

As the episode progressed, I started to think.....oh my goodness, what if that therapist is me in a couple of years? Listening to that child's screams was just heart-breaking to me. I felt my heart rate go up, and I felt at least some degree of the worry, frustration, anguish, fear and the myriad of other emotions that I bet that child's therapists and family members feel often. Because I am an ASD mom too, and have suffered through public meltdowns when nothing you do works and you feel so helpless and hopeless.

How will I manage this when I'm supposed to deal with it in a professional context? When it's someone else's child, and I don't know the little tricks and strategies that sometimes work to avert meltdowns for him or her. If just being a "fly on the wall" as I was today got my pulse racing and my heart aching, how will I function and keep it together as a therapist? I really was almost in tears today, watching and listening to that young man and that therapist. And so I started wondering whether I've made a terrible mistake in deciding to go down this career path......have I set myself up for failure, will it be too hard to maintain the professional demeanor and "detachment" because I won't just be a therapist but an ASD mom as well? Nothing I can do or would ever do will change that fact, nothing can take away what I've learned and felt in the past 7 years of parenting Mr. L. But will that very experience be my downfall and prevent me from success in Music Therapy? I thought it was going to be my big asset, and now I'm wondering if it's a liability instead.

20 years, really?

A certain realization kind of smacked me in the face a few days ago.......this month marks the 20th year since my graduation from high school. OMG, are you serious? I'm 37, turning 38 this summer, and it seems like those 20 years went by in about the time it takes you to snap your fingers.

When you see sitcom episodes about 20th high school reunions, the people have always seemed so.........so.........well, so old. And I don't feel like that, I really don't. It seems impossible that the Class of 1989 at BSHS can really have walked across that windy football field 20 years ago to receive our diplomas. I was 5th in my class, and back then (see, I do sound old) it was accepted practice for the 5th ranking graduate at our school to read the Benediction prayer at the close of the ceremony. My lovely flat-topped cap with its gold tassel nearly blew off quite a few times while I was speaking, and I had to hold on *tightly* to my note cards to keep from losing them.

And let's don't even talk about college graduation and the fact that it was 16 years ago.......seems equally unreal to me; it can't have been that long ago. I really don't feel like I'm all that much older than the students I teach, but in reality, I am. And the gray hairs I see in the mirror are proof. Plus, the other day one of my high school freshmen told me that her Mom is 41....ok, there is NO freakin way I can imagine myself with a 9th grader right now. 2nd grade is tough enough, thank you.

K and I went to our 10th reunions (he's the same age, went to our rival school across town!), and they were fine but I don't see a reason to go to the 20th. If we even have one, that is; I've heard nothing so far about anything being planned, and neither has he for his school. Plus, with the advent of Facebook and its "trickle up" effect, nearly all of the people I might be interested to see and catch up with at a reunion are now my FB friends and I can "see" them and talk to them whenever I want. K's theory is that Facebook will doom many high school reunions.....no one will choose to go because there's really no need.

So anyway, Happy 20th to all of you Class of '89 kids out there, from my school and everywhere else.......and just for fun, take a look at your old yearbooks and get a good laugh looking at our old clothes and hairstyles. ;)

the brilliance of the blogosphere

First of all, I love that word....."blogosphere". Just thought I'd share that. ;)

Second, I find myself so humbled by the great writing and brilliant insights of several of my blogging friends today, so I decided I'd defer to them and share their posts with you in case you hadn't seen them. These 3 are posts that really speak to me, about topics over which I am very passionate but maybe just don't express myself as wonderfully as these ladies have. Enjoy!

Kyra at Hopeful Parents wrote here about the so-called "neurodiversity" debate in the autism community. Are we trying to "cure" autism, can it even be cured? Or are we, as the ASD parents, supposed to be embracing the autism because it's who our children are and can never be changed?

Random Ramblings of a Mom has a recent post that's just so incredibly applicable to my world........you'll see why.

I "found" Alexa (from FlotsamBlog) after hearing her read a blog post aloud on NPR one morning, and I'm so glad I did. Wonderful writer, wonderful lady with a beautiful baby girl and her very own angel in Heaven as well. Here she writes eloquently on another topic close to my heart, though it's one I don't speak of much nowadays, and many of you might not even have known it affected me at all......infertility. Thanks, Alexa, for putting into words what so many of us feel.

Hopefully I'll feel inspired to write something original of my own again asap.......that is, unless you're so in love with these other writers (like I am) that you don't want to hear little old me anymore!