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Nov 17, 2009

Fight For Preemies & Cherish The Babies We Have

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I remember sitting in my OB’s office during my third trimester, hearing the confirmation of news I already knew: Cordy was breech. The stubborn child’s head had been in my ribs for weeks, and at my urging the doctor performed an ultrasound to confirm that what was directly on the other side of my cervix wasn’t a skull with a large brain, but instead little girl parts with the occasional foot kicking me in the cervix.

Disappointment washed over me. My choices were slim: attempt a breech birth, although at that time her positioning made it extremely unlikely, try an external version (where they try to turn the baby) and risk a cord accident, or have a c-section, which carries risks we all know. I asked my doctor which option was the least risky for Cordy, and c-section seemed the best option at the time. The risks of major surgery were obviously higher for me, but it was an easy decision to make.

In the end, I got what I wanted: a healthy, full-term (nearly 39 week) baby. And I know that my struggles with facing a c-section were minor compared to some of the harder choices other parents have faced. Or those who had any possibility of choice taken away from them. I never had to face a pre-term delivery, wondering if my child would survive outside of my uterus, praying I could keep her in for just a few days longer to improve her chances. It makes fretting about a c-section minor in comparison.

My mother still keeps an image etched in her soul of a 32-week infant daughter, head full of dark hair, half of her face bruised from the traumatic delivery, too little to breathe on her own. There were no photos taken of her, but my mom can still remember her features clearly. She had only enough time to give her a quick kiss before the baby girl was transported to the NICU, where she died just days later.

My mom is an incredibly strong woman, but I know she still mourns the daughter she lost. The details she can recall of those heartbreaking moments are vivid, moments that happened 34 years ago. I’ve asked her before if she’s angry with what happened, upset that she was forced to go through so much pain only to bury a child she barely had the chance to meet. She responded with a reminder that if Krista didn’t die, I wouldn’t have been born, and in the end she’s glad she has me. (Krista was born at the end of July. I was born in mid-June the next year. Roughly 11 months.) I don’t know if that answer fully explains her feelings, but then again I think a lot of her feelings about those days are buried deep.

Today is Prematurity Awareness Day, sponsored by the March of Dimes. The March of Dimes recently released their report card for the nation, and I’m sad to say that the United States received a D. What’s worse, Ohio (along with several other states) received an F, with a preterm birth rate of 13.2%.

While there will always be some elements out of our control, it is possible to bring down this number: better health care (and insurance) so all women have equal access to prenatal care, education about risk factors for premature birth, and a push for doctors to deny elective inductions before 39 weeks would be a great start.

In an ideal world, NICUs would be smaller and needed far less often, and nearly every child would be born without any need for life support. Until then, we can only raise awareness of our country’s high rate of prematurity and support research efforts to improve prematurity outcomes and reduce the number of babies born too early.

Today I honor the memory of a baby born too soon, and I celebrate the lives of two healthy little girls who have made me the mother I am. Hundreds of bloggers are writing about a baby dear to them today, too. Will you?

Filed Under: big issues ·


Nov 16, 2009

Firsts – The Tooth Fairy

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I remember when I lost my first tooth. I was five years old, and I didn’t even know it was loose. I went to my babysitter’s house after kindergarten that day, just like any other day, and was greeted with a typical peanut butter and sugar sandwich. (Seriously, she sprinkled sugar on it. She was an old woman – let’s not question her grasp of nutrition, OK?)

The sandwich was quickly devoured and my kool-aid was gulped down so I could watch afternoon cartoons. I must have laughed at something on TV, because my babysitter gave me a strange look and said, “Honey, open your mouth.”

I had no idea why she was asking me to do something so odd, but I complied. “Did you lose a tooth yesterday?” she asked.

“No. They were all there when I brushed my teeth this morning,” I replied.

“Go look in the mirror, sweetie,” she instructed me, grinning. I’m sure I huffed as I got off the floor to go to the bathroom, irritated at leaving my beloved cartoons behind. I’m sure I thought she was nuts, since I had no dramatic moment of feeling a tooth fall out. Shouldn’t I feel a tooth dislodge?

Standing on my tip-toes, I peered across the sink into the old, cracked mirror and slowly opened my mouth. There, in the center of my bottom row of perfectly aligned teeth, was a dark gap where a little pearly white tooth should be.

I was stunned, and my heart started to pound hard. Where was my tooth? When did it disappear? And most importantly, WHAT WAS I GOING TO TELL THE TOOTH FAIRY?

I don’t remember what exactly happened after that. We figured out that I must have swallowed my tooth when I ate my after-school snack. I vaguely remember a mix of glee and horror, happy to have hurdled across another milestone in the journey of growing up, but worried that swallowing a tooth could somehow hurt me, and frantic that I was going to miss out on a payday from the tooth fairy.

It wasn’t the ideal First Lost Tooth experience, although I believe the tooth fairy was understanding of my situation. (And for the record, my mom was NOT sympathetic enough to look for when the tooth came out the other end. My first lost tooth was never recovered, and I can’t say I blame her for that.)

But I’m happy to say that Cordy did not share my first lost tooth experience. When she had dental surgery this summer the dentist warned us that, based on the x-rays, she was likely to lose a few baby teeth in the next year. The roots were shortening and her permanent teeth were beginning to form underneath.

About two weeks ago I noticed one of her teeth on the bottom looked out of line with the rest. When I wiggled it, I discovered that it was completely free in the back and just hanging by a tiny piece in the front. I expected a tooth fairy visit in the next day or two, but that tooth kept holding on.

Then the other night, while eating a chip, Cordy paused with a confused look on her face, reached into her mouth, and then handed me her tooth, shouting, “Mommy, I lost my tooth!” Apparently my child chews her food better that I did at five years old.

She put the tooth into a pouch, placed it under her pillow, and the tooth fairy replaced the tooth in the pouch with several coins for her piggy bank, along with two activity books. Cordy was thrilled.

Of course, further examination of her mouth reveals that the tooth fairy better not go too far away. Her permanent tooth is already coming in to that spot, and it’s larger than the space available, now pushing out the tooth next to it.

What is the going rate for a tooth now, anyway? I’m hoping she doesn’t ask at school. And if her permanent teeth are anything like mine were, we’ll need to start saving for orthodontia now.

Filed Under: Cordy, growing up, memories ·


Nov 14, 2009

Guinea Pig for Hope

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Wow, I’ve been away for a week, eh? That was unintentional. This past week I completed my orientation at work and began my time on night shift, working 7pm-7am. So far? I’m in a fog. My brain and biorhythms can’t tell if I should be awake or not at the moment, leaving me staring at the wall wondering if I’m really awake or just dreaming I am. I’m told it gets easier, so we’ll all cross our fingers and hope that’s true.

Even my days off haven’t been very restful. Something I haven’t shared with everyone yet is that back in September we enrolled Cordy in a clinical drug trial at OSU’s Nisonger Center (University Center for Excellence in Developmental Disabilities). The Nisonger Center is an incredible resource for parents of children with autism, and I’ve been watching their research studies for a couple of years now.

I’ve considered clinical research studies for Cordy in the past, but never requested more information because either 1. Cordy was too young for the study, or 2. I didn’t feel comfortable putting her in anything I considered risky. Unless the risks are slight, I’m not willing to let Cordy be a guinea pig, even if that research could be the key to unlocking new treatment options for autism spectrum disorders.

However, this particular clinical trial caught my eye. It’s a study of an ADD medication for children with autism who also have ADD symptoms of hyperactivity and/or inattentiveness. The drug is already in use for children with ADD, the amount given in the study does not exceed recommended dosing guidelines already in place, and this drug has a very small list of rare, severe reactions, all of which are completely reversible by stopping the medication. Feeling like it was a relatively safe trial, I called and signed her up.

The first few meetings involved several screenings. Even though she already has a diagnosis, they had to determine for themselves that she really is on the spectrum with ADD-symptoms. By the end of those tests, the doctor in charge determined she was a perfect fit for the study. Then came all of the medical tests to be certain she has no underlying health problems. A blood draw was required for that, and I won’t even go into the horrific details of how that went. Let’s just say that they got to see Cordy’s full meltdown, and again I’d like to apologize to the nurse who took the flying shoe to her head.

One of the more pleasant parts of the screening.

Now we go in once a week for a check-up. These meetings take about two hours, where I spend most of my time filling out paperwork and answering questions about her behavior for the past week. Cordy, on the other hand, spends about 15 minutes getting a quick exam by the staff (height, weight, B/P, etc.) and the remainder of her time charming everyone into letting her do whatever she wants. They let her watch videos, give her snacks (they keep a snack drawer stocked with organic snacks!), surround her with toys and paper and markers, and the student workers are thrilled to play with her. One in particular has said he wants to be there on the days when she’s there, because he likes hanging out with her. All together now: awwwwww!

At the end of the meeting, I get another week’s worth of medication for Cordy (they’re slowly increasing her dosage) and Cordy, already stuffed from Annie’s bunny fruit snacks, gets to choose a prize from the prize box. As you can guess, she now loves going to Nisonger, calling it her “office” and saying she “has to go to work.”

We’re only on week four of the ten week study, and we don’t know if we have the actual medication or the placebo. The medication also takes 4-6 weeks to build up in the system. The good news is that we’ve yet to see any of the possible side effects listed for the medication. So we could have the placebo. However, in the past week we’ve also noticed that Cordy’s repetitive motions (running “laps”, flapping, awkward limb movements, etc.) have dropped off dramatically. So we could have the actual medication. Of course, it’s supposed to help with ADD symptoms, not repetitive motions and flapping. So we could have the placebo. And at this point my head starts to spin as I think: And you must have suspected I would have known the powder’s origin, so I can clearly not choose the wine in front of me…

So whether we have the real medication or not, we’re not seeing a lot of results yet. But that doesn’t mean they won’t come. And at the end of the ten week study, we have the option of entering an open study where we can try the actual medication if we had the placebo.

I never thought I’d be a parent who would medicate her child. But with kindergarten looming in the distance, Cordy’s lack of attention and focus is a concern. This is her last year of being in a special-needs classroom. Next year it’s the real deal – mainstreamed in a class of typical kids. I worry she’ll be eaten alive by kids who will pick up on her differences. I worry she’ll have trouble sitting still. And most of all, I worry she will be left behind academically, as the quiet girl who doesn’t cause any trouble, but also doesn’t have the focus or drive to apply herself to her lessons.

She’s generally not disruptive in the classroom, but her quiet zoning out could easily result in her being lost in the crowd. I can see her being the sweet child in the back of the class, distracted by her own mind and all of the sensory onslaught around her and then struggling when it’s time to prove she learned anything at all.

Right now she gets personalized attention in her special needs pre-K, but next year she’ll be lucky to share an aide in a classroom of 20+ kids. At this point we can’t even guarantee a shared aide. While I plan to work with her at home as much as possible, I can’t be in the classroom with her, meaning I’ll exhaust every option to give her the best chance of success at school.

I have no idea if this trial will work or not. And if it doesn’t, I’m back to searching for more options. But right now it’s buying me just a bit of hope that we’re moving in the right direction a little faster.

Filed Under: Autism, Cordy, school ·


Nov 8, 2009

Drowning in Paper

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It’s a sad realization about the state of my living room that I can remove an entire garbage bag stuffed full of papers, magazines, catalogs, etc. for recycling, then look at the room and realize I can’t even see a difference.

Most of those papers? Stuff sent home by the schools. Seems like Cordy’s backpack has a handful of papers stuffed into it each day, most of which is not-all-that relevant and could have been consolidated into fewer papers by using a font that wasn’t so big my 89-year-old grandmother could read it without her glasses. Or, you know, that new little technology we have called e-mail.

Let’s not forget all of the art projects that come home, too. Disclaimer: I love my children and cherish their creative spirits. With that said, I no longer feel guilty about throwing out some of those masterpieces. My mom has already given me grief for not saving every piece of art (apparently she has boxes of mine somewhere that I’m sure she’s just waiting to dump on me whenever I feel like I’ve finally organized my house) but let me give one example of what I’m up against.

Cordy has seven sketch books from when she was three years old, all completely filled with drawings. Seven. And due to her affection for routine and repetition, they’re all filled with THE SAME IMAGE ON EACH PAGE. Do we really need seven books filled with the same drawing, only in different colors? Will we really look back, years from now, and try to gain artistic meaning from why one drawing had more spikey hair while the other had less angles and more curves for the hair? And that’s just from three years old.

And despite my Inbox being stuffed with online coupons and special sale offers, I still get a tremendous amount of catalogs. Of course, the holidays are nearly here, so I fully expect my daily catalog quota to triple in the next few weeks. Most go directly into the recycling before they ever touch a countertop, along with the regular credit card offers and other junk mail that keeps the USPS from raising our stamp prices sooner. (Seriously, I’d rant about all of the wasted paper for junk mail, but I am glad it keeps our mailman in a job.)

I’ve tried organizing everything, but it never lasts long. My organizers are quickly filled up and new folders are needed for things I never thought of. Maybe I should be asking for a giant corporate filing cabinet for Christmas? But where would I put it?

It’s 2009, people. Why is there still so much paper cluttering up our lives? Where are our digital classrooms? Where are the paperless offices? And a little off topic: where is my flying car?

Filed Under: daily life, domestic zero ·


Nov 3, 2009

Perspective

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When I was a teen, growing up in a small Ohio town that I considered (back then) to be backwards, small-minded, and too confining for me, I dreamed of getting out of there and living a grand life. I had no idea what I wanted to do, but whatever it was, it was going to be exciting, it was going to open my world to new ideas and cultures, and I would never look back. Life would be one new experience after another.

It was also during that time in my life that I never planned to grow old. (I also was in my “Kids? NEVER!” phase of life.) No, I didn’t mean I was going to find some fountain of youth – I actually thought that I would die before I ever had the chance to crack a wrinkle on my face. Growing old seemed uninteresting, and losing my vitality and my ability to keep up with the world was my greatest fear. Instead, going out in a blaze of glory while I was still young was far more appealing.

Let’s not forget that, as a teen, 30 seemed old.

After I graduated high school, I didn’t have quite the exciting life I dreamed up in my room at night. But I did do some cool things in my late teens and early 20’s. I went to a university where I met people who were vastly different than those from my small hometown, and I did open my mind to new thoughts and ideas. I dyed my hair every shade of red imaginable. I spent a summer in England, almost refusing to go back home at the end.

I drove really, really fast. I conquered my fear of heights and did a bungee cord free-fall. I became a modern-day pseudo-hippie and joined the cast of a renaissance festival for nearly 10 years. I still had the motto that life was short and I wasn’t planning on seeing old age.

And then I found a man I loved, and we married and had children.

The teen me never expected that part.

Now I’m in my thirties, with two young daughters, and I can’t imagine that life I dreamed up when I was younger. I’m more cautious now. I still drive fast, but only a little over the speed limit, and less so when the kids are in the car. I care about things like nutrition and I see my doctor regularly. I stopped dying my hair when I was pregnant and haven’t really gone back since. Surprisingly, I think I like the somewhat-routine life I’ve shaped in Columbus, Ohio, even if it is a little boring at times.

But I’m still struggling with the idea of aging. Part of the problem is I still feel like a teen at times. I’m still (mostly) in touch with pop culture: I listen to pop music, I love The Vampire Diaries, and I think I’m a pretty good texter. When someone looks to me as a voice of experience, I’m always surprised because I feel like I’m still the inexperienced one in all things. It amazes me to realize that teens now are closer to Cordy in age than they are to me. High school was half a lifetime ago. Wow. It doesn’t seem that long. I can’t really be in my thirties, can I?

As for dying young – are you kidding me? I have a family who needs me! I have two little girls to raise! At this point I’m trying to live to at least 100, if not 150!

This morning I opened a box from the mail and found a sample of anti-aging face cream. As I examined my face in the mirror, I knew I’d passed the imaginary “old” line that I drew in the sands of time as a teen. I have small wrinkles around my eyes now, probably from excessive laughing and never wearing my sunglasses. My skin is beginning to sag at my jawline, excess from my years of never turning down a pizza party or going to get ice cream with friends. My tweezers can no longer fight back the white hairs sprouting from my temples. (OK, those I blame entirely on my children.) And let’s not forget those damn dark hairs I have to pluck from my chin and neck – where did those even COME FROM?

Truth is, I am the person anti-aging creams are aimed at. Not my grandmother, or my mom – ME. And it means I’m growing old. Those who know me in person know I’m not exactly vain – I’m about as low-maintenance as they come. I rarely wear make-up and I don’t spend a lot of time on my appearance. However, I now understand why these creams and potions are so popular. I don’t want to wrinkle, I don’t want to slow down, but most of all, I don’t want to acknowledge in any way that I’m creeping ever closer to old age and the end of my days. (Even if that time is a LONG, LONG, LONG way away.)

While I dislike getting older, the thought of not being here at all scares me far more. At this point in my life, I’ll do whatever it takes to live longer and be healthy enough to be here for my family. Forget exciting and adventurous – watching my children grow and learn is far more fulfilling. I’ll take reading books to my kids over backpacking in the Scottish highlands (nearly) any day now. I expect to be there for them through all of the challenges life throws their way. My family has given me an entirely new direction in my life.

I’m glad the life plans I drew up as a teen never materialized. I like being a mom and I appreciate my normal, often-not-exciting life. And while I may not like the wrinkles and what they remind me of, there will always be anti-wrinkle cream for that, right?

Edited to add: Now that I’ve written about how I always feel like the inexperienced one, David Wescott tries to prove me wrong honors me by naming me as one of his female role models. Considering the amazing women I’m listed with, I can only say thank you and I hope I’ll continue to prove that I deserve to be among that group.

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Filed Under: me me me, memories, more than parents ·