I remember as a child, having a very clean joy. I was full of anticipation of presents and cookies and days off from school. In Texas, we never knew if it would be cold, or if we’d be wearing short sleeves, and I only recall one white Christmas in all those years living at home. In fact, I was lucky. Because my parents were young, my grandparents young, I didn’t lose anyone close to me until I was an adult, the biggest loss of all.

But the Christmas prior to the bad year was not too happy either. We’d been trying to get pregnant since March. Babies were popping up all around us. My parents finally knew not to ask anymore, realizing something was awry.

There is a picture of my husband and me that year, by the tree. I’m wearing a shiny gray outfit, my hair up in a bun, and I look perfectly miserable, annoyed that someone is taking my picture. I’m devastated to be around family, but grateful that babies are not appearing yet. Tucked just a room away, within the drawers of my nightstand, were sheafs of basal body temperatures. I was trained to recognize ovulation and pregnancy, but only years later, when I became much better at reading the charts, would I see what was happening. Early miscarriage after early miscarriage. Cycles that I thought were wildly erratic, going from 25 days to 45 days, were not normal cycles at all, but low progesterone cycles, failed implantations, and early losses that were not even picked up on the tests of those days, where 100 was the minimum hormone threshold for a positive (today it is 20.)

What I didn’t know as I took that frowning picture was that I was indeed pregnant. And that by some miracle, it would stick for twenty long weeks. But only twenty weeks. And by the next Christmas a new ornament would appear on my tree. Casey’s.

This year, Elizabeth found Casey’s ornament first. She tugged it out, puzzled over the name for a second, then realized whose it was with an elongated, “Ohhhhhh.”

She brought the little plastic soldier bear to me. “I think you should put this one on,” she said.

I could not have pictured this moment that Christmas, that one day one of my children would hand me the ornament bearing the other’s name. I just knew then that I couldn’t carry babies, and that yet another one in my belly that year, the second or sixth, however you might count them, was in danger. My high-risk doctor was hopeful that I would make it to 25 weeks and give the new baby a chance of surviving. But that Christmas was strained and frightening, and the holiday never returned to that purity of joy I had before my twenties.

Now, with two lovely daughters and so much to celebrate, I make sure their Christmases are as lively and pure as my own (although this year it looks like we might be wearing SHORTS!) Elizabeth hands me an ornament, but the pain doesn’t stick to her. And once I put it on the tree, and admire it for a moment, I also return to our task, decorating and cooking and wrapping, for a holiday that can be as merry and bright as I am able.

Last year the librarians at my daughter’s elementary school discovered I knew Photoshop.

This led to many projects, and this last one was so involved that we decided we would share the results with the entire library and teaching community.

What they needed: Modern, fresh-looking, easy-to-read posters on the Dewey Decimal system geared toward elementary school students.

So I designed 10 posters using legal, royalty-free photography and the terms that the librarians decided best fit the needs of the kinder-5th grade readers who would use them as reference.

They are PDFs designed on an 8 1/2 x 11 page so they are easy to print small and evaulate. We ran ours at 18×24. We got coupons online for Office Depot and ran the whole set of 10 huge color posters on glossy heavy stock for about $100 then laminated them on the school machine.

The easiest way to download the whole set of 10 is to click the link below and “save as” to your computer:

http://www.deannaroy.com/dewey-posters-by-deanna-roy.zip

That zip file includes all 10 high-res PDFs.

But here is a chart of what the 10 posters look like.

The posters are free to use, but naturally illegal to sell! Have fun!

This time, we were at Target shopping for school supplies.

Elizabeth, the 9-year-old, wanted anything pink and got a new backpack and matching lunch box.

Emily, the 12-year-old, decided her old lunch box and backpack were perfectly fine and opted not to buy anything.

As we left, Elizabeth spotted some totally blinged-out scissors covered in colored rhinestones.

And thus, our sentences.

Emily: “School supplies aren’t supposed to be sparkly. You have to use them!”

Elizabeth: “Ooooh! They match my bag!”

Just like with the Coach Bag Incident, in two sentences, they displayed their unique worldviews.

This time, it involved Silly Bandz.

Silly Bandz are little rubber-band bracelets that have a shape when not being worn. Elizabeth had been asking for some, as trading them at school was the newest biggest fad, and she’s all over new big fads.

I picked up a package of 25 or so bands while out shopping and presented them to the girls when they got home from school. Emily picked out one of each color, and Elizabeth took the rest of the bag for trading.

Later that evening, I got an email from the school district saying that Silly Bandz were banned due to “overwhelming distractions” with kids trading them.

The next morning, as we got ready for school, I let the girls know they couldn’t wear the bands anymore. Emily left her pile of Silly Bandz on the dining room table.

Elizabeth slid dozens of the colored bracelets onto her wrist.

And thus, our two sentences.

Emily said, “Elizabeth, you’ll get in trouble!”

Elizabeth hid her hand behind her back. “Only if I get caught!”

(Which is the girl most like her mother?)

This time she said, “Don’t forget Irma.” Our good friends lost their two-day-old newborn yesterday.

“And God bless Irma,” I said.

“And her baby,” she added.

“And her baby.”

She pulled her pink kitty pillow closer. “Is Irma’s baby in heaven yet?”

I nodded. “He died last night, about the time you went to bed.”

“I know that,” she said. “But is he in heaven yet?”

“He is,” I answered. “How long do you think it takes?”

“About a week.”

I tucked her two favorite blankets around her. “So, where do you go for that week?”

She thought for a moment. “The waiting room. Like at the doctor.”

“I see.”

“Do I have to go back to the doctor?”

“Yes.” While I was at the hospital yesterday, Elizabeth had another seizure at school, this one much worse, adding four minutes of unresponsiveness to the old pattern of dizziness and inability to walk. She’d always been lucid through them before.

“Oh brother.” She sighed and closed her eyes.

She’s tired now, earlier than usual. We had to increase her medicines yet again and now must monitor her sleeping patterns in case the bigger doses make her too sluggish. But still, we have to increase the meds once more next week. Her body may no longer be responding to it.

I have known helplessness as long as I’ve known motherhood, my own first baby dying when I was 20 weeks pregnant. Then losing Elizabeth’s twin, a trauma that may have caused her brain damage.

How can we feel so desperate to protect our babies and yet be able to do so little?

She opened her eyes one more time. “It really doesn’t take a week?”

“Nope. Happens right away.”

“So Irma’s baby is already there?”

“Yep.”

“Can he see us?”

“Maybe.”

“Can I tell him to take care of Finn?” Elizabeth’s fish has been sick for several weeks. “Fish do go to heaven, right?”

“I think so.”

“Do they have to wait a week?”

“Nope. Not fish either.”

She yawned and settled back into her pillow. “Good. I wouldn’t want to wait that long.”

Neither would I. And yet, we wait our lifetimes. Hopefully long ones. And hopefully ones where joy comes more often than loss, and fear is pushed away by faith.

Today we were shopping for back-to-school clothes and backpacks. In one department store, we spotted an eye-catching line of Coach purses from their Poppy line. (Note: it’s their DISCOUNT line, in honor of the recession.)

We paused to look. The girls (Emily is 11 and practical; Elizabeth is 8 and a bling-addict) puzzled over the white security ties keeping the bags firmly tethered to the display.

“Those are pretty,” I said, pondering the fiscal responsibility of such a bag, but secretly wanting one.

We flipped over the price tag. $398.

“That’s way too much for a purse!” Emily exclaimed.

Elizabeth’s eyes lit up. “Let’s get it!”

My poppies, in a nutshell.

When I was in second grade, our school yard had one of those old-fashioned merry-go-rounds, a metal circle with handle bars. You ran alongside it, and when you hit the perfect speed, you’d jump up and hang on.

Most playgrounds don’t have these anymore. That year, I was idly sitting on it during recess, reading a book. The football team came out to practice on the field adjacent to the playground. They decided I looked like I needed a little fun, so they began spinning the merry-go-round. Naturally, with six athletic teenage boys putting their muscle into it, I spun very fast. My book went flying off the bumpy metal wheel as I hung on to the handle, bracing my feet against the opposite bars in hopes of being able to ride it out.

But I couldn’t. Even though the boys stopped running and backed away, I couldn’t hold tight enough and flew off, landing in the gravel.

It could have been worse. Nothing was broken. I skinned one side of my leg and arm, a mass of blood, dirt, and gravel. The boys were terribly sorry and tried to hand me my book. I got tons of attention I neither needed or wanted. Shortly after, this merry-go-round was removed. I was blamed, and this ushered in a rather unhappy period of that year.

The way our world has spun since Elizabeth had to go on full-time anti-seizure mediation has been just as sickening, and I definitely feel the fear of a terrible crunch at the end. In this week’s whirl, we got our three-month supply of medicine only to open the box and discover the generic instead of the brand name.

Our neurologist had absolutely insisted we not do this particular medicine in generic, as we had done for the first month. The FDA only requires a generic dosage be within 80-125% of the correct amount of the brand. For a tiny girl like Elizabeth, getting 80% of the lowest dosage that she’s already on, since she is so small, means she may get seizures. Which means we’ll think it’s not working even if it might be. And of course, that she might have something happen to her, the always-fear when seizures are present for anyone.

To add to the fun, the suspension that the generic drug sits in as a liquid (she’s too small for any pill dosage) is seriously inferior to the brand name, making it appear like sour milk. We are quite certain that the cloudy liquid and the thick white chunks are not the same dosage, so we had to be super-vigilant about shaking it very very well. And even then, it seems like the bottom of the bottle is not the same color as the top.

We confirmed all this with our pediatrician yesterday. I ran to our local Randall’s, which had filled our interim prescription correctly with the brand name, and they delivered the bad news: since we had three months of generic from the mail order, the insurance wouldn’t cover it. We’d have to pay $186 a month for three months to get the brand name.

Upon calling the neurologist, we learned she had forgotten to uncheck the generic equivalency box. Her mistake, they were sorry. $600 sorry?

In more urgent news, all this delay meant we were OUT of medicine. Tick tock. This is an uncommon drug as a liquid and not stocked in most pharmacies.

Let me tell you, if you are ever in any sort of medical bind, I hope you get a pharmacist assistant like Cecilla at our local Randall’s, who, despite the fact the error was the doctor’s, and despite the fact that a mail order place got us the wrong medicine and it wasn’t anything to do with her, spent hours on the phone, negotiating with the insurance, putting in a medical emergency override, and getting us the rare brand name drug for $25, all within 16 hours.

I know most of us are at the mercy of doctors, insurance companies, and drug policies. But sometimes, people in the system do stand up for you. And sometimes, it’s not even the people you think it will be.

Elizabeth has gone 8 weeks without a seizure. We hope that means the drug, our second one to try, is working. She’s been to Magic Camp, finished her Pokemon game, and kept her nose in Gail Carson Levine books all summer. She just finished second grade. Our merry-go-round has been about as traumatic as that ride I took at her age, and the consequences have been, like mine, minor compared to what they could be. We see parents of children with heartbreaking problems and count our blessings. Certainly right up there on that list is Cecilla, who helped make sure that as the world started spinning out of our control, that we got the care we needed.

Take Cheez Whiz. It is not cheese. If it were cheese, the package would just say “cheese.” At most, “cheddar cheese.” Or “American cheese.”

But no. Cheez Whiz, in addition to its aberrant spelling, also packs on the modifiers. “Processed cheese food product.”  There’s no hiding the fact that it’s made of chemicals in no way resembling the version solidified from the bodily fluids of a cow.

I’ve found, in this year, two months, and twelve days since Elizabeth’s first seizure, that I’ve been guilty of modifiers. “Seizure disorder.” “Seizure-like event.”

Tiptoeing, as it were, around the thing I’d rather it not be. Seizures. Epilepsy. A life-long battle. No cure, in our case. Hard to treat.

The meds aren’t working. Elizabeth had another big one today. She was hysterical, the Keppra doing it’s job of scrambling her emotions, making her react strongly and violently to everyday events, so a big one like this sent her over the edge. Sobbing, gulping, having trouble breathing because she’s BEEN TAKING THE MEDICINE EVEN THOUGH IT’S YUCKY AND WHY IS THIS HAPPENING ANYWAY?”

We had tried easing the misery of the foul-tasting liquid. First with the extend-tabs, which were too big, and she choked. Then we tried to get the crushable pills, but the penalty for the doctor writing the Rx “dispense as written” made them $461. How are people supposed to do that? So we’ve continued the liquid, Elizabeth cheerful about it, finding ways to squirt it in the pocket of her cheek to minimize the taste.

But tonight she couldn’t walk, couldn’t get off the bed, too dizzy to move, completely distraught until she started throwing up despite the anti-nausea meds. All the side effects and none of the benefits.

“Why didn’t it work?” she asked between big heaving gulps of air.

I couldn’t tell her. I had no answers.

I can pile on the modifiers, try to change the way it sounds, put a spin on it. But that won’t change anything. A seven-year-old is afraid. And we are too.

A lot of you know it’s been a rough year for Elizabeth, as I have posted about it before. In the past few weeks, more has happened. We did get in with the neurologist. They did take the dizzy-falling down-throwing up-migraine episodes seriously (finally!)

We’ve been having one every few weeks since November. The last one was the day of Elizabeth’s second-grade Valentine Party, but she forced herself to feel better despite being carried off the playground (our new migraine drug Maxalt helped tremendously) and attended the party. That girl is motivated by cupcakes, no doubt.

The doctor ordered a weekend-long EEG test. Elizabeth would get wired on a Friday and carry the machine around through Sunday. In the same manner that we had trouble getting appointments, we had a lot of trouble getting this scheduled. After five weeks of runaround, I finally called and said, “You have to cancel our appointment with the doctor as the test she ordered wasn’t done since you never scheduled it.” This lit a fire under them, but unfortunately, the only weekend left was during our trip to see my family and my 40th birthday.

So we had to cancel the trip, and I spent my 40th watching Elizabeth get attached to the electrodes. We did our best to have a good day.

One thing we discovered, however, is how ill prepared we were for this test. We looked for pictures of the machine so we could show Elizabeth how big or small it would be, and found very little, just one manufacturer picture that was obviously just an ad. We just happened to read a reminder on some other doctor’s site to wear a button-down shirt or you’d be stuck in the same clothes for three days. Gah! Why weren’t they telling us all this?

So in the end, I decided to use a Canon 7D to take photographs and HD video to document the whole experience. My blog’s Google ranking is pretty good, so hopefully when other parents start searching for information, they will find this and be able to show their children what to expect and feel less anxious.

I’m posting it both from Vimeo and YouTube as the HD can hitch a little for those of  you without great connections and video cards that can handle it. I’ll post some stills here too, and keyword them so they will be easy to find.

Pediatric Ambulatory EEG for Seizure Disorders and Epilepsy in Children from Deanna Roy on Vimeo.

This video shows in detail the procedure for a 24-hour ambulatory EEG test given over three days for Elizabeth, who had her first seizure at age six.

Elizabeth started her medicine today. We said NO to Depakote and Topamax. We didn’t feel the side effects were worth the risk for Elizabeth, whose seizures are fairly rare and not as extreme as other children’s might be. We settled on Keppra, and can only hope for the best. I’ll post more about it as we watch Elizabeth for potential behavioral changes, but I can report that it tastes AWFUL. We have the liquid, which is allegedly grape, even though it tastes more like asphalt than any fruit. She’s practicing swallowing tiny candies so that we can hopefully switch to a pill when she’s worked up to the full dose.

We can only pray she’ll do well and stay caught up in school.

Ms. Kim wraps the gauze to protect the electrode set up.

Elizabeth plays her favorite video game during her EEG

Elizabeth with her gear for her three-day home EEG

For the past two days, we’ve been snagged in a sea of health care red tape. Only one pediatric neurology group exists in town, so we have to play by their rules. They won’t see her until March, and that’s only if they’re willing to make an appointment, as right now our pediatrician hasn’t jumped through the proper hoops.

Last February, when Elizabeth had a grand mal, followed by a day of dizziness, inability to sit up, stand, or walk, we ended up going back to the hospital when we could have simply done outpatient testing at one-tenth of the cost. But Circus Oz came to see the patients, so if you ask Eliza, she would tell you, “IT WAS TOTALLY WORTH IT!” Missing school for a week? Not so much.

She’s back at school today despite three episodes that can’t be classified for certain without tests. Her pediatrician thinks they could be halo-vomit-migraine patterns, but they could also be seizures with traditional post-seizure side effects. Meanwhile, Elizabeth goes merrily on her way, choosing between braids or headbands, hoping her heart shirt matches her sparkly jeans, and wishing her math homework wasn’t quite so hard. She has trouble concentrating at times and deals with pains, both real and phantom, most every evening and night. She sleeps in troubled bouts, and if she gets too stressed or deals with too much static in her brain, will simply fall asleep wherever she is (sometimes even on the bottom step of the staircase if climbing them seems too much trouble.)

Specialists are hard to come by, and it seems more would-be doctors are shying away from fields that require too much bureaucracy, or ones where it can be hard to keep the clinic in the black, with all the staff required to keep the forms moving. And at times like this, when we’re unable to treat a second-grader who might embarrass herself in front of her class at any moment by falling down and throwing up, it’s frustrating to feel that the system doesn’t work even for upper middle class families with good health insurance. I can’t imagine how much harder it would be if we were poor, although I guess we’d just park ourselves at the hospital and let the bills fall where they may.

She’ll hop off the bus shortly, thrilled to have seen her friends, bummed that she has to do homework again after two weeks off, and hopefully without any trouble this day. She doesn’t always realize when she’s having illness-related problems, when one day she can add triple digits and laugh about how easy it is, and the next will lie on the floor and cry over seven-plus-eight. That’s the job of those of us around her, to keep her calm and safe and hopefully get answers when answers can be determined, and solutions when solutions can be found.

I’m not sure what we’re owed from our health care system or what we should even expect. Maybe I want too much. But to see a doctor, one who has trained and has as much information as anyone might, seems the most basic of services. So today, that is what I fight for: an appointment. And let the answers fall where they may.