Elizabeth

To the Good People on the Arbor Trails Running Path

I didn’t mean to make you uncomfortable during your exercise regimen, really.

See, I got up today and things were so totally normal. 6:20 alarm. Made lunches for my two girls. Set out outfits. Got Child 2 to show choir rehearsal. Got Child 1 to the bus. Tracked down missing item for talent show and took it up to school.

I mean, all was well, right? I arrived at the running path and set off like normal.

Except that at some point, 2 miles in, everything went wrong. One minute I’m zipping along, darting around muddy spots, and the next minute I’m bent over, sobbing my fool head off.

People of the Trail, I know this was disconcerting. I beelined for a bench, a little off to one side. I meant to sit ON the bench, really, but missed and ended up sitting in the mud with my head in my arms.

I’m sorry that it might have caused you concern.

See, today is a little harder than I’m letting on. Today Child 2 gets yanked from school, taken to the hospital, and wired up again. She is taking this too well, with a little too much shrug in her shoulders, and I hate that her sunny little life has gone so gray this year. Anti-seizure meds not working? Shrug. Failing school? Shrug. Hates her practical hair cut for the wires? Shrug. Missing the yearbook staff party, the culmination of a year’s work? Shrug.

eliza-bucketMaybe I was crying for her, for the kid who didn’t really deserve all this disaster, who got a “bucket” from her fifth-grade class yesterday that was full of “You’re nice and kind to EVERYONE” and “Great smile, britens my day.”

But among the people trying to keep their pace up and avoid the crazy crying woman, there was that man, the one I’ve seen on the trail every day, and worried over actually. Seventy, easy, wearing a long-sleeved shirt and baggy khakis with a funny old-timey cap pulled low over his dark eyes. His sun-worn brown face always shifts into a big bright smile when we pass each other, his shabby Hush Puppy loafers shuffling in front of the other. “Buenos dias,” he always says with a nod. “Good morning,” I answer.

web-rose-on-benchHe thinks I didn’t know who he was when he walked up, but I knew his shoes, the pants, the shuffled step. I waited until he was gone and pulled myself together. He’d left a rose on the wet bench. When I looked either way on the trail, I didn’t see him.

I do what we do in these moments, pulled myself up and brushed dirt and wet mulch from my legs. I recognized the rose from the bushes in front of the bank, plucked, no doubt, but I had a feeling where this guy comes from, forgiveness is stored in buckets by the door.

Maybe you don’t believe in guardian angels, but I’m pretty sure I do now. Whether they are celestial beings or real people, doesn’t matter, but I know they are out there. And those of us going through whatever we are forced to endure, sometimes it just takes looking to see them, and sometimes it just takes having faith that they are there.

When one purple scarf makes a difference to a girl with epilepsy

Elizabeth went to the neurologist office this week so we could sort out the new symptoms of her medication (Lamictal) and find some strategies to manage the changes in her life.

While we were there, the Nurse Practicioner came in with several hand-made scarves in varying shades of purple, the color chosen for epilepsy awareness. “Pick one,” she said.

Elizabeth was shy about it, but eventually selected a simple solid purple scarf with an intricate weave. On it was a round sticker that read “The Purple Stitch Project.”

The meeting went on, about her sudden weight loss (10% of her body weight in three months), her sudden downturn in school (we sign failing papers almost daily), and her overall feeling of tiredness and well, just blues.

We’re not giving up on the medicine, as it’s the last one they’ll give us. We’ve been through others, and while sometimes they work for a while, the seizures return, often more frightening than the last. Elizabeth, now 10, has been medicated for three years. We’ve been through seizures in the swimming pool, at the top of playscapes, in restaurants, at parks, many at school, including one during a whole-school assembly.

Life isn’t easy.

But she held on to this scarf as we left, puzzling over the stitches. She had joined a knitting club last year and wondered how hard this particular pattern was to follow. I asked her if she wanted to make scarves for the Purple Stitch Project herself, and then she had the brainstorm that maybe the whole club would.

I wrote the mom who runs the club, who thought this was a fantastic idea–the girls making scarves as community service. They’re going to stock up on purple yarn when they start the club up again in the spring. The one scarf given to Elizabeth will keep on giving–both in providing gifts to other children with epilepsy, but also making sure the thing that makes her different from her friends is something they can talk about, to bring them together rather than set her apart.

I don’t know everything that goes on inside Elizabeth’s mind, the changes in weight and self-image, going from from manic energy to lethargy, from seeing the silver lining everywhere to feeling surrounded by doom, to doing well in school to having trouble concentrating on anything.

We do the best we can.

If you knit, we encourage you to join in. Make something purple and send it in to the Purple Stitch Project. The child who gets it just might be someone you know, someone like Elizabeth, who will take your one scarf and turn it into something much, much more.

When two writers get married, you gotta have a story arc, right?

When two writers get married, you gotta have a story arc, right?

Unless you’re writing a bedtime tale, every good story has to have its falling and rising action, its complications and cliffhangers. So when you meet the man of your dreams through a writing group and get married in a bookstore, you have to brace yourself for the extra punch that is bound to find its way into your love story.

I’m a big believer in Jack Bickham’s story structure. He tells us good narratives are built when each scene contains a goal, an obstacle to the goal, and a disaster that carries us into the next goal. So here is our wedding day story, told Bickham style, with all the disasters perfectly in place.

We begin with Scene #1.

Goal: To meet friends and family in Central Park for a laid-back gathering the morning of the wedding day.

Obstacle 1: Our hero couple is late. Kurt runs ahead to meet with everyone.

Obstacle 2: Ten-year-old daughter Elizabeth suddenly starts feeling very bad on Fifth Avenue. She has a headache and starts crying.

Disaster: They can’t even make it into the park, as she starts turning sort of gray. She has epilepsy and may be starting the wedding day with a seizure in Central Park. And who has the medicine? Kurt.

That worked, right? You are hooked in the story. I wish it were fiction, but this is how the day begins. So let’s move to the next scene.

Goal: To get Elizabeth her medicine before she gets any worse.

Obstacle 1: Kurt has already run into the park. So Deanna calls him. He starts heading back.

Obstacle 2: It’s really noisy and difficult with construction near the park entrance. Elizabeth and Deanna start moving, one bench at a time, into the park. Elizabeth can’t really move more than a few yards at a time, clutching her mom.

Disaster: Kurt arrives, and the panicked couple realizes they didn’t pack any meds in his backpack.

You see how this day is going. Wedding is in 7 hours and we have a full-blown crisis on our hands. Now for Scene #3.

Goal: To find medicine for Elizabeth to see if they can make her feel better to head off a seizure.

Obstacle: They’re in Central Park with no idea where a drug store is. Kurt asks for directions. CVS is five blocks away. He takes off running.

Disaster: When he gets there, they don’t have anything he recognizes as something that would help. He calls, but Deanna is intent on Elizabeth and doesn’t even hear it buzz.

Ticking clock. All essential story elements. But the hero is on his way.

Goal: Kurt: to bring something that will help. Deanna: to get Elizabeth closer to friends and family should they need support if she seizes.

Obstacle: Kurt starts heading back, hoping one of the three things he bought will work. Deanna keeps moving Elizabeth one bench at a time toward the group, and they all finally converge at the Alice in Wonderland statue.

Resolution: Elizabeth manages to take some dissolve tabs and perks up. Within half an hour, she is running all over the park and climbing rocks with the other kids.

So you think the wedding day will go on normally now, right? You would be so very wrong. Before leaving this chapter, we have to get you another cliffhanger to ensure you keep reading. No problem.

Goal: Deanna has to get to the salon to start the preparations. She says goodbye to everyone and heads up Fifth Avenue, managing to locate a taxi and get back to her apartment.

Obstacle: The salon is not far from where she is staying, so she thinks she will walk. She also thinks she knows where she is going.

Disaster: She gets lost. And it starts to rain. Seriously. Rain. If this were fiction, the editors would cross this out. Cliché, they would say. Nix it. But it’s really raining.

Deanna is not one for pity parties, but it’s been enough of a day already, and after crossing Houston St. three times (foreshadowing for the future Houston St. crossing from hell!), her cell phone failing to connect to the salon for help, she sort of leans against the brick wall of a random building and busts out crying. But of course, she has to have a new goal. One can’t stand on a corner and cry all day. The narrative must move forward.

Goal: To find the $#%* salon. She pulls out the printout of the appointment confirmation to try the number again and sees that they do have a picture of the entrance to the salon.

Obstacle: She knows she’s on the block, but there are several doors exactly like this one, all locked, all with buzzers to apartments. She buzzes one. An annoyed random New Yorker tells her to keep walking. Finally, she sees that there is a 10-inch sticker on one pane of one door that says the name of the salon. She goes in and reaches in her bag for all the stuff she needs for the appointment.

Disaster: No fascinator. No hair style print outs.

When compared with the other disasters, a little thing like this is really nothing. They get on the computer, the stylist tells Deanna everything she likes is dated, and sits down to do whatever she likes. Deanna tries to call someone to fetch the fascinator, but everyone’s in museums and sightseeing, so she just lets it be.

We pick up our story again at Deanna’s parents’ apartment. She has carefully packed everyone’s things. She’s calmly sewing the straps to her back-up wedding dress in case the bustle on the train to her primary dress doesn’t seem to be holding (it fell when they tested it), so she can dance in the second dress without tripping. Kurt delivers the girls safely to her and leaves to get ready. We’re about to head into the tight-timeline of the last two hours, exacerbated by the make up artist being overbooked. Elizabeth gets her hair done, and Deanna glances in the mirror to notice that her $250 hairdo has already started to fall.

Goal: To get makeup artist to help with hair problem.

Obstacle: Makeup artist is late.

Obstacle: Deanna has to start reversing the order of things to leave time for the makeup artist, and packs up wedding dress for move to the venue. Can’t find shoes.

Obstacle: Every time she moves, her hair falls more. Her mom orders her to sit. Mom has pretty shaky hands and can’t fix it herself. Dad starts the search for the five-inch platforms that are essential for the dress, which will drag the ground otherwise.

Disaster: Makeup artist calls but keeps getting disconnected. Says she’s outside the door but can’t get in. But she’s not there.

Deanna is really trying to laugh about everything. They finally get through to the makeup girl, and she’s two blocks away, banging on the wrong door. They are crowded in the apartment now, with a videographer, a photographer, two kids, two parents, a bride, and a makeup artist. And no booze in the house. (That should be a disaster right there.) But Leora fixes the hair with hair pins donated from the photographer, who goes above and beyond the call of duty by taking her own hair down for the bride’s. Makeup commences. Dad finds shoes. But boy, is everything late. Let’s move on to the next series.

Goal: To get to the bookstore on time.

Obstacle. Dear reader, just start laughing now. Because the way things are about to go…yes, just laugh now.

Obstacle: Nasty mean taxi driver. He doesn’t know where Housing Works is. He doesn’t know Crosby Street. Deanna explains that it is near Houston and Lafayette. She has no idea what he’s about to do.

Obstacle: Traffic is horrible, sometimes causing a 10-minute wait at an intersection. Deanna was supposed to be setting up the tables ten minutes ago, and dressing now. It’s 20 minutes until the wedding, and she’s in a taxi and not dressed.

Obstacle: He stops many blocks away from the venue. Deanna has two giant boxes of books and decorations, a wedding dress bag, a ten-year-old, and a mom who can’t walk more than about a block without assistance. She tells him they have to get closer. He circles the block, which takes ten more minutes. Deanna is supposed to have the tables set up, be in her dress, and should be sipping white wine out of view while people arrive. Instead she is in a taxi four blocks away with everything for the wedding in it.

Obstacle: The taxi driver says, “This is it,” and puts it in park. They can see Housing Works, but it is far. Across the enormous Houston Street, which has a walking signal barely long enough for regular people to cross in time, and they have all the wedding stuff, a child, and a mom who has left her walker back at the apartment.

Disaster: They get out anyway.

Now I can tell you are probably either laughing or upset at what’s gone on. And honestly, when we got out of the car with all those boxes and bags, and really no way to carry them, I didn’t see what we would do. I gave the wedding dress to Elizabeth, my bride bag to mom, and I carried the two stacked boxes in front of my face as we set across this crazy street full of traffic, about 50 yards across. For you Austin people, it would be like crossing I-35, if the highway had a red light in it, one that serves more as a suggestion than an actual traffic stop.

Goal: To get to the wedding without dropping everything.

Obstacle: Halfway across this mega-street, Deanna simply cannot carry the boxes any further. The light changes, and they are trapped by a low concrete construction barrier. They stand near it. Deanna sets the boxes on the barrier, knowing that if she doesn’t hang on, they will fall into some utility construction pit. Her arms are screaming, and she knows she is going to be feeling the pain for some time (and five days, later, they still hurt.) Mom is gamely holding on to the barrier. Traffic is whizzing on either side of the trio.

I honest-to-God start looking around for someone to pay to help us carry these things. I see no way we can get the rest of the way across this road. But New Yorkers go on their merry way, the light changes, and people start moving.

I tell Elizabeth she has to help, and I give her the lighter box. Mom gets the wedding dress. I carry the box full of books and know we simply have to do this.

Obstacle: The light turns while we cross.

Screw it. At this point I’m ready to get run over.

With about 10 minutes until the wedding, Deanna sits Elizabeth and Mom on concrete steps next to some random interesting looking characters and makes a mad dash down the street to the venue. They are waiting, probably wondering exactly how to start a wedding with no bride. They hurry down to fetch the boxes and help the others to the bookstore. Deanna goes inside and realizes:

Disaster: We also have no groom.

It’s moving swiftly now, isn’t it? Moving into that climax! Bickham would be pleased with our structure!

Deanna’s Goal: Decorate tables, put on dress, get FREAKING UPSTAIRS TO HER GLASS OF WINE! Thankfully, The staff was all ready, so after some quick instructions, they got the tables done and she dashes to the bathroom to put on her dress.

Kurt’s Goal: To get to the venue.

Now Kurt was dealing with similar obstacles as far as traffic. He had Emily and the bride’s Dad. But they were unencumbered, so when they got a few blocks away, they hopped out and headed toward the venue, where many of the guests were all gathered, waiting to be allowed in since Deanna was still having the tables set up.

Disaster: But as Kurt approached the crowd of people, he remembered he didn’t have the black hair tie Deanna had made for him. It was in his backpack…which wasn’t on his shoulder. He turns around, shocked at himself. He has left his backpack in the taxi. And it wasn’t just holding his hair ribbon. But Deanna’s $3000 professional camera that she uses for work.

We should stop here, right? I mean, that’s a hell of a disaster for a groom, right? How does he tell his bride, five minutes before their wedding, that her livelihood just drove off into a sea of yellow? But we must go on with our tale, take it to its conclusion.

Goal: To find the *^&% taxi with the backpack in it. Kurt gathers a few people and they rush in the direction of the taxis, which are all blending together.

Obstacle: There are hundreds of them. They are looking in windows, trying to find the one with the backpack.

Disaster: They fail.

Blake Snyder (RIP, Blake!) talks about the “Long dark night of the soul.” In every story, there is a moment where there seems there is no way out. No way to solve the problem at hand. We’re there.

Goal: Kurt is trying to recover from what has just happened. The people who know decide to keep it from Deanna until after the ceremony.

Now, during all this, Deanna is upstairs, gulping wine and wondering why everyone is still being held outside. The tables are ready. She calls down to tell them to open the door and asks a friend how Kurt is doing. Nervous, she is told. Figures. It had been a tough day.

The wedding coordinator comes up. It’s 45 minutes past the wedding start time. Deanna is shrugging. It’ll happen. They suggest we go ahead and start.

I’m happy to report that the disasters that occurred DURING the wedding were the hilarious sort:

The officiant called Deanna the wrong name twice, and she finally spoke up, asking Kurt, “Is that the name of your other girlfriend?”

The bakery neglected to inform us that the top layer of our book cake was actually fondant-covered cardboard. So we sawed through it for several minutes before realizing it could not be cut.

Otherwise, spot on perfect. Vows. Music. Cocktail hour with gloriously delicious appetizers. Photos. Four-course dinner. A lovely blessing by Deanna’s Dad. A sweet message from Kurt’s mom. A hilarious toast by friend Audrey. Then waltzing.

We roll to the conclusion of our wedding story as we approach that time when Deanna must be told about the camera. Their marriage is three hours old.

Goal: Kurt wants to wait until they are in the limo.

Obstacle: Deanna is puzzled why the venue is giving them vodka and champagne when they have vodka and champagne in the backpack. She suddenly remembers the backpack. Where is it? she asks Kurt.

Realize that at this moment, the limo is in the street, the driver waiting by the open door. Everyone at the wedding is standing outside the bookstore holding white rose petals.

Obstacle: The wedding coordinator arrives with a paper. They have filed a claim with the taxi company for the contents of Kurt’s backpack. Deanna realizes what has happened.

Kurt tries to launch into a “I didn’t want to tell you” spiel, but Deanna already knows all that. She would have done the same thing. It’s just a camera. An expensive one, sure, but just a piece of equipment. That can be replaced.

She does know this: What they can’t get back, can never get back, is this moment, walking out of their wedding, friends and family ready to send them off, showering them with petals. She tells him to put it from his mind, and they walk out into the New York Street, and everyone cheers, and petals waft through the air, and they duck into a black limousine and on to the rest of their lives.

Epilogue:

The camera has never been found.

And a bigger disaster unfolded over the next few days: our marriage license was unsigned and unwitnessed. Emails with the officiant went very badly and by Monday we were certain we’d have to go to City Hall and have a second ceremony to make our marriage legal. Kurt played the hero again, intervening after some rather difficult and unpleasant correspondence between Deanna and the officiant, and met the woman to get the license signed.

We are safely home now (despite United Airlines doing their best to keep us from getting here.) We try to laugh about the disasters of the day, and do take to heart what everyone says—today’s difficulties are tomorrow’s great stories.

Thank you for reading ours.

 

 

 

 

 

The terrible parent or the good one? On publishing your children’s books

The terrible parent or the good one? On publishing your children’s books

Quite a lot of buzz in the author blogosphere has centered around the New York Times article about books that parents have paid to have published for their children so that they can become authors. In that story, authors weighed in on how inappropriate this action was, as kids are still learning, and false expectations of both success and what it means to be an author were damaging.

Maureen Johnson also weighed in on this, separating the act of writing from publishing. Writing was good. Going public was not.

On the forums I participate in, both public and private, the overwhelming sense has been that these parents were dead wrong, that publishing is a business meant for experienced and seasoned writers, and kids should stay within the printed-and-stapled variety of book production.

Whew.

I tended to stay out of the threads, because goodness knows I had done this very thing myself. And the backlash among authors was pretty hard to bear.

Yes, I published my daughters’ book. I had started a little publishing company and done all the paperwork, the filing fees, the accounts. And couldn’t do the book I planned to because it was full color and the overseas run was just too expensive for me right after my divorce. I had a company and no books. I was going to chuck the whole idea.

And that summer, the girls got a book idea. It was something we could do together, a picture book where we’d use my photography rather than drawings. When I checked for similiar titles on the subject on Amazon I was shocked to see there were NONE aimed at children. (A couple have come out since.)

My friend had just gotten her masters in publishing and was willing to design the book for us to have a sample (the world was smiling on us.) We all spent about eight weeks producing the title. I had no expertise whatsoever in the subject matter, so I really had to rely on the girls. They dictated; I typed. I ran changes by them. I did help make sure the sentences were consistent, especially for the part my seven-year-old did.

The book now pays much of the overhead of my small press two years later. It’s sold thousands of copies. The girls had an event at Barnes and Noble, by invitation. We look at each invitation to do an event, or talk to a classroom, and decide if they want to do it or not. We turn down most things, as they want to go on with their normal kid lives. The book has gotten some criticism, which I talked to them about and they realized–hey, good points! But they had their reasons and still stood by their ideas. These were all teachable moments, to learn about the personalities of people online. As long as I was there to introduce it, to remind them—whew, people can be mean! It became an excellent conversation on how people act online (before either of them got exposed to it WITHOUT me being there to give them perspective.)

It’s been an incredible experience, and I think even if this hadn’t happened, if we had sold ten copies to grandparents and gone on, that wouldn’t have mattered either. It was something we did together, and a project we’re proud of. We didn’t expect fame or fortune—it started out as just something to put through my press because I had nothing else. The fact that the girls have money in accounts to go toward college and that I had seed money to put out the book I dreamed of is just—well, life smiling on us.

I think anything any parent does can go well or go badly. Maybe it’s publishing a book, maybe it’s forcing them to try out for commercials, maybe it’s never encouraging them or taking their artistic sensibilities seriously. There are a thousand ways we can err, but only the parents and child within any given situation can really know if a path they’ve chosen was a good one, or something that can do harm.

 

 

Elizabeth goes global

Elizabeth has been unique since well before she was born, surviving the loss of her twin when my water broke at only 10 weeks gestation during a flight between Switzerland and the US (the longest twelve hours of my life.)

Sometimes when life gets really difficult, when she’s having a “Bad Brain Day,” as we call it, to externalize her inability to think clearly or control her emotions, I hug her and tell her how thrilled we are that she’s here. We didn’t think we’d get any days with her at all. So even hard ones, where homework seems impossible, or, like a few weeks ago, when she had a seizure and threw up before the entire school at an assembly, are still good days. Any day with her in it is a good day.

We learned a few days ago that the manufacturer of the glue that holds on the electrodes during an EEG test wanted to use Elizabeth’s video as an educational tool for other parents. They had discovered, as we had, that there wasn’t a lot of footage of this, clear explanations about what happens when your child has to be wired for days at a time to monitor brain activity.

I can’t tell you how glad I am to have had the equipment I had that day to shoot the high definition video and stills to document our experience so that other parents would get a chance to calm their fears and those of their children. (And that I could keep from shaking too much as I hand-held the camera while she went through this.)

The video was reworked with an amazing song by Jonny Boston licensed through Triple Scoop Music. The company will be using it in several countries, and it is already up on their web site. I updated Elizabeth’s story, so others would have an idea of how she is doing. I can’t imagine living my life like she does–never knowing when or where or how a seizure will strike, what will be happening when she comes out of it, or who might have seen. She’s eight now. It’s a lot to manage. But she does great.

Here’s the newly spit-shined video. We’re going to put up another one soon–something FUN. She saw lots of kids on Amazon were upset that they couldn’t get their spinning plate juggling kits to spin, so we recorded her showing them how to do it properly (the kit took some modifications–all her ideas.) That’s my girl.

Elizabeth’s Not-So Merry Go Round

And the health care system goes round and round. My 8-year-old daughter Elizabeth and I feel like we’re getting tossed like so much Caesar.

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.

On Cheez Whiz and Seizures

I’ve always been told that the more adjectives you pile on, the further something deviates from what you thought it was.

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.

Pediatric Ambulatory EEG for Epilepsy and Seizure Disorders — Elizabeth’s Story

Ambulatory EEG in children

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.

Pediatric ambulatory EEG

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.

Gauze wrap for EEG

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

Playing at home during EEG

Elizabeth plays her favorite video game during her EEG

Machine for an ambulatory EEG

Elizabeth with her gear for her three-day home EEG

Grace in the face of adversity

My youngest daughter is Elizabeth Grace. She’s seven, likes to paint her fingernails a new color (or two) every day, refuses to eat anything that isn’t yellow, and has a still-unclassified seizure disorder due to malformations of her brain.

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.

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