How Harry Potter Kept the Lights On When My Son Was Going Blind

Mimi Cross bio hazard pic My Longest Year copy.jpg

Inspired by YA author John Green‘s show of vulnerability when speaking about his new book Turtles All The Way Down on a recent broadcast of NPR’s Fresh Air, I’ve decided to finally share this very personal story about the event that scared me most.

 

“Mommy, look. The lights don’t work.”

“Show me.”

My little boy, who had turned eight two weeks earlier, flicked the hall light switch—

The lights went on.

I’d already called the doctor the evening before, when my son complained he was having trouble reading. The doctor suggested his eyes were tired. Dry maybe, because of the winter weather.

“It’s probably nothing,” he said.

I said, “It’s not nothing.”

“Bring him to the office in the morning.”

That night, like nearly every other since my son was born, I read aloud to him. We were deep in the Harry Potter series, and in the bedtime hour, where darkness is the norm and dreams begin to beckon, the vivid imagery of Harry Potter and the Order of the Phoenix transported us both from my son’s room to Harry’s wizarding world, the story soothing us like a familiar song. We’d been to the real Wizarding World of Harry Potter in Orlando just six weeks earlier—although ‘real’ may not be the best word to describe the wonderful fantasy-fulfilling destination.

The next morning didn’t feel real either. By 9am when we arrived at the pediatrician’s office, my son couldn’t see the eye chart. By the time we got to the eye doctor, he couldn’t see the chair in the examination room.

We drove to the emergency room at Jersey Shore Hospital, the children’s wing. It was empty, yet the attention we received was minimal. I had a bad feeling. Check in, triage—both processes were completely chaotic. The seats in the waiting room were dirty. I wanted to leave.

The head of neurology was on vacation. When I asked to speak to the neurologist on call, someone on staff handed me a piece of paper. It was a bio, with a picture of the doctor.

*

“Your son will need to undergo a battery of tests.”

The list included a spinal tap, i.e., a lumbar puncture, but there was no pediatric team available to perform the delicate procedure, and pediatric specialists—I was told over and over—were definitely necessary.

We waited hours for a room. The staff in charge of assigning one wasn’t told that we were there. By this time, my son was blind, except for the ability to see shadows in front of his left eye.

There were serious questions to consider. Was there pressure on the brain? Would a lumbar puncture reduce it? Meanwhile, my son needed an MRI. A CAT scan. But since no one knew what was wrong, anesthesia for the MRI wasn’t an option. Nor was injecting my son with a substance that would allow them to see contrast if he did get an MRI. Was he the victim of a virus? Was there swelling? Antibiotics, anti-inflammatories—not options.

*

Except for the few horrific moments when the shunt was placed, (for a blood draw, with an eye toward an IV drip at some point), my son remained calm—calm, and fascinated. That was my boy during the MRI, (without contrast), which was finally given without anesthesia. An hour of stillness, of listening to the magnetic resonance imaging machine, the knocking sounds and whirring which, when aurally embraced, are musical.

I stood for that hour, and held my son’s foot. So he’d know I was there. So he’d know he wasn’t alone. I never left his side. Harry Potter and the Order of the Phoenix, the longest novel of the Harry Potter series and apparently my personal charm of protection, never left my side. All through the waiting—in the eye doctor’s office, in the hospital room that night, I read, and read, and read aloud. Call it mother’s intuition, or a woman’s way of knowing—or maybe it was just a bit of magic. Somehow, I knew to grab the book from my son’s bedside table, before we left the house that day.

*

Sunday morning. The world outside the hospital windows was white. Was frozen.

The neurologist came flying into the room, breathless and wild haired, shocking my son and myself out of a fitful sleep.

“There’s a team—they don’t normally do children, but they’re willing to do the spinal and—”

“Willing?” I gestured to the door, to the hallway where we should clearly be having this conversation. “Willing.” I repeated. She nodded enthusiastically and began speaking at high-speed about how I needed to sign consent forms, how she needed to let the team know, because it was Sunday, and they—

The doctor knew, I realized, that she should have come in the day before to see my son. She knew, that what was happening to him could be very, very serious.

“If it had been your child,” I pressed, “would you have been here yesterday?”

Her smile fell, finally. She admitted that she hadn’t realized how severe my son’s condition was.

“You spoke to me yesterday,” I said. “How the fuck did you not realize?”

The doctor looked shocked. More than that though she looked guilty.

“And now,” I continued, “Here you are, after telling me yesterday that nothing could be done because there wasn’t a pediatric team available—now you’re saying it’s okay to go ahead with a procedure that could leave my son paralyzed because you have a team that normally works on adults who is willing?”

That’s when she told me about another hospital. “Children’s Hospital of Philadelphia,” she said, “is one of the best hospitals for children in the country.”

I said, “I want to go.”

My mother, on the phone, counseled me to stay put—we all knew moving my son was a risk. But I knew—somehow I knew—that staying where we were was more of a risk.

“I want to go now,” I said.

*

They would have helicoptered us, but there was too much snow. So we went by ambulance.

The two EMTs had names I’ve forgotten, but together they sounded like a wine company. The two men also had kindness, raying out from their eyes, from their smiles, like light.

“Lumos!” demands Harry Potter, waving his wand, when he needs to spark a glow in the darkness.

I didn’t have a wand, or a light-giving spell, but those two men were there for me, and I had Harry Potter and the Order of the Phoenix. I read aloud to my son for the entire two-hour ride.

Halfway down to Philly, I told the EMTs my son was supposed to be hooked up to an IV drip.

The one sitting in the back with us, said, “Really? They didn’t tell us that.”

I said, “Really.”

He connected the bag.

Lumos.

Two hours. Lights flashing.

My son. Looking up at me. Though he couldn’t see me.

*

We arrived at CHOP. The doctors came in groups. They asked all kinds of questions. But they didn’t just ask me those questions. They asked my son. They treated him like the person he is.

We stayed four nights. The lumbar puncture—the only time my son had to be anesthetized, the only time I wasn’t allowed to be with him—was the hardest. I waited out in a large lounge. People nearby were crying. I was crying, but just a little. Because I had already decided, if my son remained blind, well, there were worse things. They were happening all around me.

*

Over the next few days, between Harry Potter reading marathons and cuddle sessions with his new stuffed animals, my son received intravenous steroids that began to restore his sight.

To me, the recovery of his vision was nothing short of miraculous, but my boy was still relegated to a hospital bed, so I was thankful that Harry Potter and the Order of the Phoenix is 870 pages long. It is also increasingly complex. Harry faces new challenges and there is a deepening of mysteries. I didn’t fail to see the parallel.

My father said, “I don’t know how you do it, how you can sit and read aloud for hours like that.”

I told him it was because I wanted to find out what happened next in the story and that was true, but also, it was because reading to my boy was something I could do in a time where I felt completely powerless. As if The Order of the Phoenix was a Sanskrit mantra or a prayer, I put my passion into reading for my son. I read as if it could save his sight. I read to save my sanity. That book was my wand.

The doctors came and went, their smiles growing every brighter. The kitchen sent up mac and cheese, and that was deeply comforting. But nothing gave us comfort like Harry Potter, who, although he is a wizard, is still in many ways a boy. An ordinary boy, just like my son.

*

Ten days at home, where I carefully measured ever decreasing doses of oral steroids with almost paranoid precision. Another trip to CHOP, where my son enjoyed another visit with Dr. Liu, the rock star ophthalmologist, and half the neurology department. Everyone was optimistic.

I lifted my head, and looked around.

*

Today, with the four-year anniversary of my son’s ‘adventure’ approaching, after dozens of trips to Philadelphia, and about 1200 days of vitamin D supplements, after countless blood draws, many MRIs, and as just as many neurological exams, my boy is fine. He was very lucky that the optic neuritis didn’t do any permanent damage—his vision is 20/20. Plus, he’s seen a tiger up close at the Philadelphia zoo, visited Maillardet’s automaton at the Franklin Institute, fallen in love with Philly cheesesteaks, and thinks maybe he’d like to go to Drexel—though that may be mostly because of their dragon. My son’s been partial to the fire-breathing beasts since he was introduced to Norbert, in the very first Harry Potter book, Harry Potter and the Philosopher’s Stone.

The Philosopher’s Stone has many properties. It’s sometimes called the ‘elixir of life’. It is useful for rejuvenation. I can vouch for that.

My son is now a participant in a study at CHOP, and I’m glad, because this means he will continue to see the neurologists at Children’s Hospital of Philadelphia yearly, until he is eighteen.

It’s been determined that my son’s optic neuritis episode was not related to MS—but we still don’t know what it was related to. And that we don’t know—is a good thing. The fact that we don’t know means that the doctors at CHOP have ruled out all serious illnesses.

Still, I will continue to swab the inside of my son’s cheek once a month for the next year. (Oversize Q-tips, tiny containers, fridge to freezer, DNA—you get the idea.) I will continue to make sure he takes 4,000 IUs of vitamin D daily. And although I will continue to take him to the excellent local eye doctor any time he’s at all concerned about his eyes—my son is extra sensitive now as far as his eyes go, and I am hyper vigilant—we recently saw the ophthalmologist at CHOP for the last time.

As he examined the pale scarring at the back of my son’s eyes, Dr. Liu said,

“Anyone who looks—will see this. For the rest of your son’s life, it will be there. He has his scar now.”

Did you hear that, Harry?

The Best Teachers are Sirens

Meet Mrs. McGee . . .

A total Siren, right?

Mrs. McGee is the teacher featured in What Do You Want to Be? a new picture book written by Beth Carter and illustrated by Leo Silva.

I ‘met’ Beth on author David Harrison‘s wonderful blog about two years ago. At that time, I was going to his blog almost every day for inspiration. David has written over eighty children’s books and runs a Word of the Month poetry contest on his site that’s great fun. If you need inspiration, I suggest you try it, the word prompt will get your pen moving. For me, the experience was more about community than contest, and I felt like my poems had a home on David’s site even though they were all really works in progress.

When she found out that What Do You Want to Be? was going to be published, Beth, who lives in Missouri, asked me if I would write a song to go along with her book. I said yes, and last weekend I went up to Woodstock with #MySonIs5 to record the track that What Do You Want to Be? inspired. Hope you enjoy it!

Here are a few pics of #MySonIs5 recording his part at Kevin Salem‘s studio in Woodstock.

After a while, what starts out as fun in the studio becomes work, and even #MySonIs5 begins to feel the pressure . . .

Finally he finishes, and takes a bow. #MySonIs5 has stamina in the studio and—what? What did you just ask me? Did I actually make him listen to old Grateful Dead on the drive home from Woodstock? Um.

Click on the pic of Mrs. McGee to get a copy of Beth Carter‘s book for your kids. If they like the song, tell Beth and she’ll probably send you a copy, or come back and listen any time here on Sirenstories.

To learn more about Beth Carter, visit her blog, Banter with Beth

What Do You Want To Be?  Song lyrics

What do you want to be?

Asked Mrs. McGee

Raise you hands high and share your dreams with me

What do you want to be?

What do you want to be?

Raise you hands high and share your dreams with me

When I arrived at school today

My teacher smiled and said let’s play

Join me in a circle on the floor

She asked us all what we held dear

The people we loved to be near

And what we thought the future held in store

She gave us crayons & pens & pads

She said, no answer’s wrong or bad

Just think my friends then think a little more

Use pictures, words; free thoughts like birds

Express yourself and you’ll be heard

You’ll learn in part what you are all here for

What do you want to be?

Asked Mrs. McGee

Raise you hands high and share your dreams with me

What do you want to be?

What do you want to be?

Raise you hands high and share your dreams with me (I don’t know!)

A baker or a builder,                          

Or a swimmer in the sea

A mommy having babies (Maybe!)

Or a maybe a daddy

A dentist, doctor, artist, author                              

Teacher, Forest ranger, or you might like to sing . . . (I’d like that!)

You can do anything!  (Definitely.)

What do you want to be?

Asked Mrs. McGee

Raise you hands high and share your dreams with me

What do you want to be?

What do you want to be?

Raise you hands high and share your dreams with me

An astronaut, a lawyer

Or a farmer growing trees (Next stop outer space!)

The president, a fireman

A keeper keeping bees

A dancer, banker, preacher, painter

Help save things are endangered (Yeah, like pandas!) maybe you’ll sew . . .

You can give it a go!  (I think I might want to think about this . . .)

What do you want to be?

Asked Mrs. McGee (A baseball player!)

Raise you hands high and share your dreams with me

What do you want to be?

What do you want to be?  (A candy maker!)

Raise you hands high and share your dreams with me

(A cow!)

(I just want to be me.)


Back to Book Trailers, The Accidental Adventures of India McAllister

My favorite things: music, books, movies. The order varies, but the list explains why I love book trailers.

The trailer for Charlotte Agell‘s middle grade novel The Accidental Adventures of India McAllister is one the best I’ve seen.

One of the things that’s so wonderful about this trailer is how true to the book it is. The trailer captures the essence of The Accidental Adventures of India McAllister. In this case, I read the book first then saw the trailer. My review of the book is below.

India is one of my favorite characters in Middle Grade fiction today. She’s even got her own blog, which is adorable and much more organized than mine. Of course India’s creativity might have something to do with her multitalented creator Charlotte Agell who probably gives India a hand once in a while. Click on India’s pic to visit to her blog.

The Siren behind the music for India’s book trailer is Charlotte’s son, Jon Simmons. The music is perfect; it expresses both India’s sweetness and her quirkiness.

Jon is also part of a pop/rock band based in Boston called The Crosswalk Kings. Look for a post about his music soon on Sirenstories

 

I finished reading The Accidental Adventures of India McAllister on the beach. The pages have a little sand in between them now, and I think that would make India happy.

India loves the outdoors, and author Charlotte Agell has included some beautiful descriptions of inland Maine in this entertaining and moving story about a sweet-natured nine and a half-year old girl who takes her fairly complicated life pretty much in stride. In a world full of little drama queens, I found India’s attitude refreshing.

Besides being an excellent and economical writer, Charlotte Agell is a gifted painter. An adorable watercolor portrait of India and the family pet bird, Beatrice Strawberry graces the cover of the book. I’d like to see Ms. Agell put out a version of India with full-blown watercolors of all the characters and their homes. I want to see paintings of things like “the lilac bush hidden in the fog” that India sees when she can’t sleep early one morning and steps outside to sit on her front porch swing.

Wolfgang, Maine, where the book takes place, is a front porch kind of town and by the time I’d finished the book I wanted to go there. Although there are no watercolors other than the front and back cover and jacket flaps–they feature more great pictures of India with the bird and her dog Tofu, the jacket designers obviously knew a good thing when they saw it–the book is full of sketches: clever drawings of India and things she likes, plus–just as important–things she doesn’t like. The sketches are accompanied by comments that made me laugh out loud.

India has a unique voice. Her backstory is rich. The settings are beautifully rendered. The book is colorful in every sense of the word, as is India’s slightly wacky artist mother.

India was adopted, and we learn she has questions and issues around that, but the book isn’t a big drama. Instead, The Accidental Adventures of India McAllister is a story, told by showing us small wondrous details in what seems like a very real little girl’s life.

I found myself wondering what will happen in India’s future, especially as far as she and her best friend, a boy named Colby, are concerned. Snowstorms in June, whale songs, yearning, and insightful comments fill this book that begs to be part of a series. A sequel won’t enough for those of us who have fallen in love with India McAllister.

I checked out this book as a possible gift for my niece who is India’s age. Unlike India, she’s not an avid reader. I’m pretty sure this perfect book of adventures will change that. I couldn’t put it down myself. It’s sweet and funny, and the way India’s small but complicated family comes together in the end left me with a lump in my throat and a smile on my face.

Confession: I’m a huge fan of Charlotte Agell‘s work. Her picture books are among my favorites, and my son, who is five, feels the same. The paintings that illustrate her books are so beautiful, I’ve been tempted to tear out certain pages and frame them.

My son and I love Charlotte’s book To The Island so much, that I used the text, with only a few alterations, as the lyrics for a song. Below is the super rough version I recorded on my laptop, at home, with my son.

I hope to go into the studio one day and do a better recording, but for now, I hope you enjoy listening to it as much as I enjoyed singing it. The words are so simple, but to me, they’re a metaphor for some of life’s more profound passages.

The Littlest Siren

Here’s #MySonIs5 recording his part for The Crankamacallit Song yesterday at Kevin Salem’s studio in Woodstock, NY.


We’re going to be using the song for the demo video we’re making later today with Polymash for The Crankamacallit iPad app which is available now on iTunes. Kevin helped me write the song and sings on it as well.

After years of admiring Kevin’s songs and being in love with his voice and his guitar playing, my dream of writing and singing something with him has finally come true . . . sort of. Kevin has produced a bunch of my songs over the years and I find it pretty hilarious that we’ve finally written something together called The Crankamacallit.

This blog isn’t really about my music, but I couldn’t resist sharing :)

I’ll make sure to post some of Kevin’s music soon as well. Until then, if you’d like to check out the app, click on the title page below.

 

The Crankamacallit Is Here!

To read about Sirenstories or share your songs, please see my previous posts or click on the waterwings in the right hand column to submit, thanks!

If you’re not looking for Sirenstories, you must be stopping by to help me celebrate the fact that THE CRANKAMACALLIT IS UP AND FLYING!

That’s right, The Crankamacallit ipad app is now available in the itunes store! Yay! Champagne, confetti, and cake!

If you want to read more about The Crankamacallit, please click on the title page below and visit Polymash, where there’s an incredible gallery and storyline teaser for The Crankamacallit. Go now, they’re passing glasses of bubbly!

Thank you Polymash, you’re brilliant!

Crankamacallit Update!

If you’re here for Sirenstories you’re in the right place, scroll down and read the last post or two (or three) or simply click on the waterwings in the right hand column and submit your songs. If you just want to listen, come back June 1st, the first song will be up.

But for those of you who are looking for a new ipad app for your child, The Crankamacallit is just about ready.

In a few more weeks The Crankamacallit will be in the Apple store! Until then, here are some still shots and descriptions from Polymash.

An interactive children’s story about building an imaginary vehicle, The Crankamacallit is filled with stunning interactive animation and surprising sounds.

Using playful, rhythmic language and rhyme, The Crankamacallit draws the user into the fantastic 3D world of an inventor’s workshop.

Part poem, part story, this rhythmic 3D fantasy was written by Mimi Cross, animated by Juergen Berkessel and narrated by acclaimed singer songwriter Robert Burke Warren, aka “Uncle Rock”. Listeners will laugh out loud at the nuances of Warren’s performance.

The Crankamacallit ipad app is nearly complete!

Here are a few words from Polymash about our project The Crankamacallit, an interactive children’s storybook for the picture book crowd. The Crankamacallit will be out this spring, I hope you enjoy these preliminary sketches.

PS The pictures don’t  begin to show the interactivity of the app—or its SURPRISES!


We are working on an illustrated, animated and interactive children’s book by singer, songwriter and author Mimi Cross. The project is called “The Crankamacallit” and will go live in Q2 of 2011. It utilizes cutting edge 3D illustration techniques, and we are creating a hand crafted quality look and feel inspired by the winning and record sales generating iPad app called “The Pedlar Lady”.

Even though we are under construction with this, I’m posting a few 3D illustrations.

Here is a scene being created in 3D, and then rendered, illustrated and animated for the app. With processes like these, we are really trying to push the limits of the Adobe Digital Magazine Publishing suite, our core our app publishing platform.  It was really intended for interactive magazines, but we are extending its functionality by incorporating innovative design techniques including video, 3D animation, HTML5 and Javascript.