The Best Christmas Ever!

There was a loud muffled banging at the door. Thump! Thump! Thump! Like the sound of someone wearing heavy gloves. I was wrapping presents on the kitchen table. Jessica was laying in the living room on some warm blankets, a safe distance from the softly burning fire, where she could see the twinkling of the Christmas tree lights.

It was the last Sunday before Christmas.

That day had dawned crystal clear and was a welcome break from the record snows of the last week. As the day progressed, it had more and more of a Christmas card look and feel. A bright and shiny, sparkly, drippy day. Icicles were forming on the eve’s of our house and the snow softened everything, and by contrast made the sky look incredibly blue. It was a diamond of a day but the real beauty was yet to come.

I opened the door, and there stood two of my neighbors. In the background I could hear the staccato ‘bruup… burrp’ of a heavy tractor somewhere near. The snow had made our side streets, including the one in front of our house, a quagmire.

Leaving and arriving was a daily adventure and someone usually needed a little help to get away from the curb and underway. Earlier, Renée and the kids had barely been able to pull away to go shopping.

My neighbors had a proposal. Would I be willing to join everyone else on the block and chip in $20 for gas? My neighbor Ed would then use his back-loader to scoop all of the snow off of our street and we could have some relief.

The main roads were plowed and sanded regularly by the city crews but due to the immensity of the snow, all side streets were a ‘no man’s land.’ Thinking about Renée slipping and sliding that very morning, I quickly agreed.

Something Seemed Different.

I turned to head back into the kitchen… hmmm… was it my imagination or had Jessica shifted her position? Naaah! She couldn’t have moved, I thought, as I went back to my wrapping, humming ‘White Christmas’ in time with the stereo. I was so sure, because Jessica was in what we now call her ‘pet rock’ stage. You know. You could put her down and that’s exactly where she would be anytime later.

Living with and Understanding the World of Seizures.

It has been said,‘…the greatest marksman in the world can’t hit the bulls-eye if he can’t see the target.’ When it comes to seizure control you could add, ‘…and doesn’t have exactly the right arrow to shoot!’ It is an inexact science to say the least.

One of our neurologists once described the problem like this:

“Imagine all of the telephone systems in the entire world, all of the wires, relays, switches and components that are required, and then multiply that times 100 billion, and that is just an inkling of the complexity and sophistication of the human brain and it’s nervous system. And that, Mr. and Mrs.Walker, is what we are up against.”

At that point in time, we had tried Jessica on just about all of the seizure control medications available. With names like; ‘phenobarbital,’ ‘tegretal,’ ‘clonopin,’ and don’t forget ‘steroids.’ Yet still, her seizures continued at the same pace, frequency, duration and intensity. We could see very little change.

All of these things, as I am sure you are aware, have ‘side effects’ and in some cases, it is like trying to tune a ‘Stradivarius’ violin with a sledge hammer. What you are doing has an effect on the sound but there are rather ‘unpleasant’ side effects.

Jessica did tolerate things quite well, but each thing we tried subdued her activity more and more. In addition to that, just the stunning effect of the seizures themselves, kind of took her phone off the hook. Thus she sank deeper and deeper into what we had affectionately began referring to as her ‘pet rock’ stage… she was immobilized and kind of subdued in general.

A Fateful Decision.

When Jessica was about five years old, we reached what the affable Dr. Burton called “An evolution of decision.” We decided that since we weren’t seeing any results of the kind we were looking for, maybe we should start dropping the medications, slowly one at a time, and see if Jessica would ‘emerge from the fog,’ is the way I posed it to the good doctor. He agreed enthusiastically.

Dr. Burton had put us in charge of Jessica’s medication. He explained that we were the world’s leading experts on her behavior. That if she batted her eyelashes wrong we would notice it, where he only saw her every three months or so.

We shared this arrangement with Renée’s sister-in-law Joyce, who in turn shared it with her family doctor who went ballistic when he heard it. He gave her a profanity-laced lecture, ending with the comment…

“Who gave them the PHD in pharmacy and seizure control?!” he demanded.

Joyce was shaken and in near tears when she called us later and shared her experience at the doctor’s office. We were a little taken back because of her doctor’s vociferous reaction, and thought maybe we had made some kind of error in judgement.

When we shared all of this with Dr. Burton, his reaction was hilarious. He raised himself up to his full height, placed his hand thoughtfully on his chin and with his best mad scientist impression said…

“… You tell the good ‘docktor’ that I gave you the PHD, and have ‘heem’ call me, if he has any ‘qvestshuns!’ ” 

We all had a good laugh at that one.

The Awakening…

Finishing my wrapping and hearing the scraping, scooping… braat… zoom… bratt of Ed’s tractor, I decided to step out in the warming but crisp afternoon and check his progress. On the way to the front door I glanced at Jessica and froze…’ hmmm… wasn’t she on her back the last time I had checked on her just fifteen minutes ago?’ Now she was just laying there quietly on her stomach, staring at the twinkling lights on the tree.

Shrugging off  the thought, I opened the door and stepped out into the blinding winter afternoon brightness. The sun was full on the front of the house and in combination with the white snow cover made a very shiny scene. Blinking, I stepped out and shut the door behind me to protect Jessica from the draft.

Ed was just finishing up and had done a marvelous job with the street. Combined with the warming effect of the now exposed black asphalt, the wisps of snow he left behind were melting fast. Our street was now an island of summer in a sea of winter.

Headed home, Ed gave me a friendly wave as he drove by. Since we couldn’t speak over the tractor, I simply waved back and gave him a ‘thumbs up’ for a job well done.

I stood there admiring the scene. What a perfectly wonderful, beautiful, sparkly pre-Christmas day this was. Very breathtaking I thought, as I turned to go back in the house.

As I opened the door, I looked full into the face of Jessica as she pushed herself up into a sitting position. Propping herself upright with one arm, she glanced quickly around the room and back at her stunned father!

Jessica had awakened! Her eyes had a certain sparkle. A kind of ‘look at me Dad,’ expression was on her face.

My eyes began to blur as I thought out loud…

“… This is going to be the best Christmas ever!”

Next Week: “The Photographer from Afar.”

I will continue to share the answers to the question “What happened to Jessica?” every Monday in the weeks ahead. When I have received sufficient feedback and questions, I will add a Thursday episode, as needed, to this blog, focused on answering your questions and comments.

Thanks for your interest.

Jim, Renee & Jessica