Project Seizure-Freeedom

I have found that through the most difficult and painful times in my life is

when I have grown the most and God never left me.

He hasn't left you either.

Wednesday, March 17, 2010

Good Morning, Beautiful, Winning the Battle Over Seizures-trailer

Today we finalized the trailer for Good Morning, Beautiful. When viewing this, I'm reminded of many things. Some of those remembrances are painful, but others are hope-filled and incredible. Through all the highs and lows, when we couldn't see to dance around it all, God was there.

No matter what circumstance you are in, you are not alone. Buchmeister Fuller once said, "Ninety-nine percent of who you are is invisible and untouchable." I've found this statement to be true, and have realized that many of the storms of life were battled not on dirt and grass, but in the inner most depths of my soul. It was harder to hold on to that rope of hope when what I saw, wasn't what I was praying for.

As you view the trailer remember we are the average family, with all the same struggles that every else goes through. In fact, I'd wager we failed more times than not, but we were not in this alone. And that, made all the difference in the world.

Click here to view the trailer:
Good Morning, Beautiful, Winning the Battle Over Seizures

Wednesday, March 10, 2010

Advocates in a foreign land

Like most families dealing with seizures, we had no book of guidelines or tutorials to refer to. As our child's parents, we had to become advocates in a foreign land—the land of medicine. I don't know about you, but we did not have the training for this sort of position. Nope, no background, well, other than high school Biology and Health class. And to be honest, I don't even remember most of that. 

In order to be the best advocates for our child in this unfamiliar land, we had to learn about Christina's condition. We researched, prayed, and asked anyone we came into contact with if they knew anything about what we were going through. I read as much as possible about the diagnoses that were inked onto medical charts with our child's name at the top.

Reading through medical jargon was, for me, an act of bravery. I was totally intimidated, but my struggling daughter motivated me onward. I learned the meaning of some words that I still cannot pronounce. And this small act of advocacy provided the knowledge my husband Larry and I needed in order to make one of the most important decisions of our lives.

That decision brought us to the part of our story from which the previous excerpt was taken from Good Morning, Beautiful and now continues below: 
Christina moved her head and cried softly. I realized her ears were feeling the pressure change as the plane began to descend. Touching her cheek, I whispered softly, “It will be okay.” Feeling a contradiction in my own words, I knew how serious her condition was and that we didn’t know why she was ill, or how to help her.

The skies remained clear as millions of stars traded places with the lights of the Minneapolis-St. Paul area. As we descended, streets and highways became visible, illuminated by lighting. Looking similar to a miniature racetrack, vehicles moved in different directions.

When the flight attendant came by to check our seatbelts, she offered words of encouragement, citing Mayo as the best place in the country. “They know what they are doing there. We wish you and your daughter the best of luck,” she said empathetically.

A feeling of urgency came over me, for it wasn’t luck that was needed. In fact, it was the farthest thing from Christina’s need. For a moment I hesitated, almost afraid of what the reaction might be, until I could contain it no more.

 “Don’t forget to think of her when you pray,” came rolling out, announcing the hope that was burning, dimmed by a tempestuous wind, but still lit.

What we needed for our Christina was a miracle.

One thing was certain we were in the fight of our lives, for her life. With this, just one of the squalls, of a violent storm with the worst yet to come. It would be the storm that would bring us to our knees in desperation and jubilation.

Monday, March 1, 2010

The middle of the epilepsy storm

I will never forget the first day my husband and I heard the word seizure in connection with our daughter, Christina. We weren’t prepared, but what was worse, the medical community where we lived wasn’t either. Relentless seizures—more than one hundred a day—blew in like a whirlwind. The storm seemed to form out of nowhere. None of us saw this coming, doctors included. The painful truth was warning sirens had been blaring, but we failed to notice.

Desperate times require desperate measures. During the middle of that storm, Larry and I realized the truth in that statement. Below is the first of a series of excerpts from Good Morning, Beautiful, which chronicles our tumultuous journey :

The 727 banked, routing it northbound for Minneapolis. Through the window the wing lowered as stars hung in the clear night sky against the darkness. Some sparkled as a precious gem does when hit by light. Relief at the cloudless sky, rendering a smooth flight, didn’t come as it should. An inner storm was raging, bringing with it gusts of fear and panic. A tear slipped out from already exhausted eyes and began to run down my cheek. Glancing around, the passengers were reading or talking to the persons next to them. Not wanting anyone to notice, I nonchalantly brushed the tear away. Long, sleepless nights in the hospital left my eyes burning and rimmed in red. As I slid my finger into the hand of my tiny daughter, she moved hers slightly to accommodate. Looking more like an infant than the toddler she was supposed to be, below fine blonde curls, her face was thin and pale. Her sea blue eyes were open but showing no sign of what they were fixed on. She was still and quiet. Capped IVs ran into each arm and bruises lingered near them, as well as areas of unsuccessful attempts at placements and blood draws. Tiny veins were not meant for this.
 When the tall brunette flight attendant who had seated us before anyone boarded came by, I knew she was being kind by offering food. “Can your baby have anything?”

Holding back emotion, I thanked her and said no. It wasn’t just the special diet we were feeding Christina or the relentless seizures. Truth is, she had not eaten nor drunk anything on her own for weeks. First, she wouldn’t finish her meal. She gagged when my husband or I tried to force drops of formula into her

mouth with a syringe. The nurses also tried to feed her this way, without success. Prescribed much later than it should have, the feeding tube running into her nose held in place with tape was keeping her alive. The tube ran into a portable pump filled with her “special” formula, equipped to sling over my shoulder for transporting her. For now, it sat at the floor near my feet.

Daunting thoughts crept through my mind. Could there be a genetic disorder or cancer that has been missed? Why is this happening to us? God, this must be a cruel joke, after all we went through to have children. How could this be?

Closing my eyes, I held them shut in hopes this was just a bad dream. When they opened, flight attendants were picking up cups, and passengers chatted in the distance. It wasn’t a nightmare, but a blustery wicked storm, swirling life and everything we had known to be normal out of control. The term “failure to thrive” came more than once from the nurses who attended to her at the hospital where we fought to discharge her. Already hardened by previous misinformation, my husband Larry and I were not sure what to think of this latest assumption. Our hope was that the hospital in Rochester would be able to help our daughter, but it would be a while before arriving there. Once on the ground, there was still a two hour drive to make. Looking at my watch, I realized we’d be lucky to make it to admitting by midnight.