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You're Kidding Me...Right?

I looked down at Hailey's face as she peered up to me with very serious eyes. Her point was clear. We were going to raise $1 million dollars for the Epilepsy Foundation. "You're kidding me...right?" I asked. She wasn't kidding and she was going to make me believe it. Jon and Hailey asked, "Can we count you in?"

A lot of people are going to think we're crazy. I know this because I thought Hailey and Jon were crazy when they told me what we were going to do. At her age, she does not understand the concept of $1 million dollars. But Jon, he knew what he was getting us into. He and Hailey always talk about grand schemes and outrageous ideas. They talk about inventions, business ideas, ways to combine foods. They are dreamers. They are believers. They are the kind of people that think anything is possible.

Hailey was just interviewed by Lissette Campos in this video on our local ABC news about Livy's Hope For A Cure. She is only eight years old and is working to make a difference. Your kidding me...right? No, she is not kidding. If she can do it, we can all do it!

Crazy. That's all I kept saying. But the more I thought about it, the more I understood. I am crazy. I'm crazy to keep going on day after day NOT doing something. Livy needs us to do something.

There were times I almost went over the edge, actually went crazy, when Livy was at her worst. I remember vividly, one day when I sat at Livy's hospital bedside. She had been there for quite some time. She was having seizure after seizure after seizure. The doctors were attempting to find something to control them and in the meantime trying to capture each seizure on an EEG (Electroencephalogram - measures brain electrical activity). Livy's head had been bandaged tightly with EEG leads all over it. The EEG technician had handed me a button connected to the machine. I was very familiar with this button because I had used it in the past. Each time Livy had a seizure, I was to press the button to record it. Then they left us alone. Livy had a seizure. I pressed the button. Minutes later, she seized again. Press button. Again. Press button. And again. This went on for hours. I...kid...you...not. Even as I type this I can feel myself tensing up. That day, I really thought I would go crazy. I sat there staring at Livy, helpless, my only job was to push that stupid button. Over and over and over. You're kidding me...right?

That's how I feel when I sit and hold Livy during a long seizure. Long, as in 45 minutes or more. I just sit and hold her tight, whisper in her ear, "I love you Livy. You aren't alone. Mommy is here." I have no idea if she hears me. She just stiffens, holds her breath sometimes and shakes. That's crazy.

That is the only way to describe the amount of entries in our piles of "Seizure Journals". Jon and I kept track of the endless seizures Livy has had. We would begin the day by entering the date at the top. The first entry started early, right when Livy would wake up. We would mark the time and sometimes we would provide details about the seizure - arms raised up, eyes shake, hold breath, jerking, drooling, vomiting. Other times we just wrote "S". After a full day, the S's filled the pages...50, 100, sometimes more. At the hospital, in the middle of the night, when I could barely keep my eyes open, I would stop writing them down. I would hear her and just hold up a finger. Once all my fingers were up, I would write down "10". I couldn't keep up and couldn't keep track. Too many seizures. You're kidding me...right?

Then there was the time after Livy had her hemispherectomy (the left half of her brain was disabled). Before her operation, we had already spent more than a month in the hospital trying to control her nonstop seizures and were running out of options. She was only hours post surgery and, unbelievably, still having seizures. I had not slept in days, sick with sadness and heartbreak. Jon had taken over at the hospital and I was at the Ronald McDonald House down the street. It was late, and I took one look at the clock to see what time it was and my heart started racing and I couldn't catch my breath. I was scared to death and called Jon. He told me to call 911. The ambulance came and rushed me to the ER. They rolled me into the waiting room in a wheelchair and left me there with an IV stuck in my arm. They assured me I was having panic attacks and that I would be fine. My arms stiffened into 90 degree angles and I couldn't move them. I sat there alone as Jon watched over Livy in the intensive care unit just floors above. He was running back and forth not knowing who to be with. The situation was surreal. Just plain crazy.

A lot of those horrible times have faded from my memory. Not completely, but enough so I can function and try to enjoy the calm. The memories are still there, pushed back far in my mind. Sometimes just one unusual movement from Livy can bring them all back again. I really do try to forget.

So, I am ready to embark on this journey. To raise $1 million dollars for the Epilepsy Foundation for research to find a cure. I want to believe and dream and have HOPE. We know we can't do this alone. But, we do know that Livy deserves something better. And the millions of people who deal with this horrible disorder deserve better. No parent, spouse, sibling, child or friend deserves to watch their loved one endure these debilitating seizures.

I want to believe there will be a cure. Am I crazy? Maybe, but if that's what it takes, count me in.

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Livy's Hope For A Cure

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Comments 6

Guest - Suhail Bury on Thursday, 13 June 2013 09:12

Wow! That's amazing! Hailey is such an example. I encourage my kids to help with fundraisers and I had shown Nathan some of Haileys videos so he can get ideas. Actually he is doing his first fundraiser for The American Vitiligo Foundation. Nathan has Vitiligo and it was after watching Hailey's lemonade video he decided to do it!

Wow! That's amazing! Hailey is such an example. I encourage my kids to help with fundraisers and I had shown Nathan some of Haileys videos so he can get ideas. Actually he is doing his first fundraiser for The American Vitiligo Foundation. Nathan has Vitiligo and it was after watching Hailey's lemonade video he decided to do it!
Allison Scheinman on Thursday, 13 June 2013 09:30

That is wonderful that Nathan has been inspired to do a fundraiser! Kids are so amazing. They have so much strength and will and a true desire to help others. Please let me know more about his fundraiser. I will read your comment to Hailey and I am sure she will be thrilled. Thank you!:

That is wonderful that Nathan has been inspired to do a fundraiser! Kids are so amazing. They have so much strength and will and a true desire to help others. Please let me know more about his fundraiser. I will read your comment to Hailey and I am sure she will be thrilled. Thank you!:
Guest - Gary Parrish on Thursday, 13 June 2013 09:28

Great post, Allison! Just a small glimpse into the pain and heartache that you all have been through and it touches my heart. I have so much admiration and respect for all of you. Thank you, for having the courage to share something so deeply personal.

Great post, Allison! Just a small glimpse into the pain and heartache that you all have been through and it touches my heart. I have so much admiration and respect for all of you. Thank you, for having the courage to share something so deeply personal.
Guest - Allison on Thursday, 13 June 2013 10:46

Thank you Gary! We realize that we were meant to do something important and it means so much to us to have so much support.

Thank you Gary! We realize that we were meant to do something important and it means so much to us to have so much support.
Guest - Carol on Thursday, 13 June 2013 11:06

I'm spreading the news....lots and lots of hugs,

I'm spreading the news....lots and lots of hugs,
Guest - Lu Paletta on Friday, 14 June 2013 09:19

Thank you for sharing such a personal story. I have said a prayer for you and your family. I admire your daughter's goal of raising $$ for Epilepsy. I too am trying to raise awareness of the Epilepsy Foundation and the great work they are doing. Some just needs to go to http://www.lupaletta.com and click VOTE in my goal of raising up to $5000- it would be most appreciated.

Thank you for sharing such a personal story. I have said a prayer for you and your family. I admire your daughter's goal of raising $$ for Epilepsy. I too am trying to raise awareness of the Epilepsy Foundation and the great work they are doing. Some just needs to go to www.lupaletta.com and click VOTE in my goal of raising up to $5000- it would be most appreciated.
Guest
Monday, 10 August 2020

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