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Livy's Hope Blog

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Epilepsy, I Am Tired Of You

The other morning, I was reminded all too well just how unpredictable epilepsy can be. Livy began having seizures at 6:00 AM and didn’t stop until 8:30 AM. By the time she fell asleep, she had close to 50 of them…50 in less than 3 hours. I sat there with her, wishing them away and then praying them away. “Please let this be the last one. Please, for her sake!” Waiting...then shaking again and again.

As I was stroking her hair to comfort her, I felt the scar in her scalp and the groove in her skull from her brain surgeries. They are in the past but they are also very much in the present. I was there in the moment, sad, so sad for her. She is just a child. After each seizure, she let out a small soft sound as if to say, “Daddy, please make them go away.” The look in her eyes brought me back to the NICU the morning Livy and Hailey were born. It seems we are moving ahead in many areas of our lives but we always have one foot firmly entrenched in the day our lives would change forever ten years ago.

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Recent Comments
Guest — Gary Parrish
My heart breaks for precious little, Livy, and it breaks for the rest of your amazing family, Jon. I will continue to pray for all... Read More
Friday, 24 July 2015 09:11
Guest — Harold Lampert
We're happy to have opened our stand yesterday and proud to stand with you. Your posts serve to remind me that any "stress" I am f... Read More
Friday, 24 July 2015 14:56
Guest — GARVAN MAIREAD
We offer Cash & Asset Backed Financial Instruments such as Bank Guarantee and Standby Letter of Credit (BG/SBLC) for lease and sa... Read More
Sunday, 15 March 2020 20:27
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A Father's Promise: Making A Stand Against Epilepsy


I promise. Two little words that we so often over use. I promise I will wash the car. I promise I won’t tell a secret. I promise I will be home early so you can go out with your friends. I promise. But what does that really mean? It means a commitment to do something. It means someone trusts you to follow through on your word.

I made a promise to Livy many years ago. It was no small promise and is one that has utterly changed my course in this world. I promised to do whatever I could to help her and to find a cure for epilepsy. In 2009, she was in the hospital with uncontrolled seizures. I sat there watching the nurses put Ativan in her IV. Then I watched as she began seizing again only a half hour later. This went on and on for two months until she eventually received a hemispherectomy; an aggressive procedure that disconnected the left side of her brain. It was her second brain surgery. She continued to have seizure after seizure for another month until we finally regained control. That hospital stay seemed like an eternity. I left the hospital a different person on many levels.

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Guest — Lampert's Therapy Group
Jon, we're happy and proud to stand by you and help you with your promise to your beautiful daughter. You and your family are an i... Read More
Friday, 19 June 2015 10:06
Guest — #Guest
hello can i have your personal email address?
Saturday, 30 July 2016 17:57
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