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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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Helping My Sister

Hi. This is Hailey. For those of you who don't know me, I am 9 years old and I am Livy's twin sister. I wanted to talk to you today because I have something very important to say. I want to tell you about Livy and some of her friends.

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Guest — Cindy and Jim Karwowski
Such a beautiful and inspiring declaration of Hailey's love for her sister and others!
Friday, 18 July 2014 13:47
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Lemonade for Livy: The Path to Peace

Ever since the girls were born, I, as a father, have constantly struggled with finding a purpose for what Livy goes through. At first it was the never ending seizures and brain surgeries. Then a broken leg, then precocious puberty and then a fractured heal. Now it is her permanently dislocated hip which causes her discomfort each day. Watching the look of pain on her otherwise glowing face is torture. For a little girl to go through so much doesn't seem fair.

Over the last nine years, I have been able to focus on various projects and my daily routine to keep me sane. I am an avid gym rat which is where I have blown off a large amount of steam when it comes to my squabbles with God, doctors and epilepsy. The latter bearing the brunt of my fury. When those we love are hurting, it is human nature to want to blame someone. But I have run out of blame. After tens of thousands of seizures, blaming someone or something seems futile and a complete waste of energy.

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Recent Comments
Guest — Gary Parrish
I am praying for you, Allison, and hope that you find the peace you are searching for.
Friday, 13 June 2014 06:40
Guest — Anita Morrison
Thank you for sharing your story. My developmentally disabled sister has suffered with seizures since infancy. You are right in ... Read More
Friday, 13 June 2014 12:27
Guest — Geri Booth
What a beautiful piece, Jon. You and Allison are my inspiration. You have inspired me to not give up and to give back. My life has... Read More
Friday, 13 June 2014 16:31
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