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An Angry Letter

Dear Epilepsy,

I have been wanting to write to you for some time now. It's only just recently that I was reminded again how you can sneak up on a person without warning. You have been a part of our lives for almost eight years now but you still seem a stranger to us. Just when we think we know you and feel like we can control you, you come back showing your ugly face.

This past weekend you surprised us when Livy woke from a deep sleep. We are used to seeing you in a more calm and milder fashion. But this weekend you were stronger and took Livy from us briefly. You scared us and reminded me how anxious you make me. Memories always come flooding back, bad memories, when you change on us. We felt we had you under pretty good control, and may still have, but for that moment, I felt we had lost hold.

You are such a large part of our lives but I try to ignore you and not let you define our child. So many times in the past you have taken hold of our Livy and taken her somewhere, away from us. We fought back at you numerous times with medications and surgeries. You have been weakened, so we hope. But it is always an unknown and we know you can return at any time. We will continue to fight against you and learn new ways to do so.

You plague so many - 65 million worldwide. Why you chose our little one we will never know. It seems you have taken so much from her. But we know better. You can never take that glowing light that shines around her. That love that others feel towards her. The lessons we have learned from her. The inspiration that so many have come to feel...because of her. She will prevail and we will continue to hope.

Livy's Mom

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Comments 6

Guest - Debbie Hadlock on Wednesday, 22 August 2012 13:13

And those of us who follow Livy's story and your family's journey will not allow her to be defined by this illness. As always, your thoughts, actions, and love for Livy are more powerful than any of the difficulties all of you have had to endure. All of you are an inspiration to so many! Stay strong, smile, and hold on to the love and compassion you have shown so many times. Hugs, hugs, and more hugs to all of you!!!!!!

And those of us who follow Livy's story and your family's journey will not allow her to be defined by this illness. As always, your thoughts, actions, and love for Livy are more powerful than any of the difficulties all of you have had to endure. All of you are an inspiration to so many! Stay strong, smile, and hold on to the love and compassion you have shown so many times. Hugs, hugs, and more hugs to all of you!!!!!!
Guest - Stavria on Wednesday, 22 August 2012 14:36

Well said! If it were a petition we would sign it! We always see an increase of Anna's seizures at the beginning of the school year. It's all so overwhelming. Hugs to Livy!

Well said! If it were a petition we would sign it! We always see an increase of Anna's seizures at the beginning of the school year. It's all so overwhelming. Hugs to Livy!
Guest - Andrea Guarino on Wednesday, 22 August 2012 14:49

Livy is a light that will always shine. Epilepsy is cruel and mean, but Livy is strong and out-smarting it. Thank God for her and for you. Together, you are all still shining and nothing, not even epilepsy can ever take that away.

Livy is a light that will always shine. Epilepsy is cruel and mean, but Livy is strong and out-smarting it. Thank God for her and for you. Together, you are all still shining and nothing, not even epilepsy can ever take that away.
Guest - Gary Parrish on Wednesday, 22 August 2012 15:14

Oh my gosh, Allison! My heart lept into my throat when I read your words, " took Livy from us briefly". I've never actually met you but yet you all feel like family to me, and I couldn't bear the thought of Livy leaving us and it made me think of the constant fear you, Jon and Hailey must live with every single day. My heart goes out to each of you today, and always...especially Livy.

Gary Parrish

Oh my gosh, Allison! My heart lept into my throat when I read your words, " took Livy from us briefly". I've never actually met you but yet you all feel like family to me, and I couldn't bear the thought of Livy leaving us and it made me think of the constant fear you, Jon and Hailey must live with every single day. My heart goes out to each of you today, and always...especially Livy. Gary Parrish
Allison Scheinman on Wednesday, 22 August 2012 15:27

Gary, I didn't mean to cause alarm. When I stated that the seizure "took Livy from us briefly" I was referring to how she becomes unaware of what is going on around her and is not responsive. It is as if it is not her. Most times during her typical, milder seizures, she is still aware and alert to what is happening around her. A lot of the time she can still respond by smiling to us during them. So sorry that it sounded worse that it was!

Gary, I didn't mean to cause alarm. When I stated that the seizure "took Livy from us briefly" I was referring to how she becomes unaware of what is going on around her and is not responsive. It is as if it is not her. Most times during her typical, milder seizures, she is still aware and alert to what is happening around her. A lot of the time she can still respond by smiling to us during them. So sorry that it sounded worse that it was!
Guest - Karen Jacobs on Wednesday, 22 August 2012 22:22

Hugs and Prayers for ALL of you.

Hugs and Prayers for ALL of you.
Guest
Tuesday, 22 September 2020

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