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.
That is why I started burying my emotions in Livy’s Hope. For me, it has been extremely therapeutic. Helping others who are in a similar situation is incredibly gratifying and fills my heart with hope. It allows me to build a wall around the intense feelings of anguish I choose not to relive every time Livy has another seizure.
I only wish Allison had the same ability. We were discussing the other day how we have moved in somewhat opposite directions. She was always the optimist. Joyfully moving from one day to the next. But Livy’s medical issues have taken a major toll on her outlook. I have often talked of the piece of us that has been lost after witnessing what Livy had to endure in her many hospital stays. I fill my empty space with inspiring videos, blogs and events and am intent on finding happiness. But for Allison, she has not yet found that place she can go to release the grip of fear that Livy’s experiences have created. I see her tormented by what happened and what could possibly happen again. I pray every day that she will find joy and will be able to silence the intense calls from the past.
As we start Lemonade for Livy, there is much excitement of how it could all turn out. Hailey and I are enthusiastically engaged and can’t wait to turn each state purple. We believe that we can do it and are determined to involve the entire country. I think in the end, Lemonade for Livy is a project not only to fund epilepsy research, thereby helping Livy, but it is a way for me to show Allison that life is still amazing. I want to show her that there is hope. I want to show her that she is not alone in this fight. I want to show her that she has the power to use her experience to help others. I may not be able to walk her down the path to a greater peace; the place that continues to evade her. But my Father's Day wish is that Hailey, Livy and I can perhaps show her where to start.
If you or anyone you know would like to participate in Lemonade for Livy from July 25 - 27, I would be truly grateful. Livy is one of 3 million people in the United States that have epilepsy. There are millions more who bare the emotional brunt of caring for those with the disorder. My family has seen some of the worst affects of epilepsy and I know that there are many families with similar stories. Lemonade for Livy will give the ability to those impacted by epilepsy to work as one, to speak with a unified voice and to make progress toward finding a cure. For more information, please visit http://livyshope.com/index.php/giving-back/lemonadeforlivy.
Thank you for sharing your story. My developmentally disabled sister has suffered with seizures since infancy. You are right in that every parent handles the emotions (anger, guilt, frustration, etc) in different ways. My sister was born in the 1960's, and my father was not involved in the day to day care of her. He was from the generation of men who focused on their work and providing for their families financially. He was unable to cope with his feelings after her birth. It is wonderful to see fathers so involved with their children and actively finding ways to not only deal with their emotions, but to push for research and change. God bless you and Happy Father's Day.
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 changed in so many ways since meeting your beautiful family.
Allison, I know that it is difficult to understand why our children must endure what they do. It is human nature to question "why us".
I find peace in knowing that this is all part of God's great plan. We were chosen to mother these beautiful angels. We are being brought together to spread hope, to change lives. Allison, you are changing lives...for the better.
I love you my sweet friend. Sending a hug.
How much your story and struggles pull my heartstrings I can't express. You are always in my thoughts and prayers.