We only have 15 states left to turn purple! There is less than two weeks left until Lemonade for Livy weekend 2015 on July 24 – 26 so please click here to register your stand or party if you have not yet done so. Here is the list of states:
If you know anyone living in one of these states, please share the campaign with them so we can turn every state purple.
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.
As we get closer to Lemonade for Livy weekend and turn states and countries purple and add lemons to our maps when people register, it often feels exciting, almost like a game. But I assure you, it is incredibly serious. 10's of millions of families go through the same thing. They witness their children having seizure after seizure and they feel helpless. Millions more adults with seizures struggle to live the lives they want to lead. For those families and individuals, we are here, fighting for you. We have seen enough and can no longer accept the status quo.
This campaign is about hope and inspiring people to do something for others. But it is also about fear, uncertainty, anger and stress. All of the emotions that arise when dealing with seizures.
I am tired. I am tired of watching my daughter live her life complicated with epilepsy and all that goes with it. I am tired of the emotional drain. I am tired of putting on a smile and telling people things are okay. They are not. How can this be normal? We tell ourselves it is normal because we have to watch Livy constantly go through it. It is our defense mechanism. Some days are worse than others and we are reminded how fragile life truly is.
Most of all, I am tired that not enough is being invested to find answers. The epilepsy community is 65 million strong and has millions more family members and friends to support them. Together we can make a real difference. Please don't wait for someone else to do this for you. Get involved today. That choice is one that you control.
If you would like to purchase a Lemonade for Livy t-shirt or tank top to wear on the day of your event, we suggest you purchase one sooner than later. After ordering, they arrive at your house between 6 - 10 business days (in the USA). Please click here to see the different styles available.
To make sure you receive emails from Livy's Hope in your inbox, please add email@example.com to your email address book or contact list. If you haven't done so yet, please like our Facebook page at www.facebook.com/livyshope. We look forward to sharing news about states and countries as people register and as Lemonade for Livy grows. With your help, we will bring the world together to make a stand against epilepsy!