Livy's Hope Blog
Fatherhood has been both the most rewarding and most difficult experience of my life. I expect that many parents who have kids with special needs or who are battling diseases or disorders feel the same way. I have such a sense of pride for what my 12-year-old twins Hailey and Livy have become and the time they have spent giving back to others. Their relationship is a wonderful example of how the love between two sisters can be a source of tremendous inspiration.
A few weeks ago, we had an appointment with Livy’s neurologist. Livy has had some longer seizures lately and we wanted to discuss our options and revise our plan for how to handle them. Livy is currently on four antiepileptic medications and our options are limited. As I sat there holding Livy in my arms, I thought how surreal the journey continues to be. Most of our time is focused on Livy’s epilepsy because we must put out the biggest fire first. Unfortunately, it leaves us with less time to dedicate to her other disabilities. When the doctor came into the room, we told her about Livy’s recent struggles. We then went through the list of medications she is taking and what plan we should put in place. Our options…1, increase medication A to this level…2, increase medication B to this level…you see where this is heading.
After going through all four, the next comment from Livy’s doctor was “We really don’t know how all of the meds interact and the effects that can have.” Did I mention that the known side effects of the medications she is on are nausea, vomiting, upset stomach, diarrhea, constipation, tremors, slurred speech, loss of balance or coordination, rash, headache, mental slowness, trouble concentrating, confusion, dizziness, drowsiness, nervousness, sleep problems (insomnia), loss of strength and energy, anxiety, nervousness, irritability, depression, drooling, restlessness, jerking movements of the eyes, shaking of the hands, and memory problems. These are just the more common side effects, not the serious side effects.
What is it about babies’ feet that are so adorable? Is it their tiny toes, the pure baby smell, or the fact that they are completely unblemished? When Livy was born, the nurses created a foot impression ornament for us. They gently placed her foot in plaster, added her name to it, and painted it pink. Since the girls were born just before Christmas, it was a perfect addition to our tree. It is still one of our favorite ornaments and hangs proudly each Christmas, a reminder of how much Livy and my family have been through over the last twelve years. Livy’s pink foot is once again getting ready to make an appearance the weekend after Thanksgiving.
I have played This Little Piggy with Livy hundreds of times. “This little piggy went to the market, this little piggy stayed home…” But she is still yet to laugh when I tickle her. Instead of smiling, she gives me a look as if to say, “Dad, what the heck are you doing? Knock it off!” I bet that is what she would say about many of my jokes if she could tell me. But none the less, I love playing with her toes. She is still my baby in so many ways.
When I picture a prison, I see a cell with three walls and bars. I see the loss of freedoms to go where you want and when you want. I see a very structured life lived by the clock…time for breakfast, time to go into the yard, time for work responsibility. When the lights go out, you are alone. A life sentence for a crime one didn’t commit must be awful. There are continuous questions of why me. There are constant legal battles for retrials. And there is the acceptance that the life one dreamed about will be different. Living this prison life is sure to test the emotions of any sane person.
Having difficult to control epilepsy is very much like living prison life for a handful of reasons. Medications must be given at the same time every day. The freedom to complete activities is often restricted based on the risk of having a seizure. There are many legal battles being fought for those with epilepsy including inequality, discrimination, and the legalizing of cannibidiol as well as rescheduling cannabis so it can be more widely studied. People with epilepsy are innocent. They didn’t do anything that deserves epilepsy. And for many, it is a life-long struggle. But there is also hope.
When Lemonade For Livy started, we had no idea it would grow to the national initiative it is today. The campaign has come a long way since we received a call from a mom down the street explaining, “Megan and Madison just went outside and raised $80 for Livy at a lemonade stand. They called it Lemonade for Livy.” Much has changed since that first stand. Countless hours have gone into getting the word out about funding epilepsy research for the Epilepsy Foundation of America and to telling the story of what the campaign means to us and to the community. There have been days, or should I say very, very late nights when sleep was so enticing and the hours rolled by…1 am, 2 am, 3 am… Even during times when Livy wasn't doing well. But we kept pushing forward.
Looking back now, every moment has been worth it on many different levels. Behind every tick of the clock, there was the hope that if we can just register one more stand, if one more person can share the story, then we would be that much closer to a cure; a cure for Livy, a cure for the 3 million people in the US and a cure for the 65 million people worldwide living with epilepsy.
11 years ago when Hailey and Livy were born, we started a journey that challenged us in every way imaginable. Livy's epilepsy and other disabilities tested us physically, emotionally and spiritually. Relationships with friends ended and our most sacred bond of marriage was strained to its limit. The biggest reason for us was the feeling of being alone and isolated. We felt like we were stranded on a deserted island with no escape. Was this how our lives were going to be forever? Would we always be scared to leave the house? Is there no one we can turn to for support?
It took a long time for us to get used to our new lives and to find strength in sharing our story and helping others. But that wouldn't have been possible without the support of some incredible people. One such person is Tracy, who we met several years ago when the organization I Run 4 was just starting out. The purpose is for a runner to be paired with a child with disabilities who is not able to run themselves. Athletes tend to be motivated individuals and knowing that every step is for another person can keep someone going when they think they have gone as far as possible.
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.
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.
Happy Cyber Monday! Hailey has a special message for you. She's designed a new collection of bracelets for the holidays.
Please visit our shop at http://shop.livyshope.com/ and take a look. All of the "Giving Back" projects at Livy's Hope including the Livy's Hope Kids Crew, Livy's Hope For A Cure/Lemonade for Livy, Jewels of Hope and our Care Notebooks are funded by the profits from sales in our store. We are not a non profit so we rely heavily on merchandise sales to continue initiatives which impact many people in the community. Giving to others is what we do at Livy's Hope and with your help, we will continue to improve the lives of children with medical needs and their families.
Last month, we took part in an educational meet and greet for the “Florida Compassionate Medical Care Act of 2014” at our local library. The law authorizes physicians to order low THC cannabis for use by specified patients. The cannabis is converted into a medical hemp oil or cannabidiol (CBD) most popularly known as Charlotte’s Web. The resulting product has no psychoactive effect which is commonly associated with marijuana. It has shown to be extremely effective in reducing seizures.
Holley Moseley, the mom who worked tirelessly to help move the bill to passage in Florida, presented the status of the law and where it is in the process. For those who are new to the law, it was passed in July 2014 and is slated to take effect in January 2015. The law opens the door to bring a life saving option to children in Florida who have severe epilepsy causing intractable seizures. Unfortunately, the lottery system that will select nurseries in Florida to grow Charlotte’s Web is now being challenged in court. A handful of growers think the lottery system is illegal. From a business and safety perspective, I understand their concerns. Their issue focuses on making sure the product is the best it can be. But one has to wonder. Is it all about the money or bogging down the law in the courts to maintain the status quo?
We would like to thank everyone for participating in and supporting Lemonade for Livy! The excitement leading up to the weekend and the turning of the last handful of states purple was amazing. There was incredible energy throughout the country during Lemonade for Livy as we came together to spread epilepsy awareness and raise money for research.
The voting for this year’s most creative stand has concluded and here are the winners:
A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister's love and a mother's devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so at www.livyshope.com/lemonadeforlivy. And please share with others so that we can spread epilepsy awareness.
This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy's epilepsy has changed me. And now it is time to fight back.
I had to take a moment out of this exciting, crazy momentum and just stop and confess.
At the beginning of this "Lemonade for Livy" campaign, I was the skeptic. Jon had mentioned in a previous blog that I had lost some of the positive beliefs that I once had. These past nine years have been tough on me and my soul. I was always the optimist and could always find the good in every situation. I wish I could say that I still felt that positive flow of energy every day, but that part of me has been hidden for some time.
This past week, we sent out an email to family and friends. I thought it was important to share since many of you have been following our story from the very beginning. For years, we have watched Livy struggle with epilepsy. We have shed many tears and experienced tremendous heartache as she courageously fought through episode after episode and multiple surgeries. In the end, what Livy needs is a cure.
The 4th of July is a time to celebrate America’s history and the freedom that we enjoy. That freedom has not come without a price. Millions have lost their lives defending the very concept of freedom. But with freedom comes great responsibility. And quite often, we fail in protecting our most basic beliefs that all men (people) are created equal. Our culture is full of examples where we have abused the very ideals that set us free.
What is common about freedom in almost every sense of the word is the spirit of hope that drives a person to want to be free. Robert F. Kennedy said, “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope...build(ing) a current that can sweep down the mightiest walls of oppression and resistance.” Entire movements begin by a simple act of kindness or an individual’s desire to help others. Regardless of how they start, people follow them because they are inspired to do something that matters.
We have no idea what life for our family would be like if Livy hadn't been born with epilepsy. From the moment she took her first breath, she was destined to change what we perceived to be our path in this world. We never knew what epilepsy could do to someone or to a family.
A seizure was something we saw in shows like ER or House when people were in accidents or had brain tumors. We didn't know the statistics such as 1 in 26 people will develop epilepsy or that there are 3 million people in the United States and 65 million people worldwide that have epilepsy or that two thirds of people with epilepsy don’t even know the cause. We didn't know that an estimated 50,000 people in the United States die each year from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. We didn't know.
Yesterday, we were interviewed by actor Adrian Paul from the Peacefund which has a program on LATalkRadio.com. Hailey answered questions about Livy, Livy's Hope's recognition in Peacejam's One Billion Acts of Peace and the Livy's Hope Kids Crew. The Peacefund named Hailey and Livy their Heroes of the Week back in November and wanted to have us on the show to discuss everything we are doing.
It is amazing to see Hailey at nine years old talking about topics that are well beyond her years. She seems like an old pro and always seems to impress us. Just when we think she may falter, she turns on her charm and puts on a display.
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.