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.
Livy's Hope Blog
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.
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.
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.
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.
On December 15th, 2004 in St. Petersburg, FL, I not only saw the birth of my twin daughters Hailey and Livy, but I was also witness to the beginning of a journey for a remarkable mom. Hailey was born first and was a very healthy, typical baby. Livy had different plans in store. A little more than an hour after birth, Livy had her first seizure and went on to have several more seizures that day. The four of us flew to Boston for some specialized care at Boston Children’s where Livy was eventually diagnosed with a brain malformation. While Livy was at the hospital, Allison spent every day with her. I flew back and forth on the weekends but only dealt with a portion of what Allison dealt with; the endless parade of doctors, nurses, medications and foreign medical terms. It was so bad at one point, they asked us if we wanted to sign a DNR (do not resuscitate). She was a new mom with twins who was supposed to be relishing in the birth of her girls, not deciding what treatment to try next for something we knew nothing about. She lived two different lives; getting to know Hailey as a newborn when outside of the hospital and not knowing if she would ever be able to truly meet Livy.
Our family was finally reunited for good in September of 2004. Livy’s path home took her back to All Children’s Hospital in St. Petersburg and then through a nearby Hospice house. Over the next four years, there were frequent hospital stays, doctors’ appointments, therapy sessions, insurance battles and two major brain surgeries. The second procedure disconnected the left side of her brain in an attempt to stop the 100 plus seizures she was having per day. Since her second surgery, Livy has done considerably better. However, she is a very complicated child who requires full time care for all of her needs. Allison made the decision that she would be the one to take care of Livy. I remember her saying on multiple occasions, “No one will take care of her like I will.”
Most of us will face a traumatic experience at least once in our lives. Where we feel we can no longer keep going. Where every day seems like it is a fight just to get through. We wish our days away hoping for an answer. Am I on the right path? Am I strong enough to make it? How will I keep going? We have been in that very same position with Livy a number of times. For years, we didn’t know how we could function in a normal capacity ever again. We were angry. We were heartbroken. We were devastated, confused and lost all at the same time. And most of all, we were so sad for Livy and all she went through.
Our last major hospital stay due to uncontrolled seizures was in April of 2010. It had been a year since Livy’s hemispherectomy operation. We were gradually starting to see her seizures get worse. We asked ourselves, “What are we going to do this time? She can’t have any more surgeries?” Allison called me from the pediatrician’s office since we always follow protocol to make sure nothing else is going on. Shortly after the doctor assessed her, he said, “Get her to the hospital, now!” and off we went.
Today, March 26th, is World Wide Purple Day, 2014. It is a day when people from around the world don their purple to support those with epilepsy and to raise awareness. It is a day when we remember all those who have lost their battle with the disorder. For those warriors that continue their struggle each and every day, we want you to know that you are not alone and that we will fight with you.
Livy was up early this morning at 7:15. I let her know that it is Purple Day and that I am wearing purple for her. I reminded her that I will do everything I can to help her and that I will always be there for her when she needs me. I made that promise to her years ago and it is one I will keep for as long as I am living. I also told her that I am wearing purple today for her friend Taylor and her family who are currently having a very difficult time. Her friend Georgie and his family who have been through so much. Her friend Gabe and his family who deal with dozens of seizures daily and her friend Anna and her family who struggle every day.
I spent this past week with Livy at another intensive therapy session. In the past, she was able to endure the typical three week course but we have had to scale down to one week at a time. She was fatiguing after about a week and half and with the exhaustion came increased seizures. No thank you.
This week we met a very cool kid who was going through an intensive session as well. I have seen many kids endure these very difficult workouts and each time I find myself in awe. We are talking three hours a day, five days a week for three weeks straight. I see the pain in their faces and hear the ache in their voices. These kids are pushed to their limits to do the simple tasks so many of us take for granted.
When I look into Livy’s eyes, I know more is going on than there seems to be. She can’t talk or communicate in the typical fashion, but she has her own way of letting us know how she is feeling. Most of the time, we are kissing her and hugging her. So her smile lights up the room. She is just like any kid who feels the genuine love of her family. When she is uncomfortable or hurting, she tells us by her sounds as well as increased seizure activity.
I often put my head against hers and whisper, God, please let me hear what she is thinking. Just this once. My prayers have yet to be answered but if I really listen to her sounds and look at her facial expressions, I can almost get there. Sometimes my imagination gets the best of me. Is she scared or confused. Does she feel lonely or trapped? Does she want to say something but her brain won’t let her get the words out? Does she want to tell us she loves us?
I am still amazed by the fact that it only takes a simple smile or a kiss to bring me back to when Allison and I first met. After 15 years of marriage and a total of 18 years together, it is easy for one to forget what it was like all those years ago. But we like to keep those memories alive. We still reminisce about what we did before having kids. What did we do with all our free time? Life was so simplistic back then. But what we realize is that our lives now are much more full of love and purpose than we ever thought possible.
This year has been especially crazy. Just living life, working and Hailey and Livy’s daily schedule (especially all Livy’s doctor’s appointments and therapy sessions) can be hectic. But we have also been running our Livy’s Hope For A Cure campaign along with our regular Livy’s Hope work. Not to mention, our house has been undergoing renovations to make it more handicap accessible. Allison has often said that if we don’t kill each other by the time this is all done, it will be a miracle. As we are finding out, it takes an amazing commitment to run a six month fundraising campaign.