Livy's Hope Blog
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.
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.
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.
Hi. This is Hailey. For those of you who don't know me, I am 9 years old and I am Livy's twin sister. I wanted to talk to you today because I have something very important to say. I want to tell you about Livy and some of her friends.
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.
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.
What an amazing year it has been! We never could have imagined we would have been able to accomplish all that we did in one year's time. The last few months were particularly busy and seemed to go by in a flash. Livy's Hope has made such a difference in our lives and we hope in the lives of others as well. I have a feeling this is only the beginning of something bigger and more inspirational.
We are excited to share with you that our video "I Am Hope" for the Livy's Hope For A Cure campaign has been chosen as a finalist for the WEDU Be More Awards! The ceremony will be held on February 20th in Tampa. This is a wonderful honor and we are so proud to be among the finalists.
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?
August is the month of AUCTIONS for Livy's Hope For A Cure! We are asking people to create something original or find something they no longer want and auction it on eBay or sell it at a yard sale. Then, donate the money to help fund epilepsy research.
Hailey has created this beautiful landscape of the Gulf of Mexico viewed from Dunedin, FL. The bidding begins today and ends in three days. Don't miss your chance to win this artwork and at the same time help the Epilepsy Foundation to fund research for a cure! Click here to visit the auction.
It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.
After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.
Tomorrow, March 26, is Purple Day! This day was started to support epilepsy awareness worldwide.
Would you please consider wearing purple in honor of this day and for those like Livy that have epilepsy? We are offering a special contest too! Take a photo of you and your friends or family wearing purple and share it on the Livy's Hope Facebook page. Hailey and Livy will choose their favorite photo and we will send you a set of Hailey's "Art by Hailey" notecards!
Livy's seizures increased dramatically Friday evening and she was taken to intensive care. She had been given Ativan multiple times and also a dose of Diastat. After no success, the doctors gave her a loading dose of Dilantin and Depakote. She finally settled down around 5am on Saturday. The rest of the weekend she was pretty quiet. With the addition of all of these new medications she tends to be very lethargic and not at all herself.
She had a flurry of seizures around 9:00 last night. Another dose of Ativan put her to sleep and she slept, as far as I could tell, all night long. She woke this morning with another shorter and milder flare up and she did not require another dose.
Summer is in full swing and we are all keeping very busy. Livy has been attending the ESY (extended school year) program at her school. It is a shortened day and only four days a week but it allows her to keep working on her skills so they are not lost over the summer break.
We had a wonderful presentation at the Family Cafe in Orlando! We were a bit worried about Livy because the day before she woke with a long seizure and slept most the afternoon. But it all went off without a hitch and she did beautifully. Jon is working on the video and hopes to have it up soon. It was a very positive experience for all of us and we met some wonderful people. Hailey had a blast the entire weekend. We hope to do this again next year.
Parents of children with disabilities have been entrusted with unusually challenging situations. Most if not all at one point or another have woken up one day and thought, "How am I going to keep doing this?" We often ask ourselves during extended hospital stays, "How did my life get to this point?" When Allison and I were at Shands Hospital in Gainesville during one of Livy’s many long stays, I used to look out the window at the road leading away from the hospital and imagine just driving off into the sunset. When we were at All Children’s Hospital in St. Petersburg, I would look out the window at the cruise ships passing by and think, “Those people are so lucky. They are going on vacation and don’t have a thing to worry about.” Believe me, I was so jealous. When we were at restaurants, I would watch families walk by, the kids running and jumping, full of smiles. Every family seemed to be the perfect family. And how easy I bet they had it. They could fly somewhere for a vacation or go to Busch Gardens and not have to worry about seizures or medications or if their children would ever walk or talk.
It took quite a while for me to finally look through a different window. I started by looking at Livy. Her eyes and smile are windows into a life that is pure and a source of unconditional love. Hailey’s personality is a window into how Allison and I deal with Olivia’s situation. Kids look through the windows of their parents’ experiences to try to make sense of the world. Hailey has learned so much about life in such a short period of time.
We would like to extend a big welcome to our new friends that attended our presentation at the Family Café Conference on June 16th in Orlando. Thank you so much for taking the time to listen to what we had to say.
I don’t know what it feels like not to be able to speak or to communicate how I am feeling. What if I was in distress but couldn’t tell anyone where it hurt? What if I was hungry or thirsty but couldn’t form the words food or water. What if I simply wanted to say thank you or I love you but my body didn’t allow me to vocalize it or use sign language to express it?
Hailey has created another bracelet in support of Livy's therapies. She finished beading the bracelets requested as a result of the Bay News 9 interview and got right down to something new. Please click here to bid on "A Petal's Wish". We are working on a video to show Livy in action during her last therapy session so stay tuned. Thanks so much for following Livy on her journey.