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Livy's Hope Blog

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Jonathan Scheinman

This Little Piggy

This Little Piggy

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.

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Jonathan Scheinman

I Run 4 Livy

b2ap3_thumbnail_TracyTattoo.jpg11 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.

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Jonathan Scheinman

Hope Is Freedom

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.

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Jonathan Scheinman

Don't Give Up. Give Back.


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.

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Allison Scheinman

Hope For The Rainbow

Yesterday was a very sad and difficult day for a very special family. Gavin, a little 5-1/2 year old boy, was taken so early from them and they said their good-byes. Thousands of people are now following Kate's blog Chasing Rainbows and have become one big, supportive, online family. Many of us drew Gavin's name on our hands to remember him. It was one small gesture to let his family know we were thinking about them and to remind us how fragile and precious life is. As the day went on, Gavin's name and rainbow faded on my hand. By this morning, it had vanished. I placed my other hand over where it had been and took some deep breaths. This little boy's story hits so close to home. A friend of mine said it perfectly, "It brings our greatest fears to the surface".

Shortly after Livy was born we were told she had a limited amount of time to live. It shook Jon and me to the core and we had no idea how to handle the emotions that came afterwards. In that moment, the hope of a beautiful childhood faded away. We went to Boston Children's Hospital seeking a second opinion, holding on desperately to the idea that the first doctor was wrong. Instead, the diagnosis was confirmed. We sat down with the Ethicist at the hospital and had the most surreal conversation about signing a DNR (Do Not Resuscitate) for Livy. We had come face to face with the gruesome fact that we were to decide her fate. It had actually come to that and we were beside ourselves. We were new parents making one of the worst decisions of our lives. Ultimately, we did not sign a DNR but we do understand and respect why parents do put them in place.

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Jonathan Scheinman

Superheroes

Superheroes

The events of the last week have left me at a loss for words. The world lost a superhero in Gavin Leong. Many have been following his story for years but even more were introduced to him recently. His battle with health related issues began from day one back on September 29th, 2007. Over the course of his short life, he inspired people with his strength and determination. His ability to beat the odds was miraculous. He constantly surprised his doctors and proved to the world what a warrior he was.

On April 10th, Gavin went into cardiac arrest. He fought valiantly to try to recover but his little body had finally had more than it could take. On April 14th, Gavin lost his battle. Throughout the five days, his mother, Kate, continued to blog and post updates to Facebook about Gavin’s final moments. As I read through her posts, I had to look away or risk a steady stream of tears washing over my keyboard. To see a little boy filled with so much good taken from all of us at such a young age is beyond my comprehension. I only knew of his story for a short period of time but those five days will stick with me forever.

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Jonathan Scheinman

What Is Your Message?

Happy New Year!!

2012 is now in the past. Looking back over the year, can you say that you were truly the person you wanted to be? Instead of making resolutions each year to stop doing something, I now make goals so I am motivated to achieve more. I have goals for various parts of my life including family, career, recreation and personal growth. Livy’s Hope is a big portion of personal growth.

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Jonathan Scheinman

Giving Back

When creating Livy’s Hope a few years ago, our focus was on detailing Livy and our family’s journey through the ups and downs that have accompanied Livy’s medical condition. We have learned so much about ourselves and our views on life. From Hailey’s perspective, this is the way it is supposed to be. She doesn’t know any different. We don’t take long vacations and certainly don’t travel far from home as a family. Our home is our fortress where we find comfort and security in what we know best. When we ask Hailey if she is unhappy that we haven’t done many things families usually do, she answers with a confident, “It doesn’t bother me at all. I love my family the way it is.” She is a remarkable 8 year old. I hope she continues to feel that way as she gets older.

Allison and I often discuss our inability to travel and do certain things as a family. One Saturday morning, not long ago, we were sitting in our kitchen after just having heard an advertisement for Christmas Town at Busch Gardens. Allison got really sad because it sounded like so much fun. But we know for us, it would be too difficult. The last time we took Livy to Disney, she had seizures from the afternoon through the evening. There was far too much stimulation. So I told Allison that it’s true, we can’t do many of the things other families can do. But then I added that we have the opportunity to do something extraordinary. By sharing our story on Livy’s Hope and helping others, we have the chance to change lives and to make a real difference. Spreading hope to a single individual can influence hundreds if not thousands more. It only takes one person to start something great. At that moment, I saw the light shine in her eyes like I haven’t in a long time.

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Jonathan Scheinman

Turning On A Dime

Turning On A Dime

We have been talking a lot about dimes at our house over the past few weeks. Hailey is working on a project for her gifted program and her focus is on Franklin Delano Roosevelt. Last week, for some reason, she asked me which president was on the dime. I should have known this one but my memory escaped me so I Googled it. Low and behold, it is FDR. And after a little more research, I discovered why he is on the dime. Back in 1937 FDR asked people to contribute money to fund research for Polio. The National Foundation for Infantile Paralysis (NFIP) was born. In 1945, as a result of an extremely popular marketing campaign asking Americans to send dimes to the White House to fund the NFIP, the organization was renamed the March of Dimes. The March of Dimes is now focused on preventing birth defects and infant mortality. The dime was chosen to honor FDR partly for this reason. Amazing how the smallest coin in the US played such a tremendous role.

Lately, life has been turning on a dime. Our world revolves around Livy and her medical needs. Over the last six weeks, she has had a broken heel and a cast, spent a week in the hospital and has had the flu. This coming Monday, after all the events of the past few months, she is scheduled to return to school. Before she broke her heel, she was doing the best she has ever done. One minute she is doing great, the next, we are in intensive care not knowing if we are going to be able to stop her seizures. The medications we were throwing at her were a dime a dozen. Watching her reminded me of the movie Forest Gump when Lieutenant Dan secured himself to the top of the shrimp boat mast screaming at God, "Is that all you got?" Livy's brain was saying the same thing to the doctors and the seizure meds. Her brain is a powerful enigma we truly do not understand. The odd thing is, when we finally found the correct combination, Livy's seizures stopped on a dime. They settled down as quickly as they appeared.

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Jonathan Scheinman

A Sister's True Talent

I often wonder what Hailey would have been like had Livy not been born with disabilities. Would she be as considerate, empathetic and loving as she is today? Would she be as compassionate, tolerant, and mature when interacting with people? I really don't know the answer. The fact is, Allison and I would still have raised her with the same values...love your family, be polite, kind and respectful and value life for all that it is. But Livy has taught her lessons about life that we never could have.

To see Hailey wander into Livy's room to say good morning is a beautiful sight. She climbs into Livy's bed, cuddles right up next to her and puts Livy's arms around her. Then they smile together and Hailey laughs as Livy unknowingly tickles her. When Livy is on her mat on the floor, Hailey gets down right next to her and rolls around with her. She is constantly encouraging Livy to do her best.

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Allison Scheinman

"I Am Hope" - A Gift for Livy

"I Am Hope" - A Gift for Livy

Please take a moment and listen to this song "I Am Hope". It was written and performed by musician Carmen Magro in honor of Olivia. Proceeds from the downloads of the song will be going to Livy's Hope. We are forever grateful for Carmen's gift and are amazed by his generosity.

This is a message from Carmen:

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Jonathan Scheinman

Our America

This past weekend, I watched the movie Act of Valor. The movie is described as “The mission of rescuing a kidnapped CIA agent from a lethal terrorist cell falls to an elite squad of Navy SEALs in this covert-action thriller. Active duty SEALs play the lead fighting roles in a saga based on actual events from their service.” On the surface, that would aptly describe what transpires. But there is a much deeper meaning. For anyone who has been in the armed forces, it is evident. The real meaning lies in the ultimate sacrifice that soldiers are willing to make to defend our country.

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Jonathan Scheinman

We Move Together

Allison and I took our wedding vows 14 years ago today. For years, we did what happily married, childless couples do. We spent time with friends, went to dinner and to shows, moved from place to place and generally mapped out what the rest of our lives would look like. When the girls were born and we realized that Livy had another plan for us, we were left meandering into uncharted territory. Quite often under these circumstances, couples stand at a crossroad; do they continue on together or go their separate ways. The harsh reality is that a very high percentage of marriages crumble under the weight of such a life changing event.

The book Somewhere in Heaven tells the amazing story of Christopher and Dana Reeve. Christopher Reeve passed away on October 10, 2004 and his wife Dana passed away only 17 months later on March 6, 2006. Many people remember Chris Reeve as Superman from the big screen. However, not enough people know the story of the super person he was and the lives he affected after his horse riding accident on May 25, 1995 that left him paralyzed from the neck down. Perhaps overshadowed in the media by all that Chris did was his relationship with Dana. She was his rock and his hero. She was always there to raise his spirits, to encourage him and to help him believe that he had a purpose. They inspired each other and the world by the hurdles they overcame, the lives they changed and the committed marriage they shared.

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Jonathan Scheinman

Livy's Hope: A New Direction (Revised)

Our apologies if some of you received two emails. We were having some technical issues which stopped some notifications from being sent. We also revised part of this post to more adequately convey our message.

Over the last year-and-a-half, we have been blessed by all of you, our amazing supporters. You have been generous with your financial contributions to help with Livy’s therapies through donations and purchases of Hailey’s jewelry. Livy would not be where she is today without our whole team of followers. You have also given us emotional support through your kind words and heart-felt comments. You have proven to us that providing inspiration and hope can go a long way in helping someone get through a difficult time.

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Jonathan Scheinman

Livy's Hope: A New Direction

Please click here to read Livy's Hope: A New Direction.

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Jonathan Scheinman

The Path Of Hope

My commute each day takes about an hour round trip. I used to listen to the radio, especially NPR. When the news aired, I was listening. But how depressing and boring that got, especially during an election year. One candidate said this about the other candidate and back and forth they went. So I started listening to books on discs. My commute has been transformed into a refreshing, enlightening experience. For those road warriors, if you are not yet doing this, I highly recommend it.

The most recent book I finished is called The Anatomy of Hope by Dr. Gerome Groopman. Dr. Groopman specializes in cancer and other blood diseases. The book deals with his growth as a doctor and an individual in regard to how hope plays a decisive factor in his own life and the lives of his patients. He then sets out to find clinical evidence that hope or the lack thereof can actually influence the healing ability of the body. He goes on to outline how the core components of hope are belief and expectations. Through different types of studies, it has been proven that the brain releases chemicals in the body that can actually mask the effects of pain. Whether hope actually aids in curing certain diseases is still unknown. But what is known is that a person’s ability to heal and move forward step by step largely depends on one’s ability to continue treatment. Hope has a remarkable way of giving a person the strength and courage necessary to endure. Dr. Groopman concludes by commenting that “I see hope as the very heart of healing. For those who have hope, it may help some to live longer and it will help all to live better.”

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Jonathan Scheinman

My Olympic Dream

The Olympics, for many athletes, begins with a dream, a hope or a vision of greatness. Some start participating in a sport at a very early age more for recreation and to have fun with friends. Most try a variety of sports over time, some going on to play in high school and college. The majority of kids stop after that time. However, there are those special, gifted athletes that know from the minute he or she steps foot on a court or grips the uneven bars or wades into a pool that an unbreakable bond has been created. It is a bond and a love that is steadfast and guides them in their lives to follow their dreams.

Along the way, there are many sacrifices. The life of an aspiring Olympian is unlike the life of a typical child. Practice occurs year round perhaps three to four times a week or more with competitions also thrown into the mix. Priorities are rearranged and daily schedules predetermined according to the blow of a whistle or a coach’s insistence on getting there on time. Parents’ lives are one car ride after another to and from the practice facility. But on competition day, there is nothing like being a proud parent.

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Jonathan Scheinman

Windows

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.

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Jonathan Scheinman

I Am Livy

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?

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Jonathan Scheinman

A Petal's Wish Bracelet Auction

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.

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