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Jonathan Scheinman

Lucky Friday The 13th

Lucky Friday The 13th

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.

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Jonathan Scheinman

Livy's Hope For A Cure

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.

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Jonathan Scheinman

Happy Mother's Day To The Super Moms

Happy Mother's Day To The Super Moms

Wouldn't it be nice if, when a woman got pregnant, she had the option to sign up to be a Super Mom? Isn't it only fair? No mother-to-be ever says, “Sign me up to give birth to a child with special needs. Perhaps my marriage will become extremely complicated or even end. I hope to lose many of my friends after the baby is born. I look forward to my body deteriorating much faster than women my age. Put my name down for depression.” Yet these are all common realities the Super Mom faces.

It is a fact that the majority of parental caretakers for special needs children are mothers. In today’s world, most dads go off to work not fully aware of what happens at home. Many times, dads turn their backs on their families all together because they are not able to handle it emotionally. I can’t even imagine walking in the shoes of a single mom raising a disabled child. Again, another choice these amazing moms do not get to make. Allison and I have a hard enough time and we are both engaged.

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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

And The Award Goes To...

Anticipation, nervousness, excitement…they were all over Hailey’s face on February 21st. We arrived at the a la Cart Pavilion in Tampa to attend the 8th annual WEDU Be More Awards which recognizes many of the unsung heroes in the local community including non-profits and other individuals who go above and beyond. Hailey was nominated and was a finalist for the Be More Inspiring: Rising Star Award because of all that she has done to help raise money for Livy’s therapies. It started back in November when we were told by Hailey’s principal who heard from her music teacher that he had heard from a friend about her nomination. To this day, we still do not know who nominated her but we are incredibly grateful. The guideline was that the nominees with the most on-line votes would be selected as finalists and then judges would decide the winner. This set off a flurry of voting from our family and friends. People could vote once per day. I was told that reminders were set and reoccurring appointments on calendars were created so as not to forget to vote each day. Thank you to all who voted!

After the voting was complete, we were ecstatic to learn that Hailey was a finalist! This meant we would be invited to the WEDU celebration where the winners would be named. None of us knew what to expect at this point so we got our tickets and prepared for the day. I had watched the video from the previous year’s award ceremony and I advised Hailey that she may want to write down a little something to say if she was lucky enough to win. She got right down to it and wrote a paragraph on note cards which she then rehearsed a handful of times. I am still amazed that at only 8 years old how comfortable and poised she is when she speaks in front of others. Credit that to her gifted program at school and to the times our family presents to her classmates or at disability conferences.

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Jonathan Scheinman

Rock Star For A Day

Spoiler Alert: Livy makes her cameo appearance at the end and wins the Oscar for Best Smile.

It is not often one gets to experience what it feels like to be a rock star. We often dream of the glitz and glamour that is associated with musicians performing in front of thousands of adoring fans. Traveling the country on tour, a new state and venue nightly, waiting backstage to go on and relaxing backstage after the concert is finished.

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Jonathan Scheinman

Life Is Sweet

Life Is Sweet

Strawberry buttercream, chocolate filled chocolate cake topped with a chocolate butterfly. Life is certainly sweet when filled with such a scrumptious dessert. That was all it took to bring hundreds of people out to support Livy's Hope. The fundraiser at The Cake Bar in Franklin, MA a couple of weeks ago was remarkable. Our friend Tracie and her staff worked tirelessly to keep the cases full of mouthwatering cupcakes. In the end, 2,417 cupcakes were sold! The money raised will help to further our mission of supporting children with medical needs and their families.

I am still amazed by what people can accomplish when they come together in support of a common goal. The feeling of doing something good for others is both contagious and addictive. A small act of kindness is all it takes to change someone's life.

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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

Perfect Storm

Monster Storm Has Meteorologists Spooked. This is one of the top stories today on Yahoo. There is a potential collision of a hurricane and arctic blast over the East coast that could be worse than the 1991 "Perfect Storm". After reading the title, that is just how I felt about life in our family right now, our own perfect storm.

Last Tuesday night Livy had a flurry of seizures in her sleep. We weren't quite sure what to make of it but it made for one rough night. There is nothing like being woken from a dead sleep to the sound of your child seizing. I have friends who know exactly what this is like and they would agree. She appeared to be OK during the daytime for the next few days but the nights were terrible. Nocturnal seizures are not usual for her and we knew something was brewing. Jon and I started brainstorming. The barometric pressure dropped dramatically last Tuesday. Ahh, that must be it! Or maybe it is because Livy is due to have her hormonal implant changed out and the medication must be not as effective. That must be it! Or is this just Livy in her ever changing seizure cycle?

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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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Jonathan Scheinman

Finding Hope Around The World

Finding Hope Around The World

Livy's Hope has begun a new initiative: Finding Hope Around The World. The goal of Finding Hope Around The World is to uncover as many stories of hope from as many countries as possible. When we were discussing the concept, we thought it would be a good idea to have a theme song. So we put the word out on facebook to see if anyone had some contacts in the music industry who would be willing to help. A friend from high school responded that she may be able to help. And help she did. She introduced us to Carmen Magro, a musician from Philadelphia who I wrote about in a previous post. Carmen was more than willing to work with us to write and record an amazing song that really gets to the heart of having hope.

The name of the song is I Am Hope. The basis for I Am Hope is derived from a poem I wrote called My Name Is Hope. Since I am more of a poet than a song writer, Carmen used the basic premise of my poem and incorporated it into his song. We couldn't be happier with what he has created. We really feel the power of music when listening to his song. It will be a major part of Finding Hope Around The World and we intend to incorporate I Am Hope into a video in the next couple of months.

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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

From The Beginning

Just yesterday I said to Allison, “Did you think seven years ago, we would be where we are today?” Seven years ago, we weren’t thinking about much other than “How can our lives work like this? What happened? Who’s fault was it?” We felt helpless, alone and weak. We were dealing with the devastating fact that one of our twins was not going to have a normal life. We had only just begun to realize that a great journey loomed in front of us.

As we were preparing for the Tampa Bay Times article, I uncovered some old video we had not watched since it was filmed. It was filmed during a time that was fraught with mixed emotion and hopelessness and it resurrected deep rooted anguish. But as I viewed it, wiping the tears from my eyes and the tightness fading from my throat, I saw how far we have come and how much wiser we now are. I also see that our path in life was changed for a reason.

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