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Livy's Hope Blog

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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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Jonathan Scheinman

Family Cafe Conference 2012 Presentation

I was finally able to finish putting the video together of our presentation at the Family Café Conference. I broke it into 4 parts since it is rather lengthy. We had a wonderful experience and met some great people. They must be great if they were willing to listen to us for an hour:) Hailey did an amazing job and was incredibly poised in front of everyone. After watching the videos, anyone familiar with the movie Monster's Inc. will understand the joke regarding Hailey and Mike Wazowski. For those of you who do not know about the Family Cafe Conference, it is an annual event held in Orlando that brings together individuals with disabilities and their families with state agencies, non-profit organizations and other service providers, so families can network with each other, learn what services are available to them, and find out the best way to go about accessing those services.

Our presentation as it appeared in the program was:

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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

Bath Time For Livy

It is always a challenge giving Livy a bath. She is getting heavier and longer and outgrowing our current set up. This video will show you how we lower her into and lift her out of her bath chair. We have discussed various possibilities with a contractor to add on a bathroom that will accomodate her for years to come. We would be able to roll her bath chair in and out of a shower or use her lift to put her in her chair. At this point, Livy is the only one who looks forward to bath days. But since she is happy during and after, we are happy too. Enjoy and thanks for reading!

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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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Jonathan Scheinman

Video of Hailey and Livy On Bay News 9 June 4, 2012

Here is the Everyday Hero video of Hailey and Livy on Bay News 9 for those of you who were not able to see it. Allison and I had such a wonderful day and we were so humbled by the outpouring of support.

Hailey also had a great day. She was able to watch the video on TV in her classroom with her friends. I still don't think she completely understands the significance of all she has done. As she says in the video, she does it because she loves her sister. Her devotion at such a young age is amazing and she wears the title of hero with grace and humility. We can only hope that as she gets older, she continues to exemplify the qualities she has exhibited toward Livy thus far.

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Jonathan Scheinman

Road Trip To The Project Store

It seems as though our second home is Michaels or Joann Fabrics, also known as the "project store". We make many visits to the project store so Hailey can pick out the beads she needs to make her bracelets or to purchase the paints she uses for her paintings. On this outing, we wanted to take everyone along so you can see how Hailey selects her beads. She has a great eye for colors and patterns and is able to assemble a bracelet in her mind before actually putting it together.

We are so proud of her for taking the time to do this for her sister. She still doesn't realize the magnitude of what she is doing or the impact she is making. She would say she does it because she loves her sister and she wants to be with her family. I can't think of any better reason.

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Jonathan Scheinman

Hailey's Lemonade Stand

We wanted to let everyone know that Hailey will be holding her first lemonade stand event on Sunday, May 27th from 2pm - 5pm at our house. She is having a sports themed stand and will be selling lemonade and various baked goods. If you have a chance, please stop by. Please email us at This email address is being protected from spambots. You need JavaScript enabled to view it. if you need directions. Hope everyone has a great holiday weekend!
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Jonathan Scheinman

Lemonade For Livy 2012

The Lemonade For Livy 2012 fundraiser starts this Saturday, May 26th and runs through Sunday, August 26th. We had a lot of fun last year with great participation. We are hoping to make this year bigger and better. The kids who created stands did a wonderful job and really looked forward to selling their lemonade. They all learned a valuable lesson in helping others in addition to competing for the most creative stand. We had some adults participate as well so there are no age requirements to enter a stand. For more information about dates and supporting materials, please click here.

Hailey is really excited about setting up her first stand on Sunday, May 27th. To get the word out and to demonstrate some creative themes, she helped us make this entertaining video. She was such a great sport. She required little direction with the scenes and came up with almost everything on her own. The unconditional love she shares with her sister truly shines through. We are so proud of her for all of her selfless acts of kindness. Please take a moment to watch and share with as many others as possible. The direct link to the video on YouTube is http://www.youtube.com/watch?v=8vS9FoqrmSc if you would prefer not to share the blog link.

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Jonathan Scheinman

A Yin and Yang Week

Livy Rolling

Mother's Day weekend was a lot of fun. The four of us went out to lunch to one of our favorite restaurants in Safety Harbor called Green Springs. The girls and I got Allison a chiminea for our back yard and she was so excited. She has always wanted one. That night, we sat under the stars and toasted marshmallows. It was a perfect day. On Sunday, we enjoyed brunch at my in-laws' house. Mimosas and Bloody Mary's were flowing along with a full spread of appetizing breakfast delights. Another great time had by all.

Monday, when I got home from work, I was greated with the amazing news that Livy had rolled over to her stomach. Allison snapped this picture to capture the moment. Livy hadn't done this in over a year so it was a big deal!

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Jonathan Scheinman

Visiting Winter The Dolphin

After watching the movie A Dolphin Tale, we decided to take the girls to the Clearwater Aquarium. For those of you who have not seen the movie, A Dolphin Tale is the story about Winter, a dolphin who lost her tail after getting caught in a crab trap. Winter was nursed back to health at the aquarium where she was fitted with a prosthetic that enables her to swim. She became an instant sensation and inspiration to many of those with disabilities. People from all over the world travel to see her and to experience her amazing story.

While at the aquarium, we saw Winter and had a close encounter with her friend Hope. Both the girls really enjoyed the experience. Dolphins are amazing creatures and Winter's will to live and persevere is an example for us all to follow.

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Jonathan Scheinman

Welcome Blog

Welcome to the new and improved Livy’s Hope blog. A big welcome to all of you who were following Livy’s progress through the CarePages website. We hope that you will continue to follow Livy’s progress and all that we do to support her. In order to make our blogs easier to maintain, we have decided to combine the Livy’s Updates, Inspire Me! and Art By Hailey blogs into one overall Livy’s Hope blog. We intend on creating more entertaining videos, detailing inspiring stories and keeping you better up to date on Livy’s progress.

Many of you have told us “I don’t know how you do it.” The truth is, we could not do it without the love and support of so many. The encouragement and caring from all of you inspire us to stay positive and to keep us moving forward. We hope you will continue to visit us at Livy’s Hope and share our story with others. We are only just beginning in our quest to educate, advocate and inspire!

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Jonathan Scheinman

Young Hero

There are many times in a father’s life when he is proud of his young child…when she is taking her first steps, speaking her first words, learning how to ride a bike and the list goes on. Back in November, we submitted an entry for Hailey for the Pinellas County’s School Young Hero award. We nominated her because of her dedication and devotion to her sister Olivia as well as her outstanding academic performance. She received two letters of recommendation, one from her principal and one from her kindergarten teacher. The description of the award is as follows:

“The Pinellas County Schools’ Young Heroes award program was created in 2007 as a way for the district to honor students who have overcome adversity, excelled in academics or given back to their community. These students have perseverance, strong work ethics, and are character role models. Six students are honored each school year, (one elementary, one middle and one high school, per semester). To date, the district has recognized 25 Young Heroes.”

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Jonathan Scheinman

Live Well, Laugh Often, Love Much

As 2012 begins, I reflect over 2011 only to find that I am not living the life I want to live and am not the person I want to be. I am sure I am not alone in this assessment. Therefore, in 2012, I plan to live well, laugh often and love much. This is not so much a New Year’s resolution, but a pact with myself. It is a conscious lifestyle change that will take work but will lead to peace, happiness and closer relationships.

Instead of giving something up this year, I want to add value to my life and others’ lives. Making a difference in the lives of family, friends and even complete strangers seems like a life worth living. Living Well is not just about traveling, eating at the best restaurants or having a lot of fun. In my opinion, the people who are most remembered are those who help others or change lives through their generosity and selfless natures. And yet, so many of us pass up the opportunity to do so. I want to wake up each day and be excited about life. Most people work in a job or live a life that doesn’t appear to serve any real purpose which leads to a lack of creativity and a lust for a better future. We torture ourselves into believing if I only had more or if I only had the perfect job, life would be so much better. Well, life is what you make of it. The way I see it and to take a quote from the movie Shawshank Redemption, “It comes down to a simple choice, get busy living, or get busy dying”. Hope and choice are two underlying themes from this movie and both are controlled by each and every one of us. They are intertwined. We all have the choice to bring hope into our lives and to spread that hope to others. We have been given the gift of choice; each day is what we make of it. Each day should be lived as if it was our last.

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Jonathan Scheinman

Never Quit

I am often reminded of what my high school soccer coach said to me during a preseason game over twenty years ago. We were playing a team from a nearby town that happened to have one of the best offensive players in the state. Lucky me, I got to cover him on defense. Midway through the second half I was clearly tiring. My coach noticed this and yelled to me, “Jon Scheinman, you are one of the guys who are never coming out!” The implicit meaning of his exclamation was that I needed to be ready to play the whole game, to come prepared both mentally and physically and to always give everything I had on the field.

It is often said that we are a sum total of all our experiences throughout our lives. But over the course of time, there are those gems that are forever fused with the fabric of our identities. For me, this is one of those statements.

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Jonathan Scheinman

Partner For Life

It is said that the relationship between a husband and wife transforms after having kids. The focus changes from each other to the little ones pining for attention. Romantic evenings are replaced with sleepless nights. Last minute get-a-ways turn into months of planning for a Disney vacation. A peaceful movie together turns into play, pause, play, pause as we attempt to get some semblance of privacy. By no means am I saying these things are bad. They are just different. I would never give up the family I have today. They are my world.

To some extent, I was prepared for this type of transformation. Obviously, Livy has brought an entirely new perspective into the equation. That I was not prepared for. But as most things in life that are unexpected, one learns to adapt. In our case, we attempt to view the situation in a positive fashion by sharing our experiences with others in order to bring light to a side of life often kept in the dark. There are many clichés to describe our situation, making lemonade out of lemons, what doesn’t kill you makes you stronger, you must have been chosen for it because you would be able to handle it and the list goes on.

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Jonathan Scheinman

What If...

As a parent of a disabled child, I constantly find myself asking “What If”. What if we had two healthy twins that could play and talk together? What if we didn’t have to live by the clock to administer medications? What if we could celebrate a holiday and not have to worry about seizures or ending up in the hospital? What if Olivia was able to tell us how she feels and where it hurts? What if I could wake up one day and Olivia could look into my eyes and say, “Daddy, I love you.”

What if. Those two little words that will forever keep me wondering. Every day is a struggle to let go of the dreams we had that will never quite turn out the way we thought they would. Most parents envision their kids going to school, then to college, then getting married, then grandchildren and a host of other things in between. I have now replaced those thoughts with hope. Hope that Olivia will be able to sit up by herself and watch her sister showing her a new Barbie. Hope that Olivia will one day be able to conjure up enough strength to take that first step by herself even if she is wearing leg and arm braces. Hope that one day Olivia will be able to raise her head and simply say hi. And hope that if nothing else, I can tickle her and she will know for an instant what it feels like to laugh.

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Jonathan Scheinman

Siblings Of Kids With Special Needs

Siblings of children with disabilities are very special individuals. They are exposed to a life that the majority of kids will never know. They see their parents go through physical and emotional distress dealing with incredibly difficult situations and decisions. These kids are often shuffled off in tow to doctors and physical therapy appointments, hospital visits and equipment fittings. In the same trip, they may also have a play date and birthday party to attend. Holidays are typically celebrated at home or very near by while friends are flying or traveling long distances to celebrate with relatives. Vacations as a family can often last for only a long weekend since leaving the security and comfort of home can test the patience of even the most seasoned parents.

These children tend to think of the abnormal as normal. They are remarkable and develop an understanding for a part of life that is seldom in the public spotlight. At times, some rebel because the desire for a conventional life is so great. Often their characters glow with empathy and acceptance that is nearly impossible to teach unless lived first hand. They tend to spend an abundance of time with grandparents and other relatives, learn the importance of family support at a very early age and are able to make a positive impact on other kids and adults by sharing their experiences.

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Jonathan Scheinman

"My Story" Magazine Article

A few weeks ago, we were approached by a friend asking if we would like to write a story about Olivia and our family that would appear in a local magazine called Tampa Bay Good Living. The goal of the magazine is to "to inform, inspire, encourage and celebrate healthy, happy and good living here in Tampa Bay and beyond." The editor felt that we had an inspiring story to tell. The next issue is due out just before Father's Day, so they thought writing the article from a father's perspective would be insightful. Thanks very much to Jenny and Pam who made it all possible!  

My Story
by Jonathan Scheinman

I once thought the role of a father meant raising your kids to be the best they can be, to give them all the opportunities to succeed in life and to support your family in whatever way necessary. What I discovered when my twin daughters were born is that the responsibilities of a father are so much more. Hailey was born first and was perfectly healthy. Olivia arrived an hour later. Soon after birth, Olivia began having seizures.

After several turbulent years, Olivia’s diagnosis was determined to be multi-focal, partial epilepsy caused by a general brain malformation. She has been through a multitude of hospital stays including two for major brain surgeries. Both put extreme emotional and physical stress on our family and my relationship with my wife Allison, causing me to frequently ask the question, “Would my life be better with or without Olivia?” An odd question to consider regarding your own child, but as a father with a daughter who has numerous disabilities, it was unavoidable. Our idea of normal had been twisted and completely turned upside down.

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