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Livy's Hope Blog

Welcome to the Livy's Hope Blog!
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

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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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

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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Allison Scheinman

The Middle Seat

Today I was picking Livy up from school and on the way home I came across a radio station I never really listen to. I heard a very interesting sounding woman telling a story during a segment of her message "Sportin A Tude". Her name is Patsy Clairmont. Patsy is an author and speaker and offers spiritual and emotional hope to those in need.

Her story was about a plane trip she had taken. She realized that the only seat left on the plane was a middle seat. The last thing she had wanted was to have to sit between two people for the trip. No one really seems to like the middle seat. But, we have all been there and we know it has its problems. That is why my mom taught us early on to get a letter "A" on Southwest!

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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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our journey of hope.

 

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