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Livy's Hope Blog

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Jonathan Scheinman

Through The Eyes Of A Child

It is so easy to take life too seriously. I find myself doing it every day. To see life through a child’s eyes is perhaps the most powerful way to take a step back and enjoy what has been given to us. My daughter Hailey has so many wonderful gifts which she selflessly shares without even knowing it. Allison and I have commented on many occasions that Hailey has gotten us through some of the most dire of times over the last six years. Her sense of humor has brought tears of laughter where minutes before, there were tears of sorrow.

But as we age, most of us lose that sense of awe for what the world holds. We try to conform our children to society and in the process, we chip away some of their individuality and spontaneity. I find myself doing this and I am ashamed. So to Hailey, I promise to do a better job and to loosen up.

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Jonathan Scheinman

A Tribute To My Grandmother

Yesterday, we said goodbye to an incredibly admirable woman, my grandmother. She lived an amazing life full of rich experiences and close relationships. She seemed to float through life impervious to all its pessimism and malice. I was asked if I wanted to speak at the service and with great appreciation, I accepted. Below is her tribute. Although quite personal, I feel it would be a tragedy not to share the details of someone whose life has inspired a family’s generations and woven her memory into the fabric of our existence.

Mema’s Tribute – 3/20/2011

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Jonathan Scheinman

Free Hugs


I received this video in an email and thought it was pretty cool. Strangers hugging strangers; miscellaneous individuals breaking down the barriers of social space to share a brief moment of closeness. Race nor socioeconomic status nor gender nor age matters here. Just a feeling that each person matters.

A hug can do so many things. It can comfort you in times of despair or enhance a moment of exceptional happiness. A hug can invite someone into your life or say goodbye for now. A hug can be romantic or platonic. A hug is security in times of uncertainty. So many uses for hugs but so underused. Don’t be stingy with your hugs. Don’t save them for later since later may never come. Hugs are free and they will never run out so don’t be afraid to spread them around.

Hug your kids as much as possible. Some day, they will leave the nest and it’s hard to give hugs on a phone call or in a text message. Hug your spouse, partner, boyfriend or girlfriend whenever you have the chance. He/she needs to know you want to feel the warmth only a hug can create. Hug your brothers and sisters. They are the closest people to you on this earth and that should never be taken for granted or forgotten. Hug a friend because friends need to know you care and will be there for them. Hug your parents because there will come a day when you will no longer be able to.

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Jonathan Scheinman

Lemonade For Livy

Yesterday afternoon, Allison received an email with the picture seen here. The girls in the photo live down the street from us. The one to the right is Hailey’s classmate. Many of Hailey’s friends have met Olivia since we took her into Hailey’s school and discussed disabilities with them. We shared many topics including how Olivia is fed through a MIC-KEY button in her belly, the toys and equipment she uses during therapy and how Hailey helps her sister in many different ways. Needless to say, kids are just drawn to Olivia and every time Hailey has her friends over for a party or visits their homes, they always want to see and talk to Olivia.

When we looked at this picture, we were incredibly humbled, overcome with appreciation and joy. Hailey’s classmate Megan decided on her own, to sell lemonade in order to raise money for Olivia’s therapy. She called it, Lemonade for Livy. To see a child that young who is so understanding of a situation and cares enough about others to do something so wonderful is truly inspiring. We sometimes hear stories of how children act so selflessly and it is an honor to have witnessed it first hand. Gene Wilder in Willie Wonka said it perfectly, “So shines a good deed in a weary world.”

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Jonathan Scheinman

What's In A Smile

What’s in a smile? A smile is welcoming and inviting. A smile is infectious and contagious. A smile can change the way you think about your day.

Every morning when I go in to say good morning to my daughter Olivia, she greets me with the most beautiful smile. She can’t say good morning or hi daddy so I believe it is her way of saying I love you. That simple, glorious smile warms my soul and softens my heart. I don’t drink coffee which is a running joke in our family because I don’t really have a good reason not to. But Olivia’s smile acts like my morning caffeine. It wakes me up and gets me ready for the day.

Imagine if everyone smiled like Olivia…so innocent, so trusting, so pure. Whenever Olivia has been in the hospital, we always knew she would be okay when she started smiling again. Even after her major surgeries, it was her amazing smile that brought her back to us.

I think we all have good reasons to smile. But we are so concerned about the every day monotony we face that we forget how truly great life is. A smile says to others, I am bigger and stronger than my worries, I want to welcome you into my life even if for just a passing moment.

Seema Chowdhury describes the essence of a smile perfectly in her poem A Smile Is A Sign Of…

A smile is a sign of love
A smile is a sign of care
A smile tells how much to others
You are important and also dear

A smile is a sign of cheer
A smile is a sign of trust
A smile shows how you can
Be happy even in hard crust

A smile is a sign of joy
A smile is a sign of hope
A smile teaches you how you can
Remove the clouds of mope

For nothing but only a smile
Takes away your pain and trial
And pick your trouble's pile
And let you smile, smile and smile.


If we all smiled just a little more, imagine how friendly the world would be:)

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Jonathan Scheinman

Little Wonders

Since today was a holiday, I was able to take Olivia to her three hour intensive therapy session. My mom tagged along and it was great to have her there. It was her first time seeing Livy at one of these sessions. It’s hard to understand what these kids go through during this type of therapy until you see it for yourself. Imagine if you went to a gym for a three hour stretch and were allowed one water break for about five minutes. I am guessing no one would willingly do that since it sounds like complete torture. But the kids I see go through it for three hours a day, three weeks straight. Luckily, they get weekends off. Some cry, some yell out in pain and frustration, some fall asleep and are awakened only by a therapist putting on a new piece of equipment for the next exercise. But they keep going and fighting some just trying to sit up, some trying to walk, some trying to reach out for an object. Every one of these kids has amazing heart and a strength that comes from a place that I have only heard of and never visited. These kids fight with their condition every day in hopes that with hard work, they can overcome their disabilities. But these are some of the happiest kids you will ever see. They don’t know what it means to need the newest video game or a new outfit. They just want to be loved and accepted.

As I sit here, watching my daughter trying to complete the most basic of movements, I am reminded of how far she has come. Every child in a wheelchair or using a walker or with leg braces has a story; a story that was most likely years in the making and was fraught with heartache but also filled with tremendous victories. Each story often defines a family, closes many doors while opening even larger ones. Some families falter under the immense pressure of broken dreams. But others walk the rocky road, are able to rise above and make a real and lasting impact. I choose to make a difference, to be accepting of others, to not judge those I may not understand and to always be there for my family. What do you choose?

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