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Livy's Hope Blog

Welcome to the Livy's Hope Blog!
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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Allison Scheinman

Care Notebooks - Gifts to Parents

Care Notebooks - Gifts to Parents

 

As parents of a special needs child, we know firsthand the importance of staying organized and being able to easily locate Livy's history and present day needs. Therefore, Livy’s Hope has created notebooks to help parents and caregivers keep the necessary pieces of their child’s life at their fingertips. These Care Notebooks are a tool to help parents organize important information regarding their child. They can bring this notebook with them to appointments to help share information with their child's doctors, therapists and school.

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Allison Scheinman

Hope Spreads To Boston

Hope Spreads To Boston

The Livy's Hope Jewels of Hope Bracelets made their appearance at Children's Hospital in Boston this weekend!

Twins, Maddie and Hannah Rezendes, made a donation on behalf of Livy's Hope.
Their family helped to continue our mission of spreading hope and bringing joy to children staying at the hospital.

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Allison Scheinman

My Least Favorite Three Digits

My Least Favorite Three Digits

Today started out a little rough. Livy has been having some breakthrough seizures coming out of sleep in the early mornings. No rhyme or reason...they are just showing their ugly faces again. We can usually tell what type of day she is going to have based on the amount and size of her smiles :) This morning, not so many and not so big.

The rain was coming down pretty hard and I debated about taking her to school. She was now awake and alert and I took the chance and took her in. Dropping her off, I said to her, "Now you behave sweetie...mommy doesn't want any phone calls today." Let's just say, she had other plans.

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Allison Scheinman

Stella & Dot Fundraiser for Livy's Hope

Stella & Dot Fundraiser for Livy's Hope

We are excited to announce a fun and fashionable fundraiser for Livy's Hope!

Laura Slook, a Stella & Dot Independent Stylist located in Massachusetts, has chosen to support Livy’s Hope due to the "awe inspiring story of courage and determination that one family has dedicated their lives to."

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Allison Scheinman

A Special Day...A Fun Contest and More!

A Special Day...A Fun Contest and More!

Tomorrow, March 26, is Purple Day! This day was started to support epilepsy awareness worldwide.

Would you please consider wearing purple in honor of this day and for those like Livy that have epilepsy? We are offering a special contest too! Take a photo of you and your friends or family wearing purple and share it on the Livy's Hope Facebook page. Hailey and Livy will choose their favorite photo and we will send you a set of Hailey's "Art by Hailey" notecards!

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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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Allison Scheinman

My Little Professors

My Little Professors

Last week, Hailey, Livy and I went to my sister Meaghon's classroom to share a presentation about our family. Meaghon teaches 7th and 8th grade students at the Safety Harbor Montessori Academy. We agreed that this would be a wonderful opportunity for us to go in to share our experiences and to talk about Livy's Hope.

Our family has presented to elementary aged children and families of children with special needs before but we had never spoken with middle school students. We weren't quite sure what to expect. It was a learning experience for us all.

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Allison Scheinman

"Jewels of Hope" Bracelet Collection

"Jewels of Hope" Bracelet Collection

Livy's Hope is now offering the "Jewels of Hope" collection of bracelets for purchase in the shop!

Through your purchase of these bracelets, Livy's Hope can continue donating other "Jewels of Hope" bracelets to girls in the hospital. Sometimes it is the small things that can make all the difference. We look forward to continuing this project and to create others which will allow us to fulfill our mission.

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Allison Scheinman

One Hour Left - Hailey's "Love's Blue Wish" Bracelet!

One Hour Left - Hailey's "Love's Blue Wish" Bracelet!

One of Hailey's latest creations "Love's Blue Wish" is only up for auction for one more hour. If you are interested in bidding, please click the link below to take you to her auction. She will be eagerly waiting to see who wins!

Thank you for supporting Livy's Hope!

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Allison Scheinman

Let's Get Real

Let's Get Real

Life isn't always all butterflies and happy songs. Like most people, our life can get ugly and we don't always show that side of ourselves to others. I read an article yesterday about "fakebooking" and the refreshing truth it discussed how we all, from time to time, edit the "suckage" from our lives and act like we have it all together.

Most days I am happy and I do appreciate life and what has come my way. I share with others the good that I see and how much I try to take it all in and make the most of everything. We know we are lucky in so many ways but let's get real, we're human, we get angry, ticked off, frustrated, hurt, and overwhelmed too.

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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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Allison Scheinman

"Love The Beach" Bracelet Auction - Art by Hailey

"Love The Beach" Bracelet Auction - Art by Hailey

Hailey is offering an eBay auction on one of her bracelets from Art by Hailey!

"Love The Beach" is available for bidding now at the link below. All proceeds will benefit Livy's Hope.

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Allison Scheinman

Because of You

Because of You

We do what we do because of you. We continue to keep going because you told us we can. We get through and find peace in another day because you stand by us. We are who we are because you encourage us.

We knew we couldn't do this alone so we asked others to help, and they have.

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Allison Scheinman

Three Choices

Three Choices

We have many choices to make in life. Sometimes the choices are made for us and we are powerless to them. But, we can choose how we will let it affect us. In the end, when something bad happens, we have three choices, you can let it define you, destroy you or strengthen you.

I remember very clearly one night shortly after our girls were born. Livy had just come home with us from the hospital for a brief stay before we headed to Boston for a second opinion. I sat on the couch staring off not believing what had happened. Our little baby was not what we had expected her to be. I felt trapped, imprisoned and was sure that my life had ended at that moment. Life would never be the same again and I was forever changed, in a sad, terrible way. At that moment, this bad thing that had happened defined me and put me on a path I was terrified to face. I had become a depressed, scared, empty person and I wasn't who I used to be.

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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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Allison Scheinman

Never On My Own

For our past two anniversaries, Jon has written blogs that made me feel so special and honored to be his partner through all life has brought us. It amazed me how he felt about me as a mom and about our relationship. I wanted to return the gift and let him know what he has brought to this family.

To say that Jon is a great dad is hardly enough. He left for work this morning once again "on fumes". Late nights are a normal part of his life. He has stayed up on so many occasions working on a blog, a video, anything to help Livy. After the short couple of hours he has with the girls when he comes home from work, he works again tirelessly on whatever it may be at the time that would help to get the word out about Livy's Hope, to share Livy's story and to inspire others.

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Allison Scheinman

"Livy's Hope Cupcake" at The Cake Bar

"Livy's Hope Cupcake" at The Cake Bar

We are so excited to tell you about an amazing event that will be taking place next week. We were approached by a very dear friend, Tracie Turinese, owner of The Cake Bar in Franklin, MA about doing an event to raise money for Livy's Hope! She asked if Hailey would design a cupcake in honor of Olivia. As you can imagine, Hailey was thrilled and got right to work coming up with an idea. The "Livy's Hope Cupcake" will be offered next weekend January 18, 19 and 20 at the bakery and all proceeds will be donated to Livy's Hope. Needless to say, our family is so thankful and excited for this beautiful act of kindness. We have all tasted the amazing cupcakes from this bakery in our hometown. Tracie is a gold medal winner of the Food Network Challenge!

The "Livy's Hope Cupcake" is a moist chocolate cake stuffed with rich chocolate ganache, smothered in strawberry buttercream, and garnished with a very special butterfly. Hailey felt it was very important that the colors matched the "Livy's Hope" logo and that the very important butterfly, resembling hope, be on each cupcake.

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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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Connect today and join us on
our journey of hope.

 

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