Livy's Hope Blog

OK, it's a tough one...what lights up your eyes more, that smile or those socks?

It's time for an update! We have been busy all wrapped up in a very exciting project that we will be sharing with you all shortly. It's a good one, and we can't wait to share it with the world. Stay tuned...

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.

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.

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.

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 29^th, 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 10^th, 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 14^th, 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.

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.

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.

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.

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."

Purple Day was founded in 2008 by nine-year-old Cassidy Megan of Nova Scotia, Canada. The international color of epilepsy is lavender which can be associated with solitude. Isolation from others is what many of those with epilepsy and seizure disorders feel. This day was created to let those with epilepsy know they are not alone. That is a goal of Livy's Hope as well, to bring people together to embrace, educate and inspire.

Today our family proudly wore our shades of purple to let others know we support epilepsy awareness. Seizures are by far the worst plague for Livy. Controlling them is a constant battle and the medications we give her have so many side effects. We have sat for hours at a time watching Livy have seizure after seizure and it is heartbreaking. Our dream is that one day a cure will be found and those with epilepsy will be free from this horrible disease.

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!

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 8^th 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.

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.

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.

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!

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.

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.

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.

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.

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.