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Happy Mother's Day To The Super Moms

Happy Mother's Day To The Super Moms

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.

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Guest — Carol
Jon, and behind your three girls is a great Dad and husband...lots of hugs,
Sunday, 12 May 2013 14:31
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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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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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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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Guest — Debbie Hadlock
Very well written!
Friday, 19 April 2013 10:10
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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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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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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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Recent Comments
Guest — Stavria
I'm telling you, Anna and Livy are having a similar time. I remember they both went through this in the fall and here we are agai... Read More
Friday, 05 April 2013 13:37
Guest — Andrea Guarino
I love you. And your family. All of my strength and love is with u now and always.
Friday, 05 April 2013 18:44
Guest — Carol
I'm so sorry about your day, and so many days...hugs and prayers
Friday, 05 April 2013 19:17
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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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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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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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Recent Comments
Guest — Amanda St. Dennis
Congratulations Hailey! You deserve the award. I will view the video when I get home
Friday, 22 March 2013 08:34
Guest — Kim Rezendes
That was awesome!
Friday, 22 March 2013 09:12
Guest — Laura Smith
Hailey, you showed poise and professionalism decades beyond your years. You are a lovely, amazing young lady. Congratulations on y... Read More
Saturday, 23 March 2013 02:16
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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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Recent Comments
Guest — Karen Jacobs
Just wonderful. You must be so very proud of Hailey. She is a unique little girl; as is Olivia. Bless you all.
Friday, 15 March 2013 18:18
Guest — Deborah Telles-Palladino
Once again, the family "scheins" and Hailey is an exceptional and rare person. (But you all are.) She is a child in number of y... Read More
Friday, 15 March 2013 21:03
Guest — Meaghon
We loved having you visit and speak at the school. You all taught the kids so much. I love you all so much and I am proud and luck... Read More
Friday, 15 March 2013 21:14
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"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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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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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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Recent Comments
Guest — Poppi
Thank you for that Alli. Well spoken and necessary for the real world. Love you Poppi
Thursday, 28 February 2013 12:10
Guest — Marie MacSwain
I read the other article and laughed my way through it. I read yours and felt pain for all you are going through. I'm so glad yo... Read More
Thursday, 28 February 2013 13:02
Guest — Melissa Surprenant
YOU and your whole family are so strong. Livy couldn't be in better hands. God was looking for all of you when he put your family ... Read More
Thursday, 28 February 2013 13:24
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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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Recent Comments
Guest — Karen Jacobs
Watched it all..definitely enjoyed. It appears you have an up and coming star playing guitar and dancing. Hailey is a doll. Mos... Read More
Monday, 25 February 2013 23:55
Guest — Carol
Wow! What a wonderful experience...and what love in all of your eyes when you got back home...hugs, Carol
Tuesday, 26 February 2013 10:39
Guest — Kathy Tessler
How very special and beautiful!! Lots of love, Kathy
Tuesday, 26 February 2013 20:08
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"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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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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Recent Comments
Guest — Debbie Hadlock
What you are doing is awesome!!!! Big hugs to all of you and keep up the good works you do for so many others. What an important... Read More
Friday, 15 February 2013 11:29
Guest — Gary Parrish
Your entire family never ceases to amaze me! Despite everything you have gone through you still have so much love and light to sha... Read More
Friday, 15 February 2013 20:21
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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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Recent Comments
Guest — Marie MacSwain
Read a column in Sunday's Globe by Beverly Beckham, whose first granddaughter was born with Down Syndrome. Bev had taken her to D... Read More
Friday, 08 February 2013 12:31
Guest — Joanna Cavanaugh
I ALWAYS look forward to reading your "blogs"- Since I am NOT computer literate, I may be using the wrong wording, so forgive me ... Read More
Friday, 08 February 2013 14:30
Guest — Rachel
Hi! I found your blog via Love That Max link-up and LOVE it!! I appreciate what you shared in this post and agree that acceptance... Read More
Saturday, 09 February 2013 21:18
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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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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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Recent Comments
Guest — Karen Jacobs
Lovely, Allison. May you both continue to receive the strength needed. Blessings for all of you! Sincerely, Karen... Read More
Thursday, 17 January 2013 23:54
Guest — Deborah Palladino
You are both angels put on earth. How you do what you do with such grace is an incredible gift and life lesson to the rest of us.... Read More
Saturday, 19 January 2013 22:01
Guest — Deborah Palladino
You are both angels put on earth. How you do what you do with such grace is an incredible gift and life lesson to the rest of us.... Read More
Saturday, 19 January 2013 22:02
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