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Livy's Hope Blog

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Rocked It & Butterfly Beauty

Rocked It & Butterfly Beauty

GREAT first day at therapy today! Really one of the best days at intensive ever. Smiled from start to finish. But the best part was at school afterwards when we all got to celebrate her best friend Georgie's 9th birthday. They have been friends over six years! Hailey played "Happy Birthday" on the guitar and sang for him too. Just an amazing day.

Another beautiful bracelet is up for auction designed by Hailey. I love that this one has a magnetic closure and the colors are great together. Happy bidding and thank you for your support! Click the link below if you would like to bid:

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Recent comment in this post
Guest — Vera Lane
I agree, this is a beauty! So glad you had a good time at Georgie's party and that Hailey could, once again, perform her wonderful... Read More
Tuesday, 02 October 2012 11:13
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Team Livy

Team Livy

Tomorrow Livy starts another round of intensive therapy. For all of those out there rooting today for their favorite football teams, we'd love for you to join Team Livy too!

The last intensive session was incredibly difficult for her and we are crossing our fingers tight that this session will be different. We have completely weaned her off another seizure medication since then so we can only hope she is stronger and more alert then before.

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Recent Comments
Guest — Heidi Fletcher
Livy, we are all cheering for you! You are so very strong in body and spirit and I pray that you breeze through this therapy witho... Read More
Sunday, 30 September 2012 14:57
Guest — Rebecca Catalanello
Go, Livy, go!
Sunday, 30 September 2012 14:57
Guest — Jann Gullick
Go Livy! You can do it!
Sunday, 30 September 2012 15:02
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  14 Comments

Our America

This past weekend, I watched the movie Act of Valor. The movie is described as “The mission of rescuing a kidnapped CIA agent from a lethal terrorist cell falls to an elite squad of Navy SEALs in this covert-action thriller. Active duty SEALs play the lead fighting roles in a saga based on actual events from their service.” On the surface, that would aptly describe what transpires. But there is a much deeper meaning. For anyone who has been in the armed forces, it is evident. The real meaning lies in the ultimate sacrifice that soldiers are willing to make to defend our country.

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Guest — Karen J.
Read your blog, then listened to Carmen's song. Both wonderful. I can relate to a lot; my son, was a Major in Special Ops for 20... Read More
Tuesday, 25 September 2012 23:08
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"The Lucky One" Bracelet - Art by Hailey

"The Lucky One" Bracelet - Art by Hailey

Hailey is sending a little luck your way...she has created a bracelet titled "The Lucky One" and it is up for auction now. She was so busy yesterday creating some really great pieces. When she gets on a roll there is no stopping her. So, who will be the "lucky one" to win this bracelet and help support Livy's Hope?

Please click this link to take you to ebay and have fun bidding!

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Guest — Carol Lee
Hi, Hailey, Another gorgeous bracelet, but I lost the bid... hugs,
Monday, 24 September 2012 23:50
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Gearing Up

Gearing Up

It's that time again, time to gear up for intensive therapy! For those of you that read about Livy's last intensive session, you know it wasn't a hit. For some reason, the physical exhaustion took over and Livy just couldn't get through the first two hours of each day, never mind the whole three weeks. She would fall asleep and then startle with a seizure each day. After a week and a half of really trying, we decided to put it on hold.

Her next session is scheduled for the first week of October. We are going to attempt a one week session to see how she tolerates it. She seems stronger and more stable so we are hopeful. But Livy calls the shots.

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Recent Comments
Guest — Harold
Good luck Livy! We're cheering for you!
Thursday, 20 September 2012 15:02
Guest — Becky
So happy for your good news! Thanks for sharing! Your whole family is inspiring!
Thursday, 20 September 2012 18:36
Guest — Looking for Blue Sky
Every day I thank God that despite all my daughter's difficulties, at least she doesn't have seizures, so hard on all ofyou xx... Read More
Saturday, 29 September 2012 17:34
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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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Recent Comments
Guest — David George
Happy Anniversary to you both! Your story is inspirational. I stand in awe of your positive spirit. Thank you for sharing your ... Read More
Thursday, 13 September 2012 13:56
Guest — Debbie Hadlock
Happy Anniversary to you both! You are a positive example to all marrried couples that those vows are not to be taken lightly. I... Read More
Thursday, 13 September 2012 15:37
Guest — Sue ullivan
Happy 14th Anniversary Jon and Allison!
Thursday, 13 September 2012 17:26
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Cameras in Special Needs Classrooms

Cameras in Special Needs Classrooms

Yesterday I came across a story on ABC News by Christina NG.

It begins, "A grassroots movement to put cameras in classrooms, driven by the parents of special-needs students, is simmering across the country. It's a personal crusade for many of the parents who say their children have suffered abuse at the hands of teachers and classroom aides with unsatisfying consequences..."

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Livy's Hope: A New Direction (Revised)

Our apologies if some of you received two emails. We were having some technical issues which stopped some notifications from being sent. We also revised part of this post to more adequately convey our message.

Over the last year-and-a-half, we have been blessed by all of you, our amazing supporters. You have been generous with your financial contributions to help with Livy’s therapies through donations and purchases of Hailey’s jewelry. Livy would not be where she is today without our whole team of followers. You have also given us emotional support through your kind words and heart-felt comments. You have proven to us that providing inspiration and hope can go a long way in helping someone get through a difficult time.

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Recent Comments
Guest — Gary Parrish
Awesome! Beautiful! What a wonderful family! Gary Parrish
Wednesday, 05 September 2012 12:29
Guest — Deborah Telles-Palladino
What a wonderful giving thing to do! You never cease to amaze me! Deborah
Thursday, 06 September 2012 03:33
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Livy's Hope: A New Direction

Please click here to read Livy's Hope: A New Direction.

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Follow-Up Article and New Designs by Hailey

Follow-Up Article and New Designs by Hailey

Today has been a very exciting day for our family. The Tampa Bay Times ran a follow-up article from the July 15th story in their Floridian section today about the girls. We were blown away by the response from the article and were so happy to share the support we received. We live in a beautiful world full of so many loving and caring people and Livy's supporters are among them. Here is the link to the follow-up:

Also, Hailey has some new jewelry designs in the Livy's Hope shop. She has been putting her new skills that she learned from the designers at Cousin Corp. to work. Please visit the shop to see the new pieces and some other new special items as well:

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Recent Comments
Guest — Gary Parrish
Your entire family is loved so very much, Allison. What a wonderful conduit you, Jon, and Hailey are for the love and power of Liv... Read More
Sunday, 02 September 2012 12:58
Guest — Carol Lee
Hi, girls...and John! What a family! I'm so happy about the articles and their results, especially the lifetime supplies for Hail... Read More
Monday, 03 September 2012 01:45
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"Lemonade for Livy" Most Creative Stand Contest

"Lemonade for Livy" Most Creative Stand Contest

Please join us on the Livy's Hope Facebook page and cast your vote for your favorite lemonade stand by clicking "LIKE" on one of the photos in the "Lemonade for Livy" Stand Contest album only. Voting ends on Sunday, September 2nd and a winner will be announced on Monday, September 3rd. The lemonade stand with the most "LIKES" will win the contest and be awarded a gift card to Toys 'R Us.

Please "Share" this blog post or the post on Facebook with friends and family as well.

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An Angry Letter

Dear Epilepsy,

I have been wanting to write to you for some time now. It's only just recently that I was reminded again how you can sneak up on a person without warning. You have been a part of our lives for almost eight years now but you still seem a stranger to us. Just when we think we know you and feel like we can control you, you come back showing your ugly face.

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Recent Comments
Guest — Debbie Hadlock
And those of us who follow Livy's story and your family's journey will not allow her to be defined by this illness. As always, yo... Read More
Wednesday, 22 August 2012 13:13
Guest — Stavria
Well said! If it were a petition we would sign it! We always see an increase of Anna's seizures at the beginning of the school y... Read More
Wednesday, 22 August 2012 14:36
Guest — Andrea Guarino
Livy is a light that will always shine. Epilepsy is cruel and mean, but Livy is strong and out-smarting it. Thank God for her and ... Read More
Wednesday, 22 August 2012 14:49
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"Livy's Hope" Black and Silver Charm Bracelet

"Livy's Hope" Black and Silver Charm Bracelet
This is Hailey's first creation after learning new jewelry techniques at Cousin Corp.

She learned how to use beading wire, crimping beads and how to add toggle closures. The wonderful designers at Cousin gave Hailey her very own special tool kit to use. It was amazing how quickly she learned and picked up the new methods. This is just one of a few she has already put together. Thank you again to Cousin for the beads and lessons.

Please click the link below to bid on this beautiful new creation by Hailey. All money raised by "Art by Hailey" creations goes towards Livy's therapy sessions:


Thank you!
Recent Comments
Guest — Debbie Hadlock
Very pretty bracelet, Hailey! I am holding out for another purple one. I wear my orange one often. I also love the cards I won ... Read More
Saturday, 18 August 2012 15:00
Guest — Debbie Hadlock
Very pretty bracelet, Hailey! I am holding out for another purple one. I wear my orange one often. I also love the cards I won ... Read More
Saturday, 18 August 2012 15:00
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The Path Of Hope

My commute each day takes about an hour round trip. I used to listen to the radio, especially NPR. When the news aired, I was listening. But how depressing and boring that got, especially during an election year. One candidate said this about the other candidate and back and forth they went. So I started listening to books on discs. My commute has been transformed into a refreshing, enlightening experience. For those road warriors, if you are not yet doing this, I highly recommend it.

The most recent book I finished is called The Anatomy of Hope by Dr. Gerome Groopman. Dr. Groopman specializes in cancer and other blood diseases. The book deals with his growth as a doctor and an individual in regard to how hope plays a decisive factor in his own life and the lives of his patients. He then sets out to find clinical evidence that hope or the lack thereof can actually influence the healing ability of the body. He goes on to outline how the core components of hope are belief and expectations. Through different types of studies, it has been proven that the brain releases chemicals in the body that can actually mask the effects of pain. Whether hope actually aids in curing certain diseases is still unknown. But what is known is that a person’s ability to heal and move forward step by step largely depends on one’s ability to continue treatment. Hope has a remarkable way of giving a person the strength and courage necessary to endure. Dr. Groopman concludes by commenting that “I see hope as the very heart of healing. For those who have hope, it may help some to live longer and it will help all to live better.”

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Recent Comments
Guest — Gary Parrish
Great Poem, Jonathan! Love it! Gary Parrish Winter Haven, FL
Monday, 13 August 2012 22:57
Guest — Jon
Thanks Gary. Much appreciated!
Tuesday, 14 August 2012 10:20
Guest — Susie Rich
Jonathon, This entire blog posting is so incredibly beautiful. I am in awe of you and your amazing family. I don't know how you ... Read More
Tuesday, 14 August 2012 08:03
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Enjoying The Ride

Enjoying The Ride

What a great summer it has been! We are still coming down from the great high of the newspaper article. Rebecca Catalanello and Melissa Lyttle captured the story of the girls so well. We spent quite a bit of time with them and shared more about our lives than they probably could handle :)

It was an interesting experience recalling all the memories Jon and I have created together starting from the day we met so many years ago in the club in Providence. We dug deep to remember the times we've tried to forget, all those difficult times we had with Livy. Jon found the tapes of video we took early on of the girls and re-living those memories was both amazing and heart breaking. Hailey was able to see the ups and downs of this journey and in some small way understand what we have experienced. We thought of times we held each other and cried at Livy's bedside in the hospital and of the time we celebrated her homecoming. All of this has somehow helped me to truly appreciate where we are now and how amazing our life has been.

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Recent Comments
Guest — Gary Parrish
Beautiful! Thank you, for sharing such a personal story, Allison. What a special family! I am so grateful I saw your story on TV a... Read More
Wednesday, 08 August 2012 22:35
Guest — Deborah Palladino
Allison, you are all such old souls. There is no other explanation! I can't explain it, but I feel that way often when I read wh... Read More
Thursday, 09 August 2012 00:39
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My Olympic Dream

The Olympics, for many athletes, begins with a dream, a hope or a vision of greatness. Some start participating in a sport at a very early age more for recreation and to have fun with friends. Most try a variety of sports over time, some going on to play in high school and college. The majority of kids stop after that time. However, there are those special, gifted athletes that know from the minute he or she steps foot on a court or grips the uneven bars or wades into a pool that an unbreakable bond has been created. It is a bond and a love that is steadfast and guides them in their lives to follow their dreams.

Along the way, there are many sacrifices. The life of an aspiring Olympian is unlike the life of a typical child. Practice occurs year round perhaps three to four times a week or more with competitions also thrown into the mix. Priorities are rearranged and daily schedules predetermined according to the blow of a whistle or a coach’s insistence on getting there on time. Parents’ lives are one car ride after another to and from the practice facility. But on competition day, there is nothing like being a proud parent.

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Recent Comments
Guest — Aunt Cindy and Jim
Go for the gold, Livy!
Wednesday, 01 August 2012 11:12
Guest — Tasvira Patel
Livy, I watch your training sessions at Lampert's therapy clinic every week and you are an amazing inspiration to us all! Keep up... Read More
Wednesday, 01 August 2012 22:44
Guest — Gary Parrish
I'm so proud of you, Livy! What a blessing you are to me and countless others. Sending you all my love and support, sweetheart! G... Read More
Wednesday, 01 August 2012 22:48
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"Art By Hailey" Note Cards Give-A-Way!

"Art By Hailey" Note Cards Give-A-Way!
We thought we would start the weekend early by having some fun and giving away a set of "Art by Hailey" Note Cards! This should be a lot of fun and a great way to feel inspired.
Giveaway starts today...(Friday)
Giveaway closes at 12:01a.m. Friday August 3rd.
Winner announced Saturday,  August 4th.
Open to U.S. Residents Only

Thanks for participating and good luck!

 

a Rafflecopter giveaway
Recent Comments
Guest — Poppi
Hi sweetheart, I hope you ae having fun! Love Poppi
Friday, 27 July 2012 13:13
Guest — Diane Scheinman
Hi Hailey, We love, love, love your Art by Hailey notecards so we thought we would let someone else win and enjoy them! Love, Gra... Read More
Friday, 27 July 2012 15:14
Guest — Gary Parrish
You are so sweet, Hailey! My favorite inspirational quote: "Our deepest fear is not that we are inadequate. Our deepest fear is ... Read More
Friday, 27 July 2012 21:36
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A Message From Hailey

A Message From Hailey

Hi everyone! I just wanted to say thank you for all the wonderful donations you've made. I love Livy so much. I am very happy to help and I am very happy that you are too! You all are very generous.

It was so exciting to be in the newspaper! It is very funny to be recognized by people when I am out shopping in stores with my family. People say things like, "Are you the Hailey from the newspaper?" and "I loved the story very much." Have you read the story yet? What do you think?

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Recent Comments
Guest — Gary Parrish
Hi Hailey! I HAVE ready the story, and it was terrific! You are part of a very special family, and I am so proud of you for every... Read More
Thursday, 26 July 2012 18:05
Guest — Jennifer Rogers
You and Livy are such blessings to everyone. Keep inspiring. Press on and never give up!
Thursday, 26 July 2012 18:35
Guest — Meme
Hi Hailey, You're a great "Blogger!" You and Livy are the BEST granddaughters and I love you very much. You, Livy and your parent... Read More
Thursday, 26 July 2012 19:03
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From The Beginning

Just yesterday I said to Allison, “Did you think seven years ago, we would be where we are today?” Seven years ago, we weren’t thinking about much other than “How can our lives work like this? What happened? Who’s fault was it?” We felt helpless, alone and weak. We were dealing with the devastating fact that one of our twins was not going to have a normal life. We had only just begun to realize that a great journey loomed in front of us.

As we were preparing for the Tampa Bay Times article, I uncovered some old video we had not watched since it was filmed. It was filmed during a time that was fraught with mixed emotion and hopelessness and it resurrected deep rooted anguish. But as I viewed it, wiping the tears from my eyes and the tightness fading from my throat, I saw how far we have come and how much wiser we now are. I also see that our path in life was changed for a reason.

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Recent Comments
Guest — Gary Parrish
That's very kind of you to mention my remarks in your latesr post. My continued love and support goes with you.
Sunday, 22 July 2012 22:22
Guest — Debbie Hadlock
Your family's story has touched me more than I could have imagined! Having been a public school teacher for 33 years, I am amazed... Read More
Monday, 23 July 2012 13:02
Guest — Carol Lee
Well, you made me cry again...with the beauty of you two and your daughters! lots of hugs, Carol
Tuesday, 24 July 2012 16:37
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  4 Comments

New Bracelets and Note Cards

New Bracelets and Note Cards

Hailey has five new bracelet designs up for auction and two "Buy Now" bracelets as well.

Also, there are still more of the "Livy's Hope" official bracelets for sale and the "Art by Hailey" Note Card sets. You can find them all at the link below on the "Art by Hailey" page on the website. As always, all proceeds from the sales will go towards Livy's therapy sessions.

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