The article about Hailey and Livy has been posted on the Tampa Bay Times website. There are also videos and slideshows on the page as well. We are so impressed with the wonderful job Rebecca Catalanello and Melissa Lyttle have done with the story of our girls. It is remarkable how much detail they captured and how well they got to know our family.
Livy's Hope Blog
The Tampa Bay Times is going to be featuring a story about Livy and Hailey in this Sunday's paper (July 15). Our family has been followed by one of their reporters and photographers for the past five months. They became interested in the story of our girls when they heard about Hailey's Young Hero award.
For our local friends and supporters, check out this coming Sunday's Floridian section of the paper. We will be sharing a link on this blog to the story for our "out-of-town" friends and supporters as soon as we have it.
I was finally able to finish putting the video together of our presentation at the Family Café Conference. I broke it into 4 parts since it is rather lengthy. We had a wonderful experience and met some great people. They must be great if they were willing to listen to us for an hour:) Hailey did an amazing job and was incredibly poised in front of everyone. After watching the videos, anyone familiar with the movie Monster's Inc. will understand the joke regarding Hailey and Mike Wazowski. For those of you who do not know about the Family Cafe Conference, it is an annual event held in Orlando that brings together individuals with disabilities and their families with state agencies, non-profit organizations and other service providers, so families can network with each other, learn what services are available to them, and find out the best way to go about accessing those services.
Our presentation as it appeared in the program was:
Summer is in full swing and we are all keeping very busy. Livy has been attending the ESY (extended school year) program at her school. It is a shortened day and only four days a week but it allows her to keep working on her skills so they are not lost over the summer break.
We had a wonderful presentation at the Family Cafe in Orlando! We were a bit worried about Livy because the day before she woke with a long seizure and slept most the afternoon. But it all went off without a hitch and she did beautifully. Jon is working on the video and hopes to have it up soon. It was a very positive experience for all of us and we met some wonderful people. Hailey had a blast the entire weekend. We hope to do this again next year.
Parents of children with disabilities have been entrusted with unusually challenging situations. Most if not all at one point or another have woken up one day and thought, "How am I going to keep doing this?" We often ask ourselves during extended hospital stays, "How did my life get to this point?" When Allison and I were at Shands Hospital in Gainesville during one of Livy’s many long stays, I used to look out the window at the road leading away from the hospital and imagine just driving off into the sunset. When we were at All Children’s Hospital in St. Petersburg, I would look out the window at the cruise ships passing by and think, “Those people are so lucky. They are going on vacation and don’t have a thing to worry about.” Believe me, I was so jealous. When we were at restaurants, I would watch families walk by, the kids running and jumping, full of smiles. Every family seemed to be the perfect family. And how easy I bet they had it. They could fly somewhere for a vacation or go to Busch Gardens and not have to worry about seizures or medications or if their children would ever walk or talk.
It took quite a while for me to finally look through a different window. I started by looking at Livy. Her eyes and smile are windows into a life that is pure and a source of unconditional love. Hailey’s personality is a window into how Allison and I deal with Olivia’s situation. Kids look through the windows of their parents’ experiences to try to make sense of the world. Hailey has learned so much about life in such a short period of time.
We would like to extend a big welcome to our new friends that attended our presentation at the Family Café Conference on June 16th in Orlando. Thank you so much for taking the time to listen to what we had to say.
I don’t know what it feels like not to be able to speak or to communicate how I am feeling. What if I was in distress but couldn’t tell anyone where it hurt? What if I was hungry or thirsty but couldn’t form the words food or water. What if I simply wanted to say thank you or I love you but my body didn’t allow me to vocalize it or use sign language to express it?
It is always a challenge giving Livy a bath. She is getting heavier and longer and outgrowing our current set up. This video will show you how we lower her into and lift her out of her bath chair. We have discussed various possibilities with a contractor to add on a bathroom that will accomodate her for years to come. We would be able to roll her bath chair in and out of a shower or use her lift to put her in her chair. At this point, Livy is the only one who looks forward to bath days. But since she is happy during and after, we are happy too. Enjoy and thanks for reading!
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Hailey has created another bracelet in support of Livy's therapies. She finished beading the bracelets requested as a result of the Bay News 9 interview and got right down to something new. Please click here to bid on "A Petal's Wish". We are working on a video to show Livy in action during her last therapy session so stay tuned. Thanks so much for following Livy on her journey.
Here is the Everyday Hero video of Hailey and Livy on Bay News 9 for those of you who were not able to see it. Allison and I had such a wonderful day and we were so humbled by the outpouring of support.
Hailey also had a great day. She was able to watch the video on TV in her classroom with her friends. I still don't think she completely understands the significance of all she has done. As she says in the video, she does it because she loves her sister. Her devotion at such a young age is amazing and she wears the title of hero with grace and humility. We can only hope that as she gets older, she continues to exemplify the qualities she has exhibited toward Livy thus far.
Good Morning! It has been a very exciting day for our family. Hailey and Livy are being featured on our local news station BayNews9. They nominated Hailey as an Everyday Hero and the segment is airing :53 minutes past the hour every hour today! The story is also featured on their front page news: http://www.baynews9.com/ The story is titled: HERO: Girl Raises Money for Disabled Twin Sister.
We will be posting the segment this evening for those of you out of the area and who do not have Brighthouse. Hailey's teacher had it on for the class today as well so I am sure Hailey was enjoying her moment.
It seems as though our second home is Michaels or Joann Fabrics, also known as the "project store". We make many visits to the project store so Hailey can pick out the beads she needs to make her bracelets or to purchase the paints she uses for her paintings. On this outing, we wanted to take everyone along so you can see how Hailey selects her beads. She has a great eye for colors and patterns and is able to assemble a bracelet in her mind before actually putting it together.
We are so proud of her for taking the time to do this for her sister. She still doesn't realize the magnitude of what she is doing or the impact she is making. She would say she does it because she loves her sister and she wants to be with her family. I can't think of any better reason.
The Lemonade For Livy 2012 fundraiser starts this Saturday, May 26th and runs through Sunday, August 26th. We had a lot of fun last year with great participation. We are hoping to make this year bigger and better. The kids who created stands did a wonderful job and really looked forward to selling their lemonade. They all learned a valuable lesson in helping others in addition to competing for the most creative stand. We had some adults participate as well so there are no age requirements to enter a stand. For more information about dates and supporting materials, please click here.
Hailey is really excited about setting up her first stand on Sunday, May 27th. To get the word out and to demonstrate some creative themes, she helped us make this entertaining video. She was such a great sport. She required little direction with the scenes and came up with almost everything on her own. The unconditional love she shares with her sister truly shines through. We are so proud of her for all of her selfless acts of kindness. Please take a moment to watch and share with as many others as possible. The direct link to the video on YouTube is http://www.youtube.com/watch?v=8vS9FoqrmSc if you would prefer not to share the blog link.
Mother's Day weekend was a lot of fun. The four of us went out to lunch to one of our favorite restaurants in Safety Harbor called Green Springs. The girls and I got Allison a chiminea for our back yard and she was so excited. She has always wanted one. That night, we sat under the stars and toasted marshmallows. It was a perfect day. On Sunday, we enjoyed brunch at my in-laws' house. Mimosas and Bloody Mary's were flowing along with a full spread of appetizing breakfast delights. Another great time had by all.
Monday, when I got home from work, I was greated with the amazing news that Livy had rolled over to her stomach. Allison snapped this picture to capture the moment. Livy hadn't done this in over a year so it was a big deal!
This is Hailey's last auction before Livy's intensive therapy starts next week! Please click here to bid on "Sea Wish". It reminds me of a day on the beach. Thank you all so much for supporting Livy. We are hoping for a very successful session and will be sure to keep you all updated.
Today I was picking Livy up from school and on the way home I came across a radio station I never really listen to. I heard a very interesting sounding woman telling a story during a segment of her message "Sportin A Tude". Her name is Patsy Clairmont. Patsy is an author and speaker and offers spiritual and emotional hope to those in need.
Her story was about a plane trip she had taken. She realized that the only seat left on the plane was a middle seat. The last thing she had wanted was to have to sit between two people for the trip. No one really seems to like the middle seat. But, we have all been there and we know it has its problems. That is why my mom taught us early on to get a letter "A" on Southwest!
After watching the movie A Dolphin Tale, we decided to take the girls to the Clearwater Aquarium. For those of you who have not seen the movie, A Dolphin Tale is the story about Winter, a dolphin who lost her tail after getting caught in a crab trap. Winter was nursed back to health at the aquarium where she was fitted with a prosthetic that enables her to swim. She became an instant sensation and inspiration to many of those with disabilities. People from all over the world travel to see her and to experience her amazing story.
While at the aquarium, we saw Winter and had a close encounter with her friend Hope. Both the girls really enjoyed the experience. Dolphins are amazing creatures and Winter's will to live and persevere is an example for us all to follow.
Welcome to the new and improved Livy’s Hope blog. A big welcome to all of you who were following Livy’s progress through the CarePages website. We hope that you will continue to follow Livy’s progress and all that we do to support her. In order to make our blogs easier to maintain, we have decided to combine the Livy’s Updates, Inspire Me! and Art By Hailey blogs into one overall Livy’s Hope blog. We intend on creating more entertaining videos, detailing inspiring stories and keeping you better up to date on Livy’s progress.
Many of you have told us “I don’t know how you do it.” The truth is, we could not do it without the love and support of so many. The encouragement and caring from all of you inspire us to stay positive and to keep us moving forward. We hope you will continue to visit us at Livy’s Hope and share our story with others. We are only just beginning in our quest to educate, advocate and inspire!