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Livy's Hope Blog

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Endless Wishes

Jon-with-Candle
After a year of Special Needs Dad 365 on Facebook, I thought it was the right time to get back to our official blog space. I have taken a little time off from writing to let the creative mind have a bit of a break. Coming up with a different topic every day for a year was difficult. Especially on those not so good days. I'm happy to say that the Li...
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Guest — Barbara Talbi
Happy Birthday! Sending positive thoughts that this year will bring fewer episodes than the years before. We can never give in o... Read More
Sunday, 26 January 2020 18:23
Jonathan Scheinman
Thank you Barbara. I agree. We should never give up hope!
Sunday, 26 January 2020 19:46
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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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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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Grandpa's Wish

My mom and dad took me out to lunch today for my birthday to my favorite restaurant. It was such a treat and I loved spending the time alone with them. We are usually surrounded by my girls or my sister's son so this was quality adult time. We got to talking about a wish my dad has always wanted, to spend a vacation with all of his kids and grandkids. Sounds like a perfectly reasonable and typical request from a grandparent. Growing up I spent many vacations on the road with my family traveling to Chicago, Nashville and the Smokey Mountains. We were even able to go to Europe as a family (my mom wouldn't go without us kids). I have so many wonderful memories of a childhood filled with lake swimming, water skiing, hiking, alpine sliding, and so many other great adventures. We were lucky.

Jon and I know how important it is to give our family adventures as well. But reality is, we aren't living in the same reality. As parents of a child with special needs, we know too well the difficulties that come with traveling away from home. We have tried as a family days at Disney, hotel sleepovers, trips in the car. They all came with hardships that took the fun out of the "vacation". 

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Recent Comments
Guest — Carol
This probably isn't even a little bit realistic on my part, but as I read this I was thinking of a fun visit we made to our middle... Read More
Friday, 12 October 2012 18:15
Guest — Susie Rich
Happy Birthday, Alli!! I hope you will never again question the life that you and Jon have made for your wonderful children. So w... Read More
Friday, 12 October 2012 18:57
Guest — Kathy
HAPPY BIRTHDAY ALLI! I remember your family vacations. I loved when you would visit us in NY. You always came with Dunkin Donut... Read More
Friday, 12 October 2012 20:09
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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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Visiting Winter The Dolphin

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.

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Bath Time For Livy

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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Guest — Carol Lee
Thank you for sharing this part of your/Livy's day. lots of hugs, Carol
Tuesday, 12 June 2012 01:19
Guest — stavria
You can get a leg extension piece for the bath chair so you don't have to lower her down into the tub. It will make a world of dif... Read More
Tuesday, 12 June 2012 10:36
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Road Trip To The Project Store

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.

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Guest — Palotas Family!
That was awesome, thanks for sharing ! Thanks for sharing. We think that it's amazing what Hailey is doing and can't wait to get... Read More
Monday, 04 June 2012 10:22
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