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Livy's Hope Blog

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Jonathan Scheinman

Don't Give Up. Give Back.


Most of us will face a traumatic experience at least once in our lives. Where we feel we can no longer keep going. Where every day seems like it is a fight just to get through. We wish our days away hoping for an answer. Am I on the right path? Am I strong enough to make it? How will I keep going? We have been in that very same position with Livy a number of times. For years, we didn’t know how we could function in a normal capacity ever again. We were angry. We were heartbroken. We were devastated, confused and lost all at the same time. And most of all, we were so sad for Livy and all she went through.

Our last major hospital stay due to uncontrolled seizures was in April of 2010. It had been a year since Livy’s hemispherectomy operation. We were gradually starting to see her seizures get worse. We asked ourselves, “What are we going to do this time? She can’t have any more surgeries?” Allison called me from the pediatrician’s office since we always follow protocol to make sure nothing else is going on. Shortly after the doctor assessed her, he said, “Get her to the hospital, now!” and off we went.

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Jonathan Scheinman

Are You Wearing Purple For Someone Today?

Today, March 26th, is World Wide Purple Day, 2014. It is a day when people from around the world don their purple to support those with epilepsy and to raise awareness. It is a day when we remember all those who have lost their battle with the disorder. For those warriors that continue their struggle each and every day, we want you to know that you are not alone and that we will fight with you.

Livy was up early this morning at 7:15. I let her know that it is Purple Day and that I am wearing purple for her. I reminded her that I will do everything I can to help her and that I will always be there for her when she needs me. I made that promise to her years ago and it is one I will keep for as long as I am living. I also told her that I am wearing purple today for her friend Taylor and her family who are currently having a very difficult time. Her friend Georgie and his family who have been through so much. Her friend Gabe and his family who deal with dozens of seizures daily and her friend Anna and her family who struggle every day.

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Allison Scheinman

Are You Ready For Purple Day - March 26th?

Are You Ready For Purple Day - March 26th?

Join us on March 26th - A World Day for Epilepsy Awareness!

Purple Day was started by a little girl named Cassidy who struggles with Epilepsy. "Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone."

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Allison Scheinman

They Are The Champions

They Are The Champions

I spent this past week with Livy at another intensive therapy session. In the past, she was able to endure the typical three week course but we have had to scale down to one week at a time. She was fatiguing after about a week and half and with the exhaustion came increased seizures. No thank you.

This week we met a very cool kid who was going through an intensive session as well. I have seen many kids endure these very difficult workouts and each time I find myself in awe. We are talking three hours a day, five days a week for three weeks straight. I see the pain in their faces and hear the ache in their voices. These kids are pushed to their limits to do the simple tasks so many of us take for granted.

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Allison Scheinman

Pedis, Hips and CBD

Pedis, Hips and CBD

A long overdue update on our little sweetheart.

The past few months have been pretty stable for Livy. She continues to have some rough patches but they are short lived and manageable. We can't believe the girls turned nine in December. And with each year comes new challenges. As Livy grows, it becomes more difficult for her to keep up with the weight of her body. This makes the task of trying to sit up a big feat. We continue to encourage her to use her arms to hold her up but she resists using her left arm and hand. To this day, the only thing she will hold onto in that left hand is another hand or finger. Maybe just the human touch is all she prefers (or all that she can tolerate).

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Allison Scheinman

This Ending Is Only The Beginning

This Ending Is Only The Beginning

What an amazing year it has been! We never could have imagined we would have been able to accomplish all that we did in one year's time. The last few months were particularly busy and seemed to go by in a flash. Livy's Hope has made such a difference in our lives and we hope in the lives of others as well. I have a feeling this is only the beginning of something bigger and more inspirational.

We are excited to share with you that our video "I Am Hope" for the Livy's Hope For A Cure campaign has been chosen as a finalist for the WEDU Be More Awards! The ceremony will be held on February 20th in Tampa. This is a wonderful honor and we are so proud to be among the finalists.

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Allison Scheinman

Final Days for Holiday Shopping at Livy's Hope!

Final Days for Holiday Shopping at Livy's Hope!

Are you still looking for that special something to give? Choose from a variety of bracelets by Hailey, a Livy's Hope ornament, Art by Hailey stationary or a Livy's Hope Kitty. Any gift you give is a gift that keeps giving. All proceeds benefit the programs of Livy's Hope.

Tomorrow, December 19th is the last day to order gifts from the Livy's Hope shop in order to have them arrive in time for Christmas!

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Allison Scheinman

"Believe In Hope" Original Painting - Art by Hailey

"Believe In Hope" Original Painting - Art by Hailey

"Believe In Hope"

Hailey has created this festive holiday painting to raise money for Livy's Hope!

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Jonathan Scheinman

I Imagine A Cure

When I look into Livy’s eyes, I know more is going on than there seems to be. She can’t talk or communicate in the typical fashion, but she has her own way of letting us know how she is feeling. Most of the time, we are kissing her and hugging her. So her smile lights up the room. She is just like any kid who feels the genuine love of her family. When she is uncomfortable or hurting, she tells us by her sounds as well as increased seizure activity.

I often put my head against hers and whisper, God, please let me hear what she is thinking. Just this once. My prayers have yet to be answered but if I really listen to her sounds and look at her facial expressions, I can almost get there. Sometimes my imagination gets the best of me. Is she scared or confused. Does she feel lonely or trapped? Does she want to say something but her brain won’t let her get the words out? Does she want to tell us she loves us?

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Jonathan Scheinman

Lucky Friday The 13th

Lucky Friday The 13th

I am still amazed by the fact that it only takes a simple smile or a kiss to bring me back to when Allison and I first met. After 15 years of marriage and a total of 18 years together, it is easy for one to forget what it was like all those years ago. But we like to keep those memories alive. We still reminisce about what we did before having kids. What did we do with all our free time? Life was so simplistic back then. But what we realize is that our lives now are much more full of love and purpose than we ever thought possible.

This year has been especially crazy. Just living life, working and Hailey and Livy’s daily schedule (especially all Livy’s doctor’s appointments and therapy sessions) can be hectic. But we have also been running our Livy’s Hope For A Cure campaign along with our regular Livy’s Hope work. Not to mention, our house has been undergoing renovations to make it more handicap accessible. Allison has often said that if we don’t kill each other by the time this is all done, it will be a miracle. As we are finding out, it takes an amazing commitment to run a six month fundraising campaign.

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Allison Scheinman

Holding Back On Big Expectations

Holding Back On Big Expectations

Change can be a really good thing but it can be difficult too. This time of year brings on a change in all of our lives. So much excitement and build up for the first day of school. The night before, outfits are put out, backpacks are ready to go, lunch is made and we all imagine how the next day will play out. Hailey was bundled with excitement especially having learned she is in the same class as her best friend for the fourth year in a row. She had missed school a lot and was eager to get settled back in. I think the night before the first day of school is like Christmas Eve to her. This makes me so happy, I love that she loves school. Jon and I don't remember having been that eager!

As parents, we always wish for a great start to the new year. After we drop our kids off, we pray the day goes smoothly. We hope our kids like their new teacher, that the kids are nice, and that something fun and memorable happens that day. We will badger our kids with questions when they come home, trying to recreate their day in our minds.

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Allison Scheinman

Art Auction by Hailey "Summer Breeze"

Art Auction by Hailey "Summer Breeze"

August is the month of AUCTIONS for Livy's Hope For A Cure! We are asking people to create something original or find something they no longer want and auction it on eBay or sell it at a yard sale. Then, donate the money to help fund epilepsy research. 

Hailey has created this beautiful landscape of the Gulf of Mexico viewed from Dunedin, FL. The bidding begins today and ends in three days. Don't miss your chance to win this artwork and at the same time help the Epilepsy Foundation to fund research for a cure! Click here to visit the auction.

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Allison Scheinman

Hailey's HOPE Necklace - Ending Soon!

Hailey's HOPE Necklace - Ending Soon!

There is just over one hour left to bid on Hailey's latest jewelry design (Auction ends at 3:00 PM EST). Click HERE to BID NOW. All proceeds benefit Livy's Hope. Thank you and have fun bidding!

"HOPE" Necklace

  • Black Beads
  • Silver Spacers
  • "HOPE" Letter Charms
  • 19" beaded on wire
  • Silver Magnetic Closure
  • Designed by "Art by Hailey" - Hailey is Livy's twin sister
  • FREE SHIPPING
  • www.livyshope.com
  • Proceeds benefit "Livy's Hope"
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Allison Scheinman

$50 Gift Card Giveaway to Coolhubcaps.com!

$50 Gift Card Giveaway to Coolhubcaps.com!

Livy's Hope is having a great GIVEAWAY!

Coolhubcaps.com sells really cool wheelchair accessories. They have donated a $50 gift card to use on their website! In order to enter the giveaway, go to their website: http://www.coolhubcaps.com/ and comment on our Facebook page what your favorite hubcap design is and why. 

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Allison Scheinman

You're Kidding Me...Right?

I looked down at Hailey's face as she peered up to me with very serious eyes. Her point was clear. We were going to raise $1 million dollars for the Epilepsy Foundation. "You're kidding me...right?" I asked. She wasn't kidding and she was going to make me believe it. Jon and Hailey asked, "Can we count you in?"

A lot of people are going to think we're crazy. I know this because I thought Hailey and Jon were crazy when they told me what we were going to do. At her age, she does not understand the concept of $1 million dollars. But Jon, he knew what he was getting us into. He and Hailey always talk about grand schemes and outrageous ideas. They talk about inventions, business ideas, ways to combine foods. They are dreamers. They are believers. They are the kind of people that think anything is possible.

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Recent Comments
Allison Scheinman
That is wonderful that Nathan has been inspired to do a fundraiser! Kids are so amazing. They have so much strength and will and a... Read More
Thursday, 13 June 2013 09:30
Jonathan Scheinman

Livy's Hope For A Cure

It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.

After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.

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Allison Scheinman

True Happiness Is To Enjoy The Present

True Happiness Is To Enjoy The Present

Just the other day, I finished listening to the CD book "Knowing Jesse" by Marianne Leone Cooper (the wife of actor Chris Cooper). It is an incredible story about their son Jesse. Jesse suffered a cerebral hemorrhage at birth that resulted in Cerebral Palsy and Epilepsy. Sadly, he died from SUDEP (sudden unexplained death in epilepsy) at the age of 17. The ending was beautiful and inspiring and I was sad to have it come to an end. And then, as though someone knew I was still in need of inspiration, a great story came on NPR.

It was about two men, Ben Harris and Scott Haren, both who suffer from ALS, the degenerative disease also referred to as Lou Gehrig's disease. These two men have been trying different experimental medications to treat themselves. They both realize they are coming close to the ends of their lives, but they have incredible perspectives. Although these experiments may not have completely worked, Harris does not look at them as failures because he is able to share the information with other ALS patients and they may one day be able to benefit from what he learned. Haren tries not to focus on the things that he can't do but the things he can do.

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Allison Scheinman

Days Worth Remembering

Days Worth Remembering

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...

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Jonathan Scheinman

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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Allison Scheinman

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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