Livy's Hope Blog

Welcome to the Livy's Hope Blog!

Endless Wishes

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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Recent Comments
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
Guest — Star
Awesome post. Never give up hope.Hunting for a best home painters and decorators in Ireland or anywhere is a daunting task. But i... Read More
Wednesday, 18 November 2020 13:28
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Hope Will Set You Free

When I picture a prison, I see a cell with three walls and bars. I see the loss of freedoms to go where you want and when you want. I see a very structured life lived by the clock…time for breakfast, time to go into the yard, time for work responsibility. When the lights go out, you are alone. A life sentence for a crime one didn’t commit must be awful. There are continuous questions of why me. There are constant legal battles for retrials. And there is the acceptance that the life one dreamed about will be different. Living this prison life is sure to test the emotions of any sane person.

Having difficult to control epilepsy is very much like living prison life for a handful of reasons. Medications must be given at the same time every day. The freedom to complete activities is often restricted based on the risk of having a seizure. There are many legal battles being fought for those with epilepsy including inequality, discrimination, and the legalizing of cannibidiol as well as rescheduling cannabis so it can be more widely studied. People with epilepsy are innocent. They didn’t do anything that deserves epilepsy. And for many, it is a life-long struggle. But there is also hope. 

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Recent Comments
Guest — Carol Lee
Still sending you love and prayers from San Diego...Pacific side of the US. hugs,
Thursday, 25 August 2016 18:31
Guest — Jon
Thanks Carol Lee!!
Friday, 26 August 2016 09:39
Guest — Emily
Praying for you, your beautiful daughter & family! Keep hope & faith! ❤
Friday, 26 August 2016 12:38
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Epilepsy, I Am Tired Of You

The other morning, I was reminded all too well just how unpredictable epilepsy can be. Livy began having seizures at 6:00 AM and didn’t stop until 8:30 AM. By the time she fell asleep, she had close to 50 of them…50 in less than 3 hours. I sat there with her, wishing them away and then praying them away. “Please let this be the last one. Please, for her sake!” Waiting...then shaking again and again.

As I was stroking her hair to comfort her, I felt the scar in her scalp and the groove in her skull from her brain surgeries. They are in the past but they are also very much in the present. I was there in the moment, sad, so sad for her. She is just a child. After each seizure, she let out a small soft sound as if to say, “Daddy, please make them go away.” The look in her eyes brought me back to the NICU the morning Livy and Hailey were born. It seems we are moving ahead in many areas of our lives but we always have one foot firmly entrenched in the day our lives would change forever ten years ago.

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Recent Comments
Guest — Gary Parrish
My heart breaks for precious little, Livy, and it breaks for the rest of your amazing family, Jon. I will continue to pray for all... Read More
Friday, 24 July 2015 09:11
Guest — Harold Lampert
We're happy to have opened our stand yesterday and proud to stand with you. Your posts serve to remind me that any "stress" I am f... Read More
Friday, 24 July 2015 14:56
Guest — rosesahron
BEST NATURAL TREATMENT FOR HERPES earning that you have HERPES  can be one of the most difficult experiences you go through in lif... Read More
Thursday, 19 November 2020 07:13
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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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Recent Comments
Guest —
Yes. Exactly. I can so totally relate to what you are feeling. Prayers for Livy to have a better day! ... Read More
Tuesday, 20 August 2013 11:20
Guest — The Cottons
We hope today is a better day for Livy, and we wish Hailey a fantastic start to the school year!
Tuesday, 20 August 2013 11:21
Guest — Margie
Hugs to all of you ... I hope today is much better...
Tuesday, 20 August 2013 12:38
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Hanging In There

Livy's seizures increased dramatically Friday evening and she was taken to intensive care. She had been given Ativan multiple times and also a dose of Diastat. After no success, the doctors gave her a loading dose of Dilantin and Depakote. She finally settled down around 5am on Saturday. The rest of the weekend she was pretty quiet. With the addition of all of these new medications she tends to be very lethargic and not at all herself.

She had a flurry of seizures around 9:00 last night. Another dose of Ativan put her to sleep and she slept, as far as I could tell, all night long. She woke this morning with another shorter and milder flare up and she did not require another dose.

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Recent Comments
Guest — Kathie
Praying for this precious little girl that her little body can fight off these horrible seizures. Also praying for strength for he... Read More
Monday, 29 October 2012 14:25
Guest — Paige and Ivan
Keeping Livy in our prayers!
Monday, 29 October 2012 18:51
Guest — Ms. Tracy
Livy I mis you sweetie. You and family are in my prayers. Get well, Im having livy withdraws.
Tuesday, 30 October 2012 10:22
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I Am Livy

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?

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Recent Comments
Guest — Paige
Ivan and I love this video. We feel Livy's strength and hope when watching it and we know how incredible her family already is---... Read More
Tuesday, 19 June 2012 09:52
Guest — Carol Lee
So beautiful, it moved me to tears. many hugs, Carol
Tuesday, 19 June 2012 10:38
Guest — Joanna Cavanaugh
I appreciate all your beautiful videos and to see what ALL of you have done,not just for Livy ,but for all of us only able to view... Read More
Thursday, 21 June 2012 20:29
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Live Well, Laugh Often, Love Much

As 2012 begins, I reflect over 2011 only to find that I am not living the life I want to live and am not the person I want to be. I am sure I am not alone in this assessment. Therefore, in 2012, I plan to live well, laugh often and love much. This is not so much a New Year’s resolution, but a pact with myself. It is a conscious lifestyle change that will take work but will lead to peace, happiness and closer relationships.

Instead of giving something up this year, I want to add value to my life and others’ lives. Making a difference in the lives of family, friends and even complete strangers seems like a life worth living. Living Well is not just about traveling, eating at the best restaurants or having a lot of fun. In my opinion, the people who are most remembered are those who help others or change lives through their generosity and selfless natures. And yet, so many of us pass up the opportunity to do so. I want to wake up each day and be excited about life. Most people work in a job or live a life that doesn’t appear to serve any real purpose which leads to a lack of creativity and a lust for a better future. We torture ourselves into believing if I only had more or if I only had the perfect job, life would be so much better. Well, life is what you make of it. The way I see it and to take a quote from the movie Shawshank Redemption, “It comes down to a simple choice, get busy living, or get busy dying”. Hope and choice are two underlying themes from this movie and both are controlled by each and every one of us. They are intertwined. We all have the choice to bring hope into our lives and to spread that hope to others. We have been given the gift of choice; each day is what we make of it. Each day should be lived as if it was our last.

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Never Quit

I am often reminded of what my high school soccer coach said to me during a preseason game over twenty years ago. We were playing a team from a nearby town that happened to have one of the best offensive players in the state. Lucky me, I got to cover him on defense. Midway through the second half I was clearly tiring. My coach noticed this and yelled to me, “Jon Scheinman, you are one of the guys who are never coming out!” The implicit meaning of his exclamation was that I needed to be ready to play the whole game, to come prepared both mentally and physically and to always give everything I had on the field.

It is often said that we are a sum total of all our experiences throughout our lives. But over the course of time, there are those gems that are forever fused with the fabric of our identities. For me, this is one of those statements.

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Guest — brian morrissey
We had great coaches in soccer and life. I heard them yelling at me every time I am on a run....they are still chasing me down map... Read More
Tuesday, 22 November 2011 10:19
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Partner For Life

It is said that the relationship between a husband and wife transforms after having kids. The focus changes from each other to the little ones pining for attention. Romantic evenings are replaced with sleepless nights. Last minute get-a-ways turn into months of planning for a Disney vacation. A peaceful movie together turns into play, pause, play, pause as we attempt to get some semblance of privacy. By no means am I saying these things are bad. They are just different. I would never give up the family I have today. They are my world.

To some extent, I was prepared for this type of transformation. Obviously, Livy has brought an entirely new perspective into the equation. That I was not prepared for. But as most things in life that are unexpected, one learns to adapt. In our case, we attempt to view the situation in a positive fashion by sharing our experiences with others in order to bring light to a side of life often kept in the dark. There are many clichés to describe our situation, making lemonade out of lemons, what doesn’t kill you makes you stronger, you must have been chosen for it because you would be able to handle it and the list goes on.

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Recent Comments
Guest — Diane
Happy Anniversary to a most wonderful couple! Lots of love, Diane
Tuesday, 13 September 2011 22:03
Guest — Keely McFarlane
A journey such as this has ended many relationships. It is work to keep a "normal" marriage functioning much less one that has str... Read More
Wednesday, 14 September 2011 08:17
Guest — Cindy Karwowski
Your message of love is so beautiful! Happy Anniversary! Love, Aunt Cindy and Jim
Wednesday, 14 September 2011 10:30
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Livy's Intensive Therapy - August 2nd

Livy has started her second week of intensive therapy. She did show signs of fatigue over the weekend but was up and ready to go Monday morning.

The first thing the therapist does each morning is put on heat packs and then stretches and massages her. What a great way to start the day! Then they move onto weight work on the table. The therapist has been alternating her arms and legs each day. The next step is putting on the Therasuit. One of our goals for Livy is to gain strength and control in her quadraceps so that she can learn to bear weight through her legs. One way they are working on this is by standing her with one leg immobilized to try to get her to initiate pushing through the other leg. One of the videos to the left demonstrates this idea. It is a challenge for her to tell her brain to tell her leg what to do. Cerebral Palsy, one of Livy's other diagnoses, inhibits her brain from communicating with other parts of her body. That is why we are trying to "train" her brain into learning how to create these pathways.

Livy also does sit-ups and back extenstions, both which she does very well. Her core is quite strong but her length is what makes everything so challenging. These exercises will help her reach one of her goals which is to roll herself over from side to side. She still is not able to reposition herself while sleeping so Jon and I get up almost nightly to turn her and make her more comfortable. It would be a great improvement if she could learn to move herself. She basically can roll to her right side but cannot roll to the left. A lot of it has to do with the loss of muscle function/control on her right side due to her hemispherectomy. We are hoping that with repetitive movements, she can learn how to roll in both directions.

Each day we know she is gaining strength. She continues to smile through nearly all the exercises even though they are exhausting. Jon and I can't say enough about how important the intensive therapy sessions are for her. 
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What If...

As a parent of a disabled child, I constantly find myself asking “What If”. What if we had two healthy twins that could play and talk together? What if we didn’t have to live by the clock to administer medications? What if we could celebrate a holiday and not have to worry about seizures or ending up in the hospital? What if Olivia was able to tell us how she feels and where it hurts? What if I could wake up one day and Olivia could look into my eyes and say, “Daddy, I love you.”

What if. Those two little words that will forever keep me wondering. Every day is a struggle to let go of the dreams we had that will never quite turn out the way we thought they would. Most parents envision their kids going to school, then to college, then getting married, then grandchildren and a host of other things in between. I have now replaced those thoughts with hope. Hope that Olivia will be able to sit up by herself and watch her sister showing her a new Barbie. Hope that Olivia will one day be able to conjure up enough strength to take that first step by herself even if she is wearing leg and arm braces. Hope that one day Olivia will be able to raise her head and simply say hi. And hope that if nothing else, I can tickle her and she will know for an instant what it feels like to laugh.

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Siblings Of Kids With Special Needs

Siblings of children with disabilities are very special individuals. They are exposed to a life that the majority of kids will never know. They see their parents go through physical and emotional distress dealing with incredibly difficult situations and decisions. These kids are often shuffled off in tow to doctors and physical therapy appointments, hospital visits and equipment fittings. In the same trip, they may also have a play date and birthday party to attend. Holidays are typically celebrated at home or very near by while friends are flying or traveling long distances to celebrate with relatives. Vacations as a family can often last for only a long weekend since leaving the security and comfort of home can test the patience of even the most seasoned parents.

These children tend to think of the abnormal as normal. They are remarkable and develop an understanding for a part of life that is seldom in the public spotlight. At times, some rebel because the desire for a conventional life is so great. Often their characters glow with empathy and acceptance that is nearly impossible to teach unless lived first hand. They tend to spend an abundance of time with grandparents and other relatives, learn the importance of family support at a very early age and are able to make a positive impact on other kids and adults by sharing their experiences.

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Recent Comments
Guest — Kelli McIntosh
Thank you for this post; so well written and exactly the thoughts I think about my own situation. My son is 7 and has special nee... Read More
Friday, 03 May 2013 19:55
Guest — Alana Terry
Yes, I love the idea of siblings being unsung heroes. My oldest son is an amazing, compassionate 7 year old and went through so mu... Read More
Friday, 03 May 2013 22:27
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"My Story" Magazine Article

A few weeks ago, we were approached by a friend asking if we would like to write a story about Olivia and our family that would appear in a local magazine called Tampa Bay Good Living. The goal of the magazine is to "to inform, inspire, encourage and celebrate healthy, happy and good living here in Tampa Bay and beyond." The editor felt that we had an inspiring story to tell. The next issue is due out just before Father's Day, so they thought writing the article from a father's perspective would be insightful. Thanks very much to Jenny and Pam who made it all possible!  

My Story
by Jonathan Scheinman

I once thought the role of a father meant raising your kids to be the best they can be, to give them all the opportunities to succeed in life and to support your family in whatever way necessary. What I discovered when my twin daughters were born is that the responsibilities of a father are so much more. Hailey was born first and was perfectly healthy. Olivia arrived an hour later. Soon after birth, Olivia began having seizures.

After several turbulent years, Olivia’s diagnosis was determined to be multi-focal, partial epilepsy caused by a general brain malformation. She has been through a multitude of hospital stays including two for major brain surgeries. Both put extreme emotional and physical stress on our family and my relationship with my wife Allison, causing me to frequently ask the question, “Would my life be better with or without Olivia?” An odd question to consider regarding your own child, but as a father with a daughter who has numerous disabilities, it was unavoidable. Our idea of normal had been twisted and completely turned upside down.

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Guest — Lori Cotton
Happy Father's Day, Jon. You are an amazing father, and an inspiration to us all.
Friday, 17 June 2011 22:49
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