Livy's Hope Blog
There are many times in a father’s life when he is proud of his young child…when she is taking her first steps, speaking her first words, learning how to ride a bike and the list goes on. Back in November, we submitted an entry for Hailey for the Pinellas County’s School Young Hero award. We nominated her because of her dedication and devotion to her sister Olivia as well as her outstanding academic performance. She received two letters of recommendation, one from her principal and one from her kindergarten teacher. The description of the award is as follows:
“The Pinellas County Schools’ Young Heroes award program was created in 2007 as a way for the district to honor students who have overcome adversity, excelled in academics or given back to their community. These students have perseverance, strong work ethics, and are character role models. Six students are honored each school year, (one elementary, one middle and one high school, per semester). To date, the district has recognized 25 Young Heroes.”...
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....
We have some unfortunate news to share. There was another incident at Livy's school a little over a week ago. For those of you that have been following Livy's progress for some time, you know that her left femur was broken at her school in February last year. After a lengthy investigation, there was no fault found. Jon and I had lost our faith in her school for a period of time. It was very difficult making the decision to send her back. After a promise of increased safety measures, new staff and a lot of time, we did send her back.
All had been going so well. We were so happy with her new classroom. Her teacher was sending us glowing reports of how happy she was in school. Her therapists shared with us how much progress she was making. We were so happy for her and were feeling really good and safe once again.
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....
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....
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.
She started out pretty tired during the table work (she woke up at 6:00 this morning) but she pulled through and kept her eyes open (for the most part) for the rest of the session. Today she worked on standing in the spider with one leg immobilizer on. The goal is to try to get her to "push through" on the other free leg. She is yet to bear weight on her legs but we have high hopes!
The rest of the session was sit ups and back extensions and some sitting work. I was mentioning today how far she has come from when she started there. All the times I said "She will never be able to do that" and now she has. Never doubt the potential of your children. They are amazing!
Thank you to all of those that donated and raised money to help make this session possible. You are all a part of her success. Check back for updates throughout the next few weeks. I will be posting pictures and videos on her website:www.livyshope.com and on her Facebook page:http://www.facebook.com/#!/pages/Livys-Hope/199549110060296
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....
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....
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....
Yesterday, I took Livy to her endocrinologist for her first hormone injection (Lupron-Depot). It didn't seem to bother her very much, thankfully, as she will have to have it done every four weeks. We are going to see how it goes and are considering the Supprelin implant for long term therapy. By the second month, the signs of precocious puberty should stop progressing as the production of her hormones are stopped. Yes, things are never dull here, she is always keeping us on our toes and we are learning new things all the time as she grows up....
We've been in a very nice holding pattern lately. Livy's seizures are generally under control. Her "cocktail" of meds seem to be the right mix for now. They are currently Keppra, Trileptal, Depakote and Clonazepam. Jon and I are always in discussion about what to do next. The doctors like to put the decision making in our hands a lot of the time because when it comes to Livy, we know just as much if not more than they do. This is always difficult for us. When things are going well we are told "don't fix it if it's not broken" but we also know that these medications take from her and keep her from her reaching her best potential. This is a very slippery slope we climb. As her parent, this is one of the hardest decisions to make.
Livy's hand has become her favorite thing these days. For those of you who get to see her, you know that she can't get enough of it. None of us really know why she puts her hand in her mouth all of the time but it may be because she is losing and getting a lot of new teeth right now or because she needs the oral stimulation or just simple because she can do it. We have been putting a splint on her arm to keep her from doing it so much but it only seems to frustrate her and aggravate the issue. I found myself raising my voice a little to her today saying "No Livy! Don't bite your hand!" but she just smiles that glorious smile and I just shake my head. Gotta love this little girl....
Happy Mother’s Day to all of you incredibly, amazing moms! You have shown us love and compassion. You have been there with us in times of true joy and in times of utter desperation. You are our lighthouses in stormy seas that guide us through the murkiest of days always lending a shoulder to cry on or an ear to listen. You believe in us when no one else does and give us encouragement to surmount our biggest fears. You are cherished for all that you do. Any of us lucky enough to have a mom that has sacrificed her time, her career or in some cases her own sanity so we might grow as individuals has been truly blessed.
A mother’s never ending love is her gift to her children. Janette Fisher describes this perfectly in her poem below. Also, to the left are some videos dedicated to mothers.
It is so easy to take life too seriously. I find myself doing it every day. To see life through a child’s eyes is perhaps the most powerful way to take a step back and enjoy what has been given to us. My daughter Hailey has so many wonderful gifts which she selflessly shares without even knowing it. Allison and I have commented on many occasions that Hailey has gotten us through some of the most dire of times over the last six years. Her sense of humor has brought tears of laughter where minutes before, there were tears of sorrow.
But as we age, most of us lose that sense of awe for what the world holds. We try to conform our children to society and in the process, we chip away some of their individuality and spontaneity. I find myself doing this and I am ashamed. So to Hailey, I promise to do a better job and to loosen up....
Over the years, we have heard this question many times and sometimes I have found it difficult to answer. How exactly do you explain to a child what has happened to Livy, why she looks "different", why she isn't "just like other kids". This is something families of special needs kids deal with all the time. In the past I have taken the approach of trying to explain that her brain grew differently. I know that these moments are teachable moments. The right words can make all the difference. I told her that Livy is just a little different from us. She is in a wheelchair because she is still learning to walk which prompted her to say, "I can teach her! Livy look, you just put one foot in front of the other". Her next question was, "Can she talk?". "Not yet," I told her, "but she has a great smile." And then Livy just lit up and gave her the best toothy smile. Perfect timing. We then talked about her wheelchair and how "cool" it was. How Livy can travel anywhere in it - even Disneyworld! And that got the little girl going, "I've been to Disney too!". And then just like that, they were just two kids, just alike.
No, there is nothing wrong with Livy and we know that but it's especially important to teach children the same. Make the next time you see a child in a wheelchair your "teachable moment" Smile, ask questions, find out what makes you the same. You might be surprised!
Yesterday, we said goodbye to an incredibly admirable woman, my grandmother. She lived an amazing life full of rich experiences and close relationships. She seemed to float through life impervious to all its pessimism and malice. I was asked if I wanted to speak at the service and with great appreciation, I accepted. Below is her tribute. Although quite personal, I feel it would be a tragedy not to share the details of someone whose life has inspired a family’s generations and woven her memory into the fabric of our existence.
Mema’s Tribute – 3/20/2011...
Yes, this is what it takes for a trip up and back to the Shands Medical Clinic in Gainesville. Livy had a follow-up appointment with her neurologist, Dr. Carney on Thursday. We haven't seen him in nine months...amazing! We normally were going up there about every three months it seemed so this was a much appreciated break. Livy's seizures have been pretty controlled on her current concoction of medications. The main issues we are dealing with are lower platelet counts, high ammonia levels and hypothyroidism. These are all unfortunetly side effects of the seizure meds she is on. So, we just add other meds to control the problems, patch patch so they say.
So, when we finally saw Dr. Carney, he was very happy to hear her good report. We discussed what the next steps would be for weaning her medications and we are planning on SLOWLY taking another one of them down. She went from six seizure meds and she is now down to four so that's a good thing. We told him about the two intensive therapy sessions she has done since seeing him last and he thought that was great. They have heard very good things about the TheraSuit method.
He told us that he has been working with people in Washington to have a conference down here at Shands regarding epilepsy. David Axelrod, who was Obama's political advisor, has a daughter with epilepsy and he is a big advocate for epilepsy research. Dr. Carney said epilepsy was not a "sexy" disease so there is not a lot of attention and money put into finding a cure. So, I wonder...how do we make it sexy?? :)
I am including a link below to CURE: Citizens United for Research in Epilepsy. So many people, including me before Livy was born, do not know a lot about epilepsy and it scares some people. But once you are educated and share what you know, it's really not that scary. Education is key.
In the past month and a half that we have had the Livy's Hope website up, we have been blown away at the amount of feedback and support we have received. When we created "Livy's Hope" we did so to share information about Olivia. We did so to share our lives with you. We did so to open eyes about disabilities. We know that this journey with Livy will continue to be challenging but somehow we have gathered strength from those of you who follow us.
We have heard from close friends, old friends, colleagues, distant relatives, "blasts from the past", Livy's old nurses and therapists and others we have luckily met because of her, and also from complete strangers. So many have given to Livy's Hope and I am inspired and speechless.
Thank you for being a part of our lives. You have no idea how much it means.
A hug can do so many things. It can comfort you in times of despair or enhance a moment of exceptional happiness. A hug can invite someone into your life or say goodbye for now. A hug can be romantic or platonic. A hug is security in times of uncertainty. So many uses for hugs but so underused. Don’t be stingy with your hugs. Don’t save them for later since later may never come. Hugs are free and they will never run out so don’t be afraid to spread them around.
Hug your kids as much as possible. Some day, they will leave the nest and it’s hard to give hugs on a phone call or in a text message. Hug your spouse, partner, boyfriend or girlfriend whenever you have the chance. He/she needs to know you want to feel the warmth only a hug can create. Hug your brothers and sisters. They are the closest people to you on this earth and that should never be taken for granted or forgotten. Hug a friend because friends need to know you care and will be there for them. Hug your parents because there will come a day when you will no longer be able to....