The Waiting List: From the Heart of a Parent

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Taylor Benanzer was diagnosed with MEF2C mutation, which is unique to approximately fifty known individuals across the world. Her mother, Megan, has graciously shared her story with the Little Light House.


“Taylor was born at thirty-nine weeks via cesarean section and was a healthy baby who ate and slept great. Taylor was breach throughout the entire pregnancy and her hip sockets didn’t fully form so she had to wear a pelvic harness for five weeks.

At six months, Taylor wasn’t rolling over so we started therapy. All kids develop at different rates and she had been in her in harness for five weeks, which didn’t allow much tummy time, so we weren’t too concerned about her delays. Taylor eventually rolled over and then progressed to sitting up by herself. Taylor continued in therapy and was very delayed in hitting milestones. She started to crawl a few months after her 1st birthday. We have the video of Taylor crawling for the 1st time. It was Facetime with my best friend and her kiddos. They were cheering her on and Taylor was chasing the phone. Knowing all the hard work Taylor had put into crawling made it that much more exciting.

Taylor was crawling, but it was still hard going to birthday parties and play dates, and seeing kids her age walking and talking. We left many parties with me in tears knowing how far behind Taylor seemed. I stopped following some of my friends on Facebook that had kids around Taylor’s age. It was too hard to see their kids doing things Taylor wasn’t even close to doing, and not knowing if Taylor would ever be able to accomplish those things.

When Taylor was 1 ½ and still not talking, walking or feeding herself, we knew that she had something more than just a developmental delay. This is when we decided to make the call to the Little Light House. Taylor’s little cousin is a current student so we had been to Mini-Laps to cheer her on, but that was the extent of our experience with LLH.

We scheduled our tour with Mrs. Lindsay. Seeing the classrooms, teachers, therapists and all the wonderful staff love on the kids as if they were their own was amazing. I knew this was the perfect place for Taylor. I couldn’t wait for Taylor to start but she was # 124 on the Waiting List; a wait that’s expected to be 2- 2 1/2 years long. Each month the LLH has a FLIP event held at the school. FLIP is a program for Waiting List families, designed to provide services and resources while parents and children are waiting. Each event focuses on a different objective and the staff shares with us what they do in the classroom and in therapy. Our first FLIP event to attend focused on literacy. They talked about reading and having your child pick the book. At this time, I thought Taylor would NEVER be able to tell me what book she wanted. They explained that communication doesn’t have to mean speaking, but that it can be eye movement and/or touch. I was still thinking Taylor wouldn’t be able to tell me what book she wanted. The therapist said to pick a book you know your child LOVES and one they don’t like as much. If they don’t pick a book, pick for them and pick the one they don’t like. After a few times of me picking Taylor’s least favorite book, she started to touch the book she wanted me to read. I called all my friends and family to tell them what Taylor was doing. That my daughter, who I thought couldn’t communication, was finally able to!! We just needed the tools to help us help her communicate. We started using this method for everyday life with Taylor. She was soon able to tell us if she was hungry or thirsty, what toy she wanted to play with, etc.

The LLH has a Christmas party every year for the students, and they invite all the families on the Waiting List. When we attended, Taylor was walking and kept making laps around the building. Each time we passed staff from the LLH, they made such a big event of seeing Taylor as if it was the first time.

Just days before Taylor’s third birthday, we received her diagnosis: MEF2C mutation. We received the results over the phone, so I immediately wanted to see what Dr. Google had to say. I couldn’t find a website, blog, walk, conferences, Instagram hashtags, nothing. We did find a MEF2C mutation/deletion private Facebook group. They have fewer than 30 kiddos (from the entire world) with this diagnosis, with the oldest being seventeen years old. We met with Taylor’s genetic team a few weeks later and they didn’t have much information. The genetic test has only been around since 2009. Here we had the diagnosis, the answer… but it couldn’t tell us anything. At the beginning, it was tough not knowing what therapies would help best, if the seizures would get worse, if Taylor would eventually regress; all the answers I thought we would get with having a diagnosis. Some days are hard, thinking about Taylor’s future and how we will handle having a forever child. However, most days are GREAT. Knowing how much our friends and family love Taylor and how much joy she brings everyone. We have seen Taylor grow so much in the last three years and can’t wait to see the story she writes.”

Kid Corner: Wyatt Wolery

“Wyatt’s Story: By Benjamin Wolery”

At a very early age, Kelly fell in love with the name Wyatt. So when we married in 2009, Kelly made it apparent that we would name our first son Wyatt. Wyatt, of English origin, meaning “Little Warrior”. Although we knew what we would name our son, we had no clue how he would live up to its meaning.

In 2010, Kelly and I decided to have children. We had problems becoming pregnant and decided to try in-vitro fertilization. The first attempt was a success. We were having triplets! Approximately six weeks into the pregnancy, we went to see a specialist. After an ultrasound we were told that one fetus had perished. Although distraught with the news, we continued to maintain a positive attitude. The pregnancy continued with normal doctor appointments. At week sixteen, we received more bad news. The second fetus had also perished. We were devastated. How could this be happening to us? At twenty two weeks, we were told by the Gynecologist that the surviving baby had “obvious” deformations of his head, swelling in the brain, hydrocephaly and two clubbed feet. The Gynecologist strongly recommended that we go to Arkansas for a late term abortion. We decided to get a second opinion.

Immediately, we made an appointment with a different specialist, who told us that the baby’s ventricles were enlarged and that it could cause some learning disabilities. There was no need for an abortion. We continued with weekly doctor visits and ultrasounds. During week twenty-seven of the pregnancy, Kelly could no longer feel the baby moving. Consequently, we went to the hospital and were put on a monitor. Less than 24 hours later, on the 26th of February, 2011, Wyatt was born. Wyatt weighed 1lb. 5oz. and was 12 inches long. Immediately, the medical staff took him. I remember telling them, “Please, make sure he lives.” He was immediately placed on a ventilator and wrapped in cellophane to maintain his body temperature.

The next day, the Pediatric Surgeon suggested that he perform exploratory surgery to determine a problem with Wyatt’s intestines.  We were terrified.  How could anyone operate on someone so small and fragile?  Wyatt survived the five hour surgery, and that was when we realized the strength of his spirit.  Wyatt’s stomach was not attached to his small intestine, and he had two blockages in his small intestine.  In addition, Wyatt had Apple Peel Syndrome: a condition in which there is only one blood vessel supplying blood to the digestive system. The Pediatric Surgeon was able to attach Wyatt’s stomach to the small intestine and clear the blockages, but this would only be the first of many obstacles we would face.

Baby Wyatt

Wyatt and Family

In April 2011, more devastating news.  While out of town attending a funeral, we received news that Wyatt had a seizure.  We rushed home and had tests conducted.  We learned that Wyatt was born with approximately one third of his brain missing and lesions throughout his brain.  Conditions described as Porencephaly and Schizencephaly.  We could not imagine how anyone could live with this condition and were left with thousands of questions that could not be answered.

By July 2011, we were exhausted from being in the hospital.  Though we had met many great people, we were tired of watching other families come and go, so we began to pressure hospital staff into giving us a leave date.  Finally, after another daunting surgery of inserting a Mic-Key button into Wyatt’s stomach, Wyatt was released from the hospital.

We first learned about the Little Light House during a therapy session with SoonerStart.  Immediately, we placed Wyatt on the waiting list.  We attended FLIP meetings, which exist for parents of children on the waiting list.  We were overwhelmed by support and hope.  All of these children were happy and donned enormous smiles.  Even though we did not know these families or children well, we felt like we belonged and were accepted.  We continued with FLIP for two years until we received the call that Wyatt would be attending The Little Light House.

Wyatt has been a student at the Little Light House for approximately one and a half years.  Although he has had many medical setbacks and multiple lifesaving surgeries, the parents and staff at the Little Light House have been there for us through it all.  Providing guidance, meals and spiritual support the parents and staff have given us everything Wyatt needs inside and outside of school.  Wyatt continues to grow stronger every day with the help of the staff at the Little Light House.

Despite Wyatt’s limitations, the Little Light House accepts him with an open heart.  Each day, Wyatt attends the Little Light House with staff cheering him on and working with his needs to further his development.  Their multi-disciplinary staff tediously works on Wyatt’s developmental deficiencies and to improve his quality of life.  Wyatt could not be happier.  As I push Wyatt in his wheelchair through the doors of the Little Light House, his eyes light up with joy.  Wyatt knows that his day will not be easy, but that those around him love him for who he is and only want the best for him.  Wyatt returns their love with the most infectious smile of any child.  Wyatt LOVES the Little Light House.

Homecoming! Mini-Laps 2015

One of the greatest days of the year at Little Light House is fast approaching- Mini-Laps! On September 26, 2015 each of our 64 kiddos will get to strut their stuff around our track while LLH founder, Marcia Mitchell, reads their many achievements, milestones, and miracles. Hundreds of family members, friends, and spectators will gather to cheer and encourage. This year’s theme is “Homecoming,” and each student will dress in a costume to take his or her lap. Some will even be decked out in floats. Each child will go around the track in the way best for them. Some use walkers or wheelchairs, some use wagons or tricycles, and some walk or run on their own two feet!

Immediately after each kiddo takes their lap, the annual carnival will begin! Avis Budget Group brings carnival games and prizes, face paint, and lots of snacks and goodies. There will also be a hotdog lunch, clowns, and music to set the mood. It’s a day you won’t want to miss, so mark your calendars now! Head over to www.classy.org/MiniLaps2015 to track our progress and support our wonderful students!

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Alumni Spotlight: Elliot Bennett

Elliot graduated from the Little Light House in 2013.

    

My precious son, Elliot was born February 2, 2007 via an emergency cesarean section.  While we were waiting for him to take his first breath, the doctor informed me that Elliot looked like he had Down Syndrome.  Elliot’s first three months were spent in the NICU at Arkansas Children’s Hospital.  We almost lost him several times.  I did not focus on the fact that he had Down Syndrome for a lot of that time because I was just praying he would survive.  He had so many health complications that I focused on those hurdles as they came.  I did not know a lot about Down Syndrome but I knew that I would learn all I could as I needed.  I got Elliot on the waiting list at the Little Light House when he was a month old and still in the NICU.  I did not know much about the school, but I knew I wanted to give my son every opportunity I could, and the Little Light House would be the best.      

 

Elliot, now eight years old, graduated from the Little Light House in 2013.

Elliot, now eight years old, graduated from the Little Light House in 2013.

 

Elliot was fortunate to be able to attend the Little Light House for five years.  We got that coveted call late July 2008 to let us know there was a last minute spot open! Elliot was 18 months old and not sitting up independently.  Two months attending school and he was starting to sit up.  He had some motivation… he did not want to miss out on what was going on around him.  Seven months later, he was walking with a walker.  It was so nice to have other people interested and excited about his progress.  Teachers, therapists, and office staff cheering him on every step of the way.  He loved the attention and that inspired him to make great strides year by year.  The Little Light House is a place filled with hope.  You feel it from the children, their parents, volunteers and the staff members.  So many parents of children with special needs are told when their children are born that they won’t reach certain milestones. 

 

The Little Light House is a beacon of hope that renews not only the children’s spirits, but the parents as well.  The staff love the students like their own and sees the potential in our children that the rest of the world does not see.  I see now more than ever that the LLH is a training ground for not only our children but the parents as well.  Training us to fight for the best for our kids, to cheer our kids on as they hit milestones the rest of the world thought they would never accomplish, to be advocates for our children and others like them, and to teach others that every life matters.  The Little Light House prepares us to be beacons of light to be sent out into the rest of the world.  The LLH prepares our students for school in the real world and prepares us how to face the real world and show them all that our children will accomplish! 

 

What I Wish You Knew: Cerebral Palsy from a Child’s Perspective

People with Cerebral Palsy are wonderfully and fearfully made by God, and each of us are unique. Let me tell you some of the things I wish you knew (but probably don’t) about CP.

1. I’M NOT WHAT YOU SEE// I have Cerebral Palsy, and it makes things a little more difficult for me. You see, my brain has a hard time making my muscles do their jobs, but that just means I have to do things a little differently than many of my friends. I am a kid with an imagination and dreams– I am not my disability.

2. I LIKE TO PLAY// And do everything that kids my age love to do! We may share the same favorite movie (psst…Frozen!), and I, too, am trying really hard to give broccoli a chance.

3. CAN’T CATCH ME// My disability is not contagious, it’s a brain disorder that I will have until I’m old and gray. I think it’s pretty silly that some people are afraid of me. I have CP, not cooties!

4. LET’S TALK// I might not be able to keep my head up or eyes on you while you’re talking, but I promise I’m still listening. Please be patient– I love to talk to everyone around me, and I have plenty to say!

5. I CAN BE ANYTHING// My diagnosis will not stop me from being successful. I don’t want your sympathy, I just want you to give me a chance. My disability will make me work very hard for my dreams to come true, but I will be such a strong person when they do.

6. OUCH// The muscles in my body hurt sometimes. People often think I am having a tantrum, but I am really trying to tell you that I’m in pain. A way you can help is by moving my body for me. I might only need my hips or legs moved to make it all better!

7. I AM BEAUTIFUL// Though you might think it was an accident, I was created with CP for a purpose. I am perfect and beautiful in God’s eyes, and so are you. Let’s make a pact: I will do my best to see you through His eyes if you do the same for me.

Kid Corner: Landon Warren

“Landon’s Story: By Jeremy & Heidi Warren”

On what started as a normal day in early October, we discovered what would become a journey that would bring every emotion you could experience to the surface. Our pregnancy was completely normal with ultrasounds at almost every visit and then us going in for a scheduled induction at 39 weeks gestation. When our second son Landon came out, that is when our OB/GYN noticed a true knot in his umbilical cord; he was blue and not breathing. After being carted away immediately he became stabilized a few hours later. We thought the craziness was behind us; little did we know. During that first night we received a call that his lungs had collapsed and he was unable to breathe on his own. We knew this was going to be a long journey and we would have to put everything in the hands of God. Landon spent the next weeks of his life in the NICU and PICU working on bottle feeding and learning to breathe on his own. It was later decided that he needed a feeding tube, fundo and a tracheostomy to help him with his feeding and breathing. We also had a long list of blood and genetic testing done for Landon after not knowing the cause for his weakness and struggling. During this time, we had many friends who volunteered at the Little Light House, some even working there. They encouraged us to get Landon on the waiting list early. So, without hesitating, we did exactly that.

Landon was discharged from the hospital on December 23, 2009 and we started a new way of life for all of us. Learning to care for home ventilation through a tracheostomy and feeding through a feeding tube was a challenge but it was what Landon needed. It allowed him to put his energy into learning to hold up his head, strengthening his core and using his arms and legs. At 6 months old we spent 2 weeks at the Mayo Clinic working with specialists to help Landon find a diagnosis and to discover treatment plans. We have yet to have someone give us a diagnosis but we just like to call it the “Landon Warren Syndrome” and love him just the way he is. At 8 months old we started physical, occupational & speech therapy to help Landon learn life skills. This is when going to the gym was hard work and not fun for Landon but he was able to gain some strength and gained some mobility. The summer before Landon’s 3rd birthday we got the phone call that Landon was next on the wait list at the Little Light House! We were completing the process of getting his trach closed off and starting school the next month. What a huge blessing the school was for Landon by allowing him to be surrounded by other kids struggling through disabilities and turning them in to abilities. The school has helped Landon learn to independently walk in his walker and work through his sensory issues. Landon has learned to interact with his peers and is working on communication with an electronic device.

November 2014: Landon at school, wearing the "coat of many colors" from the story of Joseph.

November 2014: Landon at school– wearing the “coat of many colors” from the story of Joseph

The Little Light House has not only changed Landon’s life but the lives of our entire family. The school has helped him develop new life skills and has encouraged him to want to try new things. It’s been a great support and resource tool for our whole family. We know as we prepare to graduate we will not be leaving the LLH, but only changing our school, and we will always be involved with the Little Light House and other alumni families. We are so thankful for everyone at the Little Light House and feel it a great privilege that we were able to attend school there for 3 years. We can say with confidence that this place is filled with the love of God and staff that loves children, such as Landon, just as unconditionally as their Creator.

Groundbreaking Excitement

It’s a new year, and here at the Little Light House we are more excited than ever to be so close to breaking ground on our facility expansion. With over 160 children on our waiting list, the need for a larger facility is greater than ever as children are waiting three years to be enrolled into our program. With services for children from birth to six, we are losing half of the time of eligibility to help each child reach their maximum potential. Châteaux gonflables

Thanks to a challenge grant from the J.E. and L.E. Mabee Foundation, we are closer to our goal of breaking ground than ever before. If we raise the remaining funds for Phase 2 of our project by October 2014, the Mabee Foundation will award the Little Light House with a $1,000,000 grant. This would allow us to break ground and expand our facility to include more classrooms and serve more children than ever before.

A Very Special Christmas

Christmas season at the Little Light House is always one for the books. We love to celebrate the birth of Jesus with our students, and teach them the story of the greatest gift of all. This Christmas season friends from around Tulsa have worked hard to make this Christmas one that we will never forget. We’d like to share a few of our Christmas highlights with you today and thank some very special people.

Emsa

The team at EMSA Oklahoma delivered special stuffed animals for each classroom at the Little Light House. These toys were distributed to students throughout the school and helped make for an extra special Christmas! Thanks EMSA!

 

The Christmas fun continued as we received word that our friends at the Tulsa Vette Set spent hours of their Thanksgiving holiday and their entire black Friday shopping for Christmas gifts for each of our students. Here’s a sneak peak of the day they dropped those wonderful presents off.

VetteSet

The Little Light House partnered with so many wonderful organizations around town to throw our families a magical Christmas party, complete with Santa himself!

We couldn’t have pulled this night off without the support of the following people; we can’t say thank you enough:

  • Tulsa Vette Set
  • Jim & Deborah Rainey
  • Chick-Fil-A
  • Stan Krause
  • Green Country Puppeteers
  • Nancy Niewald
  • Janet Burnside
  • Laura Lambert
  • Parkview Baptist Youth
  • Petsmart
  • Ann’s Bakery
  • Cozmo’s
  • Pancho Anaya Mexican Bakery
  • La Margarita
  • Ludgers

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Mini-Laps is Here!

Mini-Laps 2014

Music through the Decades

With less than four weeks until Mini-Laps 2014, our biggest and most fun annual fundraiser, things are starting to get exciting around the Little Light House! This year’s theme is Music through the Decades and our parents are already working hard to come up with the best costumes and floats. Be sure to mark your calendar for September 20th so you can experience God’s glory as each of our 64 students take a turn around the track while the emcee reads a short biography. All the kiddos will be in costume and everything will be decorated. The whole day feels like a party! Don’t forget about the carnival immediately following Mini-Laps! Avis generously provides yummy food and free games for the families and guests to celebrate with! This year 23 of our students will take their very first lap around the track- an event that is sure to be memorable for all. This year we will have some special guests like Mavis Pearl and Harper’s Hut- It is sure to be a day for the books! This is the one event of the year where our families fundraise, so if you would like to sponsor a child please visit our website, www.littlelighthouse.org, or call the Little Light House at 918.664.6746. We hope to see you there!

 

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Volunteer Spotlight- Nicole Flippo

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Nicole Flippo is a dedicated classroom volunteer that loves and inspires the blue class each week. We sat down with her to find out what drew her to the Little Light House and what she loves about volunteering. Learn more of her story below:

  1. How long have you been volunteering at LLH?
    1. About a year and a half.  I started in January of 2013 and have been volunteering off and on since then.
  2. Why did you start volunteering at LLH?
    1. Every January, Cascia Hall, my high school, allows juniors and seniors to go off campus for volunteer work.  I signed up to go to LLH and immediately fell in love.
  3. Favorite part?
    1. Praise & Worship, probably.  I love watching all the kids get up and dance!
  4. Biggest challenge?
    1. I was really self-conscious at the beginning.  It took awhile for me to get outside my box and allow myself to be silly.
  5. Has volunteering here changed your outlook on anything?  If so, what/how?
    1. Before coming to LLH, I never really thought volunteering was for me.  Once I got here, though, I realized that volunteering is easy when you’re working with an organization you believe in.  Now I can’t help but think the best way to make an impact is to just focus on your passions.
  6. Would you recommend LLH to others in the community?  If so, who and why?
    1. I would recommend LLH to anyone looking for a way to give back, but I think teenagers who maybe aren’t quite ready to give up playtime (like me) would really connect with the students. 

Thanks for everything you do, Nicole! You are a gem and the Little Light House is blessed to have you!