It’s funny how time flies. But in the moment when you’re in the NICU with your brand new preemie, it can seem to tick by so slowly. When you’re neck-deep in a situation, it can feel hopeless.
Today as we celebrate the 10th birthday of our very own miracle, Kaleb Moore we encourage all those who feel like they’re in hopeless situations to take heart. It may take courage to push forward, to look up, to have hope when there seems to be no reason to do so, but that courage will have a positive impact on your outcome, no matter what.
Ten years ago today, a preemie was born. It was a dire situation – to say it was an emergency would be an understatement. For the baby boy was just too small. He was too underdeveloped to survive. He weighed only a pound and an ounce. He was very fragile indeed.
Many medical professionals wanted to give up on him. It’s not that they didn’t care. They did. But their expertise and experience told them that this baby wasn’t meant to survive. They were so wrong.
Kaleb is remarkable, not just because of how his life began, but because of his zest for life. Being born prematurely hasn’t left him totally unaffected, but he’s an amazing person to know. And he has achieved so much because he just keeps on doing and learning and growing.
Kaleb is curious, rambunctious in the best way, and full of energy. And when you talk to him you so easily forget his story. You forget his humble beginnings. No, it doesn’t come to mind. But the moment it does, you’re shocked.
What an amazing guy Mr. Miracle Kaleb Moore is! His life is a testimony and every year on this day we not only celebrate, but releflect. Every year on this day to us is a call to look at our troubles and see that even the seemingly most hopeless situation can turn out to be the beginning of an amazing success story.
All life is a miracle. The lives of some miracles become major sources of inspiration that results in the creation of new things and has a positive impact on the world. Kaleb Moore’s life is one such source.
It was 10 years ago today that Kaleb was born. At birth, he weighed only 1lb. 10 oz. His outlook was bleak – at least according to the doctors who were there. According to their calculations, Kaleb only at a 5 percent chance of survival. His parents, Marcus and Rosie Moore, now founders of The Gift of Life were distraught but hopeful and rested deeply in their faith.
Kaleb had a trying and emotionally tumultuous six month stay in the NICU. The experience touched the hearts, minds, and spirits of his parents in more ways than just the concern for their son. As it turns out, they weren’t the only parents there.
Rosie and Marcus Moore witnessed the experiences of many preemies and their parents in the NICU. Regardless of the individual situation of each preemie, every parent there had something in common beyond the fact that their babies were there. All shared a gaping need for support that wasn’t being filled.
Generally speaking, NICU professionals do their best to provide the parents with emotional support. Many of the NICU staff, however, have never had a preemie of their own. Try as they might and love as they do, they cannot relate as deeply as the parents need. Plus, the staff’s focus has to remain on providing medical care to preemies, not comforting the parents.
And, as Rosie and Marcus soon learned, the unmet needs of the families of preemies are far more than that of a few consoling words and pats on the back. Many of the preemies blessed to graduate from NICU do so with special needs. Often, the special care a premature baby requires will be on-going for as long as they live.
Having a preemie can change a family’s life forever in more ways than if the child was born full term. For starters, the first year cost of having a preemie son or daughter averages $40,000 more than for full-term offspring. Many parents of preemies, moreover, must go through special training just to be able to care for their child. The many doctors visits and demanding routines can wreak havoc on the parent’s ability to produce an income.
Studies show that a shocking 1 in 5 parents of preemies have contemplated suicide. The experience of having a preemie has given many PTSD. And even for those who don’t develop PTSD or become suicidal, the emotional, financial, and physical demands of having a preemie still cause a myriad of mental health issues.
But we love them.
A preemie baby is a baby. Most premature births happen unexpectedly. The majority of expecting parents look forward to the birth of their child and hope, even assume, that he or she will be born healthy and sound. Moms and dads fall in love with their babies before they are born.
And the lives of the preemies who survive the NICU are well worth any sacrifice required to support them and help them develop into their best selves. Preemie are people. As is with all human beings, many enter the world and grow up to do some amazing things. Some of the most well-recognized, notable figures in our society were preemies at birth, including Albert Einstein, Charles Darwin, Mark Twain, Sir Issac Newton, Stevie Wonder, Anna Pavlova, Pablo Picasso, and Wilma Rudolph.
And here at The Gift of Life, our notable celebrity preemie is “Miracle” Kaleb Moore. We absolutely love him. We love him not just because he survived. We love him for being the person we know him to be. Kaleb is a confident, outgoing and friendly guy who quickly captivates the hearts of most – despite and often due to his signature rambunctiousness, unmatched energy, and relentless curiosity.
“Miracle” Kaleb Moore is absolutely spectacular and that’s a fact.
It has been a wonder to watch him grow and we’re so thankful that he is still growing and developing. His life bears witness that medical outcome projections aren’t the final say. To be near Kaleb you can feel his love for life – if you’re willing. One look into his ever-bright eyes that seem to see right through to your soul and you’ll know that Kaleb is on this earth because he wants to be. And that is why I love him.
As the executive director, I know well that The Gift of Life would not have come about without Kaleb. There are several nonprofits and charities that focus on championing the cause of preemies and addressing the root of premature birth, such as The March of Dimes, Miracle Babies, Graham’s Foundation, and Project Sweet Peas, The Gift of Life Corporation is aiming to go deeper and further in providing long-term support for the parents of preemies – because that’s what’s needed.
As a charity founded by preemie parents for preemie parents, we provide a growing list of support services that include but are not limited to care packages, case management, parent mentoring, grief support, financial support (as available), and NICU baby cuddlers. We serve families throughout the United States and have a small-but-growing support presence for the families in Africa. As of 2018, we’ve helped more than 4,000 preemie families since starting in 2014.
If you are a preemie parent or know one, please contact us for support. If you are a member of a similar organization, connect with us for collaborative projects. Business owners who are interested in becoming a corporate sponsor can learn more about our corporate sponsor program at CorporateSponsor.org. We are also accepting volunteers and welcome individual donors.
Thank you for helping us celebrate Miracle Kaleb Moore’s 10th birthday! If you’d like to witness his zesty personality for yourself, consider attending one of our events or joining The Gift of Life team.
What exactly is EMDR and what does it do? Before I begin, let me share a little about my story as a child born prematurely in 1955. It is a surreal thought, really, that I was expected to die on the day I was born, but I survived. My parents never talked about it much, except for the statement, “Andy was almost born on the Rochester Bridge” as my dad raced to the hospital. Everyone would laugh. That was about all I knew or cared to know, for that matter.
What does a premature birth have to do with EMDR, and what exactly is EMDR? Without getting too much in the weeds, let’s just say it is a rather miraculous discovery that processes distressing emotions and body sensations that seem to get triggered throughout the life span. EMDR stands for Eye Movement Desensitization and Reprocessing, hence the need for the acronym EMDR.
What happens with the human brain when distressing experiences occur is the distressing body sensations and emotions are usually managed at night, when we go into the REM sleep cycle. During REM, our eyes move back and forth, processing the material from the day that we do not need. For example, if you get a speeding ticket, you may experience body sensations and emotions throughout the traffic stop, but after a good night’s sleep, you can talk about the traffic stop without feeling the emotions or body sensations. You are left with the gist of the event. You do not re-experience the emotions and body sensations.
The event becomes just this thing that happened that you will take care of and go along with your life, but you will drive more carefully. When our brain works properly, this is the mechanism that allows us to have an experience and learn from it. It is a very good system for keeping us safe and helping us to learn and grow. It is the mechanism that causes us to change our behavior.
When a trauma is experienced, like a doctor telling you your baby has a 10 percent chance of survival tonight, well, that moment is burned into the parent’s psyche. It will be replayed over and over with body sensations and emotions coming alive every time that image is pondered. This is very different from the traffic stop. REM sleep is not powerful enough to process traumatic events. They get stuck. Emotions and body sensations are activated every time the thought of the event occurs and talking about the event is worse.
Sadly, even if this innocent premature child survives, that “your child might die tonight” image will remain and be troubling for the parent forever. These traumatic moments take on a life of their own and begin to create what we call in the mental health community “negative cognitions.” This simple phrase may sound rather harmless, but these words describe a way of thinking and behaving about everything in a person’s life. For example, if the child does not survive, the mother and perhaps the father may think, “I did something wrong” or “I’m to blame” or “I can’t trust” God or the universe or the doctors. These words are not limited to the event related to the newborn, but these negative cognitions infiltrate every aspect of the person’s life.
Now the mother hates going to the doctors for her own medical care because she doesn’t trust doctors. She starts to punish herself because she feels it is her fault. She may eat or drink in excess or not eat at all and develop an eating disorder. The husband may blame the wife, thus impairing the marriage. It is not unusual for parents who have lost a child to divorce. I could go on, but you get the idea. The loss of a newborn can also affect the next healthy child born who hears the story. The parents can become overprotective. The healthy child is fearful of getting sick because of how anxious the parents get. The healthy kid may have split in two, trying to be the deceased child and trying to be themselves and in the end just feeling lost.
These things do not always happen to everyone. These are things that may happen, and parents who have had such experiences should be vigilant. They should also know EMDR fixes all of these issues. Yes, all of them.
One of the beautiful things about EMDR is that it removes the distressing thoughts, feelings, images, memories, and body sensation. It also causes an adaptive shift in the person’s negative belief. For example, “I’m to blame” after EMDR treatment shifts to “I didn’t do anything wrong.” During the process of EMDR, there is little to no talking. The therapist sets up the process, begins stimulating the clients with the eye movement, and manages the session. (The therapist moves a hand back and forth, and the client tracks the hand to mimic REM sleep.)
As I said, REM sleep does not seem to be powerful enough to process traumas. The REM system breaks down. EMDR picks up where REM leaves off, and EMDR seems to be far more powerful than REM. EMDR is like REM on steroids. EMDR processes troubling material, and after the session, the event is no longer activated to the degree it was activated in the past and the parent can start to move beyond the event.
The adaptive shift of the negative cognition to the positive cognition is perhaps the most remarkable component of EMDR. This shift happens in the client’s own mind. It is permanent, and when it happens, the client believes it in every cell in their body because the thought is true; the negative cognition is the lie.
Unfortunately, you cannot think or talk yourself out of the troubling emotions, nor can you just tell yourself, “I didn’t do anything wrong.” It doesn’t work. Your head might know it’s true, but your heart doesn’t buy it. EMDR gets your heart in line with your head.
Oh, back to me and my premature birth. This may be bad news not just for parents of children born prematurely but for all of us. Every one of us is living our life through a negative belief system. Our brains are designed to collect this negative belief in childhood, and there is nothing we can do to stop it. It is happening outside of our awareness. You may be already telling yourself, “Not me. What do these stupid psychologists know anyway?”
Sue Johnson, the developer of the very effective couples therapy known as Emotion Focused Therapy, tells us that all couples who come for counseling have one person who feels like they don’t matter and another person who feels like they aren’t good enough. This happens at a rate of 85% of the time. The other 15% of the time, there are two I don’t matter people living together or two I’m not good enough people. My wife and I are both not good enough people, that is, until we did EMDR to shift the belief to “I am good enough.”
So, using Johnson’s premise that everyone is either an I don’t matter or I’m not good enough person, let’s look at the premature event and which of one of these two cognitions are present in this situation.
On the day I was born, my negative belief was born too. Before I could walk or talk. Before either of my parents held me, I was “not good enough.” My negative cognition and I were born on that same day. All of us get a negative cognition early in life. Our brain development is designed for this to happen. One of our life tasks is to work our way out of this negative perspective. Some people never do. Some people are not even aware that their life can be so much more than it is.
I always say that people who come in my office, people in great distress and turmoil, have received an invitation, a most beautiful invitation to change and find their authentic self. EMDR is the only way I have ever found that can facilitate such a dramatic transformation. EMDR has this power because it changes the brain’s circuitry in a permanent and adaptive way.
On the day I was born, a lot of negative beliefs were flying around me in that incubator. I was weak. I was different, not like all the other healthy kids crying in unison in the other room. I was alone. I was a disappointment. All the other parents were passing out cigars; mine were calling the priest for blessing before my death. But the lingering negative cognition that has been the driving force in my life that encompasses all those other negative beliefs is “I’m not good enough.”
I had great parents. I would never want to change my parents for anything in the world. I love them both dearly, but they did this thing where they would compare me to other kids. You know, “Why can’t you study like Johnnie?” “Why don’t you practice harder like Billy?” That’s it. That is all it takes to ignite a negative cognition to begin taking over one’s life. I identified with their statements. It was clear my parents thought these other kids were better than me. I was not good enough. This statement was not a stretch to accept; after all, on the day I was born, I was not good enough.
The good news is EMDR changed everything for me. If I was still being driven by the “I’m not good enough” cognition, I would not be someone who trains therapists from around the country. I would never think I could write a book that mattered to people. I would never think I had anything of value to share with you or anyone else. In the end, I am good enough, and the cognition that began on the day I was born is no more.
I know as parents you are thinking, “I’ll never say that to my kid. I’ll never compare them to anyone.” Listen, everyone gets a negative belief. Our brain development is designed so kids pick up a belief that they must figure out. A teacher can make your child feel not good enough. If they don’t make the basketball team, they are not good enough. If their girlfriend breaks up with them, they are not good enough. Just love your child and know they, just like you, will have to identify and correct the negative belief.
That premature birth was the type of traumatic event that is also one of those wonderful invitations to change and grow.
When parents are in the NICU, it is a roller coaster ride day in and day out. There will be good days that the baby is doing well and then there are the days when the baby’s life is in danger because the baby’s condition has taken a step backward. Many times it is infections that will cause the baby’s breathing needs to increase so they have to remain on life support longer, other times it is surgery, making the baby’s progress unknown. It is a day to day management of the baby’s needs. This type of stress takes its toll on a parent where they lose hope on those days and they do not have anywhere to turn. Family and friends are there for the parents, but after a while, the support becomes less and less and the parents only have each other to hold on to. When both parents have lost hope and do not have a place to turn, it becomes daunting and unbearable.
As a parent of a preemie myself, I had those days and each and every time when my husband and I went out to our car we would walk saddened to the car in the long walk through the parking garage wondering what will become of our baby and how will we cope. However on those days without fail, every time we got in our car to drive home, we would listen to Z88.3 a contemporary Christian radio station that offers support to listeners through positive radio music and the song that each and every time came on was “The Voice of Truth.” The song speaks about having faith to stand before a giant and the strength to carry on. The song gives encouragement that any trial we face God has the last say. We took that song to heart and each time we received bad news remembered it at the very moment the bad news came and we would listen to it on the radio when it came on. We had nothing else but our faith to hold on to.
Regardless of what your religious beliefs are, this song will encourage you through the difficult times.
It was such a powerful song, that it was performed at our charity gala twice by two different performers to give hope and encouragement to the preemie parents attending that year.
Every year Rosie and Marcus Moore founders of The Gift of Life, take November 17 World Prematurity Day as a day to remember their little miracle Kaleb that was born 13 weeks early at 27 weeks, weighing only 1lb 10oz and 12 inches long. They remember the almost 6 months that he lived in the Neonatal Intensive Care Unit (NICU) growing, having medical issues, and hanging on to every breath, wondering if it would be his last one. They cried, they prayed, and lost sleep for months and even years after he went home. At birth, he was only given a 5% chance of survival, while Rosie, hung on for life as well after the emergency c-section. Marcus was at a loss with his only child possibly not making it, the love of his life in serious condition following the surgery. He clung to God, but also to the song He’s My Son by Mark Schultz. He prayed those words, he shouted, God can you hear me. Somedays there was silence and the emotions overcame him because he could not stand another day going to see his son suffering.
As Rosie got better, his spirits were lifted through her encouragement, that God would not provide him a son to take him away. He grew stronger each day until the day he finally came home. This past September, The Gift of Life held their 5th annual charity gala and Rosie decided that she would put together an assimilation of what life in the NICU was like for parents. Marcus and Tisha were to perform in the assimilation together, but due to the unexpected hurricane Tisha, Mrs. Virginia International, mother of preemies herself, was not able to get out to Orlando. But because Orlando has a huge heart for charity, Karen Shriner, professional actress, and singer stepped into the role 2 days before the event and evoked emotion along with Marcus from the audience.
See some of the remarks from the guests:
“I was overtaken with emotion, I could not stop crying.”
” I already knew the story because I went through it with Marcus and Rosie, but seeing the show tonight, brought me back to that moment and I cried like a baby.”
“I never knew that parents endured these emotions.”
“I was scheduled to work and did not know that my job today was involving an event for premature babies, it brought me back to when my daughter was born 14 yrs ago, I could not stop crying and I am supposed to be working the event.”
The list went on of people sharing their emotions.
The assimilation started with founder Rosie Moore saying:
“Imagine your baby being born 13 weeks early, weighing 1lb 10oz and fitting in the palm of your hand.”
From there, The NICU awareness video played:
Then the assimilation with Karen Shriner and Marcus Moore started to the song He’s My Son” by Mark Schultz. It showed the daily fears, tears, struggles, emotions of two parents while their baby was in the NICU. That is the story of Rosie and Marcus. Florida Hospital partnered with The Gift of Life to sponsor the Isolette similar to the one little Kaleb was in when he stayed in the NICU.
Many times Rosie would be alone in the room not wanting to go home while Marcus would go to the chapel or on the other side of the room praying as Rosie hunched over the isolette still healing from her surgery, weary from lack of sleep, and hurting to see her son lying in an isolette connected to wires, IV’s, breathing machines, coding frequently setting off alarms. In this assimilation that is what Karen and Marcus are doing assimilating those moments in the NICU.
They share this story with you today not so that you can feel sorry for them or any other preemie parent but so that they can raise awareness of what is happening with preemie parents when they are in the NICU. These emotions are real and painful.
The Gift of Life needs your help, they can’t do this alone, it takes a village of volunteers, board members, and financial support to reach as many families as they can.