Sudden infant death syndrome stories

Losing A Child To SIDS: My Brother’s Story

On December 31, 2006 I became an Auntie; I was ELATED. Three short months later, in a fashion I would never have imagined in a million years, my family and I would be encircling a bassinet in a cemetery. I had no idea Sudden Infant Death Syndrome (SIDS) was a first-world reality, until it unexpectedly took my sweet nephew one cold day in April.

If you aren’t pregnant and don’t have any kids, you’ve probably never thought about SIDS; I hadn’t. When I heard words like “infant mortality,” I automatically associated such a travesty with remote, rural villages in the furthest outreaches of Africa or Mongolia or Papua New Guinea. Babies don’t die for no reason in America.

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This Thursday (April 10), it will have been seven years since Christian passed away. Each year on his birthday, and again on the day of his death, my family struggles to cope with how best to remember his sweet, but far too short life. As I’ve thought about Christian the last few weeks, I realized I desperately wanted to tell his story. I want people to know that SIDS is real, the effects it has on families are devastating, that these babies and their families are more than numbers and statistics. But how could I do justice to this story? It’s not mine to tell. As soul-crushing as the news of Christian’s death was to me, it has affected no one more profoundly than it did my brother.

Even though we haven’t lived together in over a decade, I still consider my brother my best friend. He is the strongest person I have ever met. He has faced and overcame more in his short life than many people have in twice as many years. Not only has he managed to survive such a tragic loss, he has done it with grace, and with his faith in God intact. Here’s his story, in his own words:

By Aaron Robinson

SIDS or (Sudden Infant Death Syndrome) is more common than people realize. It is every parent’s worst nightmare. Picture that one minute you are watching your baby laugh, play, talk gibberish, and the next they are gone from this world forever—all in the blink of an eye. According to data from the Centers for Disease Control and Prevention, 2,063 babies died in 2010 from SIDS. Even though “Back to Sleep” efforts helped to cut the SIDS rate by more than half since 1994, in 2013 SIDS was the leading cause of death among U.S. infants aged 1 month to 1 year, with 2,300 cases occurring annually according to the Washington Post.

What is SIDS? How does one get it? Is it contagious? What preventative measures can I do to have peace of mind for my family? What symptoms do these babies with SIDS have before they pass on?

These are the most common questions people ask when it comes to this topic. Fortunately, there are a few questions that can be explained, but I warn you that this isn’t going to be your typical fairy tale ending.

I myself know firsthand how devastating and real SIDS is.

On April 10th, 2007 my 3 and a half month old son Christian died out of the blue right under my nose. He was a perfectly healthy baby that had a smile that could brighten the darkest room. He was just starting to talk (gibberish of course), he was beginning to crawl and even lift his head up high. His results from his two month checkup after his shots came back great. The doctors said he was a perfectly healthy baby. Knowing his health a month and a half prior to his death made this situation even more frustrating. How could the doctors not know that he had some kind of illness during all of the testing?

Well, Sudden Infant Death Syndrome (SIDS) is also known as “Cot Death” or “Crib Death,” and is the sudden death of an infant that is not predicted by medical history, and remains unexplained after a thorough forensic autopsy and detailed death scene investigation. There was absolutely no way the doctors could have known that Christian had this condition. He was a healthy baby with NO symptoms of any illness whatsoever.

I remember the day he died like a horror movie that has embedded itself into my mind. Christian woke up early around 7:30am. My wife at the time had already left for work, so I had to care for him before I had to go back to another night shift. I fed him and held him on our couch in the living room. I would talk and laugh with him until he got sleepy. I set him down in his rocker for a bit around 10:30am/11ish. He was pretty fussy and couldn’t seem to fall asleep completely, so I took him upstairs for a bath to calm him down. After his bath I fed him again and sat with him on the couch. After a few hours of holding him, he fell asleep in my arms. I slowly took him up to his room and laid him down in his crib (on his back). I cleaned up the kitchen and got ready for my shift, which took me less than an hour to do. I noticed I hadn’t heard any noises coming from Christian’s room; usually I could hear him rolling around or even making some kind of noise. I went upstairs to check on him, and when I walked in I noticed that he was face down in the middle of his crib. At first glance I didn’t think too much of it, since he rolled himself over all the time.

But when I touched him, he was stiff as a board, and a chill like I have never felt before jolted through my entire body. When I turned him over his face was purple and blue.

I will never get that horrifying image out of my head. I have never even seen a dead body before, and the first one I saw was my own son. I screamed and panicked like never before. I immediately called my wife, frantic. All I could say was his name over and over.

She immediately was distressed saying, “What’s wrong with Christian!?” I couldn’t get any of the words out since they were all replaced by my cries and screams. I finally got the words out and said “He’s gone…..Christians Dead!”

I called 911 immediately after I called my wife. I began pacing back and forth in the room saying his name over and over. I tried to be clear with the operator, but words can’t even describe the emotions I was feeling at that moment. The ambulance arrived on scene within two minutes of my call. We were originally told that the paramedics revived our son, but we later found out that he was DOA. My wife and I were then both questioned separately by two Office of Special Investigations (OSI) officers.

Long story short, they were playing the “good cop, bad cop” routine with me for a bit, which I could not deal with considering my son dropped dead for no apparent reason. After hours in the hospital, we had to go back to our house to gather some belongings. When we arrived, it looked like a crime scene from a television show. There was yellow tape around our entire house with people walking in and out of it with kits and clipboards in hand. I couldn’t believe that all of this was happening. I just thought to myself “I know bad things have happened to other people, but why me!? Why us?”

The hardest part that followed Christians passing, was not knowing the cause of death for six months. For six long months, I blamed myself. I played the events that happened that day in my head over and over again to the point where I’d drive myself to near insanity. I kept saying “If I would have just kept him in my arms, or left him in his rocker, or just didn’t let him out of my sight he’d still be alive….”

My wife and I had two completely different ways of coping with our loss, which made things that much harder to cope. I am a very affectionate, outgoing, and social person. I wanted to talk about the situation and release all of my pain and suffering. Whereas she shut down, and was in denial about what had happened. She bottled her emotions and kept them in. Even mentioning his name was forbidden in our house. All I wanted was to be able to vent to my wife about everything, but I had to resort to talking with family, friends, and even complete strangers. Don’t get me wrong, it was nice having them there for me, but they couldn’t understand what I was truly going through. I had even gotten to the point of wanting to commit suicide.

My lowest point was sitting alone in our computer room with a butcher’s knife in hand. I kept asking God why he would bring a child into this world and take it away so soon. I felt like God hated and punished me for not being a good person. With the knife against my left wrist, I began to press. Tears were flooding down my face while I kept telling Christian how sorry I was that I had failed him.

Just before I planned driving the knife into my wrist and dragging it down my arm, I heard a voice yell out “NO!” I know it sounds crazy, but I am not making this up. I dropped the knife and knew this was not the way to go about the situation no matter how bad I was hurting. All this would do was cause even more pain and suffering for others who cared for me.

After what felt like an eternity of waiting for some kind of news, the funeral home called and told us they had received the death certificate. The woman on the phone kept apologizing and said “They have done every test known to man, and they could not find anything at all, so they determined that he died of SIDS.” I had no idea what she was talking about, but she went into more detail about it when we arrived at the funeral home. I felt like a ton of weight was removed off of my shoulders. I finally got closure, and part of me could finally snap out of the slump of blaming myself for his death. It was simply out of my control. It didn’t change the fact that he was gone, but at least I didn’t have to keep blaming myself for it anymore. We donated thousands of dollars to the CJ Foundation for SIDS research and bought bracelets to give to people for SIDS awareness. My wife and I also bought SIDS T-Shirts to help promote awareness.

We learned that a combination of physical and sleep environmental factors make an infant more vulnerable to SIDS. Some physical factors include:

Brain abnormalities-The portion of the infant’s brain that controls breathing and arousal from sleep isn’t working properly.

Low birth weight –Premature infants are at risk of not having a fully matured brain, which means they have less control of their breathing and heart rate.

Respiratory infections-In some cases (not in my case) many infants had a cold, which caused the infant to have breathing problems.

Some Sleep environmental factors include:

Sleeping on stomach or side-Placing infants in this manner may cause them to have more difficulty breathing than if they were placed on their backs.

Sleeping on a soft surface-This can block the infant’s airway; always avoid placing the infant face down, on a water bed or even a fluffy comforter.

Sleeping with parents-The risk increases when an infant sleeps in the same bed with parents due to the increased amount of soft surfaces to impair breathing; however, the risk of SIDS is lowered if the infant is sleeping in the same room as the parents.

SIDS is more commonly found in males, age 2-3months old (90% are under 6 months old). African Americans, American Indians, and Eskimo infants are found to be at higher risk, but SIDS occurs in all races and both genders. It has also been found that babies who have had siblings or cousins that have died of SIDS are at higher risk of being susceptible to it as well (not in my case. There has been no one in my immediate family that has died of SIDS except my son).

Maternal risk factors Include:

Young mother under 20 years Smokes cigarettes Drug or alcohol use Inadequate prenatal care

Currently, there is no known way to completely prevent SIDS, but only preventative measures to reduce the risk. The best things to do are to always put your infant on his/her back. Don’t sleep with your infant in the same bed. I also recommend purchasing the Snuza Breathing Monitor (Courtesy of raddestmom.com). The monitor works by a small clip that goes right on the baby’s diaper and vibrates if the monitor detects shallow/slow/no breathing for 15 seconds. If the monitor has to vibrate to wake the infant, the monitor will flash a red light to notify you. If it happens three times, the alarm will go off to further notify you until you turn it off. Until there is a guaranteed answer to what really causes SIDS, I will always be skeptical.

I’ve seen so many cases that were very similar to mine, where our kids were completely healthy and we did everything right, but they still died. I have come to terms with and firmly believe that it was his time to be with God. He is in a better place now, and I will be reunited with him one day.

35 years later, Sudden Infant Death Syndrome still a nightmare for ‘Forgotten Father’

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New research suggests risk factors for SIDS varies with the age of the infant. The biggest risk is co-sleeping.

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Michael David Roen was so eager to join the rest of his family that he arrived four days early — Dec. 27, 1983. Gary, his dad, was amazed at the perfect little being his first-born was.

Less than three months later, on March 15, 1984, Michael David was gone, a victim of Sudden Infant Death Syndrome.

“He would have been 35 this year,” said Gary Roen, who still carries such a grief that it propelled him to write “The Forgotten Father,” which recounts what he believes remains a common attitude towards fathers who have lost children, whether from SIDS or other causes.

“When my son died of SIDS, no one came to ask me how I was doing, not even once,” said Roen, of Orlando.

“In the course of putting this book together more than 30 years later after talking to numerous fathers, they all say the same thing. Nothing has changed.”

Roen will be in Brevard on Aug. 18 to discuss his books and other works at the invitation of the Space Coast Writers’ Guild. He wrote the book to raise awareness about the need to reach out to grieving fathers.

While attitudes toward helping fathers grieve may still need to change, fortunately the occurrence of SIDS, also known as cot or crib death, has declined since the 1980s when Michael David was born. However, according to the National Sleep Foundation, it remains the leading cause of death in children between one month and one year of age.

“The newest data shows a decline in incidence since the institution of “Safe Sleep” practices for babies, said pediatrician Dr. William Knappenberger of Pediatrics in Brevard. “This means placing a child in a bassinet or crib on his or her back and without pillows, blankets or stuffed animals, which can obstruct the child’s face and breathing.”

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Baby Box Co. aims to reduce the risk of SIDS by providing safe sleep spaces for babies and education to parents.

While raising awareness of this has reduced SIDS cases, it has not eradicated the problem. Causes of SIDS can remain unexplained even after an autopsy and thorough medical examination, but researchers have identified factors that may play a role in SIDS. In addition to the baby’s sleeping position, tobacco smoke in the home has also been pointed as a culprit for SIDS deaths.

“The risk of SIDS is increased when there is smoking in the home, so parents should always go outside to smoke and wear a cover shirt to prevent the baby from inhaling the fumes from the parent’s clothing,” said Knappenberger.

In Michael David’s case, second-hand smoke was not an issue.

“No one in the household did (smoke), nor anyone else in my family,” said his father.

There is a genetic component, but it typically does not surface early.

“It is sometimes discovered later, when another family member has sudden unexpected death due to cardiac arrhythmia,” said Knappenberger, who recommends that all parents and siblings of a SIDS infant undergo EKG testing.

To help further lower the number of SIDS deaths, the State of Florida continues to expand the number of genetic metabolic syndromes for which it tests after a day or two of feedings.

“This is required before hospital discharge and can identify conditions which might appear to be SIDS later, but which are treatable with special diets, etc., thereby avoiding the buildup of toxic byproducts of metabolism in such patients” said Knappenberger. “When I began practicing, the number of such syndromes was five and now is 35.”

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A new study says sleeping in the same room with an infant during the first year reduces the risk of sleep-related deaths. Here are a few other ways to ensure a safe sleeping environment for your baby.

Additional risk factors include premature birth or low birth weight, the mother’s age being younger than 20 years, smoking by the mother before the baby’s birth and the use of couches, daybeds or waterbeds and of loose bedding materials such as blankets and pillows.

SIDS is thought to occur when the baby has difficulty controlling breathing or cardiovascular functions. An undiagnosed delay in the parts of the brain that control these activities may combine with other events to cause it.

There are no warnings for parents of SIDS babies. In most cases, the baby looks perfectly healthy hours before he or she dies.

Michael David was a perfect example. He seemed fine to his parents the evening before he died, except for a little case of sniffles that made him fussy. At two-and-a-half months, he was at the peak stage for SIDS to occur. As a baby boy, he was more at risk than if he had been born a girl.

However, looking back, Roen wonders if there might have been some warning signs.

“I don’t even remember hearing the word SIDS until after his death,” he said. “We knew nothing. We thought we had a perfectly healthy child. SIDS came out of nowhere.”

To make matters worse, law enforcement officials were initially suspicious of Michael David’s death.

“The police have been taught to expect the worst and the Sheriff’s Department at first thought it was a murder and confronted us,” said Roen.

While his wife was granted several weeks’ leave after the death of her baby, Roen was expected at work after three days.

“People didn’t want to talk about it with me,” said Roen. “The father is never considered after the death.”

Roen and his wife eventually divorced, and he never had any other children.

“I don’t know why God did this to us, but you either wallow in your grief or accept it and try to live the rest of your life the best you can,” he said.

Every March 14, the day before Michael died, Roen lights a candle in his son’s memory.

“As long as I’m alive, I will remember my son,” he said.

The Forgotten Father

Gary Roen, author of The Forgotten Father, will speak to the Space Coast Writers’ Guild at 1 p.m. Saturday, Aug. 18, at Garrett’s Run Condo Association Clubhouse, 7900 Greenboro Drive, West Melbourne. Roen is an author, agent and syndicated book reviewer. For more information, visit scwg.org.

Mum’s heartache after losing 8-month-old son to SIDS

The second Kyrstyn gave birth to her son – she felt complete.

The 21-year-old cradled the beautiful baby Mayson in her arms, his face lighting up with a bright smile.

‘How could I be so lucky to have two gorgeous girls and now my little prince?’ she thought to herself.

Eight months later, she would be in the same hospital, holding her son in the same way – but he would be gone.

As she held her newborn son, everything fell into place. Image: Love What Matters

“I was in total bliss with the direction my life was going”

“I saw a bright future for him,” Kyrstyn wrote in a heart-wrenching piece on Love What Matters.

“I saw it all; tee-ball practise, birthday parties, learning how to ride a bike, going to prom, falling in love.

“I saw it all in this bright, amazing, happy, and healthy little boy.”

The next eight months passed in a blur, Mayson meeting every milestone, smiling happily out at the world – especially when his twin sisters, Violet Ann and Lilah Nicole, came into the room.

“I was in total bliss with the direction my life was going,” the mum-of-three said.

The gorgeous boy was growing and full of life – and then he was gone. Image: Love What Matters

Then one day everything changed …

Mayson went down for a nap and never woke up again.

There were no signs, nothing anyone could have been done differently – he was just gone.

“I remember all my neighbours watching as I collapsed on my front lawn sobbing and begging everyone to get into the car so we could rush the hospital,” the US mum said.

“I remember running into the ER, asking about my son in between sobs, and being sent into a room where the doctor came in, looked me in the eyes and said, ‘I’m sorry.’

“Just like that, every part of my soul and the person I was completely shattered; and I felt every part break piece by piece.”

The devastation was raw – how was he suddenly gone? Image: Love What Matters

“He was so cold”

She was led into a quiet room where her baby lay peacefully covered in a blanket.

“I held him and cuddled up into the bed next him, just to lay with him one last time,” Kyrstyn said.

“I remember thinking to myself, you never appreciate feeling someone you love laying warm next to you until they’re not warm anymore.

“He was so cold.”

Krystyn just couldn’t believe that her little boy was gone. Image: Love What Matters

A broken mother who just couldn’t let go

Eventually, the coroner came to take the little baby away, but Kyrstyn found herself unable to let go.

“I remember telling the coroner she would need to take my son from my arms, as I could not hand him to her,” she said.

“My mother says she will never forget the sounds and pain that left my body when they took him.

“I will never forget that feeling.”

This was a day she had never imagined for her baby boy. Image: Love What Matters

A club no parent would want to join

Overnight, Kyrstyn had been introduced to the harsh reality of Sudden Infant Death Syndrome (SIDS).

She had become a member of a club that no parent would ever want to join.

“As parents, we think of our children as almost immortal because they are supposed to outlive us,” she wrote.

“As parents, we cannot possibly fathom how to live without our beautiful creations, but unfortunately that’s not the reality of parents like me.”

Mayson was so peaceful, he almost could have been sleeping. Image: Love What Matters

Eight months wasn’t long enough

The pain was agonising – she spent days unable to work, care for her girls – or even get out bed.

It was impossible to fathom that the future she planned for Mayson would never come to fruition, that the time they spent together was so brief.

That he would never even have a first birthday party.

They decided to celebrate the birthday that their little boy would never see. Image: Megan Nutter/Lil’ Lemon Photography

An angel baby photo shoot

In the throes of her endless grief, she realised that there was something she could change.

She began messaging photographers, asking them to do a “first birthday for an angel baby photo shoot.”

After being turned down by several, Kyrstyn found Megan Nutter, from Lil’Lemon Photography, who was more than happy to do the shoot.

Mayson’s three-year-old twin sisters celebrating their brother’s birthday. Image: Megan Nutter/Lil’ Lemon Photography

“We are not alone”

That photo shoot changed Kyrstyn’s perspective on her grief.

“I realised that maybe, just maybe, I can take my experience, educate, and end the stigma of infant and pregnancy loss,” she wrote.

“To show other bereaved parents they are not alone.

“Everyone says they are sorry and they are there for you, but time moves so quickly and those people move on. Yet you feel stuck and alone, so very alone.”

After losing my 8-year-old son to cancer, I am not afraid of death

Editor’s note: This article has been republished as part of America’s special 110th anniversary issue. It was originally published is Aug. 16, 1997, issue of America.

My eight-year-old son, Jamie, died of cancer on Feb. 8 of this year. He was the second of our four children, all of them boys. Some weeks later, I was asked to tell a group of our friends how my perception of heaven had been changed by the experience of Jamie’s sickness and death. This is pretty much what I said.

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When Jamie was diagnosed with Burkitt’s lymphoma in August 1996, the prognosis was very good. That was a great help, because it would be nearly impossible for parents to put their child through chemotherapy and radiation treatments without trusting that the child would be cured by these procedures. Jamie’s course of treatment also included a bone marrow transplant.

Throughout the six months of Jamie’s illness I believed both that my son would be cured and that God’s will controlled the ultimate outcome. When Jamie died, my perception of heaven remained one of peace, love and joy. But I believe that the depth of that peace, love and joy is beyond our ability to imagine while here on earth. What has changed for me, since Jamie died, is my perception of death itself.

Jamie had been home from the bone marrow unit for 11 days when he died. The second or third of those nights—Jamie knew that his cancer had returned and a medical cure was no longer possible—he very patiently told me, “Mom, you don’t have to get up every time you hear me. Sometimes I’m just praying and talking to God. I’ll call you if I need you.” When his dad asked, “Does God talk back to you when you talk to him?” Jamie looked at him with a twinkle in his eye and very quietly explained, “Dad, I don’t hear God with my ears. He answers me in my heart and I feel better.”

Jamie replied that he did not want to die, but if he had to die, he wanted me and his dad to go with him.

My relationship with Jamie had always been one of honesty. Before his illness and certainly throughout his illness, he trusted that my answers to his questions would be honest. When the cancer returned for the second time, he looked at me and started crying. He simply said, “That means I’m going to die.”

I replied: “That means that the medicine can no longer help. Not one of us knows the exact moment that God will call us home to him. It means that it’s time to go home and be together for as long as God has planned. He will either cure you while you’re here with us or cure you when you go home to him.”

Jamie replied that he did not want to die, but if he had to die, he wanted me and his dad to go with him. My response was, “Daddy and I want you to be with us, too. God won’t take you home to be with him until you’re ready.” I then spent the last week of Jamie’s life praying that God would honor these words that I had spoken in love to my son. In Is. 51:12, God tells us, “I, even I, am he who comforts you….” I thought of this verse over and over again, asking God to comfort Jamie, his brothers, his father and me. Of course I prayed for the miracle of a cure, but I also prayed for comfort and grace—to accept God’s will regardless of what I felt to be best.

•••

James was happy to be home. He was tired and could get cranky, especially with his exuberant younger brothers, but he was deeply content to be home. He spent hours building Legos with his dad, sorting sports cards and filing them in their books and following Duke’s basketball team, now that the football season had ended for his beloved Jaguars. It wasn’t until Friday, Feb. 7, that Jamie’s energy level declined drastically, and I started feeling that we were nearing the end. He still wanted me to read aloud to him. We were in the middle of the sixth book of C. S. Lewis’s Chronicles of Narnia and he also liked to hear selections from a book entitled Someday Heaven.

In a clear, loud and strong voice, Jamie looked up toward a corner of the ceiling and said, “But I want to stay.”

By three o’clock the following morning, Jamie’s breathing had become more labored. From that moment on, either my husband or I was with him throughout Saturday. Jamie dozed on and off. He didn’t talk a lot because he had difficulty breathing; but he was awake, aware of what was going on around him and able to make his needs known to us. In mid-afternoon, I was lying on the bed next to Jamie, and his dad was sitting at its foot. Jamie’s brother, Andy, and his Nana were close by. In a clear, loud and strong voice, Jamie looked up toward a corner of the ceiling and said, “But I want to stay.”

He said nothing else. I asked him if he was talking to me or some other one of us. He shook his head to tell me no. After this he closed his eyes to rest. We all looked at each other in wonderment and, I’ll admit, some disbelief. Could we really have heard and understood what we thought we heard? There is no doubt in my mind that Jamie was talking to an angel or to Jesus himself who was waiting nearby. Later in the afternoon, around 5 P.M., Jamie looked to the same corner of the ceiling and said emphatically and loudly, “Go away!” Then, he once again closed his eyes. Paul and I were the only ones in the room with him at that time, but he had not been talking to us. I guess I should say that we were the only ones visible in the room at that time.

•••

Later that evening, when our house was quiet, Paul and I were discussing sleeping arrangements—who would sleep where. Jamie quietly watched. After I had showered and was sitting to put socks on my cold feet, my husband said, “Tina, Jamie wants you.” I could see both of them from where I was sitting, and since I hadn’t heard Jamie say a word, I wasn’t overly rushed or concerned. Paul said again: “Tina, Jamie wants you. He squeezed my hand and I know he wants you.”

He was sitting in my lap, and his dad was holding his hand as he took his last breath and relaxed against me, letting go as he went home to be with the Lord.

I calmly walked toward the door of his bedroom. As I entered his room, he looked at me with both eyes wide open. (This was unusual, since the cancer had affected his right eye and he had been unable to open it.) Then he shakily lifted both arms open wide, palms up. My first reaction was that something was wrong, and I quickly went to him and scooped him up in my arms and held him close. He was sitting in my lap, and his dad was holding his hand as he took his last breath and relaxed against me, letting go as he went home to be with the Lord.

•••

I thank God every day for letting me be with Jamie when he died. As devastating as it is to have lost my son, not to have been present and to have held him as he died would have been more than I could have borne. God in his wisdom understood this. He also honored a promise that a mother had made to her son and did not take Jamie home until he was ready to go. God truly is a God who comforts. I do not pretend to understand his wisdom, nor do I pretend to be happy with his decision to take Jamie to himself. I do look forward, however, to being reunited with my son when God calls me home too.

Experiencing the death of my son has removed my fears and uncertainties surrounding death. Since I was a young child, I have believed in Jesus’ promise of everlasting life, but that transition called death was always just a little bit scary to me. Watching Jamie die with such grace and complete trust in Paul, me and God has removed my fears. I now see death as a short journey. The Bible tells us that getting to heaven does not take longer than a day. Dying is simply a journey from our life on earth to our eternal home. While I am eager to live, I am also eager to take the journey when God calls me. I will go without fear, knowing that Jamie will be there along with Jesus and the angels that guided him into the life that is without tears and without end. Jamie was not perfect, but he had a kind and good heart. I pray that God will give me a heart for him, like the heart he gave my son, and I repeat a wise man’s words:

Give me a pure heart, that I may see Thee,
A humble heart, that I may hear Thee, A heart of love, that I may serve Thee,
A heart of faith, that I may abide with Thee. —Dag Hammarskjöld. Markings

3 Beautiful Things I Learned When My 3-Year Old Daughter Died Of Cancer

Oct 23, 2017 · 13 min read Charlotte Lili, 3 days before she died of the rarest, most agressive and most lethal children’s cancer.

We were travelling when we got the news. Our little family had just spent a magical white Christmas together in the beautiful Old City of Quebec. Right before that, we’d been exploring the pristine rainforests of Costa Rica. We’d marvelled at warm sunsets streaked across Venice skies, and we soaked in the golden sun on white sandy beaches in Fiji. We were living the dream.

Now, sitting on an uncomfortable futon inside our AirBnb in Austin, Texas (some 9,000 miles from home) — I felt sick to my stomach. Our dream was about to turn into a real-life nightmare.

My wife, Rebecca, had just gotten off the phone. She looked pale. We had arranged an MRI scan for our 3-year old daughter, Charlotte in Austin after we noticed that her right neck gland was begining to swell. The Doctor had just phoned with the results. By the look on Rebecca’s face, I knew the news wasn’t good.

I don’t think anything could have prepared me for what was to come next. I was about to enter the scariest, roughest and most diffcult time of my entire life. This was something I never imagined would happen to me. My little angel, my funny little friend had just 9 months to live.

Charlotte Lili, 1 week after the diagnosis.

My entire life was about to be turned upside down, my heart torn out, ripped to pieces and trampled in the dirt — and there was not a single thing I could do to stop it. Rebecca and I had just been enrolled in Hell 101 — an intensive course to teach us 3 things that would change our world forever.

1. Life is short.

Focus on what’s important. Don’t waste a single moment. Charlotte said this best. As she laid in her hospital bed in Australia, receiving her chemotherapy one afternoon, I was frantically and desperately Googling for any information I could find about her rare disease on my iPhone. Charlie had been trying to get my attention the whole time, but I kept telling her to wait because Daddy was busy.

That’s when she began to sing. I can still hear that soft, squeaky voice and her beautiful otherworldly tune.

Put your phone in your pocket, put your phone in your pocket for me…

And that’s when it really hit me. My heart dropped to the floor and tears flooded my eyes as I realized that Charlotte had spent most of her life trying to get my attention.

But Daddy was always busy.

In her short lifetime, I had:

  • Built a mobile advertising Startup to $11 million valuation in 6 months.
  • Acquired 20 million users for my bootstrapped mobile app company.
  • Generated millions of dollars in affiliate commissions with Facebook Ads.

But none of that means anything when your baby daughter is dying.

Me at the height of my mindless pursuit of wealth.

There was always a business idea to work on, another email to send, more money to make. I feel so stupid looking back — for believing the lie that money was worth more than my family. I never fully appreciated Charlotte until that day when I realized that she wouldn’t be around forever.

From that moment on, I vowed to give her my undivided attention. I wanted to make up for lost time. And I’m so glad I did. All the money in the world can’t buy me one more hour with my little girl. Those final months were so, so precious to me.

Charlotte went from completely healthy, to dead in just 9 months. It was shocking and sudden, but I am so grateful that we did have some warning. Over those 9 months, I was able to show her just how much I loved her. I can’t imagine what it would have been like to have lost her suddenly.

Her little song on the hospital bed that day changed me forever. It became the chorus in one of my own songs, and it serves as a constant reminder for me to keep my focus on the things that matter.

A song I wrote, inspired by Charlotte’s beautiful singing on her hospital bed.

2. Life is weird.

There were a lot of weird and unexplainable events surrounding Charlotte’s sickness and death. Most of them I will leave for another post, but this is something that I feel to mention here.

Charlotte left this world looking into my eyes, singing sweetly as she faded away. It was nothing like the doctors had told us would happen. When suggesting that we remain in their Palliative Care Ward, the Oncologists had explained all the possible things that could go wrong at the end, in graphic, bloody detail. This really annoyed me because they had said these things in front of Charlotte, who was the most intelligent 3-year old I have ever known and obviously understood what they were saying. When they left the room, Charlotte just looked at me and said,

Let’s get out of here.

By this stage, I had learned to listen to her advice. We left the hospital and were able to spend her final night at home together. Some of the strangest events happened that night — things I won’t discuss here, I will save them for another time. Let’s just say there was magic in the air.

Charlotte hadn’t slept much at all in the three nights leading up to her death. Because of the size and position of her neck tumor, laying on her back seemed to block her airways and wake her up. After finally falling back to sleep again, the loss of breath would make her panic and wake her up again. It was an awful cycle that seemed to make her scared of sleep itself.

The sleep deprivation was making her very irratic, and it was really scary for Rebecca and I. We had no idea what would happen to her if she didn’t finally get some sleep.

At one point, I worked out that if I held her in a certain way and leaned my shoulder against the door frame, standing at an angle, she could breathe properly and get 10–20 minutes of sleep at a time. I had to stop myself from falling asleep so that I didn’t drop her. It was a torturous process.

In the early hours of her last day, Charlotte was finally able to get some sleep on her own, which meant I could lay down and get some sleep myself. When the sun rose that morning, I woke to hear her screaming and pointing directly at me.

Wake up!

I knew that something was wrong. The color was leaving her face and lips, and she wanted her Daddy. Rebecca looked so scared. I frantically grabbed Charlotte and ran outside with her. I thought that if I held her under the sunlight that she might regain some energy.

As I held her, Charlotte looked up at me and mumbled in weak voice,

I want to lick it.

Lick what? I had no idea. But then I remembered her unfinished icecream in the freezer. We had bought Charlotte her very first icecream just a few days before — it must have made an impression on that cheeky girl.

Charlotte’s first icecream. A very happy day.

Rebecca quickly grabbed the icecream, and gave Charlotte one last lick. I remember thinking that we didn’t have long, that these were Charlotte’s dying wishes. Our little dying girl had one final request.

Let’s go for a drive!

This was one of Charlotte’s favorite things to do, so without waiting a second, we jumped into the car and just drove. Rebecca took the wheel and I jumped in the passenger side, holding Charlotte on my lap. We didn’t know where we were going. We didn’t know what was going to happen. We were just screaming out in desperation like two crazy people whose lives were being ripped to shreds.

It was a sound that we had been chanting out for months with a tone, whenever we were lost for words to pray.

Ahhhhh!!!!!

This time it was more of terrified scream, a cry of desperation to whoever was listening. As we drove, Charlotte looked up at me and joined in the chanting with her sweet little voice as she was fading away.

Ahhhhh!!!!!

At that point, we arrived at a park, seemingly chosen by Charlotte herself. I quickly scrambled out of the car and laid her down under a scraggly pine tree. It was so beautiful, but when Charlotte took her last breath, I was absolutely devastated. I screamed to the sky in desperation, frantically giving her CPR, hoping that by some miracle she would breathe again and come back to life. The final belching sound that came from her lungs made me sick to the stomach. I could taste death on my lips.

Would you like a blanket for your little girl?

A kind neighbor had witnessed the traumatic scene and had come over to show support. I remember thinking how kind she was to call my Charlotte a little girl and not a dead body. Not a yucky, broken, cold, pale dead body with no life in it.

My little girl was dead, but somehow I knew that it wasn’t the end. I know that sounds strange — I saw and touched her lifeless body as she lay there on the grass, under that humble tree. But something told me that it wasn’t over yet.

The park in NSW, Australia where Charlotte took her last breath.

Right at that moment, deep within, I had a strange knowing that another baby was coming. It would be a girl, she would look like Charlotte and she would be born around Charlotte’s birthday. I felt very strongly to call her Indica, and felt that she would be associated with the Sun. Again, I know that sounds weird, I don’t know what it all means, I’m just telling you what happened.

A few weeks after Charlotte died, Rebecca took a pregnancy test – it came out positive. We were so happy. We decided that we didn’t want to find out the gender of the baby.

Soon after that, I had a dream. In that dream, I was told very clearly that we were going to have a daughter, and that we were to call her Sarah. When I woke up, I was hesitant to tell Rebecca because I didn’t actually like the name Sarah all that much! But that same morning, Rebecca woke to tell me that she’d had a dream, and in it, she was given the name for our future daughter — Sarah.

To get the same message in a dream on the same night was very mysterious.

Sure enough, 9 months after Charlotte passed away, Rebecca gave birth to a little baby girl. She had gone into labor on Charlotte’s birthday, and Sarah Indica was born 6 days later. We’d organized a home birth, and although we had a Midwife on standby, when the time came, Rebecca and I were alone.

Little Sarah Indica at 8 months old.

It was a beautiful, peaceful water-birth. Rebecca handled it all so well, I have so much admiration for that woman. Luckily I had Googled “how to deliver a baby” the night before, because Sarah came out with her umbilical cord wrapped around her neck. Armed with the latest skills in Midwifery, I was able to safely put my finger between her neck and shoulder and pull the cord up over her little head. Then pop, out she came!

Charlotte Lili (left) and Sarah Indica (right) — born 9 months after Charlotte passed away.

Age for age, Sarah’s resemblance of Charlotte has been uncanny. They also share many personality traits and tastes. Mine and Rebecca’s gene pool seems quite diverse, especially considering the look of our son, Mika. The probabilty of getting another daughter right away that is so similar to Charlotte messes with my head, I can’t work it out. But it makes me happy.

Our little family — Me, Rebecca, Sarah & Mika.

At this point, we don’t talk about it much any more, and have just learned to accept the fact that they are very similar, and thank God every day for the beautiful blessing given to us. The experience has been so deeply healing for us on a psychological level. To see a familiar face filled with such happiness, warmth, life and vitality really does our hearts good.

People deal with grief in different ways. For me, it has helped me so much to let out the pain and trauma through creative expression. My songs have had mixed reactions from family and friends, as I move through the process of coming to terms with my daughter’s death and display that in my work.

A song I wrote about my last days with Charlotte. When her little legs stopped working from atrophy, I held her up and we danced around the room together one last time. A song about the beautiful change that Charlotte has brought to my life.

While some family and friends have seen my creative work as proof that I have gone crazy (which I have), it’s probably the very thing that has prevented actual madness. Death of a loved one is rough man, no matter how you slice it, and the grieving process takes time. It’s not as simple as getting a hair cut, having a shave and dressing like you’ve got it all together.

My song about the trauma caused by Charlotte’s death. Sweet beats for the weird kids.

Charlotte’s life and death has definitely set our lives on an interesting trajectory. That little girl came into this world so shy and unable to express herself, but she left this place singing and dancing. She found her freedom.

The night before Charlotte left this Earth, she shouted out,

Set the people free!

We had no idea where those words had came from — not something she would have heard at home. It gave us goosebumps.

And it certainly set us free.

Charlotte taught us how to really let it go. Since leaving her legacy 2 years ago, we’ve done lots of things that we never would have done otherwise;

  • A 3-day Vision Quest in the middle of the Australian desert.
  • A 6-month road-trip to Byron Bay, that ended in buying a 77-acre hippy commune next to a rainforest.

Singing Rainbow songs at the commune. I am a Child of the Universe.

  • A few months of living together with the hippies before eventually selling everything we owned.
  • We used the money to pay for a 3-month spiritual pilgrimage with friends to Israel, Egypt, Southern France & Spain.

Journeying through Israel, Egypt, Southern France & Spain with our friends. Dancing in Egypt.

  • We joined in an Ayahuasca Ceremony in Israel.
  • Had some kind of initiation inside the King’s Chamber of the Great Pyramid.

Chanting in the King’s Chamber.

  • Continued the journey with our family to Cyprus, Portugal and Northern California over 3 months.
  • Buried myself in the quartz crystal sand of Siesta Key, Florida.

Meditating in the quartz crystal sand of Siesta Key, Florida.

  • Wrote a song about Venice Beach and our journey that went viral in LA on Facebook.

My song that went viral in LA on Facebook.

  • Attended a dress-up Pride & Prejudice Ball to live one of Rebecca’s dreams.

My beautiful wife, Rebecca and a random Leprechaun.

  • Returned home to Australia to help my beautiful mother through her Breast Cancer treatment.
  • Started running weekly “Song Circles” to help the local community express themselves and connect with Spirit.

Our first Sacred Song Circle on the Central Coast, NSW, Australia.

  • Held a Universal Sing-Along with our family, live on Facebook.
  • Rebecca was asked if we would tell our story at a local storytelling community night.

Rebecca and I telling our story at Long Story Short in Gosford, NSW, Australia.

  • We sold everything for a second time to finance another trip to Israel.
  • Ventured to Cyprus in search of Aphrodite.
  • We reached our bottom dollar in Nicosia, so I started performing on the street with my guitar for tips, to pay for food and accomodation.

Busking on Ledras Street in Nicosia, Cyprus.

  • We flew to Finland to meet the real Santa Claus.
  • We worked at a small farm in Lapland in return for food, accommodation and philosophical discussions.

Working on a beautiful farm in Lapland, Finland.

  • We travelled the Arctic Circle in search of the Northern Lights.
  • We were invited to Glasgow to join an electronic band.
  • Right now we find ourselves in a hostel in Helsinki, wondering what’s next for us…

Sure, some of this has got to be our Fight or Flight response caused by the trauma of Charlotte’s death. But most of it is just pure fun.

My new song about always being on the run.

Life is weird, and so are we. I would say that if you don’t have at least one person who thinks you’re crazy, you’re not truly living!

3. Life is beautiful.

Yes, my little tribe has had it pretty rough these past couple of years. Towards the end of all that yucky stuff, our energy was almost completely drained. But sometimes you just gotta dance it off! Life’s too short to be so serious. No matter what, you can always change the song and choose to smile.

A music video we made as a family for one of my songs in our hostel room here in Helsinki.

That’s why we travel so much and do weird things. These are the things we’ve always wanted to do, but probably would never have done unless Charlotte died.

It was death that gave us a real appreciation for life.

Everybody dies, but not everybody lives. We don’t want to do the same thing for 80 years and call it a life.

The world is infinite, you can literally choose to focus on any part of it you like. Forget the heavy stuff. Life is beautiful, life is spontaneous, and life is to be enjoyed.

You’re not here for a long time, you’re here for a good time, so get out there!

  • Look for signs that your child is ready to talk, such as asking questions or bringing up the subject of death. And look for signs that your child is done talking for the moment. These include changing the subject, looking away, fidgeting, or playing with toys.

  • Look for teachable moments, or everyday opportunities to talk about what your child is thinking and feeling. Teachable moments may include the death of a pet or the illness of a character in a book or a movie.

  • Use simple, direct language that your child can understand. For example, use the words death and dying, rather than misleading or confusing terms such as “passing away” or “going to sleep.”

  • Ask open-ended questions that give your child the chance to answer in his or her own way. For example, ask, “How did you feel when Grandma died?” Open-ended questions are better than “yes” or “no” questions, such as, “Were you sad when Grandma died?”

  • Look for hidden meanings in your child’s questions or comments. For example, your child may ask, “What do you think happened to Grandma after she died?” This may be your child’s way of asking what will happen to him or her.

  • Allow younger children to communicate through play or art. For example, your child may find it easier to talk about the feelings of a sick teddy bear or a child in a picture.

When discussing death, the following reassurances can be especially helpful for your child:

  • Reassure your child that he or she will not be alone. It is important for children to know their parents will be with them when they die and that parental love and support will continue.

  • Reassure your child that all pain and suffering goes away after death and never comes back.

  • Remind your child of the special things he or she has done and the teachers, friends, nurses, and others who will always remember him or her.

  • Discuss your family’s religious or spiritual beliefs about death and what happens after death.

  • Give your child “permission” to die, if you believe that will help. Many dying children feel guilty leaving their parents and worry about what will happen to their family without them.

How to meet your child’s needs

Although parents often feel powerless caring for a child with advanced cancer, you can take steps to help meet your child’s psychosocial and physical needs. As your child’s cancer progresses, the needs will change. Pay close attention to your child’s behavior to adjust to these changing needs.

Here are some tips to help your child experience the fullness of childhood for as long as possible:

  • Give your child time to play and engage in other age-appropriate activities, such as watching television, reading, or exploring the outdoors.

  • Encourage your child to continue attending school, even if he or she cannot attend full time. If your child must miss school for a long time, ask the teacher to have the class write letters, draw pictures, or make videos.

  • Encourage your child to maintain friendships and other meaningful relationships.

  • Encourage your child to continue setting goals. Short-term goals, such as learning to read or taking a special trip, help children gain a sense of achievement and give meaning to their lives.

  • Continue setting limits on your child’s behavior and practicing normal parenting. Without limits, your child will feel overwhelmed and out of control.

  • Advocate for your child to make sure that pain and other symptoms are quickly treated.

As your child’s cancer progresses and death approaches, he or she will have additional needs. Consider taking these steps during that time:

  • Give your child as much privacy and independence as possible.

  • Encourage your child’s end-of-life wishes. These may include giving away special belongings, writing letters to friends, or going on a special adventure. Learn about organizations that help children fulfill their wishes before the end of life.

  • Give your child time to say goodbye to family, friends, teachers, and other special people. This can be done in person, with letters, or through a parent.

  • Make your child’s health care team aware of your child’s ongoing physical needs, especially the need for pain management.

  • Talk about the physical symptoms and changes your child can expect as his or her cancer progresses. But avoid scaring him or her. Remind your child that his or her health care team will help make the symptoms better. Knowing what to expect will ease your child’s anxiety and fear.

How to find support for yourself

It is not natural for parents to outlive their children. Nothing can erase the sadness and distress that parents experience caring for a child with advanced cancer. But there are ways to make you feel less alone. The following suggestions may help you cope:

  • Talk with your spouse, family members, or friends about your feelings and fears. It is normal to experience emotions such as anger, guilt, and frustration.

  • Seek support from a professional grief counselor, or join a support group with other parents of children with advanced cancer.

  • Take advantage of offers for help from family and friends to ease your physical and emotional exhaustion.

  • Ask your child’s health care team to explain symptoms that happen close to death, such as skin and breathing changes. Knowing what to expect will help you feel more prepared.

  • Make sure advance directives and other such documents are in place before you need them.

  • Consider making funeral arrangements and other plans, such as deciding whether to have an autopsy, in advance. By planning ahead, you can spend more relaxed time with your child at the end of life and avoid making decisions in a crisis.

  • Spend time with your child, and tell him or her how much you love him or her. Some parents, children, and other family members find it helpful to look through photo albums and share stories and memories of times spent together.

Learn more about taking care of yourself as a caregiver.

Related Resources

How a Child Understands Cancer

Grieving the Loss of a Child

Care Through the Final Days