Window falls and children: Lauren’s story

With a New Year’s Eve party a few hours away, Ruth Chi sent her 5-year-old daughter, Lauren, upstairs for a quick nap to ensure she’d have the energy needed later to ring in 2018.

Ruth had just turned her attention back to party prep in the kitchen when she heard yelling upstairs. Suddenly, her eldest son ran past her and into the adjacent backyard.

Lauren had fallen from her second-story window and landed on the concrete patio below. Her brother cradled her in his arms.

“I ran outside the screen door and saw my son hugging Lauren, who was on the ground,” Ruth says.

Crying only slightly, Lauren seemed miraculously unharmed. Ruth carried her daughter inside and examined her body from head to toe. She didn’t see any blood or notice any obviously broken bones. Lauren could understand her mother’s instructions, was responsive and could speak.

The only thing amiss that Ruth noticed were faint red marks on the side of Lauren’s body and a small bump on the right side of her head. Not wanting to take a chance, Ruth brought her daughter to closest emergency room despite Lauren’s protests that she might miss the party.

After a few tests and just 20 minutes or so, the team at the hospital prepared the family to be brought by ambulance to CHOC Hospital’s level II pediatric trauma center. Critically injured children from across the region are transported and transferred to CHOC for the pediatric expertise only a children’s hospital can provide. CHOC’s trained trauma team cares for children and their unique physiological, anatomical and emotional needs with protocols and equipment designed for pediatric patients.

At CHOC, Lauren and Ruth were met by a team of experts who performed more tests and scans. Lauren was the 22nd patient to be treated at CHOC that year for having fallen from a window. The following year, CHOC would go on to see 15 such patients, and in 2019, an additional 24 patients. And in the first 10 months of 2020, CHOC has treated 18 patients who tumbled from a window, says Amy Waunch, CHOC’s trauma program manager.

The no. 1 reason why children fall from windows is furniture placed below, Amy says – and that is exactly what happened with Lauren.

With warm weather a near constant in Southern California, Lauren opened her locked bedroom window. The curious 5-year-old climbed atop her bed and pushed her head against the window screen to survey a nearby park.

The window had a safety mechanism in place to prevent it from being opened too wide, but children can slip through gaps any wider than 4 inches, Amy says.

All those factors, combined with Lauren’s size and strength, allowed her to push through the screen and plummet out the window and onto the ground.

The most common injuries resulting from a window fall treated at CHOC are head injuries like skull fractures and intracranial bleeding, followed by extremity fractures, Amy says.

Lauren, however, seemed just fine. She and her mother passed the time waiting for test results by talking and playing games.

But the family received sobering news at about 9 p.m. that night, when Lauren was diagnosed with an epidural hematoma, a type of traumatic brain injury when blood builds up between the outer membrane of the brain and the skull. This can create pressure on the brain’s tissue and can be deadly.

Lauren would need surgery right away, CHOC experts told the family, who quickly agreed. Lauren was taken to the operating room.

After about an hour, Ruth and her husband were reunited with Lauren in the post-anesthesia care unit.

“She responded well when we talked to her,” Ruth recalls.

After a three-day stay at CHOC’s main hospital campus, Lauren and her family headed home.

After several neurosurgery follow-up appointments, Lauren began treatment with pediatric neurologist Dr. Sharief Taraman. Additionally, Lauren underwent neuropsychologic assessment to determine whether the injury affected her cognitive function.

Today, three years later, Lauren is a happy and healthy 8-year-old with no signs that she survived a near fatal accident. In fact, Ruth even needs to remind her fearless daughter to be careful sometimes.

And she’s not stopping with reminders. The furniture has been rearranged in Lauren’s room, and Ruth continues to caution her friends about the dangers of children and window falls.

“Never say never, I tell people,” Ruth says. “I never would have thought this would happen to me or my family or my daughter. It’s almost impossible. Well, it happens.”

Learn more about CHOC's pediatric trauma services

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Navigating an epilepsy diagnosis and surgery: Geni’s story

Life was proceeding right on schedule for self-described “drama kid” Genevieve Masson. The 16-year-old, who goes by “Geni,” went to class, hung out with friends and spent time rehearsing musical theater at her high school.

“It was really a normal, not-so-exciting life,” she says.

school photo before epilepsy diagnosis
Life looked typical for Geni, pictured here in her eighth grade photo, before her first seizure.

But two years ago, when Geni was 14, something changed. A small lesion that had been in her brain since birth began making itself known. One night, she woke up and couldn’t move. She figured she was caught in a moment of sleep paralysis and didn’t give it too much thought.

Things quickly turned far more serious. A few days later, Geni was feeling tired at school and decided to take a nap in her coach’s office. That’s when she had her first full-on seizure.

Geni has no memory of what happened next, but those around her became alarmed as her body shook uncontrollably. A teacher called 911 and the next thing Geni knew, she was in an emergency room.

An MRI revealed nothing, as did visits to pediatricians. But not only did the seizures continue, they were occurring more often. The more severe ones occurred at night, while less noticeable ones were happening many times a day. Ultimately, she was diagnosed with epilepsy, but she wasn’t receiving the expert care she needed at nearby hospitals.

“I remember the day she had her first seizure. It was December 18,” says Susan Masson, Geni’s mom. “By that January, there were a couple more. It got to be about 15 to 20 a day. We knew we needed to be at CHOC. We needed to be at a place where we could be with an epileptologist.”

The Massons felt lucky to live fairly close to CHOC, home to one of the nation’s premier epilepsy centers for young people. CHOC’s Comprehensive Epilepsy Program was the first in California to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, the highest level available. That distinction means that CHOC has the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.

It was at CHOC that the Massons met Dr. Maija-Riikka Steenari. A pediatric neurologist, Dr. Steenari is an epilepsy specialist, also known as an epileptologist.

dr-maija-steenari-epileptologist-choc
Dr. Maija Steenari, pediatric epileptologist at CHOC

“It’s a fascinating field,” Dr. Steenari says of pediatric neurology and epilepsy. “The combination of working with brains and kids together is the best fit for me.”

What exactly is epilepsy? Basically, parts of the brain go haywire and emit unwanted electrical signals that can cause convulsions and seizures of varying strength. As Dr. Steenari describes it, it’s “a clump of brain cells that don’t quite work the way they’re supposed to, or a cluster of cells in the wrong place. They’re really irritable. They’re known to cause trouble.”

Epilepsy can be the result of brain injury, stroke or, in Geni’s case, a slight anomaly that was present since birth.

November is National Epilepsy Awareness Month, a time to remind people that epilepsy is both fairly common — nearly 25% of the population will experience recurring seizures in their lifetime — and it’s often treatable.

Like others diagnosed with epilepsy, Geni’s first option was medication. She was prescribed anti-seizure medicines, but they didn’t work.

Geni undergoes EEG monitoring at CHOC
Geni underwent EEG monitoring at CHOC to measure electrical activity in her brain.

“Medication works about 60 to 70% of the time,” Dr. Steenari says. “But adding more medications doesn’t always work. A second medication only works about 10% of the time. So, can we do something else to help them with their seizures? That’s where surgery comes into play.”

Having seizures meant that Geni was missing a lot of school, would not be able to drive and couldn’t be left alone. But her family and friends rose to the occasion and helped when they could. And Geni did her best to be a regular teenager.

“I was trying to lead a normal life,” she says. “I would still go to rehearsals.”

Geni needed two surgeries, the first one to determine exactly where the problem was. Dr. Joffre Olaya was her pediatric neurosurgeon.

Geni’s hospital room before epilepsy surgery
When Geni spent time at CHOC, her friends made special decorations for her room to show their support and cheer her up.

“We have these grids that we can put on the surface of the brain,” Dr. Steenari says. “We can map where the seizures are coming from within a few millimeters. We could make a very detailed map.”

The lesion was right next to the part of Geni’s brain that controls language. If her surgeon didn’t have an exact spot to operate, she could lose the ability to speak or write. But Geni was willing to take the risk. Each seizure could cause more damage to her brain and Geni wanted them to stop.

“The doctor said each seizure would do damage to my brain,” Geni said. “I don’t like having constant damage to my brain done. If surgery can take me back to where I can’t write or speak well, I was willing to take the chance.”

Geni prepares for surgery
Geni was all smiles leading up to her second epilepsy surgery.

The second surgery came a few weeks later. Doctors successfully removed the lesion, but Geni faced a number of challenges after surgery that her family was told ahead of time were possibilities. Geni lost automatic movement of her right hand, so she couldn’t do with her right hand what other people do without thinking about it. She was 15 at the time, so before surgery, she had long ago mastered writing without thinking about how to shape each letter. After surgery, she knew how letters should look, but she couldn’t make them. She also couldn’t tie her shoes, brush her hair or teeth, button or zip her clothes, or feed herself.  But Geni and her family treated these more like challenges than setbacks, and occupational therapy helped.

welcome home signs epilepsy surgery
To welcome Geni home after epilepsy surgery, her siblings decorated her bedroom.

“A few weeks after surgery, we went to the library and we got some preschool books on how to write. It was quite frustrating, but luckily, my brain still knew how to do it. It just needed to create new pathways. As soon as I did it, it got easier,” Geni says.

workbooks to help regain skills after epilepsy surgery
Preschool workbooks helped Geni re-master writing after epilepsy surgery.

Talking was hard after surgery, too. Geni would know what she wanted to say, but finding the right words took a little more time than it used to.

“Surgery had knocked over her file cabinet of words,” Susan explains of her daughter’s struggles post-surgery, which got better with speech therapy.

Geni’s family was with her every step of the way. It was heart-wrenching for her parents to see their daughter suffer, but they’re proud of how she handled her journey.

“I cry every time I remember how hard this was, and then I laugh at how much Geni thought it was simply annoying what she had to relearn. These kids are fearless little warriors,” Susan says of her daughter. “She’s a bubbly, vibrant, friendly girl. People love her. I don’t think it ever occurred to her that there was another way to manage through this. The limitations of life when you’re living with epilepsy can be staggering, but we didn’t have time to realize them. As soon as it came up, it ended. We got hit by a Mack truck and then it ended.”

Geni and family in 2019 before surgery
Geni and her family on vacation in 2019 before her epilepsy surgery.

Today, Geni has been seizure-free for 14 months. And while her right arm tires easily and she still sometimes has trouble finding the right words to say, someone meeting her for the first time wouldn’t notice.

Geni back on stage after epilepsy surgery
Geni was back on stage a few months after epilepsy surgery.

“I have my driver’s permit and I’m learning how to drive,” Geni says. “That’s where I am right now. I’m working on a project for my film class and also an online play “Clue.”

Geni should continue to improve with time.

“She’s made remarkable recovery,” Dr. Steenari says. “She’ll continue to get better. If we had let those seizures continue, she would have ended up being much worse in the future.”

Learn more about the CHOC Epilepsy Program

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CHOC neurosurgeon reflects on 2020, community impact

Dr. Joffre Olaya, a CHOC pediatric neurosurgeon, was recently named one of Orange County’s 25 Most Influential by Modern Luxury magazine. In this Q&A, he shares more about what he’s learned from 2020, the privilege of caring for a vulnerable population, and his work with as medical advisory chair for Make-A-Wish Orange County and the Inland Empire.

dr-joffre-olaya-choc-pediatric-neurosurgeon
Dr. Joffre Olaya, a CHOC pediatric neurosurgeon

How would you describe your mission?

As a husband and father, my personal mission is to keep my family safe, healthy and happy. As a pediatric neurosurgeon and physician leader, I want those same essential things for everyone else in the community. I support CHOC’s mission to nurture, advance and protect the health and well-being of children, as well as Make-A-Wish’s mission to create life-changing wishes for children with critical illnesses.

How does your work help the community?

I take pride in working alongside the incredible team of clinicians at CHOC’s Neuroscience Institute. Every day, we have the privilege of caring for the most vulnerable population. Shouldering this responsibility propels us to deliver the best possible care to our patients facing neurological disorders. I’m humbled that parents entrust us every day with their children’s medical care. I’m excited about the leading-edge technology at our fingertips making pediatric neurosurgical procedures safer and less invasive.

I also value my role as medical advisory chair for Make-A-Wish Orange County and the Inland Empire. From treatment to making a wish come true, I am involved in every step of a child’s journey inspiring hope. I’m a firm believer in the mind-body benefits of a wish — it truly brings a renewed energy to a child and is a critical part of their healing process.

What do you hope the world learns from these challenging times?

I hope we all realize how resilient we truly are as a community. Medical providers have quickly adapted to new guidelines amid a pandemic to continue providing safe, quality care for patients. Parents and caregivers have taken on additional responsibilities while trying to keep their families safe. Our community is learning to juggle even more than we already were.

What is your 2020 motto?

Appreciate the little things. Our lives have changed from having the freedom and safety of going anywhere, seeing anyone and doing anything. Now, for everyone’s safety, we go only where necessary, limit social interaction, — even from family, — and restrict our activities to keep our community healthy. I have learned to “stop and smell the roses.” I appreciate Sunday breakfast with my kids, a morning walk with my wife before work, the beauty of nature during those walks, and the refreshed feeling after getting a good night’s sleep.

What do you recommend to those that want to follow in your footsteps?

Set a goal, make a plan, find mentors and work hard to achieve your dream. Having grown up in poverty, I never would have imagined doing what I get to do today as a pediatric neurosurgeon. I love what I do and couldn’t imagine doing anything else. I have the opportunity to help others on a daily basis. I believe that devoting my life to helping others is the most rewarding thing I can do with my life.

What has been your silver lining this year?

The pandemic has forced us as a society to slow down. Personally, this has given me the opportunity to prioritize what is truly important. I have focused on spending more time with my family and taking care of my own health. Having limited travel options, I have truly enjoyed spending more time outdoors and hiking locally.

What does the world need more of now?

Hope. It is a scary time right now with people feeling threatened with their health and personal safety. After the realization of the pandemic, society has learned that our sense of reality can change in an instant and things are uncertain. Working at CHOC and with Make-A-Wish I have learned to appreciate how much hope can improve the outcome of a person’s life.

Learn more about CHOC's Neuroscience Institute

Related posts:

  • Window falls and children: Lauren’s story
    With a New Year’s Eve party a few hours away, Ruth Chi sent her 5-year-old daughter, Lauren, upstairs for a quick nap to ensure she’d have the energy needed later ...
  • Navigating an epilepsy diagnosis and surgery: Geni’s story
    Life was proceeding right on schedule for self-described “drama kid” Genevieve Masson. The 16-year-old, who goes by “Geni,” went to class, hung out with friends and spent time rehearsing musical ...
  • Wired for hope
    Every morning when she awakes, Sydney Amato begins her daily battle with her body. If she’s lucky, the 16-year-old will have gotten a handful of hours of uninterrupted sleep – dreaming, ...

Wired for hope

Every morning when she awakes, Sydney Amato begins her daily battle with her body.

If she’s lucky, the 16-year-old will have gotten a handful of hours of uninterrupted sleep – dreaming, perhaps, of doing what most healthy kids her age take for granted:

Hanging out with friends. Going to school. Learning to drive.

Because of a neurological condition called dystonia, Sydney, who is in excellent cognitive health but speaks and walks with some difficulty, suffers from involuntary and near-constant contraction of muscles in her neck, arms, legs and trunk.

Her mind is unable to control the painful jerking that makes most of her body twist and go rigid, her muscles moving out of normal sequence.

Born a right-hander, she can feed herself with some struggle using her left hand. She wants to dress and put on makeup herself, but those normally simple tasks become lengthy ordeals.

“My body fights me all the time,” says Sydney, trying to distract herself in her hospital bed one morning by watching an old episode of “Keeping Up with the Kardashians.” Listening to her favorite music – Ariana Grande, Lauren Daigle, Drake – can only temporarily transport Sydney away from her debilitating condition.

“She knows what she wants to do,” says her father, Louis. “But her body won’t let her.”

Specialists at CHOC are working hard to change that.

CHOC patient and her father
Sydney, pictured with her father.

A first for CHOC

Recently, a team led by Dr. Terence Sanger, a physician, engineer and computational neuroscientist who joined CHOC in January 2020 as its vice president of research and first chief scientific officer, and Dr. Joffre E. Olaya, CHOC’s functional restorative neurosurgeon, implanted several temporary electrodes into Sydney’s brain. Collaborating with CHOC physicians was CHLA neurosurgeon Dr. Mark Liker.

Dr. Terrence Sanger, chief scientist at CHOC Children's

The surgery marked the first time a patient with a movement disorder at CHOC underwent a procedure called deep brain stimulation (DBS).

Working in perfect harmony as a team, Dr. Sanger and Dr. Olaya oversaw the first portion of a three-stage surgery on Sydney. As the surgeon, Dr. Olaya placed the leads following advice from Dr. Sanger, the neurologist, on where they should go.

 In the procedure, millimeter-thick electrodes were precisely positioned into the basal ganglia region of Sydney’s brain – about 3 inches deep. The surgery involved the use of the ROSA robot, the same tool that has been used during brain surgery on epilepsy patients at CHOC since 2015.

Considered one of the most advanced robotized surgical assistants, ROSA — which stands for robotic operating surgical assistant — includes a computer system and a robotic arm. It’s a minimally invasive surgical tool that improves accuracy and significantly reduces both surgery and anesthesia time.

The ROSA robot helped with implanting and targeting the electrodes and a portable operating-room CT scanner confirmed their position.

Turning down the volume

 DBS is designed to ease Sydney’s condition by sending electrical currents to jam her malfunctioning brain signals.

Think of turning down the volume on your car radio.

“Nobody really understands the cause of dystonia,” Dr. Sanger explains, “but there’s probably too much electrical stimulation going on in the motor areas of the brain. We’re trying to calm down that extra noise.”

Although DBS dates to the 1960s, it wasn’t until the 1980s that the modern era of using it to treat adult patients with tremor and Parkinson’s disease began.

In 2000, Dr. Sanger, working with engineers, data scientists, neurosurgeons and others, began implanting electrodes in pediatric patients.

Instead of the established method of placing the leads at predetermined sites and hoping they worked, Sanger and his team, just as they did in Sydney’s case, placed temporary leads to best assess where they should go permanently based on patient response.

In 2016, Dr. Sanger began honing DBS to treat children with dystonia. Before the surgery on Sydney, Dr. Sanger had overseen DBS on 26 children using the same three-stage technique. He says 80% of those children have seen successful results.

Early signs

Sydney began showing symptoms of dystonia – tremors in her hands – when she was 5 ½ years old.

A year later, she was using a wheelchair. She had her first brain surgery at age 7.

Since then, “she’s been all over the U.S.” seeking the right treatment for her condition after several setbacks, her father says.

But her condition was not improving.

Early this year, a neurologist in Kansas City, Missouri, recommended that Sydney see Dr. Sanger.

“I asked him, ‘If Sydney was your kid, where would you go?’” Louis Amato recalls. “He said, ‘Hands down, Dr. Sanger.’”

The COVID-19 pandemic pushed Sydney’s surgery to mid-August.

Sydney already had two electrodes in her brain that were only partially working when she came to CHOC in early August for surgery.

After two extensive run-throughs with their team, Dr. Sanger and Dr. Olaya, in a six-hour procedure that at one point required nearly 20 people in the operating room, implanted more electrodes to give Sydney a total of nine.

Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC Children's
Dr. Joffre Olaya

After surgery, optimism

On Thursday, Aug. 20, six days after Sydney’s surgery, Dr. Sanger stopped by her room at CHOC Hospital. The room was decorated in purple, Sydney’s favorite color.

Dr. Sanger greeted her as CHOC staff members, joined by members of Sanger Lab, Dr. Sanger’s research laboratory that conducts research in pediatric movement disorders, prepared to have Sydney walk back and forth down a hallway while connected to electrical equipment programmed to record signals in her brain and muscles.

A thick coil of multicolored wires snaked from under a large white bandage covering Sydney’s head. Extending about 6 feet, the wires were plugged into specialized recording equipment controlled by Jennifer MacLean, a CHOC pediatric nurse practitioner whose job was to manipulate the strength of electrical charges affecting the four points of contact on each electrode.

The goal: determine which charges worked best and on which electrodes.

“It could have turned out that the DBS procedure made no difference,” Dr. Sanger says. “But we’ve seen a very good response in Sydney.”

For example, her once mostly useless right hand was working much better.

“It gives you goosebumps,” Louis Amato says.

After taking a bite of a veggie burger and sipping some water, Sydney started to walk.

Following her were seven CHOC and Sanger Lab specialists.

“Go nice and slowly,” Jennifer told Sydney. “You’re going too fast for us!”

Perhaps Sydney was anxious to get back to riding Tigger, a quarter horse, in her hometown of Carthage, Missouri. She has been riding him for six months.

CHOC patient horseback riding
Sydney is eager to get back to riding her favorite horse, Tigger.

“Her balance isn’t bad on the horse,” says Louis Amato.

Sydney also loves to tan by her pool and swim.

What she wants most, however, is to be freed from her body so she can return to school and do what most teens enjoy.

“It’s stressful,” says her mother, Angie. “She has a lot of friends her age, but she can’t do a lot of the things they do. She has her days when she can get really upset.”

Now, however, working with Dr. Sanger, Dr. Olaya and the entire team at CHOC, the Amatos are more optimistic than ever.

“We’re hopeful that this is going to be a big life-changer for her,” Angie Amato says. “That would be the best thing that could ever happen – better than winning the lottery.”

‘The A-Team’

After crunching numbers for a week to assess which of the nine electrodes proved to be the most effective based on how Sydney responded to varying degrees of electrical currents, Dr. Sanger and his team settled on four electrodes that were permanently used to treat her condition – three new ones, and one existing one.

The team performed this second surgery on Sydney in late August.

In the third and final surgery, successfully completed in early September, a rechargeable generator that powers the DBS leads was implanted in Sydney’s chest.

“As we get better and better at this and as the technology progresses, we’ll be able to do this on kids who are less sick than Sydney,” Dr. Sanger says.

Dr. Sanger and Dr. Olaya are poised to dramatically improve the lives of many more patients like Sydney at CHOC.

“I’m really excited that we will be doing more of these procedures to help pediatric patients with movement disorders and significantly improve their quality of life,” says Dr. Olaya. “I look forward to continuing to provide this type of personalized care.”

a CHOC patient poses with her mom
Sydney, pictured with her mother.

Angie and Louis Amato say Sydney has never gotten this much special attention during her 11-year-plus medical journey.

“Here at CHOC,” Louis Amato says, “we feel like we’re with the A-Team.”

Says Sydney: “I’ve never felt this much confidence and this good about treatment before.”

Learn more about deep brain stimulation at CHOC 

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What I’ve learned about life from my 3-year-old daughter

By Bud, father of Emma, a CHOC patient; and founder of the Squires Guild, a group part of the CHOC Foundation that connects patient parents with each other while raising awareness and funds for CHOC Hospital in Orange and CHOC at Mission Hospital

My daughter Emma, who is 3 years, 4 months and 8 days old, has a list of diagnoses that read like a medical textbook — I’m sure parents of CHOC can relate — but, her main diagnosis is pachygyria. It’s a congenital malformation of the cerebral hemisphere that results in unusually thick convolutions of the cerebral cortex, giving her brain a smooth appearance and giving my wife and I an excuse to call her a “smooth operator.” We also call her “the Kartoffel” which means potato in German because she looked like a potato when she was little. The name stuck!

Since her condition deals with the brain and is so severe, all of her other body systems are affected. She isn’t ever expected to roll, sit, walk or talk. She struggles with multiple forms of epilepsy and is expected to develop more forms. She also has poor swallow control, which could cause her to aspirate on foods or liquids.

We found out about Emma’s condition when she was 7 months old. She had missed a few developmental milestones and then started having infantile spasms. We are thankful that our pediatrician, Dr. Dawn Bruner, is part of CHOC Primary Care Network. She referred us to, CHOC’s Neuroscience Institute where we ultimately received Emma’s diagnosis.

bud-and-emma-outdoors
Bud with his daughter Emma.

With all the medical support we had (and still have), it was hard to take in the news of Emma’s diagnoses. Even after three years, it has been a continual process of mourning the loss of the life we thought we were going to have as well as a tremendous exercise in learning to love someone for who they are, and not who we want them to be.

There have been more medical emergencies with Emma than I can count, and often during those times, I feel inefficient, broken. Dads are supposed to protect their children, make it all better and make sure nothing hurts them. But caring for Emma has made me learn that I am just a different kind of dad than what I originally thought I was going to be. I am still strong and effective, and most importantly I have allowed myself to be totally me, just like Emma is totally her.

Emma is fearless. Anything she does, whether it’s laughing, crying, yelling or singing, she does with full conviction. She is the kind of person I hope to be like a little more each day. She is my absolute joy, the light of my life. I am but a humble peasant to my Princess Emma and I don’t mind at all.

bud-and-emma-at-home
Bud and Emma at home.

It is because of Emma that I am inspired to learn new music, read new books—all based on whether I think she would enjoy them. She has taught me that the more time and energy I put into pushing back against and denying the brutally honest reality that she will not live long or peacefully, the less time and energy I have to truly experience life with her. And as her dad, that’s my biggest joy in life — really living with Emma.

My greatest hope is that she knows that she is loved. I hope she finds her life, however long or short it might be and in whatever way she can, to be rich and meaningful — just like she’s made my life rich and meaningful simply by existing.

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