Preston loves country songs – the louder, the better.
So, one morning in mid-October, Ana Watson cues up Jason Aldean's "Big Green Tractor" on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
Preston starts singing.
Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
"BAM!" Ana writes on Facebook. "Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!"
Is This Finally It?
Four months after they arrived in Colorado – one of hundreds of desperate families moving here for medical marijuana for their children – the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister's two-wheel scooter without falling. He remembered to say "Please" and "Thank you."
It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
Her new friends in Colorado – parents who, like her, came to the state seeking hope through cannabis – cheered on her social media updates.
"AWESOME!!" one wrote beneath the video of Preston singing.
"Beautiful," another wrote. "So beautiful."
How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.
She also began giving him his traditional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
So optimistic is Ana that, as Preston's 13th birthday approaches, she makes a bold decision: It's time for her son to get his first real bicycle.
Her hopes for a new life seem to be coming true.
Another Set Back:
One week after singing "Big Green Tractor," Preston suffers a short grand mal.
Then, in the backyard sunshine the Sunday before Halloween, Preston's eyelids flick up and down from seizures. A drop of drool forms on his lips.
His grandmother, Milly, brings him inside with worry.
"He's really blinky," she tells Ana.
Preston's eyelid flutters pick up speed, jackhammering one after another, and soon Ana is struggling to lift him onto the couch. His legs dangle limply beneath him.
"Jesus Christ," she says, straining. "Stand up, Preston."
Moving quickly to the kitchen counter, Ana opens a medicine bag that has dinosaurs and her son's name on it. Her hand passes over two bottles of amber-colored marijuana oil and instead reaches for one of the six different pharmaceutical drugs also crowding the bag – a nasal spray called Versed that is used in emergencies to head off a grand mal.
"He's not going to like this," she says. "He knows it burns."
Preston's arms flail as Ana tries to steady his head.
"This is going to make you better," she pleads with him. "So you can play with your friends at the birthday party."
"Buhfday," he says between seizures.
Today is Preston's birthday party.
All around him, the house is decorated for a celebration. His little sister, Sydney, had been blowing up balloons and drawing jack-o-lantern faces on them with a marker. Ana had been placing candy eyeballs onto frosted cupcakes.
Fairy princesses and pirates and a Teenage Mutant Ninja Turtle are coming to his home bearing gifts. Like him, many of the kids in those costumes suffer from rare forms of epilepsy. They are the first friends Preston has ever had.
And now, the guests are only a half hour from arriving – and the rescue medicine isn't yet taking hold. Sydney watches her brother with concern. Ana, returning to the cupcakes, does too.
"Hey, Mr. Blinky," she calls over to him. "Please don't seize on me!"
Preston's Bike:
The rescue medicine works just in time to stave off another grand mal.
When Ana rolls out the electric blue bike with large training wheels as the big finale to Preston's birthday party, it feels somewhat like an artifact of her optimism. But she is undaunted.
"That's Preston's bike," Ana tells him, and a smile grows across his face.
On the street, Preston's grin stretches so wide it looks as though it might push his ears off his head. Sitting on the seat, he shuffles his feet along the ground to inch the bike forward. Sydney and the other kids from the neighborhood whiz by on their bikes, screaming in delight. Preston laughs in heaves. Up and down the one-block street he goes. Step by step. Scooting. Flying.
Ana tries to teach Preston how to ride the bike properly.
"Put your feet on the pedals," she tells him.
"No!" he insists.
"On the pedals," Ana says. "See, you can push yourself."
Preston keeps walking the bike forward.
"Let me show you," Ana says. "This is how you ride a bike."
More steps.
"I give up," she laughs. Her son can ride his bike his way.
A Cannabis Community:
They call themselves refugees.
The hundreds of families moving to Colorado to treat their children with medical marijuana arrive with no guarantees for a treatment that is not scientifically proven to work. But what they have is one another.
Bound by the semi-legality of the treatment they've chosen – legal under Colorado law but illegal under federal law – and the hope they've attached to it, Colorado's medical marijuana refugees have built new communities for themselves in their adopted state. They babysit for one another and go out to dinner together and protect one another's kids from the cold stares of strangers. They talk one another through days filled with seizures and hug when the seizures subside. Some even live together, to split the cost of housing.
One day, after Ana and Preston went to a brunch with families whose kids also suffer from Dravet syndrome – the rare form of epilepsy that afflicts Preston – another mom posted a photo on Facebook. It was of Preston and her daughter leaning into each other and grinning.
"This was their version of a hug," she wrote. "Thank you for all the support. This moment in time has been forever captured. Let this be a testament to how wonderful our children are."
Back home in North Carolina, Ana had been like many parents of children with rare diseases: She lived on a metaphoric desert island. It was years before she met another parent whose child shared the same disease. And, even then, there were no support groups, no play dates, no joint outings to the zoo.
Instead, there was Facebook, where she bonded with Dravet moms in ways that seemed impossible for her to do with the people she met in her everyday life. In Colorado, those moms now come to her house for dinner.
"We just kind of feel like we get each other," Ana said. "We connect on a level that other moms don't get."
This new community in Colorado has generally split into two groups, centered on the state's two largest providers of marijuana extracts rich in a compound called CBD that the kids take.
The most famous is the Realm of Caring. Its best-known patient – a little girl named Charlotte Figi, who is the namesake of the group's CBD product, Charlotte's Web – has been featured in two documentaries and dozens of news stories. Today, the Realm of Caring serves more than 350 patients in Colorado, with an affiliate group in California serving about 150.
"It's been an amazing support community," said Charlotte's mother, Paige. "These were parents who didn't leave the house."
Because the Realm of Caring is based in Colorado Springs, parents who move to the state – often inspired by news stories about Realm patients – frequently locate there. That is what Ana did when she arrived in Colorado in late June.
But, by this summer, the Realm's waiting list topped 10,000 names, forcing some families to seek other options. Many, including Ana, turned to Jason Cranford, a Boulder County man who owns several medical marijuana businesses but chooses to serve young patients out of his home.
Cranford's group is the Flowering Hope Foundation, and it has more than 120 patients. Its signature strain РHaleigh's Hope Рis named after Haleigh Cox, a Georgia girl who went three years without smiling at her mom or dad. On the emergency flight out to Colorado with her mom, Jan̩a, Haleigh stopped breathing three times. Soon, as Haleigh slowly improved, Jan̩a volunteered to schedule appointments for new patients at the Flowering Hope Foundation.
"This is bringing hope to so many families," Janéa said. "We feel like family."
Creating Hope:
The stainless steel machine that creates Preston's CBD oil is one of a kind. Medical marijuana providers use a variety of methods to extract CBD and other compounds from marijuana and turn them into a medicine. Preston's provider, Jason Cranford, custom-designed his extractor to suit his unique method, which is described here.
Parents from both organizations have led a political movement to push pro-CBD laws in state legislatures across the country. In addition to the 23 states with medical marijuana laws, there are now another 11 states that have legalized CBD in some form. In states such as Alabama and Utah, where conversations about liberalizing cannabis laws never previously received much attention, the families' stories broke through.
"The power that these parents have is unequaled," said Dr. Alan Shackelford, a Denver physician who has recommended medical marijuana for many kids coming to Colorado, "because a committed parent trying to help a child can move mountains."
But one thing parents can't do is guarantee whether medical marijuana will help their children. For some, CBD has been a godsend. For some, it has been a dead end.
Despite the positive signs, Milly still worries about which side Preston will fall on. She committed to staying in Colorado Springs for a couple of months after the move to help Ana settle. But the transition had been harder than either she or Ana expected, and when the seizures continued, Milly decided to stay longer. She rented a house near Ana's.
Sitting at her kitchen table during the stretch of days without a grand mal, Milly thinks about how difficult Preston's journey in Colorado has been and about how, even now, little seizures continue to shake his brain daily.
Is That Progress?
Her thoughts turn to the moment when she first heard about CBD – in the TV documentary where she saw a smiling Charlotte Figi riding a bicycle.
"Looking back on it," she said, "all we could see was hope and something that was helping these kids. And they were families just like us. That's what clicked it and made it believable."
She paused in her thoughts.
"I'm not saying it's not believable. I'm just saying things are not always – it's a story. It's a story. I don't know."
Another pause.
"I want it to be true."
Quiet.
"I want it to be true."
Preston's Birthday:
On his first morning as a teenager – Nov. 1, six days after his party – Preston shuffles out of the bedroom wearing fleece pajamas with dinosaurs on them.
Breakfast is his choice, so he chooses fried potatoes, slices of cheddar cheese and tortilla chips. Milly lights a vanilla-scented votive candle to sing happy birthday to him, and, on the third try, Preston huffs in and blows out the flame.
"How old are you?" Preston's speech therapist, Beth Clancy, asks him as she prepares for an early session.
Preston looks at her sheepishly.
"Preston," Milly coaxes, "we've been practicing this. How old are you?"
"Two?" he says.
"How. Old. Are. You?" Milly asks again.
There's a glimmer in his eyes.
"Thuh," he starts, "EEN!"
Thirteen.
The age of seventh grade – the age, for most kids, of algebra class and essay assignments on "The Call of the Wild" and first awkward school dances.
For Preston, speech therapy this morning begins with an iPad game to identify colors and animals.
"Preston, what says, 'Meow'?" Beth asks.
He doesn't answer.
Next comes Mr. Potato Head, where Preston puts the eyes where the nose should go, the nose where the mouth should go and the arms on backward. But Clancy is encouraged. Despite the mistakes, Preston is focusing on the tasks longer than he used to. He's listening to instructions, too.
"Yes, ma'am," he says when she asks him a question.
"There's progress happening," she tells Milly. "It's there."
But the grand mals are also there again, hitting almost every afternoon the week between his party and his birthday, causing Ana to run low on rescue medicine. Later in the day, she's watching Preston closely for blinky seizures when her phone rings. She puts it on speaker.
"Happy birthday, darling!" a voice bursts from the phone.
It's a former nurse of Preston's from North Carolina, calling to check on a patient who had long ago felt like a grandson to her.
"Are you having a good birthday?" she asks Preston.
"Talk to her," Ana urges him.
But Preston just smiles, and soon the conversation shifts.
"So," the nurse asks, "how's he doing?"
Ana adopts a measured tone.
"He's been doing OK," she says. "He's been having some seizures in the afternoon. But the mornings are good."
What If This Is Just Preston's Life?
For the past couple of months, when things were looking up, Ana would occasionally share an inspirational quote with friends online.
Oct. 6: "No matter how tired you are, no matter how scared and lost you feel, no matter the diagnosis, challenge or fear, no matter how hard things get and the struggles you and your child with special needs will face, you are working from a place of great love ... and that will always be enough."
Oct. 7: "Sometimes God's power is shown as much in preventing things as it is in making them happen."
Oct. 16: "Faith is about trusting God even when you don't understand his plan."
Then, after the recent setbacks, she posts one of the earliest pictures of Preston from his baby book.
"Today is Preston's birthday," she writes. "I am so proud of how far he has come, he is such an inspiration to everyone. He truly is the most amazing little boy ever!! We love you Preston♥♥♥"
A Mother's Hope:
Ana came to Colorado hoping to find something that would make her son better. But what she found made her love him the way he is even more. And maybe that was the point all along, she would say. That it might have been enough for her just to try. That she loves him enough to never give up on him.
As evening nears on Preston's 13th birthday, Ana reaches into the refrigerator and pulls out his afternoon dose of CBD. This time, it is not the familiar amber oil in a medicine dropper. It's a sage-green blob of chilled butter in a mason jar. Another Dravet mom made the infused butter at her home, using marijuana she purchased at a dispensary in Denver, and shared some with Ana.
"This is why I moved to Colorado, to have access to everything," Ana reasoned. "We're far from gaining seizure control. We haven't done any medicine weans."
Heating up the butter, Ana draws it into a syringe, then walks up the stairs to where Preston is playing.
"Let me see your belly," she tells Preston.
She attaches the syringe's tip to the feeding tube that doctors in Colorado had placed into Preston's stomach. "Boink," she says playfully when pushing the plunger. Preston totters off to continue playing, and Ana sets the syringe down on a dresser.
"Let's see what that does," she says.
In the next three weeks, Preston suffers some of the worst seizures yet in Colorado – fist-balled grand mals during which his clamped jaw is the only thing holding back his grunts from coming out as screams. Ana stops giving him CBD for a time, then starts again with a new formulation made from a different marijuana strain. She takes Preston for a doctor's visit and asks about the possibility of trying an experimental pharmaceutical drug.
And then the seizures dissipate, and Ana's optimism returns. She learns she has made it off the waiting list for Charlotte's Web. She's excited to give it a try.
She might never hear Preston say "I love you," but, on the day before Thanksgiving, she hears something almost as sweet.
She asks Preston if he's hungry.
"I," he starts.
Sensing something coming, she reaches for her cellphone to record a video.
"What do you want?" she asks.
"Cheese!" he says.
"Cheese what?"
"Cheese, please."
"No," Ana says. "I ..."
"I," Preston starts hesitantly. "I ... I. Want. Cheese!"
Ana is silent, shocked that her son just said a complete sentence. Preston smiles and rocks back and forth with giggles.
Five long seconds later, Ana gathers all of the emotions and hopes of their journey into one burst.
"Good job!"
News Moderator: Shandar @ 420 MAGAZINE ®
Source: Special presentations - The Denver Post
Author: John Ingold / Lindsay Pierce / Photo Joe Amon
Contact: Contact Us - The Denver Post
Website: CBD in Colorado: Seeking a marijuana miracle - The Denver Post
So, one morning in mid-October, Ana Watson cues up Jason Aldean's "Big Green Tractor" on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.
Preston starts singing.
Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
"BAM!" Ana writes on Facebook. "Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!"
Is This Finally It?
Four months after they arrived in Colorado – one of hundreds of desperate families moving here for medical marijuana for their children – the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister's two-wheel scooter without falling. He remembered to say "Please" and "Thank you."
It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
Her new friends in Colorado – parents who, like her, came to the state seeking hope through cannabis – cheered on her social media updates.
"AWESOME!!" one wrote beneath the video of Preston singing.
"Beautiful," another wrote. "So beautiful."
How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.
She also began giving him his traditional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
So optimistic is Ana that, as Preston's 13th birthday approaches, she makes a bold decision: It's time for her son to get his first real bicycle.
Her hopes for a new life seem to be coming true.
Another Set Back:
One week after singing "Big Green Tractor," Preston suffers a short grand mal.
Then, in the backyard sunshine the Sunday before Halloween, Preston's eyelids flick up and down from seizures. A drop of drool forms on his lips.
His grandmother, Milly, brings him inside with worry.
"He's really blinky," she tells Ana.
Preston's eyelid flutters pick up speed, jackhammering one after another, and soon Ana is struggling to lift him onto the couch. His legs dangle limply beneath him.
"Jesus Christ," she says, straining. "Stand up, Preston."
Moving quickly to the kitchen counter, Ana opens a medicine bag that has dinosaurs and her son's name on it. Her hand passes over two bottles of amber-colored marijuana oil and instead reaches for one of the six different pharmaceutical drugs also crowding the bag – a nasal spray called Versed that is used in emergencies to head off a grand mal.
"He's not going to like this," she says. "He knows it burns."
Preston's arms flail as Ana tries to steady his head.
"This is going to make you better," she pleads with him. "So you can play with your friends at the birthday party."
"Buhfday," he says between seizures.
Today is Preston's birthday party.
All around him, the house is decorated for a celebration. His little sister, Sydney, had been blowing up balloons and drawing jack-o-lantern faces on them with a marker. Ana had been placing candy eyeballs onto frosted cupcakes.
Fairy princesses and pirates and a Teenage Mutant Ninja Turtle are coming to his home bearing gifts. Like him, many of the kids in those costumes suffer from rare forms of epilepsy. They are the first friends Preston has ever had.
And now, the guests are only a half hour from arriving – and the rescue medicine isn't yet taking hold. Sydney watches her brother with concern. Ana, returning to the cupcakes, does too.
"Hey, Mr. Blinky," she calls over to him. "Please don't seize on me!"
Preston's Bike:
The rescue medicine works just in time to stave off another grand mal.
When Ana rolls out the electric blue bike with large training wheels as the big finale to Preston's birthday party, it feels somewhat like an artifact of her optimism. But she is undaunted.
"That's Preston's bike," Ana tells him, and a smile grows across his face.
On the street, Preston's grin stretches so wide it looks as though it might push his ears off his head. Sitting on the seat, he shuffles his feet along the ground to inch the bike forward. Sydney and the other kids from the neighborhood whiz by on their bikes, screaming in delight. Preston laughs in heaves. Up and down the one-block street he goes. Step by step. Scooting. Flying.
Ana tries to teach Preston how to ride the bike properly.
"Put your feet on the pedals," she tells him.
"No!" he insists.
"On the pedals," Ana says. "See, you can push yourself."
Preston keeps walking the bike forward.
"Let me show you," Ana says. "This is how you ride a bike."
More steps.
"I give up," she laughs. Her son can ride his bike his way.
A Cannabis Community:
They call themselves refugees.
The hundreds of families moving to Colorado to treat their children with medical marijuana arrive with no guarantees for a treatment that is not scientifically proven to work. But what they have is one another.
Bound by the semi-legality of the treatment they've chosen – legal under Colorado law but illegal under federal law – and the hope they've attached to it, Colorado's medical marijuana refugees have built new communities for themselves in their adopted state. They babysit for one another and go out to dinner together and protect one another's kids from the cold stares of strangers. They talk one another through days filled with seizures and hug when the seizures subside. Some even live together, to split the cost of housing.
One day, after Ana and Preston went to a brunch with families whose kids also suffer from Dravet syndrome – the rare form of epilepsy that afflicts Preston – another mom posted a photo on Facebook. It was of Preston and her daughter leaning into each other and grinning.
"This was their version of a hug," she wrote. "Thank you for all the support. This moment in time has been forever captured. Let this be a testament to how wonderful our children are."
Back home in North Carolina, Ana had been like many parents of children with rare diseases: She lived on a metaphoric desert island. It was years before she met another parent whose child shared the same disease. And, even then, there were no support groups, no play dates, no joint outings to the zoo.
Instead, there was Facebook, where she bonded with Dravet moms in ways that seemed impossible for her to do with the people she met in her everyday life. In Colorado, those moms now come to her house for dinner.
"We just kind of feel like we get each other," Ana said. "We connect on a level that other moms don't get."
This new community in Colorado has generally split into two groups, centered on the state's two largest providers of marijuana extracts rich in a compound called CBD that the kids take.
The most famous is the Realm of Caring. Its best-known patient – a little girl named Charlotte Figi, who is the namesake of the group's CBD product, Charlotte's Web – has been featured in two documentaries and dozens of news stories. Today, the Realm of Caring serves more than 350 patients in Colorado, with an affiliate group in California serving about 150.
"It's been an amazing support community," said Charlotte's mother, Paige. "These were parents who didn't leave the house."
Because the Realm of Caring is based in Colorado Springs, parents who move to the state – often inspired by news stories about Realm patients – frequently locate there. That is what Ana did when she arrived in Colorado in late June.
But, by this summer, the Realm's waiting list topped 10,000 names, forcing some families to seek other options. Many, including Ana, turned to Jason Cranford, a Boulder County man who owns several medical marijuana businesses but chooses to serve young patients out of his home.
Cranford's group is the Flowering Hope Foundation, and it has more than 120 patients. Its signature strain РHaleigh's Hope Рis named after Haleigh Cox, a Georgia girl who went three years without smiling at her mom or dad. On the emergency flight out to Colorado with her mom, Jan̩a, Haleigh stopped breathing three times. Soon, as Haleigh slowly improved, Jan̩a volunteered to schedule appointments for new patients at the Flowering Hope Foundation.
"This is bringing hope to so many families," Janéa said. "We feel like family."
Creating Hope:
The stainless steel machine that creates Preston's CBD oil is one of a kind. Medical marijuana providers use a variety of methods to extract CBD and other compounds from marijuana and turn them into a medicine. Preston's provider, Jason Cranford, custom-designed his extractor to suit his unique method, which is described here.
Parents from both organizations have led a political movement to push pro-CBD laws in state legislatures across the country. In addition to the 23 states with medical marijuana laws, there are now another 11 states that have legalized CBD in some form. In states such as Alabama and Utah, where conversations about liberalizing cannabis laws never previously received much attention, the families' stories broke through.
"The power that these parents have is unequaled," said Dr. Alan Shackelford, a Denver physician who has recommended medical marijuana for many kids coming to Colorado, "because a committed parent trying to help a child can move mountains."
But one thing parents can't do is guarantee whether medical marijuana will help their children. For some, CBD has been a godsend. For some, it has been a dead end.
Despite the positive signs, Milly still worries about which side Preston will fall on. She committed to staying in Colorado Springs for a couple of months after the move to help Ana settle. But the transition had been harder than either she or Ana expected, and when the seizures continued, Milly decided to stay longer. She rented a house near Ana's.
Sitting at her kitchen table during the stretch of days without a grand mal, Milly thinks about how difficult Preston's journey in Colorado has been and about how, even now, little seizures continue to shake his brain daily.
Is That Progress?
Her thoughts turn to the moment when she first heard about CBD – in the TV documentary where she saw a smiling Charlotte Figi riding a bicycle.
"Looking back on it," she said, "all we could see was hope and something that was helping these kids. And they were families just like us. That's what clicked it and made it believable."
She paused in her thoughts.
"I'm not saying it's not believable. I'm just saying things are not always – it's a story. It's a story. I don't know."
Another pause.
"I want it to be true."
Quiet.
"I want it to be true."
Preston's Birthday:
On his first morning as a teenager – Nov. 1, six days after his party – Preston shuffles out of the bedroom wearing fleece pajamas with dinosaurs on them.
Breakfast is his choice, so he chooses fried potatoes, slices of cheddar cheese and tortilla chips. Milly lights a vanilla-scented votive candle to sing happy birthday to him, and, on the third try, Preston huffs in and blows out the flame.
"How old are you?" Preston's speech therapist, Beth Clancy, asks him as she prepares for an early session.
Preston looks at her sheepishly.
"Preston," Milly coaxes, "we've been practicing this. How old are you?"
"Two?" he says.
"How. Old. Are. You?" Milly asks again.
There's a glimmer in his eyes.
"Thuh," he starts, "EEN!"
Thirteen.
The age of seventh grade – the age, for most kids, of algebra class and essay assignments on "The Call of the Wild" and first awkward school dances.
For Preston, speech therapy this morning begins with an iPad game to identify colors and animals.
"Preston, what says, 'Meow'?" Beth asks.
He doesn't answer.
Next comes Mr. Potato Head, where Preston puts the eyes where the nose should go, the nose where the mouth should go and the arms on backward. But Clancy is encouraged. Despite the mistakes, Preston is focusing on the tasks longer than he used to. He's listening to instructions, too.
"Yes, ma'am," he says when she asks him a question.
"There's progress happening," she tells Milly. "It's there."
But the grand mals are also there again, hitting almost every afternoon the week between his party and his birthday, causing Ana to run low on rescue medicine. Later in the day, she's watching Preston closely for blinky seizures when her phone rings. She puts it on speaker.
"Happy birthday, darling!" a voice bursts from the phone.
It's a former nurse of Preston's from North Carolina, calling to check on a patient who had long ago felt like a grandson to her.
"Are you having a good birthday?" she asks Preston.
"Talk to her," Ana urges him.
But Preston just smiles, and soon the conversation shifts.
"So," the nurse asks, "how's he doing?"
Ana adopts a measured tone.
"He's been doing OK," she says. "He's been having some seizures in the afternoon. But the mornings are good."
What If This Is Just Preston's Life?
For the past couple of months, when things were looking up, Ana would occasionally share an inspirational quote with friends online.
Oct. 6: "No matter how tired you are, no matter how scared and lost you feel, no matter the diagnosis, challenge or fear, no matter how hard things get and the struggles you and your child with special needs will face, you are working from a place of great love ... and that will always be enough."
Oct. 7: "Sometimes God's power is shown as much in preventing things as it is in making them happen."
Oct. 16: "Faith is about trusting God even when you don't understand his plan."
Then, after the recent setbacks, she posts one of the earliest pictures of Preston from his baby book.
"Today is Preston's birthday," she writes. "I am so proud of how far he has come, he is such an inspiration to everyone. He truly is the most amazing little boy ever!! We love you Preston♥♥♥"
A Mother's Hope:
Ana came to Colorado hoping to find something that would make her son better. But what she found made her love him the way he is even more. And maybe that was the point all along, she would say. That it might have been enough for her just to try. That she loves him enough to never give up on him.
As evening nears on Preston's 13th birthday, Ana reaches into the refrigerator and pulls out his afternoon dose of CBD. This time, it is not the familiar amber oil in a medicine dropper. It's a sage-green blob of chilled butter in a mason jar. Another Dravet mom made the infused butter at her home, using marijuana she purchased at a dispensary in Denver, and shared some with Ana.
"This is why I moved to Colorado, to have access to everything," Ana reasoned. "We're far from gaining seizure control. We haven't done any medicine weans."
Heating up the butter, Ana draws it into a syringe, then walks up the stairs to where Preston is playing.
"Let me see your belly," she tells Preston.
She attaches the syringe's tip to the feeding tube that doctors in Colorado had placed into Preston's stomach. "Boink," she says playfully when pushing the plunger. Preston totters off to continue playing, and Ana sets the syringe down on a dresser.
"Let's see what that does," she says.
In the next three weeks, Preston suffers some of the worst seizures yet in Colorado – fist-balled grand mals during which his clamped jaw is the only thing holding back his grunts from coming out as screams. Ana stops giving him CBD for a time, then starts again with a new formulation made from a different marijuana strain. She takes Preston for a doctor's visit and asks about the possibility of trying an experimental pharmaceutical drug.
And then the seizures dissipate, and Ana's optimism returns. She learns she has made it off the waiting list for Charlotte's Web. She's excited to give it a try.
She might never hear Preston say "I love you," but, on the day before Thanksgiving, she hears something almost as sweet.
She asks Preston if he's hungry.
"I," he starts.
Sensing something coming, she reaches for her cellphone to record a video.
"What do you want?" she asks.
"Cheese!" he says.
"Cheese what?"
"Cheese, please."
"No," Ana says. "I ..."
"I," Preston starts hesitantly. "I ... I. Want. Cheese!"
Ana is silent, shocked that her son just said a complete sentence. Preston smiles and rocks back and forth with giggles.
Five long seconds later, Ana gathers all of the emotions and hopes of their journey into one burst.
"Good job!"
News Moderator: Shandar @ 420 MAGAZINE ®
Source: Special presentations - The Denver Post
Author: John Ingold / Lindsay Pierce / Photo Joe Amon
Contact: Contact Us - The Denver Post
Website: CBD in Colorado: Seeking a marijuana miracle - The Denver Post