This here is an excerpt from a book you might know, D. Seidman's HOW. I'm including this piece here to inspire you my team: when I read about Krazy George Henderson just now and how he 'invented' the Wave, I couldn't help but think of how excellent a symbol this story is for Captain Enzo and the Regulars' endeavor. Seeing how the Wave works I'm positive that the 10mountains10years project is doomed to success!
(You can find the complete Prologue - which is where these passages come from - here.)
"The Wave is an extraordinary act. All those people, spread out over a vast stadium, with limited ability to connect or communicate, somehow come together in a giant cooperative act inspired by a common goal: to help the home team win. It defies language and culture, occurring with regularity throughout the world at Tower of Babel events as diverse as the Olympics and international soccer games[...] It transverses gender, income, and societal status. It is a pure expression of collective passion released.
What does it take to start a Wave?
If you consider the Wave as a process of human endeavor, you realize immediately that anyone can start one—an enthusiastic soccer mom, four drunken guys with jellyroll bellies and their bare chests painted Oakland green, or eight adolescents who idolize the team's star player. You don't have to be the owner of the stadium, the richest or most powerful person there, or even a paid professional like Krazy George. No one takes out their business card and says, "My title is the biggest; let the Wave start with me." Anyone can start a Wave; it is a truly democratic act.
So, how do you do it?
First, you need people's attention. Starting a Wave requires an act of leadership, so you must be willing to stand up and lead. You have to stand up, communicate your idea, and inspire others to help you achieve it. But how? Krazy George uses his drum, but the security guard at the metal detectors made you leave yours in the car. You could, perhaps, turn to the guy next to you and say, "Hey, here's 20 bucks—let's stand up." He might go along, but really, unless you are Bill Gates you will probably run out of money before you get all 60,000 fans to buy into your plan[...]
To create a great and powerful Wave, one that can make a difference to your team, you need enthusiastic participation[...]
Clearly, how you communicate your vision—how you connect with those around you—directly affects the outcome. The essence of a Wave, what makes it such a forceful expression of human desire, is that it is powered by a common passion to help the home team win. That value lives larger than any individual's actions and unites all the fans in the stadium. No one followed Krazy George's idea because they thought it was about George; a Wave is leadership, but the most important thing about a Wave is that you forget where it started—Section 32? 64? 132? The fans followed because he got everybody enlisted, and when you get everybody enlisted, it doesn't matter where your Wave starts. It just goes.
And no one followed Krazy George's idea because people booed (that was just a good-natured way of getting attention in a big stadium). They followed because they liked what he stood for and the way he banged his drum for it. To start one, then, you need to reach out to those around you, to share your vision with them, to enlist them in a common purpose. You must lead this Wave not by wielding formal authority, punitive power, or the threat of a small thermonuclear device under the stands, but with a touch of charisma. To get them to join you, you must be earnest and transparent, hold nothing back, and earn their trust. "Hey!" you might yell, charged with passion and commitment, filled with the unbridled emotion that you want to uncork in others. "I've got this idea! If we all stand up, wave our arms, and yell, I think it might help us win!" Who doesn't want to win?
I like the Wave as metaphor because it is about what a diverse group of people can accomplish when united by a common vision. It illustrates the power that moves through a group of people when they perform at their best, their most unbridled and passionate."
Hugs to all,
TR
Thursday, July 24, 2008
Thank You.......the journey continues
Thank You.......the journey continues
It has been almost three weeks since I returned From Oregon with my team "The Regulars". I decided to lay low at home for awhile to absorb the experience I had just come back from. I have not trained, walked, done karate, or even diet. Wow, a little odd for me but it felt good doing this. When I posted my Blog "When the Mountain talks to You" I was totally overwhelmed by the responses from everybody, the messages sent via Myspace, email. I still sit in awe at the impact it has made on my life and how it has changed me. How very grateful I am to have all of you in my life supporting me and encouraging me. How for the split second I was disappointed in myself I was reassured there was nothing to be disappointed at. I know that, but human nature sometimes rears its ugly head and makes you feel bad.
This is only one phase of the 10mountains 10years project. It is an ongoing project and one that everyone can get involved in. Climbing mountains may not be for everybody but the statement it is making is. The awareness and the funds that will be drawn in from our documentary is monumental. The uniqueness of this project is that there is no time limit. It is ongoing. The web pages to donate never go away. The chance to become part of a Street Team is always readily available. The possibilities to help out are there.
Go to our webpage and donate. Go to Enzo's page and get to know him and what this project is all about. Repost to get others involved. Every one counts in our search for the cures. For every person that donates, that is one step closer to aide in the research. Become involed, become a part of.
Our web pages are as follows:
http://www.theregulars.org TO DONATE AND BECOME PART OF THE FILM
http://www.myspace.com/10mountains10years TEAM CAPTAIN ENZO SIMONE
http://www.10mountains10years.blogspot.com GET TO KNOW OUR TEAM AND WHAT THEY ARE UP TO
http://www.cafepress.com/theregulars TO PURCHASE OUR TSHIRTS, HATS...ETC
As one journey ends another one begins.........I will go with them again. I will continue this fight to end these diseases. Thank you all from the bottom of my heart for your beautiful comments, your support, your friendships and your own efforts in making a difference.
Another One Down
World Up,
Eileen aka Strong Feather
It has been almost three weeks since I returned From Oregon with my team "The Regulars". I decided to lay low at home for awhile to absorb the experience I had just come back from. I have not trained, walked, done karate, or even diet. Wow, a little odd for me but it felt good doing this. When I posted my Blog "When the Mountain talks to You" I was totally overwhelmed by the responses from everybody, the messages sent via Myspace, email. I still sit in awe at the impact it has made on my life and how it has changed me. How very grateful I am to have all of you in my life supporting me and encouraging me. How for the split second I was disappointed in myself I was reassured there was nothing to be disappointed at. I know that, but human nature sometimes rears its ugly head and makes you feel bad.
This is only one phase of the 10mountains 10years project. It is an ongoing project and one that everyone can get involved in. Climbing mountains may not be for everybody but the statement it is making is. The awareness and the funds that will be drawn in from our documentary is monumental. The uniqueness of this project is that there is no time limit. It is ongoing. The web pages to donate never go away. The chance to become part of a Street Team is always readily available. The possibilities to help out are there.
Go to our webpage and donate. Go to Enzo's page and get to know him and what this project is all about. Repost to get others involved. Every one counts in our search for the cures. For every person that donates, that is one step closer to aide in the research. Become involed, become a part of.
Our web pages are as follows:
http://www.theregulars.org TO DONATE AND BECOME PART OF THE FILM
http://www.myspace.com/10mountains10years TEAM CAPTAIN ENZO SIMONE
http://www.10mountains10years.blogspot.com GET TO KNOW OUR TEAM AND WHAT THEY ARE UP TO
http://www.cafepress.com/theregulars TO PURCHASE OUR TSHIRTS, HATS...ETC
As one journey ends another one begins.........I will go with them again. I will continue this fight to end these diseases. Thank you all from the bottom of my heart for your beautiful comments, your support, your friendships and your own efforts in making a difference.
Another One Down
World Up,
Eileen aka Strong Feather
Thursday, July 17, 2008
beautiful baby boy has Alzheimer's
http://images.google.com/imgres?imgurl=http://img.dailymail.co.uk/i/pix/2007/11_03/jodiejoshDM2311_468x381.jpg&imgrefurl=http://www.dailymail.co.uk/femail/article-496098/My-beautiful-baby-boy-Alzheimers.html&h=381&w=468&sz=41&hl=en&start=45&um=1&tbnid=WJJRnqGN6rpDOM:&tbnh=104&tbnw=128&prev=/images%3Fq%3DWHO%2527S%2BMOTHER%2BHAS%2BALZHEIMER%2527S%26start%3D40%26ndsp%3D20%26um%3D1%26hl%3Den%26safe%3Doff%26sa%3DN
My beautiful baby boy has Alzheimer's
By AMANDA CABLE
Last updated at 23:45 24 November 2007
Last week, Joshua Cullip said "Mummy" for the first time. It was a breathtaking moment - and his mother's face lights up at the memory.
She says: "He was sitting in the high chair and clearly wanted more food. I was taking my time, and he started banging his plate - then he suddenly shouted 'Mummy' really loudly.
"It was as if someone had reached in and grabbed hold of my heart. It just physically lurched, and I still haven't got over the thrill of hearing him say my name."
Bitter blow: Joshua with his mother Jodie who is facing up to a difficult future
With that, as if on cue, Joshua says "Mama" again, and explodes into peals of laughter.
Like every first-time mother, Jodie greets each milestone with undisguised joy.
But each new achievement, each cause of celebration, is as agonising as it is gleeful. Because this sweet blonde 13-month-old baby with beseeching blue eyes and a ready smile is suffering from Alzheimer's.
Yes you did hear correctly - Alzheimer's. At some point before his fifth birthday dementia caused by the genetic disease Niemann-Pick C will set in, and this small boy will gradually forget every word he has learned.
It is perhaps one of the cruellest tricks of nature that within a couple of years, the child who now calls so happily for his Mummy will be too senile even to know who she is.
Jodie says: "It's as if everything Joshua says and does will slowly be taken away from us.
"He looks at me with such love, I can't imagine what it will be like for him not even to know me. To look at me in real confusion, with a stranger's eyes.
"He makes me so proud every day. He's just learned to do the rhyme Round And Round The Garden with his chubby little finger going around his palm, and he's so pleased with himself.
"But even then, I think: 'He won't remember this rhyme one day.' It's just another fresh pain."
At the age of 21, Jodie is an extraordinary young woman who remains incredibly calm and composed. When Joshua gleefully puts his plastic toys down the loo and empties out the shampoo, she remonstrates with him, but secretly delights in his mischief.
She says: "He's a little monster. I love to say that because it is just a little boy who gets into mischief. I just want him to stay a normal little boy for as long as possible."
Jodie is currently living apart from Joshua's father Callum, also 21. The stress, she admits, has been hard for the childhood sweethearts who have been together for five years.
She never planned to become a mother so young, but now, despite her own ambitions, she is devoting herself to caring for Joshua.
The news that she was pregnant came as a complete shock. Jodie says: "I planned to wait for a few years before settling down and having a baby.
"I was working in a children's shop and helping to run children's parties when I went to the local family planning clinic for my regular contraceptive injections.
"They do a pregnancy test as a matter of course, but this time the lady's face changed. She said: 'I wasn't expecting this - you are pregnant.' I was utterly stunned.
"I went straight to my niece's birthday party, and sat watching all the little children playing. I couldn't believe I was pregnant. Callum was shocked when I told him but we both decided we had always wanted a family.
"We were just starting earlier than we had planned."
The devoted young couple started to prepare for their baby - decorating their immaculate two-bedroom home in Milton Keynes, Buckinghamshire. But the pregnancy was difficult.
At six months, Jodie went into premature labour, which doctors were able to stop with drugs. During a scan at 33 weeks, Jodie discovered she was expecting a boy.
She says: "I had felt so sure the baby was going to be a boy, and I was thrilled. I knew immediately that I wanted to call him Joshua, and Callum chose his middle name, John.
"I had such wonderful plans for him before he was even born. I used to daydream, and wonder what he would be when he grew up."
At 35 weeks, Jodie's waters broke suddenly and she was rushed into theatre for an emergency Caesarean while her agonised partner waited outside.
"Joshua weighed 5lb 7oz," she says, "but I only saw him for a few seconds, because he was freezing cold and had problems breathing and they needed to get him to the special care unit.
"I could hardly see him under the blankets, and when they took him away it was awful, as if a piece of me had been amputated."
Within hours, Jodie's own condition had deteriorated. Kidney complications during her pregnancy returned, and she was treated in a separate unit, unable to see her child.
The following morning, a paediatrician arrived with the news that Joshua was jaundiced and unable to take milk. He had to be transferred to a specialist baby unit in Oxford, 40 miles away.
"The next two weeks were a total misery," says Jodie. "I was put in my own room, but I could hear all the other babies and their mothers on the ward.
"Callum would go and visit Joshua at the baby unit, then come back and tell me about him, and I felt so jealous. I started to wonder if I would ever bond with this baby I had never seen.
"Finally, after two weeks I discharged myself, I had to see him so badly. I could hardly walk, but I insisted Callum drove me to be with our son.
"I staggered into the special care unit and there he was, the smallest but most perfect baby I had ever seen.
"I just needed to hold him in my arms. Incredibly, almost as soon as I did, Joshua started to thrive. Within hours, he started to feed. His bowel movements became normal and his temperature settled.
"It was as if he knew Mummy had come for him, as if I had somehow willed him to get better."
After two weeks, Joshua was declared well enough to go home. Jodie says: "The doctors said they had to keep an eye on his jaundice levels, but I honestly didn't think jaundice was dangerous.
"I was just thrilled he was coming home and we were going to start our new life as a little family at last."
But after a few weeks, fresh blood tests revealed that Joshua's levels of bilirubin - the pigment which causes jaundice - were high, and he had to be referred to a liver specialist in London.
"As soon as I heard the words 'liver specialist', I started to panic," says Jodie, "but I told myself that the doctors probably just wanted to be safe.
"Joshua had slightly yellow eyes, but he seemed so healthy. He smiled at exactly the right time, and started gurgling and trying to talk to me with his own baby language.
"I couldn't believe that a baby who seemed so bright and so perfect could have something seriously wrong with him."
Baby book: Like other first-time mothers, Jodie meticulously records Joshua's progress
The family were sent to London's famous King's College Hospital, but further tests showed no liver disease. Clearly baffled, doctors asked Jodie and Callum if there was any family history of serious illness or infant death.
Jodie says: "My mother reminded me that my cousin's daughter Maddie had died at three months' old the previous year. We weren't close, I had never met the poor baby, but Mum decided to check the details.
"When she rang back, she said the baby had suffered from a very rare genetic condition called Niemann-Pick C - a form of dementia known as children's Alzheimer's.
"I told the specialist, and she said: 'It's very unlikely, because it isn't hereditary and I've never known two babies from one family suffer from this condition. But it is worth testing Joshua so that we can rule it out.'
"The tests themselves were horrific. Joshua had to have a bone marrow biopsy, a liver biopsy and a skin biopsy at the same time. I wasn't allowed to be with him, I just stood outside in the hallway, listening to his screams and crying my eyes out."
A week later, Jodie received a call from the specialist. She says: "The doctor just said that the tests had come back, and unfortunately they did show that Joshua probably had Neimann-Pick C. The final result, from the skin biopsy, would confirm if this was the case.
"I put the phone down and went straight onto the internet because I didn't have a clue what this condition was. I was absolutely devastated with what I saw.
"I learned that Niemann-Pick C is caused when both parents carry a faulty gene. It affects just one in 150,000 babies and causes harmful build-ups of fatty substances known as lipids in the liver, spleen, bone marrow and brain.
"Callum, myself and our parents all read up about this awful condition but somehow I managed to convince myself that the final skin biopsy would show that Joshua was clear.
"He was a healthy, happy, five-month-old baby who played and gurgled at my feet. I couldn't believe such a beautiful boy had such an evil disease."
Jodie and Callum are sheltered by their close-knit families, and when the young couple travelled to London for the final verdict in March this year, Callum's parents came with them for support.
"We arrived at Evelina Children's Hospital and we all walked in to meet the specialist," says Jodie. "I put Joshua onto the floor and I watched him roll around, playing. Then the specialist confirmed that Joshua had Neimann-Pick C.
"I remember him saying that children like Joshua, who had an enlarged liver and spleen usually pass away by the age of five from liver failure.
"There are some children who survive into early adulthood, but we should prepare ourselves for the worst."
The news was greeted with utter silence. Jodie says: "Nobody could talk. To be honest, I was devoid of any emotion. I didn't even cry, it just didn't feel real.
"I picked Joshua up and we left the hospital and went on a boat trip. It was totally surreal, because Joshua was laughing at the other boats and pointing, and none of us even mentioned the doctor or this awful prognosis.
"I couldn't even think about it. I just wanted to give Joshua a nice day out. It didn't seem fair to be talking about his death when he was having such a lovely time watching the boats.
"Even when I got home that night, I didn't cry. Reality didn't actually sink in for another few weeks. Then one day, I was reading an article in a local newspaper, and it talked about another little child who has Niemann-Pick C.
"It said the condition was known as children's Alzheimer's, because it causes progressive senile dementia, like the type seen in elderly people.
"It was as if my whole world came crashing down, because with the word Alzheimer's, the full implication of Joshua's condition, and his future, became clear.
"I had never known anyone with Alzheimer's but before my pregnancy I had happened to watch a storyline on Coronation Street which showed one of the main characters, Mike Baldwin, suffering from the condition.
"The irony was that I never usually watch soaps, but the sight of this character who kept forgetting things had been so disturbing that I had followed the whole story, watching the gradual disintegration of his mind.
"Now, the image of that shambling and confused man haunted me. Because I realised this is what would happen to Joshua.
"Everything that he learned would be forgotten. Everything he discovered about the world around him would be lost. Every toy that he loved would one day be discarded.
"The thought that eventually he wouldn't even recognise his beloved Grandad was unbearable."
With this, Jodie pauses and takes a painful gulp. "And then I remember that one day he won't even know me."
Joshua's condition is untreatable. A liver transplant is not an option because fatty deposits would attack any new organ. Jodie's beloved baby son is effectively a ticking time bomb.
At some point he will become clumsy, and start to tumble and fall. He will begin to forget where he has put his toys. Words will start to fail him, and he will have difficulty remembering the faces of those who love him.
Finally, he will lose the power of speech and the power to swallow. Jodie fights back tears as she says: "He loves his food so much. Whatever I cook for him, he really enjoys and that is what hurts me the most. The thought that he won't actually be able to swallow or taste the food he loves."
At the age of 21, where the only choices many girls make are where to go out on a Saturday night, Jodie is facing some of the most painful decisions any mother can make, and she does so with a maturity which belies her years.
"I don't want Joshua's life to be prolonged by painful treatment," she says. "I want him to remain happy and comfortable for as long as possible.
"It is hard to think about his death when he is so happy and doing so well. But I force myself to think about the future, for his sake. I want to plan it, so I don't fall apart when it happens.
"I've decided that when he has gone, I want to find a new career, a new chance to make the best of my life.
"I want Joshua to be proud of me, and I want to be the best mum he could ever hope for - even if he is in Heaven.
"I left school at 17 with just five GCSEs. Perhaps I'll go to college and study, maybe find a career which helps sick children. I just know I can't afford to go downhill and waste this precious chance.
"In the meantime, I just delight in everything Joshua does. If he's naughty, I pretend I'm cross but in truth I'm just thrilled that he has this incredible cheeky spirit.
"I video him all the time and then I watch the tapes back so I can savour every moment and enjoy every new little thing he does, time and time again."
Jodie has a baby book, where like many other first-time mothers, she meticulously records Joshua's progress.
There, her neat handwriting recalls, how he first crawled at ten months, pulled himself up to stand at nearly a year.
And last week, she recalls shakily, he said "Mummy" for the very first time. Up until then, he called her Jojo.
She smiles with pride and says: "His little voice is the sweetest sound I have ever heard."
And when it is gone, when Joshua can no longer say Mummy or plant wet kisses on her cheek, it is a memory she will hang on to for ever.
My beautiful baby boy has Alzheimer's
By AMANDA CABLE
Last updated at 23:45 24 November 2007
Last week, Joshua Cullip said "Mummy" for the first time. It was a breathtaking moment - and his mother's face lights up at the memory.
She says: "He was sitting in the high chair and clearly wanted more food. I was taking my time, and he started banging his plate - then he suddenly shouted 'Mummy' really loudly.
"It was as if someone had reached in and grabbed hold of my heart. It just physically lurched, and I still haven't got over the thrill of hearing him say my name."
Bitter blow: Joshua with his mother Jodie who is facing up to a difficult future
With that, as if on cue, Joshua says "Mama" again, and explodes into peals of laughter.
Like every first-time mother, Jodie greets each milestone with undisguised joy.
But each new achievement, each cause of celebration, is as agonising as it is gleeful. Because this sweet blonde 13-month-old baby with beseeching blue eyes and a ready smile is suffering from Alzheimer's.
Yes you did hear correctly - Alzheimer's. At some point before his fifth birthday dementia caused by the genetic disease Niemann-Pick C will set in, and this small boy will gradually forget every word he has learned.
It is perhaps one of the cruellest tricks of nature that within a couple of years, the child who now calls so happily for his Mummy will be too senile even to know who she is.
Jodie says: "It's as if everything Joshua says and does will slowly be taken away from us.
"He looks at me with such love, I can't imagine what it will be like for him not even to know me. To look at me in real confusion, with a stranger's eyes.
"He makes me so proud every day. He's just learned to do the rhyme Round And Round The Garden with his chubby little finger going around his palm, and he's so pleased with himself.
"But even then, I think: 'He won't remember this rhyme one day.' It's just another fresh pain."
At the age of 21, Jodie is an extraordinary young woman who remains incredibly calm and composed. When Joshua gleefully puts his plastic toys down the loo and empties out the shampoo, she remonstrates with him, but secretly delights in his mischief.
She says: "He's a little monster. I love to say that because it is just a little boy who gets into mischief. I just want him to stay a normal little boy for as long as possible."
Jodie is currently living apart from Joshua's father Callum, also 21. The stress, she admits, has been hard for the childhood sweethearts who have been together for five years.
She never planned to become a mother so young, but now, despite her own ambitions, she is devoting herself to caring for Joshua.
The news that she was pregnant came as a complete shock. Jodie says: "I planned to wait for a few years before settling down and having a baby.
"I was working in a children's shop and helping to run children's parties when I went to the local family planning clinic for my regular contraceptive injections.
"They do a pregnancy test as a matter of course, but this time the lady's face changed. She said: 'I wasn't expecting this - you are pregnant.' I was utterly stunned.
"I went straight to my niece's birthday party, and sat watching all the little children playing. I couldn't believe I was pregnant. Callum was shocked when I told him but we both decided we had always wanted a family.
"We were just starting earlier than we had planned."
The devoted young couple started to prepare for their baby - decorating their immaculate two-bedroom home in Milton Keynes, Buckinghamshire. But the pregnancy was difficult.
At six months, Jodie went into premature labour, which doctors were able to stop with drugs. During a scan at 33 weeks, Jodie discovered she was expecting a boy.
She says: "I had felt so sure the baby was going to be a boy, and I was thrilled. I knew immediately that I wanted to call him Joshua, and Callum chose his middle name, John.
"I had such wonderful plans for him before he was even born. I used to daydream, and wonder what he would be when he grew up."
At 35 weeks, Jodie's waters broke suddenly and she was rushed into theatre for an emergency Caesarean while her agonised partner waited outside.
"Joshua weighed 5lb 7oz," she says, "but I only saw him for a few seconds, because he was freezing cold and had problems breathing and they needed to get him to the special care unit.
"I could hardly see him under the blankets, and when they took him away it was awful, as if a piece of me had been amputated."
Within hours, Jodie's own condition had deteriorated. Kidney complications during her pregnancy returned, and she was treated in a separate unit, unable to see her child.
The following morning, a paediatrician arrived with the news that Joshua was jaundiced and unable to take milk. He had to be transferred to a specialist baby unit in Oxford, 40 miles away.
"The next two weeks were a total misery," says Jodie. "I was put in my own room, but I could hear all the other babies and their mothers on the ward.
"Callum would go and visit Joshua at the baby unit, then come back and tell me about him, and I felt so jealous. I started to wonder if I would ever bond with this baby I had never seen.
"Finally, after two weeks I discharged myself, I had to see him so badly. I could hardly walk, but I insisted Callum drove me to be with our son.
"I staggered into the special care unit and there he was, the smallest but most perfect baby I had ever seen.
"I just needed to hold him in my arms. Incredibly, almost as soon as I did, Joshua started to thrive. Within hours, he started to feed. His bowel movements became normal and his temperature settled.
"It was as if he knew Mummy had come for him, as if I had somehow willed him to get better."
After two weeks, Joshua was declared well enough to go home. Jodie says: "The doctors said they had to keep an eye on his jaundice levels, but I honestly didn't think jaundice was dangerous.
"I was just thrilled he was coming home and we were going to start our new life as a little family at last."
But after a few weeks, fresh blood tests revealed that Joshua's levels of bilirubin - the pigment which causes jaundice - were high, and he had to be referred to a liver specialist in London.
"As soon as I heard the words 'liver specialist', I started to panic," says Jodie, "but I told myself that the doctors probably just wanted to be safe.
"Joshua had slightly yellow eyes, but he seemed so healthy. He smiled at exactly the right time, and started gurgling and trying to talk to me with his own baby language.
"I couldn't believe that a baby who seemed so bright and so perfect could have something seriously wrong with him."
Baby book: Like other first-time mothers, Jodie meticulously records Joshua's progress
The family were sent to London's famous King's College Hospital, but further tests showed no liver disease. Clearly baffled, doctors asked Jodie and Callum if there was any family history of serious illness or infant death.
Jodie says: "My mother reminded me that my cousin's daughter Maddie had died at three months' old the previous year. We weren't close, I had never met the poor baby, but Mum decided to check the details.
"When she rang back, she said the baby had suffered from a very rare genetic condition called Niemann-Pick C - a form of dementia known as children's Alzheimer's.
"I told the specialist, and she said: 'It's very unlikely, because it isn't hereditary and I've never known two babies from one family suffer from this condition. But it is worth testing Joshua so that we can rule it out.'
"The tests themselves were horrific. Joshua had to have a bone marrow biopsy, a liver biopsy and a skin biopsy at the same time. I wasn't allowed to be with him, I just stood outside in the hallway, listening to his screams and crying my eyes out."
A week later, Jodie received a call from the specialist. She says: "The doctor just said that the tests had come back, and unfortunately they did show that Joshua probably had Neimann-Pick C. The final result, from the skin biopsy, would confirm if this was the case.
"I put the phone down and went straight onto the internet because I didn't have a clue what this condition was. I was absolutely devastated with what I saw.
"I learned that Niemann-Pick C is caused when both parents carry a faulty gene. It affects just one in 150,000 babies and causes harmful build-ups of fatty substances known as lipids in the liver, spleen, bone marrow and brain.
"Callum, myself and our parents all read up about this awful condition but somehow I managed to convince myself that the final skin biopsy would show that Joshua was clear.
"He was a healthy, happy, five-month-old baby who played and gurgled at my feet. I couldn't believe such a beautiful boy had such an evil disease."
Jodie and Callum are sheltered by their close-knit families, and when the young couple travelled to London for the final verdict in March this year, Callum's parents came with them for support.
"We arrived at Evelina Children's Hospital and we all walked in to meet the specialist," says Jodie. "I put Joshua onto the floor and I watched him roll around, playing. Then the specialist confirmed that Joshua had Neimann-Pick C.
"I remember him saying that children like Joshua, who had an enlarged liver and spleen usually pass away by the age of five from liver failure.
"There are some children who survive into early adulthood, but we should prepare ourselves for the worst."
The news was greeted with utter silence. Jodie says: "Nobody could talk. To be honest, I was devoid of any emotion. I didn't even cry, it just didn't feel real.
"I picked Joshua up and we left the hospital and went on a boat trip. It was totally surreal, because Joshua was laughing at the other boats and pointing, and none of us even mentioned the doctor or this awful prognosis.
"I couldn't even think about it. I just wanted to give Joshua a nice day out. It didn't seem fair to be talking about his death when he was having such a lovely time watching the boats.
"Even when I got home that night, I didn't cry. Reality didn't actually sink in for another few weeks. Then one day, I was reading an article in a local newspaper, and it talked about another little child who has Niemann-Pick C.
"It said the condition was known as children's Alzheimer's, because it causes progressive senile dementia, like the type seen in elderly people.
"It was as if my whole world came crashing down, because with the word Alzheimer's, the full implication of Joshua's condition, and his future, became clear.
"I had never known anyone with Alzheimer's but before my pregnancy I had happened to watch a storyline on Coronation Street which showed one of the main characters, Mike Baldwin, suffering from the condition.
"The irony was that I never usually watch soaps, but the sight of this character who kept forgetting things had been so disturbing that I had followed the whole story, watching the gradual disintegration of his mind.
"Now, the image of that shambling and confused man haunted me. Because I realised this is what would happen to Joshua.
"Everything that he learned would be forgotten. Everything he discovered about the world around him would be lost. Every toy that he loved would one day be discarded.
"The thought that eventually he wouldn't even recognise his beloved Grandad was unbearable."
With this, Jodie pauses and takes a painful gulp. "And then I remember that one day he won't even know me."
Joshua's condition is untreatable. A liver transplant is not an option because fatty deposits would attack any new organ. Jodie's beloved baby son is effectively a ticking time bomb.
At some point he will become clumsy, and start to tumble and fall. He will begin to forget where he has put his toys. Words will start to fail him, and he will have difficulty remembering the faces of those who love him.
Finally, he will lose the power of speech and the power to swallow. Jodie fights back tears as she says: "He loves his food so much. Whatever I cook for him, he really enjoys and that is what hurts me the most. The thought that he won't actually be able to swallow or taste the food he loves."
At the age of 21, where the only choices many girls make are where to go out on a Saturday night, Jodie is facing some of the most painful decisions any mother can make, and she does so with a maturity which belies her years.
"I don't want Joshua's life to be prolonged by painful treatment," she says. "I want him to remain happy and comfortable for as long as possible.
"It is hard to think about his death when he is so happy and doing so well. But I force myself to think about the future, for his sake. I want to plan it, so I don't fall apart when it happens.
"I've decided that when he has gone, I want to find a new career, a new chance to make the best of my life.
"I want Joshua to be proud of me, and I want to be the best mum he could ever hope for - even if he is in Heaven.
"I left school at 17 with just five GCSEs. Perhaps I'll go to college and study, maybe find a career which helps sick children. I just know I can't afford to go downhill and waste this precious chance.
"In the meantime, I just delight in everything Joshua does. If he's naughty, I pretend I'm cross but in truth I'm just thrilled that he has this incredible cheeky spirit.
"I video him all the time and then I watch the tapes back so I can savour every moment and enjoy every new little thing he does, time and time again."
Jodie has a baby book, where like many other first-time mothers, she meticulously records Joshua's progress.
There, her neat handwriting recalls, how he first crawled at ten months, pulled himself up to stand at nearly a year.
And last week, she recalls shakily, he said "Mummy" for the very first time. Up until then, he called her Jojo.
She smiles with pride and says: "His little voice is the sweetest sound I have ever heard."
And when it is gone, when Joshua can no longer say Mummy or plant wet kisses on her cheek, it is a memory she will hang on to for ever.
Tuesday, July 8, 2008
When the mountain talks to You
When the mountain talks to You.....
When the mountain talks to you
The ever changing progression of the mountain is like the ever changing progression of these diseases. Just when you think you are going to reach the summit, lightening strikes and sends you back down. Just when a breakthrough has been made in the understanding of a disease, lightening strikes and sends researchers back to the drawing board. A medication stops working. A medication won’t kick in. A beautiful mind is lost. A body is broken. We climb to reach the summit but we don’t always. But, we keep climbing, keep pushing to reach the next one. Base camp, high camp, the summit. Snow boots, crampons, ice axes, poles, goggles, backpacks, gloves, harness, rope team…..all needed to reach the top. Funding, awareness, advocates, caregivers, scientists, government approval, those who battle these diseases, foundations, Philanthropist’s, volunteers, street teams, walkers, climbers, bikers, hikers…..all needed to reach the top of this never ending search for the cures.
I reached an altitude of comfort on the mountain. A moment of clarity and a moment of reality. I trained hard in snow camp at base camp. I climbed up a straight incline of snow and ice with my rope team that consisted of Phil, our guide, Cy and Enzo. I conquered the side step, toes first, cross over step, duck walk. I walked without my crampons, with my crampons, without my ice axe, with my ice axe. I slid and fell several times. I stared up at the summit and prayed and thought about all of you. I carried letters and my well wishes blog that I printed out. I kept you all close. When I fell face first in the snow I picked my self back up. When I got snow and ice kicked in my face, down my coat, I just wiped it off, shook it out and kept moving. Five hours of training. My team supported me, cheered me on, sang to me “Come on Eileen”.
I may not have made it to the top this time. Not even to high camp, but I will never stop trying on some level to help others to do so. To keep giving them hope in a project that resonates change. A project that resonates progression. That speaks to millions and makes millions listen.
Disappointment in myself did not occur. It was a tough decision to make but the mountain talked and I listened. If others are disappointed in me and just don’t understand why, that is there prerogative. I stepped out of my comfort level, I trained hard, I developed a mind set to achieve this. Altitude sickness, vertigo, no sleep that night, and yes, fear made my mental state crash. It was best for the team that I didn’t continue. I stayed behind and sat in a car in front of the mountain for a full day and night and watched the progression of the mountain change. The summit disappearing in the clouds. The sunset reflecting the side of the mountain. The skiers making there way down. The water draining at the base of the mountain from melting snow. Searching for my team through my lens hoping I would see them. Praying for there safety. Finally falling asleep in the back seat of the car and waking up at 5 A.M. to the mountain gone. Thunder, lightening and rain all around me. Fear gripped my heart for my team. Were they still up there? The guides told us if it begins to lightening, we go down.
I went to the ski lodge. The doors were locked. I went to the hotel. The doors were locked. I drove to the upper parking lot and sat and waited. The weather made the mountain disappear. Until the storm passed it was like looking at just a parking lot at the base. And then they woke up. They were all around me. Parked on either side of me and I didn’t even realize it. They were evacuated at 1 A.M. Safe to the bottom but let me sleep. The dynamics of this team. Unquestionably the greatest. We united, happy to see one another. The summit still no where in site due to the storm. But we were all safe. Reunited, we moved past the moment and began the next phase.
Drawing awareness, telling our stories, sharing with the world. Believing in each other, why we do this, and helping each other through the disappointment of not summiting. Mapping out the next move, the next mountain, the next fundraiser, the next time we will all be together. Not a second, not a minute, hour, day, week, will ever be a waste to us. One hundred conversations, tears, laughter, togetherness for seven days. We are determined, driven and passionate.
Let there be no mistake; I chose not to go ahead with my team. They wanted me to try. They were all willing to help me get there. The guides would accommodate me. But my intuition overruled. The mountain stared down at me and told me no. I didn’t want anyone to put themselves out for me. They needed to climb with there own safety in mind. First and foremost, not to summit but to reach the bottom safely. I would have compromised this. It was not about reaching the top, it was about and still is, drawing awareness, raising funds.
We all have our mountains to conquer. Our fears to overcome. Our doubts and hopes and dreams to be understood. Passion drives us….love guides us.
The more we all unite, step up, get involved, the better the chances of helping our friends, our mom and dad, our sister or brother, our children, to have a better chance. And if those above battle these diseases, then a better chance at living a productive life. A chance to see it all through. I will join them again. Even if it is just at base camp. I won’t give up.
Together is One
World Up,
Strong Feather aka Eileen
When the mountain talks to you
The ever changing progression of the mountain is like the ever changing progression of these diseases. Just when you think you are going to reach the summit, lightening strikes and sends you back down. Just when a breakthrough has been made in the understanding of a disease, lightening strikes and sends researchers back to the drawing board. A medication stops working. A medication won’t kick in. A beautiful mind is lost. A body is broken. We climb to reach the summit but we don’t always. But, we keep climbing, keep pushing to reach the next one. Base camp, high camp, the summit. Snow boots, crampons, ice axes, poles, goggles, backpacks, gloves, harness, rope team…..all needed to reach the top. Funding, awareness, advocates, caregivers, scientists, government approval, those who battle these diseases, foundations, Philanthropist’s, volunteers, street teams, walkers, climbers, bikers, hikers…..all needed to reach the top of this never ending search for the cures.
I reached an altitude of comfort on the mountain. A moment of clarity and a moment of reality. I trained hard in snow camp at base camp. I climbed up a straight incline of snow and ice with my rope team that consisted of Phil, our guide, Cy and Enzo. I conquered the side step, toes first, cross over step, duck walk. I walked without my crampons, with my crampons, without my ice axe, with my ice axe. I slid and fell several times. I stared up at the summit and prayed and thought about all of you. I carried letters and my well wishes blog that I printed out. I kept you all close. When I fell face first in the snow I picked my self back up. When I got snow and ice kicked in my face, down my coat, I just wiped it off, shook it out and kept moving. Five hours of training. My team supported me, cheered me on, sang to me “Come on Eileen”.
I may not have made it to the top this time. Not even to high camp, but I will never stop trying on some level to help others to do so. To keep giving them hope in a project that resonates change. A project that resonates progression. That speaks to millions and makes millions listen.
Disappointment in myself did not occur. It was a tough decision to make but the mountain talked and I listened. If others are disappointed in me and just don’t understand why, that is there prerogative. I stepped out of my comfort level, I trained hard, I developed a mind set to achieve this. Altitude sickness, vertigo, no sleep that night, and yes, fear made my mental state crash. It was best for the team that I didn’t continue. I stayed behind and sat in a car in front of the mountain for a full day and night and watched the progression of the mountain change. The summit disappearing in the clouds. The sunset reflecting the side of the mountain. The skiers making there way down. The water draining at the base of the mountain from melting snow. Searching for my team through my lens hoping I would see them. Praying for there safety. Finally falling asleep in the back seat of the car and waking up at 5 A.M. to the mountain gone. Thunder, lightening and rain all around me. Fear gripped my heart for my team. Were they still up there? The guides told us if it begins to lightening, we go down.
I went to the ski lodge. The doors were locked. I went to the hotel. The doors were locked. I drove to the upper parking lot and sat and waited. The weather made the mountain disappear. Until the storm passed it was like looking at just a parking lot at the base. And then they woke up. They were all around me. Parked on either side of me and I didn’t even realize it. They were evacuated at 1 A.M. Safe to the bottom but let me sleep. The dynamics of this team. Unquestionably the greatest. We united, happy to see one another. The summit still no where in site due to the storm. But we were all safe. Reunited, we moved past the moment and began the next phase.
Drawing awareness, telling our stories, sharing with the world. Believing in each other, why we do this, and helping each other through the disappointment of not summiting. Mapping out the next move, the next mountain, the next fundraiser, the next time we will all be together. Not a second, not a minute, hour, day, week, will ever be a waste to us. One hundred conversations, tears, laughter, togetherness for seven days. We are determined, driven and passionate.
Let there be no mistake; I chose not to go ahead with my team. They wanted me to try. They were all willing to help me get there. The guides would accommodate me. But my intuition overruled. The mountain stared down at me and told me no. I didn’t want anyone to put themselves out for me. They needed to climb with there own safety in mind. First and foremost, not to summit but to reach the bottom safely. I would have compromised this. It was not about reaching the top, it was about and still is, drawing awareness, raising funds.
We all have our mountains to conquer. Our fears to overcome. Our doubts and hopes and dreams to be understood. Passion drives us….love guides us.
The more we all unite, step up, get involved, the better the chances of helping our friends, our mom and dad, our sister or brother, our children, to have a better chance. And if those above battle these diseases, then a better chance at living a productive life. A chance to see it all through. I will join them again. Even if it is just at base camp. I won’t give up.
Together is One
World Up,
Strong Feather aka Eileen
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