Twenty-Eight - Posted on January 7, 2013
Light snow is falling it's Monday afternoon January 7, 1985 . and Neal Jr. is born at 2:40 P.M. weighing 7 lbs 4 ounces length 19 3/4 inches. In Celtic tradition the name Neal means: Chief, Champion, Courageous. Twenty-eight years after that snowy afternoon, Neal Jr. continues to teach all of us many life lessons and he does so with grace and dignity. Every day is filled with many challenges and struggles and yet Neal continues to brighten the lives of his family and friends. As a chief, Neal leads all of us on our shared journey. As a champion, Neal is a long term survior of pediatric brain cancer. As Courageous, Neal is resilient and determined in dealing with daily issues. Neal inspires everyone who knows him and he continues to touch the lives of people from many walks of life. Happy Birthday Buddy.
Light snow is falling it's Monday afternoon January 7, 1985 . and Neal Jr. is born at 2:40 P.M. weighing 7 lbs 4 ounces length 19 3/4 inches. In Celtic tradition the name Neal means: Chief, Champion, Courageous. Twenty-eight years after that snowy afternoon, Neal Jr. continues to teach all of us many life lessons and he does so with grace and dignity. Every day is filled with many challenges and struggles and yet Neal continues to brighten the lives of his family and friends. As a chief, Neal leads all of us on our shared journey. As a champion, Neal is a long term survior of pediatric brain cancer. As Courageous, Neal is resilient and determined in dealing with daily issues. Neal inspires everyone who knows him and he continues to touch the lives of people from many walks of life. Happy Birthday Buddy.
Darkness and Light - Posted on December 21, 2012
This is the twenty-first anniversary of Neal beginning hospice care, just seventeen days before his seventh birthday. The darkest point in our family's history began on the day with the fewest hours of sunlight. Today, Neal presented a check from the Neal O'Brien Jr. Love is Magic Foundation Inc, to Boston Children's Hospital. The donation will be for the extraordinary care fund program, within the intensive care units of the hospital. Over the course of Neal's life we have traveled to Children's hospital literally hundreds of times. It may be difficult to understand, but each trip is unique. There are always unexpected events that just seem to take place as part of the hospital experience. As we approached the main entrance of the hospital, I was struck by the sights of many people dropping off bags of toys. These gifts will go to children who because of illness will not be able to leave the hospital at Christmas. The simple acts of kindness remind me of what is truly important. We were joined at the hospital today by a special friend, Doctor Christopher Almond. He is a beacon of light and a wonderful gift to Neal and our family. So today has been truly a day of many sights and emotions. Christmas is near, let us follow the star, let us follow the light.
Sunday mornings Posted by Neal O'Brien on June 24, 2012
There is a rhythm to Sunday morning that makes it my favorite time of the week. Throughout each week, there is little downtime in being one of Neal’s primary caregiver’s. Throughout the work week, we rush to keep up with our daily schedules . When Neal is receiving his scheduled list of medications or respiratory treatments, I’m focused on the moment, and preparing for the next scheduled treatment. It seems as if I’m always looking at the clock, thinking and reacting to Mr. Time. Although the list of medicine and respiratory treatments remain the same everyday, the pressure of rushing to get somewhere is nonexistent on Sunday mornings. When I’m helping Neal start his Sunday morning, I am focused only on Neal and in the moment. This is a very special place where there are no outside influences or interruptions. It is personal, private and peaceful. These Sunday mornings touch my heart and speak to my soul. In this place, I look back and reflect on the events of the previous week
Neal struggled this week with congestion in his lungs and by early Wednesday morning it appeared that Neal was in respiratory distress. That morning a nurse evaluated Neal while we contacted one of the critical care doctor’s who follows Neal closely. The decision was made to start Neal on an anti-biotic and to care for him at home. Thankfully, Neal has made steady progress, feeling better each day. By Saturday, Neal was well enough to go out and have some fun.
One of the nurses who cares for Neal is the wife of a fire lieutenant from a neighboring community. We had made plans a few weeks back to visit the firehouse as long as Neal was feeling up to it.
Neal was very happy to visit the firehouse and the firefighters were very accommodating to our family. Special thanks go out to Laura, Tom, Greg and Carl. After our visit at the firehouse we seized the moment and went out to lunch. While at lunch we engaged in a poignant conversation with a husband and wife who were seating nearby. They were obviously taken by Neal and they looked our way many times, smiling, nodding and acknowledging Neal. The woman later shared they had a son who had been born with a cyst on his brain stem. She spoke of the joy that he had given them throughout his life. She went onto say that it was obvious the joy which Neal brings to us.
So this is a window into life with Mr. Neal. There are difficult days which require medical intervention with Neal’s critical care team and then there are days of meeting new people and establishing special friendships. We go with the flow, we hope for the best and we make the most of each day.
Mr. NealPosted by nealobrien on June 17, 2012 in Uncategorized
Sometimes in life we experience events that forever set our internal, emotional clock. Father’s day weekend of 1991 is one of those experiences. Neal was diagnosed with a brain tumor on the Friday leading into Father’s Day weekend. The decision was made that Neal would undergo surgery at Boston Children’s Hospital the following Tuesday. I still remember that Father’s day afternoon when Neal had 32 visitor’s in his room. Clearly he was surrounded by a great deal of love. Neal’ surgery was performed that Tuesday by Michel Scott who is not only a gifted surgeon, but also a wonderful humanitarian. Doctor Scott referred to our six year old son as Mr. Neal, a name that has stay with him through all these years.
The pathology results from the surgery were poor and Neal began radiation therapy a short time later. Neal began the first grade in September of that year and it was at that point we were told that the radiation treatments had been unsuccessful and that the tumor was continuing to grow.
Neal’s condition worsened throughout the fall and he was readmitted to Boston Children’s Hospital In mid December with a rapidly declining neurological status. He was released from the hospital five days later under hospice care. The coldest rain I have ever felt fell on the city of Boston the night we left the hospital. The rain stung my face, it was if the heaven’s were crying tears for Mr. Neal.
Twenty – one Father’s Day’s later, Mr. Neal has gone on to survive pediatric brain cancer. He is a twenty-seven year old young man who continues to touch the lives of many people. Neal survived the darkness of that winter of 1991- 1992 and has gone onto lead a remarkable life.
Neal attended the Cotting School in Lexington for many years where the students and staff were very supportive. During those years, Mr. Neal was involved in Special Olympics and Challenger Baseball.
Neal then went onto the Massachusetts Hospital School in Canton, where he was a residential student for three and a half years. Having Neal live in residence at the hospital school was initially a difficult transition for all of us, but it turned out to be the best option for Neal and our family. Neal graduated from the Massachusetts Hospital School in June of 2007, the same year that his sister Maura graduated from high school.
It was at that time that I began to think about finding a way to honor Mr. Neal by establishing a non-profit charitable foundation. I just wasn’t sure at that time as to what format a possible foundation might take on. Maura was heading off to college and Neal was entering the world of adult services.
Neal’s health began to decline in the fall of 2007 and he was hospitalized with a mild form of pneumonia. The winter of 2008 was very difficult and Neal was in patient for more than 50 days at Boston Children’s Hospital. Neal was rushed into intensive care on Easter Sunday evening for an emergency intubation.
You can not prepare yourself for life in the intensive care unit of Boston Children’s Hospital. Neal had been in the unit a few times through the years for short periods of observation, but he was now in-beaded in the unit. That experience had a significant impact on our family.
We not only saw Neal’s struggles, but also the struggles of so many other children. We also were witnesses to incredible compassion and skill of the doctors and nurses who are so cool under so much pressure.
It was through this experience that the idea for the foundation was forged.
Neal has withstood two additional serious life threatening events in 2009 and 2011 that required significant intervention from the staff at Boston Children’s Hospital.
So, on Father’s Day 2012 I am pleased to look forward to the future good works of the Neal O’Brien Jr. Love is Magic Foundation. Neal O’Brien Jr. Love is Magic, Inc. shall be dedicated to provide support for children and families of children with life threatening illnesses and / or injuries. We speak from personal experience in dealing with the emotional and financial burdens caused by life threatening illnesses. It is our intent for the proceeds and good works of the foundation to be used by hospitals and family support organizations to assist families dealing with financial and emotional burdens during medical crisis.
In helping those in need, the foundation will also be a living testimony to the courage, determination and spirit of Neal O’Brien Jr. who is a survivor for more than twenty years of a pediatric brain tumor.
The Corporation will work exclusively for charitable, social and educational purposes in accordance with activities permitted to be carried out by a Corporation exempt from federal income tax under section 501(c)(3) of the Internal Revenue Code.
Love is MagicPosted by nealobrien on December 6, 2011 in Uncategorized
I am the proud and humble father of two young adults, one of whom is a very courageous young man who is a twenty – year survivor of a pediatric brain tumor. Neal has defied medical understanding on a number of occasions where he has survived events which have placed him in critical condition. Over the course of these twenty years, he has survived advance cancer which left Neal under hospice care during the Winter of 1991 – 92. Neal has also endured three respiratory illnesses where he has been hospitalized in unstable critical condition. These events have brought me to some very dark places and also to unexpected places of immense joy. Neal has remarkable courage and an internal strength that I continue to witness on a daily basis. He is a gentle soul, close to God who exudes love.Neal has touched the lives of so many people from all walks of life.
To celebrate the twenty year survivorship milestone, I have decided to honor Neal’s spirit by establishing the “Love is Magic Foundation.” This non-profit charitable foundation will allow our family and friends opportunities to help children and families of children facing life threatening illnesses. We all have choices to make in our daily living. Do we curse the darkness or embrace the light. My son shows me the way everyday and that is to be my best,give my best and to love my best. In our humanity we are called to serve others and to help those in need. I speak from personal experience that there truly is a great need to help children and their families as they face the extreme difficulties of life threatening illness. Please consider how you may be able to help those in need.
Peace, Neal Sr.
There is a rhythm to Sunday morning that makes it my favorite time of the week. Throughout each week, there is little downtime in being one of Neal’s primary caregiver’s. Throughout the work week, we rush to keep up with our daily schedules . When Neal is receiving his scheduled list of medications or respiratory treatments, I’m focused on the moment, and preparing for the next scheduled treatment. It seems as if I’m always looking at the clock, thinking and reacting to Mr. Time. Although the list of medicine and respiratory treatments remain the same everyday, the pressure of rushing to get somewhere is nonexistent on Sunday mornings. When I’m helping Neal start his Sunday morning, I am focused only on Neal and in the moment. This is a very special place where there are no outside influences or interruptions. It is personal, private and peaceful. These Sunday mornings touch my heart and speak to my soul. In this place, I look back and reflect on the events of the previous week
Neal struggled this week with congestion in his lungs and by early Wednesday morning it appeared that Neal was in respiratory distress. That morning a nurse evaluated Neal while we contacted one of the critical care doctor’s who follows Neal closely. The decision was made to start Neal on an anti-biotic and to care for him at home. Thankfully, Neal has made steady progress, feeling better each day. By Saturday, Neal was well enough to go out and have some fun.
One of the nurses who cares for Neal is the wife of a fire lieutenant from a neighboring community. We had made plans a few weeks back to visit the firehouse as long as Neal was feeling up to it.
Neal was very happy to visit the firehouse and the firefighters were very accommodating to our family. Special thanks go out to Laura, Tom, Greg and Carl. After our visit at the firehouse we seized the moment and went out to lunch. While at lunch we engaged in a poignant conversation with a husband and wife who were seating nearby. They were obviously taken by Neal and they looked our way many times, smiling, nodding and acknowledging Neal. The woman later shared they had a son who had been born with a cyst on his brain stem. She spoke of the joy that he had given them throughout his life. She went onto say that it was obvious the joy which Neal brings to us.
So this is a window into life with Mr. Neal. There are difficult days which require medical intervention with Neal’s critical care team and then there are days of meeting new people and establishing special friendships. We go with the flow, we hope for the best and we make the most of each day.
Mr. NealPosted by nealobrien on June 17, 2012 in Uncategorized
Sometimes in life we experience events that forever set our internal, emotional clock. Father’s day weekend of 1991 is one of those experiences. Neal was diagnosed with a brain tumor on the Friday leading into Father’s Day weekend. The decision was made that Neal would undergo surgery at Boston Children’s Hospital the following Tuesday. I still remember that Father’s day afternoon when Neal had 32 visitor’s in his room. Clearly he was surrounded by a great deal of love. Neal’ surgery was performed that Tuesday by Michel Scott who is not only a gifted surgeon, but also a wonderful humanitarian. Doctor Scott referred to our six year old son as Mr. Neal, a name that has stay with him through all these years.
The pathology results from the surgery were poor and Neal began radiation therapy a short time later. Neal began the first grade in September of that year and it was at that point we were told that the radiation treatments had been unsuccessful and that the tumor was continuing to grow.
Neal’s condition worsened throughout the fall and he was readmitted to Boston Children’s Hospital In mid December with a rapidly declining neurological status. He was released from the hospital five days later under hospice care. The coldest rain I have ever felt fell on the city of Boston the night we left the hospital. The rain stung my face, it was if the heaven’s were crying tears for Mr. Neal.
Twenty – one Father’s Day’s later, Mr. Neal has gone on to survive pediatric brain cancer. He is a twenty-seven year old young man who continues to touch the lives of many people. Neal survived the darkness of that winter of 1991- 1992 and has gone onto lead a remarkable life.
Neal attended the Cotting School in Lexington for many years where the students and staff were very supportive. During those years, Mr. Neal was involved in Special Olympics and Challenger Baseball.
Neal then went onto the Massachusetts Hospital School in Canton, where he was a residential student for three and a half years. Having Neal live in residence at the hospital school was initially a difficult transition for all of us, but it turned out to be the best option for Neal and our family. Neal graduated from the Massachusetts Hospital School in June of 2007, the same year that his sister Maura graduated from high school.
It was at that time that I began to think about finding a way to honor Mr. Neal by establishing a non-profit charitable foundation. I just wasn’t sure at that time as to what format a possible foundation might take on. Maura was heading off to college and Neal was entering the world of adult services.
Neal’s health began to decline in the fall of 2007 and he was hospitalized with a mild form of pneumonia. The winter of 2008 was very difficult and Neal was in patient for more than 50 days at Boston Children’s Hospital. Neal was rushed into intensive care on Easter Sunday evening for an emergency intubation.
You can not prepare yourself for life in the intensive care unit of Boston Children’s Hospital. Neal had been in the unit a few times through the years for short periods of observation, but he was now in-beaded in the unit. That experience had a significant impact on our family.
We not only saw Neal’s struggles, but also the struggles of so many other children. We also were witnesses to incredible compassion and skill of the doctors and nurses who are so cool under so much pressure.
It was through this experience that the idea for the foundation was forged.
Neal has withstood two additional serious life threatening events in 2009 and 2011 that required significant intervention from the staff at Boston Children’s Hospital.
So, on Father’s Day 2012 I am pleased to look forward to the future good works of the Neal O’Brien Jr. Love is Magic Foundation. Neal O’Brien Jr. Love is Magic, Inc. shall be dedicated to provide support for children and families of children with life threatening illnesses and / or injuries. We speak from personal experience in dealing with the emotional and financial burdens caused by life threatening illnesses. It is our intent for the proceeds and good works of the foundation to be used by hospitals and family support organizations to assist families dealing with financial and emotional burdens during medical crisis.
In helping those in need, the foundation will also be a living testimony to the courage, determination and spirit of Neal O’Brien Jr. who is a survivor for more than twenty years of a pediatric brain tumor.
The Corporation will work exclusively for charitable, social and educational purposes in accordance with activities permitted to be carried out by a Corporation exempt from federal income tax under section 501(c)(3) of the Internal Revenue Code.
Love is MagicPosted by nealobrien on December 6, 2011 in Uncategorized
I am the proud and humble father of two young adults, one of whom is a very courageous young man who is a twenty – year survivor of a pediatric brain tumor. Neal has defied medical understanding on a number of occasions where he has survived events which have placed him in critical condition. Over the course of these twenty years, he has survived advance cancer which left Neal under hospice care during the Winter of 1991 – 92. Neal has also endured three respiratory illnesses where he has been hospitalized in unstable critical condition. These events have brought me to some very dark places and also to unexpected places of immense joy. Neal has remarkable courage and an internal strength that I continue to witness on a daily basis. He is a gentle soul, close to God who exudes love.Neal has touched the lives of so many people from all walks of life.
To celebrate the twenty year survivorship milestone, I have decided to honor Neal’s spirit by establishing the “Love is Magic Foundation.” This non-profit charitable foundation will allow our family and friends opportunities to help children and families of children facing life threatening illnesses. We all have choices to make in our daily living. Do we curse the darkness or embrace the light. My son shows me the way everyday and that is to be my best,give my best and to love my best. In our humanity we are called to serve others and to help those in need. I speak from personal experience that there truly is a great need to help children and their families as they face the extreme difficulties of life threatening illness. Please consider how you may be able to help those in need.
Peace, Neal Sr.
