I started this blog about a year ago, with the intention of writing much more than I have. I thought that I would give "A True Account" here about whatever I was thinking - any subject, any opinion, no filters. I did not intend to replace the boys' caringbridge site http://www.caringbridge.org/wi/zachsam but I do not feel that is the forum for anything except Zach and Sam.
Needless to say I have written only a handful of times....but I am going to give it a try again. We'll see how it goes. Today, it is just a repeat of what is on the boys' site as I want to honor Brody in every way possible. I am not planning to repeat things except on exceptional occasions.
30 September, 2009
You Can't Take Them With You
Brody has been listed for a multi organ transplant for four years. He was listed shortly after Sam died, when he was doing relatively well, with the hope that he would get new organs before he was too sick to truly benefit. But those organs never came. Four years and they never came. It’s true that he had a blood type that is not the most common. It is true that there are fewer organs for children. But four years and no organs. I am having a very hard time with that.
I had a hard time when this happened to Samantha, Sam’s first friend. Some days I still do when I think about her running around and playing Barbies and bossing Sam in the play kitchen. (Sammi is the only person Sam ever let boss him.) Samantha Rose died before she was five years old. She was born with “short gut” meaning not enough intestines. It’s a big deal and yet it’s not. A new intestine was all she needed. She, also, was listed when she was healthy. That way, the doctors and her parents thought, the organs would come before she was in an ICU, before the chance of successful transplant would be so much less. In the end, she lived a year in the ICU and never got organs.
This does not have to happen. So please, if you have never thought about organ donation, think about it now. You can’t take your organs with you on your journey from Earth – but you can give them to someone, therefore giving them life. Sign the back of your driver’s license, talk with your family, and let them know if you want your organs donated.
No one likes to think about it –I understand that. But think about it and talk about it anyway. Tonight and every night from here on out, my friends Laura and Kristi are going to bed without having tucked their children into bad. And they are waking up every morning to silence. They are but two of many family members who have lost someone they love due to lack of organs. It does not have to happen that way if people simply direct their family to make sure their organs are donated in the event of death.
I had a hard time when this happened to Samantha, Sam’s first friend. Some days I still do when I think about her running around and playing Barbies and bossing Sam in the play kitchen. (Sammi is the only person Sam ever let boss him.) Samantha Rose died before she was five years old. She was born with “short gut” meaning not enough intestines. It’s a big deal and yet it’s not. A new intestine was all she needed. She, also, was listed when she was healthy. That way, the doctors and her parents thought, the organs would come before she was in an ICU, before the chance of successful transplant would be so much less. In the end, she lived a year in the ICU and never got organs.
This does not have to happen. So please, if you have never thought about organ donation, think about it now. You can’t take your organs with you on your journey from Earth – but you can give them to someone, therefore giving them life. Sign the back of your driver’s license, talk with your family, and let them know if you want your organs donated.
No one likes to think about it –I understand that. But think about it and talk about it anyway. Tonight and every night from here on out, my friends Laura and Kristi are going to bed without having tucked their children into bad. And they are waking up every morning to silence. They are but two of many family members who have lost someone they love due to lack of organs. It does not have to happen that way if people simply direct their family to make sure their organs are donated in the event of death.
Brody James Cole
Brody James Cole, 7, was granted his angel wings on September 29, 2009, following a lifelong illness with mitochondrial disease. Brody’s life would seem very short to many, but those who were touched by him understood that the quality of existence far exceeds the quantity of time in which one lives.
Brody touched so many people in his short, yet very memorable life. Brody lived life to the fullest despite his illness. Through it all, Brody remained a happy, vibrant little boy who always became the center of attention wherever he went due to his outgoing and very special personality. Brody’s ambition in life was to become the Red Power Ranger when he grew up.
Brody is survived by his loving parents, Kristi Cole of Powder Springs and Donald Cole of Hiram. Brody was blessed to have two caring big brothers, Jacob and Logan. Brody’s grandparents were James and Shirley Townsend of Powder Springs and Tim and Dona Cole of Douglasville. Aunts and Uncles included Tim and Bobbi Cole, Melissa Cole, Jim Townsend, Kevin Townsend, and Kelly Townsend. Brody leaves behind many wonderful caregivers that provided love and support that not only extended his life but greatly enhanced its quality.
With Brody’s passing we remind others that his life is one to be celebrated. Although we will miss him everyday, he will forever remain in our hearts.
Services honoring Brody’s life will begin with visitation on Thursday and Friday evening from 4-8 p.m. at Davis-Struempf Funeral Home & Crematory in Austell, GA. http://davisstruempf.com/ Brody’s homegoing celebration will be held at Powder Springs First Baptist Church. http://www.fbcps.org/ Brody will lie-in-state from 1-2 p.m. with service to follow.
In lieu of flowers, donations may be made to:
The United Mitochondrial Disease Foundation
8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
Online donations can be made to www.umdf.org
Angel Flight of Georgia
2000 Airport Road
Suite 227
Atlanta, GA 30341
Online donations can be made to www.angelflightsoars.org
Children’s Healthcare of Atlanta
1001 Johnson Ferry Road NE
Atlanta, GA 30342
Online donations can be made to www.choa.org
Brody touched so many people in his short, yet very memorable life. Brody lived life to the fullest despite his illness. Through it all, Brody remained a happy, vibrant little boy who always became the center of attention wherever he went due to his outgoing and very special personality. Brody’s ambition in life was to become the Red Power Ranger when he grew up.
Brody is survived by his loving parents, Kristi Cole of Powder Springs and Donald Cole of Hiram. Brody was blessed to have two caring big brothers, Jacob and Logan. Brody’s grandparents were James and Shirley Townsend of Powder Springs and Tim and Dona Cole of Douglasville. Aunts and Uncles included Tim and Bobbi Cole, Melissa Cole, Jim Townsend, Kevin Townsend, and Kelly Townsend. Brody leaves behind many wonderful caregivers that provided love and support that not only extended his life but greatly enhanced its quality.
With Brody’s passing we remind others that his life is one to be celebrated. Although we will miss him everyday, he will forever remain in our hearts.
Services honoring Brody’s life will begin with visitation on Thursday and Friday evening from 4-8 p.m. at Davis-Struempf Funeral Home & Crematory in Austell, GA. http://davisstruempf.com/ Brody’s homegoing celebration will be held at Powder Springs First Baptist Church. http://www.fbcps.org/ Brody will lie-in-state from 1-2 p.m. with service to follow.
In lieu of flowers, donations may be made to:
The United Mitochondrial Disease Foundation
8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
Online donations can be made to www.umdf.org
Angel Flight of Georgia
2000 Airport Road
Suite 227
Atlanta, GA 30341
Online donations can be made to www.angelflightsoars.org
Children’s Healthcare of Atlanta
1001 Johnson Ferry Road NE
Atlanta, GA 30342
Online donations can be made to www.choa.org
21 June, 2009
Iranian Protests
I'm in awe of the Iranian people protesting in the streets. They are literally risking their lives for something as "simple" as the right to have their vote count.
The number of people voting in our country sharply plummets when it rains - we won't even risk a bad hair day to vote. WE turn away if the lines is more than an hour long. Voting is too often seen as an inconvenience rather than a right with a responsibility.
I ask myself, every time I see a news account showing pictures of the streets of Tehran right now, with protesters being beaten, amidst tear gas and water bombs - "would I be in the street?" I don't know. I suspect the people on the streets would have answered the same three months ago. "I don't know." I imagine that those who fought in war and protested civil rights thought that same. "I don't know."
My guess is that most of us would tolerate some degree of infringement of our life, liberty and pursuit of happiness. But there must be an imaginary line, beyond which, it is untenable to tolerate further erosion of those truths. As vastly different as the human being is, that line must be drawn in a similar place for many world citizens....for it seems that once crossed the majority of citizens find that they are no longer able to sit back and say "I don't know." The answer is either "Yes, these are truths worth fighting for" or "No."
We are witnessing now, a courageous display of "Yes, these truths are worth fighting for." People banding together, foregoing their own self interest (risking their lives to march is not in their self interest) in order to stand together, as one, and say "enough is enough!"
I hope the Iranian protesters, fellow citizens of the world, know how deeply we respect them, how much we are praying for them, hoping for them, weeping with them and cheering with them.
The number of people voting in our country sharply plummets when it rains - we won't even risk a bad hair day to vote. WE turn away if the lines is more than an hour long. Voting is too often seen as an inconvenience rather than a right with a responsibility.
I ask myself, every time I see a news account showing pictures of the streets of Tehran right now, with protesters being beaten, amidst tear gas and water bombs - "would I be in the street?" I don't know. I suspect the people on the streets would have answered the same three months ago. "I don't know." I imagine that those who fought in war and protested civil rights thought that same. "I don't know."
My guess is that most of us would tolerate some degree of infringement of our life, liberty and pursuit of happiness. But there must be an imaginary line, beyond which, it is untenable to tolerate further erosion of those truths. As vastly different as the human being is, that line must be drawn in a similar place for many world citizens....for it seems that once crossed the majority of citizens find that they are no longer able to sit back and say "I don't know." The answer is either "Yes, these are truths worth fighting for" or "No."
We are witnessing now, a courageous display of "Yes, these truths are worth fighting for." People banding together, foregoing their own self interest (risking their lives to march is not in their self interest) in order to stand together, as one, and say "enough is enough!"
I hope the Iranian protesters, fellow citizens of the world, know how deeply we respect them, how much we are praying for them, hoping for them, weeping with them and cheering with them.
19 January, 2009
"The Afterlife of Near Death"
I, like the rest of the world, was in awe, last Thursday when all 155 passengers on US Air Flight 1549 survived their winter dip into the Hudson. Governor Patterson (NY) referred to their survival as “Miracle on the Hudson” - very apropos. There have been an abundance of articles since then. One that struck me in particular was in the Sunday Times. “The Afterlife of Near-Death. ” Benedict Carey used the tale of Flight 1549 to expand on the lasting impact of a near death experiences.
Carey described two reactions. “There’s a host of people who speak about being horrified, traumatized, who talk about a distortion in time afterwards, almost as though the accident or experience happened moments ago… some sink into despair, struggling with jagged images of their near-extinction.”
A second group of survivors have a very different reaction. These are the people who walk away with“a new sense of living and vitality — they’re very grateful, and feel blessed to have survived.” This group reports being left with “a sense of meaning and purpose in the traumatic experience and in life in general that buffers long-term emotional distress.”
I could not help but interpret the article within the context of Zach & Sam. Zach and Sam had many near death experiences. The physical continuance of my life was never in question during those times; yet I felt - and continue to feel - as if my life was threatened right along with theirs. And I suppose, depending on one’s definition of life – it was. Zach and Sam, along with my daughters, are the best part of my life and part of me died when they each died.
Carey writes that survivors remember “…as though the accident or experience happened moments ago…” Flashbacks. Countless times a day memories are triggered and I can feel them. I can remember– viscerally – without effort - that space between life and death that my children occupied countless times. I can remember begging doctors, God, the stars and the air to give them one more day. I can feel the nausea, heart break and terror -as if it happened moments ago. It’s as much a physiological remembering as cognitive. There was no reference in the article to any of this - the impact of a traumatic, near death event on a mother -family - loved ones.
I can also feel the moment when it was clear that at least one more day had been granted, and then another and another. That memory, too, is visceral. There was always such great relief - joy -and hope. Zach and Sam’s lives might be finite but at least, for that moment, the end had not come. There were smiles and hugs and a return to joking and laughter. The darkened rooms in the hospital or at home were filled with radiating light whenever Zach or Sam got better. Of course, better was always relative. They were often still considered critically ill. Even so, better is better -and I felt thankful for better -thankful that we could get back to living.
Back to living but disconcerted and thrown off balance by the rapidity of the transformation between day and night, joy and despair, the expectation of promise and the feeling of ominous. The world can spin out of control in the blink of an eye. One moment reading to a child and the next watching him fight for his life. Plans for what we’d do tomorrow erased an hour later by a code team’s effort to give him tomorrow.
For a time my emotions and thoughts were miles behind their survival - a mismatched response to a wondrous recovery. For a time I felt an overwhelming vulnerability. Clearly my effort to sandbag the riverbank had not prevented the waters from rising -flooding all that was. That realization always felt new – no matter how many times it hit me. It always left me a bit shell shocked -for a time.
Eventually the earth settled beneath my feet but life was never the same. Life can change in a moment. Everyone “knows” that but knowing that someone else’s life changed in a moment is not the same as experiencing it -and it is the experience that brings insight. How tenuous life is.
Acumen marks a person who had a “near death experience” from one who did not. And that comprehension – reinforced over and over again – across many years -was the context within which Zach & Sam lived. Comprehension imparts sacredness to life. The little things in life become just that…little. Insignificant. Life is at once recognized as finite and a gift. Don’t take it for granted.
Make no mistake -I’m not the virtuous, honorable type of mother who can look to God and know there was a purpose to it all. The only purpose I see is in their lives and I have come no further in my “understanding” of a child dying since the day Sam died.
Almost every night I go to bed thinking about something Bobby Kennedy said. Quoting Aeschylus to a crowd grieving Dr. MLK’s death he said:
I’m unsure how much Zach -and especially Sam – understood. Did they know how close to death they came? Many know the story of Sam, waking in the ICU a day after the doctor woke me at 2:00 am to say he was unsure Sam would make it if his lungs got any worse. He was not scared about being in the ICU. Rather he sat straight up and ripped his oxygen mask off. His first words were not, “I’m alive!” Rather he demanded to know “who put this foley in my penis?”
The psychologist said I should let Zach take the lead in terms of talking about illness and death. Well, Zach rarely talked about death, aside from asking if he could have my brain -in a jar – if I should die. (I’ll take it as a sign of admiration) When he rallied his first words were not, “I’m alive!” Instead he questioned “where’s my Nintendo.” and “Can I order a smoothie?” If I looked too worried he’d ask his doctor, “What’s her problem?”
That they came so close to falling off life’s precipice may or may not have been something they knew. They seemed to take illness and recovery in stride. However, there is absolutely no doubt in my mind that they comprehended that life was to be experienced. Both approached each day in anticipation of its possibility and promise.
"In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, against our will, comes wisdom through the awful grace of God."
It was impossible not to be touched by both their critical, life threatening illnesses and their infectuous outlook on life. Play; eat ice cream for breakfast; don’t worry about making your bed or cleaning your room. We’ll do whatever is needed for you to go to school, take a vacation, trick or treat even if you only stay out ten minutes. Yes - have friends over; of course, we can read one more book and no I don’t mind if you get glue, sparkles, play dough and paints all over the kitchen.
Standing here on earth with Zach and Sam somewhere beyond my reach – in a place where I cannot see, hear or touch them, I am drawn to the title of the article – “The afterlife of near death experience.” In the afterlife of each near death experience the warning was clear.
Carey described two reactions. “There’s a host of people who speak about being horrified, traumatized, who talk about a distortion in time afterwards, almost as though the accident or experience happened moments ago… some sink into despair, struggling with jagged images of their near-extinction.”
A second group of survivors have a very different reaction. These are the people who walk away with“a new sense of living and vitality — they’re very grateful, and feel blessed to have survived.” This group reports being left with “a sense of meaning and purpose in the traumatic experience and in life in general that buffers long-term emotional distress.”
I could not help but interpret the article within the context of Zach & Sam. Zach and Sam had many near death experiences. The physical continuance of my life was never in question during those times; yet I felt - and continue to feel - as if my life was threatened right along with theirs. And I suppose, depending on one’s definition of life – it was. Zach and Sam, along with my daughters, are the best part of my life and part of me died when they each died.
Carey writes that survivors remember “…as though the accident or experience happened moments ago…” Flashbacks. Countless times a day memories are triggered and I can feel them. I can remember– viscerally – without effort - that space between life and death that my children occupied countless times. I can remember begging doctors, God, the stars and the air to give them one more day. I can feel the nausea, heart break and terror -as if it happened moments ago. It’s as much a physiological remembering as cognitive. There was no reference in the article to any of this - the impact of a traumatic, near death event on a mother -family - loved ones.
I can also feel the moment when it was clear that at least one more day had been granted, and then another and another. That memory, too, is visceral. There was always such great relief - joy -and hope. Zach and Sam’s lives might be finite but at least, for that moment, the end had not come. There were smiles and hugs and a return to joking and laughter. The darkened rooms in the hospital or at home were filled with radiating light whenever Zach or Sam got better. Of course, better was always relative. They were often still considered critically ill. Even so, better is better -and I felt thankful for better -thankful that we could get back to living.
Back to living but disconcerted and thrown off balance by the rapidity of the transformation between day and night, joy and despair, the expectation of promise and the feeling of ominous. The world can spin out of control in the blink of an eye. One moment reading to a child and the next watching him fight for his life. Plans for what we’d do tomorrow erased an hour later by a code team’s effort to give him tomorrow.
For a time my emotions and thoughts were miles behind their survival - a mismatched response to a wondrous recovery. For a time I felt an overwhelming vulnerability. Clearly my effort to sandbag the riverbank had not prevented the waters from rising -flooding all that was. That realization always felt new – no matter how many times it hit me. It always left me a bit shell shocked -for a time.
Eventually the earth settled beneath my feet but life was never the same. Life can change in a moment. Everyone “knows” that but knowing that someone else’s life changed in a moment is not the same as experiencing it -and it is the experience that brings insight. How tenuous life is.
Acumen marks a person who had a “near death experience” from one who did not. And that comprehension – reinforced over and over again – across many years -was the context within which Zach & Sam lived. Comprehension imparts sacredness to life. The little things in life become just that…little. Insignificant. Life is at once recognized as finite and a gift. Don’t take it for granted.
Make no mistake -I’m not the virtuous, honorable type of mother who can look to God and know there was a purpose to it all. The only purpose I see is in their lives and I have come no further in my “understanding” of a child dying since the day Sam died.
Almost every night I go to bed thinking about something Bobby Kennedy said. Quoting Aeschylus to a crowd grieving Dr. MLK’s death he said:
"In our sleep,
pain which cannot forget
falls drop by drop upon the heart
until, in our own despair,
against our will, comes wisdom
through the awful grace of God."
Out of the despair of their many near death experiences came both wisdom – life is fragile -and a warning – enjoy every minute of their lives for we know not what tomorrow will bring.I’m unsure how much Zach -and especially Sam – understood. Did they know how close to death they came? Many know the story of Sam, waking in the ICU a day after the doctor woke me at 2:00 am to say he was unsure Sam would make it if his lungs got any worse. He was not scared about being in the ICU. Rather he sat straight up and ripped his oxygen mask off. His first words were not, “I’m alive!” Rather he demanded to know “who put this foley in my penis?”
The psychologist said I should let Zach take the lead in terms of talking about illness and death. Well, Zach rarely talked about death, aside from asking if he could have my brain -in a jar – if I should die. (I’ll take it as a sign of admiration) When he rallied his first words were not, “I’m alive!” Instead he questioned “where’s my Nintendo.” and “Can I order a smoothie?” If I looked too worried he’d ask his doctor, “What’s her problem?”
That they came so close to falling off life’s precipice may or may not have been something they knew. They seemed to take illness and recovery in stride. However, there is absolutely no doubt in my mind that they comprehended that life was to be experienced. Both approached each day in anticipation of its possibility and promise.
"In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, against our will, comes wisdom through the awful grace of God."
It was impossible not to be touched by both their critical, life threatening illnesses and their infectuous outlook on life. Play; eat ice cream for breakfast; don’t worry about making your bed or cleaning your room. We’ll do whatever is needed for you to go to school, take a vacation, trick or treat even if you only stay out ten minutes. Yes - have friends over; of course, we can read one more book and no I don’t mind if you get glue, sparkles, play dough and paints all over the kitchen.
Standing here on earth with Zach and Sam somewhere beyond my reach – in a place where I cannot see, hear or touch them, I am drawn to the title of the article – “The afterlife of near death experience.” In the afterlife of each near death experience the warning was clear.
“Enjoy your child today –just in case he is not here tomorrow.”
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