Kayla Quote: "And may you always be a dreamer.
May your wildest dream come true."
Short Synopsis: Kayla is desperate and who wouldn't be with a failing heart in her body. She is tethered to a machine which pumps every bit of blood through her veins and organs. She is in chronic physical pain. She is depressed.
Long Story: Ok, I have had enough. God is not good. Why has he taken my beautiful, precious daughter and given her this much pain? I have this one memory of when she was 3 years old. She is standing in front of me and Mike as we sit on our couch. Across her beautiful face is a big smile. She is full of promise. She is happy and confident. Her sweet, fat legs are bare and I want to squeeze them with love. She turns around smartly and marches off to her room in exuberance. She is on a mission, a mission only a 3 year old can be on. She has no idea about death or defeat. She has no idea her heart is not perfect....but for this day, it is! It is beating well. It is her own heart and the doctors have given it great strength.
All of this is gone. Kayla is now an adult and full of pain, misery and fear. She is playing the waiting game. Will a new heart come along or will she languish and be taken by some quick infection? She is strong again...well as strong as one can be on an assisted device. She fights with everyone. She is difficult. Ha! These are the reasons she is still with us. She is now 26.
Kayla had dreams and they are torn away from her. She tells me in her quiet moments....Mom...I wanted a family. I wanted someone to love. I would like to have a child. I would like a career. I really like selling and marketing. All my dreams are gone.
I have a pile of lost dreams as well. I see the musical recorder on the top of my dresser. I love music. I love writing. I am good at a lot of creative things and I, too, have lost my dreams. I do not have the recognition that I seek. My family around me beats me down. They are afraid of my writing. They don't like the kiss and tell all that I am all about. They want to hide the family secrets. They are embarrassed by things.
I am not. I don't care what people know about my private life. I say it is universal, that all families have trials. Maybe they are different but they are there. Only my son Thomas supports me in what I am seeking...and that is a perfect written word, a beautiful musical note. I walk around with tunes in my head and I need to write down the notes. I need to write down the special rhyming word.
At least I have myself. I have belief in myself. I know why I am here. God made me a creative person, a chronicler, a journalist. I knew it when I was 10 and started that first journal, that silly little book with a clasp on it and a golden key to open it up. Those private words that no one was supposed to read. My journal had few words but they were inside of me.
I like to be alone, away from the crowd. I choose the crowd only when I want to or am lonely....but most of the time I am not lonely. I choose the crowd less and less. I control my time.
Babee brings in a small sparrow through the cat door. It is frightened and flapping and tired. Babee has cornered it next to the closed bedroom door. This is the room where Mike's parents are spending a few days. Babee is batting the poor bird who just about given up. It is playing its last survival card. It is playing dead. Babee sits for a brief moment.
I pick him up and toss him outside, much to his dismay. His eyes are big and black. He is clawing me but too bad! I lock the cat door for the moment. I pick up the tiny bird whose feathers are all a mess. I cup my hand gently around his body and his heart beats very fast. He eyes are watching me. I inspect him and he is not harmed. I carry him out to the wood pile and place him down gently.
I used to hate these birds. House sparrows are an interloper brought in from England at the turn of the century and released. How nice they thought back then. Not a song bird. Nothing special. Hurtful to the natural song bird population. Killer of blue birds and other more wanted birds. No matter.
Little Sparrow is alive and life is what I am all about this morning. In a few minutes, I watch it fly off. I open the cat door and in rushes Babee. He is sniffing all over to find the missing prey.
- - - - - - -
Today was dedication day for Frank Dolen. He was a wonderful man, a runner and dedicated community person. He has died of a rare disease and we are gathered to see the new bench at the old high school field. Frank used to pick up litter here from teen parties the night before. He would come early before "fun runs" and clean up the debris. Frank loved to run. This is the Wolfpit Running Club family filled with many wonderful people.
There are refreshments and I am choking on a drink and crying. I am very worn out by my Kayla journey. Mary Ellen, Bonnie, Liz and Kathy are all kind to me. I am crying for my suffering child.
Today is the day Kathy and I are supposed to go out on a long bike ride. Emotionally drained, I have no spirit to do this. I do not feel capable. We are going to bike 14 miles riding the actual course of the upcoming triathlon. I brought nuts, grapes and water. Kathy laughed at me and said I would not need all of that. She was right! We did the course in under an hour. It was the first time I felt I could actually still be in the race and finish it...my goal. I guess all those climbing steps at the hospital makes one fit!
Mike and I drive to his brother's house for supper. Kayla calls with her drama regarding the nurse who wouldn't come to help her for one and a half hours. Mike tries teaching Kayla Mindfullness-based Stress Reduction techniques over the phone to help her. The nurse could not be with her all the time. Kayla needed to help herself. We set boundaries with her to try to help.
Ha! Who are we to judge the girl with the four large holes into her body slushing blood through for life? I would be angry at the nurse too! Peace and future dreams to you my precious muffin...
- - - - - - - -
From: Mordechai Cohen
To: Stephanie Trolle
Sent: Sun, May 29, 2011 9:12:07 a.m.
Subject: Re: Your Mom
Hi.
Great to hear from you.
When is the triathlon?
My mom continues to make slow progress.
My aunt returned. She will be around for a couple of weeks.
Since my mom has been in a nursing facility and in and out of different hospitals, she no longer has any Medicare days left. Only Medicaid. Therefore, since al the LTAC facilities are in New Jersey, she won't be admitted. So now they have to hold her until a Medicaid bed opens in NY in a facility which meets her immediate needs. When my aunt or someone she recognizes is in the room she performs on command. But when no one is there, docs and nurses can come and go and they see nothing and they only go by the book (scans and stuff).
What's the latest on Kayla?
Thanks for keeping in touch.
All the best,
Mordechai
May your wildest dream come true."
Short Synopsis: Kayla is desperate and who wouldn't be with a failing heart in her body. She is tethered to a machine which pumps every bit of blood through her veins and organs. She is in chronic physical pain. She is depressed.
Long Story: Ok, I have had enough. God is not good. Why has he taken my beautiful, precious daughter and given her this much pain? I have this one memory of when she was 3 years old. She is standing in front of me and Mike as we sit on our couch. Across her beautiful face is a big smile. She is full of promise. She is happy and confident. Her sweet, fat legs are bare and I want to squeeze them with love. She turns around smartly and marches off to her room in exuberance. She is on a mission, a mission only a 3 year old can be on. She has no idea about death or defeat. She has no idea her heart is not perfect....but for this day, it is! It is beating well. It is her own heart and the doctors have given it great strength.
All of this is gone. Kayla is now an adult and full of pain, misery and fear. She is playing the waiting game. Will a new heart come along or will she languish and be taken by some quick infection? She is strong again...well as strong as one can be on an assisted device. She fights with everyone. She is difficult. Ha! These are the reasons she is still with us. She is now 26.
Kayla had dreams and they are torn away from her. She tells me in her quiet moments....Mom...I wanted a family. I wanted someone to love. I would like to have a child. I would like a career. I really like selling and marketing. All my dreams are gone.
I have a pile of lost dreams as well. I see the musical recorder on the top of my dresser. I love music. I love writing. I am good at a lot of creative things and I, too, have lost my dreams. I do not have the recognition that I seek. My family around me beats me down. They are afraid of my writing. They don't like the kiss and tell all that I am all about. They want to hide the family secrets. They are embarrassed by things.
I am not. I don't care what people know about my private life. I say it is universal, that all families have trials. Maybe they are different but they are there. Only my son Thomas supports me in what I am seeking...and that is a perfect written word, a beautiful musical note. I walk around with tunes in my head and I need to write down the notes. I need to write down the special rhyming word.
At least I have myself. I have belief in myself. I know why I am here. God made me a creative person, a chronicler, a journalist. I knew it when I was 10 and started that first journal, that silly little book with a clasp on it and a golden key to open it up. Those private words that no one was supposed to read. My journal had few words but they were inside of me.
I like to be alone, away from the crowd. I choose the crowd only when I want to or am lonely....but most of the time I am not lonely. I choose the crowd less and less. I control my time.
Babee brings in a small sparrow through the cat door. It is frightened and flapping and tired. Babee has cornered it next to the closed bedroom door. This is the room where Mike's parents are spending a few days. Babee is batting the poor bird who just about given up. It is playing its last survival card. It is playing dead. Babee sits for a brief moment.
I pick him up and toss him outside, much to his dismay. His eyes are big and black. He is clawing me but too bad! I lock the cat door for the moment. I pick up the tiny bird whose feathers are all a mess. I cup my hand gently around his body and his heart beats very fast. He eyes are watching me. I inspect him and he is not harmed. I carry him out to the wood pile and place him down gently.
I used to hate these birds. House sparrows are an interloper brought in from England at the turn of the century and released. How nice they thought back then. Not a song bird. Nothing special. Hurtful to the natural song bird population. Killer of blue birds and other more wanted birds. No matter.
Little Sparrow is alive and life is what I am all about this morning. In a few minutes, I watch it fly off. I open the cat door and in rushes Babee. He is sniffing all over to find the missing prey.
- - - - - - -
Today was dedication day for Frank Dolen. He was a wonderful man, a runner and dedicated community person. He has died of a rare disease and we are gathered to see the new bench at the old high school field. Frank used to pick up litter here from teen parties the night before. He would come early before "fun runs" and clean up the debris. Frank loved to run. This is the Wolfpit Running Club family filled with many wonderful people.
There are refreshments and I am choking on a drink and crying. I am very worn out by my Kayla journey. Mary Ellen, Bonnie, Liz and Kathy are all kind to me. I am crying for my suffering child.
Today is the day Kathy and I are supposed to go out on a long bike ride. Emotionally drained, I have no spirit to do this. I do not feel capable. We are going to bike 14 miles riding the actual course of the upcoming triathlon. I brought nuts, grapes and water. Kathy laughed at me and said I would not need all of that. She was right! We did the course in under an hour. It was the first time I felt I could actually still be in the race and finish it...my goal. I guess all those climbing steps at the hospital makes one fit!
Mike and I drive to his brother's house for supper. Kayla calls with her drama regarding the nurse who wouldn't come to help her for one and a half hours. Mike tries teaching Kayla Mindfullness-based Stress Reduction techniques over the phone to help her. The nurse could not be with her all the time. Kayla needed to help herself. We set boundaries with her to try to help.
Ha! Who are we to judge the girl with the four large holes into her body slushing blood through for life? I would be angry at the nurse too! Peace and future dreams to you my precious muffin...
- - - - - - - -
From: Mordechai Cohen
To: Stephanie Trolle
Sent: Sun, May 29, 2011 9:12:07 a.m.
Subject: Re: Your Mom
Hi.
Great to hear from you.
When is the triathlon?
My mom continues to make slow progress.
My aunt returned. She will be around for a couple of weeks.
Since my mom has been in a nursing facility and in and out of different hospitals, she no longer has any Medicare days left. Only Medicaid. Therefore, since al the LTAC facilities are in New Jersey, she won't be admitted. So now they have to hold her until a Medicaid bed opens in NY in a facility which meets her immediate needs. When my aunt or someone she recognizes is in the room she performs on command. But when no one is there, docs and nurses can come and go and they see nothing and they only go by the book (scans and stuff).
What's the latest on Kayla?
Thanks for keeping in touch.
All the best,
Mordechai
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