momof4everangelcarliejae
07-09-2007, 04:53 PM
I knew someday that my daughter would die. The first time that this became a reality was in the summer of 1999 and she had
developed a very high fever and was convulsing repeatedly. It was July and just past her second birthday. Her breathing labored
and her eyes starring off into space. For three hours the E.R. team worked to get her seizures to stop. It was after midnight and the
doctors could not even start an iv line. Her veins were so delicate that they just kept collapsing every time the needle was poked in.
Finally her heartbeat slowed down to regular and she was breathing normally. the doctor informed us that she was infected with a
virus and that any kind of fever and or illness even the small beginnings of a cold could and would bring on life threatening
seizures. This new development in our daughter's life made her even more fragile then she already was. Just a year prior, we had
become aware of her severe brain damage but because the specialist's were not predicting her future, we had much reason to hope.
We all did. Christmas came and as the new year came in my daughter's appetite decreased so much so that she would rather die
than swallow juice or a morsel of food. It was during one of her many hospital stays that the doctor came in and stated that Carlie
Jae was going to die and to be prepared for it. She would not eat and had failure to thrive as her weight had dropped substantially
and she was virtually skin and bones. She had lost all of her previous skills and was very weak. We had to make a serious and life
altering decision for our daughter. She could not swallow because the incessant seizures and medication had caused even more
brain damage. They said in order for Carlie Jae to live she would have to have a tube inserted in her stomach. After a very long
night of crying and worrying my husband and I consented to their pressing medical request. After surgery Carlie Jae's seizures
cleared up and almost disappeared for a period of four months or so, she was relatively healthy and we began to breathe easy.
Through the years, breathing easy while watching our child's health became a trial of stopping and starting for us. The next five
years of my life were completely changed with our expectations of our daughter and what life meant for us as a family. Carlie Jae
now was wheeled about and had to attend a special school, social workers, care givers and nurses were daily in our lives. I was on
alert 24 hours a day for fear of seizures, sickness and even thoughts of her death. In March my mother passed away from a long and
devastating illness, and while I was preparing for my Mother's memorial service my daughter became ill with a bladder infection
and strep throat. I woke up that Wednesday morning on March 23 knowing that my daughter was going die that day. She was
breathing irregularly and loudly and the sound echoed through every room in my home. Then it stopped, the sound of her, she
had stopped breathing I yelled out-loud Carlie and ran into her bedroom immediately started CPR and then phoned 911 the
operator informed me that i was not doing the CPR correctly and that only if I did it properly she would start breathing again. The
ambulance team took her immediately and spent twenty minutes working on my little girl. i knew she was dead and they tried for
two hours to revive her heart again. For weeks following her death, everyone told me that it was her time to go and that she was a
fragile angel. It is now two years later and those spoken words may be true but it is hard for me to accept. I absolutely loved being a
mother and a champion for my daughter and now I am faced living without this very important role. Slowly I am finding a new
path to tread but not without finding little tiny shards of glass on it while I walk.
Thank you so much for your time and for reading this
your friend Robyn
developed a very high fever and was convulsing repeatedly. It was July and just past her second birthday. Her breathing labored
and her eyes starring off into space. For three hours the E.R. team worked to get her seizures to stop. It was after midnight and the
doctors could not even start an iv line. Her veins were so delicate that they just kept collapsing every time the needle was poked in.
Finally her heartbeat slowed down to regular and she was breathing normally. the doctor informed us that she was infected with a
virus and that any kind of fever and or illness even the small beginnings of a cold could and would bring on life threatening
seizures. This new development in our daughter's life made her even more fragile then she already was. Just a year prior, we had
become aware of her severe brain damage but because the specialist's were not predicting her future, we had much reason to hope.
We all did. Christmas came and as the new year came in my daughter's appetite decreased so much so that she would rather die
than swallow juice or a morsel of food. It was during one of her many hospital stays that the doctor came in and stated that Carlie
Jae was going to die and to be prepared for it. She would not eat and had failure to thrive as her weight had dropped substantially
and she was virtually skin and bones. She had lost all of her previous skills and was very weak. We had to make a serious and life
altering decision for our daughter. She could not swallow because the incessant seizures and medication had caused even more
brain damage. They said in order for Carlie Jae to live she would have to have a tube inserted in her stomach. After a very long
night of crying and worrying my husband and I consented to their pressing medical request. After surgery Carlie Jae's seizures
cleared up and almost disappeared for a period of four months or so, she was relatively healthy and we began to breathe easy.
Through the years, breathing easy while watching our child's health became a trial of stopping and starting for us. The next five
years of my life were completely changed with our expectations of our daughter and what life meant for us as a family. Carlie Jae
now was wheeled about and had to attend a special school, social workers, care givers and nurses were daily in our lives. I was on
alert 24 hours a day for fear of seizures, sickness and even thoughts of her death. In March my mother passed away from a long and
devastating illness, and while I was preparing for my Mother's memorial service my daughter became ill with a bladder infection
and strep throat. I woke up that Wednesday morning on March 23 knowing that my daughter was going die that day. She was
breathing irregularly and loudly and the sound echoed through every room in my home. Then it stopped, the sound of her, she
had stopped breathing I yelled out-loud Carlie and ran into her bedroom immediately started CPR and then phoned 911 the
operator informed me that i was not doing the CPR correctly and that only if I did it properly she would start breathing again. The
ambulance team took her immediately and spent twenty minutes working on my little girl. i knew she was dead and they tried for
two hours to revive her heart again. For weeks following her death, everyone told me that it was her time to go and that she was a
fragile angel. It is now two years later and those spoken words may be true but it is hard for me to accept. I absolutely loved being a
mother and a champion for my daughter and now I am faced living without this very important role. Slowly I am finding a new
path to tread but not without finding little tiny shards of glass on it while I walk.
Thank you so much for your time and for reading this
your friend Robyn