This is my interpretation of how I think Chloee looks now. Floating, flying, free... not in pain any more. happy i hope
"Some people only dream of angels, I held one in my arms."
Isn't she beautiful???
Wednesday, August 19, 2009
A Scrapbook Page for Chloee
This is my interpretation of how I think Chloee looks now. Floating, flying, free... not in pain any more. happy i hope
"Some people only dream of angels, I held one in my arms."
Isn't she beautiful???
Monday, August 17, 2009
Chloee's Life Story
This is the life story I wrote for Chloee when I spoke at a conference at Primary Children's Medical Center - where she died. It was a conference on hospice and palliative care.
In November of 2005, our world fell apart when our 7 week old daughter, Chloee, was admitted to Primary Children’s hospital with what we would soon find out was a genetic terminal illness still as of now of an unknown origin. She died at Primary Children’s Medical Center three months later at 5 months old. V. S. Yanovsky said, “I must warn you not to be surprised if I speak about the Dead as if they were alive.” And I will say the same. As I now share the story of my daughter, please keep in mind it is not a story to me. Chloee was my life and behind every photo that you see, I was there advocating and fighting, comforting, holding, and loving my girl. I gave her everything I had. “And in the telling of her story, I share what is most precious to me.” Chloee, nicknamed Chloster, Shoogs, ChloeeBug, and ChloeeBazoey, was born in September of 2005. She was absolutely beautiful and looked perfect in every way. Our first indication that something was wrong was a failed hearing test. According to her ABR tests, she was deaf. Our hope at that time was undiminished and we felt confident that we could raise and nurture a deaf child. We even signed up for and completed a baby sign language class. When Chloee was 7 weeks old, she developed some stridorous breathing problems and during surgery admission bloodwork, they found extreme problems with her bloodwork. And that was when our world fell apart and we were admitted to Primary Children’s. Truly what Terry Tempest Williams said is true: “An individual doesn’t get cancer – a family does.” I literally felt a sickness and multiple stabs to my heart each day for what was happening to Chloee. Mark Twain said “The mind has a dumb sense of vast loss – that is all. It will take mind and memory months and possibly years to gather the details and thus learn and know the whole extent of the loss.” That is how I felt during this time. I was so busy trying to learn the language and gather the details necessary that I couldn’t, on my own, come to a focused vision. She was put on tube feeding and the procedures and illnesses just seemed to roll one after the other as a reaction to some illness or problem. Things felt out of control. It felt like the only choice we had was to do the procedure or choose her death. And that became Chloee’s life -- tests and procedures and more tests and procedures. It was one test, surgery, and procedure after another. She was dealing with lactic acidosis, kidney failure, seizures, heart problems and various illnesses like rotavirus and RSV. Extremely frustrating for us was that the tests never could tell us anything. There was never any prognosis of any kind because they could not tell us what she had and they still cannot. The only prognosis we got was the day she was dying, they told us, “She’s going to die.” At this time, our hope revolved around finding a cure and saving her. Ovid said: “Where belief is painful, we are slow to believe.” And that is so true. It is so hard to believe that your child is going to die. Martha Whitmore Hickman said, “Anger is okay. Denial will hurt no one but me and those I love.” Chloee was a joy even though she was so sick. She loved looking at her mobile, being held, licking her chapsticked lips, and being cozy with blankets and pillows. She grew and with it came the cutest chubby cheeks and button chin. Her eyes were the bluest blue and her head was so fuzzy. She spent her first Christmas in the hospital and we came to love it on the infant unit. Many nurses there took exceptional care of Chloee and loved her.
After 50 days in the hospital, we made preparations for Chloee to come home. We were very unsure of our ability to care for her at home. She was on complicated continuous feeds, had a picc line, and had 12 different medications. One nurse in particular built up our confidence and assured us. I am so thankful for that nurse’s hope and belief in us. Suddenly, we had a new hope: the hope to take her home and not live at the hospital. Abraham Lincoln said, “The best thing about the future is it only comes one day at a time.” We were so nervous but so excited for this new hope. The day we went home was the happiest day of Chloee’s life. She smiled the whole way home. She was only home for 20 days because we were soon back with a picc line infection, but they were her happiest 20 days. The last month of her life we were in and out of the hospital. And in February of 2006, Chloee showed signs of heart failure. She kept throwing up. She couldn’t keep any food down. She was sweating through her clothes and blankets. We were admitted again this time somewhat by choice because we lacked confidence in the ability to keep her comfortable. We also lacked the support of a home hospice team. And we had come to feel at home and supported on the Infant Unit at the hospital. We felt the nurses there loved her and would help us keep her comfortable. In February of 2006, Chloee died from a combination of kidney failure and heart failure on the infant unit. Ruth Smeltzer said, “You have not lived a perfect day unless you have done something for someone who will never be able to repay you.” We were extremely well supported during Chloee’s death by a favorite nurse and aide. And I am thankful for Chloee’s nurses and support staff everyday of my life. Everyday we think of Chloee and how much we miss her. We would give anything to see her and talk to her, to watch her grow and for her to be here with us.
We love you Chloee!
In November of 2005, our world fell apart when our 7 week old daughter, Chloee, was admitted to Primary Children’s hospital with what we would soon find out was a genetic terminal illness still as of now of an unknown origin. She died at Primary Children’s Medical Center three months later at 5 months old. V. S. Yanovsky said, “I must warn you not to be surprised if I speak about the Dead as if they were alive.” And I will say the same. As I now share the story of my daughter, please keep in mind it is not a story to me. Chloee was my life and behind every photo that you see, I was there advocating and fighting, comforting, holding, and loving my girl. I gave her everything I had. “And in the telling of her story, I share what is most precious to me.” Chloee, nicknamed Chloster, Shoogs, ChloeeBug, and ChloeeBazoey, was born in September of 2005. She was absolutely beautiful and looked perfect in every way. Our first indication that something was wrong was a failed hearing test. According to her ABR tests, she was deaf. Our hope at that time was undiminished and we felt confident that we could raise and nurture a deaf child. We even signed up for and completed a baby sign language class. When Chloee was 7 weeks old, she developed some stridorous breathing problems and during surgery admission bloodwork, they found extreme problems with her bloodwork. And that was when our world fell apart and we were admitted to Primary Children’s. Truly what Terry Tempest Williams said is true: “An individual doesn’t get cancer – a family does.” I literally felt a sickness and multiple stabs to my heart each day for what was happening to Chloee. Mark Twain said “The mind has a dumb sense of vast loss – that is all. It will take mind and memory months and possibly years to gather the details and thus learn and know the whole extent of the loss.” That is how I felt during this time. I was so busy trying to learn the language and gather the details necessary that I couldn’t, on my own, come to a focused vision. She was put on tube feeding and the procedures and illnesses just seemed to roll one after the other as a reaction to some illness or problem. Things felt out of control. It felt like the only choice we had was to do the procedure or choose her death. And that became Chloee’s life -- tests and procedures and more tests and procedures. It was one test, surgery, and procedure after another. She was dealing with lactic acidosis, kidney failure, seizures, heart problems and various illnesses like rotavirus and RSV. Extremely frustrating for us was that the tests never could tell us anything. There was never any prognosis of any kind because they could not tell us what she had and they still cannot. The only prognosis we got was the day she was dying, they told us, “She’s going to die.” At this time, our hope revolved around finding a cure and saving her. Ovid said: “Where belief is painful, we are slow to believe.” And that is so true. It is so hard to believe that your child is going to die. Martha Whitmore Hickman said, “Anger is okay. Denial will hurt no one but me and those I love.” Chloee was a joy even though she was so sick. She loved looking at her mobile, being held, licking her chapsticked lips, and being cozy with blankets and pillows. She grew and with it came the cutest chubby cheeks and button chin. Her eyes were the bluest blue and her head was so fuzzy. She spent her first Christmas in the hospital and we came to love it on the infant unit. Many nurses there took exceptional care of Chloee and loved her.
After 50 days in the hospital, we made preparations for Chloee to come home. We were very unsure of our ability to care for her at home. She was on complicated continuous feeds, had a picc line, and had 12 different medications. One nurse in particular built up our confidence and assured us. I am so thankful for that nurse’s hope and belief in us. Suddenly, we had a new hope: the hope to take her home and not live at the hospital. Abraham Lincoln said, “The best thing about the future is it only comes one day at a time.” We were so nervous but so excited for this new hope. The day we went home was the happiest day of Chloee’s life. She smiled the whole way home. She was only home for 20 days because we were soon back with a picc line infection, but they were her happiest 20 days. The last month of her life we were in and out of the hospital. And in February of 2006, Chloee showed signs of heart failure. She kept throwing up. She couldn’t keep any food down. She was sweating through her clothes and blankets. We were admitted again this time somewhat by choice because we lacked confidence in the ability to keep her comfortable. We also lacked the support of a home hospice team. And we had come to feel at home and supported on the Infant Unit at the hospital. We felt the nurses there loved her and would help us keep her comfortable. In February of 2006, Chloee died from a combination of kidney failure and heart failure on the infant unit. Ruth Smeltzer said, “You have not lived a perfect day unless you have done something for someone who will never be able to repay you.” We were extremely well supported during Chloee’s death by a favorite nurse and aide. And I am thankful for Chloee’s nurses and support staff everyday of my life. Everyday we think of Chloee and how much we miss her. We would give anything to see her and talk to her, to watch her grow and for her to be here with us.
We love you Chloee!
Subscribe to:
Posts (Atom)
