Chloee’s Blog

Thursday, November 5, 2009

Happy Thanksgiving to Angel Chloee



We found this super cute little girl scarecrow for Chloee's grave.  It was so perfect with the blue eyes.
I wonder if her hair would be long like that now.  She'd be sooo big - 4 years old.
This Thanksgiving, I am not thankful for much but I will remember my little baby girl Chloee with love.
Missing you this Thankgiving pumpkin.
Love,
Mommy

Saturday, October 31, 2009

A pumpkin for you pumpkin



We made this pumpkin for you today Chloee.  We lit it and put it out for everyone to see on Halloween night.
We miss you Shoogs.  We wanted you here for this holiday.  I so wish I could go back to the one Halloween we had you here.
Happy Halloween in Heaven, pumpkin.

Sunday, September 13, 2009

Happy 4th Birthday Baby Girl!

Dear Chloee,
Happy 4th birthday baby girl. I can't believe how big you would be. We are missing out on so many things.... preschool, soccer, dance, and so many things I can't even imagine what.
We flew balloons to heaven today and we did random acts of kindness in your memory. We blew out candles on your princess cake and we decorated your grave. But most of all, we missed you pumpkin. I will spend the rest of my life missing you.
Happy Birthday Shoogs.
I Love you,
Mommy

Monday, September 7, 2009

Chloee's 4th Birthday Invitation


Happy 4th Birthday Chloee

We are having a memorial birthday party at her graveside 5pm on Sunday, September 13th, 2009 the day she would have turned 4 years old.

We will have a light dinner at the graveside with cupcakes.
Then, we will be performing a random act of kindness in her memory at the cemetery.

This year, our service project is doing Random Acts of Kindness in Chloee’s memory. Please consider doing a random act of kindness in honor of Chloee this week and leaving her card. See below or www.missfoundation.org for more information.



About the Kindness Project
www.missfoundation.org

The Kindness Project began in October of 1997 as a way for families to honor their deceased child and to help themselves heal. Now, years later, more than 500,000 Kindness Project cards have been used around the world to perform random acts of kindness in memory of a child, parent, friend, or spouse who died before their time.

The idea is to perform random, usually anonymous, acts of kindness in your community. A little card is left behind so that the person who benefits from the kindness knows that someone's life and death continues to matter. This beautiful movement has helped thousands of families to heal and find positive outlets for their overwhelming grief.

The History of the Kindness Project

Joanne’s daughter, Cheyenne, died in July of 1994. It was the worst day of her life. She never imagined laughing or ever experiencing joy again.

She began to seek out ways to keep Cheyenne's memory alive to her family and to the rest of the world: She wanted to create a legacy. She wanted people to know that Cheyenne existed and, more importantly, she wanted to help change the lives of others because of her presence on this earth.

So she set out on various missions of random kindness. On a daily basis, she looked for opportunities to reach out and do something unexpected and unusually kind for someone else. Most often, strangers were the recipients of these good deeds. She began to feel a sense of peace in knowing that Cheyenne was the reason for my enlightening.

The Kindness Project blossomed out of the extraordinary experiences she had while doing things for others. Because truly miraculous things happen to our spirit when we reach out to help others, she sought a way to share that movement with others.

It is her hope that through the Kindness Project, we can make incredible transformations within our communities, in our families, and in ourselves. Just imagine if every person touched by death would participate in helping to transform the world into a gentler and more altruistic world! What an impact this would have on so many levels!

The Kindness Project reminds others that our children, and other loved ones, are so very important to us that we are willing to extend the life and love of our child and share it with others! It is a legacy that transcends death. It is a legacy of love.

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 Slideshow

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!

Thursday, February 19, 2009

Chloee's Angel Day - From Lana

From Lana - I just wanted to let your family know how much we love you and how much we love Chloee and BreeElle soo much! Thank you for allowing us to be a part of their lives! This week of your angel day we have been thinking about you tons! We miss your sweet spirit! We love you!!