Kirsten Fielder
Memorial website in the memory of your loved one

I would like to share this poem, Kirsten's Nana wrote for us. 

Although I am not with you,
Our hearts still touch in love.
Each Day I watch upon you
looking down from up above.
My life was short but I was blessed
with family such as you.
The life we shared was filled with love,
it's oh so very true.
So, when you see a butterfly, 
flying high above,
be reminded I'm watching over you
and sending all my love.
And if it lands upon you
a smile it should bring,
its a touch I've sent down to you
with laughter on it's wing.

Kirsten's was thought to have hydrocephalus, this was found by ultra sound 5 days before she was born, at that time the Drs. weren't really sure what it was, but knew something would be wrong. So when she was born they whisked her away for tests and such, five days later she was home with me, with the simple diagnosis of hydrocephalus, but was told she would be lucky to live a week as she only had 10% of her brain mass. Four weeks later Kirsten had a shunt put in to control the hydrocephalus, and the Neurosurgeon gives me the new diagnosis of Hydranencephaly. Our Dr. told me how fatal this was for my daughter and told me that she would only live a year, To me that was an improvement, because just a month earlier I was told a week.
Kirsten developed many problems. She was legally blind, although she did learn to use what vision she did have very well. She had CP and orthopedic problems. She was on medications for her seizure disorder, for asthma, and for hypothyroidism. Kirsten was fed mainly via G-tube, but got some goodies (such as ice cream, and pudding) by mouth.
 She really showed all the Drs, that they are seldom right. She was a Very alert & happy, and had an attitude much like any other girl her age. She could stand in a stander and enjoyed being up on her feet, and sat in a wheelchair for mobility. She loved any movie that was Disney, and always laughed when she heard the Disney introduction.
She could use a computer with the help of a switch and would show anyone the attitude when she didnt get her way. Kirsten was mostly nonverbal, but could say "Hi, Mama, yes, Hoddy, Dada, I La (I love)" before her siezures got really bad in the last few years.  She could & WOULD definitely let her presence be known when she wanted attention. Kirsten was very playful and loved to hear the dogs barking at each other, and anything musical (especially piano music) She took breathing treatments twice a day as a preventative measure for her asthma. We had to stand over her to ensure that she kept her breathing mask on (if we left the room she would take it off and then laugh).
Kirsten has taught me a lot in life. She couldnt walk or talk (in actual words anyway) but she never complained. She was very happy and the only time she wasnt was when she was really sick. Her smile could light up any room and  got me through a lot of hard times. It is the one thing I miss the most.
When Kirsten was given the diagnosis of Hydranencephaly. I thought it was the end for us. I thought I wouldn't have her long, that is what all the information I read showed. But with research I was able to see that this diagnosis is not right. I have met many families with children who have hydranencephaly ( And all these children are very outgoing and alert.

Click here to see Kirsten Fielder's
Family Tree
Tributes and Condolences
Kirsten  / Dani Mom To Angel Pauli (hydran family )
Thinking of your sweet angel! 
Laughter and Love   / Julian Lacy (Friend of her Mother )
In 1991 God sent an angel to live among us There was no big lightning flash or commotion no real big fuss Baby Kirsten was born much to the delight of her loved ones But little did they know Baby Kirsten’s work had just begun See God knew the wor...  Continue >>
Just So Beautiful   / Gisela Bell (Hydran Family )
Sweet Angel Kirsten this is just so Beautiful xxxx
Nana's Poem   / Julie Moore (on-line Friend of family )
It is beautiful! I always enjoy reading about Kristen. She is such a little light and your whole family an inspiration. (((hugs))) for all of you. I know you miss her so much.
When tomorrow starts without me   / Dani Mom To ^Paul^ (friend)
When tomorrow starts without me, And I'm not there to see; If the sun should rise and find your eyes All filled with tears for me; I wish so much you wouldn't cry The way you did today, While thinking of the many things, We didn't get to say. I know ...  Continue >>
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Her legacy
More From The Huntsville Times Teen 'could light up room' with smile  
Friday, December 09, 2005
Times Staff Writer

Holly Fielder was told her newborn baby, diagnosed with the rare condition called hydranencephaly, wouldn't live a year. If she did live, the child would never be responsive, doctors said, and would never recognize family members. Kirsten Fielder, who died last Friday at age 14, would prove many predictions about her to be wrong. With hydranencephaly, the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. Kirsten, who was missing all but about 10 percent of her brain mass, couldn't walk or talk, and her vision was limited, said her mother. But she could laugh and smile, and she did respond to family members, including her younger brother, Noah Bowers, now 7 years old, who would push her wheelchair, help with her feeding tube and bring her dolls to her. "She would light up when she found out her Nana (her grandmother Doris Fielder) was there," said Fielder. There were many things that delighted Kirsten, causing her to break out in a big grin or kick or laugh out loud. "She loved anything Disney and she loved classical music and Christmas music and bells," said her mother. Kirsten was attracted by the color hot pink, and her eyes would follow the bright pink animals on her battery-powered mobile. "She touched a lot of people," said Holly Fielder. "Her smile and her eyes could light up a room, and her laughter was contagious. "She made you cherish everything." "It's a humbling experience to have a special needs child in your life," said Shelly Fielder, Holly Fielder's older sister. "It makes you appreciate everything you have. Everybody around Kirsten appreciated life more." Holly Fielder was 16 years old and single when she found out she was pregnant, and she had planned to give up her baby to a couple through private adoption. After Fielder was told of her baby's disability, though, she talked with the couple and her mother, and "We decided that we should bring Kirsten home with us. We felt that she was meant to be ours." Fielder believes that Kirsten, who grew only to the size of a 6- or 7-year-old, kept her life on track. "I think she helped me keep my life together," she said. "I was a teenager, rowdy, and I think she showed me where I needed to go with my life." Kirsten was always included in the family's activities, even taking a trip to Niagara Falls, said her stepfather, Kevin Bowers. "She touched my heart like you wouldn't believe," he said. "She really matured me. She made me grow up and mature and value life." The toughest challenge over the years was dealing with Kirsten's seizures. They could last for 10 to 20 seconds if under control, or for as long as 45 minutes and put Kirsten in the hospital. Despite needing special care, Kirsten would never become a burden, her mother said. "Our life without her is going to be tough."
Kirsten's Photo Album
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