One day when Annie was four years old (Annie is Ellie's little sister) she asked me, "Mom, does Ellie have a brain?"
"Yes. She can hear you when you talk to her. She is just unable to talk back to you."
Annie replied, "Oh, Mom, I talk to her all the time with my heart." This little statement pretty sums up how we communicate with Ellie.
Friday, November 22, 2013
Ellie Jane and the beginning of Ellie's Bells
My name is Ellie Jane. I was born on November 7th at 7:07 pm and my mom instantly said to herself, "This little girl is going to be a lucky little baby!" I came quickly into the world on a cold Fall day nineteen years ago. I was excited to go home and meet my older brother Zac. He and I became instant friends. Five weeks after I was born, I started having seizures. Doctors were unable to tell my mom and dad what was happening to me. I continued to develop slowly during my first year of life because of the seizure medications that I was on. However, I had a bright smile and I loved to laugh. I was such a great little baby girl.
After I turned one years old, the seizures that I had continually been having took a turn for the worse. I went to the hospital for yet another EEG and without getting too technical, the doctors told my parents that I had infantile spasms -- what a big word for a little baby! Within two weeks, everything that I had worked so hard to do as a baby slipped away. I quit moving, laughing, responding and smiling. My seizures got worse and the doctor visits and tests increased.
My mom and dad and big brother were so sad.
Now I am nineteen years old. I am still unable to do many things. I rely on my family for my care. They love me and I love them.
I whispered to my mother's heart a few years ago to begin Ellie's Bells. Since many of my hospital stays have revolved around the holidays, I wanted to give something to others who are staying in hospitals during the holidays as well. Since I am unable to move my feet very much on my own, my circulation isn't the best and I am known to always have cold toes. I love warm and fuzzy socks on my feet so I thought I would give warm socks to others to make their toes happy. I have pinned on an Ellie Bell to let you hear the beautiful sounds of Christmas.
I hope an Ellie Bell will make you smile.
After I turned one years old, the seizures that I had continually been having took a turn for the worse. I went to the hospital for yet another EEG and without getting too technical, the doctors told my parents that I had infantile spasms -- what a big word for a little baby! Within two weeks, everything that I had worked so hard to do as a baby slipped away. I quit moving, laughing, responding and smiling. My seizures got worse and the doctor visits and tests increased.
My mom and dad and big brother were so sad.
Now I am nineteen years old. I am still unable to do many things. I rely on my family for my care. They love me and I love them.
I whispered to my mother's heart a few years ago to begin Ellie's Bells. Since many of my hospital stays have revolved around the holidays, I wanted to give something to others who are staying in hospitals during the holidays as well. Since I am unable to move my feet very much on my own, my circulation isn't the best and I am known to always have cold toes. I love warm and fuzzy socks on my feet so I thought I would give warm socks to others to make their toes happy. I have pinned on an Ellie Bell to let you hear the beautiful sounds of Christmas.
I hope an Ellie Bell will make you smile.
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