Merry Christmas from our family to yours! :)
Photo by Jennifer
Thank you Jennifer Auby Rosenblad we love our photo! <3
Thursday, December 15, 2011
Wednesday, December 7, 2011
words from a sister's heart
12/6/11
Raven is my middle daughter, she is best at what ever she stets her mind and heart to,... she said she will not go on to college when she graduates,... but she is taking all the college tests and I found one of her rough drafts for a college app- I wanted to share it, it is a personal statement and .... here it is.
"My life has been made up of every moment I have lived and every decision I, and those around me, have made. The most influential and poignant moment in my short seventeen years was the birth of my little sister, Jeweliana, or Jewel for short. Jewel was born three months early, and though I was only six years old when she was born, I knew my life-and the life of my family would never be the same.
Jewel was born with cerebral palsy, and ten years has passed since she was born, she still can not sit up,roll,walk, ore even hold her head up by herself. Having a sister with a disability is heartbreaking, but I wouldn't trade her or the experiences our family has had for the world. I learned at a young age that life isn't fair, but you have to keep going. Jeweliana has taught me compassion, strength, kindness, persistence, and most important of all, she has taught me gratitude. Gratitude for all the things I have done, and can do. Jewel taught me to be grateful that I can get up and stand on my own two feet every morning and dress myself, gratitude for being able to brush my own teeth, and hold a pen in my own hand; these small mundane things, which she can only dream of one day being able to do.
I am forever grateful that-amidst the trails and tribulations that come with having a sister so dependent- I can call Jewel my baby sister, my inspiration , my hero. My name is Raven, and I am not the captain of the cheerleading squad, I am not class president, I have never won a science fair, but I have helped raise a child. I have attended hundreds of speech, physical and occupational therapy sessions, and I have taught my sister, against all odds, how to speak. While I haven't been to to a homecoming, or gone away to summer camp, I have volunteered with children with disabilities every summer. I've gotten to watch Jewel make her very first friend and say her first sentence; I have watched her live and thrive, and being her sister has made me the person I am today."
Raven is my middle daughter, she is best at what ever she stets her mind and heart to,... she said she will not go on to college when she graduates,... but she is taking all the college tests and I found one of her rough drafts for a college app- I wanted to share it, it is a personal statement and .... here it is.
"My life has been made up of every moment I have lived and every decision I, and those around me, have made. The most influential and poignant moment in my short seventeen years was the birth of my little sister, Jeweliana, or Jewel for short. Jewel was born three months early, and though I was only six years old when she was born, I knew my life-and the life of my family would never be the same.
Jewel was born with cerebral palsy, and ten years has passed since she was born, she still can not sit up,roll,walk, ore even hold her head up by herself. Having a sister with a disability is heartbreaking, but I wouldn't trade her or the experiences our family has had for the world. I learned at a young age that life isn't fair, but you have to keep going. Jeweliana has taught me compassion, strength, kindness, persistence, and most important of all, she has taught me gratitude. Gratitude for all the things I have done, and can do. Jewel taught me to be grateful that I can get up and stand on my own two feet every morning and dress myself, gratitude for being able to brush my own teeth, and hold a pen in my own hand; these small mundane things, which she can only dream of one day being able to do.
I am forever grateful that-amidst the trails and tribulations that come with having a sister so dependent- I can call Jewel my baby sister, my inspiration , my hero. My name is Raven, and I am not the captain of the cheerleading squad, I am not class president, I have never won a science fair, but I have helped raise a child. I have attended hundreds of speech, physical and occupational therapy sessions, and I have taught my sister, against all odds, how to speak. While I haven't been to to a homecoming, or gone away to summer camp, I have volunteered with children with disabilities every summer. I've gotten to watch Jewel make her very first friend and say her first sentence; I have watched her live and thrive, and being her sister has made me the person I am today."
Friday, December 2, 2011
aids / help/ nurses aid
12/2/11 Friday
We got our Christmas tree on Thursday.
Jewel and her sisters picked it out.
They are all happy :)
It is in the living room and it smells so good.
We will decorate soon.
It has been a mixed plate day;
Our O/T that used to work with Jewel is visiting the Islands.
It is so good to see her, we miss her so much!
We love you Crystal <3
Today we interviewed an aid who would come into our home to help out with Jewel.
The insurance company set this up.
It was very disappointing.
The candidate, had six months of schooling with first aid and CPR.
She has not worked long in this field.
She works with the elderly and has never worked with pediatrics.
She has never worked with children with cerebral palsy.
I was shocked.
Though the lady was nice, there is no way she could be of a help with no education or experience.
Each member of our family has been daily training over the past 10 1/2 years to be of help to Jewel.
We work with her day in and out.
We are all first aid and CPR -infant/child certified and some have adult certification as well.
We all have been to almost every therapy session, so we can learn and be of better help to Jewel.
How can the insurance think that someone with out specialized training come in and help with our daughter? How can a six month general nurses aid program equip some one to be a care giver to a child with is immobile with cerebral palsy with many other labels?!
The risk is high for aspiration during feeding and water for some one without training.
The risk to hurt Jewels hips is high with out the proper experience, education, understanding, and training.
The stakes are too high.
We have kept vigil over Jewel, keeping her safe, healthy and happy.
Good intentions are not enough.
One bad aspiration leads to infection leads to hospitalization .... not worth the risk!
We want to keep Jewel healthy, happy and medication / hospital free!
I am sorry if I sound ungrateful, it seemed like such a positive possibility for her and us but the gift was not satisfactory.
We got our Christmas tree on Thursday.
Jewel and her sisters picked it out.
They are all happy :)
It is in the living room and it smells so good.
We will decorate soon.
It has been a mixed plate day;
Our O/T that used to work with Jewel is visiting the Islands.
It is so good to see her, we miss her so much!
We love you Crystal <3
Today we interviewed an aid who would come into our home to help out with Jewel.
The insurance company set this up.
It was very disappointing.
The candidate, had six months of schooling with first aid and CPR.
She has not worked long in this field.
She works with the elderly and has never worked with pediatrics.
She has never worked with children with cerebral palsy.
I was shocked.
Though the lady was nice, there is no way she could be of a help with no education or experience.
Each member of our family has been daily training over the past 10 1/2 years to be of help to Jewel.
We work with her day in and out.
We are all first aid and CPR -infant/child certified and some have adult certification as well.
We all have been to almost every therapy session, so we can learn and be of better help to Jewel.
How can the insurance think that someone with out specialized training come in and help with our daughter? How can a six month general nurses aid program equip some one to be a care giver to a child with is immobile with cerebral palsy with many other labels?!
The risk is high for aspiration during feeding and water for some one without training.
The risk to hurt Jewels hips is high with out the proper experience, education, understanding, and training.
The stakes are too high.
We have kept vigil over Jewel, keeping her safe, healthy and happy.
Good intentions are not enough.
One bad aspiration leads to infection leads to hospitalization .... not worth the risk!
We want to keep Jewel healthy, happy and medication / hospital free!
I am sorry if I sound ungrateful, it seemed like such a positive possibility for her and us but the gift was not satisfactory.
Thursday, December 1, 2011
Pancakes for dinner
12/1/11 Thursday
Happy December first!
Woke up this morning to Jewel calling, "tree,tree, tree, tree, tree,...I want a tree, ... get up and get tree please, Grace wants tree, Makena wants tree, Raven wants tree!"
"Get tree now!"
At first I did not quite make out what she was saying and then I got it loud and clear.
One thing that is so wonderful about Jewel is that she is very persistent and will never give up or be broken.
So if by the fifteenth, "tree" if at first I did not understand, she would not give up until I got it. :)
I am thankful for this speech.
For dinner this evening I said, left overs for everyone, pick something and Jewel kept shouting something.
Was it, "bake cake?" Did she want me to bake a cake?
Jewel said, "No"
Was it, "blanket?" Was she cold?
Jewel said, "Not cold"
Back and forth I tried and tried, then I called Raven in to decipher, and still nothing.
Then she said, "look" and we looked around by the table and there was a Bisquick box with the image of a Pancake on it, and we yelled, "do you want pancake for dinner?!"
"Yes, ban cake".
Oh, the beauty of speech, to speak and be heard.
We still need to work on her "p" - this is evident and pancakes made a perfect dinner this first of December.
Happy December first!
Woke up this morning to Jewel calling, "tree,tree, tree, tree, tree,...I want a tree, ... get up and get tree please, Grace wants tree, Makena wants tree, Raven wants tree!"
"Get tree now!"
At first I did not quite make out what she was saying and then I got it loud and clear.
One thing that is so wonderful about Jewel is that she is very persistent and will never give up or be broken.
So if by the fifteenth, "tree" if at first I did not understand, she would not give up until I got it. :)
I am thankful for this speech.
For dinner this evening I said, left overs for everyone, pick something and Jewel kept shouting something.
Was it, "bake cake?" Did she want me to bake a cake?
Jewel said, "No"
Was it, "blanket?" Was she cold?
Jewel said, "Not cold"
Back and forth I tried and tried, then I called Raven in to decipher, and still nothing.
Then she said, "look" and we looked around by the table and there was a Bisquick box with the image of a Pancake on it, and we yelled, "do you want pancake for dinner?!"
"Yes, ban cake".
Oh, the beauty of speech, to speak and be heard.
We still need to work on her "p" - this is evident and pancakes made a perfect dinner this first of December.
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