My mothers wish was for my life to be "normal".
A family which includes an individual with cerebral palsy thinks - "this IS normal" as long as your child is not having a seizure, surgery or other neurological struggle.
Many do look upon us and say, "I don't know how do you do it?" Some days a pray for just a little NORMAL... today is normal. The kids went to school for the 4th week. The homework came home, the after school football game - the stress and drama of the football team loss - the unique wrapping of the motor disabled child to keep him warm and dry. Trying to figure out who will spend Saturday selling popcorn with the cub scouts with my middle son. Eating dinner, doing the dishes while verbally forcing showers and baths to my house full of boys. And finally - kids to bed.
Now there is a little time left for mom to complete some light work. This means I just may get to bed before 2am.... what is everyone talking about? Isn't this is normal? I think everyone else is doing the same, right? Where is the "not normal?"
Hope your day has been "NORMAL" too!
Tuesday, September 27, 2011
Friday, September 9, 2011
So - how was your day today?
Its Friday - the kids went back to school this week. My youngest child, with severe quadriplegic cerebral palsy was moved from a center based program (where all children at the school are disabled) to a regular education program, where just one room in the elementary school has disabled children.
It was a interesting experience changing from a school where many of the children are medically fragile. It is very quite to enter. Its nice, but like walking into a very nice nursing home. You still sometime get a nose full. It happens - its part of life for any severely disabled child or adult.
It was a interesting experience changing from a school where many of the children are medically fragile. It is very quite to enter. Its nice, but like walking into a very nice nursing home. You still sometime get a nose full. It happens - its part of life for any severely disabled child or adult.
This week I walked into a regular school, no nurse walking from room to room. Regular children, excited and running in the hallways. We worked hard for 9 years to get to some type of educational program that felt a little more "normal" and a little less "hospital" feeling.
But, now we are faced with a different problem. Imagine - you have a mosquito bite on your arm. It itches terribly, but you can not control a single muscle in your body.
What does this mean? This means: Can not control your voice -- so you can not speak a need to simply scratch. Any attempt just makes you APPEAR to scream without clear meaning or any intelligence. Can not walk -- so the idea of walking to a wall and rubbing the itchy location on a wall is out of the question. Can not move a finger or an arm - so they just fly wildly around as if they have their own agenda. What would your day be like? Do you feel human? Do others seem to treat you like a human?
How do you get others to understand your truly in there and understand to a conversational degree. I'm not saying my child is a complete brain. But, he knows discomfort - he knows FOOD - and knows how to yell for it. He knows how to be patient. He get's his point across fairly well - no need for true speech. However, as his mother, I still wish and pray for it every day.
Imagine - What it's like if every time you entered a room, no one spoke to you? What if everyone just looked at you and wondered if you could speak? What if people always questioned your intelligence? What if people never spoke to you - but always spoke about you - even when you where present?
What is it like to have someone tell people what you liked & what you didn't like - and what if they were not accurate? You came home and had to eat your least liked meals everyday - because someone else says it's your favorite.
What if everyone thinks your always cold - so they bring you blankets. Actually, you always feel hot and hate the blankets.
So how was you day today? No matter how stressful your day was at work, you still have choices YOU make, and decisions YOU make.
May these words help you if you did have a bad day today. Because even with all these things that happen to us on a regular basis - we are still thankful for what we do have every day. Its not much, but life could be worse.
What does this mean? This means: Can not control your voice -- so you can not speak a need to simply scratch. Any attempt just makes you APPEAR to scream without clear meaning or any intelligence. Can not walk -- so the idea of walking to a wall and rubbing the itchy location on a wall is out of the question. Can not move a finger or an arm - so they just fly wildly around as if they have their own agenda. What would your day be like? Do you feel human? Do others seem to treat you like a human?
How do you get others to understand your truly in there and understand to a conversational degree. I'm not saying my child is a complete brain. But, he knows discomfort - he knows FOOD - and knows how to yell for it. He knows how to be patient. He get's his point across fairly well - no need for true speech. However, as his mother, I still wish and pray for it every day.
Imagine - What it's like if every time you entered a room, no one spoke to you? What if everyone just looked at you and wondered if you could speak? What if people always questioned your intelligence? What if people never spoke to you - but always spoke about you - even when you where present?
What is it like to have someone tell people what you liked & what you didn't like - and what if they were not accurate? You came home and had to eat your least liked meals everyday - because someone else says it's your favorite.
What if everyone thinks your always cold - so they bring you blankets. Actually, you always feel hot and hate the blankets.
So how was you day today? No matter how stressful your day was at work, you still have choices YOU make, and decisions YOU make.
May these words help you if you did have a bad day today. Because even with all these things that happen to us on a regular basis - we are still thankful for what we do have every day. Its not much, but life could be worse.
Big thanks to Detroit Bike Week!
As I have mentioned, it is very hard to get families of disabled children to help with fundraising. Lets face it, they are busy with therapy, toileting or diapering their school age children, caring for children during and after surgeries… this list could go on forever.
So when Detroit Bike Week asked if helpCPkids.com could sponsor their beer tent for Detroit Bike Week events with proceeds going to help disabled children – needless to say we were thrilled and blessed for the support!
We had never done this type of event. Help Cerebral Palsy Kids Corporation learned the rules, was granted the license for the event – but we had no true experience in the work that would be involved or the amount of volunteers that would be needed. Thank you for the hard work from all our volunteers! We brought in $3,000 to help disabled children at Detroit Bike Week!
If you have not been to the event, it’s a must! The memorial wall and blessing of the bikes was amazing. The support for disabled children brought tears to our eyes. The live music, entertainment and fun – well you would will have to attend next year to experience this for yourself!
To sponsor the American Veterans Traveling Tribute memorial for 2012 – contact info@helpCPkids.com
So when Detroit Bike Week asked if helpCPkids.com could sponsor their beer tent for Detroit Bike Week events with proceeds going to help disabled children – needless to say we were thrilled and blessed for the support!
We had never done this type of event. Help Cerebral Palsy Kids Corporation learned the rules, was granted the license for the event – but we had no true experience in the work that would be involved or the amount of volunteers that would be needed. Thank you for the hard work from all our volunteers! We brought in $3,000 to help disabled children at Detroit Bike Week!
If you have not been to the event, it’s a must! The memorial wall and blessing of the bikes was amazing. The support for disabled children brought tears to our eyes. The live music, entertainment and fun – well you would will have to attend next year to experience this for yourself!
To sponsor the American Veterans Traveling Tribute memorial for 2012 – contact info@helpCPkids.com
Thursday, September 8, 2011
We have finally done it - we have went Internet viral!
Hello to all Cerebral Palsy friends and families out there! Most of you know - life is hard enough without all the additional things we must to in a single day to supplement the lives of our children and loved ones.
For those of you who do not know, we are a small 501c-3 non-profit group trying to make a difference in motor disabled children lives - one day at a time, one great cause at a time. We support educational technology needs, special needs equipment, disability playgrounds, home schooling and therapy needs such as conductive education.
Who am I? I am the president of Help Cerebral Palsy Kids Corporation, and the parent of a son with spastic quadriplegic cerebral palsy. I have a different out look on life someday... well most days! After 7 years of teaching my son and learning A LOT of patience - and the loss of my mother to cancer. I decided I had to gain some control as life seemed to be spiraling out of control. So... we adopted two additional children - ages 8 and 12 at the time. What was I thinking? Boys no less!
I tell people I have regained control and taken back my life. However, does that truly happen to any of us?
My entire family helps with small fundraisers - finding help is truly a difficult task. Families with disabled children sometimes seem hard to approach. Some are angry, confused or frustrated. Others are fairly normal. When you think of it this way, we are completely no different than your average family!
So welcome to our helpCPkids.com blog spot. We hope you enjoy it!
For those of you who do not know, we are a small 501c-3 non-profit group trying to make a difference in motor disabled children lives - one day at a time, one great cause at a time. We support educational technology needs, special needs equipment, disability playgrounds, home schooling and therapy needs such as conductive education.
Who am I? I am the president of Help Cerebral Palsy Kids Corporation, and the parent of a son with spastic quadriplegic cerebral palsy. I have a different out look on life someday... well most days! After 7 years of teaching my son and learning A LOT of patience - and the loss of my mother to cancer. I decided I had to gain some control as life seemed to be spiraling out of control. So... we adopted two additional children - ages 8 and 12 at the time. What was I thinking? Boys no less!
I tell people I have regained control and taken back my life. However, does that truly happen to any of us?
My entire family helps with small fundraisers - finding help is truly a difficult task. Families with disabled children sometimes seem hard to approach. Some are angry, confused or frustrated. Others are fairly normal. When you think of it this way, we are completely no different than your average family!
So welcome to our helpCPkids.com blog spot. We hope you enjoy it!
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