Chapter 4: Living with a disability in a normal world

Chapter 4:

Living with a disability in a normal world

I always joke that God blessed me with cerebral palsy meaning that my family had the financial and physical resources to take care of my no matter how big or small my needs may have been, where it was spending all day in the NICU waiting Hours by me or spending hours of pray and call them as they waiting for me to come out of surgery but my family has always had the determination to see me through.
But I may say this because I have cerebral palsy means cerebral palsy witch I got at birth from lack oxygen to my brain I got everything I wanted and needed in my life, but that’s a huge misconception, being put out there because I not only had to work physically get a fabulous life that I wanted, but emotionally, too.
I’m blessed to say I had a “normal” childhood despite my disability; I grew up with able-bodied people in Aspen Colorado for 25 years
I am lucky enough to say all my schooling Per-k to 12th grade was with my friends who were not disabled; I have many favorite childhood memories
But my favorite school memory was skiing every Thursday and Friday afternoons with my class.
Now my reader maybe wondering how I skied. Well with a walker on skis Not only was the walker itself on skis, I was on a pair of skis in middle of the Walker, Too, I use this device to help me ski for about 15 years, and then tried skiing on my own for two years and then when I was 16 I gave up skiing for a new sport that all my able-bodied friends were doing Called Snowboarding to try this I had to figure out a way to snowboard with my disability, so because snowboarding was so new with the assistance of the adaptive ski program that I still ski with every weekend to this day they came up with a adaptive snowboard, now my reader may be wondering how in the world I snowboard and what does the snowboard look like, Let me explain it to you this way
My snowboard looks like a trick board the only difference between my snowboard and the rest of the able body snowboarder out there; is that there is a bar attached to my snowboard that I hang onto
Now my second favorite childhood school memory was being and staring in the all plays
At Aspen country Day school till eighth grade
Now despite my disability I have done a lot of traveling worldwide in my life
My three favorite places to travel and see were
Russia, Alaska Amsterdam and Sweden
My all-time favorite memory was in Russia.
Touching and berthing on the paintings at the hermitage for two days
Anther one of my favorite all-time travel memories with going to Alaska when I was seven on a cruise, one of the things we did was went flying over the ice in a helicopter and standing on the actual ice we went to a town in Alaska and ship was bigger than the town that was in Sitka
On my 13th birthday I spent the day at Vangoh museum
Which you think would be fun for a 13 year old girl who likes art but…did you know? A museum name after a famous artist there’s only two floors of art done by Van Gogh
My other favorite part of visiting Holland/Netherlands was all the beautiful Tulips, and see in all the cool windmills
But my all-favorite travel experience I have done in my life was cruising the Panama Canal at the age of 15 learning history as I watching the locks open and close
Now my home at the beach was always my favorite places and still day is and will always be on maybe surprised that I love the ocean
No I can’t swim, or Walk on the like a normal person can one of my favorite activity to do, is called ocean walking
Now what does ocean walking consists of? You May think it involved assistants well it dose two people on either side on me supporting me and simply walk in the ocean.
Walking against the current of the ocean it takes pressure off my joints, that said you may be the one thinking that against the ocean much is easier then walking with gravity, but let me tell you it’s not mainly because you have to wait to do it, I am walking in the sand to the sand moves with Current of the ocean
I have access to a beach house in the Bahamas I am not doing it on a public beach per-say I am doing it in a private inlet
People ask me all the time win why you like to go swimming in a pool it is much easier than having access to the ocean living in Colorado we don’t get access to the ocean on a daily basis
I answer people this way by saying you know how many people swim in go swimming at pools on a daily basis it’s much easier and safer for me with my disabletily to go into the ocean and just walk the ocean, on a side note doing my Recovery from my 06 back operation   one of the things that my pt had me do is go swimming in the pool I did not enjoy it because it’s not the ocean not to say I don’t enjoy hot tub more then pools.
I’m Laughing (as I write) because I feel that I’m germ fob when comes down to it
 I guess I’m a health person with a disability that doesn’t want to get sick or more injured that said, I’ve had so many broken bones in my life because of my disability Even have had bones broken in the operating room and straighten for me too, just so I could live life I want
Two of the scariest Operations had in my life one I don’t remember because I was so young at the time, open-heart surgery when I was weeks old
The other was when I was 18 and a half and that was a back operation that left me mobile with the use of a Walker. The first I was saying to the nurse’s after I woke up from my back surgery in 2006 is, “what Hospital is this? And why am I here?” the funny about that experience was I said that question and it was midnight and I remember it was raining I guess was so many pain pills for my back at that time I didn’t get realize what date or day it was; the nurse calmly stated to me that this was children’s hospital, I just had back surgery and quite frankly still to this day I don’t even remember going in for back surgery on June 14 2006 no wonder why I said what I said as I woke up from back Surgery Lucky to be writing this book as we speak now this said I am so lucky to have growing up in Aspen Colorado
Now my readers may be asking them self’s did I ever get tease for having a disability and the answer will shock you
Answer is no I never tease for having a disability now I think that has something to do with me growing up and being born in Aspen while as compared to Denver I probably would have been teased to this day I really have good friends who I Went to elementary school with
And some of my friends from high school are still my good friends
Now I wasn’t the type of kid to go sleep over at someone’s house or have play dates as I was disabled
But one of things my parents did do which was really cool, because of my birthday’s in the summer my parents would go all out for my birthday’s and invite all my friends and have all day birthday parties typically from noon to four but my mom would set up activities for each child to do as they came in have a picnic lunch underneath a tent in the backyard and go all out for my birthday parties to make it a lot of fun
As I got order I wanted smaller more intimate party
So one yeah for my 12th birthday we did it at the cooking school so in this case I was only allowed to amount of people
So now the bar was set that I throw the best birthday party in my class, so I remember one day at school trying to decide who invite to my cooking school birthday party, I remember still to this day walking down the path at Aspen country Day school to class with a friend of mine and the friend saying to me “win can I come to your birthday party?”
And me having to tell her no because I’m having it at the cooking school this year in Not my house
She Said to me “win you have the best birthday parties and I want to come!
Needless to say my friends have been really supportive despite my disability throughout my life…. They don’t seem to see me as a disabled person
Now I don’t care if you disable are or; I strongly fell you need supportive friends in your life to live most fabulous you want and being enjoy life every day and living life to the fullest.
…••••• chapter 5


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