I haven't blogged in such a long time! So here begins a resolution that I will start writing more frequently. On that note, I recently found a great quote by the Dalai Lama that I want to start saying when I wake up tomorrow morning:
"Everyday, think as you wake up, ‘today I am fortunate to have woken up, I am alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others, to achieve enlightenment for the benefit of all beings, I am going to have kind thoughts towards others, I am not going to get angry or think badly about others, I am going to benefit others as much as I can."'
Happy Thanksgiving!
Wednesday, November 25, 2009
Thursday, August 20, 2009
Patagonia
Patagonia is having their summer sale, but it ends TODAY! I just ordered some great organic cotton tees, but they also have pants for great prices if you don't mind buying them, before trying them on. This is not a legit advertisement, and I am not getting paid to promote Patagonia, I promise! I just thought I would spread a little retail luck!
Monday, August 17, 2009
Being a Ballerina
In the past, I've talked about how I used to take ballet, but I've never mentioned how grateful I am that the studio never once hesitated to let me take classes because I have Cerebral Palsy.
Recently, I read this article, published three years ago that talks about a ballet class for girls with Cerebral Palsy and other conditions located in Queens, New York. This class was established by Joann Ferrara,a physical therapist, because ballet studios were refusing to let these girls with Cerebral Palsy join.
Learn more or sign up for classes at, Dancing Dreams, Ferrara's therapeutic non-profit dance studio here.
In 2007, Ferrara published a pre-school level book entitled Ballerina Dreams, which shares the story of five little girls, with Cerebral Palsy, pursuing their dreams of dancing Ballet. Find it here.
The original article, along with a short video, was published in the New York Times and can be found here.
The post featured on Parent Dish can be found here.
Recently, I read this article, published three years ago that talks about a ballet class for girls with Cerebral Palsy and other conditions located in Queens, New York. This class was established by Joann Ferrara,a physical therapist, because ballet studios were refusing to let these girls with Cerebral Palsy join.
Learn more or sign up for classes at, Dancing Dreams, Ferrara's therapeutic non-profit dance studio here.
In 2007, Ferrara published a pre-school level book entitled Ballerina Dreams, which shares the story of five little girls, with Cerebral Palsy, pursuing their dreams of dancing Ballet. Find it here.
The original article, along with a short video, was published in the New York Times and can be found here.
The post featured on Parent Dish can be found here.
Friday, August 14, 2009
The Saga of Mr. Mistoffelees Look-alike
This little fellow will be joining my family as of the 31st of this month.
He currently resides in Brooklyn New York,
which is a 5 or 6 hour drive from my house.
Why are we adopting a kitten from so far away?
Answer: because either of fate or coincidence.
A telephone conversation with my uncle
about adopting cats.
During the telephone conversation,
my uncle gets an email
from his co-worker,
which explains that this kitten
was found outside his co-worker's apartment
and has lived in the apartment for two weeks.
He is very sweet and adorable, but
they can't keep him because they already have
three cats.
Possible names for him:
Eliot Brooklyn
Tucker (Tux) Eliot
Tux for short because he is a tuxedo cat.
I'm so excited and name suggestions would be much appreciated!
Sunday, June 14, 2009
Another Sweet Story
I just read this story in the Washington Post and in someways it reminds me of this book (cute, touching, and they are both about a delicious red strawberry).
Do you have any touching family stories that have been passed down through the generations?
Friday, June 12, 2009
NIH involved with Cerebral Palsy Awareness
The National Institute of Heath (NIH) has a number of Cerebral palsy resources and conducts a number of cerebral palsy related clinical trials every year. The various resources are extremely thorough and useful. I was especially happy when I came across a list of organizations, on the website, that support research and awareness of all things Cerebral Palsy.
1. The Cerebral Palsy international Research Foundation: Supports research for Cerebral Palsy and is currently selling "Hope Bracelets" to raise awareness for Cerebral Palsy because 100% of the proceeds go to benefit the efforts CPIRF. I love the look of these bracelets and i think I'm tempted to get one for myself.
2. Pedal With Pete: Their mission is to " raise funds for research to improve the quality of life for persons with Cerebral Palsy. "
I hope these resources will be helpful to someone!
1. The Cerebral Palsy international Research Foundation: Supports research for Cerebral Palsy and is currently selling "Hope Bracelets" to raise awareness for Cerebral Palsy because 100% of the proceeds go to benefit the efforts CPIRF. I love the look of these bracelets and i think I'm tempted to get one for myself.
2. Pedal With Pete: Their mission is to " raise funds for research to improve the quality of life for persons with Cerebral Palsy. "
I hope these resources will be helpful to someone!
Delovely Day
I hope you all had and are having a great Friday! Someone used the word "delovely" in my yearbook (yay for the end of school=), so I thought it would be an appropriate post title.
Anyhoo, in celebration of this absolutely delovely day I think you should read this amazing story!
In an instant, it will warm your heart and bring you to tears.
I promise!
Anyhoo, in celebration of this absolutely delovely day I think you should read this amazing story!
In an instant, it will warm your heart and bring you to tears.
I promise!
Friday, June 5, 2009
What?
This is one of those days where I just learn or come across a ton of information, and it's absolutely mind boggling:
1. It may be hard for me to get health insurance, later in life, because my Cerebral Palsy is a "pre-existing" condition. This is a hard thing to hear, especially for a 16 year old with big dreams.
2. There's a website that tells whether it's its a good day for iced coffee, depending on what the weather is like where you live
When I typed in my zip code it said "NO," but I'm hoping that that answer will change in a couple of weeks!
3. One more excitingly strange website is one that helps track lost luggage in interesting ways...
Described here by Real Simple Magazine as:
"If you’ve ever lost a bag to the black hole of airline-checked luggage, you’ll appreciate this Website. The site’s host, Luna Baloo, buys unclaimed luggage at auctions, photographs the contents, and posts the pictures―dirty socks and all. You may not spot your lost stuff, but you’ll sure get a chuckle out of other people’s." -Real Simple Magazine
I have to admit it's fun looking at the pics. of other people's stuff, but if it were my own stuff i think I would have a completely different opinion!
1. It may be hard for me to get health insurance, later in life, because my Cerebral Palsy is a "pre-existing" condition. This is a hard thing to hear, especially for a 16 year old with big dreams.
2. There's a website that tells whether it's its a good day for iced coffee, depending on what the weather is like where you live
When I typed in my zip code it said "NO," but I'm hoping that that answer will change in a couple of weeks!
3. One more excitingly strange website is one that helps track lost luggage in interesting ways...
Described here by Real Simple Magazine as:
"If you’ve ever lost a bag to the black hole of airline-checked luggage, you’ll appreciate this Website. The site’s host, Luna Baloo, buys unclaimed luggage at auctions, photographs the contents, and posts the pictures―dirty socks and all. You may not spot your lost stuff, but you’ll sure get a chuckle out of other people’s." -Real Simple Magazine
I have to admit it's fun looking at the pics. of other people's stuff, but if it were my own stuff i think I would have a completely different opinion!
Sunday, May 24, 2009
Monty Python: Hilarious or Rude
Many of the walks in Monty Python's "Ministry of Silly Walks" resembles that of someone with Cerebral Palsy. I have yet to decide if this is downright rude or hilarious.
This article from the UK Comedy Guide talks about the presence of disability in comedy.
What do you think?
Is it okay to use disabilities in comedy?
Does this increase awareness of all kinds of disabilities or is it just plain rude?
This article from the UK Comedy Guide talks about the presence of disability in comedy.
What do you think?
Is it okay to use disabilities in comedy?
Does this increase awareness of all kinds of disabilities or is it just plain rude?
Parachute and Pillows
In a little less than 24 hours I have become obsessed with this new group name Parachute (no poem intended)! But Seriously, they are amazing and i especially like their song "She is Love." it is absolutely brilliant.
Also, i was just on Etsy and I saw these adorable floor cushions made by Tiny Decor. They are designed for nurseries and playrooms, but I like them more for my own room. Plus, I was thinking how great they would be for physical therapy and/or back support.
Also, i was just on Etsy and I saw these adorable floor cushions made by Tiny Decor. They are designed for nurseries and playrooms, but I like them more for my own room. Plus, I was thinking how great they would be for physical therapy and/or back support.
Two Great Resources
These are two great resources that have been and continue to be very beneficial programs to people with Cerebral Palsy living in the Washington, D.C. area:
1. Cerebral Palsy Ability Center: Located in Chantilly, VA, CPAC provides therapeutic and educational support to kids living with Cerebral Palsy. Click here to visit their website, so you can read their mission statement, look at pictures, and find out about the various activities offered throughout the year.
2. Lift Me Up: Lift Me Up, located in Great Falls VA, provides the chance for children and adults with mental, physical, and emotional disabilities to improve the well-being through riding horses and interacting with the very compassionate staff. The website can be located by clicking here. You can also meet the horses by clicking here. I participated in Lift Me Up, for a couple of years, starting when i was six and I absolutely loved it!
Share your thoughts?
Do have any equally as great resources for people living with mental, physical, or emotional disabilities in your area?
1. Cerebral Palsy Ability Center: Located in Chantilly, VA, CPAC provides therapeutic and educational support to kids living with Cerebral Palsy. Click here to visit their website, so you can read their mission statement, look at pictures, and find out about the various activities offered throughout the year.
2. Lift Me Up: Lift Me Up, located in Great Falls VA, provides the chance for children and adults with mental, physical, and emotional disabilities to improve the well-being through riding horses and interacting with the very compassionate staff. The website can be located by clicking here. You can also meet the horses by clicking here. I participated in Lift Me Up, for a couple of years, starting when i was six and I absolutely loved it!
Share your thoughts?
Do have any equally as great resources for people living with mental, physical, or emotional disabilities in your area?
Wednesday, May 20, 2009
Awesome Blogs
The sidebar on the right has a list of awesome blogs with writings on everything from Cerebral Palsy to recipes from my favorite vacation spot: Ocracoke Island in North Carolina. I suggest you check them out if you want some great reads and inspiration (Just remember to click on the bold title, not the smaller post title because if you don't do that you won't be able to view the entire blog).
Enjoy! ------------>
(The arrow is to remind you that the blog list is on the right, or maybe it is just fun to make arrows on the keyboard)!
Enjoy! ------------>
(The arrow is to remind you that the blog list is on the right, or maybe it is just fun to make arrows on the keyboard)!
Friday, May 15, 2009
Passports and Postage Stamps
I haven't written on this blog for almost a month and that makes me sad. Hopefully, with summer coming, I will be able to write posts more frequently! My mind is filled with thoughts of summer vacation, so the next couple of post may be less related or not at all related to Cerebral Palsy. Anyways, about summer, I am preparing for a trip to the Dominican Republic this summer....
so I recently had to renew my passport. Oh, how I love the bureaucracy! Waiting in a line, feeling like my feet are about to fall off, with not a chair in sight, on a perfectly beautiful Friday afternoon was less than ideal.
Posted on the wall was an article stating "This Post Office Rated Best in County." Oh, the irony! The "clerk," affectionately called the passport making lady said she closed at 4 PM and it was quarter of 4, with six people in front of me (and my family). As I was standing there I thought, "Hey, let's go look at some cool stamps!" Sadly the cool stamps were behind the tall counter and are impossible to see for someone that's both vertically and visually challenged. So, I resulted to looking at the "uber cool" flag and liberty bell stamps.
As you can believe this wasn't that exciting because I can go home, open a drawer, and look at all the liberty and flag stamps that I want. Sigh, if only the machine had had these beautiful stamps. Finally, we (my family and I) were called up to the "clerk's" "desk" (i.e. card table), my picture had to be retaken because the background was too dark, and my picture looks like I'm a deranged clown.
Share your thoughts!
What are your summer plans?
Do you know of any great camps for kids with special needs?
Have you been to the Dominican Republic?
What's your best/worst experience with the bureaucracy?
so I recently had to renew my passport. Oh, how I love the bureaucracy! Waiting in a line, feeling like my feet are about to fall off, with not a chair in sight, on a perfectly beautiful Friday afternoon was less than ideal.
Posted on the wall was an article stating "This Post Office Rated Best in County." Oh, the irony! The "clerk," affectionately called the passport making lady said she closed at 4 PM and it was quarter of 4, with six people in front of me (and my family). As I was standing there I thought, "Hey, let's go look at some cool stamps!" Sadly the cool stamps were behind the tall counter and are impossible to see for someone that's both vertically and visually challenged. So, I resulted to looking at the "uber cool" flag and liberty bell stamps.
As you can believe this wasn't that exciting because I can go home, open a drawer, and look at all the liberty and flag stamps that I want. Sigh, if only the machine had had these beautiful stamps. Finally, we (my family and I) were called up to the "clerk's" "desk" (i.e. card table), my picture had to be retaken because the background was too dark, and my picture looks like I'm a deranged clown.
Share your thoughts!
What are your summer plans?
Do you know of any great camps for kids with special needs?
Have you been to the Dominican Republic?
What's your best/worst experience with the bureaucracy?
Thursday, April 23, 2009
Success and Sweet Comments
A few nights ago I had my IB personal project fair. Just in case you didn't know, this blog was specifically done for my high school IB personal project and I am proud to say it was a great success! I created a kind of scrapbook summary of my blog using Scraplog and displayed it during the fair. Two of my many favorite moments of the night were meeting a lady who helped start the United Cerebral Palsy in Washington State, (There are United Cerebral Palsys all over the country), and meeting a little girl who quickly told me that her grandmother has Cerebral Palsy and "is a very special person."
Thursday, April 2, 2009
Giveaway up at Big Piece of Cake
Saturday, March 28, 2009
Advantages to CP
In my opinion, having Cerebral Palsy has many advantages. Here are some advantages that I have or will experience(d):
1. I can get paid for participating in medical studies.
2. Even though I don't, I have permission to use the elevator at school.
3. I am the only one in my graduating class with Cerebral Palsy.
4. I can get one of those blue parking passes.
5. I am not old, but I have already had Botox.
6. I have an excuse to take Pilates Classes.
7. Some of the most influential people in my life have to do with my Cerebral Palsy (my therapist, my Pilates teacher, and my adapted P.E. teacher).
8. When I write poetry, I automatically have something to write about.
9. Playing the cello is not only fun, it's also theraputic!
10. I understand all the jokes made by Josh Blue.
I want to know...
Do you have a list of ten great things about having Cerebral Palsy?
1. I can get paid for participating in medical studies.
2. Even though I don't, I have permission to use the elevator at school.
3. I am the only one in my graduating class with Cerebral Palsy.
4. I can get one of those blue parking passes.
5. I am not old, but I have already had Botox.
6. I have an excuse to take Pilates Classes.
7. Some of the most influential people in my life have to do with my Cerebral Palsy (my therapist, my Pilates teacher, and my adapted P.E. teacher).
8. When I write poetry, I automatically have something to write about.
9. Playing the cello is not only fun, it's also theraputic!
10. I understand all the jokes made by Josh Blue.
I want to know...
Do you have a list of ten great things about having Cerebral Palsy?
Tonight is Earth Hour!
All you have to do is turn off your lights from 8:30-9:30 PM tonight Saturday, March 28, 2009. Why? Well, this is an election between the earth and global warming. By turning off your lights this apparently shows that you are voting for the earth. Whereas by keeping your lights on, you are supporting Global Warming. The results of the election will be counted at the Global Climate Change Conference 2009 in Copenhagen. To have your vote counted and your voice heard, be sure to REGISTER (it took me no time at all). I think this sounds like a great idea for both the earth and your family! I'm thinking of board games by candlelight! Also, if you want something interesting to read about Earth Hour try an article titled "Great Pyramids of Giza to Switch off for Earth Hour"
I hope you are all having a great Saturday!
I hope you are all having a great Saturday!
Saturday, March 21, 2009
"Teachable Moments"
When I heard about President Obama's inappropriate comment comparing his bowling skills to the special olympics I was very upset. This newly elected President who I have admired and cheered for over the last months insulted something that is related to a major part of my life. President Obama who is, in my opinion, a believer of hope and equality has contradicted his own ideals, which were spoken in his hundreds of speeches given throughout the campaign season. In my opinion Obama slipped up BIG TIME! Nevertheless, I am still an avid admirer and supporter of him. I also believe that everyone makes mistakes that cause a lot of harm to certain groups of people and, yes, this is wrong, but the truth is that we do not live in a perfect world. Instead I think we should take this comment and turn into something good and productive, a time to realize that everybody has their differences and that the world is an amazing place because of these differences. Also, that everybody's differences, whether external or internal, should be respected by all. In the words of Special Olympics Chairman Timothy Shriver, "This kind of language needs to be a teachable moment, I think, for our country." So, I think, in my opinion
we can all use President Obama's comment as a "teachable moment" whether its for ourselves or for another. On this issue I found this video of Good morning America's interview with Tim Shriver to be quite, to use his word, "affirming." Finally, this letter to Obama, written by Sarah from Class of 2008 (found at To the Max) is great and puts an uplifting perspective on this issue.
In other news..
Also, I want to wish you all a happy 2nd day of Spring! I am so excited for Spring I can hardly stand it! Oh, and just in case you missed it, yesterday was World Cerebral Palsy Awareness Day. Don't worry, if you forgot or didn't know, I was informed by email a day ahead. Thank goodness for Facebook and its Cerebral Palsy awareness groups!
Feel free to share your thoughts...
What are your perspectives, opinions, or thoughts on President Obama's comment?
Are you all as excited for Spring as I am?
and
Did you do anything special for CP Awareness Day?
we can all use President Obama's comment as a "teachable moment" whether its for ourselves or for another. On this issue I found this video of Good morning America's interview with Tim Shriver to be quite, to use his word, "affirming." Finally, this letter to Obama, written by Sarah from Class of 2008 (found at To the Max) is great and puts an uplifting perspective on this issue.
In other news..
Also, I want to wish you all a happy 2nd day of Spring! I am so excited for Spring I can hardly stand it! Oh, and just in case you missed it, yesterday was World Cerebral Palsy Awareness Day. Don't worry, if you forgot or didn't know, I was informed by email a day ahead. Thank goodness for Facebook and its Cerebral Palsy awareness groups!
Feel free to share your thoughts...
What are your perspectives, opinions, or thoughts on President Obama's comment?
Are you all as excited for Spring as I am?
and
Did you do anything special for CP Awareness Day?
Tuesday, March 10, 2009
Many Thanks
Many thanks to Angela and Sandy for their willingness to be guest contributers! I found Angela's personal description of being a "Hollander" very touching and Sandy's post that connected having Cerebral Palsy to the recent election extremely thought provoking.
If anyone would like to follow in their footsteps and become a guest contributer please feel free to email me at comptonann@gmail.com. I would love to hear from you!
If anyone would like to follow in their footsteps and become a guest contributer please feel free to email me at comptonann@gmail.com. I would love to hear from you!
Monday, March 9, 2009
Believe In Hopes and Your Dreams!
November 4, 2008--Election Day! Glued to CNN, I watched, with my husband, the results come in as many of you did. As the evening went on, I became more confident of my decision 18 months ago to support Barak Obama as my new President!
He Won! I cried! I fought back tears as he gave his Victory speech (although it was more a speech of Gratitude and an invitation for us all to unite as Americans to bring about change). I fought back tears to see the genuine hope in people's eyes as Obama talked of the future. He talked of working together to bring America back to being a strong and caring Nation, giving its citizens the power and the responsibility to help make that happen.
Where am I going with this, you might be thinking. I guess I want to talk about visualization. My visualizing that Obama would become our next President is similar to visualization of my own life. If you are readers of this blog, I have Cerebral Palsy. I have strived to overcome the barriers, misconceptions and the attitudes of the times!
Time has been good to me. Born in the late 40's, my folks were told I'd be a vegetable who would never sit up. Soon my parents realized this as not so an began to work with me. As far back as I can remember, I visualized success in whatever I wanted to do. That's the true blessing of going through childhood. One can dream and act out their future with no limitations.
I saw myself as attending high school, college, being employed and being married. I'm happy to say that I've accomplished each goal! Was it easy, no! Those limitations that a kid never sees; well they started appearing However, my desire and determination outweighed the negative feedback from those who only saw my wheelchair and heard my distorted speech.
After reaching my goals, I began searching for future chapters in my life. After college I got hired as a teacher's assistant, teaching students with disabilities. I then worked for the Metropolitan Center for Independent Living as Transition Coordinator, helping students with disabilities make the transition from High School and home to independent living in the "real" world.
Still relatively young, but burned out from fighting and advocating for the rights of people with disabilities, my husband and I moved out of the big City to a life in the country. I love it! To keep active I joined the Lions and the snowmobile Club. This baby, born to be a vegetable was living her life!
I wanted to do more, to give back! Then I found this neat tool on the internet. It allowed me to send beautiful cards via my computer! I had reached a new level of independence. Learning more about the effects of sending heartfelt greeting in minutes, prompted by a thought, I found a way to give back and help others reach their dreams. http://www.greetingcardschangelives.com has given me a future!
It is our inner self that makes us who we are. Obama found his inner self. He now wants to help each one of us to find that strength and belief that we can accomplish our goals and desires.
With the Election over, a real hope for the future ahead, we can now focus on a way to make a difference ~ Change a life!
He Won! I cried! I fought back tears as he gave his Victory speech (although it was more a speech of Gratitude and an invitation for us all to unite as Americans to bring about change). I fought back tears to see the genuine hope in people's eyes as Obama talked of the future. He talked of working together to bring America back to being a strong and caring Nation, giving its citizens the power and the responsibility to help make that happen.
Where am I going with this, you might be thinking. I guess I want to talk about visualization. My visualizing that Obama would become our next President is similar to visualization of my own life. If you are readers of this blog, I have Cerebral Palsy. I have strived to overcome the barriers, misconceptions and the attitudes of the times!
Time has been good to me. Born in the late 40's, my folks were told I'd be a vegetable who would never sit up. Soon my parents realized this as not so an began to work with me. As far back as I can remember, I visualized success in whatever I wanted to do. That's the true blessing of going through childhood. One can dream and act out their future with no limitations.
I saw myself as attending high school, college, being employed and being married. I'm happy to say that I've accomplished each goal! Was it easy, no! Those limitations that a kid never sees; well they started appearing However, my desire and determination outweighed the negative feedback from those who only saw my wheelchair and heard my distorted speech.
After reaching my goals, I began searching for future chapters in my life. After college I got hired as a teacher's assistant, teaching students with disabilities. I then worked for the Metropolitan Center for Independent Living as Transition Coordinator, helping students with disabilities make the transition from High School and home to independent living in the "real" world.
Still relatively young, but burned out from fighting and advocating for the rights of people with disabilities, my husband and I moved out of the big City to a life in the country. I love it! To keep active I joined the Lions and the snowmobile Club. This baby, born to be a vegetable was living her life!
I wanted to do more, to give back! Then I found this neat tool on the internet. It allowed me to send beautiful cards via my computer! I had reached a new level of independence. Learning more about the effects of sending heartfelt greeting in minutes, prompted by a thought, I found a way to give back and help others reach their dreams. http://www.greetingcardschangelives.com has given me a future!
It is our inner self that makes us who we are. Obama found his inner self. He now wants to help each one of us to find that strength and belief that we can accomplish our goals and desires.
With the Election over, a real hope for the future ahead, we can now focus on a way to make a difference ~ Change a life!
Saturday, March 7, 2009
More Perspective
As Angela said, my hope is that all fellow "Hollanders" enjoy running through the beautiful red poppies.
Friday, March 6, 2009
Special Momma Guest Post
We arrived in Holland 6 years and 1 day ago. My pregnancy was normal -- we were blissfully unaware of what was coming. Like other parents we exptected our baby to arrive healthy and to be able to bring him home a few days after he was born. That wasn't the case. Suddenly, like a scene from some medical drama on TV our lives changed forever. Our son Jack Riley was born at 25 weeks gestation and almost didn't survive. Almost. He was a fighter from day one. We were thrown into life in the Neonatal Intensive Care Unit for 3 long months where Jack endured many medical treatments and surgeries. There were times we didn't know if he would make it.
Jack came home from the hospital and never looked back. He grew stronger and reached milestones we didn't know if he would ever achieve. He was diagnosed with Cerebral Palsy at 2 years of age. We read and researched and learned everything we could.
Nothing prepares parents for having a disabled child. Reaching out to other moms and dads helped so much. Joining online support groups, reading blogs and connecting with local resources (like early intervention) helped us realize that "Holland" wasn't so bad. In fact, Holland is a place where we celebrate the "inchstones" instead of reaching for milestones. And you better believe when one of those far off milestones is reached there's a party....there are cheers and heart felt congratulations from those that truly get it!
Living in Holland with my family has truly been a blessing. I wouldn't change a thing. Jack wouldn't be the awesome kid he is today. Of course I would take away the pain and hope our children never have to go through another procedure or surgery but I wouldn't take away their spirits.
I did not move to Holland by choice. There are days when it's tough living here. Really tough! But the beauty of this place is amazing. We're here and we're not leaving any time soon! To my fellow "Hollanders" -- i am grateful for your friendship and support. I love celebrating your children and sharing this life together. Thank you for being a part of mine.
Angela Wilhelm
Jack is a former 25 week preemie who just turned 6 years old yesterday! You can see Jack's progress through the years at our blog. Thank you for reading!
Saturday, February 21, 2009
An Interesting Perspective
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Dear Dwell #1
I received this letter a while ago, but I just thought I would post it, along with my reply, and see if anyone else had any suggestions
"I am the father of a 4 year old boy who suffers from C.P.
He just lives life to the max. He is affected down his left hand side and has no use of his left arm.It would be great to here how life has progressed for kids your age as i often worry how he will cope as he gets older.Especially when he hits his teenage years.
We recently went to meeting which gave us great insperation meeting other parents and being able to talk about the things you bottle up.
My biggest task at the moment is trying to find him a bike . This is how i came across this site. He was broken hearted when Santa didnt bring his bike this year. I need to find a bike with a training pole and suitable support......,. any ideas?
I look forward to hear from you in the near future."
"I am so glad you replied to my post! Thank you so much!
As a matter of fact I know just the think that could help your son with his bike riding. A couple of summers ago I attended the Stride Bike Camp http://www.stride.org/sports/biking/ near my grandparent's house in Albany, NY. It is a week long day camp and it has many locations around the US. Anyways, they teach kids with disabilities to learn how to ride bikes with these really cool bikes that involve rollers instead of wheels. By the end of the week I was riding a normal bike....it was so thrilling.
Anyways, after the camp they recommend specific bikes for each person. They also recommend types of training poles to fit on the end of bikes for extra support. Right now I'm out of twown, but when I get back home I'll try to send you some pictures of my adapted bike. I got the traininig poll from the program, but I'm sure your could email them on some ideas on where to get one for your son.
One more thing, is it okay if I post your email on my blog? I think it could get some interesting feedback!
The blog URL is http://dwellcp.blogspot.com/ . Don't be suprised if it looks very bare! It's just getting started! If you would like to be added as a contributer just tell me, and I will email you a request.
I hope all this helps! I can't wait to hear how it all works out!"
Any suggestions?
"I am the father of a 4 year old boy who suffers from C.P.
He just lives life to the max. He is affected down his left hand side and has no use of his left arm.It would be great to here how life has progressed for kids your age as i often worry how he will cope as he gets older.Especially when he hits his teenage years.
We recently went to meeting which gave us great insperation meeting other parents and being able to talk about the things you bottle up.
My biggest task at the moment is trying to find him a bike . This is how i came across this site. He was broken hearted when Santa didnt bring his bike this year. I need to find a bike with a training pole and suitable support......,. any ideas?
I look forward to hear from you in the near future."
"I am so glad you replied to my post! Thank you so much!
As a matter of fact I know just the think that could help your son with his bike riding. A couple of summers ago I attended the Stride Bike Camp http://www.stride.org/sports/biking/ near my grandparent's house in Albany, NY. It is a week long day camp and it has many locations around the US. Anyways, they teach kids with disabilities to learn how to ride bikes with these really cool bikes that involve rollers instead of wheels. By the end of the week I was riding a normal bike....it was so thrilling.
Anyways, after the camp they recommend specific bikes for each person. They also recommend types of training poles to fit on the end of bikes for extra support. Right now I'm out of twown, but when I get back home I'll try to send you some pictures of my adapted bike. I got the traininig poll from the program, but I'm sure your could email them on some ideas on where to get one for your son.
One more thing, is it okay if I post your email on my blog? I think it could get some interesting feedback!
The blog URL is http://dwellcp.blogspot.com/ . Don't be suprised if it looks very bare! It's just getting started! If you would like to be added as a contributer just tell me, and I will email you a request.
I hope all this helps! I can't wait to hear how it all works out!"
Any suggestions?
Tuesday, February 3, 2009
Random Was Its Name-O
Yup, that's exactly what this post is: random! Though I think random is the most entertaining!
Well, today I had to turn in an English essay ("writing assignment") that metaphorically compared myself to something. At first I chose chicken pox, but then i thought ewww and changed to something a lot sweeter the glorious Golden Retriever. I wanted to somehow include something about having Cerebral Palsy so here is how I did it:
"My seemingly biggest physical weakness has surprisingly come as my biggest physical strength. See, as a young pup I developed a limp that kept me from such activities as rough housing around with a ball at the dog park. This limitation that at first brought much sadness has in fact blossomed into much joy. This is because my owner signed me up as a service dog. I really appreciate the opportunity to participate in this experience because of my ability to be empathetic towards both humans and other dogs. I now care for humans at places that are as dear to me as my favorite fire hydrant.
At my first favorite place, where humans look worn and aged, I clutch the newspapers of the residents in my jaws and bring them to their bedsides, in return for a pat on the head and a chuckle. When I visit the place where humans are attached to lots of tubes and machines, I curl up next to them and quietly listen to their problems. They, of course, pretend I am listening because all they know is that I am a dog, but what they do not know is that I listen and sympathize with everything they’re saying."
In other news, topics, things...
Later this week I am planning to write a bio for this blog, but I think I'll start by given my 25 things list via Facebook
Something Borrowed, Something Blue, and Something New
1. Something Borrowed: Some books and clothes!
2. Something Blue: My straight leg, skinny Lucky Brand Jeans (They were on sale!=D)
3. Something New: The new plate rack that I bought on Etsty to hold random junk! Yay! I love it!
Now I'm done with the theme, so it's time to write about stuff about myself that is sadly without a real theme!=)......
4. I was supposed to be a Valentine's Day baby.
5. Feta cheese and collard greens are delicious.
6. I don't trust people easily.
7. This year I'm trying to be more optimistic.
8. Even though I'm very liberal, I think abortion is wrong.
9. Someday I would love to be fluent in Spanish.
10. I think a life filled with friends and happiness is much more important than success, or did I just described the definition of success?
11. I would love to go to an all girl's college. Don't ask me why....I don't even know!
12. I've known most of my friends for years and i love them all!
13. My religion is very important to me, but I won't try to force my beliefs on other people.
14. I'm afraid of the dark and crazy serial killers.
15.I'm a romantic who hopes she doesn't grow up to be a crazy cat lady because that would suck!
16. I think hippies are the coolest people ever!
17. I'm terribly afraid of snakes and the dark!
18. I could have gotten my permit in May and I still haven't.
19. I would consider myself a writer, but i have no idea how to use a comma even if my life depended on it.
20. I think Jackie Du Pre is the most inspirational person ever!
21. I think all Fanny Packs should be burned!
22. I would love a red kitchen aide mixer or a waffle maker (homemade paninis yummy!)...at age 16...ahahaha
23. I would love to have a temporary Henna tattoo on my hand.
24. I laugh at almost anything and love when I get deliriously happy!
25. I have very expensive tastes!
Well, today I had to turn in an English essay ("writing assignment") that metaphorically compared myself to something. At first I chose chicken pox, but then i thought ewww and changed to something a lot sweeter the glorious Golden Retriever. I wanted to somehow include something about having Cerebral Palsy so here is how I did it:
"My seemingly biggest physical weakness has surprisingly come as my biggest physical strength. See, as a young pup I developed a limp that kept me from such activities as rough housing around with a ball at the dog park. This limitation that at first brought much sadness has in fact blossomed into much joy. This is because my owner signed me up as a service dog. I really appreciate the opportunity to participate in this experience because of my ability to be empathetic towards both humans and other dogs. I now care for humans at places that are as dear to me as my favorite fire hydrant.
At my first favorite place, where humans look worn and aged, I clutch the newspapers of the residents in my jaws and bring them to their bedsides, in return for a pat on the head and a chuckle. When I visit the place where humans are attached to lots of tubes and machines, I curl up next to them and quietly listen to their problems. They, of course, pretend I am listening because all they know is that I am a dog, but what they do not know is that I listen and sympathize with everything they’re saying."
In other news, topics, things...
Later this week I am planning to write a bio for this blog, but I think I'll start by given my 25 things list via Facebook
Something Borrowed, Something Blue, and Something New
1. Something Borrowed: Some books and clothes!
2. Something Blue: My straight leg, skinny Lucky Brand Jeans (They were on sale!=D)
3. Something New: The new plate rack that I bought on Etsty to hold random junk! Yay! I love it!
Now I'm done with the theme, so it's time to write about stuff about myself that is sadly without a real theme!=)......
4. I was supposed to be a Valentine's Day baby.
5. Feta cheese and collard greens are delicious.
6. I don't trust people easily.
7. This year I'm trying to be more optimistic.
8. Even though I'm very liberal, I think abortion is wrong.
9. Someday I would love to be fluent in Spanish.
10. I think a life filled with friends and happiness is much more important than success, or did I just described the definition of success?
11. I would love to go to an all girl's college. Don't ask me why....I don't even know!
12. I've known most of my friends for years and i love them all!
13. My religion is very important to me, but I won't try to force my beliefs on other people.
14. I'm afraid of the dark and crazy serial killers.
15.I'm a romantic who hopes she doesn't grow up to be a crazy cat lady because that would suck!
16. I think hippies are the coolest people ever!
17. I'm terribly afraid of snakes and the dark!
18. I could have gotten my permit in May and I still haven't.
19. I would consider myself a writer, but i have no idea how to use a comma even if my life depended on it.
20. I think Jackie Du Pre is the most inspirational person ever!
21. I think all Fanny Packs should be burned!
22. I would love a red kitchen aide mixer or a waffle maker (homemade paninis yummy!)...at age 16...ahahaha
23. I would love to have a temporary Henna tattoo on my hand.
24. I laugh at almost anything and love when I get deliriously happy!
25. I have very expensive tastes!
Monday, January 26, 2009
Making Connections
I'm a person who loves to make connections! Whether it be between people, topics, or things I'm learning. This is why I wanted to do a post on Audrey Hepburn today. Why? Well, even though she's known for her unconquerable talent as an A-list actress, Audrey Hepburn is also known for her dedicated work with UNICEF. As, you may know by reading my blog I love supporting and writing about charities and because of this I'm a huge fan of Audrey Hepburn and her work with UNICEF.
Talking about charities and such, check out this AMAZING charity, Kelly's Kidz, that gives assistant to families of kids with Special Needs (including Cerebral palsy).
Did you know...
That Audrey received a thank you letter from Noble-Peace Prize winning activist Elie Wiesel for co-hosting the gala "A Tribute to Peace from Oslo with Gregory Peck?"
Or
That Audrey visited such countries as Sudan on behalf of Unicef?
You can find amazing photographs and pieces of Audrey's work with UNICEF in this fantastic interactive book The Audrey Hepburn Treasures.
"It would be nice to be an expert on education, economics, politics, religion, traditions, and cultures and I am none of these things. But I am a mother and will travel."-Audrey Hepburn
Saturday, January 24, 2009
A Little Early
So, I was going to wait a few days to post number 3 and 4 of my favorite exercise equipment, but after finding the greatest website I couldn't resist posting at least number 3.
3. Exercise Ball: Oh, the exercise ball, great for sore backs and such. A large variety can be found here.
The website featuring the exercise balls had some other great products as well. Here are two of my favorites:
I've heard of Bilibo's, but it never occurred to me how great they could be when used in therapy.
Learning to ride a bike can be very difficult for kids with Cerebral Palsy because balancing is especially challenging. As a result, the Skuut™ Balance Bike would be the perfect solution to help your child learn to balance before actually learning how to ride a bike!
3. Exercise Ball: Oh, the exercise ball, great for sore backs and such. A large variety can be found here.
The website featuring the exercise balls had some other great products as well. Here are two of my favorites:
I've heard of Bilibo's, but it never occurred to me how great they could be when used in therapy.
Learning to ride a bike can be very difficult for kids with Cerebral Palsy because balancing is especially challenging. As a result, the Skuut™ Balance Bike would be the perfect solution to help your child learn to balance before actually learning how to ride a bike!
A Potential Routine: Part 1
Exercise is important for anybody, but it is even more important for people with Cerebral Palsy. Although the actual event of me exercising either rarely or never happens...I confess. So, I'm writing this post tonight with the hopes of inspiring myself to put only FIVE minutes of exercise into my daily routine, but most importantly I'm inspiring you, the reader of this blog, to do the same! Don't worry there will be no exercises shown today, just a display of the fancy schmanzy equipment! Conclude with: THAT WAS DRAMATIC!
***As always, I am not a doctor so please consult with yours before you take any of my advice!
Here it goes:
1. Yoga Mat: You are going to need a comfortable surface on which to do your exercising. Personally, yoga mats work best for me! I've seen them being sold at thrift shops for around five bucks! There are some pretty good deals on websites like Amazon. For the adventurous types, there may be some steals/deals on your local Craigslist.
2. Resistance Band: Does anybody else think these smell like fresh baked chocolate chip cookies, or am I just weird? These are great for stretching out tired, sore muscles (As always check with your doctor first before using a resistance band). Anyways, I just found a great deal on resistance bands: one band for 1-2 dollars depending on the intended resistance.
More to come later!
***As always, I am not a doctor so please consult with yours before you take any of my advice!
Here it goes:
1. Yoga Mat: You are going to need a comfortable surface on which to do your exercising. Personally, yoga mats work best for me! I've seen them being sold at thrift shops for around five bucks! There are some pretty good deals on websites like Amazon. For the adventurous types, there may be some steals/deals on your local Craigslist.
2. Resistance Band: Does anybody else think these smell like fresh baked chocolate chip cookies, or am I just weird? These are great for stretching out tired, sore muscles (As always check with your doctor first before using a resistance band). Anyways, I just found a great deal on resistance bands: one band for 1-2 dollars depending on the intended resistance.
More to come later!
Just As Good As Vogue...
Apparently, there is a magazine of all things CP called "Cerebral Palsy magazine." Subscriptions are available in many ways and forms: they can be ordered by mailing in an order form, digital forms of each issue are available for purchase on a CD, and there are FREE PDFs of each issue available online. I might get my own subscription and if I do I'll post about it. Though the magazine, in my opinion, does look very informative with covers featuring prominent figures in the Cerebral palsy world.
Saturday, January 17, 2009
The Rolling Exhibition
Thanks to my dear friend Molly for providing the idea for this post!
These pictures are taken by Kevin Connolly, who is currently a student at Montana State University, a talented photographer, and an avid skier. Oh, and, just as a side note, Kevin was born without legs, which gives him the ability to take these absolutely AMAZING photographs at such unusual and interesting perspectives. Seriously, talk about making lemonade when life gives you lemons AND dwelling in the possibility of a seemingly negative situation! His work is called the Rolling Exhibition and can be found here.
These pictures are taken by Kevin Connolly, who is currently a student at Montana State University, a talented photographer, and an avid skier. Oh, and, just as a side note, Kevin was born without legs, which gives him the ability to take these absolutely AMAZING photographs at such unusual and interesting perspectives. Seriously, talk about making lemonade when life gives you lemons AND dwelling in the possibility of a seemingly negative situation! His work is called the Rolling Exhibition and can be found here.
Pondering
When I feel like this...
I go here:
http://perezhilton.com/
Here:
http://www.etsy.com/
And most definitely here:
http://www.facebook.com/
This leads me to a question: What are your favorite Cerebral Palsy website resources?
Cartoon by Dave Walker. Find more cartoons you can freely re-use on your blog at We Blog Cartoons.
I go here:
http://perezhilton.com/
Here:
http://www.etsy.com/
And most definitely here:
http://www.facebook.com/
This leads me to a question: What are your favorite Cerebral Palsy website resources?
Friday, January 9, 2009
Multimedia Extravaganza
1. Comedians
Maysoon Zayid
Josh Blue
2. Books
Most of these books are around the young-adult level, though I do think adults would enjoy them as well! Plus, Small Steps is by the author of Holes.
3. Movies
I have never seen these movies, but they are supposed to be really good!
Friday, January 2, 2009
Snippets of My Childhood
1. The picture at the bottom right: I was born on Nov. 8, so that means that in this picture I was about a month and a half old (hence, the Christmas presents on top of the incubator).
2. The picture at the bottom left: The three cousins! I'm the baby in the flowery blue dress.
3. The picture at the top right: My Dad and I outside my parents old house. I was almost three years old in this picture. I love this picture, so I had to put it up!
4. The picture in the top middle : Christmas that year, notice the pink leg braces!
5. The picture at the top left: The three cousins +11 years! I'm on the far left.
Music and Motion
Eight year-old Mary Cassell, who has Cerebral Palsy, recently participated in the Joffrey Ballet's recent production of the Nutcracker (The post on her performance is a few posts ahead of this one)
Dear Dwell
As a way for readers to contribute to this blog in other ways than writing their own posts, commenting, or reading, I would like to start something called Dear Dwell. The purpose of this would be to provide a way for readers or contributors to ask questions in a formal letter-style. I think this would be a great addition to the blog because a question could be asked and then subsequently answered by me in a paragraph response and by readers through the comment button. If so desired, writers of questions for Dear Dwell may remain completely anonymous. Please email your questions for Dear Dwell to my email address: comptonann@gmail.com
Let me know what you think of this idea!
Thursday, January 1, 2009
Cerebral Palsy Pins
I just came across these amazing Cerebral Palsy Awareness Pins. They are made by a woman named Christy who has a sixteen year old daughter living with Cerebral Palsy. Complete with an awareness ribbon bead and a few green beads these pins would be great on a cute bag (Am I starting to sound like an infomercial, yet?). Better yet, the proceeds go toward buying items for the local dog pound. I loved them so much that I bought one for myself! Check them out here.
The Big Dilemma: Shoes
I don't know about you, but for me, as a person living with Cerebral Palsy buying shoes has always been my biggest achilles heel. I'll have an adorable outfit, but not the perfect shoes to match. This comes from the fact that if I were to have the perfect shoes to match (i.e. narrow, non-supportive flats, sandals, or clogs) my walk would either be extremely exaggerated or I would fall flat on my face! So, after many trips to the mall and many stores I have finally found the perfect shoe source Zappos, or in other words, the shoe store that is only on the internet and is complete with free returns! Scrolling through multitudes of pages, the possibilities are endless with the number of" "Cerebral Palsy-approved" shoes is infinitely endless. Finally, I must share that my favorite shoe company is J-41. They are the makers of the fabulous pair of shoes above!
Happy 2009!
I've made my personal resolutions for this year and now its time to make some for this blog:
- Gain more contributors and readers.
- Help people who have loved ones with Cerebral Palsy or those who are living with Cerebral Palsy.
- Enjoy the up and coming blog layout by Blogs By Danielle .
- Donate money to United Cerebral Palsy and March of Dimes.
- Possibly create posters or tees promoting awareness for Cerebral Palsy.
- Gather stories about life with Cerebral Palsy.
The list could go on and on! Feel free to share your input!
Subscribe to:
Posts (Atom)
