Thursday, December 9, 2010

Counting My Blessings...

This past month has not been the greatest for me emotionally. I am not telling you this so you can feel sorry for me, just to be realistic because I feel it is important to share the good and the bad with you, my readers. Even though I have been in the purple pad for quite some time now there are still periods of time when I think, did I make the right decision to be here? I am homesick. Should I be home for good? Can I handle this? This is too much for me. Am I good enough? With that said I am very greatful for the opportunities I had this month. I went to a conference for the second year in a row called Speak Up and Speak Out. It is a wonderful opportunity for people with disabilities to learn from each other, sell different products and have fun. Both years I had an amazing time! I also went to a conference for the IAMC. It was really nice because I was able to enjoy myself and it didn’t feel like work at all. At the conference we focused on two planning tools for the future called path and maps. It was also a wonderful opportunity to network with others, because like Speak Up and Speak Out we were from all over the state of Illinois. This month I was able to cross something off my bucket list and that is choreograph a dance. It was a lot of fun to see it unfold, my dancers worked very hard. We had an informal showing and I hope to have it in a real performance soon. That would be like icing on the cake. Thank you to those who came and watched. This past week I had a chance to go down town and talk to first year medical students about my life, my challenges, cerebral palsy and other things. For Thanksgiving, my family and I went to St. Louis. It was a yummy time had by all. Brimer’s, thanks for all the delicious food and early Hanukkah Gifts. Now, you might be wondering, did I get my wheelchair yet? No, but I am getting there. This weekend I participated in a singles auction at the Keep On Keeping On's Santa Cause holiday fundraiser to help raise money for my new chair. It was a big success and a lot of fun! Thank you KOKO and all of you who have donated so far and/or came to see me at the event! I feel so blessed that so many people care. So I am trying to count my blessings and remind myself that I am who I am for a reason. I encourage you to do the same, do something from your heart this holiday season, make something, donate clothes, toys, money, volunteer, call or write to someone you haven’t been in touch with for a while. Whatever you want to do. I am going to end by sharing this song because it helps me when I am down and I think it helps to express my message this month.

The stars look like they're not shining
Her hair, her hair
Falls perfectly without her trying

She's so beautiful
And I tell her every day

Yeah I know, I know
When I compliment her
She wont believe me
And its so, its so
Sad to think she don't see what I see

But every time she asks me do I look okay
I say

When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you're amazing
Just the way you are

Her nails, her nails
I could kiss them all day if she'd let me
Her laugh, her laugh
She hates but I think its so sexy

She's so beautiful

And I tell her every day

Oh you know, you know, you know
I'd never ask you to change
If perfect is what you're searching for
Then just stay the same

So don't even bother asking
If you look okay
You know I say

When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you're amazing
Just the way you are

The way you are
The way you are
Girl you're amazing
Just the way you are

When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you're amazing
Just the way you are

Love to all and happy holidays!

-Jessi

Sunday, October 17, 2010

The Unforgotton Hero

"Have you ever seen a more joyful face?" "The toughest I ever met." "Schwass dedicated life to inspiring others."
These are three headlines to articles written in memory of Michael Schwass, my confidante, mentor and friend. I think these headlines really do justice to who Michael really was. He helped me from the very start in getting me comfortable with living on my own. He helped me with confidence building, managing and creating better relationships with my assistants and better relationships with my family, to name a few. He even suggested that I try to find a place in the same building where he worked. You see, this is very bittersweet for me, he worked at 907 and I live in 607. There were periods of time when I saw him virtually every week or so, and sometimes I didn't see him much at all. But his strength and motivation was there, and I knew I could call on him in times of struggle. To find out more about Michael Schwass and why he was so significant for me and others who knew him you can read his book, "Don't Blame the Game." This is a chronicle of his life and describes what kind of a person he was. I hope you get inspired after reading the book. In memory of him I would like to include the lyrics to this song.
"Hold On" by B*Witched
Hold on, hold on,
hold on, hold on,
hold on, hold on.....

You've always been a tough girl,
but you feel you're about to break
You're feeling stuck and out of love
watching your dreams all slip away
been working mornings in the kitchen
and working nights at the corner store
as your life goes by, you wonder why
and you know that there's got to be something more.

Hold on,
but don't hold too tight
let go,
it's going to be all right
don't run away from what your heart is sayin' oh
be strong,
and face what you're afraid of
Come on,
show them what you're made of
I know it's hard when your hope is gone
but you've gotta keep holding on.

You hear a voice that is calling
and it's telling you to make a change
it's time to fly, and say goodbye
and move on to a better place
you know you've got to take the first step
to get to where you wanna be
just get on track, and don't look back
'cause it's the only way that you're gona be free.

Hold on,
but don't hold too tight
let go,
it's going to be allright
don't run away from what your heart is sayin' oh
be strong,
and face what you're afraid of
Come on,
show them what you're made of
I know it's hard when your hope is gone
but you've gotta keep holding on.

(Bridge)
Hold on......
you're gonna make it,you're gonna be stronger
hold on......
hang in there baby, just a little bit longer
hold on......
yeah, you're gonna be fine
don't give up, be strong
when the going get's though
you gotta hold on

Hold on,
but don't hold too tight
let go,
it's going to be all right
don't run away from what your heart is sayin' oh
be strong,
and face what you're afraid of
Come on,
show them what you're made of
I know it's hard when your hope is gone
but you've gotta keep holding on.

Hold on,
but don't hold too tight
let go,
it's going to be allright
don't run away from what your heart is sayin' oh
be strong,
and face what you're afraid of
Come on,
show them what you're made of
I know it's hard when your hope is gone
but you've gotta keep yeah, holding on..........

Hold on.........,
hold on,
hold on...

I think that these words really describe what he was trying to teach me and what he would want me to do now and always. I hope they motivate you in some way too. Treat each day like there is a significant purpose to why you are living it. Because there is! I believe he lived by this quote.
Thanks for all the love and support while mom and dad were in the holy land.
With much love,
Jessi

Wednesday, September 1, 2010

Baby Steps

Today marks the day of my second anniversary at the purple pad. I have definitely gone through several bumps. But, it has made me a stronger person. I have had to change a number of assistants. I have had to deal with having a room mate and not having one. I graduated from Oakton Community College and dealt with the realization about not being able to go to Northeastern this fall. But, throughout this whole experience. I have been reminded about a bracelet that my mom had given me. Its so eloquently reads." Its all about the journey not the destination." My journey has allowed me to stay in this apartment for two years with people who care about me and support me in my everyday life. Even though it has been two years. I am still amazed that this has become a reality for me. When, I first moved in. I felt like a little seed that was ready to grow. But, not sure of myself. Now, with the experiences that I have had in these past two years. I feel like I am able to do more things. With the help of this blog and the fact that I care about people. Another, one of my dreams has come true. I am beginning to motivate and mentor people that are less fortunate then myself. So, that their dreams of living independently or just their dreams in general can become a reality. Its all about the baby steps and that is how I got here. It was no magic pill or no magic fairy. It was just the love and support from my family, friends and readers. That helped me to be where I am today. I would like to also dedicate this post to my uncle Eddie and aunt Sherri in honor of his birthday. Thank you for being my most avid readers. Also, thank you mom for making sure my chair keeps rolling. I would like to end with this quote that I got from my friend Scott Crane. "It's not the disability that defines you, it's how you deal with the challenges the disability presents you with. We have an obligation to the abilities we DO have, not the disability". - Jim Abbott


Home Sweet Home
Jess

Wednesday, August 18, 2010

lean on me

I could not let this month go by without including this song!


Sometimes in our lives we all have pain

We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Lean on me...

Thank you for your love and support!



Lemons to Lemonade

There is an old saying that says, "if you get handed lemons you have to turn them into lemonade." This month I have truly been put to the test to see if I can turn my lemons into lemonade in more ways than one. For several weeks now I have had an ongoing cough that the doctors aren't sure what is causing it; but when I think about it even though it has been frustrating beyond belief I think it has been nice because it has reminded me that it is ok to slow down once in a while. Then a few weeks after I had just gotten the cough it was time for orientation to NEIU. And despite my cough I was smiling from ear to ear with excitement. I had done what I needed to do, signed up for classes, gone to speak with an Academic Advisor and the Accessibility office; I was all prepared, or so I thought. At the end of the orientation my mom said, "I could have heard them wrong, but I think you need a certain amount of math courses." At this point I was like thinking to myself "no mom! I already got that under control," but I thought I better double check. So about a week later I made an appointment with the head of the Academic Dept. and sure enough I was not only required to take math classes but I was short 1 Fine Arts course and 3 science courses; 1 being a lab- which is extremely hard for me due to my visual limitations. For several days, I was like "what am I going to do?!" This has always been my dream and now I could not see it coming true. However, later that week after lots of tears, hugs and frustration- I met with my Voc Rehab Counselor and I am going to continue to pursue my career in the field of Human Services. I have decided to take a semester off and work by spreading the message of person centered planning and community living and choices for people with developmental disabilities.
I have come to the realization that I will probably not be able to get my Bachelor's degree due to my limitations, but I am not letting that stop me when it comes to learning. In the spring I plan to go to NEIU or Oakton to take at least 1 Communications and/or Social Work class to better my communication and people skills. So I can speak to lots of groups of people and spread the message of freedom and independent living despite having a disability.
I would like to thank Rebecca and Lindsy for helping me while Mina was in Mexico. I hope she had a great time and I look forward to seeing her again. Without the people that help me I would not have been able to continue my independent life even in the past 2 weeks, so thank you again.
As a result of me having this cough I have limitations of what I can eat and drink. Lemonade is one of them, so i am not asking for a miracle just for all of you to sit back and have a nice cold glass of lemonade for me. Thanks! Love you all!
-Jessi
P.S. Another way I was able to make my lemonade happen was I had a friend from my Birthright Trip named Marva come over to play games with Lindsy and me. We had a great time and this was especially memorable because I did not know if I would ever see her again. I love the time we spent together and I will always remember it.

Thursday, July 1, 2010

Power of choice

I am learning not to take my independence for granted. Without my assistant's I wouldn't be able to maintain living on my own. It is very good to keep things into perspective. I would like to share a story with you. My family is trying to apply for CLIA (Community Integrated Living Arrangement) funding which will allow me to live in my own apartment and to take some of the financial burden off my family. I didn't realize this until after we started applying for the funding. But, it finally hit me. That I am dependent on people to help me. This is my reality. I than realize that independence is not necessarily driving a car nor physically putting myself into bed. Its about deciding when I want to go to bed or where I want to go in a car. For me its the power of choice. However, it doesn't mean that people such as myself want to be treated any differently. In fact, it brings me back to the statement"We the people want to be treated equal". That was said, several years ago by one of are fore fathers. So it is not a new concept. I want to thank Mina and Tonya for all they do to help support me on a daily basis. So, that I can have the power of choice. Happy July 4Th and remember that everyone has their own power of choice.

Love Jess

Friday, June 25, 2010

Hopes,dreams,and wishes

For June since I have had a lot of time on my hands, I have created a bucket list of things I want to do in the future, and I'm saying future because I don't want to think about things to do before I die.
Here it is:

1. Go adaptive skiing with my family
2. Help a person with a disability who is less fortunate than me
3. Get a dog once things are settle in the apartment
4. Visit Emily, Sarah, Paula, and Jordy
5. Get a chance to visit Europe and help people there
6. Have a chance to work with assistant dogs in some capacity
7. Have a chance to sit in a garden for as long as I want
8. Become a motivational speaker
9. Work with people who have communication difficulties, to better their lives
10. Have fun

I am suggesting that everyone creates a bucket list, it helps you to motivate yourself and have some direction in your life.

What are your dreams, hopes and wishes for the future?
I challenge you to think about that this month.