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!


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.

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,

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

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!
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.

Monday, May 3, 2010

The flying butterfly

There once was a young girl who was nearing the end of high school and like most high school students she didn’t know what she wanted to do with her future but she was sure of one thing she wanted to go to college

One month before her graduation from high school the young girl had a meeting with her parents and teachers to discuss her future. At the meeting a lot of things were discussed but then something was said by one of the teachers that would make a profound impact on this young girls life. She said I think based on the fact that you have multiple disabilities you are asking too much of yourself and I think even going to community college would be to hard for you.

The young girl was devastated she didn’t know what to do. For weeks she was beside herself. Then one day in between sobs, she said to her mother and friend “I’m going to do it anyway, I’m going to college.” Now almost five years later, the young girl is now a young adult and will be completing her human services degree at Oakton Community College and in the fall plans to go to Northeastern Illinois University to get a major in communications and a minor in social work. Yes, that young girl is me, I’m not writing this to brag about my accomplishments, more to encourage my readers to never stop giving up or as they say in the song “Don’t stop believin’.” Yes, I needed help along the way from my parents, teachers, tutors and my aides, but who doesn’t? I would like to remind you of a character I was reminded of when I heard a speech this past weekend at a conference I went to as I was completing my internship. The character was the little engine that could. I was able to complete my schoolwork with the help of others, but also on the mere fact that I kept repeating to myself, I think I can, I think I can. What ever challenges come our way in life it is our responsibility to keep on going just like the little engine that could. Also, as I was going through the library of which I visit often, the experience of starting something new came in my mind, I was reminded of the book the very hungry caterpillar by Eric Carle. Though the book is very simple, it talks about how a caterpillar grew and grew into a beautiful butterfly. That’s how I feel thanks to all the people that believe in me and see beyond my disabilities. I could dwell on the fact that my teacher was negative but instead I’m choosing to focus on the positive parts of my life and use that negativity to motivate me to grow and develop into the person I want to be.
Thanks to all of you that support me and believe in me and have helped me to grow and develop into the beautiful butterfly. Finally last year I closed my school year with some goals I had for the next year. Here are my goals for this year…

1 Get good grades

2 Join a club, sorority or community group at NEIU
3 Practice with dragon naturally speaking

4 Have fun!

I would like to end my post with the lyrics from the song “Don’t stop belivin’” I really feel that it sums my story up in a nutshell.

Just a small town girl, livin' in a lonely world

She took the midnight train goin' anywhere

Just a city boy, born and raised in south Detroit

He took the midnight train goin' anywhere

A singer in a smokey room

A smell of wine and cheap perfume

For a smile they can share the night

It goes on and on and on and on

Strangers waiting, up and down the boulevard

Their shadows searching in the night

Streetlights people, living just to find emotion

Hiding, somewhere in the night

Working hard to get my fill,

everybody wants a thrill

Payin' anything to roll the dice,

just one more time

Some will win, some will lose

Some were born to sing the blues

Oh, the movie never ends

It goes on and on and on and on


Don't stop believin'

Hold on to the feelin'

Streetlight people

Love your butterfly!


Friday, April 16, 2010

Helping hands!

I wanted to have a party for my mom’s birthday and my helping hands came through. I was so happy that I could make dinner for her at my own apartment, but I couldn’t have done it without the helping hands of Bari, Amy, and Mina, or as my dad says, BAM. Our menu consisted of caprese salad, lasagna with homemade meat sauce, courtesy of Amy, sautéed spinach, and garlic bread. For dessert, we whipped up a confetti Pilsbury cake, along with banana and chocolate crepes. I was so happy to have my first big home-cooked meal at my own apartment. Happy birthday, Mom! Hope it goes nifty at fifty!
Love Jess

Saturday, April 3, 2010

Flowers in my Garden

I often relate many things in my life to a garden, and in my room at my parents house as many of you know it actually has a garden theme. This month I would like to leave you with a poem I wrote many years ago, even though it has been many years I find myself relating to it in many ways, so here it is:

Dear Diary,

On this beautiful May morning
I sit and watch my garden
As it changes before my very eyes
Just like people
Here and there
All different shapes and sizes
Sweet and strong, bright and pale
Pointed, round, prickly, thick and flat
As the beautiful Mother Nature watches
directly over them- and me

Sometimes blooming fast
and sometimes very, very slow.

It all began when the first flowers grew
When I met my first friends-
my mom and dad
They watched me grow-
and learn and helped me...
Taught me to be kind to others and to be the
Then my Grandparents...came along

2+2 and another special 1.
In my mind they are not just numbers, or people
they are part of who I am.
Without them- there would be NO ME.
I enjoy them all here and now to feel and touch and
share, but one, that I can only dream of -
hoping not to fade away...

Every morning, he waits for me...
I wait for him.
Best of all...My companion-My dog Beau!

Oh my brother Brian
Sometimes I love him, and sometimes I don't.
Funny...Oh, my dear, is he funny!
So funny, the whole world can laugh with him.
I-R-R-I-T-A-T-T-I-N-G! He's only 6.
Friends from the neighborhood
Friends from school
Friends from Drama Camp
Teacher Friends, Therapist Friends,
Oh so many friends, from oh so many places
There are a few things that I absolutely do NOT like!
H, squeaky voices!
When people talk to me in HIG
Or touching my things without asking,
Rude, I don't like rude people
But I can deal with this...
Especially when I am in my garden...
For now I am loving and appreciating all that
I can feel and touch and share.
Like my garden there are parts of my life that I
hope are perennials...with me all the time.
But I know that there are parts that will have
to die away.
Like a star fading into the
Hoping each spring brings new growth in my friends.
Just like a garden needs lots of hard work
planning and attention-
weeding, watering, fertilizing-
So do my relationships with people.
Each May, as I explore my garden I hope that it
will sustain the same beauty as it did the
year before...maybe even more,
forever more.

September 2, 1998

Love ya,

I would like to end this post by welcoming my newest member to my garden Vanessa she's helping me on the weekends and she's a lot of fun to be around, finally thanks you to all my readers, my family and friends old and new, you all help to enrich my life and make my garden what it is Today.
Happy passover and Easter may the new spring help us to see beauty in our lives.

Monday, March 1, 2010

My roller coaster of a life....

For a person like me, when your aide decides to leave you feel like your legs and independence have been taken away from you. You feel like until you get a new one your on a roller coaster that doesn't want to stop but then when people calm you down you think you wouldn't be put in this situation if you couldn't handle it. That is what life is like for me when I find out the news someone is quitting or cannot work for me anymore. My life is instantly put on hold and the breaks are on. That was what these past couple of weeks were like for me. I always tried to think positively in my head, but part of me is always thinking, "Am I still going to be able to live here and live the life that I want to?" After lots of tears arguments laughter and arranging I was able to find a new aide and rearrange my schedule so it all works out for me, Lindsy and my new aide Mina. One of the questions you might ask, is how did you find her? Well, my dad works with her husband and he does remodeling for his apartment buildings. Thank you dad for finding her!! Sometimes you find the right people when you least expect it. You might also ask how things are going with Mina, so far everything is working out she is very dependable understanding and has a great sense of humor.

Just when my life was becoming very shaky and even though I was comfortable with Mina I was still very uncertain about how things would play out but a few days later I got the greatest news finalized. I GOT INTO NORTHEASTERN ILLINOIS UNIVERSITY!!!! Yes, it's true!! Now I am not only living on my own, but another one of my dreams has come true. Now my roller coaster is ready for take off and I thought, now that I got this news I can do anything. Having this news now has really encouraged me to take the good with the bad. I am thrilled and beyond excited about next year, and I really see the pot of gold at the end of the rainbow.
Thank you to all of those who have supported me in my educational endeavours along the way.
Love to all,
Your Golden Eagle,
PS. I was so excited, I had to take my shoe off!! Check out the pics on my facebook!!!

Tuesday, February 9, 2010

I saw the light at the end of the tunnel….

I have been very lucky lately. My stars have been aligned! For example, I wanted to have my friend over to make soap and my friend Amy came to the rescue and followed through. Her kind heart and personality is all that I was looking for, especially that week because I was having a tough week physically. The combination of somebody just offering to come over and having one of my best friends come over and spend the afternoon with me means the world to me. Sometimes it’s the simple things that can make a difference.

Then the other day, when I was down in the dumps about what I’m going to do for next year, the lady from admissions from Northeastern Illinois University told me that I would be considered Junior standing. I thought to myself, I am not going to get too excited because I haven’t been accepted yet, but I saw the light at the end of the tunnel.

Then a few days later, my family and I got the news that we got the CILA license, which is the first step in becoming a CILA provider. If I get the CILA it will allow me more choices and more freedom to decide when I want to come home and when I want to be at the purple pad. This is always something I have wanted and again, I saw the light at the end of the tunnel.

A few weeks ago, I was looking at my pez collection in my room at my parents’ house, and was like “you know, my apartment needs more color and I would love to put my collection on display at the purple pad.” So my mom and I went on a mission to figure out how and where we were going to display them. Within a few weeks, they were on display for all to see (well most of them.) When I get them all displayed I will post a picture of my final product.

Finally, another one of my dreams is coming true, thanks to the co-op and especially Janice’s hard work and dedication I am starting a physically integrated dance class in May. I am very excited and pumped up to see what wonderful opportunities could come out of this. I couldn’t have done all these things without people’s love, dedication and hard work. I am very grateful to have all of you in my life because without you it wouldn’t be as enriched as it is and as my mom says “I wouldn’t have a good life.” Thanks to all of your love and support, I can see the light at the end of the tunnel.

Happy Valentine’s Day



Wednesday, January 27, 2010

Food glorious food!

It was about 12:30 and I woke up with this amazing bout of hunger. You have to understand, sometimes when I’m sleeping, and wake up I forget that I have a disability so I was literally about ready to get up and get out of bed and then I was like ”o yeah, I cant” and I wasn’t about to call my assistant Jackie at 12:30 in the morning just to say can I have a platter of food right now with a million calories? So, even though I was starving I had to adapt just like everything else in my life. I thought, “What is the next best thing?” I thought I could make a menu for the next week in my head because that is the only thing. I could think of that would get my mind off the immediate hunger and think of something else. Usually it is hard for me to think of a menu for the week, because when ever I do it I'm usually not that hungry. So here’s my menu that I thought of:

Monday: pancakes and sausage with fruit, usually raspberries, blueberries or bananas.

Tuesday: salmon brown rice and broccoli.

Wednesday: chicken parmesan with broccoli, yes I like broccoli. And maybe a piece of sourdough bread if we have it. Now even though I’m not at the apartment the entire week, I thought of meals for the entire week anyway.

Thursday: chili and baked potato, some veggie other than broccoli.

Friday: chicken with rice usually in a bowl for easier access. By the way, I like most of my meals in a bowl.

Saturday: lasagna or spaghetti and meatballs with a piece of either garlic bread or sourdough bread and a veggie.
Sunday: a chopped salad with assorted veggies and either ranch or auntie’s dressing (not my aunts dressing, the brand auntie’s)

Now I’m not going to eat my frogs, but I would like to end this post with the names of my frogs, DRUMROLL PLEASE!!!!

The names of my frogs are, McDreamy and McSteamy. Hannah, you are the winner!!! Thank you thank you thank you!!! Or ribbit ribbit ribbit!!! Hannah, if you could send me your address either on facebook or email I can send you something very frogalicious!! Thanks to everyone else that were participants in the contest. Happy 2010, I hope the year is starting out well for all of you! With much love!