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

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.

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

(chorus)

Don't stop believin'

Hold on to the feelin'

Streetlight people

Love your butterfly!

Jessi

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

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

BEST I CAN BE!

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.

Soft,

small,

lovable,

white,

Best of all...My companion-My dog Beau!

OH BROTHER

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-

Friends from the neighborhood

Friends from school

Friends from Drama Camp

Teacher Friends, Therapist Friends,

Oh so many friends, from oh so many places

ALISE, GINA, ANDREA, MARI, MARISSA,

STEPHANIE, SARA, DANIELLE, SAMMI,

NIKKI, LISA, CLAIRE, JANIELLE, GRANT, OACY,

LAYFER, RACHEL, REBEKAH, DIANE, MATT

MARGE, AMANDA, KATHLEEN, GETA

WOW!***********

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

distance.

Hoping each spring brings new growth in my

garden...new 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,

Jessica

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.

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,

Jess

PS. I was so excited, I had to take my shoe off!! Check out the pics on my facebook!!!

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

xoxo

Jessi