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

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!

Jessi

A True Gift

As you know, I have to overcome many obstacles in my life and I am ok with this because I believe it makes me a stronger person.  I have received a lot of wonderful Hanukkah gifts thanks to my family and friends but the ability to have my freedom back is an amazing gift.  I am used to not being able to brush my hair or having to have someone give me a shower and read something to me because it is too small.  These are all things that I have either come to accept or are just a part of me and I know no difference.  However not having my power wheelchair, my source of independence, work in the way it should was beginning to drive me crazy.  Not only that but I knew that once the wheelchair company agreed to take my chair, a degree of my independence would be taken away.  This time not for something fun like a vacation.  That is another thing I have learned to accept because it is too risky to take on an airplane.  Now I am not saying that my wheelchair has never broke because that isn’t true.  I am just saying that because it went out of state I wasn’t sure when I would be getting it back.  I am lucky that during this time I was able to switch back and forth between a manual chair and an old power chair because if I sit in the power one too long my back starts to hurt. Thanks to my mom’s persistence, I was able to get my chair back in one piece and it just so happened I got it on the last night of Hanukkah!  I couldn’t have asked for a better present!  Thank you mom! 

I am free! 

-Jessi

Ps.  Sorry I haven’t decided on names for the frogs yet!  

A way to wrap up the year.

A few weeks ago, when I was down in the dumps worried about how I was going to complete my internship hours for this semester and worried about what i was going to do for next year, I turned on the TV and watched an extreme home makeover episode about a boy who went through chemo therapy and is in remission.  When he found out that he had cancer he was told that his blood type was B+ and his motto and foundation were born.  Now he has a foundation entitled "B+" and since that episode it has encouraged me to push on through the end of the semester and I thought if he can do it so can I.  So my message to you as this year comes to a close is we have a lot to look forward to in 2010 and remember to stay positive or in case of Cameron, the boy in the episode, B+. 

Roommate Questions

A lot of you have been asking me "What is your status with your roommate?  Do you want a roommate?" or some people have been telling me "It's smart to get another roommate" and my response to that question is sometimes it gets lonely to not have another roommate around and I'm sure it puts a lot of pressure on my parents at the same time but for right now, with me trying to figure out what I'm going to do next year, completing my classes for this year, making sure that I spend enough time with my family and friends, it doesn't seem like it would fit in my schedule, at least not to have somebody with a disability.  I like to make my own schedule and my own decisions even though sometimes I do miss Norine.  So as you can tell, there is no straight answer to how I feel but right now I am content if my parents are OK with it.  

On the brighter side I am happy to say that thanks to Brian and Justin I am the proud owner of 2 frogs.  Yes I not only live in an apartment now, but I have pets of my very own.  Something I have wanted since I moved in.  However, right now they are nameless and I believe no living thing should go nameless so I am having a contest to see what names I like the best.  The winner will win something very frog-a-licious.  Email me or send me a post with your ideas.  Have fun and the frogs and I say thank you in advance.  Happy holidays and as you can tell I'm having fun already!  Ribbet Ribbet, Love Jess

Speaking Out Has A New Meaning

 

I enjoy my life on a regular basis but sometimes going to places such as the speak up and speak out conference makes me feel reenergized and ready to take on any struggle that comes my way.  From the minute I walked into the conference, I felt at ease despite the fact the night before we had trouble getting our rooms and getting the right accommodations I needed at a different hotel.  All of that disappeared when I came to this conference.  All the people were excited to share what they had to offer and have a good time.  There were vendors there that had equipment to make peoples lives with disabilities that much easier.  Motivational books and people laughing and smiling it was the greatest energy in the world.  I knew right then and there that I had made the right decision to come and represent the IAMC Illinois Association of Microboards and Cooperatives and represent myself.  As a person with a disability I knew that just like camp and my dance workshop, I wouldn’t be judged there or looked at differently.  For example there was a dance at the end of the conference and I was debating weather or not to take my shoes off because my feet were really hurting me due to the fact that I was really excited, and then I thought this is the last place I’m going to be judged, put a smile on my face, took off my shoes, and kept spinning.  People were just excited that I was there to stand up and speak out. 

Throughout the next few days I not only enjoyed myself but I got to learn a lot about advocacy and what I want to do in the future.  It motivated me to continue doing what I am doing in school and helping others while keeping in mind what I have to do to stay strong as a person with challenges.  It reminded me never to give up and thanks to this conference.

 

I was able to get a real handle on what an amazing legacy Lester Prichard left on not only the disabled community, but also the world.  It was unfortunate that I never got to meet him because I think he would have made a big impact on my life but just hearing about his legacy and what an impact he made on other peoples lives made me stronger and made me proud to be at the conference.  Luckily however I was able to meet and take a picture with his wife Barbara and she told me, “In a way Lester did meet you because he saw you on the Life My Way website.”  Just like Lester, Barbara was and is an amazing person and it was an honor to meet her.  We need more people in the world like Lester and his wife with positive attitudes that say we can do anything we set our minds to and Barbara even said “despite Lester’s death we can’t give up the fight for equality.” To find out more about Lester, go to my previous blog. 

Besides meeting Barbara I was also able to strengthen my friendship with Paula Vanier.  She is another self-advocate who I briefly met before at a meeting for people who have cooperatives in the state.  Getting to spend this quality time with a person who is older than me with a disability made me feel inspired and energized along with everything else I did at the workshop from hearing someone speak who wrote his own book despite having down syndrome hearing someone speak with cerebral palsy who is married and just plain dancing with friends.  I learned that sometimes the smallest things could make you the most empowered.  Remember to speak up and speak out.  Happy Thanksgiving to you all I feel so blessed have you in my life. 

 

Love Jess