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

 

The power of positive thinking

I know I have already written a post for this month but I thought both of these stories were blog worthy

I was lying in bed with a really bad cough wishing that I was at my parent’s house because for some reason they seem to have better immune systems.  When I thought ok there’s nothing I can do about it.  So how can I think positively?  It was then that I thought about Lester Pritchard a man who was a disability advocate who spent his entire life thinking positively and working to better the lives of people with disabilities.  I only wish I had the opportunity to meet this amazing person.  As a tribute to him here is a little bit of information about who he was.

http://www.chicagotribune.com/news/chi-obit-pritchard-15-oct15,0,3668892.story

As most of you know besides living on my own, going to school, and getting an education is very important to me.  All throughout my time at Oakton just like Lester, I have had to advocate for my needs as I have said before in this blog.  Since I am graduating in May I knew I had to plan ahead.  Now you might be wondering Jess why now it’s only October?  When you have a disability you have to plan ahead even for my graduation because in order for me to stand up in the ceremony the way I want to, they need to order a special ramp and reconfigure the seating in a different way.  From prior experience with this particular person I was expecting her to be negative and even though I didn’t get everything I wanted I still got about 90% and that was only because of safety. 

I was really impressed at the detailed notes she took of our conversation and how much she seemed to care about my situation.  I was excited and giddy.  I left the woman’s office with a huge smile on my face.  I think I not only made myself happy but taught her a lot as well! 

Lots of love

-Jessi

 

Don't Judge a Book by Its Cover

 There are only a few places where I feel completely accepted these are camp, my dance workshops both here and in California and most recently my trip to Israel.  Why am I telling you this?  The other day I was at a party and about to judge someone because they were petting me like a dog and talking to me in classic baby talk.  I almost said something but then I thought I get judged all of the time and is it really worth it?  Then I was sitting at Yom Kippur service a few days later and having a good time, when all of the sudden our older rabbi walked up to the pulpit.  I was thinking o no why am I here.  I wish I was back at my apartment because when he speaks he goes on forever.  But then I thought come on Jess give him a chance.  It’s the New Year!    Everyone knows the saying don't judge a book by its cover. Do you like to be judged?  So I did what my conscious told me and gave him another chance.  As it turned out it was pretty good.  Now I am not saying that I will never judge a person again or by telling you these stories I will never get judged again because I know that unfortunately when you have a disability it comes with the territory.  But I think that becoming conciously aware of when you are about to judge someone can only help you. 

So in honor of Yom Kippur or the Jewish judgment day, just ask yourself would I want to be treated that way and do I want to feel completely accepted where ever I go and what ever I do?  That’s what I want don’t you?