A New Year's Note

I am so proud of myself! For once, I completed my New Year's resolution.

In late January, I noticed that I was going to church every week. I thought to myself, "this is something in my control; I should make it my resolution". I am proud to say that I only missed five weeks.

Clearly, this was a spiritual goal. However, it became much more than that. It became about holding myself accountable to this goal every week. It was making time for that one hour of reflection. It wasn't easy some weekends. I am a busy person and eventually, I had every mass offered that was close by to my apartment in my Google Calendar. I would have to incorporate that one hour into my weekend plans. It was hard at times but extremely rewarding.
For example, after six months, I became a reader at my church. It would not have happened unless I made that year long commitment. I have read at church three times so far and now, my identity is shifting from "woman in the wheelchair" to "Hannah". I am slowly becoming closer to families-especially the kids. I have artwork from two kids from church in my apartment and their just SO cute! I also strengthened a relationship with a professor at Elmhurst College and ended up speaking to her class in September. Making this commitment has made me show my faith in a blunt way. 

A wonderful example happened over the weekend of 4th of July. I had to ask to go to church. I could have excused myself from my commitment and blamed it on a holiday but I held myself accountable. My uncle took me and as always, it was a great time with him.  

The only time I allowed myself to miss church was when I was with my family. I know God understands that my family is my everything. They are who I live for. They are my rocks in the storm of life. So, I had a good excuse for having to put my commitment on hold for a week. 
I will fulfill my commitment to God, myself, and all the good that I have received today. I asked my parents to drive me to mass. It's clearly the end of my formal commitment for 2013. I feel so accomplished. This year has been tough. I've seen Julie in the hospital too many times, I've had significant challenges with the coming and going of assistants, my roommate changed three times, my one of my physical therapists changed. It hasn't been easy. However, as you all know, I did get a job I love, I spoke multiple times, I got to travel to Minnesota with Tiffany, there are too many blessings to count! It was incredibly comforting to know I would have that time in church to pray, reflect, and be unplugged after a week of busyness.

2014 is here! Welcome it with a habit that enriches your life. Don't feel pressured to decide now. If you notice a good habit, keep it up! You never know what could happen! 

Thank you for your loyalty, support, and encouragement in 2013! You have no idea how much you keep me going!

My Sincere Love and Gratitude, 

Hannah! 

Sights and Sounds

As I listen to tons of Christmas music and shop online for the perfect gift, I can't forget what happened to our family on Thanksgiving Day.
 
Due to Genevieve, my little sister taking a sign language class, she learned about an opportunity to serve the deaf community. A church in West Chicago serves people who are deaf, hard of hearing, blind, or deaf and blind. When we arrived, Genevieve was tested immediately. She had to introduce our entire family. She was so helpful and knowledgeable about American Sign Language (ASL). The people that came were living in assistive living facilities. This was their Thanksgiving meal and more importantly, their celebration.
 
I couldn't help serve them food so I started talking to them. I want to make something very clear. Just because I am disabled doesn't automatically mean we can communicate. I would say 70% of the time, I felt like an idiot because I had no idea what they were saying. They could read what I typed in my communication device but understanding them was challenging. We would all look at these people like I am so sorry that I can't understand you. However, Genevieve and a couple of other people did interpret for us.
 
My mother was asked to help a woman who was deaf and blind to get her meal which meant deciphering what this woman wanted to eat. My mother has never looked more beautiful to me. She is so comfortable with helping anyone. Some would argue that it's because she had to help me for 23 years. I don't think so. I think my mom is just one of those people who is comfortable with everyone.
 
People who know my dad know that he can strike up a conversation with anybody. It wasn't any different that day. After helping serving food, he struck up a conversation with a man in his 70s. They talked for at least 45 minutes. It was very cool to see!
My brother, David who just turned 18 didn’t complain about missing football pick-up games. He liked being there which I’m really proud of. As for me, I met a phenomenal young woman who had the same mindset as me. We both were very happy and content individuals despite our obstacles. She would text me back after I would type something in my DynaVox. It was an instantaneous bond and she went home and read this blog. I knew she was cool after that!
 
In a busy shopping mall, I went back to Thanksgiving Day. An interesting thought entered my mind. Would they want to hear or in some cases, see the world? For example, would they want to see or hear about the Boston Marathon, the tragic anniversary of Newtown, the massive tornado that hit Illinois? Would they really want to see all the evil of the world? This thought prompted one question: if we were preparing for them to see the world in a week, month, or year, what would we do differently? Would we be kinder to each other? Would we be more compassionate toward our fellow man? Is the world prepared to be judged by people who can’t hear or see in a conventional way? We’ve come a long way. They wouldn’t see slavery or the holocaust, they would see a beautiful country with wonderful freedoms, they would hear the sound of children’s laughter, they would hear stories about how donating organs saves lives, and a lot of other amazing things. After thinking about this, I still didn’t have the answer but I think it starts with giving thanks and being kinder to our fellow man. I realize the deaf want to hear and the blind want to see, but what can I do to make the sights and sounds a little more beautiful than they already are?

There's No Wrong Way to Eat a Reese's

Tiffany and I had just got home from my monthly work meeting. It had been a good meeting, Sharon, my boss had passed out Reese’s and everybody was doing well personally and professionally. Tiffany put the Reese’s in my laptop bag before we went to battle with rush hour traffic. I wasn't that stressed because of work; I love what I do and who I do it with. I was stressed because I had a conference to speak at. It was the first speaking engagement I had to travel for including an overnight stay at a hotel. 

When Tiffany dropped me off, my mind was spinning! I had to pack, look over my power point, print cue cards for Tiffany, a lot to do in one night. Tiffany had to leave right away to pick up her contact lenses. While I waited for Mo, my next assistant coming, I could start looking at the power point. As soon as I rolled into my room, I realized my computer was on the back of my chair. So, I try turning on the TV, I can't do that because I can't work the remote. I can't do anything! My other assistant was stuck in the same traffic as I was twenty minutes ago. I looked at my closet and suitcase with pure, unadulterated anger. My assistant, Mo was on her way but I was beyond frustrated that I couldn't do anything. I honestly was not frustrated with Mo; she can't help how heavy traffic is. So, I just sat there waiting for my arms and legs to walk through the door. My black and pink suitcase sat there mocking me, reminding me of what I couldn't do. Anger diffused throughout my body and wanted to go to my eyes. I would not cry. Eventually, Mo walked through the door. I love Mo so I can’t start saying, “we need to pack”, “you need to help me with my computer”, and all the things I want to ask her to do for me. Instead, I ask how she is, how her day has been, and then I ask her to get me in comfy clothes. After she gets me in yoga pants and my favorite sweatshirt, I begin to feel better.

I know myself very well-well enough to know that I am like my father and seriously need to eat before I can begin to calm down. After dinner, we start to pack and Mo goes to the library to print cue cards for Tiffany so she knows when to change slides on my power point. We put them in the suitcase. I thank Mo for this and also for putting up with how stressed I am. Mo, or Monetta has been my assistant for a year now and I love her immensely. It's constantly a two way street with my assistants. I have to remember that they are only human and they have to consider that they truly are my hands and legs. It's a hard job on both ends.

Tiffany and I are setting up for my presentation. "Tif, where are the cue cards"? "In the suitcase". I shot her an "are you kidding me look". Tif mentions, "On the bright side, we do have Reese’s from your work meeting". I give her a smile and explain that I will tap her every time the power point slides need to be changed. After that, I was Hannah, the competent and poised speaker.

Life almost never goes as planned; when it doesn’t, remember, there is no wrong way to eat a Reese’s.

Love,

Hannah!

Jewish Vocational Services

Julie was riding on the back of my chair, Tiffany walked beside us in heels pushing Julie’s oxygen tank on the streets of Chicago. We were hurrying because I had an award to accept. The three of us were quite the sight as you can imagine! I didn't care; my two best friends were with me which was the most important thing to me that day. 

I became a client of Jewish Vocational Services (JVS) in February. JVS is a truly incredible organization that changes lives and the world every day.  JVS assists people with disabilities or any job seeker with finding fulfilling employment. They are some of the most wonderful people I've ever met. I did not know this but they have a client of the year award. I was honored to receive this award. Here was my acceptance speech:

I am humbled to be here today and receiving this award. First and foremost, thank you to Jewish Vocational Services for being strong enough to exist. It is difficult to serve a minority. It is absolutely an uphill battle. You choose to face that battle every single day. You don’t just do it Monday through Friday from nine to five o'clock; I have gotten e-mails at midnight from my team.

  

Speaking of my team, it is made up of Miriam, Jonathon, and Mike. Jonathan and Mike have been instrumental to my success in finding an internship. Their dedication and commitment to my personal uphill battle with finding employment has been remarkable. This journey of finding a job is about proving myself to the professional world. That is my goal. In my interview, Jonathan was able to make that crystal clear to my current boss. My team understood that fact from the first day I was in Miriam’s office. Miriam served as a beacon of hope in the fogginess of this battle. She never stopped seeing the end goal. She saw me proving myself to the right person. Miriam put her name on the line for me; she used a personal connection to get me my current job. Needless to say, I had to do well in that interview. There was no room for a mistake because Miriam’s reputation was in my hands. I didn’t know what I had done to deserve Miriam’s trust but I was honored to have it. Miriam, I am lucky to be your client, but I am honored to have your trust and confidence. 

In addition to those three people that I am blessed to have in my life, I have four people who have been through the good and bad with me. The first two are my best friends. They are confidants, support systems, advocates, and two fabulous women. Tiffany is one of these friends. Technically, Tiffany is my personal care attendant, but people that spend just a minute with us know that we are very close friends. We are friends that cry together, hold each other’s hands, that understand if one is in pain, and so much more. We can look at each other in a crowded room and know what each other is thinking. Tiffany, you are a guardian angel and I am blessed to have you in my life. The other fabulous woman here is Julie. Julie is the greatest friend you could ask for. She is thoughtful, kind, and she lives life to the absolute fullest. Julie is now fighting for her life for the second time as she battles through waiting to have her second double lung transplant due to Cystic Fibrosis. That is not a battle; that is a war.  Julie, I would not be as motivated without you. You have enriched my life in countless ways and I love you more than you will ever know. Ladies, we have each walked through hell with a smile on our faces and in the cutest of outfits. I love you both.

To my parents, thank you. I will be the first to admit that you two had to make me realize I needed these services. I thought I could win this battle by myself. You saw that I needed a team of dedicated people to win this battle, not to mention resources we did not know about. Thank you for always helping me push past others expectations. The three of us are a force to be reckoned with. Due to my parents, friends, and JVS, and a little help from above, I am now a paid social media intern at River North Business Association. I have impressed my co-workers and the board, this position fits my strengths and my disability does not get in the way. I think that is the first time in my life that I can say that. That is what this organization is about, seeing people’s strengths, and nothing else. Thank you for choosing to battle and advocate with people who are disabled. Together, we are changing the world. 

That was my speech! I feel blessed to be a part of this organization. 

Speaking of work, if you don't follow me personally on Twitter, search misshannah625. If you want to follow the River North Business Association and see what I do, search RiverNorthChi on Twitter. If you don't have Twitter, it takes a minute to create an account. I put the blog on my personal Twitter account too. 

Hope all is well in your world! 

Love,

Hannah 

When the Crazy Guys are Scared

Before I begin, I have some sad news. Kim, my assistant of six years decided to give her notice. It's terribly sad. As for the reason, there were many piling up over the past six months. She moved 45 minutes away, had an incredibly difficult commute, she was far away from her two boys, it got stressful, and the stress got to both of us. I'm very sad, but we ended on really good terms. I wish Kim nothing but happiness and I hold her in the highest regard. The good that came of this is that Tiffany, who took me to Minnesota, is now doing Monday through Friday. This allowed for another assistant, Aubry, to get her hours in so she didn't have to quit. Melissa, my roommate is working with me on weekends which we both love. We do need another assistant, I’m interviewing; it’s a slow process this time but I know somebody will make my team complete again.

I finally get to tell you about Mexico! I got to live out a dream which is always amazing! I got to go parasailing and scare Mom and Dad to death. It was a blast! The crazy guys who offered my seventeen year old brother a cigar were even scared for me. I wasn't scared; I was fearless.

We took jet skis to the boat. David and Dad somehow lifted me in the boat. I’m still not sure how we got in but we did. We got strapped in our harnesses and literally were flying in seconds! It was so peaceful and serene. David kept saying "are you OK?" This was because I was completely vertical because I couldn't stay sitting. I really was fine. I almost felt better vertical because it proved I really couldn’t possibly fall. It was funny because David and Genevieve could tell I was fine and came to the same conclusion of vertical being better for me. I had so much fun talking to them up in the sky.

 However, the guys who did the parasailing and my parents were scared of me hurting my legs so they brought me down early. I was so mad in did not want to stop. My mother and I almost had a fight as they unhooked me but then I realized I got to parasail which was my dream. Mom was so incredibly terrified but we had a blast! When the crazy guys in the boat are scared, I know I'm living!

David and Genevieve will be the ones saying yes to these adventures in the future. My parents have let them know throughout the years that their big sister can do anything. If I have scared someone during my day, it’s great, because that means I’m living! I scared people when I was on speech team, I scared people when I volunteered to tutor inner city kids during high school, I terrified you all by going to college (that was fun), I scared you when I joined Phi Mu, if I am scaring you, I’m going to have a blast and really live!

I genuinely love that I have a family that encourages me to push the envelope and absolutely shatter people’s expectations of me. It makes for a fun life!

In other news, David made captain of the football team and was player of the week in the local newspaper. Genevieve started high school. I was really nervous all day for her but she loves it. Thank God! Julie is doing great for her condition! I’m over at her house (NOT hospital room) a lot. I’ll bring my Starbucks and we’ll chat. It’s wonderful! Keep the prayers and good vibes sent her way!

My new roommate, Melissa, is really fun! She is willing to go the extra mile which makes all the difference for me. She gladly took weekend shifts and really stepped up when I needed someone. All my assistants have acknowledged that we are understaffed and have stepped up. Even some former assistants have pitched in and that feels great to know that I have an incredible support system.

I feel so blessed to have found people who understand that at the end of the day, I want my independence and I want to be happy. I want to scare people and make people question their limitations. I love life and am so grateful for this blog and the people who read it. It’s been twelve months of living my dream and I couldn’t be happier.

Just waiting to scare you next,

Hannah!

What Happens in Minnesota...Gets Blogged About

I opened my eyes Friday morning and hugged Tiffany. We were going to Minnesota!

I had waited six months for this trip and it was finally here! My heart was beating out of my chest. This was my first independent trip. I had made the hotel reservations, I made the plans, I did everything, and I was responsible for everything. I was responsible for a lot but the most significant piece of my trip was my parents trust. I had it Thursday night. I made sure I had it Tuesday morning.

So, Tiffany and I get in the car and it had begun. The first stop was not the hotel or my aunt's house. It was in Rochester at the Mayo Clinic. About a month ago, my friend Brian was diagnosed with leukemia. Everyone was shocked and very sad.  However, Brian is kicking cancer's butt. He just got a cancer free biopsy which is such a relief. Brian has a long journey ahead though. He has an intense round of chemo and a bone marrow transplant to endure. When I saw him, my heart smiled and I realized he was superman. He is who little boys should be looking up to. Brian does not need a cape; his smile proves he is superman. He was so positive and we had that banter that felt so normal. I met him when I was a young camper, now; I'm visiting him while he battles cancer. Relationships evolve to unimaginable things that make life so magical. It's crazy to think about. So, I get to say I met superman and I will be praying for him every day.

Funny little story. Tiffany called Lauren, my cousin, who I was having dinner with and she casually mentions we're at the hospital. Lauren is flipping out until Tiffany explains that we are visiting Brian. My bad! Sorry, Lauren!

Anyway, our next stop was my Aunt Sue's house. My uncle and her divorced years ago so it is always a blessing to see her. I gave her the longest hug when I saw her. However, her first words to us were, "GOD BLESS TIFFANY"! She couldn't have said it better! I'll talk about that later but it's how everyone felt throughout the weekend! We're at my aunt's house and Will, my godson is putting on a show. He was ON that night! He thought the island in the kitchen was a monkey bar, he would slide on the floor which was an ice rink, my wheelchair was a Zamboni, this kid is obsessed with hockey! I love it! It's the cutest thing in the world to this godmother! It was so great seeing my family!

After that, we got to the hotel and checked in. We go to the room and it IS NOT accessible. It's midnight; this is the last thing we need. Tiffany calls the front desk and asks why the heck were in this room. Tiffany can't get over how stupid the front desk is for not seeing the painfully obvious. I realized that Tiffany is going to see a parade of stupid throughout these four days. I'm used to the ignorance, she is not. I think it opened Tiffany's eyes to life outside Elmhurst for me.

We were headed to the Mall of America. We get in the car and the door won't close. The bottom of the door kept hitting the sidewalk since the road was slanted downward. The door won't close and the car won't move. So, I'm in downtown Minneapolis and calling Mommy and Daddy is not going to help anything. I went back to basics which is letting as many people see the issue because it always helps. I told Tiffany to get the valet guy who was being very nice to us. He noticed the weight of my chair was contributing to the fact that the door would not shut. I got out and the door shut, Tiffany moved the car closer. I got in and it was a success! Off to the largest mall in North America!

We had plans to see my friend, Amanda, for lunch. Amanda told us she was moving in three days and I sincerely appreciated her taking time out of her busy life for me. We hadn't seen each other in four years and it was so good to see her. She came into my life right before college and to see her a year after graduation was so cool. I'm not that 18 year old girl anymore, I am a 23 year old woman and it was weird to think about how my values and morals have changed. I've changed so much and at 18, I was the shell of the woman I am now. I hope I can say the same thing in another five years. It was so fun to see how our lives have changed and how our dreams have changed. We'll definitely keep in touch.

Tiffany and I shopped until we met Katherine for dinner. Katherine ran to me and gave me the biggest hug in the world. I felt at home in her arms. We did a little more shopping. I have never seen Katherine take to someone like she took to Tiffany. Katherine and I may be Tiffany's greatest fans. It was pure bliss! Katherine kept looking at me like I can't believe you made this trip happen. Of course I did, I love you too much not too.

I went to church with Aaron Sunday morning. Tiffany stayed at the hotel so she could have time to herself. In my opinion, this is crucial when someone has to help you for an extended period of time. Aaron may be my ex boyfriend but it was genuinely good to see him. I went to church with him back in December and his faith family welcomed me with open arms yet again. It was wonderful; we will always be good friends.

After church, I got to rest. I needed it! I had been going since Friday night and I needed a rest. We were expected to be at Lauren and Scott's house in two hours. I laid on the bed in a cushion of total happiness. 

We went to Lauren and Scott's house. I teared up at a flash back I was having. Scott was holding Will on the porch and I met my precious godson for the very first time. He was this little thing. Two years later, he was clinging to Lauren as he smiled at Tiffany and me. Will was acting like a typical two year old when we went in the backyard. He climbed on everything. He loves to honk my horn and his eyes light up whenever he does it! It was so great catching up with my aunt, Lauren, and Scott!

I was really tired after that visit and it led to a very funny scene. We both needed coffee, it was an emergency! So, we head to the gift shop and they are closed. Some employees see us and ask what we want. Coffee. They give us two cups of black coffee. We both look at each other and Tiffany starts adding sugar. I think it was 10 packets each. Needless to say, we looked like complete idiots! We chugged that coffee down. Suddenly, I was ready to have a lively dinner with Kate.

Kate was a counselor at Camp for two years. She and I had an undeniable bond. We just got each other. It was wonderful to see each other and she actually inspired me to write a poem when she said, "chase me down next time you're in town".

You all go your own way and so will I.

I will chase you down.

I will say the rosary with your family.

I will have Bachelor nights at Loyola Hospital.

I don’t mind, I will chase you down.

I will go to professor’s memorial services with you.

I will celebrate the gift of life with you.

I don’t mind, I will chase you down.

I will send myself in a box or envelope if you’re serving our country.

I will curse the people who do not give you the internship you dreamed of.

I don’t mind, I will chase you down.

I will watch your eyes become stars as your bride walks down the aisle.

I will be at your child’s first birthday party.

I don’t mind, I’ll chase you down.

I will always make you smile.

I will always make time for you, my dear friends.

I don’t mind because there was a time when I had nobody to chase down.

I don’t mind because you all have become a part of me.

I don’t ask for praise or glory when I chase you down. I’m happy to.

You all go your own way and so will I. 

Wherever you go, remember to chase me down too.

Tiffany, you gave me the trip of a lifetime. There are no words. You have left me speechless with your kindness. 

Remember to chase me down, 

Hannah!