A Simple Message

We've made Christmas such a big deal and in some ways, we're right on track. Our Savior came down and gave us hope. It's a huge thing that deserves a lot of attention. If you celebrate Hanukkah, it's about a miracle and that deserves attention also. 

These two miracles that we celebrate have turned into stress for so many. For example, I love sending Christmas cards! I love staying in touch and seeing your pictures. Honestly, it's become a staple for having my own apartment and being independent for another full year. However, I eventually get stressed because it becomes about how many can I get out this year? That is when I have to say to myself, 2,000 years ago a baby was born and they rejoiced over a little baby boy. They didn't go out and stress themselves out over gifts, decorations, and cards.  They just enjoyed the moment. 

Christmas day is over but I hope the peace and joy of that day stays with you. We are going to Mexico as a family and I am going to really try to be in the moment with my family. If I forget to check my phone, the world will go on. Granted, I just got a smart phone for the first time in August so it's still a new, shiny toy to me so forgive me if I am weak.

Well, the meeting with Congressman Dold went very well. He already was a fan of giving funds to Dystonia so meeting me was just another reason for him to support research. Most importantly (to me), he knows I can and will speak to any audience! If he asks me to speak, it'll be in this blog, I promise! Janet, a woman from Dystonia Medical Research Foundation was there to provide facts about Dystonia. She was amazing and we will definitely be partners for finding a cure! She invited me to the Awareness Days in Washington, D.C. in April and I can't wait to go!

2015 was the worst year of my life so far. Losing Julie and my job took a toll on me in countless ways. I feel like God is preparing me for something big in 2016 and I pray and hope that I am right! 

See you in 2016,
Hannah!

The Christmas Card

In this month of thanksgiving and preparation for Christmas, I find everything to be bittersweet because I am missing a piece of my heart which would be Julie. After much thought, I decided to tell you all how difficult it is to take a Christmas picture in my family which is long, tedious, humorous, and in the end, priceless.

My beautiful mother is a photographer so she picks places that are beautiful. However, she doesn't like me in the wheelchair which is fine but it increases the difficulty of the picture. A few years ago, we were on vacation at a resort. Mom really wanted a picture of us on a bench. I don't know why but knowing her, she knew it would be a beautiful picture. 

Dad says, "I'll sit Hannah on the bench and David and Genevieve can hold Hannah". OK, Dad, we can do this. I sit down and because of how hard the bench is my movement disorder called Dystonia erupts. I'm hitting David and Genevieve in the face. We get the movements under control. Then, I start to fall off the bench and everybody's frustration level increases. I make the grave mistake of pointing to the chair as if to say, could we just incorporate my wheelchair? Mom gets a really frustrated look on her face and as I go to say sorry, my hand hits Genevieve and she gets crabby because her hair is out of place. Mom takes a deep breath and says, "Smile". I have a death grip on my siblings so we look tense and frustrated. "Come on, REAL SMILES" Dad says. David decides to give Genevieve bunny ears and Mom's at her wits end. Both parents have to beg us to smile because we are all frustrated and desperately want this over with. Mom looks at a few pictures and says, "We’re good, I have a good picture". Hallelujah!

This year, Mom chose a log for us to sit on. 

It was at an end of a small hill. Dad and David thought my wheelchair could handle the slope. I’m making it clear that I don’t think so. We start going down and the back of my chair starts to go up. Mom decides that this is not a good idea. I feel like banging my head against the DynaVox because I knew this would happen. I walk down the hill and Dad sits me on the log and my legs are trying to help my body balance on the log. My core is working and my muscles are helping but that Dystonia is trying to screw up my efforts. David is on my left as he just got the wheelchair back up the hill. Genevieve is on the right of me and as she goes to fix her hair, I realize I want my coat off because I have a really cute sweater on. Mom gets the coat off and we start smiling. We’re coaxed to do our real smiles. We got a good one! It will be in your mailboxes soon.

As much as we role our eyes and tease Mom about the Christmas card, I’m glad she does it. We have dozens of beautiful family pictures in the house because my parents have not given into Dystonia! Barb, a friend of the family has connected us to Bob Dold, an Illinois congressman to explain how Dystonia affects lives. It’s ugly, disruptive, and in some extreme cases (NOT my case), it can be fatal. I’m going to tell Congressman Dold that I want a Christmas without Dystonia.

This Christmas, I want donations to Donate Life and the Cystic Fibrosis Foundations so nobody has to suffer like Julie did. However, one Christmas I want to take a Christmas card without Dystonia.

I am Thankful For You All,

Hannah!

Two Stories

I live a unique life.  Sometimes, I forget how unique it is. Ms. Wojick, who’s known me since I was five years old, took me to a networking event.  I wasn’t with an assistant so this was really going to be an adventure. I was so excited!

Ms. Wojick had figured out the car and how to get me in. We drove downtown and quickly ate pizza at Water Tower Place so we had food in our stomach. We walk the three or four blocks to the event and we walk into this tiny space with 100 people in it. The table with the name tags on it had a candle on it. My wheel got caught on the bottom of the tablecloth and I knocked everything over which is one of the few things I can’t laugh off. Most readers know I have a really good sense of humor and I can usually laugh most things off; this was embarrassing. I hate the feeling of knocking things over. That was my entrance and the night just got more interesting.

We get to a place where we can actually breathe. Looking around, we realized everyone had a click and this was just an excuse to drink. I was disappointed but I wanted to see if I could network with at least someone. A few people came up to me and asked about my communication device and we did actually meet a cool woman who did social media so I might work with her in the future.

The weirdest part of the night was when a woman approached Ms. Wojick and exclaimed that she had to call her designer to see how to get the wax off her dress. I’m confused until she adds, “you knocked the tablecloth over and the candle knocked over”. At the exact same moment, my assistant who’s supposed to put me to bed texts me to tell me she’s puking. Ms. Wojick sees this text too. I look at her as if to say, I have to handle this assistant crisis, you have to handle this woman. So, I start texting all my assistants to see if anyone can come and help me with bed. The designer dress woman now wants a picture with me which I still don’t understand. Ms. Wojick and I left the event after that and started cracking up! The entire night was unbelievable and I know Ms. Wojick got an education in the life of Hannah! The week after that I went to a very different event that welcomed me with open arms…literally!

Me and Julie's twin

My best friend who passed away, Julie actually played volleyball in high school. There was a memorial game for her. I obviously wasn’t missing it for the world! So, I texted Kevin, one of Julie’s brothers and I am literally out the door and Kevin doesn’t think there’s an elevator. I said, "I’m still coming"! Monetta, my assistant and I talked about how to get me up there. We have a plan! We get to the game and sure enough,

there isn’t an elevator. Want to see determined? It is me and Julie’s family against those stairs. Monetta asked, “whose picking up Hannah”? Her oldest brother, Michael and some of her cousins picked me up and I sat in a folding chair which solicits a huge shout out to my therapists who made me gain that core strength and balance. Julie’s mom ran over with a shirt that was a copy of Julie’s jersey. I texted on my smart phone to communicate and it was just a wonderful, pink night! 

It’s just those two stories this month. Remember, I need a job…

Love you guys,

Hannah!

Random Acts of Kindness

In the news, we hear these terrible stories about school shootings, unnecessary deaths, and the list of inhumane acts goes on and on. Being in a wheelchair, I see random acts of kindness every day that reassure me that humanity is inherently good and kind.

My first story happened on a while I was on a walk. I had crossed the street and dropped my iPod. It was cold but I really wanted to walk in the park because it’s a significant source of independence for me. Cars are passing me and I am not leaving my precious collection of music on the sidewalk. After about 2 minutes, a woman stopped her car, got out, and made sure that not only I had my iPod but it was in the correct spot. I was so touched that she got out of her car and had empathy for me. It was maybe 15 seconds but it made my day! 

My second story happened in D.C. Jenn, my assistant couldn’t go because she got into nursing school. It was just me and my dad. He put my make up on for my meeting which was different for him. The only part he couldn’t do was my earrings. I didn’t anticipate this issue but it was. I had the idea of asking the women at the front desk because I think every woman wants to complete her outfit as she sees fits. These pearls completed the darn outfit and I was going to get them on! The woman at the front desk smiled at me as my father explained the situation. She was more than happy to assist me! It’s incredible that she was not fazed by it. Again, I was really touched and felt like a put together woman ready to take on D.C.

I want to acknowledge that my dad didn’t have to go to D.C., I could have participated via teleconference but both of my parents know how important the FCC Disability Advisory Committee is to me and made it happen! I’m blessed to be their kid.

The most incredible act of kindness took months to transpire. About 6 months ago, I was out with a couple from church and a man in his fifties approaches my friend and starts asking about me. Well, me being me, I had to go join the conversation. I shake his hand and tell him about my awesome life. He gave me his information and I gave him my business card. I really didn’t think anything of it. I e-mailed Tom over the weekend and he got back to me Monday. Suddenly, I realize this is SOMETHING GOOD. Ultimately, Tom and Marilyn Flanagan had me speak at their benefit for the organization Marilyn works for which is RRAF (http://www.rraf.org/index.html). This organization serves individuals who have cognitive disabilities. I learned that it undoubtedly changes lives. I told the audience I wanted to mentor people who just were in accidents and lost their speech. I want to teach them that a communication device is just as powerful as a natural voice. People who are able bodied can point out the countless benefits of communication devices all day but I come in to a hospital room and I have merit. It’s definitely something I want to do. If you know of an organization that would be able to pay me for these services, please let me know. RRAF, keep on changing lives because you are making a huge difference!

I hope all of you found a way to make the world a little bit pinker in memory of Julie.

I absolutely love you all,

Hannah!

Julie

On August 7th, 2015 my best friend, Julie D'Agostino passed away as she ended her battle with Cystic Fibrosis. 


I could tell you how I screamed and cried, I could tell you how devastated her family was, I could tell you how beautiful she looked in her casket at the wake, I could tell you that there were 500 people at her funeral, I could tell you her casket was pink and I kissed it twice, I could tell you a lot of things about this terrible month. Here is what I will tell you: 


Julie lived her life like no other. She truly lived. I was blessed with four amazing years of her friendship. She understood me at a level only she could. The only fight we ever had was who had it tougher. She would insist that I had more challenges. I think we all know the truth. She was in the hospital most of our friendship. Her parents would always thank me for coming. They didn't ever need to thank me because I always knew there would be a day where I wouldn't be able to visit Julie; I would be writing this post instead.  

Ever since I got the news about Julie, I have been thinking about this blog post. How do I sum up what she meant to me? The truth is I can't. Words fail when it comes to Julie. I want to tell you two things though.  


Julie made me want to be a better friend. 


Julie made me a better person. 


That girl set the standard for humility, kindness, compassion, and she knew how to wear pink. 


Thank you to Uncle Gary, Nana, Morgan (who made the saddest phone calls ever to previous assistants), Jenn (who held me throughout the funeral), Katie (who comforted me when I knew she was in hospice), Monetta (who got me through the wake), and Kim who was my assistant in college, came to the funeral which meant the world to me. My Uncle Gary and Nana had to step up because my family was in Ireland the entire week. It was the first family vacation I didn't go on and all I can say is God has really interesting timing. 


To those of you who sent me condolences on Facebook, to the friends that took me out to eat, and people who sent cards, thank you. Your words and sweet gestures are getting me through the saddest time of my life. Thank you. 


If you want to do something to honor Julie, register to have your organs donated at http://donatelife.net/register-now/. If your beliefs conflict with that, you can donate time or funds to the Cystic Fibrosis Foundation at https://www.cff.org/


Finally, thank you to each reader who has prayed, sent well wishes, or asked about Julie when she was very sick.  I knew she was in a great deal of pain over the course of July and I think God took her He knew she was ready to put down her cross and rest in eternal life. 

I Love You All,

Hannah!