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!

Month of Mishaps

After an ideal trip to a sand bar on the river, we packed up to go back to our cabin in Wisconsin. Dad goes to put my orthotic on and he looks around for the top piece and he can't find it. The whole family looks around and we can't find it. After a few minutes, we figure the piece must have blown away. Shoot! 

This is not the end of the world by any stretch of the imagination but a total pain! I was not mad at Dad in any way and I let him know it. Being without my orthotic means walking is more difficult with my assistants. I can walk with Dad in anything but with five different assistants, it's a sincere struggle. This also means I have to schedule an appointment to get this piece replaced. When I went to the doctor, he needed a few days to make a new piece. Of course this couldn’t be easy! 

Meanwhile, my assistants are ALL on vacation or have asked this week off months ago. I have two scheduled trips home which I honestly don't mind but that means I don't have time to plan my birthday party. My family has things going on and it isn't like I expect them to stop their lives and take me to Party City.

Anyway, I get back to my apartment and I don't have internet. It is not my service provider, it's my computer. This was so frustrating! I was ready to cry. My assistant had a huge test the next day so we were both stressing out. I had to remind myself things could be worse. I have a wonderful family, an assistant willing to try to fix this, a good book to read, it wasn't good but it wasn't bad. 

The assistant who came the next day was able to fix my internet. She doesn't know how but she did something. I did get my orthotics fixed the next week. I made it to Party City.

I had a birthday party this month. Like I said, getting the decorations was a triumph. When all my friends and family were surrounding me, I didn't care about my orthotic or that I lost access to the internet, I couldn't believe how blessed I was. I turned to my mom and said, "I can't believe this is my life". She looked into my eyes and said, "I can".

After my birthday party, something huge happened. For three years, we have been finding the right communication device. After college graduation, my mother knew my DynaVox was dying. I did too but I didn’t want to admit it. The University of Illinois Chicago Assistive Technology Team worked tirelessly to get me the correct device. With the correct device comes questions such as, what is the right mount, what is the correct key guard and with this device, what is the right phone? Those questions take a lot of trial and error! On Friday, everything came together! My dad hired a welder who made a customized mount and I activated the phone knowing it was incentive enough to put the new DynaVox on for good. It’s been two days and I haven’t thrown it in the garbage. Honestly, I really like it. I can tell I’m slower at communicating but every day I get a little quicker and I’m learning little tricks to help with speed. The big thing is I can text using my DynaVox. That is HUGE!!! If any of my readers want to discuss the DynaVox T15, I’m more than happy to. If you do get misspelled texts, please understand I’m using completely different software and I need time to train my finger on how gentle to press. It’s hard!

I still haven't found a job. I was a week late to a job fair. That was just my month. One assistant had the mumps. Who gets the mumps in 2015? Seriously! 

It's been a month of mishaps. I could have hit my forehead against the wall a few times but I didn't. I felt like it but with the way this month was going, I would have landed in the ER. The most important thing is that I am successfully using my new DynaVox!

Let's hope August has fewer mishaps!

Love, 
Hannah!