Moments of Independence

There are moments that define your life. College graduation, having a baby, getting married, or buying your first house are some of those moments. This post isn't about a moment that changed my life; they are about little moments that affirm my choice to live independently. 

First, I got a haircut independently.  After my last haircut, my hairdresser asked me, "why do you still have your assistants come...we're good on our own"? I thought about it. Why do my assistants come? Hmmm...there was no good reason. So this time, I went in the salon and my hairdresser told me how to angle my chair to get my hair washed. I tilt my chair and lower the back a little bit and she can wash my hair. When it's time to cut my hair, my hairdresser moves the normal chair and I roll in. It's pretty typical from there. I go to Salon Efthimia for everything so I knew the receptionist very well and she helped me pay and tip my hairdresser. It's pretty exhilarating to know that I can do that independently! 

The other independent moment was with my doctor. I just needed a refill so I knew it was an easy appointment. The nurse comes in and for a moment, she looks terrified that I didn't bring my assistant in but after a minute of conversation and explaining what I needed, she totally relaxed. When my doctor came in, she said, "I see you're alone today" and she smiled. We talked about the FCC and she was very proud. She joined the hunt to find me a paying job. She did give me a self breast exam; I think doctors will make the extra effort to get involved if you are alone. If you are a person with a disability on the fence about going to the doctor independently, I would give it a shot and have your caregiver in the waiting room. See what happens! 

Most of you know from Facebook, I went to D.C. It was great like always! I already want to serve a second term starting in 2017. The FCC would have to want to continue our Committee so one step at a time. A big thank you to Stacia who made the trip with me!

These moments of independence are so exciting but I actually have more exciting news. After a year and a half of looking, we found a condo in Elmhurst that I love! We closed on it yesterday and it's a true blessing! The woman who owns it now goes to one of the churches I go to in Elmhurst so it feels great to do business with someone who shares your faith. I'm excited and I want to really thank my parents. I am so fortunate! 

Remember when I wrote about meeting Bob Dold? The woman from the Dystonia Medical Research Foundation who joined us suggested I apply for a young advocacy award. I'm working on the application so prayers and good vibes are welcome! Regardless of whether I receive that award, Mom, Dad, Genevieve and I are going to Dystonia Awareness Days in April. This happens to be in Washington D.C. too!

Finally, and this is really amazing and has also has taken some time too but I finally have a website! I know, right? Go to http://inhannahswords.org/ to see it! We're far from done but I feel like I can show it off. A huge and sincere thank you to Kevin for working so hard on my website. Kevin helped me get confirmed in the Catholic Church back in college and now, he is designing my website! It's amazing how God works. Kevin currently works for the Give Something Back Foundation which I am a mentor for. 

I'm starting to see a light at the end of a very long and painful tunnel. I'm getting glimpses of that light and I can't wait to see how bright it is! 

Letting the Light In,

Hannah! 

Me and My Parents

Over the years of living independently, I've had the same questions about my parents and me. I quickly learned we don't fit the mold and that's OK with me. People seem to be mystified and I thought this was a good time to demystify. Here we go! 

Popular Question #1:  Do you go home on weekends? 

No. I don't go home on weekends. I go to church, go shopping, and get together with friends on the weekends. Unless it's a special occasion, I'm not going home. 

Popular Question #2: Why don't you go home more? 

I love and appreciate my family more than words could ever describe, don't ever think differently! However, when I go home, I have to go to bed because my parents want to go to bed, I have to eat because my parents are eating, and I have to exercise more. I think you get my point. The dynamics instantly change Nobody wants to go to bed when their parents do at age 25. My parents will try so hard to stay up for me and I appreciate it, but they get tired. It's fine, but if we did it every weekend, we would be crabby. After living independently for 8 years (yes, 8 years), I've certainly developed a very particular, methodical routine for bed time that they just aren't used to. Appropriately, I get teased so much for having such a detailed routine. For example, my assistants are all around my age and understand why I want facial cleanser and all that girly stuff at night but this goes over my father's head. Granted, he is very cool when we're in DC and I need my makeup put on. Finally, I stay busy and don't really have time to go home. Also, my parents are busy too!

Popular Question #3: What do your parents do? 

They are kitchen designers who own two stores in Glenview and Wilmette. Yes, this is a shameless plug! I'm extremely proud of my parents, it hasn't been easy all the time. They have beautiful stores and we seriously have the best employees. The stores have made our life so much easier because they have incredibly flexible schedules and I have an appreciation for that. David is 20 and my little brother who attends the University of Kentucky. He launched a website and business this year. Genevieve is 16 and incredible! She participated in a summer program called Hands of Peace where they bring teenagers from the Middle East to the United States and they have dialogue about their beliefs. Genevieve was forever changed by the program and she wants to go into political science. She blows my mind! They all really blow my mind! 

Popular Question #4: Do David and Genevieve help you? 
My parents and I have left that up to them but I would definitely say yes. Genevieve has no problem getting me dressed now and David will definitely help me with stairs or anything physical. 

The most important aspect of our family is that we love each other unconditionally. You will never meet a family more loving or caring. We will tease each other mercilessly! I get teased for being so lovey dovey. David and Genevieve tease me about how much I get called an inspiration. It keeps me down to earth. They will always be there to remind me I'm just living my life.  No big deal (which is the truth)! 

I think my parents are good at keeping my morals and values in check. It's funny because I will call them when I know I could be doing something stupid and most of the time they will say you know better. Those calls are few and far between but I called them this month and they steered me in the right direction. By the way, Mom and Dad, I'm so grateful for your direction. 

A former babysitter once asked my parents what went so right? Personally, I think it's that we grew up knowing we could go to them with anything and they would help. The second thing that they did right (in my eyes) is that we never were discouraged to explore our identities. For example, they really encouraged me during my confirmation in college but they also discouraged me from putting the pressure on David and Genevieve to become religious. 

I wholeheartedly thank my parents for letting us be who we all choose to be. We're extremely different which I don't think people realize, but when it comes to morals and values, we're the same because we have incredible examples!

Proud to be a Thompson, 
Hannah! 

This post is in memory of Janet Cederquist. One of the most family oriented women we will ever know. We love you, Mrs. C!

 

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!