An Incredible Mile

I woke up super excited as it was the day of the race. Morgan comes in at 7:00am and is tired but excited! I picked out yoga pants, an Easter Seals T-shirt, and my Victoria Secret athletic jacket. 

 
I see Mom and Dad in the parking lot and I am pumped! I find my therapists and we go stretch in one of the therapy rooms. We quickly stretched and Mom helped us bring the walker to the start line. Mom had to go to my little sister's water polo tournament but she took so many pictures before. 

 
10, 9, 8, 7, 6, 5, 4, 3, 2, 1, START! I started walking with Dad, Joanne and Tami who are my devoted physical therapists, and Morgan. About a block in, Jenn, my main caregiver shows up with her dog so I have quite the entourage! I'm surrounded by little kids who have unimaginable challenges in their lives. They have a lifetime of surgeries and therapies to go through. However, on that day, they were being applauded for their heroism. To have them acknowledge me by cheering me on was humbling. In my case, being an adult has been easier than being a child with a disability. I had the storybook childhood but I had a lot more doctor appointments because I was always growing and that meant a lot of adjustments with my equipment or people wanting to make sure everything was working as it should. Now that we have that all figured out, Mom, Dad, and I know what is important which is my movement disorders so I see a neurologist once a year and physical therapy twice a week. That is nothing compared to other individuals with disabilities have to go through. We dodged so many bullets and that was why I was able to complete this goal. 

 
When I was roughly three blocks away, I could feel the energy of the crowd. I start going faster and faster! My dad had to speed it up along with my entourage! I was fifty feet from the finish line and the crowd is CHANTING my name! Morgan and Jenn start taking pictures. It's my moment! I cross the finish line and its bliss! I did it in 46 minutes which is less than we anticipated which had been an hour. 

 
I got so many hugs and good wishes. I have to say thank you, thank you, thank you for the outpouring of love on Facebook and Twitter. It was unbelievable! Of course, thank you to my dad and other entourage members. It was an incredible mile! 


The real reward was a therapist coming up to me and informing me that her client now wanted to walk a mile next year. That feeling is priceless!


Of course, thank you to Easter Seals DuPage and the Fox Valley Region for 7 years of outstanding love and support! 

 
Love, 
Hannah! 

See You at the Finish Line!

The race is three days away. I walked a half mile and then a 6th of a mile so I feel ready. The factor that seems to affect me is the weather. So, say a little prayer that it's 60 or 70 degrees out and I will probably be much more comfortable and faster. If you want to come, thank you. I can't have too many cheerleaders, and e-mail me if you need the address!

 
Our Easter was lovely but different. My parents went to University of Kentucky to go to a Saturday night basketball game and picked me up Sunday afternoon for brunch. I missed David! Usually, I'm home by Saturday night and we spend Easter morning in our pajamas. I missed pretending the Easter Bunny was real for David and Genevieve even though that ended years ago. Mom made sure we all got Easter baskets though. To all the big brothers and sisters out there: enjoy every minute of the Easter Bunny, the tooth fairy, and Santa Claus. You'll blink and your little brother will be in college.

 
I had a special visitor, Keith! Remember, I wrote about his wedding back in October? He came here for a short time and we had a late dinner. He told me our mutual friend, Brian, is still in remission. We both are so grateful. Of course, I had to ask about babies! Nope, not until their 30. Looks like I will have to wait.

 
Actually, I take that back! Emily, my cousin is pregnant and due in September. We'll have a little baby at Christmas which I can't wait for! Speaking of good news, Julie is still at home. It's wonderful news! I still haven't seen her but once The Bachelorette starts, I'm sure that will change.
 
Thank you so much for all of your support regarding the FCC. It was overwhelming! I haven't heard from some teachers from high school and when they responded to my last post, it made me realize I am doing something right. That is what I want to do-make you proud! Glenbrook South and Elmhurst College gave me every tool to be successful and I plan on continuing to make you proud! 

 
See you at the finish line,
Hannah!

The FCC

I was holding my dad’s hand with butterflies in my stomach. We were on our way to O'Hare Airport to go to Washington D.C. I was so nervous! Would I like them? Would they like me? Most importantly, could I advocate for people like me who were so excited that I was on the Federal Communication Commission Disability Advisory Committee?

That next morning, I rode in an accessible taxi to the FCC Building. The previous night, we walked through Washington where I felt like all the game changers such as Abraham Lincoln were welcoming me. I was there to represent everyone who had similar needs as me. I kept that in mind as I rolled into the meeting with Dad taking pictures. He was really awesome! 

First, we introduced ourselves. I was the only one who told everyone when they graduated college. I'm definitely the youngest! They all were so excited to meet me which was calming. Here are some highlights: 

 - There was a gentleman who was 75 and he expressed that he thought the Disability Advisory Committee (DAC) would never happen. It made me realize how much our generation takes for granted. That past weekend, I was telling my sorority sisters that this was "something to put on my resume". Clearly, I was wrong. This was history. 

- When the president of the DAC who is deaf first spoke, he made it very clear that we were expected to work and produce results. It reminded me of sitting in Dr. Sullivan Morgan's college classes. She always would gently put her glasses on her desk, extend her fingers, lean back, and say softly, "I know you'll do it", even when I wasn't sure I could. Much like Dr. Sullivan Morgan, the DAC expects my absolute best and they will get it. 

- I didn't know this but this is the first Disability Advisory Committee the FCC will have ever. That hit me hard that I am part of something much greater than myself. People fought for this Committee and I have never-ending respect for them. 
I spoke to a lot of people. The common thread in every conversation was the resources for people who are deaf or blind are not well publicized to people who have speech disabilities. I see myself helping with that. They really were shocked to know how much I didn’t know about the resources deaf or blind people use every day. They have resources for making phone calls that could give people with speech disabilities much more privacy during a phone conversation.

I stand on the shoulders of many. The entire day reminded me of a young man who resided in Northbrook, Illinois. Eric Feinburg and his family advocated for people with disabilities all throughout his short life. Eric passed away at 21 due to medical complications. I was a junior in high school and I still think of him often. I know he was right there with me.

I'm excited to see where this takes me. I'm going to enjoy it and leave the butterflies behind in June. I have to thank my assistant, Jennifer for going and learning how to fly with me. She and I will take on this trip in June. We'll be great! 
I serve on the Associate Board for Over the Rainbow, an organization that builds accessible, barrier free housing for people with physical disabilities. They contacted my hometown newspaper about my new position. I was extremely humbled! The article is here: http://trib.in/1aHdWIa

On a joyful note, Julie is home! It was a hard 6 weeks in the hospital and ICU. I can't wait to see her. She is a fighter and praise Jesus for lifting my best friend up! Thank you for all your prayers and good wishes, they made a difference! 

Love, 
Hannah! 

The Home Depot

It's never dull with Hannah! 

My DynaVox mount doesn't get much attention but it's about to make its appearance in the blog.

I looked down and groaned. My DynaVox mount was swinging side to side. As Elton John would say it was like a candle in the wind. I had been ignoring it until it couldn't be ignored. I went out to the kitchen and told Morgan, my assistant for the night. I told her we'll call dad and he can guide you through this. It had happened many times in the past so I thought it would take a few minutes to fix. Oh, I was so very wrong! 

Morgan hung up with Dad and caught on really quickly. She had to take it apart and tighten the screws inside. I've seen girls do this so I really had all the confidence in Morgan. However, she was really struggling. We both thought to call a guy. Her friend, Danny was free so she got him to come over. Danny, who is an Elmhurst College football player, struts in as if to say, "I got this".

He really tried for a good 20 minutes. These are two screws, how hard can it be? It was so hard that Danny suggested that we go to The Home Depot and get new tools. I stayed back because the mount was so pathetic. 

They come back and I am hopeful that they can get the screws out so what was behind the screws could be tightened. We're just working on getting to the issue! Danny and Morgan put their best foot forward but I could see the screw was stripped. Dad offered to come the next day. That would have been it for the night except you all know I live for Plan B.

Plan B was to take me and my pathetic mount to The Home Depot. Dad would have to go anyway. We needed a tool to get the stripped screws out. So, my pathetic mount and I roll into Home Depot. It's already a show! I have the issue all typed out. Joe, the Home Depot guy got a crash course in DynaVox mounts. Morgan takes the DynaVox completely off the chair. Hannah Thompson is spread out at the hardware store! So, Joe goes and gets the tools. Meanwhile, a crowd is forming around us and Morgan has this face like yep, this is my job. Of course, I'm natural with a crowd so I'm chilling waiting for Joe. He comes back with some extensive tools. Joe gets the screws off and finally tightens the inside. He replaces the screws and he puts my DynaVox back together. Joe is our guy!

I did go to the manager about how kind Joe was. He was outstanding and fixed my DynaVox mount. I loved that he wasn’t scared off by the scene. Trust me, I am not your the typical Home Depot customer! Also, Dad didn’t have to come out the following day.

I enjoy sharing these lighthearted stories, it's my favorite type of post. However, my heart is very heavy tonight. Julie has been in and out of the hospital for five weeks. Two days ago, her mom called me and said that Julie had to be put on a ventilator. My veins got icy and I went numb. Jennifer, my main caregiver pulled over and I shared the awful news. She was really amazing as I just bawled. I just couldn't stop crying and shaking thinking that this was it. I had to prepare myself for the worst and hope for the best. Even her mom said, "Hannah, I just don't know this time..." I'm happy to say that three days later, she is off the ventilator! It's still a very long journey to where she was. I ask you to send good thoughts, pray, pray, and pray because I know Julie feels our prayers and God hears them. This is not easy--especially for Julie. I know my readers are all over the world, PLEASE pray for Julie.

All my Love,

Hannah! 

P.S. If you are suffering from a loved one having alzheitimers, my dear friend has a blog and a Facebook page dedicated to the cause. You can go here: http://silentvoicebattlead.blogspot.com/

Change

So, I have to start on a sad note. Tiffany is no longer working for me. It was sudden and neither one of us wanted it to happen. I'm heartbroken about it.

If you know the Thompson family, you know we come together and help each other. Mom was on care.com immediately because my life had to keep going. I couldn't curl up in the fetal position and cry even though that sounded very tempting. My primary caregiver knows every single little detail of my life from tricks to putting my braces on to where I sit in meetings at work. That was gone and I couldn't control it. I hated it. I hated that she was suddenly gone. The good news is that Tiffany and I remain friends, it's important to both of us. We've e-mailed and texted and I still love that girl!

While I was going through all this, I had to choose another primary caregiver. This was difficult because my first primary caregiver, Kim, essentially fell into our laps and was amazing throughout college and the year after. Tiffany was part time and wanted Kim’s position when she left. This time, all my part time caregivers are full time students or have full time jobs. With all this emotion, not to mention upheaval in my life, I had to get my head on straight to pick a new primary caregiver. It was possibly one of the hardest things I had to do.

In the interviews, I stressed that I like to do things quickly, explained that we would do a lot in a day, and I explained I insisted on being fashionable despite the obstacles my disabilities presented, and I asked as many questions as I could possibly think of. It was hard because I couldn't compare them to a lot of former or current caregivers. I've had so many people who worked part time that it's easier to picture what our relationship will be like. With only two individuals having this position in my life, it was very difficult and I knew my decision was going to impact my life significantly.

I met with a woman named Jennifer. She was the first I interviewed. I really liked her. She was so sweet, laughed a lot, and I felt like she could do the job. I had three interviews to go but I knew Jennifer was special. I did interview another woman named Rosalyn, I am giving her part time hours. This brings me to more sad news which is Theresa has to quit in March. It's a huge loss. Theresa and Tiffany were both phenomenal and I will miss them great deal! Monetta and Lupe, don't go anywhere! Please...
In the end, I chose Jennifer. We're done with our first week and she has been dedicated to learning my routine, making sure I feel comfortable, and learning about life with Hannah.

Life with Hannah included getting news from the FCC this week; I found out that I have been chosen to sit on the Disability Advisory Committee. Frankly, I'm shocked. I applied because Jodie from the Illinois Chapter of American Pediatrics Association suggested it. I spoke for her several times and we kept in touch. It really paid off. I really only told my parents so if you didn't know, you're in the majority. I didn't think I would get the position but I did! If you want to know more about the Disability Advisory Committee, you can go here: http://www.fcc.gov/disability-advisory-committee

Before I end, a huge thank you goes out to my mother for being so dedicated and finding caregivers. Another big thank you to my current caregivers who kept me independent even though Tiffany was gone. Of course, my best friends really came through and kept me afloat. I literally was visiting Julie in the hospital and she listened to my woes. Jessi took me to dinner and Katherine texted me throughout this whole thing.

I love you, readers, you keep me going! 

XOXO,
Hannah!