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! 

Independence to the Max!

I had an incredible week! I was crazy enough to go to Washington D.C. and Minnesota in one week. Crazy, I know! 

Jenn, my primary caregiver and I went to Washington all by ourselves. It went really well. The hardest part is breaking the chair down and duct taping it like crazy! I ride my chair to the jet way. Jenn walks me to my seat in coach and Jenn goes back to prepare the chair for the flight. The back of the seat folds over onto my seat, the seat belt goes over it, my joystick has a plastic cup over it which gets covered in duct tape, and we duct tape the whole joystick to the arm of the chair. It's a show! 

I was nervous about getting to DC and the chair just not working. I wasn't nervous about flying without my parents; I was nervous about the chair breaking and not having my parents there. That would have been an unnecessary challenge. When we landed and Jenn got me out of the plane, I sat in my chair. Would it work? Was everything OK? Would I be able to go to my meeting? I hit the power button, I pushed my joystick; IT WENT FORWARD, backwards, and side to side. JENNIFER DID IT!!! I was so proud of her. I was squealing with relief! I was so independent! Praise the Lord! 

The FCC Disability Advisory Committee meeting went well. I was not nervous; I was excited! I got to vote on plans that the subcommittees proposed. I am on the Relay and Distribution subcommittee and we discuss how to get services for individuals who are deaf and/or blind regardless of location or financial situations and a plethora of other issues but that is the gist of our meetings. It's incredibly interesting! 

After the meeting, we flew back to Chicago. We are there for roughly 36 hours so we're exhausted. I have learned to rest all day the next day. I did go to PT though out of respect for my body. I can't forget that my body is the reason why I can achieve maximum independence. Every time I go to PT, I'm saying thank you to my body for handling the incredible amounts of stress I put on it.

The next day was my 25th birthday. It was a wonderful birthday and thank you to all who wished me well. 

Morgan, another assistant and I went to Minnesota. It was so wonderful! I saw so many people who I only see once a year. I got to see my godson, Will. He always makes me happy. When you ask him what he wants to be when he grows up, he says, "EMT", or "ambulance helper". It's such a fun age and he wants to help me so it's all so fun! 

 Life is not always unicorns and butterflies. I got let go from River North Business Association. I am under the understanding that they replaced me with a team. I wish the organization well and I thank them for two years of experience and good memories. I am looking for a job. I am open to anything and am anxious to see what's next. I haven't been too chatty about it so if this is the first time you have heard of it, you're not alone! 

Let's hope for nice summer weather! 

Love,
Hannah! 

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!