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! 

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!