March Madness

My four assistants are wonderful and I have a roommate that is sweet and dedicated to my safety. I've never had this few assistants so all of us are very close and they have bonded with each other. Due to this closeness, they all can see just how stressed out I get when one of them can't come. Some of them just text each other and get coverage then tell me. Oh, that is the best! I LOVE those conversations! However, sometimes things go so bad that it's pure madness!

I just had spent the weekend at home since Tiffany couldn't come Friday (long story). I was exhausted anyway, so it was a blessing in disguise to go home that weekend. Boy, I'm really glad I went home, I didn't know the curve balls about to be thrown my way.

On Sunday night, Melissa, my roommate said she couldn't stay the night on Thursday. Theresa, my assistant immediately said, "I'll do it". OK. That fire was put out fast. Great! My roommate is a nanny so I totally understood that she couldn't say no. I made a mental note to tell my mom but was far from flustered.

On Tuesday morning, I opened my e-mail and found out that Lupe, my weekend assistant couldn't come. Lupe works all day Saturday and Sunday morning. The reasoning was valid but that didn't stop me from freaking out. Tiffany happened to be on duty at the time and looked at me as  if to say, "this is beyond crazy". Just a few minutes after, I get a text from Melissa saying that she needed more nights off. I am so close to crying. Tif looks at me and says, "don't cry". We called Theresa and her response to all this was "WHAT THE HECK". That did it! That had me laughing so hard! Tiffany and Theresa are trying to work this out but I keep laughing loudly! The truth was so crazy that you had to laugh.

While all of this is going on, we're calling my mom and updating her. We called her the third time and when we were about to hang up, mom said, "Do you think I can finish my Costco shopping without anything else changing"? We honestly didn't know!

Two hours later, the door guy came to fix my automatic door opener. Yes, on top of everything, my automatic door would not work. He was there for a hour and we didn't make progress because he couldn't figure out the problem.

So, Theresa stepped up big time and did all day Saturday and Tiffany did Sunday morning. What inspired me to write about this is that on Tuesday night, I had to go to a work event and put a smile on. Granted, I'm not the only one that does this at work but so many people see the polished, final picture of my day. This blog gives me a chance to depict what goes behind the scenes and sometimes, the utter frustration it is to be independent. In retrospect, this blog is why I choose to laugh instead of cry. It has always been a constant reminder of why I put up with the frustrations of being independent. It's a feeling of knowing that all of you will listen to me, not just hear me. 

The door guy came out Friday. We think we have a huge clue to the problem which is a relief. I did get something validating this week. My business cards from River North Business Association.

Now, this is independence!

  

All my Love,

Hannah! 

P.S. Melissa never ended up needing the nights off.

Let's Do Some Good

I know this blog post is fairly late but I don't apologize. I've been thinking about what to write. Unfortunately, I didn't have an adventure this month. It was pretty quiet which I am not complaining about whatsoever. However, today is Ash Wednesday and I just came back from a fabulous sermon. Father Tony had a powerful take on Lent and I thought I should honor what I just heard by reflecting on and sharing Father’s message. I will do my best to make it secular so don't stop reading if you are not into religious stuff. It's a good message, I promise. 
 
I rarely watch the news because it's always heartbreaking. It's always about violence, death, hatred, and all things negative. It's exhausting. So, what do we do about it? 
This is not an easy question to answer. Some would say the government has to change, some would say schools, some would say the media, and the list goes on and on. In my humble opinion, it's us. It's us who has to change and focus on doing good. It doesn't have to be an enormous change, it's the small stuff. I'll put myself in the fire for a second. Oftentimes, I judge others on the way they dress. I've always excused this behavior with the fact that I dress nicely because of my disability. People will certainly see my wheelchair then the outfit. I always hope that the outfit speaks louder than the chair. Although this hopefully makes sense to most of you, and resonates with some of you, it is not an excuse to judge at all. I try to stop myself and it's hard for me. It’s definitely a flaw. Needless to say, I will certainly work on that these next 40 days and beyond.

It's the small things. My brother will be going away to the University of Kentucky this fall and when I think about the advice I would give him, it would be to do the right thing when nobody is watching. It's so easy to do the right thing when people are watching. What we do behind closed doors translates into our character.

So, what small things can I do to make the news something people want to watch? A lot! 
We can do good. Its simple acts of kindness, it's refraining from judgment, it's all sorts of little, teeny, tiny things that will make our world a better place. 

This is a message from a 70 year old priest who has made this world a better place. Father Tony will retire in June which I can't say without getting emotional. You have inspired me for countless Saturday evenings, you have welcomed me as a reader, you have built a strong, united parish, and we will all miss you after you retire. We've talked about this but you will be the one to marry me! 

By the way and speaking of marriage, I am so ready to meet a man who I can share this extraordinary life with. Let's just put it out there and see what happens! 

I'll give you an update on the loves of my life right now who are, Katherine, Julie, and Jessi. 

Katherine came to visit this month along with my cousin, Lauren. It was such a great time! We went shopping, got manicures/pedicures, and everything girly you could do in a 24 hour span. Thank you to my family for making this possible. 

Jessi has been my friend since I can remember. She is quite the phenomenal young woman. She has a blog also at http://jlmpurplepad607.blogspot.com/. It's really a terrific blog.

Last but not least, Julie. She is doing well. She is still waiting for healthy lungs. It's been a full year of her being on the list and I am done! I want my Julie to have lungs. Julie has things to do, people to meet, places to go, let's get those lungs!!

It's time to get back to your busy life. Let's do some good! 

All my Love,

Hannah!

The Dress

“You know, Tif, don't put the dress in the suitcase. If you would please carry it and hang it in the car, that would be great. Thanks!”

Tiffany and I were headed to a River North Business Association winter party to celebrate the holidays. It was at Cuvee, a contemporary and elegant restaurant. We were also going to stay the night at a nearby hotel. Tiffany wanted to get dressed at the hotel; it would make her life easier so I figured, “why not”? We packed my shoes, the correct orthotics to go with the shoes, pantyhose, an outfit for the next day, my medicine, and of course, makeup. We were ready for an amazing night of getting people to tweet about the organization's events. 

We drove to the city without much traffic. We got to the hotel and settled in. Tiffany glances around the room and sheepishly said, "I don't think I grabbed the dress”. “Sweetie, call valet and see; I'm sure it's in the car.” Tiffany called valet and five minutes later, we find out that we left the dress on a kitchen chair. Tif called Tommy, her boyfriend that I am actually quite fond of and he would bring the dress. However, he was essentially too far away to come in time. My idea was to run to the nearest mall and find something on sale. We asked the concierge where the nearest mall was. If we walked, it would be 10 minutes.  

It was drizzly and freezing cold but I refused to waste time getting angry with Tiffany. She and I have done and been through some things that I can't even fathom telling other people because you had to be there. So, I am ramming it down Grand Avenue and over the State Street Bridge. Picture that! 

We finally get to our natural habitat, the mall. The only appropriate store was Anthropologie. We flew to the sales rack (bless after Christmas sales), and frantically started looking for a dress. The dress code was wedding attire. I had brown shoes so as every fashionista would know only dark neutrals were acceptable. I happened to find a dark red, A line dress that shimmered. It was exactly what I needed. Originally, it was $150; I got it for $48.00!  Steal! 

We run to the hotel and Tiffany gets me dressed, gets herself dressed, my make up done, and finally her makeup done. We were off! We had done all that in an hour. We still don't know how. 

I looked up towards heaven and mouthed "thank you". It was meant for my Aunt Diane. She died before my parents met. I wish I had gotten to meet my mom's sister. However, I know she is up there watching me and is my guardian angel. My guardian angel...now, that is a big job! 

The party was phenomenal and everyone complimented my dress. After every compliment, Tiffany and I would share a knowing glance. 

I was in the ER the night before for stomach pain. Mom and the whole family were going to University of Kentucky so we had to go to the hospital to make sure it wasn't appendicitis, a kidney stone, or an ovarian cyst. This was on my dad's birthday so I felt awful. Mom had super powers and packed the four of them for Kentucky after a 9 hour ER visit. I don't know how the woman does it! 

My 2014 has started out with a BANG! 

Love,

Hannah!

A New Year's Note

I am so proud of myself! For once, I completed my New Year's resolution.

In late January, I noticed that I was going to church every week. I thought to myself, "this is something in my control; I should make it my resolution". I am proud to say that I only missed five weeks.

Clearly, this was a spiritual goal. However, it became much more than that. It became about holding myself accountable to this goal every week. It was making time for that one hour of reflection. It wasn't easy some weekends. I am a busy person and eventually, I had every mass offered that was close by to my apartment in my Google Calendar. I would have to incorporate that one hour into my weekend plans. It was hard at times but extremely rewarding.
For example, after six months, I became a reader at my church. It would not have happened unless I made that year long commitment. I have read at church three times so far and now, my identity is shifting from "woman in the wheelchair" to "Hannah". I am slowly becoming closer to families-especially the kids. I have artwork from two kids from church in my apartment and their just SO cute! I also strengthened a relationship with a professor at Elmhurst College and ended up speaking to her class in September. Making this commitment has made me show my faith in a blunt way. 

A wonderful example happened over the weekend of 4th of July. I had to ask to go to church. I could have excused myself from my commitment and blamed it on a holiday but I held myself accountable. My uncle took me and as always, it was a great time with him.  

The only time I allowed myself to miss church was when I was with my family. I know God understands that my family is my everything. They are who I live for. They are my rocks in the storm of life. So, I had a good excuse for having to put my commitment on hold for a week. 
I will fulfill my commitment to God, myself, and all the good that I have received today. I asked my parents to drive me to mass. It's clearly the end of my formal commitment for 2013. I feel so accomplished. This year has been tough. I've seen Julie in the hospital too many times, I've had significant challenges with the coming and going of assistants, my roommate changed three times, my one of my physical therapists changed. It hasn't been easy. However, as you all know, I did get a job I love, I spoke multiple times, I got to travel to Minnesota with Tiffany, there are too many blessings to count! It was incredibly comforting to know I would have that time in church to pray, reflect, and be unplugged after a week of busyness.

2014 is here! Welcome it with a habit that enriches your life. Don't feel pressured to decide now. If you notice a good habit, keep it up! You never know what could happen! 

Thank you for your loyalty, support, and encouragement in 2013! You have no idea how much you keep me going!

My Sincere Love and Gratitude, 

Hannah! 

Sights and Sounds

As I listen to tons of Christmas music and shop online for the perfect gift, I can't forget what happened to our family on Thanksgiving Day.
 
Due to Genevieve, my little sister taking a sign language class, she learned about an opportunity to serve the deaf community. A church in West Chicago serves people who are deaf, hard of hearing, blind, or deaf and blind. When we arrived, Genevieve was tested immediately. She had to introduce our entire family. She was so helpful and knowledgeable about American Sign Language (ASL). The people that came were living in assistive living facilities. This was their Thanksgiving meal and more importantly, their celebration.
 
I couldn't help serve them food so I started talking to them. I want to make something very clear. Just because I am disabled doesn't automatically mean we can communicate. I would say 70% of the time, I felt like an idiot because I had no idea what they were saying. They could read what I typed in my communication device but understanding them was challenging. We would all look at these people like I am so sorry that I can't understand you. However, Genevieve and a couple of other people did interpret for us.
 
My mother was asked to help a woman who was deaf and blind to get her meal which meant deciphering what this woman wanted to eat. My mother has never looked more beautiful to me. She is so comfortable with helping anyone. Some would argue that it's because she had to help me for 23 years. I don't think so. I think my mom is just one of those people who is comfortable with everyone.
 
People who know my dad know that he can strike up a conversation with anybody. It wasn't any different that day. After helping serving food, he struck up a conversation with a man in his 70s. They talked for at least 45 minutes. It was very cool to see!
My brother, David who just turned 18 didn’t complain about missing football pick-up games. He liked being there which I’m really proud of. As for me, I met a phenomenal young woman who had the same mindset as me. We both were very happy and content individuals despite our obstacles. She would text me back after I would type something in my DynaVox. It was an instantaneous bond and she went home and read this blog. I knew she was cool after that!
 
In a busy shopping mall, I went back to Thanksgiving Day. An interesting thought entered my mind. Would they want to hear or in some cases, see the world? For example, would they want to see or hear about the Boston Marathon, the tragic anniversary of Newtown, the massive tornado that hit Illinois? Would they really want to see all the evil of the world? This thought prompted one question: if we were preparing for them to see the world in a week, month, or year, what would we do differently? Would we be kinder to each other? Would we be more compassionate toward our fellow man? Is the world prepared to be judged by people who can’t hear or see in a conventional way? We’ve come a long way. They wouldn’t see slavery or the holocaust, they would see a beautiful country with wonderful freedoms, they would hear the sound of children’s laughter, they would hear stories about how donating organs saves lives, and a lot of other amazing things. After thinking about this, I still didn’t have the answer but I think it starts with giving thanks and being kinder to our fellow man. I realize the deaf want to hear and the blind want to see, but what can I do to make the sights and sounds a little more beautiful than they already are?