Rolling For James

Jeff and I had a close relationship when I was in college. He would frequent my dorm room at least twice a month. He was, indeed, the all mighty computer guy. I found him more dedicated to helping me than most "fix it" guys. My intuition kicked in and I started wondering. Did he have a family member with a disability? Did he have a friend in a wheelchair? Did he have an invisible disability? Ugghhh...what caused this devotion? I desperately wanted to ask but Jeff was a quiet man and I needed my computer fixed. For four years, I had Jeff's devotion. I overheard some phone conversations with his wife. It was about G Tubes. OK, there's a clue! When I would be at his desk, I would analyze pictures. He had some epilepsy awareness paraphernalia upon his desk but I still couldn't quite figure it out. Despite the reason, I always wondered how to repay him. When senior year started, this man finally opened up. James, his son had Cerebral Palsy and Epilepsy. Now, everything made sense. The puzzle pieces finally fit together. 

The summer after I graduated, Jeff friended me on Facebook. The pictures and videos unlocked a world of a sweet little boy who couldn't talk, walk, hold his head up, who had to be fed through a G Tube, and battles that my family never fathomed. I met James in November; I was enamored with this 4 year old who had been through so much in his little lifetime. A few months later, I arranged for my mom to meet James and his family. .His mom, Stacy and my mom laughed and cried that night. There are certain struggles that only parents of children with special needs understand. For example, finding a baby-sitter can be difficult. Most 16 year olds only feel comfortable making macaroni and cheese for dinner, not putting a syringe into a surgically made opening into a little boy's stomach. 

I have kept in touch with this family. In January, I got an e-mail about a fundraiser for James that was in April. I happily agreed to volunteer for this event. The fundraiser, "Rolling for James" was for an accessible van that James desperately needed. He needs a wheelchair and he's 4 now so lifting him in and out of the car is extremely difficult. 

The day of the fundraiser came and I was so happy to be able to help Jeff. He helped me for four years (OK, I've been in his office once or twice since graduation). The point is I was able to give back in an appropriate way. As for the attendance for this fundraiser, it made my heart melt! It had to be 200-300 people there for James! I was so happy for this family. It was unbelievable! To learn more about James and his condition, go to http://www.rollingforjames.com/. I'll always be Rolling for James.

I'm really happy with work. They are asking more and more of me which I love. I'm around individuals who are so successful and humble. I couldn't ask for more. This month, my wheelchair broke, Tiffany sprained her ankle, and other really crappy things happened. However, I'm healthy, my family is fantastic, my assistants are unbelievably dedicated to my independence, what more could I ask for? 

Keep on rolling. 

Hannah! 

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!