Funny How Things Happen

Allison was walking down the aisle and I couldn't believe where I was! I was at Keith's wedding. This shouldn't be but it is and I was holding in a squeal! 

My Uncle Dave moved his family to Minnesota back in the 1990's. My two beloved cousins were moving to Minnesota. As a little kid, the adults couldn't talk about the move in front of me. I was heartbroken along with many other people. Let's fast forward to 2006. I was able to go to Camp Courage because my Uncle Dave, Aunt Sue, Lauren, and Joe lived close to the Camp. We all know how much joy Camp Courage brought me so I won't go into that. I met Keith in 2008 at Camp. We hit it off famously! There was an immediate friendship. 

We kept in touch over the years. Last December, I got a call from Keith asking me to go to his wedding. Absolutely! Since last month's post was all about logistics and scheduling, I'll leave that out.

When I got to the church, I noticed the accessible seats were in the very back. At first, I was frustrated because no one wants to sit in the back. As everyone was coming in, I saw every single friend coming in to the celebration. My heart sung when I saw Brian who kicked cancer's butt this past year. Last time I had seen Brian, he was at the Mayo Clinic in a hospital room. Now, we're about to witness a mutual best friend get married. I met his girlfriend, Natalie. If Brian doesn't marry Natalie, he will have had made the biggest mistake of his entire life! Natalie is so perfect for Brian. She ultimately met him because she is an oncology nurse. Brian, marry this one! 

Two minutes later, Keith taps me on the shoulder and I gave him the biggest hug. He came out just for me! I felt so special and appreciated. After Keith left, the wedding begun! The priest talked about how Keith and Allison couldn't even imagine meeting each other and how God worked to bring them together. I'm sitting in a church in Minnesota watching my friend from Ireland get married and I am as independent as I could be. It's so unbelievable when you really think about it. As Keith and Allison walked out of the church, he patted my arm which meant the world to me. 

During cocktail hour, Keith and Allison both smothered me with attention and being able to have time with my friends that I never see was priceless! Two other friends, Koop and Courtney who had just gotten married the past weekend were with us and they were still on cloud nine so it was absolutely blissful! 

Instead of clinking glasses to get Allison and Keith to kiss, you had to go up to them and ring a bell. Brian and I ran up there and totally made the couple kiss! Even though Keith and Allison were the bride and groom, they completely went into camp counselor mode when my wheel got stuck on the tablecloth! Close call! And I didn't run over Allison's dress…it's the little victories, I tell ya!

Natalie ended up feeding me dessert and over our conversation, I realized she had to be the one for Brian. We'll see...

After I came home, Tiffany's little dog passed away. I held her in my arms as she shook with tears. I had an assistant quit. Yep, it's been a difficult month. I've been really struggling because the assistant who quit just didn't show up. All my current assistants are furious and my parents are angry. I'm really struggling with this because I really liked her and wanted her to stick around but all I can do is be thankful for the assistants who have stepped up without question.  

After she quit, I said, "I hate having Cerebral Palsy" and found myself feeling depressed. As I write this post, I realize I wouldn't have gone to the wedding if I didn’t have C.P. which brought me to the fact that if I didn't have C.P., I wouldn't have a blog, I wouldn't have a speaking career, I would have a completely different life and I wouldn't want that for a second. Whether you're an assistant, friend, a family member, a fellow parishioner, therapist, or my Uncle Dave who moved his entire family to Minnesota years ago, thank you for bringing so much joy into my life! It's funny how things happen! 

Love, 
Hannah! 

The Profile of Superwoman

This is my schedule: 
Monday: Conference call with a work contact 
Tuesday: Business After Hours 
Wednesday: Skype with the Marketing Committee after physical therapy
Thursday: Meet my chaplain from Elmhurst College and then go to physical therapy 
Friday: Get my eyebrows done and Spirit & Truth
Saturday: Lector at Church 
Sunday: Nothing
 
The conference call on Monday is super easy because I don't have to go anywhere. 

On Tuesday, Tiffany and I have Business After Hours at night which is a networking event through my work. Monetta usually works Tuesday night. This is difficult because Monetta needs money but I need to feel comfortable at work and Tiffany and I have this monthly event down, it's systematic by now. I feel terrible but I need to make decisions that make life as easy as possible. As an employer, I grapple with that every time I have to make a decision like that. It's an hour and a half of going up to strangers and getting them to tweet about River North Business Association. Tiffany has known about this for a month because I have to remind her every week in my Saturday e-mails. Yes, every Saturday I e-mail every single assistant and explain what we'll be doing during their shift. It's exhausting but extremely necessary. They need the addresses and how I expect them to dress for certain events. This event went very well as usual.

On Wednesday, I have physical therapy then I shower and put on a nice top for the meeting. Showering isn't necessarily exhausting but it's an event. It's certainly not jumping in the shower like people who are able bodied may do. Tiffany gets me dressed and fed, and then I check the agenda for the meeting. The meeting is going well until I sneeze and it becomes a bloody nose. Are you kidding me? I take care of it which takes a good five minutes because of my lack of control over my hands.

On Thursday, I have a meeting with Kevin, who runs a mentoring program for inner city kids. He asked me to mentor. We need to talk about what it would involve. Meanwhile, I ask Tiffany to grocery shop while I talk to Kevin. It's Thursday and I need food for the weekend. Jewel is a block away from where we’ll be meeting making it a no brainer.

On Friday, I get my eyebrows done. Now, I have the best salon ever. My eyebrow lady is so patient with my body but it's still stressful because being still is so difficult for me. My mother gave me sensitive skin so the Starbucks barista says, “you just got your eyebrows done, they look great.” I thank her and ask how her real estate classes are going. She has a test this weekend. I make a mental note to ask about her test Monday. 

All throughout the week, my toilet has been running nonstop and annoying the heck out of me! So, I'm relieved when I hear silence Friday afternoon. Oh joy! 

On Fridays, I always go to Spirit and Truth. It's a young adult adoration group. I have to be silent for a half hour. This is a really good thing for me. It's as if Jesus is saying, TAKE A BREAK, SUPERWOMAN! I appreciate the time to rest and center myself. 

After Spirit and Truth, Theresa and I program Prayers of the Faithful in my DynaVox. I lector the next day and I need to program a lot in. This takes an hour.

On Saturday, I have to wear my good clothes all day so I'm ready to go to church. This took years to realize but my life is so much easier if I don't change clothes right before an event. As for speaking, I use two different types of software when I lector so when it goes perfectly, I am a happy woman! 

So, the inspiration for this post came from two very different conversations. The first conversation happened when I went to a different church. I had gone home for the weekend so I had to go to Sunday night mass instead of Saturday. I had to e-mail Theresa and make sure she could come at a different time. After mass, this woman comes up and thanks Theresa for bringing me to church. I was so mad! That was when I realized I don't fit the profile of being superwoman. To the world, I don't fit into that box. Talk about irritating! The second conversation was the exact opposite. A woman who I know very well at my parish came up to me and said,” how do you do it, you always look so put together!” I respond by saying, “thank you, but it's easier because I am not a mother like you are.” This was obviously a very humbling comment.

 It is my belief that so many people assume that my assistants do the scheduling. It’s also assumed that my parents help schedule. Nope! I work out every logistic, detail, and execution of each appointment or event. That first lady made me angry. You can’t really say anything because the comment comes from a good place. After thinking about it, I decided that blogging about it was the answer. There’s so much that people just don’t know or would ever think about what I have to do to make my life work. I love explaining my life to the world.

It should not be taken for granted that my assistants are extremely diligent and utterly amazing about being there for me. Currently, I’ve had two assistants for two years, two assistants for one year, and one assistant for 6 months. That is rare and I am extremely fortunate. I have the life I want because of pure determination, great people, and my Google Calendar!

Love,

Hannah!

P.S. I dedicate this post to the super women in my life. You have taught me everything I know, and you all look a little different! 

London and Paris

I went to London and Paris last month. It was something else! From the picturesque view of the gardens of Kensington Palace to watching the Eiffel Tower light up the sky, it was unbelievable! I will share what my family maybe has told you or I may share what we wanted to forget about the trip because it certainly wasn't all perfect but that is what makes a blog post. 

We had just walked outside the airport and found our accessible taxi. It’s a steep ramp so I gun it, right? Vehicles are lower in Europe so I slam my forehead into the top of the van. Mom says, "Oh my God, are you OK"? I take a good minute to answer because it really hurt. "I'm OK". Just got off an eight hour flight and now I have a good headache. We're in London so I'm great! My family headed to the hotel, we want to start touring. My parents laid me down to get me dressed, David had laid down too and two hours later, I hear Mom yelling, “We slept two hours!” The time change was brutal on all of us so we were the napping family for two hours. It's not like David, Genevieve, and I are under the age of 10, but we obviously needed sleep! We ended up touring the front of Buckingham Palace which was glorious but I am pretty sure my eyes are half closed in every picture that day. 

We toured the Towers of London. It was great but my wheelchair ran out of power. We didn't really understand why but my parents said let's just enjoy the Towers. That meant they all had to push me through London. Let me clarify. David did 90% of the pushing. While we were at the Towers, there were a lot of stairs in the attractions. Dad and David were amazing. Dad walked with me until it became too hard with stairs. David and Dad also helped me souvenir shop for the royal trinkets. They are good guys!

This was a really cool experience but I have a friend that I met through Camp Courage that lives in London. Cool, right? She met my family and me at our hotel to go tour Kensington Palace. Since we hadn’t figured out what we needed to charge the chair, my DynaVox wasn’t charging either. I was so frustrated! Mom did her best to talk for me and Genevieve can talk to anyone, so it was a great day even though I couldn’t talk to her. Lizzie did a great job in a difficult situation. She didn’t know my family but she did everything she could to make it a good day. Kensington Palace has a pond and Genevieve loved to fake push me in the pond. We had fun with the manual wheelchair!

The best part of London was Buckingham Palace! First of all, we had finally got the chair charging so we were all euphoric! Secondly, I got to go through the FRONT GATES of the Palace just like the queen! I’m not a young woman in a wheelchair exaggerating. I’m not! The legitimate Palace staff opened the Palace gates for ME! Mom and David got to come with. It was the most surreal experience of my life! In fact, I remember thinking I don’t know how I am going to find words to describe this moment in the blog post and I still don’t have words. We went into Buckingham Palace, did the tour, of course, I was amazed! Everything in the Palace is perfect and you travel back to the 1800s.  You really do. If I were Princess Kate, I would request for Tim Gunn to come and make it a little more modern but I suspect her apartment with Will is modern. After the tour, we got in the elevator to get out and catch the Chunnel, and the elevator stops working. We’re stuck and the Chunnel leaves in a half hour. Mom is sick to her stomach with worry and I’m thinking if we get stuck in Buckingham Palace, that’s cool! I have no problem with that but Mom wasn’t as calm. We were taking the Chunnel to Paris and it was leaving in a half hour so we were extremely stressed. Long story short, we missed the Chunnel.  We were actually there just in time but the station attendants made us wait for the next one coming in an hour. We got bumped up to first class. Nobody complained.

I didn’t love Paris like I loved London. However, we did get to get a tour of Paris from a lovely woman who has a physical disability. Her name was Alexandria. She was married, extremely independent, had a godson, managed her own assistants, and had so much spunk! Although we didn’t get to talk about our lives much, it was cool to meet someone whose life I wanted mine to look like. I want that husband, I want that important job much like I have now, I want to keep managing my assistants (although it is the hardest job I will ever have), I want more godchildren (Lauren, Scott, Emily, Jacob…get cracking), I want independence. According to my daydreams, she has the life I wanted when I am in my forties. I don’t meet many people who are as fiercely independent as I am and Alexandria definitely is.

I am able to end this post on a really great note. David, my brother loves college. He joined a fraternity, FarmHouse. I’m extremely happy for him. We’re texting every day, I like just checking in with him and making sure he’s happy. For all the college freshmen out there, you have begun a journey that will forever change you. I wish you all the happiness in the world. Heck, start writing a blog, you never know where it will take you!

Cheers,
Hannah! 

P.S. Mom and Dad, thank you for the trip of a lifetime! 

Julie got lungs! David graduated! But What Happened in Between is Life!

You all heard about Julie getting lungs and David graduating. That was fantastic and two huge events in my life. However, the little things that happened in between are great stories which are what the blog is all about. 

All my life, my parents have reminded me to get up and stand. At 24, I take it upon myself to take care of myself and get to standing every couple of hours. So, it's a Sunday afternoon and Theresa is coming in two hours. It's an ideal time to go to standing in my wheelchair. I decide to put on some music and standing. I can't think of anything more boring or how much I don't want to but I know I should. I start pushing the button to stand and it stops. The wheelchair is dead.

I didn't mention that Mom and Dad are in Bora Bora. They are 24 hours away! Dad just can't come and switch me to my backup wheelchair. Thankfully, Tiffany understands as my main caregiver, she becomes the point person. I'm in the squatting position and my joystick is dead. Getting to my phone is fairly difficult. When I call Tiffany, I'm cursing my music! I have to turn the DynaVox up so she can hear me. Tiffany finally understands the position I'm in and says that she will call the other girls. This is a relief! Tiffany can't come because she's an hour away, Caitlin, my new roommate is also an hour away, Tiffany called Theresa who was about to come in a few hours. Thankfully, Theresa is 20 minutes away. So, now that I have someone coming, I think about what the heck to do. I have the personal cell number of my main wheelchair guy, along with two other repair men. Also, Jessi, my lifelong friend who also has Cerebral Palsy has a phenomenal mother who could problem solve, and at the "front lines", David, my brother, and my uncle are ready to help. After I think about my support system, I feel better. Theresa comes and I said, we will call this wheelchair guy first and then if he doesn't answer, we go to friends and family. God bless that wheelchair guy because he picked up on a Sunday night and walked Theresa through figuring out what was wrong. I was mobile and happy! 

As if that event wasn't enough, two days later, the fire alarm went off in my building in the afternoon. I was by myself but I was in my wheelchair. I literally went on auto pilot. I was working at my desk so I pressed my emergency button and got out! I felt the door (yes, I remembered my fire safety) and got out of my apartment. Once I got out, I realized I hadn't ever been told what to do once the emergency button was pressed. Naturally, I looked for neighbors. I met some in the hallway. They suggested the elevators and I hesitated because I was always told NOT to use the elevator during a fire. If you think about it, an elevator is a box in a building that is sealed shut. It is not safe in a fire. However, it had been five minutes and the elevators were still on so I figured it was not really a fire. I got down safely and got the firefighters attention and he explained the maintenance guys had triggered it. I was upset with how the firefighters handled it because you would think that they would make an effort with a younger woman in a wheelchair. One of them should have sought me out and explained what was going on.

My final story is a doozie!  I was sitting on the couch with Tiffany a week later, and we were expecting a wheelchair part to be delivered that day. So, when Tiffany heard my phone ring and it was UPS. She runs down and when she gets back, she is locked out. I am on the couch with Tiffany’s phone unable to open the door. All I can do is laugh. This is the cherry on top! After two minutes, I finally realized how serious this situation was. So, Tiffany is screaming through the door for me to crawl to get to my wheelchair and push the button to open the door. I awkwardly get to the kneeling position and realize the ottoman moves. Oh, I’m in over my head! My movement disorders make my knees move on the carpet and I am hurt. I get myself lying down on the floor and see two open wounds on my knees. I’m down for the count and close to tears. My knees hurt like hell. Tiffany asks if I am OK. No. Did you hurt your head? No. I can hear Tiffany’s heart beat slow down when she knows my head is OK. Tiffany is knocking on people’s doors. Finally, a neighbor lets her use the phone and they get the landlord. The landlord is actually on his way. Thank God! Ten minutes later, Tiffany busts in and is at my side. “Ouch”, I said on the verge of tears. “I’m so sorry” Tiffany exclaimed! “I know sweetie, you didn’t mean to” I silently say to her. Now, the question is, can I still wear that dress Mom bought me to David’s graduation party?

Life is going to happen whether we want it to or not. My mishaps didn’t end when I went to London and Paris. It was a phenomenal trip but not all of it was smooth. Stay tuned! It’s good, I promise!

Till next month,

Hannah! 

P.S. To all my friends in Minnesota, I am coming next week! If you want to get together, e-mail, message, or tweet to me, you know how to get a hold of me! 

Dear World,

Nana was tying his gold and blue tie and Mom put on his navy blue gown. David, my little brother was graduating from high school. Yay! To get to wheelchair seating, we had to go through all the graduates which was SO MUCH fun! I was screaming, Genevieve was congratulating them, and it was such an unexpected joyful moment.

Before the ceremony, we were told not to catcall. Yeah right! Genevieve, my little sister and I would SCREAM when David walked across the stage. We did!

After the ceremony, my brother was presented with a memory book. It was filled with letters from loved ones. Genevieve wrote a very touching letter about how he is her role model. As for my letter, well...

Dear World,

My little brother is going out in the world soon. I love him so much so I want a word with you before he meets you.

I remember when he was born. My 6 year old eyes saw her little brother and loved him instantly although his belly button was gross! I rocked him in the cradle sitting in my red chair and loved being a big sister because David had stolen my heart. Fast forward thirteen years later; we are in the golf cart in Spring Green going WAY too fast and with our little sister screaming. Even though it was dangerous, I felt safe with his hand on my shoulder. That is David; he’ll make you feel safe in any situation.

When he was able to bench press at 250, he started taking me on roller coasters! We have a blast! He will put his arm around me and we fly. For the record, he would scream more than me. When he was old enough, Mom and Dad let us go tubing together! It was fun and we went really fast. When we got off the tube, I flew off the tube and we got to see Mom walk on water.

David is ready to take you, the world ON! He is a mixture of sophistication, strength, loyalty, and he is so much fun! He wants the best for everyone around him. He is willing to lend a hand to anyone he meets. David is hands down one of my favorite people in the world. He has never treated me differently because I have a disability. I am so grateful that I have him as a little brother. Nobody else would do! 

As you teach David about all you have to offer, be kind to him. You will challenge him in ways he cannot even fathom. With every challenge, he will rise above the occasion and genuinely impress you. 

You should be anxious to meet him. He’s sure ready to meet you!

With Much Love,

Hannah!

P.S. Every time David gets down, please remind him that I love him more than the moon, the stars, and all the fish in the river!