Taking Cerebral Palsy to the Hospital

Oh! Dear God! Dear God! It hurt. It hurt. My parents had just dropped me off because it was Sunday and class was Monday .With clammy hands I dialed Mom. It hadn't been two minutes before that we completed our nightly call. I had had a stomachache throughout the day but felt fine in the late afternoon. On the phone, I screamed in pain multiple times. This was pain I had never experienced before and knew something was wrong. My dad finally came and took me home. On the way home, I wanted to go to the hospital but Dad suggested I lie down first. Fine. I get home and my parents put me in the bedroom closest to them. I was vomiting all night. I also asked to go to the hospital but my parents did not take me. You have to understand that because I have Cerebral Palsy and involuntary movements; the ER can be incredibly difficult. My parents did have a point but I was the last person who wanted to validate it at 3 a.m. vomiting. Throughout the night, I would try to find positions to ease the staggering pain but nothing sufficed. It was constant pain and I could not do anything-that's how I knew it could not possibly be the flu. I felt like my right side was going to break because of the never-ending pain.

On Monday morning, my parents had called the doctor. The pain was better but still very much apparent. I went to the doctor and he felt my stomach. It hurt in all the right places for it to be a kidney stone, gallbladder, or appendicitis. I was sent straight to get a CT. Lying still proved to be difficult but manageable. From the CT, we found out I had a kidney stone!

After we found out about my 6 by 4 millimeter kidney stone, we had a decision to make. We could go home and schedule the surgery or be admitted that night, I was all for staying at that hospital. The night before could of been equated to the worst night of my life and I didn't want a repeat. One hour later, I was in a hospital room. My dad had been with me the entire day so Mom came and took over. I should mention that our doctor was brilliant enough to send me to the pediatric floor due to the staff being more open minded and they sure were. I met possibly the best nurse in the entire world. She was very understanding about certain issues that I had. For instance, I have a very difficult time going to the bathroom in the middle of the night so Mom asked that fluids be minimal until the morning. She understood the situation and made it possible. I was all settled by 6:30. I was in the bed, comfortable, and on morphine every hour and 45 minutes. 6:30 on a Monday? I quickly remembered The Bachelor was on. My dad wouldn't even watch it but a girl cannot miss her favorite show. Johanna, my nurse was no stranger to the Bachelor. As she was putting my IV in, she watched it with me. She was great at reading my nonverbal cues which was a blessing! All day I had had no appetite, however when the nurse gave me chocolate ice cream to help with the pill I needed to take, that chocolate ice cream was heaven especially knowing I couldn't have anything after midnight.

On Tuesday morning, I woke up to Johanna introducing me to my next nurse who paled in comparison. The doctor came in and told me what would happen during surgery. When the physician’s assistant came in and said, we're ready, etc. I got a little scared. This is when I thought, do they know about CP? Movement disorders? All those thoughts went into my head like a bed of nails. I did start to cry a little but at the same time, I wanted this thing out of me!

I could barely keep my eyes open after surgery. Between the drugs and lack of sleep, opening my eyes was a feat. They had put a stent in so everything would move correctly. When I went home, the stent was incredibly painful which they had neglected to tell us so I basically was bed ridden. I was on incredibly strong pain killers which made me exhausted. I didn't have my sense of humor; I would say Hannah disappeared for a week!

After a week had gone by, I had a mini surgery where they removed the stent. After 7 days, I finally felt normal. I cried with joy. Feeling normal had never felt so good. Reflecting back, I agree with my parents decision not to take me to the ER. It would have been more difficult than what we ultimately did. Bringing Cerebral Palsy to the hospital was hard enough, we didn’t have to make it more difficult!

It was the next Monday. My stent was out and I felt normal. I found myself in my dormitory lounge watching The Bachelor; my only concern was that it had a tremendous amount of homework. It was my normal routine and I had a new appreciation for it. I’m incredibly blessed to not have ongoing medical issues. I was in the right place this Monday!

Before I wrap up, I do have joyous news. Just today, my godson was born. His name is William James Endres. It is my cousin, Lauren and her husband Scott's son. I know everybody says they will make great parents but it is the epitome of truth for this couple. I couldn't be more thrilled and our family is simply ecstatic!

As for me, I start spring semester tomorrow. This semester will include my independent study and a lot of adventures, of course!

All My Love,

Hannah

The 12 Gifts of Christmas

I have already opened so many Christmas gifts. I have been so blessed this holiday season. I've decided to do my own version on the 12 Days of Christmas. This idea was inspired by a sermon I heard at the beginning of December.

The Twelve Gifts of Christmas

My first gift was the fact that Mom, Dad, and my former physical therapist, Jodi all came to Lessons and Carols which is a Christmas service I read at. Seeing Jodi brought me to tears. Whenever I see someone from my past at Elmhurst College that helped me get to where I am now, it is a surreal feeling because they helped me live my dream. I can't even think of words to describe that feeling.

My second gift was that the school choir did a Christmas concert. I absolutely love Christmas music and something as simple as hearing my favorite Christmas tunes lives is a gift.

My third gift was picking out gifts for my friends and assistants. Part of the joy of this marvelous season is the satisfaction that comes with finding that perfect gift for someone. I know Christmas is not about the gifts however, giving gifts elates me.

My fourth gift is that I have worked extremely hard this semester in my academics and I am finding it is truly paying off. Since a significant part of my identity is being a student, it is such a great feeling.

My fifth gift was that a certain professor and I really bonded over the semester and she actually was the one who approved the independent study for next semester. And it was really funny because after our last class together she rushed off and I was a little confused because she had left without saying good-bye. The next morning I received an e-mail from her explaining that she had been late to a meeting and was looking forward to working with me next semester.

My sixth gift is actually quite the story. I decided to go to a fraternity's Christmas function. I was all ready and dolled up and looking forward to a great night. My assistant Jessie and I head out to the buses and the fraternity had not ordered buses with lifts. I felt my heart sink to my feet; I knew it was not good. When the fraternity men saw me, it took about two seconds to realize that we had a huge problem. They immediately called the bus company. They couldn't help us. They tried getting the Elmhurst College shuttles. The accessible shuttle doesn't work on weekends. They tried local taxis. Nothing. I did not end up going. However, the humanity displayed that night was a true gift.

My seventh gift would be having the privilege of helping a friend. My friend Danielle from Camp Courage recently lost her boyfriend. My heart has been with her through the six weeks that he was in hospice. It was emotionally draining to see a dear friend in so much pain but she is being so strong. It's unbelievable. As for her boyfriend, Cullen, I can tell you with great confidence that the world has lost an angel. So many people help me, it was nice to be the one helping not receiving.

My eighth gift is the fact that I have been able to grow so much in my faith. It really helps on difficult days to have that strong faith. I will admit, it's the end of a difficult semester and I am exhausted and my faith is incredibly helpful.

My ninth gift is that my technology has been working. KNOCK ON WOOD. Yes, everything has been working except for a few small things.

My tenth gift is that my dear friends who visited me this summer, Nicole and Joe, from Camp Courage GOT ENGAGED! I am beyond thrilled for them. They will make such a wonderful married couple and eventually family.

My eleventh gift is receiving a new title. My cousin Lauren and her husband Scott have asked me to be the baby's godmother. This is not only an honor and a privilege but a gift! I take this role extremely seriously and I cannot wait to hold my Godson.

My twelfth gift would definitely be everyone who is reading this blog. I don't think you can understand how much you keep me going. I am constantly thinking about the best way to act, how to handle a crisis, how to be a good friend, and how to be the best person I can be because I know so many people consider me to be a roll model which is a incredible compliment. For that, dear readers, I am eternally grateful. I did not expect my blog to be what it is. I really didn't. I am so thankful that it turned out to be what it is. When something completely exceeds your highest expectations, it is a true gift that Webster's dictionary does not have words for. I hope I have inspired, moved, and somehow touched your lives. I do not write for myself, I write for others.

Have a Blessed Holiday Season!

Merry Christmas and I will write to you in 2011,
Hannah!

P.S. For all the Christmas party guests, I am so excited

Tradition and Speaking Come Together

I gave a speech tonight that touched many people. When I get an opportunity like the one I had tonight, words cannot express the way I feel when I give a speech. The College has a rich tradition in giving thanks and I absolutely love being an active member of traditions the college has. Here is the speech I gave tonight.


When I go home this Thanksgiving, I will have a mother and father who love me unconditionally, a brother and sister who are excelling in school and their extracurricular activities. My mother and father will enquire about my sorority, my grades, and other stuff that I care about. I have a family who not only listens but also cares very deeply about everything I do. I’m incredibly thankful for that fact alone, however, when I really thought about what I am really thankful for, I came to one conclusion. I’m thankful for being different. God made me different for a distinctive reason. I am still figuring out that reason which admittedly has its difficulties but the journey to finding out this answer has brought three glorious families to my life, and I have also had incredible moments due to being different.

I already told you about my most important family. My mother, father, brother and sister. My parents are the best parents God could of gave me. They push me to my greatest limits inspiring me to push myself everyday. However, more recently, I have realized that because I push myself so much at times, they have realized that they frequently need to remind me that I am not super woman. I honestly forget that at times. They have been brilliant enough to realize that their job is to have me look at what I really need to accomplish, whether it be that day, or in life. My brother and sister thankfully don’t see me as being different. When one of their friends asks, why is your older sister that way? They respond, because she is. It’s such a priceless moment for me because they speak the truth in that moment. My family and I have experienced humorous, sentimental, and some of the best family moments from me being different. . I would not trade those memories just so I could walk or talk, that is how I know God made me this way for a reason, God wants happiness for people and I do because of my differences. Now, I have a second family that I see once a year.

I go to a place called Camp Courage. It is a camp for people with disabilities. For that week, I feel completely normal because I look like everyone else. Everyone else is in wheelchairs, some use computers to talk, everybody moves differently like I do, and every single camper has also spilled an entire dinner on the floor because of uncontrolled movements. I am immersed in this world for seven days. I experience the feeling of rejuvenation and Camp is what keeps me going on difficult days where I feel a little bit too different. Like I said being different does have its difficulties, however, I have people who understand what it’s like which is a incredible blessing. So, I think God thought to himself, if I give this child hurtles to overcome, I better give her a good support system. And, He really did a great job because He knew that I needed to be at Elmhurst College, which is my third family.

The family I am with tonight is quite special. Being different at Elmhurst is not something that is frowned upon. It is encouraged and admired. I mean, I am on banners, you must like me. Nobody has seen my disability as an obstacle to get around, just a part of my life. At freshmen orientation, I was not the girl in the wheelchair, I was Hannah. Now, it is my junior year and I think I know just about everyone. Because I am different, when I attend events at the Mill Theater, they know exactly which seat I will be in, they know my favorite drink at the coffee bar, they know that I love pasta at the cafeteria, my classmates know which desk to move when I enter the classroom, and I could list hundreds of other things that people know about me because I stand out. With that being said, I would like to take this opportunity to thank each and every one of you for embracing a woman for what God intended her to be. This Thanksgiving Day, I am thankful for being different. I will end with a Bible passage. It is from Ezre, 10 4, Rise up; this matter is in your hands. We will support you, so take courage and do it."

I kept this post short and sweet because I have a paper to finish, two research presentations to prepare for, three essays, two journals, and one speech to write. However, I had to write in my blog because I simply love what it has turned into. My readers mean the world to me.

God Bless. Happy Thanksgiving!

All My Love,
Hannah!

Getting Inside My Head

First of all, my month was MUCH better. My wheelchair did not break, got my new computer, and everything else worked. I've been thanking God for that. One other thing (and I have many things) that I am thankful for in prayer is for thoughtful people in my life. And this is where my story for the month begins.

One of my assistants after much thought had to leave for the semester. I can only imagine what it must take to leave when a job has such a dependent nature. I really respect her for her decision. However, that did not make it easier on me. Eventually, I had to ask assistants to go above and beyond their call of duty which I do not like. Who is to blame? Nobody. It's the situation that will be a significant factor throughout my life. So, I did what I do when I need people. I prayed. I prayed for women to come into my life. In these prayers, I always say, if you bring them into my life, God, I will teach, inspire these people because I know they will reciprocate by their love and support. That is how my life works. With this comes instability.

I know when I say "instability", you think about possibly a broken family or something of that nature. Instability in my life happens when an assistant leaves me. I will admit to it being a somewhat rare occurrence but I always know it is a possibility. Because of this, I like a very rigid routine, familiar surroundings, same style of clothes, same genre of movies and music and the list goes on and on. I like knowing everything I can about the day, week, or month. Some people find this odd and I don't blame them. However, they don't have that voice in their heads saying, "she could leave". I know I am in the drivers seat of life and that will never change, however, I have to recognize the possibility. This particular story ends very well. A former assistant of mine had to leave in January because she was going to have a baby. When she saw my Facebook status saying that I needed assistants, she wanted to come back. I absolutely rejoiced in the fact that Mom and I did not have to train her, she could just jump back on!

Now that I have told you my story for the month, I have some anecdote...

At the homecoming formal, my assistant brought her boyfriend. It took me about one minute to realize what a gentleman he is. He put my assistant and I first the whole night. One of the most memorable moments was when he asked me to slow dance. He was being polite in asking and I appreciated it. He had been a counselor at a camp for people with disabilities so he felt comfortable taking me out of my wheelchair which was awesome. I can't really stand without my orthotics so he had to lift me. So, were dancing and my assistant is taking pictures and everybody who saw us was going how cute! Throughout the dance, he kept "heaving" me up like you would a toddler. Well, whenever I went up so did that dress! In the middle of the song, I give my assistant the "oh my God" look. It took her about a second to realize that this cute moment was quickly becoming a really inappropriate scene. She starts pulling the dress down and we safely got me in my chair without many people noticing! They apologized profusely but I was like hey, makes for a great story!

That night was Phi Mu's Halloween party. A sorority sister and I were talking about how excited we were and she starts asking me about my disability. She had some appropriate questions and I happily answered them. I will not disclose what we said because if you have a question, facebook, e-mail, or just talking works for me. Anyway, at the end of the conversation, she admitted to never asking because I was "just Hannah" to her. To me, that is like saying I love you times one million. It means you love me and you will take the junk that comes with. However, actions speak louder than words. That night, my friends especially the guys danced with me like they would any other girl. It was this rush of normalcy that I am usually deprived of. The dancing was wonderful but what was most exciting was the respect they showed me. That gave me confidence that I was portraying myself the way I wanted to which is so important in this day and age.

Before I wrap up, I have academic news to deliver. I had asked my advisor about an independent study. I wanted her to approve it immensely and also be the faculty advisor for the study. Her exact words were, I wasn't going to say yes but it's such a good idea that I have to say yes. I'm guessing that does not happen very often. My idea? It will be in the January 2011 post or, of course just ask me about it! In addition to that, I picked up an intercultural studies minor which is exciting! Oh, and a long, long time ago I mentioned a secret project I'm doing with Roger, a faculty member here, that is underway! I don't want to announce it in the blog until I know every detail. Of course, if you're super curious, just ask!

After getting inside my head and seeing which thoughts are important to me, now, I must pose the question: who do you need to hear the thoughts of? Your spouse? Your child? Your friend? Your sibling? Think about it!

Signing off as,
Just Hannah!

P.S. Happy Halloween!

Hope and Faith

Hope is the parent of faith. -Cyrus A. Bartol

My automatic door broke.
My computer broke.
My wheelchair broke.
My parents got me a new computer.
It is not compatible with my adaptive keyboard.
My wheelchair broke again.
My joystick fell off.

As you can see, it has not been an easy month whatsoever. Life has really been testing me to say the very least.

When my automatic door broke, it was move in day. I could not get in and out of my room independently. Due to this, I had to be a commuter student the first two days of school. My parents were incredible at having a positive attitude towards getting me to Elmhurst before 9:30 for two days.

My computer does have many issues at the moment. We bought a new one after calling all my special software companies besides my keyboard company, Intellikeys. It will not be compatible with the new laptop until 2011, and no, they did not give us an exact date. We are working on downgrading the new laptop so it is compatible with my keyboard.

My wheelchair broke the first Friday night of school. The back of the seat had tilted back permanently. Although I knew it was a quick fix my dad could do, it still was incredibly annoying.

I was standing up in my wheelchair. When I sat back down, the chair decided to go as slow as molasses. No joke. It literally took me 15 minutes to get across the parking lot when it usually takes me 2 minutes! Just to emphasize how bad it was, nobody joked with me about it. See, it's one of my trademarks on campus that I am always speeding and leaving my assistants in the dust. It's become a part of my personality. I am always on the move, never stopping, I like it that way. Not any other way!

Finally, my joystick fell off. This is actually kind of humorous. I had gone to use the restroom, sat back down, and there goes my joystick. Clean break. No reason as to why. It was like a sitcom.

While this all was happening (or breaking, you can choose which word is more appropriate), Phi Mu was in the middle of recruitment. Recruitment is difficult for me. It is an extraordinary amount of time and I have to reschedule when my assistants come. It is quite taxing on me but totally seems worth it when we get the new girls. And may I say we got 22 fantastic women!

During this difficult month, I have turned to faith in the Lord. I remember praying one night and saying, you must be putting me through this for a really good reason. Usually, after a rough patch in my life, God puts a wonderful person in my life that reminds me, yes, tangible things broke but it's the people in your life that make life good and happy. I kept reminding myself, all the people I love are healthy and happy. That is what really matters. People. I wrote a poem in all of the chaos.

He Listens

I listen to Him.
He listens to me
The door cannot be opened.
He gives me a house.
A machine does not work.
He gives me people who have knowledge.
My tangible companion breaks.
He gives me a repair man.
I start getting down.
He brings people to give me hope.
I complain about being busy.
He reminds me that at one point I did not have a social calendar.
I get frustrated with family.
He lets me hear of a broken family.
I get impatient.
He gives me more people to teach.
I don’t feel heard.
He brings people that need to be listened to much more than me.
He listens to me.
I listen to Him.

I hope you get something out of this poem.

Now, you're probably wondering, did all her technology get fixed? Between my dad and faithful wheelchair repair man, I am sitting upright and have a joystick attached to my chair not using any duct tape. My computer will be fixed soon due to the efforts of one incredible tech guy at my wonderful college and my hard working mom. And yes, I am speedy Gonzalez once again! Due to this month's never-ending difficulties, I really did appreciate the small stuff.

During recruitment, we talked a lot about sisterhood. My "sisterhood moment" during recruitment was when the recruitment chair, Christina was passing out name tags. She was calling out names, instead of saying, "Hannah", she said, "somebody put this on Hannah" She thought ahead. Even though, she had a million and one things to think about, she didn't forget to think of what was easiest for me.

Another experience was truly awesome. I was invited to go to a dinner about interfaith and it was extremely formal, etc. A few days before this dinner, I realized my assistant couldn't come until an hour into the dinner. I had come to terms with this and told the hostess about the situation. When I sat down, I had two students on both sides. I made it known that my assistant was coming in an hour so nobody would feel awkward. The two girls would have nothing to do with that idea. They fed me the entire dinner! They just would not have me go without eating and I rejoiced privately in the good of humanity at that moment. The really good part is next! I found out that one of my girls (my assistants) cannot continue to work with me this semester. I am terribly sad and so is she about the situation. However, I have to find more girls due to this. Guess who I asked? Yup, the two girls at dinner! One of them will do dinner on Mondays and the other is thinking about next semester. See! I told you God is watching out for me.

Even in the most frustrating times, I choose to see hope. A significant part of that is thinking of you, my dear readers. I know you know me to be positive in the darkest circumstances and I always will because as long as I have an audience who cares, I will perform to the best of my ability.

Have Hope and Faith,
Hannah!