Family Matters

I am walking on the treadmill. Things are going well. My left hand hasn’t decided to fly off the handle yet and my body is pretty relaxed. I’m in a good rhythm which feels great when you have a body that does not always cooperate with your brain. In fact, it rarely cooperates. Good rhythm, good music, feel my heart beat. Dad is enjoying the game while I listen to Glee. After a few minutes, I feel it. My shoe lace comes undone. Dad is all too aware of this as my body stiffens to protect itself. Dad turns the treadmill off and has to go to the side. This makes me nervous because I feel most secure when someone is in back of me. Also, the handle bars on the treadmill position my hands vertically instead of horizontally. I feel more comfortable with horizontal bars because I feel more centered and in control. Dad goes to the side of the treadmill and quickly ties my shoe. My arms are tired from holding on so tight. Dad turns on the treadmill again and I am walking but not with that good rhythm I had three minutes ago. Five minutes later, I’ve reached one tenth of a mile .It is Success for the day. Dad reminds me that he expects me to do it again tomorrow. I already knew that.

My sister Genevieve and I are baking in the kitchen. By baking I mean I watch and she does everything. For twelve years old, she is amazing. I mean, this kid can cook! “Back up, I need to get in the oven” she says! I move. She remarks, “Ugh, I need you to move again”! I move. The third time I need to move Genevieve just grabs my joystick. Her requests are filled with dramatic tones and heavy sighs. To anybody else, this would look like Genevieve is mean when in reality, I enjoy it immensely. The way she treats me is the way that any sisters would treat each other. She calls me out on things most people would be scared to because of my disability. Oftentimes, I think she is the only person who truly treats me like I don’t have a disability. I love my sister for giving me a hard time. It sure keeps me grounded.

David, my brother got his license last week. While this may scare some of you, let me reassure you that he is a good driver. The day after he received his license, he took Genevieve and me to Starbucks which was a kind gesture on his part. After he got in the car, he asked me if we could make the trip longer by going to our high school. I was fine with that. It was only three blocks away and I am the first to understand the pleasure of newfound independence. After we got to the school, David doesn’t turn around. Instead, he decides to go to Baskin Robbins. No. No. No. We barely have Mom and Dad’s trust. Let’s enjoy it! We end up in the Baskin Robbins parking lot. I insist on calling our parents. I hear them say that I had the idea. When did I suggest this? I didn’t get angry, the feeling in the car was too happy. Dad said to go to Starbucks. I’m not surprised. We go to Starbucks and have a great time. Our first driving trip was a success and I can’t wait for the ones to come.

I have referenced this moment in a previous post but my mother knows me so well which I am thankful for. When one of my best friends, Julie was in the hospital, I had a week of stress and sadness. I didn’t know what was causing the incredible emotion. I called my mom crying for essentially no reason. She encouraged me to really think about why I was so emotional. Since I was so sad, I took her advice to heart. If you remember, I ended up going to Desiree and I was able to talk about how sad I was. It is incredible that my mother understands my emotions so well-even over the phone. In that light, she is my best friend.

I have always referred to my family as my rock. They support, love, and guide me through life. I hope I show them that family matters!

XOXO, Hannah!

My Last Christmas at Elmhurst

I received one of the best gifts that Christmas can offer and that is to give back. I gave back to my community in a very unique way. I've talked about this Elmhurst College event before but this year I had a chance to put my heart and talent into Lessons and Carols. Lessons and Carols is a composition of music and readings of the story of Jesus’ birth. I have had the honor of reading from the Bible for this event for the past two years. In June (yes, I really mean six months ago), I e-mailed the Chaplain at Elmhurst and asked to please do a reflection during this service. Chaplain Scott agreed and I was thrilled. And then after a few months, a question loomed over me: what do I say? I thought about this quite a bit. What message was good enough? What did God want me to say to those many, many people including my family, great aunts and uncles, friends, therapists and neighbors from home? This was my family and my Elmhurst College family who are the most important people in the world to me. After much thought, reflection, and prayer, I came up with this.

When I was a little girl growing up, we would drive to the airport and there he would be; my grandfather would be at the airport with his Santa Claus hat on ready to hug me. It is probably the fondest memory of childhood I have. Seeing my grandfather who we called Pops, ceased the anticipation of Christmas time. It was here! I got that warm, fuzzy feeling because I knew everything was OK because it was Christmas. We would bake cookies with Nana, and Pops would act like he was not interested but twenty minutes later he somehow became the king of the kitchen. Pops died in 2006 right before Thanksgiving. His untimely death caused for a very difficult Christmas. I didn’t feel that rush of goodness throughout my body despite my best efforts. The man, who had caused the anticipation of Christmas to end, was now with Christ in heaven. It was not fair to me or my family. The next Christmas, 2007 was better but certainly still melancholy. I did not have that rush of goodness like I did when Pops was with us.

In 2008, I saw that this event lessons and carols was happening and I decided to go. After I walked out of this very chapel, I got that rush of goodness back. It felt like a part of me that was missing for those two years had finally returned. I got that warm, fuzzy feeling back instead of feeling chilled like I had been feeling for the past two Christmases. Many of you know me well enough to know that when I like something, I get involved. I have been a reader for this service for the past two years and have the honor of reflecting with you today which I thank Reverend Scott and Chaplain Kevin for. This service brought the anticipation of advent back. This is a priceless feeling. We wait for so much in life. Whether it is for a loved one to get well, for soldiers to return home, or for a sign that the season of advent has begun, God makes it worth the wait, and He tends to have a discreet way of healing your heart. He led me to a service that filled my heart with what could only be known as the Christmas spirit. Needless to say, I still very much miss Pops especially at Christmas, but since I know exactly what I wait for each year, the waiting is not that hard and I don’t worry about feeling numb, because when each and every one of you light your candles at the end of mass it will fill my heart with joy, and I cannot thank you enough for that. God bless.

This is my last Christmas at Elmhurst so this was the beginning of bittersweet moments. I'm glad I had the opportunity to thank Elmhurst for four wonderful Christmases.

I hope you’re filled with the Christmas spirit like I am. I've been listening to Christmas music since Thanksgiving dinner ended and haven't stopped. I'm hoping that my family can make it to the church in Elmhurst that I got confirmed in and to see my precious godson on New Years. I wish you the merriest of Christmases, happiest of Hanukkahs, and a joyful Kwanzaa! And, of course a happy New Year!

Spread Some Joy,
Hannah!

P.S. Only 5-6 more posts of Hannah's College Adventures left...it is unbelievable!

Back to Basics

Readers, I have shared intricate stories to you about my life. I know for some of you the way I do things is still a little foggy. Frankly, if you feel that way, I don't blame you. I want to focus on how I communicate this month so you can understand my daily life better. Recently, I sat down with future speech therapists at Northwestern University and answered their questions about what using a DynaVox feels like. The students had some good questions.

The first question was how do you keep people engaged while you prepare your messages?

This is an interesting question only because I don’t really have to keep people engaged. In some circumstances, I do let people do other things while I type which makes it less formal and awkward. I find that this doesn’t take away from the conversation or make me feel bad. In general, my family and friends know if they are going to talk to me whether in the coffee line or a serious conversation, they’re going to have to wait and have patience. Needless to say, I need patient and understanding people in my life.

The second question from the students was what do you do if someone ignores you or acts like they don't think you understand what's going on?

If someone ignores me it’s usually not on purpose. My assistant gets their attention and we have that conversation I want to have. If someone were to ignore me on purpose, well, they are just not going to be in my life and I probably wouldn’t think of the person again. Now, if my friend is running late for class and doesn’t stop to talk, it’s different; a conversation takes a good five minutes with me, it is OK. Also, if someone treats me like I don’t understand what’s going on; that is probably one of the most infuriating things I endure due to my disability. If the person has to be in my life for example, a professor, I will have several conversations with that person to get my point across. I know people such as my caregivers will help me with that person. If it is not a person I absolutely need in my life, I get away from them as fast as I can without being rude. I am a lady but they really don’t belong in my life, I have so many people that love me unconditionally and they deserve my energy, not the other way around. Although I have many loving people in my world, I always have room for more.

The third question was do you have any tricks you learned to put new people at ease?

The one trick that came to mind first is that if they seem nervous, I let them look at my screen. It's very funny because I can totally predict reactions. I always get, "look at that", and "that is so cool", or "technology is amazing", and my personal favorite, "your screen is pink". Those reactions do help break the ice. Sometimes, with kids it’s helpful to let them type in their name and understand what I have to do to speak. I also encourage other users to have empathy for the other person. They probably have never seen a device before, give them time to adjust.

I ended the Q&A on this note:

Honestly, my advice to users starting out would be to be patient. It can be frustrating and time consuming. I love being witty and sometimes my witty comments won’t make sense two minutes later which is frustrating but I still am going to be witty because it shows who I am as a person. Even though my professors understand that my comments take a while, and I’ll end up saying something that is not relevant to the conversation anymore, that is not a feeling I like. On the flip side, people have embraced how I communicate. I meet with a chaplain every week and we have grown close. So, one day he pointed out that every time I say, "it sucks", I giggle before I press the message button. Now, it is a cute thing I do. So, you can see it either way but I find that my habits using the DynaVox show people my personality. Essentially, it gives you freedom and lets other human beings understand just how crucial communication is, that is really a treat at the end of the day.

I did have my DynaVox break yesterday and I was immensely frustrated. It felt like someone put duct tape over my mouth. It was only for about 18 hours. Thankfully, my therapy clinic has an assistive technology department and they were able to get my voice back.

I hope you had a wonderful Thanksgiving and are welcoming the holiday season with warm hearts.

Love,
Hannah!

P.S. I am relieved and joyous that my friend Julie is home. She is still very much on the mend. Unfortunately, she cannot come back to school until the fall of 2012 which saddens me but when she does come back; she will be ready to take over the school in her own way!

Show Up to Life

I met Julie on the first day of the semester. This painfully adorable freshman was my neighbor. I could see she had some sort of disability. I didn’t want to point that out first. Hey, we both have disabilities so we should be friends…turns me off like crazy! When we said goodbye, I told her if you ever need anything, my door is always open. Not 24 hours later there was a knock on my door. It was Julie…in tears! After letting her in, the crying didn’t stop. She was having trouble making friends and feeling like she was not fitting in. After that night, the knocks kept coming. I didn’t mind this whatsoever. She was having a hard time! This was the rare time that I could be the one giving and not receiving in a friendship. Over the course of our time together, I learned that Julie has Cystic Fibrosis (CF). I also learned that she did not let that stop her from doing anything! Julie made the Women’s Choir, had been Tracy in the musical Hairspray, we are so much alike! It was Monday of Columbus Day and I got a text from Julie saying that she was in the hospital. She assured me that everything was fine and it would be only a week. My immediate response was asking if I could come and visit. I visited Wednesday afternoon. I was not going to just say I’m your friend; I was going to show her. When I visited her brother, Kevin was with her. Kevin was not the first family member I met. I had met both of her parents, her sisters, and her older brother. I had managed to get involved in her life in a very short amount of time-I have that tendency. After one week, she was not back. I knew this was not good. It turns out that Julie needed a bilateral lung transplant. The transplant was successful. She is still on a breathing tube but is doing well. I’m not doing too well though. I was having a bad week this week, I was stressed, and just down which is not like me at all. My mom was starting to notice that something just wasn’t right. Later in the week, she asked me to really think about what really was wrong and to do something to make myself happy. Desiree, from Student Activities mentioned that she had her wedding pictures in her office. That would make me happy! After I said good-bye to my mother, I headed over to her office. With a big grin on her face, she asked how I was doing. I replied by saying “OK”. “It’s Julie, isn’t it?”Desiree asked. I started bawling. I miss her so much even though for the circumstances she is doing great. I had buried this problem under the stress of school and being busy. Trust me, the stress I’ve been under has been great and I have two tests, one oral report, and a paper due this week so my unusual mood could have been validated by just those two things but I miss Julie so much. I just want her back in my room giving me Crystal Light and talking about normal stuff. For now, I have to go on her Facebook page and ask her brothers questions about how she is. I’m glad I showed up to be her friend that Wednesday because it’s been a long month.

I can’t just have a sad story in this post! Come on…you know me better! My cousin Lauren, her husband Scott and my godson Will were coming to visit. After a lot of e-mails, we determined that it was too difficult to get me back home. Yeah right…like I was going to let that stop me! A week prior to when they were coming; I asked my assistant if she would drive me home. She said yes! We got up at 9:00, ate a quick breakfast and headed out. I should mention that all week I had been talking to my mom like I wasn’t coming. I was having so much fun with it! We get to my brother’s football game and I start screaming. They all came running and were so surprised to see me! Showing up was so much fun. It still brings a smile to my face thinking about it. We get the most out of life when we SHOW UP!!!

Another exciting thing that has happened this month is that I was one of the 50 students that won the Lincoln Academy Medallion. Northern Illinois State describes the honor very well when they say “Annually, an outstanding senior from each of the four-year degree-granting institutions of higher learning in Illinois is chosen to receive the prestigious Lincoln Academy Student Laureate Award. Lincoln Student Laureates are honored for their overall excellence in both curricular and co-curricular activities. The NIU Student Laureate should have an NIU grade point average of 3.5 or higher and should have demonstrated leadership in extra-curricular activities”. I will get to “represent the university and attend one of the most distinguished gatherings in the state, a special ceremony to be held in late early November in the House of Representatives of the Illinois State Capitol. Governor Pat Quinn (or a designee) will present each Student Laureate with a Lincoln Academy Medallion and a modest financial award. The ceremony will be followed by a luncheon” (niu.edu). This award has nothing to do with NIU; however they provide a very good description for a blogger who is very tired.

I have had a busy and fulfilling October. I couldn’t ask for more…well, except for Julie knocking at my door. Please pray or send good thoughts her way.

In Gratitude,

Hannah!

An Alumnae

The word "alumnae" never meant anything to me until today. Last week, I got asked to speak at Glenbrook South High School. Today, I had the privilege of speaking to the entire school for the 50th anniversary. It was a complete honor.

I am here to tell you that you are so lucky to be in this auditorium today. If you are here today, it means that you are part of a community that is dedicated to your success. I stand here today as a personal testimony to the dedication and commitment the teachers and faculty have to their students. I graduated from Glenbrook South in 2008, and am now a senior at Elmhurst College. When I was a student here, I bonded with the staff. Although countless people and experiences helped me grow as an individual here, there are three specific moments that shaped me into a successful college student.

The first moment was when I realized Miss Susan Flickinger along with our outstanding special education department really thought I could attend college. With my circumstances, the thought of college was very abstract, never impossible, but very abstract. I didn’t know how it was going to look like. Miss Flickinger, Mrs. Kelly Lowery and Miss Julie Manning started talking about me going to college as if it was inevitable. Together, they shifted the gears in my brain to thinking “maybe I will go to college”, to “I will definitely go to college”, it’s just a matter of how. Just to give you an insight of how far that idea has taken me, I am on the Dean's list, in two academic honor societies, and am having the time of my life. Glenbrook South teachers are brilliant. Don’t just go to class, learn from them.

The second moment was when I made the speech team. Now, let’s be real when you think of a student on the speech team, you do not picture a student in a wheelchair using a computer to talk. Mr. Scott McDermott and Mr. Mark Maranto somehow saw a speaker. I am eternally grateful for their insight. I won at several tournaments and now my major is communication studies. I want to become a motivational speaker with my degree. I am here to tell you that this would not be a reality if Mr. McDermott and Mr. Maranto had not believed in me. They had to go out of their way to have a student like me on the speech team. Let your coaches be your inspiration to be better people. Mr. McDermott always said, “be brilliant”, I use that phrase every day now and it’s been four years since I was on the team.

The third moment was when Mr. Wegley personally e-mailed me and said I want your feedback on how we can integrate students in special education with the students who are in regular education. That e-mail said a whole lot more to me as a student. It said I value your opinion, I value what talents you possess, and I value you as a person. We had one meeting; it turned into two which turned into regular meetings. That relationship which was not necessary at all turned into a relationship with Dr. Shellard. My relationship with Dr. Shellard would be best summed up by him stalking me in the hallways asking me to do the Variety Show. Good times and very late nights! These two incredible men showed me how to be a good and effective leader, That is an invaluable lesson.

Reflecting on my time here, I stand in incredible gratitude for what GBS did for me. They are genuinely here for the students. Take advantage of that. Take advantage of a community who wakes up every morning just to serve you. Glenbrook South, thank you for the past, the present, and future.

I was incredibly humbled by this experience. The local newspaper wrote an article about this event and they were all too kind to me! You can see it by clicking on this link: http://glenview.suntimes.com/7904761-417/gbs-alumni-return-friday-for-50th-year-event.html. I finally understood the benefits and privileges of being an alumnae. I want to keep being considered a "distinguished alumnae" of my high school. To me, that means making choices that coincide with the values of Glenbrook South.

I have had a busy yet wonderful month. My speech for the American Pediatrics Association said Glenbrook South were definitely amazing highlights and I am deeply thankful for the opportunities.

Your Glenbrook South Alumnae,
Hannah!