Greatest Fear - December 2004

Greatest Fear

My greatest fear isn’t really something that I can put into words. I fear the unknown. I know that it may sound dumb but it is what I fear. I fear things I have never experienced and know nothing about.

I used to fear my g-tube changes. I didn’t understand the pain that is involved and I was very concerned about it. I now know that the pain is very minimal and that if we were to have a problem, we could easily insert a smaller size tube.

I am still afraid of being intubated even though I have been several times. The reason I’m still afraid is because each time different and is more dangerous for me. I get very nervous every time I am told I have to be intubated. Luckily I don’t have to be intubated very often.

There is song by Billy Gilman that was adapted from a poem by Mattie Stepanek that describes everything I feel. The lyrics are:

One of my greatest fears is It
I can't touch it, but I can feel it
It does not have a taste or smell,
But I can hear it in my spirit.
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
It is something I can't see
It can never possess me
It always tries to take control,
I can defeat it if I believe it.
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
It keeps running through my mind,
I have to fight it time and time
And time and time and time
And time again...
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
The more I understand about it
The less my world revolves around it
Then I can just live out my life
Without the fear of It

My fears are easily quieted by knowing more.

Happy Holidays- December 2004

Happy Holidays

So much has happened in the last year. I have traveled far and stayed close to home. I have gained some wonderful friends and lost some I thought I would have forever. I have changed in so many ways, some for the good, some not so good.

Over the past few years I have been really sick. From being home so much, I have learned a lot about myself. I have learned that I have a great deal of willpower. I can do homework, which takes the kids in school a month, in 3 hours. I have really learned a lot more being home. It has taught me that I can do anything I put my mind. I have also learned which friends I can depend on for anything. I have learned about my own inner strength and the strength of the people around me.

I want to thank everyone that has supported me and all of my endeavors. I have the most wonderful family and friends. I love each and every one of you. I hope you all have the happiest of holidays and a happy, healthy, and wonderful New Year.

Sad Things - December 2004

Sad Things

Ordinarily, this journal would be difficult for me to write, especially with it being the holiday season. I am usually eagerly anticipating all the wonderful gifts I will receive and can’t wait to find out what everyone else thinks of their gifts. This year is somewhat different. I rarely think of my gifts and can hardly believe that Christmas is less than 2 weeks away.

I don’t normally get sad. I think of all I have; a roof over my head, clothes, friends (although they are few and far between) I can count on, and family who loves me. I can’t help but feel sad sometimes. I have lost so many friends this year, be it to differing opinions or because they no longer had time for me. I can’t help but think of the times I lashed out at my friends and never said “I’m sorry”. I cannot dwell on the sadness though because if I do, I will only end up dragging myself down with the “what if’s”. Life is too short to dwell on the sad parts. I just have to remember that “there’s always tomorrow” and if I live to see tomorrow, I’m given the chance to change.

Regents Essay 4 - January 2005

Session 2, Essay B

H. M. Tomlinson said, “The right good book is always a book of travel; it is about a life’s journey.” I believe that what H. M. Tomlinson is referring to is that even if a book is fictional, the characters learn something about themselves or about life. I agree with what Tomlinson says. I have read many books that validate the quote. The two books that I think best represent the quote are “Miracles Happen” by Jean and Brooke Ellison and “The Me in the Mirror” by Connie Panzarino.

“Miracles Happen” by Jean and Brooke Ellison is an autobiography of Brooke Ellison’s life with sections written by her mother, Jean. This book provides both perspectives of a situation. Both authors have a strong-willed character and will stop at nothing to achieve Brooke’s dream of graduating from an Ivy League University. Brooke and Jean describe the almost constant uphill battles they had to face every day. The battles range from allowing to live at home, to attending school due to her disability, to going to college with her mother as her attendant. “Miracles Happen” is Brooke and Jean’s journey through life from age seven until Brooke’s graduation from college. Brooke and her mother learn about themselves along the way, which is the main theme of this book, self-discovery. “Miracles Happen” truly is a book about a journey in both the physical and metaphysical sense.

“The Me in the Mirror” by Connie Panzarino is another novel that is about Connie’s journey through life. This is Connie’s autobiography of the trials and tribulations she faces along the way through her life’s journey with Spinal Muscular Atrophy. She discovers how independent and strong she can be when she is faced with difficult situation. The theme of this book is also about self-discovery and ultimately finding out who you can be even if people don’t like it or believe it. Connie struggles for acceptance at every school she attends, first to a special needs school, then being mainstreamed in school and finally in attending college away from home. Each step of her journey is discovery of something new and something learned about herself and others. “The Me in the Mirror” is a journey of life, from the moment Connie is born until her life’s journey on earth has ended, complete with bumps and curves along the way.

As we grow up, our life takes us on a journey. We learn about ourselves and others. We struggle through life in certain parts while in others we slide right through. Each person travels through life at different rates and with different curves along the way. Like a good book, “The right good book is always a book of travel; it is about a life’s journey.”

Happy Things - December 2004

Happy Things

There are many things that make me happy. I am usually happy when others are happy. I am happy when I find out that a card I made brightened someone’s day, when I give a blanket to a child, when I visit a friend’s website and learn they are doing well. It’s the small things that make me happy.

I am happy when I get to go somewhere, other than the doctor’s office. I enjoy the first snowflake that lands outside my window. I love summer vacation! The trips to places I’ve been a thousand times before, are some how different and wonderful every time I go. Going to the water and swimming until I can’t swim anymore is always fun, until the next morning when I wake up stiff and sore. I get excited every time I receive a package in the mail, especially if it is something to give to someone else. Happiness is living in the moment.

I am most happy when I go and go all day long and come home and feel as if I could go for days. I am happy to wake up in the morning and know that I can do something new and exciting. I’m glad that I get to live each to it’s fullest potential and do again tomorrow.

Traveling with SMA - December 2004

Traveling with SMA

I love to travel! I have been told that because of my disability, I cannot and should not travel. Luckily, I’m not a very good listener when someone tells me I can’t do something. My caregiver, Brenda, and I have been almost clear across the United States. We’ve driven from New York to Wyoming, and numerous other places in between!

Brenda and I do our traveling by van. We do this because of the amount of medical equipment that I have to take everywhere with me. Road trips take a great deal of planning for anyone, but when you add in medical fragility and all the equipment that goes along with it, you have to be prepared for any kind of situation that could arise.

When Brenda and I decide that we would like to travel somewhere, be it to my grandparent’s lake house in New Jersey or to Brenda’s aunt’s house in Minnesota, we need to plan in advance. We must first figure out how long it will take us to get there. I can only travel five to six hours a day because of my health. If it will take us more than five to six hours then we need to find a hotel to stay in. The hotel must be accessible and have the option of a roll away bed or fold out couch; this is because I am transferred via a lift. The lift has to have room to go underneath the bed and most hotels have platform beds. Once we find the hotels and book a room, we need to prepare all my medical supplies. We need to make sure that I will have enough formula, feeding bags, ventilator tubing, and such, to make it to and back home from our vacation. We also must be prepared for the worst case scenario. If my gastric tube malfunctions then we need to be sure we have another tube available at a moments notice. Anything can happen so we need to be prepared for it.

After all the planning is through we wait, impatiently, for the travel date to arrive. A few days in advance Brenda begins to pack the van. She packs my medical supplies, our clothes, and other things we don’t use on a daily basis. When the travel day finally arrives, it is a packing nightmare. Brenda and I have traveled together so many times that Brenda now has it down to a science. Everything has its place and won’t move an inch until we reach the hotel.

I am the last thing to be loaded up. During the drive, I usually watch movies or listen to the radio. If it is summer, I sometimes listen to books on tape or CD. When we reach the hotel, Brenda has to unload all the necessities. By the time we reach our room, we are worn out.

When I travel, I get to see things and meet people that I never would have if I listened to the people who said I shouldn’t and couldn’t travel. Traveling is always an adventure, even if you are just going down the street. It is my favorite thing to do and I can’t wait for my next adventure!

Thanksgiving Thoughts - November 2004

Thanksgiving Thoughts

This Thanksgiving wasn’t supposed to be anything special. My family would come, we would eat, talk a little, laugh a lot, and everybody would go home just as they had come. Instead, this year I will be mourning the loss of a friend and be even more thankful for every day I have with my loved ones.

On Thursday, November 18th, 2004, Cole Daniel Webb went home to God. He went peacefully, for which everyone is thankful. I had just recently become very close with his mother, Kristin. I loved when I would call and she would put the phone up to Cole and he would babble away at me. I’m going to miss that. I’m going to miss the pictures of Cole and the updates on the new things he could do. As much as I will miss him I know in my heart I will see Cole again. For Kristin and her husband, Dan, I hope the time apart from Cole will only seem like an instant and they will be back with their Bongo Boy again.

So this Thanksgiving, when we sit down at our table, let us not forget the people who are hurting. Let’s remember that every day is a blessing, every moment a treasured gift, and every instant is one instant closer to seeing our loved ones again.