Sweet Dreams, my Beautiful Daughter 9-16-14

This is a letter to my beautiful daughter, Alyson Tozer.
Aly,
From the moment you were brought in to my life, you were such a gift. Even as a young child, your insight on life was astounding. You would always tell me, "Momma, I just want to make a difference", and oh what a difference you made!  You had a magnetic light that attracted people to you. You inspired them to be better. Love more. Live more. To be humble and greatfull.Through all your battles, you never wanted anyone to feel sorry for you or to be sad for you. Instead, you encouraged others to make a difference. I am so broken and lost with out you. You gave me the opportunity to be your mom. You taught me so much more than I ever taught you. As I wonder on the earth without you, I hope I can find the strength to be half as courageous as you. I will help you finish your most treasured goals; publish your books-continue to raise awareness for organ donation- put smiles on the faces of children at the Phoenix Children's Hospital-have faith that a cure for CF is coming. I will try to make you as proud of me as I was of you.
Sweet dreams, my beautiful daughter.

Aly believed in the Miss America Organization. She believed that the women in this organization, can and will make a difference. These women are educated, compassionate and dedicated to their platforms. I found an English essay that Aly wrote and wanted to share part of it -
                "Every woman redefines the Miss America Organization in her own way.
                 No woman can represent the organization the same as another. There is
                 no perfect way to be Miss America. There are no shoes to fill.
                 Every woman walks in her own heels".

Thank You

This song moved to tears as I realized the reality of today. I cry happy tears as I hear this song and write this entry. It is so moving and touches my heart. I hope it does the same for my readers. As you listen to this song, allow the lyrics into your soul. I believe everything happens for a reason. This song came to me today; what a perfect glorious day for this moment. One year ago today, I could feel death. It was creeping into my life with no remorse and no way of control. I was almost gone. I could never wish that feeling upon anyone. It is true emptiness. It was my lowest place in my life I think I will ever reach. But as this song relays, "There's hope in front of me. There's a light, I still see it!"I know I have a purpose in life that I have not fulfilled yet. My time is coming. When I hear this song it not only reminds of why I held on when everything was almost gone, but it also reminds me of those who held my hand through it all. I wish I could thank everyone individually. However, I received so much sincere love from so many people I can't remember them all. To my parents, my family and family friends, my boyfriend, my best friends, my acquaintances, my doctors, my surgeons, my nurses, my fellow transplant friends, my pageant friends, my old high school friends, my previous teachers, my parent's friends, and strangers of all kinds, you are all my reason. Who ever you are, what ever role you play in my life, if you reached out to me any time in this last year, especially one year ago, please know you were and are my support and reason. Your love kept me going. When I doubted my future, my life, someone reached out to me. If you're reading this, YOU kept me going. Please never forget the power of love and hope that you can impact on a person's life. 

XO

-A

1 YEAR!!!!

In one week I will be celebrating an entire year since my transplant! I am having a family BBQ that weekend so I will be too busy to write a blog entry, so I am doing it now! It is incredible how much a person's life can change in so many various ways through 1 year. Since August 8, 2013, my life can be described in so many different ways. It's been celebratory, trying, relieving, gruesome, breathtaking (no pun intended...well maybe), scary, prideful, gratifying, and so much more I could name off. Most of all,  my life this past year has been beautiful. My life changed forever, not just that I had a new chance. I had to learn to live a new and different life. I had to learn to live with the extreme side effects of my new medications and how to manage them. I had to learn how to physically breathe again. I have come a long way but still have years of letting my guard down to allow myself to do things I was limited to before. I also have to learn that I can breathe but am not in the clear, I still have to monitor my health very close. Through my new life changes, I am so delighted and inspired by my new chance. I love my new lungs and the true feeling of breathing! I feel so renewed as a person. I view and feel the world and people so differently now, and in such a positive and giving way. I am forever thankful for my new opportunities and adventures! Become an organ donor and you could change someone's life forever. Become a hero today at donatelife.net

Love,
A

One Year of Hell

I have just about had it, but I have no other direction to go. It has been a full year since my life long nightmares came true. Here's my year summed up:

1. I was in Phoenix Children's Hospital for June and July of 2013

2. Home for 2 weeks

3. Double lung transplant at St. Joe's August of 2013

4. Lived in Phoenix August-November of 2013

5. Home for December and January

6. Back at St. Joe's for 2 minor surgeries February of 2014 

7. Home for 2 weeks

8. Back at St. Joe's for rejection and complications March, April, May, and now June of 2014

And here were are. I feel like I'm in prison. If you've never spent more than a week in the hospital, you couldn't possibly know what I'm feeling. At least in prison, there's less physical pain. I can't sleep, the food is terrible, the tv is terrible, I only go outside for 30 minutes a day because I have to be back for more medicine, I have lost all independence, I have no privacy. I thought I when I decided to get a transplant that my life would be better. That maybe I'd have less stress. That maybe I'd be a little closer to normal. That maybe I'd experience less pain. But in truth my life hasn't really changed. The only difference is, I can breathe. Which, please don't get me wrong, I am forever thankful that I can now breathe. But what's the use if I have no chance to really get out and live? My life is nothing I would wish on anyone. Between all of my struggles with my health in this last year, I have competed in numerous pageants, held 2 jobs, continued to go to school, and maintained a healthy relationship. Call me crazy but thats all I want in life. A typical, normal life. I don't ask for anything out of reach, or special. Why does that have to be so hard for me? Why am I challenged every day? One day I will have my answers. Life will answer my question "Why me?".  I know it could always be worse, but right now I am just going to be angry and upset about things. And I think that's okay.

-A

Opening To "I Survived"

I have been working on a memoir I'm titling "I Survived" for quite some time and today I put together the first part of the opening to my book. There is much editing and adding to be put into this but for a first jot down, I really liked how it came out. I thought I would share it with everyone. Enjoy!

Foremost I want to thank you for picking this book to read amongst all the other you could have consumed your time with. This book won’t be at all what you are expecting. This is not only my story, but also the story of others in the same situation. I will introduce you to a disease known as Cystic Fibrosis. I will refer to it as CF typically. Don’t know what CF is? I’ve got that covered also. You will read about the scientific aspect first before my story starts. I want you, my dear reader, to understand the disease thoroughly so there is no confusion or question deep into these pages. Like with all things, this disease has its positives and negatives. That is where I come in. I carry a perspective that is not seen in most of humanity. Through out you will learn I have always lived my life one day at a time, very literally. I worry about today, never tomorrow. It is to my understanding that most people living with CF have the same mentality. To sum up the quantity of the duration, I have lived close to half of my life in the hospital. I know what it is like to feel trapped in ones own body and mind. I have faced deep depression. I grew up as a special needs child. I know the terror of going into crowds. I know the feeling of death. I have felt the gratification of a new life. I have learned through trial and error to take no one and nothing for granted.

My goal is not for my reader to feel sorrowful for me, but rather to be inspired by my story and maybe learn a thing or two about themselves. Through my story may my reader possibly see a new light in their lives or an answer they have been yearning for. Most of all, this book is meant to fulfill a life long dream of mine. I have always wanted to make a difference in someone’s life. I have always hoped to help better someone by using my disease; whether that is through creating a fundraiser, sharing my story, mentoring, being in a video, or writing a book.

You are about to dive into the story of my life with Cystic Fibrosis. Day by day was very routine for me, which would make for a dreadfully boring book. No. I will rely on the major events that impacted my life the most as I grew up. Within each story there is a defeat and a victory. I feel I must warn you; detailing the life of someone living with Cystic Fibrosis is reassuringly frustrating, devastating, overwhelming and down right disgusting in every way possible. However, this disease has its beauty hidden. I was taught patience, tenderness, and gratitude. I learned to cherish all 5 of the senses. I learned when to speak up and when to comply. I learned deep self-respect. My favorite thing I was given by CF was my appreciation for time.

I realized many dominating things in my life. Everyone’s heard the saying “If you can’t learn to love yourself, how can you love anyone else?” In my late teenage years I realized that saying in a much deeper ideal. If I couldn’t love myself, not only who I am as a person, but also myself with CF, how could I ever be happy with anything?

“Today I choose to live my life with gratitude for the love that fills my heart, the peace that rests inside my spirit, and the voice of hope that says…all things are possible!”- Anonymous

Insight to Pageantry

Ever since I started competing in pageants a couple years ago I realized how life altering the experience is every time. I am so proud of the woman I have become because of the Miss America Organization. I give all of my confidence, poise and gratitude that I have achieved to my pageant experiences. I would like to however clear some things up to the public about Miss America pageants and back stage. I am always asked about the other contestants and how I get along with them. If they are self-centered and catty. The answer to that is that I have more girlfriends now than I ever have before. For every 20 amazing, giving, talented, brilliant young women there is 1 sour apple. I never thought I would meet such incredible and truly happy young women in my life. I am grateful for each friendship I have created. Another misconception about pageant girls is that they are unintelligent. That is so far from the truth. I have met women well on their way to becoming doctors in all fields, scientists, lawyers, world leaders, and so much more. Miss America is the world's leading scholarship organization for young women...give us some credit! We are also not affiliated with Donald Trump, Miss USA or Miss Universe. USA and America are very different and we like to keep it that way. So a little about competition and back stage. Interview is probably the most terrifying and gratifying experience of all phases. A 10 minute heart attack. Personally, this is my favorite phase. I love on the spot questions. Swimsuit is next. We work hard for the bodies we have, so it is not difficult to get out there. Yes, we use what is called butt glue. It's glue to keep the contestants from getting wedgies. We also use this on our tops and occasionally on our gowns. Last minute toning goes into this phase: crunches, push ups, lifting, anything to pump up muscle. Talent counts as the most in competition. Each contestant takes this time to shine in their own way. This lasts for 90 seconds. Evening gown is always so calm to me. I feel like all of the contestants are relaxed at this point. Evening gown is supposed to be beautiful and graceful, poised and elegant. I take a lot of pride in my gowns. Final phase of competition is on-stage question. Each contestant is asked 2 questions. This can be so scary. Answering on the spot in front of a crowd that is sure to disagree and judge your answer. Then the beautiful crowning moment. The truth is that every contestant that is on that stage deserves that crown. But its not about the crown, its about the journey. Yes, we stress ourselves out to hair loss, we wear the world's most uncomfortable shoes, we wear earrings that are too heavy, we read up on current events until we get headaches, and we probably spend too much money. But in the end, we are so much more than that. We are dreamers, achievers, believers, supporters, advocates, volunteers, and world changers. We are the women of the Miss America Organization.

Believe

Recently I have been having a slight bump in the road with my health. I have been battling a new infection in my lungs this last month. It seems to have really taken a toll on me but is being treated effectively. I have done 4 testing procedures to check for rejection and all have come back at 0%!! I am still being treated for rejection in case we missed it or it comes at a surprise. This means lots of steroids...great. I have been deprived of sleep and the mood swings are setting in along with the hunger, and attitude! Oh and you can't forget the puffy cheeks I love so much. I am feeling better though and am fully expecting my new lungs to be at the level they were at 3 months ago. With hard work and dedication I know I'll get back to being strong. In the down time I have had, I have really advanced one of my books and I am completely estatic over it!!! Also other great news; tomorrow I will be celebrating my 8 month Breathe Day post transplant!!! Staying positive is key in hard times. If I could give any word of advice it would be, if you're going to believe in anything then believe in yourself. If you do that, there is nothing that can stop you in this world.

XO-A