Edmond Life & Leisure Article

There is an article about me and my participation in the Mrs. Oklahoma pageant in this week's Edmond Life & Leisure paper. You can read it HERE. I want to thank photographer and writer, Anne Schmidt, for giving me this coverage.

Edmond Life & Leisure, Anne especially, has been so good to my family and the CF Foundation over the past few years by regularly putting information about the disease and our local fundraising events in their paper.

Right after Hayden was born, my friend Adrienne Nobles wrote a story about my family as a freelance writer for EL&L. Anne came to our house to take a picture of the three of us for the cover of the paper. We instantly connected with her and she immediately loved Hayden.
Since then, Anne has always made sure our gala photos had a page in the paper and she has come to the event every year to take pictures for us - free of charge. I can't tell you how much we appreciate Anne and Edmond Life & Leisure for helping to spread awareness of this disease and all we are doing to fight it.

Here is the story, written by Adrienne Nobles, that was the paper's cover story in October 2006:

It’s a quiet evening at the Siler house in Edmond. Ryan Siler prepares for his next day at work from his computer. Newborn Hayden Siler sleeps peacefully, rocking in her swing. And Alyssa Siler is catching up with an old friend (a.k.a. this writer) over a glass of vanilla ice tea.
As for me, I am discovering a new side of strength and determination in my friend as she and Ryan face a battle for their daughter that is anything but quiet and peaceful.
“What I have realized is all the paths I have taken have not been for me to be a famous Broadway star or a successful model. Rather my life has been preparing me to be a mom to Hayden, to use the tools, experiences and connections I have to help save her life.”
Though you couldn’t tell by looking at her, Hayden Siler is one of approximately 30,000 Americans who have the life-threatening disease Cystic Fibrosis or CF.
For people with the disease, a defective gene causes the body to produce a faulty protein that leads to abnormally thick, sticky mucus that clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, making it difficult for a person to absorb nutrients in food and can block the bile duct in the liver, causing possibly permanent damage in approximately six percent of people with CF.
Nurses knew almost immediately after Hayden was born on July 5 that something was wrong.
“The nurses only left her on my chest for a couple of minutes, saying they had to get her to the nursery as soon as possible,” explained Alyssa.
Hayden’s abdomen was distended, meaning, at the very least, she had not passed all the toxins out of her body.
She was taken to surgery the day after she was born. Doctors removed eight inches of her colon because of a blockage of bile in her intestines and soon suspected she had CF.
What followed was an agonizing week wait for test results and visits to Neo-natal Intensive Care Unit to see Hayden.
“But every time we were feeling down, it was Hayden who lifted us up. There she was hooked up to all kinds of machines, and she would just look up and smile at us. She showed amazing strength from the beginning.”
That show of strength from little Hayden is a trait she must have inherited from her parents.
The week after the Silers learned of the diagnosis and took Hayden home, Alyssa contacted the local Cystic Fibrosis Foundation office, offering to volunteer and help any way they needed her.
They called a few days later, enlisting Alyssa’s help in securing silent auction items for their Breath of Life Gala, one of the foundation’s largest fund-raisers, set for Oct. 13 at 6:30 p.m. at the Oklahoma City Civic Center’s Hall of Mirrors.
“So, I’ve been using the three hours I have a day between feedings and breathing treatments for Hayden to get these silent auction item,” added Alyssa.
Luckily, Alyssa’s past experiences have made getting the items a bit easier. She’s used her connections from her past experience as a model (you may have seen her featured in the Style section of The Oklahoman), as a judge on “Gimmie the Mike, Oklahoma” on Channel 9, as a Miss Oklahoma top 10 finalist, as a music theatre performer (she appeared in several productions while a student at the University of Central Oklahoma) and as an advertising sales person (she sold ads for the UCO Performing Arts Season brochure as a student) to successful get a variety of items donated for the auction.
Celia Palmer, director of development for the Cystic Fibrosis Foundation’s Oklahoma City office, is excited to have found a resource like Alyssa.
“The thing that continues to impress me and touch me about the foundation is the commitment of the families. On top of the thousands of dollars they spend in treatments and care for their children, they are the first ones to step and donate their time and their money to find a cure for this disease.”
She emphasized that the foundation makes a point to take care of every dollar that is donated, and that 90-cents of each dollar given goes directly to research and treatment of the disease.
“When you donate to the CF Foundation, you are literally adding days, possibly years to a life. In the past 20 years we have been able to increase the average life expectancy for those with CF from 25.6 years to 36.8 years thanks to the research funded by others’ generosity,” added Celia.
One way — and possibly one of the most enjoyable ways — to help is by attending the Breath of Life Gala. In addition to a full Italian buffet, the opportunity to bid on a variety of silent auction items and music from Oklahoma’s own Chris Hicks, guests will get to see nationally-renowned performance artist Michael Israel perform live.
Israel describes his work as “Picasso meets Cirque du Soliel.” Basically, he completes a painting on a spinning canvas, choreographed to music. His works have been purchased by many celebrities and usually sell for $10,000 to $60,000 a piece.
Israel will auction off one of the works he completes live at the gala, plus guests will get to witness the debut performance of one of his pieces created especially for the CF Foundation, inspired by the “65 Roses” story.
“The 65 Roses story comes from the child of a CF volunteer. She was working on an event for CF and her child asked, ‘Are you working on that stuff for 65 roses’ because he couldn’t pronounce Cystic Fibrosis. So, now, 65 Roses has become a symbol of hope for us,” explained Celia.
Tickets to the Breath of Life gala are $75 each, and Celia promises you will be glad you came.
“Your gifts match someone else’s efforts. Your gift funds the research needed to find a cure.”
Right now, in fact, there are more than 25 promising therapy candidates for CF in clinical trials and laboratory development. Any one of them, or a combination of them, could make a profound impact on the lives of people living with CF, people like little Hayden.
”This is not a hopeless disease. A cure could be found in as little as three years — we are seriously that close,” Alyssa said.
Until a cure is found, Alyssa and Ryan believe one of the best treatments for Hayden is a positive outlook and all the love and attention they have.
“I don’t live wearing rose-colored glasses, but we refuse to focus on the ‘what-ifs.” We are taking it day by day. We want to give her the best life possible, and that means celebrating that today was an awesome day with no complications.”
For more information on Cystic Fibrosis, visit the foundation’s website at www.cff.org, or to purchase tickets to the Breath of Life Gala and to find out about other local fundraising and volunteer opportunities, call the Oklahoma City area office at 787-0056.

Meet my inspiration....

Hayden Presley Siler. Isn't she precious? Now don't let this picture of a sweet and somewhat shy looking little girl fool you. While she is every bit as sweet as the picture implies, her personality is better captured here.....

She's not yelling in this picture. There isn't a mean bone in her body. She is just crazy energetic and more full of joy than any toddler I have ever met. While there are some days where all that energy overwhelms this mama..... I love it. When I look back at her beginning and what she has been through in her short 3 1/2 years, all that energy suddenly becomes a reminder of her strength and endurance - of a spirit that refuses to let anything hold her back.

Every pregnant woman dreams of those first moments when their child is born. They dream of getting to hold their baby for the first time. They can't wait for the chance to study their little face. They just try to imagine the feeling of that instant and very special bond that only a mother and child can have.

I had all those dreams. But after a picture perfect pregnancy and delivery, everything went horribly wrong and suddenly, all those dreams vanished. Immediately after Hayden emerged into this world, the doctors noticed that she wasn't crying. Instead, she was grunting and, on top of that, her belly was extremely distended. I remember so clearly the nurse coming to tell me they needed to take her to the nursery to look at her while trying to sound as if that was the most routine thing ever. Taking her to the nursery to be looked over turned into needing to put a tube down into her stomach, which led to Hayden's pediatrician coming in my room with a somber look on her face. She explained to me that Hayden obviously had an intestinal blockage of some kind because her stomach was full of bile that hadn't been able to pass through. Then came the words.... "She's going to need surgery, Alyssa".

Ryan and I were prepped for the fact that it probably was a twist in the intestines that has formed during pregnancy. They would go in and correct it and that would be that. We would move on with our lives. They also mentioned something about meconium ileus and cystic fibrosis but didn't spend much time on it. The chances of that were slim and they didn't want to scare us.

So Hayden was taken by ambulance to Baptist hospital and Ryan went with her. I was stuck at Lakeside Women's hospital...without a baby. I finally talked them into releasing me early so I could be there when her surgery was performed. Even though I couldn't pick her up and hold her, everything within me was needing to comfort her. I needed her to know I was there.

When the surgeon was finished and came out to talk to us I knew. I knew it wasn't a twist. It was written all over his face that it was something more serious. Then those words meconium ileus and cystic fibrosis came up again. Only this time it wasn't in passing - it was a probability.

The meconium ileus had hardened part of Hayden's intestines so badly that they were destroyed. He removed about 8 inches and reconnected everything back together. He told us that the genetic testing of her blood would take about two weeks to come back with a definitive answer but that we should start preparing ourselves. Our daughter most likely had CF.

Here is a picture of her in the NICU after surgery. I look at this and still can't believe that's her sometimes.She was in the NICU for two weeks and, while she was there, we were visiting with doctors about what CF was and what it meant for our new baby girl - the baby I so desperately wanted to pick up and hold. I heard "thick mucus in the lungs" and things about her digestive system being compromised but all the information was kind of running together - until I heard "life expectancy of 37 years old". I think that's the moment something changed in me. I instantly had a sense of "that's what you think". In my head I was thinking "that is completely unacceptable". I suddenly had a determination to do something about it. It was here that I felt God telling me "I chose you. I chose you because I knew you would do something about it".

Shortly after the blood test came back and her diagnosis was official, Ryan made a decision for our family that we still adhere to today. It showed his strength in this difficult time. He said that we were not going to be a "woe is me" family. That isn't the way to live life and it wouldn't be fair to Hayden. All it would do is hold her back. So the decision was made - instead of putting our efforts into moping or feeling sorry for ourselves, we were going to do what we could to beat this ugly disease.

We took home a two-week-old baby and began giving her enzymes with a spoonful of applesauce before every bottle. We started chest PT and breathing treatments. We did everything we could to adapt. The truth is, we didn't know any different. It was our new normal.

While Ryan and I starting taking on roles and responsibilities within the CF Foundation's OKC chapter, Hayden was taking on a strength that was noticeable to anyone who met her. At a year of age, she reached up and took the nebulizer out of my hand. She was going to hold that for herself, thank you very much. Shortly thereafter, she graduated from chest PT to "the vest". She began wearing it twice a day and, despite the intense shaking, she was fearless her first time wearing it. At age two she needed to have blood drawn for her annual test to check for CF-related diabetes. I was prepped and ready to comfort her. When I heard a gasp come from her mouth I instantly starting singing her a lullaby. A few seconds later I realized that she wasn't crying. In fact, she looked at me and told me "You don't need to sing, Momma". While a felt of moment of extreme pride for my daughter, that moments also broke my heart because a two-year-old shouldn't have to be that strong - but Hayden is different.

At age three she started swallowing her enzymes. She takes three with every meal and they aren't small. In fact, I'm sure there are some adults that couldn't take them. At her last doctor's appointment when it was time for her routine throat swab she shocked me by opening her mouth for Dr. Reyes instead of doing her usual lock-jaw. I knew the swab scared her and that she hated it. After Dr. Reyes was finished she looked at me and asked "Momma, aren't you proud of me? I was a big girl!" I was thinking to myself "Hayden, you have been a big girl since the day you were born."

She is just now starting to ask me why she has to do breathing treatments every day. I'm not ready to tell her she has CF. I tell her that it is to keep her lungs healthy and, so far, she seems satisfied with that answer. She has not allowed any part of her routine to hold her back. She is the fiestiest, most energetic girl I have ever known. She is a force to be reckoned with and she blows me away with her strength.

I wish I could go forever without her knowing she has a life-threatening disease. I wish that Ryan and I could just keep raising funds and awareness of this disease without her realizing what all of it is for. I don't want something to change in her mind that tells her she's different from everyone else.

But the truth is....she IS different. She is different in her joy, in her compassion, and, most of all, in her strength. There is nothing normal about my sweet Hayden Presley, and of that I could not be more proud.

Bringing you up to speed...

I will write a post on Hayden and her story tomorrow but first I wanted to show all of you a video I created for our walk team this past April. I think it will give you more insight into what cystic fibrosis is, and how the CF Foundation is saving lives. Just click on the link below. I hope it moves you...
P.S. make sure your speakers are on :)

http://www.onetruemedia.com/shared?p=82156ac1ed91992a7b7f88&skin_id=701

Allow me to introduce myself...

I'm Alyssa Siler, Mrs. Greater Edmond. That's me you see up there (just take away the bangs and picture the hair much longer. I promise new headshots are on the way!) I am competing in the Mrs. Oklahoma America pageant on April 17th in Guthrie, OK. My main reason for competing is my daughter, Hayden. She was diagnosed with cystic fibrosis at birth three and a half years ago and since then, I have been very driven to do what I can to help find her cure. I have been involved in many different committees and events within the foundation but this year I felt called to do something on a bigger scale - something that could reach a larger number of people. There is no denying that having a "title" of some kind can open doors for you that never would have opened otherwise. I can't deny the new opportunites to raise both funds and awareness for the disease that could come with winning Mrs. Oklahoma. That is what led me to this pageant (it certainly wasn't a strong desire to wear a swimsuit in front of hundreds of people!) and I am excited to be a part of it. I plan on having a lot of fun on this journey!

I thought I would take up some space to let you know a little about me. I grew up in Edmond, Oklahoma and am proud to still live there today. I have been married to my husband, Ryan, for almost seven years (we are a blind date success story!) and we have a beautiful little girl, Hayden, who is three and a half. I am primarily a stay-at-home mom but I also model part-time. I am the leading female vocalist in the band True North and we lead contemporary worship each Sunday at our church.

I grew up performing in music theatre and actually chose that as my major at the University of Central Oklahoma. Well, for the first three years anyway. The summer before my senior year, reality hit. I realized I was too much of a princess to move by myself to NYC and rough it as a waitress, running from audition to audition just trying for a chance on Broadway. Now, had someone offered me a lead role in a Broadway musical and a loft in the Upper East Side things might have been different...

Anyway, since (shockingly) that didn't happen, I switched my major to public relations. While I don't recommend switching your major in your senior year, I'm glad I did. Making the decision to stay close to home paid off because the next month I met Mr. Ryan Siler. Six months later we were engaged and, a year and a week from the day we met, we were married. He is my best friend and I am so blessed to have him in my life.

During my time at UCO, I competed in the Miss UCO pageant and I won! This was the first pageant I had ever done so it was kind of a shock to me. I went on to compete at Miss Oklahoma that summer. I did well for a first year girl. I won Rookie of the Year, the Newcomer Talent Award and I made the Top Ten. Everyone assumed I would want to go back the next year...but they were wrong.

At that time, I was a sophomore in college who was pretty much wrapped up in...well, herself. My life was all about performing and, at that time, I looked at the Miss UCO pageant as another opportunity on stage. More importantly, it was an opportunity to get a new pretty dress! Now I still love pretty dresses, don't get me wrong, but as I look back on that time I realize that it wasn't about much more than that. It was at Miss Oklahoma that I got a dose of reality. I had a platform issue that I had chosen because I had to have one. When I got there I was surrounded by girls that were passionate about their causes. In fact, it was their reason for being there. I was humbled. I didn't want to go back the next year because I would have felt like a fraud. That system was about way more than talent or wardrobe - something I didn't realize until I was there.

And now here I am - in another pageant. The difference this time is that my platform issue is my biggest reason for competing. I didn't want the title of Miss Oklahoma because I could not picture myself traveling the state to speak to children and adults about my cause. Now the thought of traveling and telling people about cystic fibrosis is what is driving me to win. I WANT TO WIN THIS TIME. Better than that, I want to win Mrs. America! Now, don't get me wrong, I still have a pretty dress to wear (omg, I love my dress!). I still love fashion and makeup (major understatement) as much as anybody - but it's not about me this time. It's about something much bigger. From the time she was born, I have felt that God blessed me with Hayden because He knew I would do something to fight for her. So here I go.....I'm ready to fight!