Everyone has a story. On Sunday, it’s yours. A way for others to be inspired by your heroism and help put all of our lives in perspective.
The Sunday Series (27): The Breath of Life
Life isn’t fair. But you hope you get the chance in life to wage a fair fight. Have a goal, make a plan, take a deep breath and take action. But what if breath won’t come easy, what if oxygen is hard to come by, what do you when good air is rare? You try your best to breathe… or maybe hold that breath and wait for a miracle. Sometimes miracles happen.
For Ashley Silcott, this is life. Breathing life into the future, to future plans, for the chance to make it day-to-day always seems to hang in the balance. Ashley has Cystic Fibrosis, (CF). It is a chronic, progressive and frequently fatal (genetic) inherited disease, primarily affecting the respiratory and digestive system. For much of Ashley’s time on this planet the hospital has become a second home. She’s been admitted more than 50 times, to get breathing treatments, medication, IV’s, and more.
Ashley was diagnosed with CF at birth. She says, “one day I feel great, the next I can barely function. I take over thirty pills a day and spend hours doing breathing treatments and physical therapy regimens just to try and stay healthy.” And then there’s the constant cough. The one Ashley says she’s had her whole life, the one for which kids made fun of her in school, the one for which other people think she’s contagious. The one that won’t ever go away.
The average life expectancy of someone living with Cystic Fibrosis…37. A little more than a decade from where 25-year-old Ashley is now in her life. But Ashley’s not average, she is determined to help change that number, to beat that “average”. One way to do it is to fight, the other, most unexpectedly for Ashley, is to become immortal. But immortality comes with a price. Ashley nearly paid with her life.
In January of 2013 Ashley was back at Johns Hopkins Hospital where she had been so many times for breathing treatments, to help fight off infection, to help her simply keep going. She had never stayed for more than 10 days, but this time the journey would be much, much longer. This time life would hang in the balance and that balancing act would affect more than just one life.
During this hospital stay Ashley wasn’t responding to treatment. Things were going downhill… and fast. “Each day, my symptoms worsened”, Ashley says. “I was eventually moved to a critical care floor where my resting heart rate resembled that of someone who had been working out vigorously for hours. I had high fevers, 103, 104…for hours each day. My body was in overdrive just trying to keep me alive. My kidneys began to fail. I was coughing up blood and throwing up hourly. I eventually lost control of my bladder and I could no longer walk because I was so weak. My body would collapse merely trying to stand. I was in such terrible, constant pain and agony that all I could think was, “this is it, this is the end. This is how twenty four years of fighting is going to end…” I was utterly terrified. I’ll remember the entire, horrible, terrifying experience for the rest of my life. Laying in the critical care bed, with my mom and dad, my husband Tyler and my cousin Abby beside me – I knew. I could feel it.”
And what Ashley could feel was more than a health crisis, it was despair. Because what she and Tyler had kept from the rest of the family was a secret, one they had, pre-hospital stay, gone to great lengths to research, to speak to the experts and talk about to each other, so they could tell their family the news with joy in their eyes and not fear in their hearts. Ashley was pregnant. It wasn’t planned, but it was reality and once it happened Ashley and Tyler were determined to bring this miracle of life to life.
But as she got sicker and sicker and a decision was made to move her to the Intensive Care Unit (ICU). The treatment plan Ashley had been approving, or disapproving, for fear it would affect her fetus, gave it all away. Finally her Dad overheard her conversation with the doctors, and Ashley broke down in tears as she admitted to her father she was with child. “My Dad took a long walk at that point”, Ashley says, “then came back and was more supportive than she could have imagined. My Mom was terrified, but supportive.” Yet now that it was out in the open, the life-changing decisions were getting tougher.
“If you have ever been pregnant, or loved someone that was carrying a baby, you can imagine the state of desperation and distress that I was in”, says Ashley. “I wanted this my entire life, the gift of being a mom. And now it was dangled in front of me. “You or the baby”. I chose both. There’s no question. For me there was no OR. It was then that I found out who my true loved ones were. Those that loved me accepted my decision to fight for BOTH of us, not just one. Others considered me selfish and foolish. Either way, I had made up my mind.”
But what you decide and what life decides to place in your path are often not on the same page. Things had gotten bad. Ashley was refusing treatments which could help her, but hurt the baby. And now she was no longer breathing on her own, on a ventilator, sedated and basically in a medically-induced coma, it was Ashley’s Dad, to whom she had given medical power of attorney, who made the decision for treatments to save her life. But the ventilator was no longer helping Ashley to breathe and the doctors and the family agreed a tracheostomy (trache) would be necessary. They woke Ashley to tell her what would happen next.
Ashley still remembers what it felt like after she learned the news, knowing the procedure would happen the next day, if not sooner: “I knew this day would come. Everything I’ve ever read, heard or witnessed about Cystic Fibrosis proved that. CF is a vicious monster that doesn’t stop. It’s unpredictable. Perfectly healthy 50-year-olds are living with CF over here. And a three-year-old is dying because of it over there. Unpredictable. CF does not discriminate. And it is downright cruel. And that’s how I went to sleep. Convinced that I would die right there that very night in my sleep. Heartbroken. Silent. Defeated.
Ashley continues, “I drifted off to the most panicked, restless sleep of my life. My hand on my precious stomach, praying to whoever was listening. Pleading and begging for another chance. Because apparently that’s what you do when you’re dying, you cling to life like never before. And I was literally, clinging to life. I held my stomach, somehow hoping that this little person inside me could feel that I loved them. I just hoped that he or she knew that I tried. And off to sleep we went. Surely to meet angels tonight. Or so I thought.”
But that night prayers were answered… sometimes miracles happen.
“I woke up and couldn’t believe I was alive”, says Ashley. “My mom and the respiratory therapist came in and told me I had been breathing on my own for an hour. They took the ventilator out and I started talking, slowly at first. Progress, progress throughout the day. I had not stood up in a month. I had lost more than 20 pounds. I was just so small. No muscle mass, no fat. In an insanely short amount of time, about two weeks, I was out of the hospital.”
By Valentine’s Day, the baby, “popped”, meaning Ashley now had the pregnancy belly. She says she gained about 10 pounds nearly overnight.
Pregnancy was tough, because Ashley was still doing rehab and needed help with walking and was incredibly anxious about the health of the baby, calling the doctor at least twice a day every time she thought the baby had stopped moving.
But on June 26th, life moved forward in a way which has changed Ashley’s life. Despite coming six weeks early, Preslee, at 6-pounds, 10-ounces, was born. Healthy, with no signs the little girl had endured any stress, Preslee was perfect.
This was the breath of life Ashley and Tyler had been waiting for. “She (Preslee), has made me fight one-thousand times harder than I ever thought I could”, says Ashley. I’m coming up on one-year-hospital-free. That has never happened. She just keeps me going. I don’t have time to rest, or to get sick. She’s the reason I take my medicine, the reason I get up every day. I no longer think about being sick. It no longer has power over me. The love I have for her is stronger than any medicine out there.”
For Ashley the fight isn’t over, it never will be until she says the letters, CF, which stand for Cystic Fibrosis, can stand for Cure Found. You can help. Learn more or donate at, http://fightcf.cff.org/goto/ashleysarmy
I asked Ashley what one thing she thinks she can share to inspire others from her experience. She said it’s one word… hope. “I think I never let go of hope, because hope prevails. It can be tough, but it’s worth holding onto. If you’re not positive, if you let yourself go to a dark place, it won’t work. I think it’s staying positive. I thought positive throughout the entire experience and it brought me to where I am today. It has made me a stronger and more motivated person. Whatever you are going through in life, I think you have to have hope you can get to a better place.”
It’s hope and maybe just a little inspiration, a breath of fresh air, the breath of life, from a little girl named Preslee.
Until next time thanks for taking the time,
(To read Ashley’s own personal version of her journey, go to www.ashleysilcott.tumblr.com)
Mark Brodinsky, Author, Blogger, Financial Services
The #1 Amazon Best-Seller, It Takes 2. Surviving Breast Cancer: A Spouse’s Story
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