This is a summary of my life with Cystic Fibrosis, this past year, and my journey to motherhood. This is absolutely a story of faith, hope and love. But it is also a true story - and it wouldn’t be true without pain, fear, wavering faith, and frustration! This was written at 3 am with a heavy heart. What you will read is me being 100% open and honest, nothing but uncandid, raw emotion went into this piece.

I’m sharing my story with you in hopes to raise money and awareness to put an end to this horrible disease. I hope that you will share my story too. And if nothing else, I hope that by reading this, I’ve encouraged you to count your BLESSINGS not your problems. Prayers, support and love are always welcome. Negative opinions and sympathy are not.

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Twenty four years ago, I was born with Cystic Fibrosis. “Cystic Fibrosis (CF) is a chronic, progressive, and frequently fatal genetic (inherited) disease”. It primarily affects the respiratory and digestive system. For people without CF, the simple task of breathing is often taken for grafted. However, for those suffering with CF, breathing is the hardest thing we do each day. My life has been a constant roller coaster from day one. I was diagnosed the very day I was born, and have been fighting to breathe ever since. 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.

Here are a few facts about Cystic Fibrosis to help you better understand my story:

CF is a terminal illness - YES advances in medicine have come a long way since I was born and the life expectancy is continuously rising (thanks to donations allowing research to continue) BUT, the average life expectancy for someone with CF is still just a mere 37 years old. On one hand, I celebrate that number knowing I now have adulthood to look forward to…but on the other hand…thirty seven? Average? What kind of life is that?

I still hear of far too many suffering from CF passing away way before that. Mostly around my age. It’s a debilitating fact to live with and I am determined to help change that number. I am determined to BEAT that number.

Currently there is NO cure for Cystic Fibrosis, “the best that doctors can do is try ease the symptoms of CF, or slow down the progress of the disease so the patient’s quality of life is improved.” As I mentioned, I take over thirty pills a day, when I’m “healthy”, just to stay afloat. But still these medicines are not enough. My body requires stronger medicines to fight infections several times throughout the year, forcing me to spend weeks in the hospital.

I have been below average growth wise, aka tiny, my entire life because CF also affects the digestive system. Making poor growth, malabsorption and malnutrition, things I’m all too familiar with. You think “it must be nice to be so skinny…” Please, don’t ever say that to me. I put serious effort I to gaining and maintaining weight and I am devastated each time I lose any. Another prominent symptom of CF is a chronic cough. I cough all day. All night. 365. You lost me in a store? Don’t worry…you can track me by my cough. Hide and go seek? Yeah right.

There are many other symptoms and side effects of Cystic Fibrosis. I encourage you to do some research one day. You will learn that CF affects almost every major organ in our body, in some way or another.

Now to get to my story. Or should I say, our story…

Last January, I was admitted to Johns Hopkins for what I thought was a “regular” CF flare up. Little did I know, this hospital admission would quickly spiral into the fight of my life. With each passing day my symptoms worsened and my body was rapidly decaying. My AMAZING CF team and several other medical teams at Hopkins collaborated, but still could not find the source of infection or an effective medicine to treat whatever was quickly taking over my body.

Each day, my symptoms worsened. I was eventually moved to a critical care floor when 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 on 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 this 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, Tyler and my cousin Abby beside me - I knew. I could feel it.

I knew that this was the beginning of something very bad. Something very hard that I was hardly prepared to deal with.



I barely had the energy to even whisper at this point, so I saved it for when the doctors came in. I cut right to the point “Am I dying?”. Just saying those words out loud will haunt me for all of my days. I’ll never forget his vague attempt at a reassuring response, “We’re watching you very closely. You see those monitors?” (Yes, I see all 8000 of them) he continued “…I have them up on my desk in the ICU to keep an eye on you and if anything changes, we’ll move you right away. I know the ICU scares you, but if you have to go, I promise you it’s the best place to be. But let’s not talk about that until we have to”. He gestured for my dad to follow him and they talked in the hallway. I felt like a little kid but honestly, I didn’t want to hear anymore of what they had to say, and they knew that.

My mom couldn’t do anything but sob at this point, and I wouldn’t let Abby or Tyler leave my sight. My dad was my everything at this point - my voice, my backbone, my strength - because I had lost it all. When he came back inside, I saw true fear in his eyes. I told him, all of them, that I was going to the ICU. I said it gently, but sternly so that they could prepare themselves for what was coming. They all tried to soothe me and told me I was getting better, stay strong, etc. But I knew. I could feel it coming. The fight of my life was just hours away.

I remember sending my dad and Tyler home to get sleep. It was so late and sitting and staring at me wasn’t helping anybody. I hugged them extra tight, as tight as my lifeless body would allow. I held back tears and watched them leave. Abby to my left, in a frozen daze. My mom to my right, pacing aimlessly, in this small, small room…I drifted off to sleep, no energy to stay awake.

A few hours later I woke up in a panicked state, unable to breathe, gasping for air. Before my mom and Abby could even jump up to get help - there were nurses and doctors flooding my room. He really was watching me from the ICU because there he was, standing over me telling me to “stay with him”. “We’re going to move you to the ICU now Ashley, everything’s going to be ok”. It comes in waves, flashes of horrible memories. Next thing I know, there was a team of critical transfer people in purple. (I refer to them as the purple people, for obvious reasons.) I could only open my eyes for seconds at a time - mom - Abby - flowers everywhere that people had sent me - purple people - nurses - tubes, tubes and more tubes. I could feel them lifting me from one bed to another. I managed to get out a final desperate yell/whisper to my mom. Two words. “Dad…Tyler.” It took literally everything in me to say those words. She shook her head at me, “yes Ashley”.

She knew that I needed them there to be strong for me when no one else could. And then I was off. Fastest transportation method ever - the purple people. From one end of the hospital to the other in what felt like seconds. I faded away after that. And what I woke up to, still brings me to tears just thinking about it.

After three weeks of being in the hospital, getting worse daily, my lungs had gone into full respiratory failure. My biggest fear, had just become a reality. I was now in the medical intensive care unit (ICU) and put on life support.

At the foot of my bed, my mom and best friends had taped pictures of me with each of them, and pictures of me and Tyler. These pictures are what kept me going. That…and my biggest motivator of all. My unborn baby. Pre ICU, I had only recently found out I was expecting. I hardly had time to celebrate when my life took an unexpected turn. I kept the baby a secret as best I could so my family didn’t have to worry even more. I wanted this news to be a happy thing, not a scary thing. However that little fantasy quickly vanished as I became sicker and sicker. My family and friends intermittently found out as they spent so much time with me in the hospital, and the care plan I chose made it obvious that I was protecting someone other then myself.

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. 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” “you or the baby” “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.

My memory of the first week or so in the ICU is a mess. A gigantic pain medicine, induced coma, WTF is happening to me…blur. I remember bits and pieces. Seconds and minutes here and there. Pain. Fear. Frustration. Sadness. Repeat.

I remember that no matter the time of night or day, someone I loved very much was in a chair next to me. They would come and sit, not expecting anything in return, just making everything a little better simply by being there. I can still feel Cheri’s warm hands, and Tyler’s callused hands, squeezing mine tight. I can still feel my dads prickly, whisker kisses on my cheek, coming and going. Massages from Emily, arm scratches from Chrystie, my stepmom washing my matted hair. I can still feel the most painful tears hitting my arms. Not my tears. Everyone else’s as they stood over me.

Sitting, sleeping, crying, smiling at me, studying, reading…something, anything, but always there. Except a few times I would come to from my daze and panic because I thought I was alone. Only to hear my antsy mom pacing up and down the hall right outside. It’s like she knew because every time I woke up, even for just seconds, she would pop her head in with tear filled eyes, and her fake, perky, intended to be reassuring voice “Mommy’s here Ash, go back to sleep!”. I would wake up and almost instantly, whomever was with me, would immediately tell me to go back to sleep. I swear I never felt so unloved and confused in my life. I remember thinking several times, “real nice guys.” Little did I know, that sleeping was saving my life.

Eventually I was put in an induced coma because I was fighting the ventilator so hard. I wouldn’t allow it to breathe for me. It terrified me and I put all my energy into fighting the only thing keeping me alive.

For what seemed like an eternity, I succumbed to this lifeless state. I allowed myself to wake up a few minutes every few hours just to ask for

more pain medicine. And by ask for, I mean flail my arms in a gesture that I could only hope they understood. And most of the time they did. Pain medicine, and back to sleep, because I didn’t want to be awake. I didn’t want to think, or feel. I don’t even know if I wanted to be alive at that point.

For twelve days my life rested in the hands of a machine. I can still hear it breathing for me. I can still smell the tubes and the blood. I can still hear the sound of the suction machine they used to get out extra blood and mucus or spit from my throat throughout the day. I can still taste the sour tape on the corners of my mouth holding the ventilator in place. I can still feel the pain that pressed on, even through the strongest pain medicines.

I was confined to a bed - a prisoner in my own body, at the mercy of a merciless disease. I couldn’t talk, walk, eat, drink, bathe…nothing. All my liberties and independence had been stripped from me. I had succumbed to infantile ways, relying on others to do absolutely everything for me as I just lie there. You never truly appreciate anything until it’s taken from you and it’s downright sad that we ALL live that way. I experienced it myself. I’ll never take any of the above for granted again.

It’s mortifying while your dignity is still in tact, to have people take care of you. To be fully reliant on someone to dress you and change you and bathe you. It’s beyond frustrating to have someone speak for you when you can’t speak for yourself. But it’s liberating when it’s all over. I can still feel the way the floor felt under my feet when I took my first step. I can still taste the first bite of food I was allowed to have after 20+ days of not eating or drinking anything. Baby applesauce and ice chips brought me to tears. I hope you never have to understand that feeling.

At this point, I had all but given up hope. I had lost my faith and I had just about accepted defeat. Doctors (medicine team) strongly advised I not “get attached” to “the fetus” as they often referred to my unborn baby. The treatments sustaining my life were potent, they were strong, and they were dangerous. “If this fetus were to survive the ordeal, it would surely have lasting defects and troubles after birth.” And so on. I heard it every day. So why not give up? Why not just say, “Ok, fine, abort my four month old baby that I’ve waited my entire life for”…

Because that’s not who I am. As a Christian, I don’t believe it’s my right to take a life. This baby was given to me for a reason and right now, I’m it’s only hope. I’m the only one fighting for it. I’m the only one that wholeheartedly believes that this is the right choice. Right now that reason feels pretty f****d up…but there’s a reason nonetheless.

My entire immediate family came that day, best friends too. It felt like everyone was coming to say their goodbyes. Although no one said it, I could see it in everyone’s face. The sadness, the fear. No one ever said it. But the whole room felt it. And so did I.

Night 11. The ventilator was no longer an option in sustaining life at this point. They stopped pain medicine so that I would be lucid for this serious conversation. I sat with my mom, dad, Tyler and this team of doctors as they explained this to me…I felt defeat rush over me. So many questions. So much fear. Endless anxiety. I thought to myself, this is hell. I’m actually living in hell.

Tomorrow morning I would be scheduled to have a tracheotomy placed that the ventilator could attach to. IF everything went well, IF my body accepted the new form of mechanical breathing…I COULD eventually learn how to breathe with this device on my own.

So many ifs. So many unsure faces staring at me. So many unanswerable questions bouncing around screaming to be answered. I don’t want it. I don’t want another surgery that my body potentially can’t handle. I don’t want to be here another second. I don’t want to feel this way anymore. I’m done. I’m done being sad. I’m done being scared. I’m done fighting this pointless f*****g fight! I HATE THIS!!!

As quickly as they left, they were back. Alarms sounding around me. Monitors alerting that I was in distress. They were begging me to calm down. Tears streaming down my face. Frustrated and so angry my body was shaking. I looked past everyone and stared at my parents and Ty. They all told me “Everything’s going to be ok, just go to sleep Ashley. I love you and I’ll be here when you wake up.”

I don’t think I went to sleep. Maybe my body did but certainly not my mind. It raced. The fastest race it’s ever ran. I’m dying. This is it, I’m really truly dying and I can’t even tell my family I love them back. I just have to lay here and accept this? What is this shit? I fought so hard. I did everything right. Why is this happening? I can’t believe I’m dying. I’ll never get to be a mom. I never get to meet this baby I’ve fought like hell for. I’ll never get out of this bed will I? I’m going to die and I can’t even tell them that I love him back. I hate this.

So much anger. So much pain. So many tears. Where is this God I’ve followed my whole life? Where are these angels that I thought watched over me? I’m in a hospital with the best of the best and even they can’t fix me?? This is such bullshit. I’ve fought this hard for nothing.

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.

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.

A miracle is defined as “an event that is not explicable by natural or scientific laws, and is therefore believed to be an act of a divine agency”. What happened that morning is nothing short of a miracle.

I can’t explain the way I felt when I finally fell asleep that night. When I tried to explain it to Ty, all I could come up with was that I felt light. I felt comforted. I felt ok. I wasn’t scared and I wasn’t in pain. In my dream, it felt like I had left this dark world I had been living in the past month and a half. It felt like I was finally free.

To my surprise, and utter disbelief, I woke up that morning. My mom had traded places with my dad and Tyler, and she was rocking in the corner, ever present tears resting in her eyes. I didn’t even motion for her to come over to me because I wasn’t sure that this was real yet. The respiratory therapist came in and said that I was so calm for the first time in weeks, that they turned the ventilator off to see if I could breathe on my own. And I was. I had been for almost an hour without even knowing!

Is this real life? I’m still not convinced. Next thing I know, the physical therapist, (and my rock during all of this) - Julie, comes in and tells me I have to take a walk.

I’m thinking, “Julie what are you smoking?”. I can’t even sit up, and you want me to walk? Ok girl. I’m officially convinced that I’m still dreaming. But nope. There went my covers. Here comes a walker. I look at my mom hoping she understands my plea for help. She doesn’t. She’s all chipper and perky for the first time in weeks…“come on Ash, let’s go”. This is a joke right? My muscles have atrophied at this point. I’ve lost 20 pounds. An hour ago I was relying on a machine to stay alive…and you want me to walk? Walk where?

Ok so were really doing this…um. Here I go. Walking at the pace of a turtle, leaning on a walker in front of me, a physical therapist to my left and behind me. My mom cheering me on in front of me, video camera in my face…this is really happening.

I came back to the room, got put back in bed and immediately grabbed my pad of paper. “WHEN CAN I TAKE THIS OUT?”. Eager as hell already. Confident like I hadn’t been in weeks. Excited. Hopeful. What seemed like an eternity finally came, they removed the ventilator after I passed a series of tests. They asked me to talk. I let out a barely audible whisper. “Hi mom!”. I thought she was going to collapse. She cried so hard. I saved the next whisper for my dad. He was instantly silent on the other end of the phone and I knew that he felt the biggest sigh of relief in his life. I could tell that his heart was finally able to rest after he had stayed with me through pure hell the past 11 nights.

I didn’t say anything else the rest of the day, I just waited anxiously for Tyler. I didn’t let my mom tell anyone I was taken off the vent until I got to see him.

He slept in a chair for a month. He watched me shrivel up to nothing and never ran, when I wouldn’t have blamed him if he did, but he stood tall by my side instead. He pushed me when everyone else was treating me like a fragile doll. He made me fight. He made me believe. He made me survive.

When he walked in the door, he immediately greeted me, not noticing the ventilator was gone. Then went over to my mom for an update like he had every afternoon. She just simply pointed back at me…and then he realized. He dropped to his knees instantly and cried with me.

That afternoon, as we sat together in silence, two technicians came in to check on the baby as they had every day before that. Only this time, they brought a sonograph machine so that we could actually SEE the little one. Immediate sigh of relief at the sound of the strong beating little heart. And there it was. This “fetus” that I supposedly should’ve given up a long time ago. A true, living, miracle - and a fighter to the core.

One of the ladies asked us if we wanted to find out what we were having. Up until this point we didn’t want to know. Because I really didn’t want to get too attached. I was so scared of falling in love with the idea of being a mom that it would crush me to have it taken away. But we both instantly said yes. There was no longer a question. This BABY, was ours. A fighter that deserved to be loved and recognized.

This baby…was going to be a little girl. My miracle. My angel.

Once I had passed several tests, and several tubes and such were removed because I was no longer considered “critical”…I was able to return to my home floor.

With my mom by my side, I was wheeled in my bed, stuffed to the brim with my stuff, back to Nelson 4. My home away from home. When we got off the elevator we were greeted with a hallway full of staff. Nurses, doctors, everyone that worked on the floor greeted me, everyone clapping and cheering. Some of them with tears streaming down their face. This was the first time I realized that outside my little ICU room, there was a world of people, strangers even, routing for me and praying for me. Following my story closely. Anticipating good news. I was flooded with so much love from so many people. Over 1000 cards made their way to my hospital room that month.

1000 cards and letters, handmade drawings, prayer cards, poems and packages. This many people believed in me? This many people fought for me? There were cards from around the WORLD! I was in shock.

A week later I was weaned off of room oxygen completely. I could walk from my bed to the bathroom on my own. My vitals were finally stable. Things were finally, actually looking good!

It was now valentines day in the hospital and on this day, my belly popped! As in until now, it was as flat as a board. I had lost 20 pounds and was very frail and thin. No external sign of pregnancy at all. The obstetrician came to check on her and she said “She was hiding! Smart little one. Sometimes babies can sense when they’re in danger, and they hide in the womb until it’s safe!” We wouldn’t know how true this was until she was born. But oh how I hoped and prayed she truly was “safe” in there.

I was eventually released to come home. Oxygen free. Still in a wheelchair but making progress everyday. Don’t get me wrong, it was a battle. A daily struggle just to keep going. Some days I didn’t want to do anything. I feared being alone. I was now an insulin dependent diabetic, because I clearly didn’t have enough to worry about. I still needed help bathing, dressing, walking…pretty much everything. My mom and Tyler were my lifeline.

I was in full time pulmonary and physical rehabilitation until May - when my nephew was born and I felt a burst of happiness and energy I had been longing for, for so long. I was finally confident in my ability to walk on my own, and eventually conquered my newfound fear of stairs, and being alone.

Everything was looking up. Tyler and I prepared Preslee’s room, we shopped and organized and prepared as best we could. We had long heart to hearts and conversations that nobody wants to have. We talked about what should happen, if it comes down to my life or the babies. We talked about what should happen if one were to survive and not the other. We even talked about the very real possibility of neither of us surviving.

We announced our pregnancy when I was about six months along. For obvious reasons we kept it hidden as long as we could. I received more mixed feelings and outspoken comments then I ever could’ve imagined.

“Will she have CF?” . “Will she have birth defects from the medicine?” . “Will you be able to handle labor?” . “Are you healthy enough to have a baby?”…and so on. As discouraging as it was to read/hear those things, (and worse) …the amount of love and support we got made it all worth it!

So many people were in shock and disbelief that the whole time I was fighting in the ICU, I was pregnant. Fighting that battle for two lives. Some said selfish, while others said selfless. To be honest, I don’t really care what anyone thinks. My little girl deserved a fighting chance and if I had to do it all over again, I would.

It was late June, I was growing increasingly tired - and expectantly large. I went to the hospital for about a week, got a central line placed, and started a course of home IV antibiotics to fight off a new infection. I was nearing the end of my pregnancy, every day that I grew bigger - so did my anxieties. I tried to mentally prepare myself for every possible outcome. The worst of the worst. I kept this pain to myself as to not worry Tyler or anyone else. But it was always there. Always demanding to be recognized.

It was a Tuesday afternoon that I went to the ER because my legs swelled up and my blood pressure spiked. I stopped at santonis for one last sandwich, because even though it was six weeks before our due date, I knew it was time. When I walked in the ER you could hear fluid swishing in my legs. A few theories were tossed around. Fear peaked when I heard “Preeclampsia”. They decided to induce labor, hallelujah to that because I was ready to burst.

After almost thirty hours of laboring…by Gods grace and many, many miracles…our sweet little angel made her way into the world. She was as healthy, and as beautiful as can be. Big girl too!! My six pounds, ten ounce preemie was here safe and sound after the longest, hardest, scariest months of my life.

The power of prayer, love, strength, perseverance and grace that flooded my life this past year has left me in an overwhelmed state of gratitude and bliss! Miracles really do happen, I have twenty four years behind me, and a perfect nine month old sleeping on my lap to prove it to you.

My little miracle wakes up every morning with a smile on her face, instantly melting my heart. She has no idea the hell I went through to bring her here, or the hell she went through to get here…but I will surely spend the rest of my days loving her with all I have.

As grateful and as BLESSED as I am, the fact remains that I am still at the hands of a merciless disease. I remain scared, tired and angry. I continue to fight through the fear, but it absolutely breaks my heart to think I won’t be here to see Preslee grow up. I try not to think that way, but the reality of this disease is that, miracles or not, it is still a progressive, terminal illness. It is still an uncured, lingering monster. And so I ask you, please join us in our fight.

Thank you to everyone that prayed for us, believed in us, and fought for us. Thank you to my incredible CF team at Johns Hopkins who worked non stop to keep me alive. They never doubted me, they never questioned my fight for Preslee. And they also went above and beyond in more ways then I could ever repay them for. Dr Michael Boyle, Dr Natalie West, Dr Noah Lecthzin, Dr Christian Merlo, (aka the CF team), and Dr Rebecca Dezubi will forever be my real life HEROES. Thank you to one wonderful MICU nurse in particular that has truly become family, Mallory. A loving doctor that has turned into a lifelong friend, Dr Kochar. And two physical therapists that truly got me where I am today! Most importantly, thank you to my parents, my siblings, my best friends, and Tyler. I can never, ever repay you for your immeasurable love, strength and patience. Just know that I will spend the rest of my days admiring each of you and loving you with all I have.

I want to thank you for taking the time to read our story, and I hope you will consider joining us in our fight to make CF stand for CURE FOUND, not Cystic Fibrosis. I hope that one day I can truly breathe, like you.

BLESSINGS > problems

Xoxo Ashley