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Be Brave with Shelby Taylor

Do you remember when you met Jesus for the very first time? I don’t. I wish I could remember, but it is as if He has been here all along. There was never a big moment when I met Him. I never had an alter call type of experience. He has just been my very Best Friend for my whole life. I guess you could say it’s been like when little kids have imaginary friends. Only mine wasn’t imaginary, He just wasn’t visible. Everywhere I went, so did He. He has walked beside me, held my hand, and sat with me. On the beautiful days, and the hard. When I thought I couldn’t do it any longer, and when I begged Him for more time. He was always there. He is still, and will always be, my forever Best Friend.

 

I was born on July 18, 1991 via emergency c-section, and diagnosed with a condition called Hydrops. I was given less than a 10% chance of survival that hot summer day, and my parents named me Shelby Elyse on July 19

simply so I wouldn’t die without a name. The doctors told my parents that I probably had Down syndrome. They told them that I was going to be blind, deaf, and have no quality of life. If I did make it, they said I would be on oxygen indefinitely and a feeding tube forever. They predicted I would be on the ventilator until Christmas, and in the hospital long after. They said all this, but they were very wrong. What the doctors presented was the worst-case scenario, and that I was the sickest baby in the NICU at Akron Children’s Hospital. BUT JESUS! He stepped in and simply said, “This is not how her story ends.” He worked miracle after miracle for the next few months as everyone watched in awe. I imagine He sat beside the incubator, giving wisdom to the doctors and strength to my parents. I imagine He was cheering me on “keep fighting Shelby!” I came home from the hospital on September 18, 1991. Exactly two months from my traumatic and dramatic entrance into the world.

 

[He performs wonders that cannot be fathomed, miracles that cannot be counted.] – Job 5:9

 

The doctors told my parents to treat me the same as the other kids. I don’t think they did this, but I am not mad about it. My childhood was magical. My dad and mom created a world for me where I could be myself 100% of the time. We danced in the house to James Taylor, and Michael W. Smith, and went to the most nostalgic place in the world for vacation every year. The phrase “a tradition unlike any other” was used for just about every fun thing we did. My dad told me that Van Morrison wrote “Brown Eyed Girl” for me, and I believed him for far too long. My sister and brother were my heroes, and let me tag along on every outing. My family spoke truth into my life that I was unique, and special. They knew that the Lord would do incredible things through me, and my story that was still being written. After all, I didn’t even belong to them. I was His, and He, in his great kindness was just giving me back for a little while.

 

I was clinically diagnosed in the summer of 2001 with a genetic disorder called Noonan Syndrome, at my yearly cardiologist appointment. This came as a total shock to us, and while seemingly devastating, it was also comforting, to finally have everything make sense. I was small for my age, and had issues with my heart, lungs, eyes, blood, immune system, and more. Soon we were thrown into a world of geneticists, endocrinologists, neurologists and genetic counselors. Physical and occupational therapy, growth hormone shots every night and more doctors appointments became my weekly routine.

 

Despite all of this, my family refused the idea that I wouldn’t succeed. In fact, the words “I can’t” were banned from my vocabulary.  When doctors and statistics said, “she will never” my precious parents said “oh yes, she will.” They dedicated themselves to making sure I would live an abundant life, despite the circumstances. Tutors, therapy, and extra hours learning dance routines were not foreign to me. My dad would play baseball in the backyard with me to work on my hand eye coordination. Our home movies are filled with clips of my mom asking me to sing for her, run and jump for her, and so much more. They worked hard alongside me to ensure that my future would be bright. They decided that despite my differences, I would flourish.

 

[“Because she loves me,” says the Lord, “I will rescue her; I will protect her, for she acknowledges my name.] – Psalm 91:14

 

The same year that I got my Noonan Syndrome diagnosis, I found something that made my soul come alive. It was the stage. I lived for musicals, plays, and any opportunity to get a microphone in my hand, and a spotlight on my face. As much as I could hope for it, I would never be the star on the soccer field like my big brother, or have the cheetah like pace of my big sister. But, my life could be full even if it looked a little different than everyone else’s. The girl who they said would need oxygen forever, found her spot on a stage shouting lines and belting songs. Only Jesus, friends, Only Jesus. To this day, I am so thankful I found the stage. It brought so much beauty into my life for most of my childhood and teenage years. For weeks I got to be someone else. It didn’t matter if I was playing an orphan, a dog, a member of FDR’s cabinet, or Gladys Herdman in “The Best Christmas Pageant Ever.” I got to escape my reality, if only for a little bit.

In January 2005 I began to experience headaches every once in a while. The last week of February brought a really bad one for five days straight. My mom scheduled a quick trip to my precious pediatrician, because she had a weird feeling. He suspected it was probably something minor, but decided I should get a CT scan the following day, “because you never know with Shelby.”

March 3, 2005 would prove to be a life-altering day. My scheduled CT scan was followed by a whirlwind. We were escorted into a small room, and the phone rang beside us. On the other end, my pediatrician told us that all they could see on the CT was cerebral spinal fluid. My beautiful mama became covered in hives from head to toe. What was supposed to be a precaution had quickly become an emergency. My child life specialist Betsy showed up, and all of a sudden I was getting an IV and in an MRI. When it was over, a room full of strangers, all with sad eyes, met us. A ride on the orange elevator followed, and when we landed on the 5th floor of the hospital, in big bold letters was one big word. NEUROSURGERY.

 

Within minutes a small Filipino man with tears in his deep brown eyes, was telling us I had a brain tumor. SO SLOWLY because, Neurosurgeons do everything slow. I watched my mom and dad crumple into each other and I sat in shock. The hard questions needed to be asked, and I knew that I had to be the one to ask them. Jesus made me brave in that moment. “Will I die? Am I going to be the same? Am I going to remember everyone?” He promised he would do all he could, and that he was hoping for the best. He told us he would need his “A-Team” for my operation, and that it would be tricky. As we exited the hospital that evening, my surgeon took my moms hand and gently said that if we had waited a week I would have had a gran-mall seizure, probably in my sleep, and he didn’t think I would have survived it.

 

That evening we made lots of phone calls, but asked that no one come. I was so tired. But then came a knock at the door, and there stood my pastor and his wife. Two of my favorite people ever. I remember all of us being so relieved to see them. It was like a breath of fresh air entered into a suffocated space. Their prayers brought stillness and peace into the chaos. It was as if my best friend Jesus walked right through the front door after them that night. They sat, prayed, and talked with us. And I fell asleep that night to the sounds of ringing phones and broken hearts.

 

[The Lord God is my strength, and my bravery. He will walk with me through places of trouble and suffering.] – Habakkuk 3:19

 

The few days leading up to my surgery were filled with scans, test, and meetings. My mom took me to school during lunch because I was longing for normalcy. But soon, came the morning of March 9.  I kissed my big sister goodbye, and my parents and grandma Barb took me to the hospital.  I had a 21.5 hour brain surgery that day. No, that is not a typo. 21.5 hours. The nurses compared the pace to watching grass grow. My brain had more blood vessels than my surgeon had ever seen before. What a hero he was. I am told he drank a couple Gatorades, ate a sandwich or two, and took 2 breaks for 20 minutes each. It makes me cry to even write that. How brave he was! My parents sat in the waiting room all day and all night long. Over 60 people showed up to pray that day and night with my family. We asked the nations to pray, and they did. My mom started sending the people out to pray with the other families in the waiting room, because the attendance was overwhelming. I am told I missed one huge party that day, and I am still sad about it. I love a good party. Two of my dad’s best friends refused to leave until I was out of surgery. Theo and Jason stayed up all night with dad, mom, and my sister Jordyn. My big brother, Seth couldn’t be at my surgery because he was sick. It makes me cry my eyes out if I think about it too much. What a great love these people had and still have for my family and I. I like to imagine that Jesus was in that operating room, and in the waiting room that day. I imagine He held my hand while I lay on the table, and sang His truths over me. I imagine He stood beside my surgeon, whispering reminders about what came next. I imagine He sustained him, and did not let him become weary during those long hours. I imagine He held my mama close, and reminded my dad of His power. He was there. He always was. He always is.

 

[One thing God has spoken, two things I have heard.: that you oh God are strong and that You oh Lord are loving!] – Psalm 62:11

 

My surgery was successful. He got most of my tumor, and my recovery was normal. My only major side effect is migraines. I had scans for years following, and in the fall of 2017 my NeuroOncologist said that I never need a scan again. She told us that it would be remarkable for such a stable tumor to ever grow. So we continue to pray, and believe that it will remain stable. And if anything ever does happen, I know with all my heart that Jesus will be sitting right beside me, just as He always has.

 

[ Daughter, your faith has healed you. Go in peace. ] – Luke 8:48

 

My teenage years were nothing short of a blast. I had a tribe of friends they write movies about, and I was the definition of a social butterfly. My dad was the president of my small Christian school, and I loved everything about it. When I was 19 I started college, which seemed to be a miracle in itself. Learning disabilities had plagued my ability to be a regular kid in school, but I was determined to succeed. I won’t lie to you, college was tough and brought a season in which I really struggled. It was full of fear, anxiety, and tears. The hardest part about that season was that I KNEW Jesus was beside me, but wanting Him to leave. I struggle to even admit that, but I just wanted to be left alone. That season was treacherous, and the kind of hard I wouldn’t wish on anyone. He never left though, even on the darkest days. Looking back, I imagine Jesus sitting on the end of my bed on the hardest days, praying over me as I slept. Never to abandon, always being my Best Friend.

 

[ but the Lord stood with me and strengthened me. ] – 2 Timothy 4:17

 

On September 16, 2016 I boarded a plane with three suitcases and moved to Anchorage, Alaska. Something we never dreamed was a possibility. Living a life of fear was never an option; a life of bravery is what we have always chosen. I prayed for a year before I moved, and asked God to make it crystal clear where He wanted me to go. There I was, the girl they said would never live a normal life, hopping on a plane to a place where I knew no one, to start a big adventure. I have lived here for 2.5 years and have blossomed more than I ever thought possible. I found myself, and figured out what the Lord wants me to do with the rest of this beautiful life He has given me. He gave me a “family” here, that loves me as if I am one of their own. I found a church where I feel at home, and the fingerprints of God are everywhere I look. Leaving home was the hardest thing I have ever done. I am nothing but grateful for this wild adventure, without Jesus I am sure I could have never done it.

 

[ God has been so good to me. ] – Psalm 116:7

 

I used to wonder what my childhood, and the rest of my life would have looked like had I never been sick. What if I had been born perfectly healthy? Who would I be now? I don’t let myself go down that rabbit trail often, because there is no way to know, but I do believe that my life would have been less rich. Throughout all my suffering, every single piece of it, I have felt abundantly loved, extremely special, and completely cared for. As messed up as this may sound, I think that my sickness, my trials, and even something as devastating as a brain tumor, has made me feel SO loved by God. And if I’m being honest, if I had lived a healthy life, I don’t think I would love Jesus as much as I do. It has been a beautiful life, having Jesus by my side. What a grand gift it is, to have been chosen for all of this.

 

Precious friends, my hope is that because of Jesus, your life with be spectacular and filled with beauty. I realize that not everyone has the same story as me. Not everyone gets the earthly miracle. I wish that were the case, I wish it more than you know. But know this Truth : If you know Jesus, your story ends well! Though your story may look different, He is unchanging. He will always sit with you, walk with you, and hold your hand. He will never let go. If you choose Him, He will be your forever Best Friend!

 

Every night for my entire life my dad would tuck me into bed, pray and then as he turned out my light he would tell me what we call “the three things.” It is kind of my family’s way of saying “I see you, I care about you, I want you to know…”

People don’t hear these sweet truths enough so I want you to know…

 

  1. I love you very much. 2. I think you are special. 3. And I am very proud of you.  

Be Brave, Shelby Elyse Taylor

instagram :: @shelbyelysetaylor 
twitter :: Shelby_Brave

 

  1. Barbara Kaferle

    May 10th, 2019 at 10:07 pm

    As I read your story witch I already knew, just brought back so many memories. The way you wrote it was so very beautiful. I remember being there when you were born and what effect it had on your Moms body and still does. There was no doubt about Gods presents in that waiting room when you had your brain surgery for 21.5 hrs. You are such an example of God hand in your life. I love you sweet Shelby. I cried through the whole story.

  2. Lesa

    May 11th, 2019 at 12:00 am

    Miracle girl…I love you.

    Lesa

  3. Denise Fabian

    May 11th, 2019 at 1:30 am

    She is one amazing lady! Working in pediatric palliative care, I hear these “worst case scenario” conversations often…and yet, like with Shelby, God has the final say!

  4. Sandy Scoville Rice

    May 12th, 2019 at 2:35 pm

    You are a miracle, and have been blessed beyond belief. God bless you.

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