Stories have a way of making us. Our words penned here on this Earth are so very tethered to the beats inside our chests. And how we use those very pulses to make this walk one that matters is just exactly why He writes ours.
And writing? Well, it takes courage. It takes a belief bigger than oneself to really own the dotted i's and the crossed t's that you scribble. Breathes here on this global terrain aren't just because. And knowing that all while grabbing your pen is how beautiful stories aren't just shared, but better stories in others are composed.
Today I introduce to you my family. A piece of the people that I call mine. Their story is one that is bringing hope & holy to each person that they meet. It is one that brings them to a place of absolute joy and unbelievable pain. And they still pick their pen up each & everyday. May we all be reminded of the beauty in each i and every single t that we are given. And for your courage, Kim & Adam? I will never neglect the ink that belongs in my very heart for you.
Plain. Simple. Ordinary.
Those are the words that come to mind. Our story is nothing fancy nor fairy tale. It begins very normal and habitual. Two typical twenty year olds from one very SMALL town. Yet, our paths had not crossed in 22 years. Thanks to a passion we share- music- our paths finally intertwined. The rest of the summer and fall we were inseparable. Then the story takes a typical twist- girl chases guy. Guy is busy in his own world. Time separates our story. Our paths go a different direction. To this day I can’t remember how our story picked back up, but I am thankful that it did. Because this time our story becomes anything but normal.
We were a content couple. Love stronger than most. Partnership was our goal, but independence was still our strength. Then the surprise comes. In the midst of enjoying being carefree, we find out that we will be adding a blonde hair, blue eyed little girl named Mollye. Life forever changed. Our story had a purpose.
For myself, I knew the one thing I was meant to do in life- be a mommy! It was a dream come true. Children are my passion. I had taught numerous kids, but nothing compared to the moment my eyes met those of that sweet girl. Again our story becomes normal, plain, simple, and ordinary.
Marriage had happened. Work remained constant. Our focus was on our family.
Mollye still remains my biggest surprise in life. I knew we were ready to add a sibling, but being the well-planned, OCD, and overly organized person I am; I knew I needed a plan this time. We strategically planned everything. I coordinated schedules to ensure I would be able to leave work right around Spring Break. I wanted this baby to be born in the spring. I wanted to enjoy all summer with my baby.
Life is never meant to be planned. I learned this.
Twelve weeks into our pregnancy I began bleeding. I remember begging God and pleading please just let this baby be healthy. Unfortunately, Placenta Previa became my constant google search. Life became anything but planned or normal. Workouts had to stop. No picking up my three year old. Home rest was ordered. I hated it all. I was mad and upset that this was the pregnancy I was experiencing. However, I felt the presence of God and his strength telling me it is only nine months. You can do this. Well we made it almost 33 weeks. Mallory who was supposed to be born in April arrived on February 28, 2012. Fifty one minutes shy of leap year. This date becomes very important in our story.
The next year of life is perfect! We have the perfect family of four. The family you dream about from the time you are a little girl. Mollye is and remains the best sister ever. She is so helpful and mature for her age. Mallory was a wonderful baby. Always happy. Always content. Always loving. Always smiling.
Our story really begins when Mallory turns one. Mallory’s gross motor skills had not developed in the typical progression. At one, she was not even close to walking. No one seemed concerned but myself. For those doubting- remember a mother’s intuition is always correct! Premature. That was the word used over and over to describe our dilemma. It was not enough for me. I wanted answers. Frustration would not win. I would not settle. Fast forward approximately eighteen long months. Answers were here.
Mallory finally had a diagnosis. A diagnosis no family wants to hear and no doctor wants to give. She has a RARE disease known as Niemann Pick Type C.
For lack of better words it is brutal and ugly.
It has taken my sweet girl who had her best could walk fourteen steps, eat with utensils, and speak over forty words to a child who now relies completely on others.
She is incapable of sitting and her latest problem is swallowing. Ultimately it will take her life. So you see our story is anything but normal now. Our story is RARE. It is unfinished. In fact, it's just beginning.
Rare Disease Day. Also Mallory’s birthday.
God does have a plan. We witnessed that when we asked our community to come together to raise awareness and celebrate Mallory’s 3rd birthday.
Amazed and forever thankful. Mallory has only lived a short three years, but she has changed not only our story but many others.
To follow, support & connect with Mallory's story, please visit Go, Mallory. Go. This is the family's Facebook page used to increase awareness of this rare disease as well as be a source of support for other families who might be facing this similar story.