Kelly, Kylie, Madison, Molly
Podcast Episode Show Notes
God is in Your Story
Before time began God was writing your story. He knew there would be pain, but His purpose for your life is greater. He knew you would ask why, so He gave us His Son – the ultimate answer.
Kelly’s testimony is evidence of the unwavering truth that God is in every detail of our story. The circumstances you can’t comprehend. The joy and the pain. The tears and the laughter. The brokenness and the breakthrough. It’s a story of surrender. I hope that you are moved by Kelly’s story and encouraged that God is in your story too.
Featuring
Kelly Marcucci
Madison Joy made her grand entrance into this world Saturday September 6, 1997. Coming in four and a half weeks early. Everything about my pregnancy was normal. It was a very exciting time in my life as many people I knew were having children. Madison was diagnosed with Jaundice and had to remain in the hospital until her bilirubin levels came down. On Thursday September 11th we were finally going home. Prior to departure the doctor entered the room and gently stated “Your daughter was born with a rare genetic disorder. She has a deletion of the long arm of the 14th chromosome. You have an appointment at Buffalo Children’s Hospital on Monday”. I was devastated. The longest weekend of my life. Expecting all the answers from the doctors only to hear, “Madison is going to write her own book”.
There were and are many times that I have been angry with God. However, there are many days that I know I would never get through if it were not my faith in God. I try very hard to make the right decisions for Madison but find that I am always second guessing myself. When I get to that point I typically cry and say, “God I surrender this to you”.
Over the years there have been many challenges and triumphs too. There are many times I feel alone. I get anxiety going out in public because I never know what Madison’s behaviors will be. I also have to worry about how people will receive us. Then a stranger will ask Madison, “Do you like the Buffalo Bills”? Madison was wearing a Buffalo Bills Jersey. The good Lord put that person there to say “Relax, take a deep breath Kelly. It’s going to be ok”.
I fear the future. This is me. Madison at 25 years of age. I bath her. I brush her teeth. I do her hair. I assist in choosing appropriate clothing. I prepare each meal. I cut up the food to prevent choking. I administer medication. I wipe her mouth. I wipe her hands. I wipe her bottom. I make all appointments. I transport to appointments. I am her voice. I am her protector. I hold her hand. I kiss her good night every night and tell her good night my sweet angel. I second guess myself every day. Am I doing enough?
Many people have said to me over the years, “I don’t know how you do it”? I have been called a hero for caring for my daughter. I have met so many wonderful people throughout the years that I know I would have never come to meet if it were not for Madison. I would not be sharing our story. I have come to realize that God has written our story and I am exactly where I am supposed to be.
Welcome to Holland
Kelly lives by the deep meaning of Welcome to Holland by Emily Perl Kingsley.
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack. your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
Read more here.
About the Disease
You can learn more about Rare Genetic Diseases called Leukodystrophies here.
About Newborn Screening
Learn more about how early detection through Newborn Screening saves lives.
