The Fults FamilyJourney
At our five-month ultrasound, finding out we were having a baby girl was the best news! Our 3-year-old son was getting a baby sister and we were excited to use our favorite name, Madison Bella (Maddie Bells – aww!). Just a few moments later, our excitement turned to worry when we heard that our tiny baby had a heart defect that could require open-heart surgery, along with fluid in her brain that could cause any number of abnormalities. We wanted to be so happy to have the baby girl we prayed for over the past few months, but instead, we were filled with so many fears of the unknown. We let ourselves soak in the sadness for that night. The following day, and every day since, we set out to find answers and the best care for our sweet girl.
After a relatively easy pregnancy, and many ultrasounds later, Madison was born full-term and breathing on her own. We had a short NICU stay and then at only two months old, she had a successful open-heart surgery to close a large and small hole in her heart (VSD and ASD). At four, we learned that Madison had a rare brain abnormality called Agenesis of the Corpus Callosum (ACC). She is completely missing the middle part of her brain that connects the right and left brain together, causing things as simple as reading, being socially aware, riding a bike, swimming, etc. to be very challenging. At eight, Madison was diagnosed with Autism, Cerebral Palsy, and Reading & Writing Learning Disabilities.
There have been so many unknowns along the way, but we have taken each day at a time, and trusted that if we kept asking questions and seeking the best care, Madison would be okay. We knew one of the most important pieces was finding a school that could accommodate Madison’s needs.
Not only did we find a school that fulfilled this need, but we also found the best support system imaginable. Summit is our anchor, the place where Madison feels safe and empowered to grow academically and socially. Summit has given our family a community that encourages us through the hard times, cheers us on during the good times, and provides the right balance of support, coaching, and love. According to Madison, “Summit is the best school EVER!”.
After 10 years, hundreds (maybe thousands) of doctor and therapy appointments, and 5+ years at Summit Academy, Madison is absolutely thriving. She has wonderful friends, can name all the Presidents, adores all pets, and is willing to try anything, even scary and new things, like the fast slide at Calypso Cove. When Madison loves something, she REALLY loves it. Not only did she go down that slide once, but she also went down 20 more times on that first day! Madison gives the best hugs, has so much empathy, and believes that most things can be “fixed” with chocolate and a sweet, handwritten card.
Our once baby girl, who seemed so tiny and fragile, is so grown up now. We continue to learn that it is okay to not hit every milestone on time. Madison will get there, on “Madison time”, and in a way that fits perfectly along her path to being her amazing self. We are so proud of how far she has come and can’t wait to see what she will do next, with the support of Summit Academy.
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