It started with her favorite princess, Cinderella.

We were singing, laughing, and talking about her favorite things while I gave Kaidyn her evening bath. She was three years old. She could talk your ear off and loved to tell some creative stories while playing in the bath. She started telling me about her favorite princess, Cinderella. Except the name, Cinderella, got jumbled as she said it. I immediately noticed and asked her to say it again and again. Her dad and I listened as she tried over and over. I remember it clearly. It was the first of many words she lost the ability to say. Over the next three months nearly every word she knew how to say and used daily disappeared. Words became garbled.

Incomprehensible. She became frustrated and inconsolable. Her words were gone. She cried all the time. The behaviors started. She bit, hit, and started hitting her head against things. They said she couldn’t stay at her Montessori Preschool. We pulled her out and struggled to find out what was happening. Her pediatrician wasn’t concerned. He suggested we monitor her and come back when she turned four to start speech therapy. I remember that day. I knew in my heart and soul something was very wrong with my girl. That was the last time we saw that pediatrician. The fierce mama bear in me started its journey.

Over the next few months we saw every specialist with our health care plan to figure out what was going on. Shortly before Kaidyn turned four, we were given a diagnosis. Landau-Kleffner Syndrome. Also known as Acquired Epileptic Aphasia.  Life as we knew it was over. We would never be the same again. Our silent journey had begun. This journey was filled with specialists, testing, hospital stays, blood draws, speech therapy, occupational therapy, physical therapy, applied behavioral therapy, seizures, seizure medications, drug-resistant seizures, different types of seizures, EEG’s, MRI’s, a vagus nerve stimulation implant, and so many tried and failed medications and treatments. Through this journey our goal was to stop the seizures, help Kaidyn find her voice, and make sure she felt loved and as happy as she could be. These were some very difficult years of roller coaster ups and downs and a lot of sleepless nights.

In 2015, Kaidyn’s neurologist recommended whole genome sequencing. We did the blood work and waited for the call to review the results. When we went in to go over them, we were shocked that there was only one gene mutation that stood out. Something we’d never heard of or knew could happen. They gave us a blue folder with printed results and articles printed out about GRIN2A. We learned Kaidyn has a de novo GRIN2A mutation. We listened, but they really didn’t seem to know much about it yet and gave us the blue folder of printed articles and abstracts. We were grateful to have a reason for her Epilepsy and Aphasia but we still didn’t know what to do about it. I wanted to fix my little girl. I wanted to rescue her from this silence and loss. I wanted to make it all better and I could not. We could not. We had to pivot and accept this journey, Kaidyn – as she is, and our lives – as they are now. Over the years we had to work through grief, loss, and sadness. We created joy, memories  and found the positives every chance we could. We slowly learned to come out of crisis mode. I found another mom with a son who had GRIN2A. I was ecstatic. This mom, Amber, started a Facebook support group. More families joined. We started learning more about this rare gene mutation. We were not alone anymore. This tiny group kept growing and growing. The more we connect and share the more we learn and heal. 

Kaidyn has continued to learn, grow, and develop her own way of communicating. Her intense strong-will and determination are positive traits that have helped her considerably through this journey. She has developed likes and dislikes and makes them known. She found her strength and has thrived in this place of unconditional love and support. Her humor is evident without words. She can make an entire room laugh when she’s being silly. Her smile lights up the room and you can feel her happiness. When she looks intensely at you, she looks deep into your soul and communicates in ways we do not. She is a great judge of character. There is no sugar coating with Kaidyn. It is how it is. She is bold and brave and tells you how it is – without words. 

Kaidyn is 20 now. She still loves her Disney princesses. This year her school dance theme was the Magical World of Disney. She didn’t choose to be Cinderella as I expected. Instead she was Merida from the Disney movie Brave. She was a girl who was brave, strong, wild and free and made her own destiny. She is Kaidyn. We don’t know what this life will be like, but we know we’re on this journey together.