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Father of Two Sons With Fragile X Syndrome Wins Story Contest Grand Prize

Gina Flores
Caregiver Advocate | Shield HealthCare
01/13/12  6:38 PM PST
Fragile X Syndrome

Congratulations to Matt G., caregiver for his two sons with Fragile X Syndrome in Olympia, WA.

Matt was one of three caregivers awarded the $1,000 grand prize in Shield HealthCare’s 11th annual “What Makes Caregiving Rewarding?” Story Contest.

Matt’s Winning Story:

My story begins like any other expectant father. Finding out I was having a son at one of the ultrasound appointments was like being told I won the lottery. All I ever wanted was a son. Matthew had a typical birth; I was on my way to my future pro football star. After about 6-8 months of not hitting his milestones he was assessed and began early intervention. Matthew had developmental delays and needed physical, speech and cognitive therapy. I was devastated. It seemed like all my hopes and dreams for my boy were gone.

I learned that I was to have another son. Ryan also had delays and soon the boys would both be diagnosed with Fragile X, a genetic disorder that they would have to deal with for the rest of our lives. My world was upside down, life as I knew it was over; two boys both with a disability, I was unable to go on. I fell into a deep depression, not wanting to go to work or get out of bed, but the one constant was the love that I felt for my children.

At a doctor’s appointment, a genetic counselor came over to me, looking like a moping mess and she said, “How can I help you get through this?” I looked at her as if she was crazy and I said, “How can you help me? My life is ruined. All the expectations I had for my boys are gone.” Then she said to me the words that changed my life, “Honey, is that what you are upset about? Children haven’t been living up to their parent’s expectations for a long time.” From that moment on, I began to see things in a new light. Those were the words that started my transformation from a caregiver, to a man and a father. I was to become a stay at home caregiver and nurture my boys and assist them in a way few men get to do for their children.

Both boys required therapy five days a week and a level of care similar to that of an infant. So for me, it was many diaper changes, feedings etc. I began to view life in a whole new way. The little things in life began to matter so much more. My experience with my children’s disability was making me more of a man. As you get older, wiser and begin to put your life in perspective, you realize that sometimes the path you had chosen to walk down may not be the path life has chosen for you. It has truly become a life-altering experience.

I have forever been changed by two souls that have struggled to roll over and sit up, or use a spoon, but have always had a smile on their faces. I watched them take steps, at two and a half, but they did it. I was so proud to be part of that moment; it was like a privilege to see those boys who struggled in physical therapy for years apply what they learned to walk. They are both on their way to living a happy life and taught their father a lesson in humility, graciousness and perspective.

I now work as an outreach coordinator for a special needs organization to help other caregivers turn their adversity into a life changing experience. And let them see that there can be light at the end of that tunnel; you just have to be willing to open the windows to your soul to let the warm glow imprint on you.

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