Tony C.Runner Up
Tony’s Story
 

On August 16, 1997 my whole world changed. I was the happiest dad in the whole wide world. My ex wife and I had two girls but this was going to be my first boy. I did have a stepson that I loved like my own son and still do, but Tony would be the one to carry on the family name. I was bursting with joy and was so proud, as I never imagined I could have a son. I noticed that Tony was not active like the other newborns, and when the Dr. lifted him up I saw a look of concern. The Dr. said that he wanted to run tests on Tony as he weighed under 6 pounds when he was born and he did not appear to be very responsive. I attributed this to him being a newborn, and I told myself it would be okay, but I never imagined that my son would be unable to walk, talk, or do any of the simple things we take for granted. The geneticist would later give my son a diagnosis of Glutaric Aciduria Type II, a genetic disorder. How could this happen?

Who was to blame? Was it my fault? Was it his mom's fault? I needed to find an answer, and the Dr. said that it was no one’s fault, he had a genetic disorder and no one was to blame. My son would forever be unable to walk or talk or run or play catch and that killed me inside.

When he was a toddler he would lie in my arms and just stare at me with a look of love. That was his way of telling me that it was okay! It was his way of making me feel better without saying a word. I always go back to 1982 when I went to my best friend’s house. He had an older brother who was mentally challenged and a sister with Down Syndrome, and I asked my friend’s dad how he managed with not one, but two special needs children and his answer to me was, “God gives special children to special parents.” Was I a special parent? Could I fill the shoes that God had asked me to fill when he gave me a son with special needs? A son that cannot tell me when he's hurting, sick or hungry? A son that cannot tell me he needs to be changed, or wants to get out of bed or what TV show he likes?

Tony is now 16 and he has taught me more than I could ever teach him, and he has given me more than I could ever give him. When he wakes up in the morning and flashes his big beautiful smile which is his way of saying good morning, my heart is overjoyed. And when he gets ready to go to bed at night and he bends over to kiss me goodnight I know everything's going to be alright. He still cannot walk, or talk but his facial expressions and the noises he makes help me to understand that I am doing the very best for my son and that I love him unconditionally and he knows that and feels it.

Am I a special parent? I don't know about that, but I do know that my son is a special boy and that my friend’s dad got one thing right, my son is special. I thank God that he chose me to be his dad and caregiver, as there is no other responsibility that I would or could have that would give me greater joy.



Shield HealthCare's
13th Annual
Caregiver Story Contest
Shield HealthCare recognizes the demanding roles and responsibilities of today's caregivers. Whether you are a family caregiver or a home health professional, we would like to hear your story about “What Makes Caregiving Rewarding?”. Submit your story for a chance to win a prize!
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