Tiny Light Connor
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Connor
After a negative result of the Triple Screen test for chromosomal abnormalities during pregnancy, the diagnosis of Down Syndrome on the third day of Connor’s life came as a complete shock to his parents.
Related: What is Down syndrome
Feelings of shock, heartbreaking loss, anger, and self-blame quickly diminished. Taking their place is the feeling of being completely blessed. While they have spent more time than they’d like to think about in waiting rooms for cardiologists, ENT specialists, blood labs, spine clinics, etc, five-year-old Connor has a way of lighting up a room with his smile. For this he is a Tiny Light.
Related: Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves
Any parent knows what it’s like to second-guess themselves. It comes with the job. Connor’s parents constantly feel torn over knowing what is best for their son. There are so many potential treatments and procedures, such as neuro-developmental exercises, applied behavioral analysis, etc. “A person could go broke trying all of the alternative treatments out there with no guarantee of results.” Connor’s mother spends a lot of time stimulating her son, practicing flash cards, and playing language games in spare moments. She admits that this often gets overwhelming.
Connor, like most children, loves music. He loves singing and dancing. He loves to run. He has a fascination with the dark and anything outer-space related. Connor loves to hug. The ability to love big is a common and beautiful trait of people with Downs. At dinner he will go around the table to hug ever member of the family (including the nanny and the cat!).
Connor’s parents do have insecurities about his future. Whether or not he will speak is one of their main fears. His mother says that she will continue to work hard to ensure he is financially stable among other things. “I hope to teach him to be his own self-advocate. I want him to have good social network and above all, positive self-esteem.”
Down Syndrome
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Photos by Melissa DePape Photography
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This post originally appeared on our September/October 2011 Magazine
