Hi, my name is Tim Costa and I am a 16 year old junior at Pelham High School in Pelham, NH. I am on the varsity soccer, basketball, and baseball teams at my high school. I am a member of the American Technology Honor Society and participate in the Leo Club (a high school based community service organization). I have recently been recommended to attend a NHIAA-sponsored Captains' Leadership Workshop by my school's athletic director and have been nominated for my high school's National Honor Society Chapter.
I am the oldest of five children in my family. My 15 year old sister, Amy, a freshman at Pelham High, was diagnosed with Aicardi Syndrome at six weeks old. Even though she is severely developmentally delayed and has faced innumerable medical challenges (seizures, tracheostomy, gastrostomy tube, and 42 trips to the operating room), she has always remained an active, positive, accepted member of our family, school, and community. My other siblings are 14 year old Ricky, 12 year old Laurie, and 6 year old Joseph.
At the 1998 and 2000 International Aicardi Syndrome Conferences, I participated as a member of the Sibling Panel and addressed questions and concerns from the entire conference assembly. Apparently, we were a "hit" and Denise Park Parsons later told me that the insight we provided was an invaluable tool for the attending parents. We were successful in letting the younger parents know that it was possible to raise happy, healthy, well-adjusted siblings in light of the challenges faced by our developmentally delayed sisters.
I recently came up with the idea of having a place for the siblings of children with Aicardi Syndrome to open up and share with someone who could understand what they were going through on a daily basis. I want to thank Ande Glasmacher for making this option a reality. I know that life for our sisters with Aicardi Syndrome can be very difficult but it can also be challenging for the siblings of these girls. I want to make my e-mail address available to any child who wishes to write. Sometimes it's hard to share our concerns with our parents because they are dealing with so much already and we don't want to worry them more. Since most of our friends don't have handicapped family members, it can be tough for them to relate to what we are experiencing also. Here, we can write to each other and provide some support and advice within a private, safe realm. If this idea really takes off, Ande has said she could set up a private chatroom for us to meet for online chat. I am also hoping that if any siblings have things they'd like to post (stories, poems, etc) that Ande can put them onto this section of the Aicardi Syndrome website. I suppose we could even ask Kelli Hopkins to set up our own Aicardi Sibling listserv if enough interest is shown over time. I would like to dedicate this section of the website to my sister, Amy. When I was in sixth grade, a large, local New Hampshire newspaper sponsored a Thankful Thoughts Contest, and my classmates and I were required to write 100 word essays on "What I am Thankful For". Following is my submission, which took top honors out of 825 entries.
"I am thankful for my sister. Amy was born with a syndrome that has left her multi-handicapped. Amy cannot talk but has taught me to be thankful for good eyesight, strong legs, healthy lungs, and a quick brain. My sister is legally blind, in a wheelchair, breathes through a tube in her neck, and struggles to learn even simple things. Mostly, I am thankful to her for showing me that even if you have many problems, with the right attitude, life can still be good and smiles can still come easily."
Five years later, I still feel the same way about her. She has been a wonderful inspiration for me and I am proud to be her big brother. Please feel free to write to me about anything you need to share.
Thanks,
Tim Costa
01-02-2002
