Web support for parents of childern with disabilities
Jun 03 '00
The web has become an incredible tool for finding information and support for parents who have children with disabilities. I was overwhelmed by the support that I found on-line after the birth of my daughter Emily.
Emily was born in September of 1997 with a unilateral cleft lip. This basically means that her upper lip was in two pieces when she was born. I knew virtually nothing about clefts when Emily was born. I was devastated that my child had a facial birth defect and worried about her future. I can remember feeling so alone at the hospital. I was put in a recovery room with another mother who had just given birth. She had people in and out of her room raving about her beautiful new born baby. I remember laying on my hospital bed staring into my daughters eyes confused at how this happened, blaming myself for her cleft, and feeling very alone.
When I got home I spent many hours in my room crying and holding Emily. My doctor had given me some phone numbers for local support groups, but I just could not bare the thought of talking to people that I didn't know. One evening when Emily was sleeping I logged onto my computer, went to a few of my favorite search engines and typed in "Cleft". I spent the next few hours (day, weeks, months, and now years) reading, learning, crying, and laughing. I found pictures of children before their lip was repaired, after their lip was repaired. I found stories from mothers about their experience with a cleft affected child. I started to feel not so alone. I started to learn about clefts: who, when, why, where, and what to do. Most importantly though I learned to look past the cleft and enjoy my beautiful baby girl.
I don't know what I would have done without the knowledge and support that I gained on the web after Emily was born. I do know that I was able to enjoy my baby and I looked past her cleft. I believe this has a lot to do with the knowledge and maturity that was gain through the support of my on-line community.
After receiving so much support on-line, a good friend and I decided that we wanted to offer a place for people to go on the web to get support on cleft related issues. We built www.cleftnotes.org in October of 1998. Cleftnotes shares pictures, and stories of children born with clefts.
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Epinions.com ID:
lhinz
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Member: L Hinz
Reviews written: 6
Trusted by: 7 members
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