As I've written about in the past, the path to acceptance was a pretty bumpy journey for me. It took me a long, long time to be ok with DS. I wasn't able to join any of the DS groups or functions becasue the 'reality' of older children and youth with DS was too much for me to handle. Part of what upset me about seeing these kids and adults was how low functioning some of them appeared to be. That it was obvious that the world was passing them by. That they weren't participating in it. That they didn't have relationships outside of their caregivers or relatives. And although lives have value in and of themselves, and that low functioning does not = low value - it is still upsetting picturing this as Phoenix's future.
As I have gotten to know Phoenix and seen her bright, inquisitive mind open and grow, I have realized that this is not her future. She is bright. She is funny. She can learn. She participates in her life. The world does not pass her by. She is engaging to others and brings them into her world.
Having realized that Phoenix's future is open and bright, I have a much easier time joining DS activities. We went to a lodge this weekend with our local DS community. And had a fabulous time, both as a family and as a community of parents whose children have this extra chromosome. It's nice to be part of a group of people who 'get it'. Who have similar experiences with the challenges and joys of raising children with DS. And who embrace our kids for who and what they are - instead of what they aren't.
One of the attendees was particularly interesting to observe. She was 25 years old and had DS. She was petite, well groomed and put together and wore fashionable clothes. She was really very pretty. She had poise. Poise! She attended with her brother and his family. Husband spoke to the family on Saturday and asked if the brother was guardian. Nope. This woman lived with her mother, but was more than ready and able to live on her own. Her mother just wasn't ready to let her go yet. And she in no way was a burden to her brother or to her mother. She was a full participant in her life, her family and her community through her volunteer work. This is the future I see for Phoenix. This is why I have hope.