You might be surprised that although almost 6 years have past I still remember our conversations as if they were yesterday. I remember you sitting us down, doing a diagram of our family trees and explaining to us the laundry list of characteristics and conditions which are closely associated with an extra 21st chromosome: low muscle tone, simian crease, sandle gap in her toes, leukemia, heart defects, gastrointestinal defects, reflux, hyperthyroidism, cognitive delay, obstructive sleep apnea, weakened immune system, frequent colds and upper respiratory infections including pneumonia, and Alzheimer's disease. It was an exhausting and disheartening list to listen to.
You might also be surprised that 5 years later, feelings of anger still surface when I think about your list, which was full of negativity, of fearfulness and of blight. It was one of the worst conversations of my life, to be perfectly honest.
I've come a long way since then. From being scared of the future and intimidated by the seemingly endless list of complications to being a confident mother, teacher and advocate who approaches meetings and appointments from a place of strength. From being in the shadow of the list, to being in the light of our experience.
There's something you need to know about the research about medical conditions which can sometimes come along with DS - it didn't tell me anything helpful or specific about MY child.
My child is her own unique individual whose life experience will be heavily influenced by our genes and our life. It will be influenced by my emphasis on early learning and on reading. It will be influenced by growing up as the older sister of identical twins. It will be influenced by growing up with experiences like hiking in the Rocky Mountains, watching the geese fly south and visiting her aunt on the East coast. It will be influenced by love, by laughter, by hope and by the acceptance that Phoenix will determine her own path in life - a path that is different than we originally envisioned, but a valuable life path nonetheless.
These are influences which the geneticist never mentioned.
These are the influences which shape a life, not just the presence of an extra chromosome.
Dear Geneticist, there are some valuable pieces of information which you missed, when telling us about some of the possibilities for our child.
You missed telling us that that she would bring my extended family closer together, that Phoenix would be the darling of the family and the favourite grandchild (sorry to the rest of the grandkids, please don't hold it against her). He didn't tell us that Phoenix is a great learner, would be reading by 5, that she would rock kindergarten and be into Frozen and Tinkerbell and Princess Sofia.
You didn't mention that Phoenix would happen to be in a subset of kids who are extraordinarily healthy with a great immune system. And not just compared to other kids with DS. She's healthy even when compared to typical kids her age: kicking viruses butts and never missing school. My preemie twins (now 2) seem to have the same constitution, so I'd wager their healthy immune systems are due to genetic inheritance from us too.
Dear Geneticist, my point is that children, and the potentiality of their life, cannot be quantified by an extensive list of things which could go wrong.
A life is more than a list of attributes, a list of complications, a list of negative possibilities which may or may not directly affect health and happiness. A life is more than that. Phoenix is more that that. We all are. And when we try to reduce the quality of a life down to a list of complications, we are doing something wrong.
Dear Geneticist, here is what I'd like to hear. I'd like to hear that people with DS are chasing their dreams. Children are being included in regular classrooms. Teenagers are getting jobs and learning independent living skills. Young adults are attending college programs designed to integrate young people with cognitive disabilities into college life. Adults are living independently, many with support, many in group home type situations and many with supportive roommates.
Tell parents about Jamie Brewer who acts in American Horror Story. Tell them about Lauren Potter who acted in Glee. Tell them about Karen Gaffney who swam the English Channel. Tell them about the dozens of young entrepreneurs who are selling their art, their sewing, who are writing books and telling their stories. Please, just tell parents something good about their precious baby who has just come into this world.
