Thursday, 19 November 2015

Does DS define me?

Like so many other people, I like to think that DS isn't a huge part of my life. That what defines my life is my family, my job, my marriage, my friendships etc.

There's a new FB "game" where an app can access your FB posts and compile a list of your most commonly used words on social media. My most commonly used word is Down syndrome.

So while DS doesn't define me, it sure does occupy a lot of my mental energy and my focus. I think about it. I write about it. I photograph it. For 5 years I've been mentally and physically integrating it into my life. It's a part of me - an important part, a beautiful part.

Is DS an important part of your life too?

Thursday, 12 November 2015

Dear Geneticist

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. 

Thursday, 29 October 2015

Some new pictures

This was last night with out after dinner walk. We met a neighbour who was walking her dog. Our neighbour made a point of taking the dog home quickly so she could grab a muzzle and allow the kids to safely interact with her cranky dog. The kids were incredibly gentle with Cleo and Cleo was great with them too and allowed them to handle her and Phoenix to walk her for a while.

This is Phoenix admiring a bare tree.  
On the public picnic table. 

Dancing. Because, why not?

Ash having fun

Out on an adventure with Jen

Phoenix taking chances on our climber

Phoenix practising her driving skills

I got to have some one on one time with Wren recently. It was so relaxed to have just one small person to care for

This was the girls first look at the pumpkins I bought for carving

Phoenix helped Grandma make soup

This was their (Ash and Wren's) first time to a local park
Phoenix immediately made a line for the swings and waited patiently for her turn. She's a total pro at the park and is so good at staying close and listening to our instructions
We met a park kid who decided he wanted to push the girls. He was a good little companion for a while



This was another walk a few weeks ago. We are all really enjoying the mild fall weather