World Down Syndrome Day 2017
This will be my 3rd World Down Syndrome Day.
A day that brings an interesting set of mixed emotions. What does this day mean? Do I really want to celebrate it? Or what am I celebrating? What am I supposed to DO?
Our first WDSD- I was still processing the whole diagnosis. Connor was a few months old, and a few months out of open heart surgery- I was still trying to get my bearings. I certainly did not want to celebrate a condition or disease (whatever you want to call it- that is for another blog...) that was the cause of my child having to have open heart surgery! A condition that rocked me to the core, and the more I learned about it (meaning the biochemistry- what is ACTAULLY HAPPENING........) scared the &%#(% out of me.
I probably "boycotted" our first WDSD.
But time has moved on, I have processed a lot, learned a lot...and loved a lot.
Trisomy 21. 3 of chromosome number 21. You have 2, Connor has 3.
So we have this extra chromosome here- this extra chromosome that has genes that are fully functional and expressing, and causing massive changes at the biochemical level that directly effect structure and function in profound ways. Mostly profoundly BAD ways.
And we have ways that we can HACK these genes- either by down-regulating them directly or through the up-regulation of other proteins that then down regulate over-expressed proteins, and this in turn, dramatically changes biochemistry- which then dramatically changes function, structure, health and vitality.
No- there is not currently "A CURE" (whatever THAT means) for Down syndrome. Or at least not yet- this is a little different that other diseases that are largely EPIGENETIC in nature. It's one thing to have mutated genes...it's another to have a whole extra chromosome.
For me, this whole thing is a glorious messy dichotomy....in which I can hold space to bless and be grateful- yes you heard that right- for the extra chromosome, while at the same time I am addressing it. I try not to think of it as 'fighting it". I don't want the energy behind that. I want to focus on what I WANT, versus what I DON'T want.
And to be honest, we don't KNOW for sure, all of the GIFTS the extra chromosome brings. We spend so much energy on how bad it is, that we don't look for or acknowledge the possibility that there might be some good. When you are an empath, and intuitive, you can sense those intangibles. There is something different, something unique, something extra that comes with an extra chromosome. This however is a VERY touchy subject in our Ds community.
For me, this is a day to try to bring some awareness about Down syndrome-
that it is not a contagious illness, or caused by incest, or a punishment from God......(please.........)
that people with Down syndrome have just as much potential as anyone else, especially when given the opportunities to succeed
that having a child with Down syndrome is NOT a burden- none of us are suffering
that the vast majority of babies with Down syndrome are aborted- based off of fear and misinformation and prejudice- there is a world wide genocide here- and it is important people know about it
that people with Down syndrome are more like you and me than they are different
that is it still ok that people ARE different. Different does not have to be a bad thing.
that people with Down syndrome learn, go to college, start business, have jobs, get married, have children...you know- have a life
you HAVE a diagnosis, you ARE NOT your diagnosis
you can have a diagnosis, and still be expressing health and vitality
that much of the biochemical complications of it can be treated- and more discoveries are being made!!!!
there are so many wonderful things out there- Targeted Nutritional Intervention, Neurodevelopmental programs, light therapy techniques.....so many things available to help people that can dramatically change lives
that even with all these things, there are still unknowns, people with DS that are struggling, and not responding to treatment- and so more research is desperately needed.
Researching Down syndrome is not "sexy". Much of the research has to be privately funded- which means organizations like https://www.lumindrds.org/ and www.http://lejeuneusa.org/ need your help and support.
Connor AND his diagnosis expanded my heart so much, I see the world differently now, I FEEL the world differently now. That just would not have happened without that blasted extra chromosome that I am frenemies with. #truth
Without DOWN SYNDROME my life would be totally different. And I am convinced not for the better. I am a member of a club, a tribe of other people lucky enough to have been chose to walk this path. I have met the most beautiful souls through this diagnosis. The mamas I have met have become some of the closest people to my heart. My life is better because of an extra chromosome, and I am so thankful God designed it that one.
One Extra Ordinary Journey. One Extraordinary Journey.
UN Secretary-General Ban Ki-Moon's message for first WDSD celebrated in the US- 2012
"On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all."
For more information, see www.oneextraordinaryjourney.com