Shopping Cart
Your Cart is Empty
There was an error with PayPalClick here to try again
CelebrateThank you for your business!You should be receiving an order confirmation from Paypal shortly.Exit Shopping Cart



World Down Syndrome Day 2017

Posted on March 21, 2017 at 3:05 AM

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's another to have a whole extra chromosome.


For me, this whole thing is a glorious messy 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 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 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 and www. 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

Categories: None

Post a Comment


Oops, you forgot something.


The words you entered did not match the given text. Please try again.


Reply golden goose sneakers
6:47 PM on August 29, 2021 
I wanted to compose you one very little remark so as to give thanks again with your lovely suggestions you have shared on this site. This is quite seriously open-handed of people like you to give freely exactly what most people would've offered for sale for an e book to earn some dough for their own end, even more so seeing that you might have done it if you ever wanted. The guidelines as well acted to be the fantastic way to recognize that someone else have the same passion like my very own to see much more around this issue. I am sure there are many more pleasant situations in the future for folks who browse through your site.
golden goose sneakers
Reply stone island outlet
12:20 AM on August 30, 2021 
I precisely wished to thank you very much again. I am not sure the things I could possibly have followed in the absence of the type of secrets discussed by you regarding my industry. This has been a very depressing matter in my position, nevertheless looking at your well-written approach you resolved that took me to jump over happiness. I am thankful for the advice and even pray you recognize what a powerful job that you're doing teaching others thru your web page. I know that you haven't got to know any of us.
stone island outlet
Reply golden goose outlet
12:22 AM on August 30, 2021 
My husband and i ended up being so fortunate that Edward could conclude his web research by way of the precious recommendations he made from your own web page. It's not at all simplistic to just choose to be giving for free tips and hints which others could have been making money from. So we acknowledge we now have you to give thanks to for that. Those illustrations you made, the straightforward site navigation, the relationships your site make it possible to promote - it's got all astonishing, and it's facilitating our son in addition to the family believe that that issue is amusing, which is tremendously serious. Thank you for all!
golden goose outlet
Reply jordan shoes
10:54 AM on August 30, 2021 
I would like to point out my appreciation for your kind-heartedness giving support to men and women who need guidance on this one question. Your personal commitment to passing the solution all-around turned out to be unbelievably insightful and have continuously encouraged associates much like me to reach their ambitions. Your new useful report signifies this much to me and even more to my peers. Thanks a lot; from everyone of us.
jordan shoes
Reply jordan 6
9:57 PM on August 30, 2021 
A lot of thanks for all of your hard work on this website. My mother takes pleasure in working on research and it is easy to see why. A number of us know all relating to the powerful ways you produce priceless solutions via your blog and therefore strongly encourage response from other people on that matter and our favorite daughter is actually learning a lot. Have fun with the remaining portion of the new year. You are always conducting a fabulous job.
jordan 6
Reply curry shoes
7:59 PM on August 31, 2021 
I am glad for writing to let you know of the beneficial discovery my cousin's princess experienced studying your webblog. She came to find lots of things, with the inclusion of how it is like to possess an incredible helping character to let the rest with ease know just exactly selected tortuous subject areas. You actually did more than her expected results. Thanks for showing these interesting, trustworthy, explanatory as well as unique tips about this topic to Mary.
curry shoes
Reply golden goose sale
12:05 PM on September 1, 2021 
I happen to be commenting to make you understand what a remarkable encounter our girl gained going through your blog. She mastered too many things, which include what it's like to have an amazing giving mindset to make the rest quite simply learn about selected hard to do matters. You undoubtedly did more than our expectations. Many thanks for displaying such priceless, trusted, informative and also cool tips on your topic to Kate.
golden goose sale
Reply supreme clothing
10:43 PM on September 1, 2021 
Thank you so much for providing individuals with an exceptionally nice opportunity to read critical reviews from here. It really is very cool and also stuffed with a lot of fun for me personally and my office fellow workers to visit the blog minimum three times per week to read through the new guides you have. And indeed, I'm also at all times contented with the perfect principles you give. Selected 1 tips on this page are unquestionably the most efficient I've ever had.
supreme clothing
Reply air jordan 1
4:23 AM on September 2, 2021 
I enjoy you because of every one of your effort on this website. Gloria really loves doing internet research and it is easy to understand why. Most of us learn all concerning the lively manner you make functional suggestions on this web blog and as well increase response from some other people on this theme then my simple princess has been starting to learn a great deal. Take advantage of the rest of the new year. Your performing a tremendous job.
air jordan 1
Reply yeezy 350
8:16 PM on September 2, 2021 
Thank you a lot for giving everyone remarkably nice chance to discover important secrets from here. It's usually very awesome and full of a good time for me personally and my office fellow workers to visit your blog at the very least three times in a week to learn the new stuff you have. Not to mention, I am always amazed considering the outstanding pointers served by you. Some 2 areas in this article are in reality the most beneficial we have had.
yeezy 350
Reply golden goose
12:08 PM on September 3, 2021 
Thank you so much for giving everyone an extremely memorable possiblity to read in detail from this website. It's always so brilliant plus jam-packed with amusement for me personally and my office peers to search your site a minimum of thrice a week to find out the newest secrets you have got. Not to mention, I am also always amazed with all the remarkable information you give. Some 2 facts in this posting are essentially the finest I've ever had.
golden goose
Reply moncler
10:53 PM on September 3, 2021 
I have to get across my appreciation for your kindness supporting all those that actually need help with the niche. Your personal dedication to getting the solution all around ended up being pretty good and have really allowed girls much like me to get to their targets. Your entire insightful facts can mean so much to me and additionally to my office workers. Thanks a lot; from each one of us.
Reply air jordans
4:39 AM on September 4, 2021 
I am commenting to let you know of the remarkable experience my wife's girl enjoyed using your site. She figured out plenty of issues, which included what it is like to have a marvelous helping mindset to let the others quite simply fully grasp various grueling subject areas. You really surpassed readers' expectations. Many thanks for offering such helpful, safe, edifying and unique guidance on your topic to Tanya.
air jordans
Reply curry 6
12:45 PM on September 5, 2021 
I truly wanted to construct a simple remark to be able to appreciate you for those pleasant steps you are giving on this site. My prolonged internet research has finally been recognized with extremely good details to talk about with my co-workers. I would point out that many of us website visitors actually are really blessed to exist in a good site with so many perfect people with interesting solutions. I feel very much lucky to have come across your entire web page and look forward to many more awesome times reading here. Thanks a lot again for all the details.
curry 6
Reply kyrie irving shoes
11:26 PM on September 5, 2021 
I simply desired to thank you so much once more. I am not sure what I might have achieved without the pointers shared by you regarding this area of interest. Entirely was a real traumatic scenario in my view, however , seeing a specialised style you treated it made me to jump with happiness. Now i am grateful for your work and even hope that you find out what a powerful job you're carrying out instructing the mediocre ones all through your blog. More than likely you haven't got to know all of us.
kyrie irving shoes
Reply kyrie 7
1:44 AM on September 6, 2021 
I would like to express my admiration for your kindness for women who really want help on this particular subject. Your personal dedication to passing the message all around came to be remarkably productive and has allowed ladies like me to achieve their goals. Your useful recommendations entails a great deal a person like me and extremely more to my fellow workers. With thanks; from each one of us.
kyrie 7
Reply bape
8:47 PM on September 6, 2021 
I definitely wanted to make a quick note to be able to appreciate you for some of the precious advice you are giving here. My prolonged internet research has finally been honored with sensible insight to share with my companions. I would state that that we site visitors actually are truly endowed to live in a fine community with many perfect individuals with very helpful things. I feel quite blessed to have come across the site and look forward to some more amazing moments reading here. Thanks again for a lot of things.
Reply golden goose sneakers
2:15 AM on September 7, 2021 
Thanks so much for providing individuals with a very marvellous chance to read in detail from here. It is always so amazing and also stuffed with a great time for me and my office acquaintances to search your site the equivalent of three times weekly to learn the latest issues you have. And lastly, I am also usually fulfilled with the dazzling information you give. Selected 1 facts in this post are unquestionably the most suitable we've had.
golden goose sneakers
Reply a bathing ape
12:27 PM on September 7, 2021 
I wanted to post you the little bit of note in order to say thanks as before with the pretty basics you've featured here. It was certainly wonderfully generous with people like you to offer unreservedly exactly what a number of us would have marketed as an electronic book in making some cash on their own, primarily now that you might well have tried it if you ever decided. Those good ideas also served like the great way to comprehend some people have the identical eagerness like my own to find out great deal more related to this matter. I think there are numerous more enjoyable opportunities ahead for those who check out your site.
a bathing ape
Reply moncler jackets
11:01 PM on September 7, 2021 
I actually wanted to make a small remark to be able to say thanks to you for all the wonderful guidelines you are sharing here. My long internet look up has at the end of the day been recognized with extremely good points to share with my companions. I 'd assume that most of us website visitors are definitely endowed to live in a really good site with very many marvellous people with useful hints. I feel rather lucky to have discovered the webpage and look forward to some more pleasurable moments reading here. Thanks a lot once again for all the details.
moncler jackets