Hope you all are doing well and life is being good to you.
I am writing to let you know about a particular day of awareness. I know there is a day for everything, from National Donut Day (June 7) to Do a Grouch a Favor Day (Feb 16). Well, March 21 is known as Absolutely Incredible Kid Day, Common Courtesy Day, and also World Down Syndrome Day. Yes, World Down Syndrome Day (WDSD), a day to celebrate individuals who so happen to have an extra chromosome that makes them the unique, beautiful, bright, and amazing individuals they are. Some may even say Up syndrome, which I am all for, but that is another email. WDSD was first observed in 2006 in several countries, but it was on December 19, 2011 that the United Nations General Assembly declared the 21st of March to be WDSD, making I guess you can say the first official day of observance to be March 21, 2012. As seen on the WDSD website, “On WDSD 2019 we want people with Down syndrome and those who support them to tell the world "Leave no one behind"!” On this day, it is encouraged to wear fun, silly, colorful socks – so be sure to show your support and Rock your Socks on March 21!!
Do you know anyone who so happens to have an extra chromosome? I do, and she happens to be my AMAZING two year old daughter, Chloe. What is Down syndrome (DS) ? And why is it called DS? Good questions and questions I had after we discovered Chloe so happened to have an extra chromosome. There are three types of DS - Trisomy 21 (nondisjunction), Translocation, and Mosaicism. Chloe has Trisomy 21, which is the most common of the three types. I refer to it as T21 and the term I prefer to use when discussing her uniqueness. A simple explanation is - a person without DS has 23 pairs of chromosomes, which makes up 46. For a person who has T21, this means there is an extra 21st chromosome, causing them to have 47. Hence why WDSD is celebrated on March 21 – 21st day of the 3rd Month. Due to the extra chromosome certain growth and learning delays occur, along with some or no facial characteristics, of course varying for each individual. In 1965, the name that was previously used to describe the condition was changed to the last name of the doctor, Dr John Langdon Down, who initially identified the condition (around 1862) to a group of people due to their similar facial/physical characteristics, not because it was thought to be a condition to look “Down” on. It’s a condition that needed a name, a label to describe, to help people understand & compartmentalize, just like the words disabled, special needs, typical, normal, and all the other labels used to describe something or someone. Since learning about Chloe’s condition, I definitely see words differently. Actually I see a lot of things differently and realize I do not like labels, since to me they seem to set limits, which I see no limits to what Chloe can or will be able to do.
Parents/Advocates, Family/Friends, Educators, and Medical Professionals, have pushed to educate on how individuals with DS are just like everyone else, more similar than they are different, how early intervention is the key and so extremely important. They are individuals who deserve all the opportunities and respect that everyone in this big world deserves. They are individuals who can feel all emotions, dream, inspire, learn, teach, basically do about anything they set their mind on (just like everyone else) with the love and support of others and also by themselves. With this said, there is a lot more work that needs to be done to educate society about DS and what it entails. I am learning every day.
We are so grateful for the excellent SWA medical benefits which has helped with our out of pocket costs to cover Chloe’s care; from her extensive NICU stay after she was born to the few surgeries/procedures she has already endured and especially with all the different types of therapies she has been receiving since she came home from the hospital. The therapies have helped her stay on track with her growth and development and has helped my husband and myself with keeping her on track as well.
My Chloe, as mentioned before is Amazing. I tell her every day- You are AMAZING, You are INCREDIBLE, You are REMARKABLE, You are WONDERFUL, You are BEAUTIFUL, You are Sooo SMART!! She is truly all of these adjectives and more. She is even starting to mimic what I am saying when I say this to her, which is so adorable. She is my second purpose in life. My son Christian, who is 24, was my first purpose. Since he is a 2017 RTVF UNT Grad, maybe we will celebrate Camera day, which is June 29. Oh, and he is pretty AMAZING too. I love them both so very much and I am proud to be their mom!!
There are only a few Coworkers that I have verbally shared about Chloe having T21, the reason is I focus on Chloe, not the extra chromosome, and I feel this is the way it should be. Because of this, I contemplated on whether I should send or not send this email since it is about someone I love dearly and someone I am super protective of, plus being vulnerable with people outside my family is not my forte or more importantly putting my little girl in an unknowing vulnerable position gave me hesitation. I understand some people are not always nice, not open/willing to learn, and may be misinformed. Then I thought, but how am I supposed to help her now and her future, if I do not do my part to spread the word. So by way of this email, I am wanting/hoping to help change mindsets, some or hopefully all, and share the little bit of knowledge I have so far come to discover with my SWA Family and whoever else is willing to learn (discovery can be a bit overwhelming, but thankfully I have a Rock of a husband who keeps me grounded), all with the goal of helping my Chloe and other individuals who so happen to have an extra chromosome, to be embraced and appreciated for who they are and what they can offer, not for the condition they have.
I have a lot of hopes, dreams, and expectations for Chloe, and I know she is going to do great things, just like she has been doing since the day she was born. I also have a lot of hope and pray for a more kinder world, a more informed world, a world that sees the similarities in each other instead of the differences.
So in honor of World Down Syndrome Day, March 21, as mentioned above, the common thing to do is to wear fun socks, crazy socks, colorful socks. Our family plans to wear some. I hope you all will too. If you like, send me pictures of you rocking your socks, via email or by text. Check out the informative links below. Thank you!!
Here are a few entertaining and enlightening videos to view:
I found this video of kids asking 2018 Special Olympics USA Games Ambassador, Devon Adelman questions about herself. https://www.youtube.com/watch?v=zTE4OHpC2EU
This following link is an informative website about DS-https://www.ndss.org/
Thank you for reading and Rock your Socks on March 21!!
Chloe also says “Thank you!!”
Peace, Love, & Happiness!!