Down syndrome, or Trisomy 21, is a genetic disorder caused by a third copy of the 21st chromosome. People with Down syndrome may have physical delays, characteristic facial features and mild or moderate intellectual disabilities.
Having a daughter with Down syndrome opened up a whole new world for myself and our family. My youngest of three daughters, AC, was diagnosed a week after she was born. There was a lot of fear that came with it.
Fear of the unknown, lack of preparation and education.
The social worker at the hospital came in to talk to my husband and I. I just remember crying and feeling so unsure of what the future held. Until she told me this, “She is going to love you so much”. That was it. Something simple and obvious, but from that moment I knew. I knew I had to be her voice, her advocate and her protector. My daughter needed me and it wasn’t fair to her for me to go on with this pity party I was throwing myself. So I let myself have a good cry, really let myself feel the emotions and then wiped my tears and dove head first into research.
I started joining Facebook groups to submerge myself in everything Down Syndrome. The first thing I learned is that people with Down syndrome are more alike than different from their typical peers. If I were to wish for one thing for people to know, it would be that.
My daughter just turned 3, and while she may have a few delays like being unable to walk yet, she is very much a typical Trolls/Moana/Sing loving threenager!
Before I had AC, I wasn’t aware that a World Down syndrome day existed! Now that I do, it is my mission to spread as much awareness about it as I can. World Down syndrome day takes place every year on March 21st. We celebrate those with Down Syndrome on this day because it represents the triplication of the 21st chromosome (3.21) which causes Down syndrome. There is no wrong or right way to celebrate, but here are a few ways that you can participate!
- Rock your Socks: You may notice people wearing fun, printed, mismatched socks. Not only is it fun and silly, but it is also a great conversation starter! Participating in rock your socks is a way to celebrate diversity. I will definitely be wearing my crazy socks and am prepared to spew my T21 knowledge on anyone who asks about it.
- Perform a Random Act of Kindness: This one is a simple way to do something nice for another person without any expectation. It could be something as simple as holding a door open for a person with their hands full or babysitting a friend’s child for a few hours to let them have some “me time”. Bonus: Leave a card with a fun fact about Down Syndrome. Double bonus: Do 21 acts of kindness!
- Get “The Lucky Few Tattoo”: Ok, so this one might be a bit of a stretch. All over the world parents, family, and friends are getting inked with 3 arrows to celebrate their loved one rocking the 21st chromosome. It was also designed to celebrate the camaraderie between these families. The designer of the tattoo is Mica May, a mom of a child with Down syndrome. What is the meaning behind the arrows? “The three arrows symbolize the three 21st chromosomes and how we rise up and move forward. We fly the highest after we have been pulled back and stretched, sometimes even more we think we can bear.”
This year, we plan to celebrate with our local San Diego Down Syndrome group and their families. The love and support I have received from being a part of this community has been wonderful. This group of parents has given me a place to celebrate the highs and seek advice for the lows.
A common saying we have is, “You’ve got this, and we’ve got you!” It is nice to have such a strong support system from people who are walking the same journey. Of course I love all of my mom friends, but there’s a special bit of magic that lives within our community and it stems from one extra chromosome. It is truly a blessing to be raising a little one with Down syndrome. I am thankful for having my eyes opened to a whole new world. It may have taken awhile to see it, but I am definitely one of the lucky few.
However you choose to celebrate WDSD, I hope it is spent with friends, family and lots of love!
