World Down Syndrome Day is celebrated on the 21st day of the third month of the year to symbolize a third copy of the 21st chromosome in Down Syndrome. This year is especially exciting as is it the first year that the date is officially recognized by the United Nations! People all over the world will be joining together to create one global voice to celebrate, honor, and advocate for those with Down syndrome.
Editor’s Post: Local families will be celebrating this special day with their loved ones as they do everyday. As editor of GoodLiving magazine, I attend events and get to meet some of the most loving parents that ever were. (Actually, these kinds of parents were the inspiration for GoodLiving to begin with.) Part of our mission with GoodLiving is to celebrate parents and families who are unsung heroes in our neighborhoods. Parents who foster and adopt. Parents who are dedicated to the education and enrichment of their children, despite any circumstance. Parents who start non-profits or advocacy groups to stand up for a cause or a cure. Parents who volunteer. The list could go on, and that is fortunate because we are never ever without stories to tell.
I have a dear friend Alison who has a young son with Down’s Syndome. I met her in a small group at church and was constantly inspired and warmed by her candidness about having her special needs child. She stated that people often pitied her family for having this child, but the pity wasn’t necessary. With sincerity and steadfast strength she said she and her family are blessed daily by this little boy in countless ways. While many of her frustrations are from navigating a system that isn’t always parent-friendly, she wouldn’t change a thing about having this child.
This sentiment was echoed by another good friend, Becky, who has a teenage son with Down Syndome. Her eldest daughter recently commented how their family wouldn’t have the friends they have now if it weren’t for the support network they accumulated over the years of participating in special needs programs. Becky whole heartedly agreed. There have been challenges along the way, but those challenges developed strength and a value system for their whole family ~ not to mention to immense love and humor shared between them all.
Parents with similar stories are working on campaigns to raise awareness about the joy of living with a child who has Down Syndome. In the U.S. between 87% and 95% of all babies diagnosed with Down Syndome in the womb are aborted. That has begged the ethical question as to whether or not you could classify this as eugenics, and it has become a political discussion with recent presidential candidates like Sarah Palin and Rick Santorum.
But despite the highly charged feelings that surround the issue of abortion in general, families want pregnant moms to know that giving birth to and living with a child who has down syndome is a blessing. Their hope is that this decision will be weighed out with information from both sides of the issue.
Watch this incredible video and be moved by intense love:
Locally we have a supermom whose daughter with Down Syndome is about to turn 18. She has channeled her years of experiences, frustrations, accomplishments and energy into running the Pinellas County chapter of the volunteer organization called STAND, A Statewide Advocacy Network on Disabilities. Melissa Cox Tremblay is passionate about helping parents find the proper resources and getting them the IEPs they need. A parent who has a child with any kind of developmental, physical or learning disability needs to be a part of their Facebook page.
It was through Melissa that I became familiar with the website for Voices for Down Syndome. I recommend this to parents as an additional resource of support and information. www.voicesfordownsyndrome.com/
God bless all the families who love and support children with medical, physical and learning conditions. Their tireless passion and advocacy for their children is powerful stuff. Stuff that inspires other parents and the stuff that leads to positive perceptions and even policy change! And today on World Down Syndome Day, I say a special thank you to the Alison, Becky and Melissa for the work they do outside their families to bring about understanding and love.
Pamela Settle, Editor, GoodLiving magazine