March 21st is World Down syndrome day. This is a day that I did not know existed until I had a child with Down syndrome. How amazing is it that they set aside a day for these perfect children?! Kris and I have been so blessed to have a child with Down syndrome and also to have one without Down syndrome. We are doing our best at raising awareness and are so very proud of our sweet girl and her extra chromosome!
Just a little information regarding why March 21st is World Down syndrome day... Down syndrome or Trisomy 21, which is what it is called, not "Down's syndrome" or "Down's," occurs when a person has three copies of the 21st chromosome. Believe it or not, 80% of children with Down syndrome are born to women under the age of 35 because we are the ones having all the babies. So, age doesn't have a lot to do with it. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all; for instance, Chandler does not have the single deep crease across her palm and she actually has pretty good muscle tone. The life expectancy has increased significantly from the age of 25 to the age of 60! Children with Down syndrome usually have some type of delays, but that is just what they have, delays, which means that they will get the concept eventually, it just might take a little bit longer than others. So, instead of asking us if our children have rolled over or if they have walked, ask us about what they can already do. Our children work hard for their accomplishments and it is frustrating to us to be reminded of they can't do at that time. We, as parents, beat ourselves up, because we take it personal when things don't go smoothly or at the "appropriate" time. Most of the time, yes, people with Down syndrome are happy; however, they experience frustrations just like me and you and at six months old, we have seen this temperament in Chandler! People with Down syndrome can also have different types of medical conditions; such as, congenital heart defects, hearing and vision problems, and thyroid conditions. Most of these conditions are now treatable, so people with Down syndrome are able to lead healthy lives. As of now, we are only aware of Chandler's congenital heart defect, which is fixed halleluiah, praise the Lord!!! She doesn't seem to have any trouble with her hearing or vision right now, and her thyroid will be checked soon.
Some of this information came from the National Down syndrome society website at www.ndss.org. The other information is from my own experience at being a mother of a child with Down syndrome for only six short months. Please know that these thoughts and feelings may not be true for all parents and that this is only from mine and Kris's perspectives. I am trying my best at promoting awareness and this is one of the ways I feel works best for me. I am by no means an expert on Down syndrome!! We are learning everyday and by teaching what we know and have experienced, we might can make a difference for all people who have Down syndrome!
Now, I have heard that confession is good for the soul, and I must confess that we aren't wearing our yellow and blue or our "3:21" t-shirts or even having a party tonight. But I can tell you what we are doing..we are loving our Chandler and all of our friends who are also genetically enhanced with the 21st chromosome! We have been blessed beyond measure that's for sure, but with "Princess Madeline's" birthday this weekend, this special day has slipped up on us. But I can assure you that next year there will be a blowout!!
I hope that everyone enjoys their World Down syndrome day and remembers to "keep calm, it's only an extra chromosome!!"
loving my unique child with Down syndrome and my unique child without Down syndrome,
Megan
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