Today is 3/21 - World Down Syndrome Day - a day to celebrate all of our wonderfully extraordinary loved ones who were blessed with an extra chromosome. It's also about spreading awareness, and breaking down stereotypes.
Celebrating my little gift of Princess #1, has been the easy part ... it's the spreading awareness that I have struggled with.
I have been very aware of Down Syndrome since as long as I can remember. I had an uncle with Downs who I loved very dearly growing up. I remember being about 7 years old and some boys in the neighborhood called him that horrible "r" word, and I chased them threatening to kick their butts. I learned very early on that the "r" word was a horrible word and a huge insult, and it amazes me how many people still don't understand how degrading that word is. And that brings me to the "awareness" part - people just aren't aware of Downs, and what it truly is.
I want people to know that children with Down Syndrome are not monsters, nor are they ignorantly & blissfully happy all the time, nor are they dumb.
My little Princess is just like everyone else's toddler, it just takes a little longer to teach her body how to move in ways that come naturally for others. She acts just like other 2 year olds - she is picky about her food (throws food that she previously had no problem eating), she is cranky when she's tired, she is happy to get a treat of icecream for dessert, she is excited when she learns something new, she is imaginative and loves to feed us soup she just made in her soup pot with plastic food, she is tired after a long day on the beach, and she loves shopping and the attention she gets from everyone in the store.
Sound like a normal toddler, right?
She just needs a little extra help to figure out how to move her legs to walk and keep her balance at the same time, but I know she is one of the fastest crawlers I have ever seen. And she needs a little extra help to learn how to tell me what she wants, but she can certainly sign very adamantly that she wants to eat, drink, go to sleep, or have her favorite snack - fish ... all of the things that seem important to a toddler!
Now with all of this spouting off and praising of my daughter's skills, I have to admit that it has not always been as easy I am making it sound.
Two years ago when we received confirmation of her positive diagnosis we went through the whole process of getting to a point of acceptance. We have loved her to pieces since day 1, and nothing would ever change that, but we had to come to terms with the reality of her future and ours, (which I don't think we still have fully done 100%) and the struggles that were ahead for all of us. As part of our process, we did not make "announcements" of her diagnosis to everyone because we just didn't want the pity looks. We also were not armed at the time with all of the wonderful info we have now to explain it all to anyone who wasn't all that familiar with Down Syndrome.
So now, here we are 2 years later, and have loved ones who do not know about her diagnosis, unless they have figured it out on their own already. I know the fault lies on us (hubby and me) for not "announcing" it, but it would have been so much easier to have shared back then if there was more understanding and acceptance of Down Syndrome in our society in general.
It days like today - World Down Syndrome Day - that are so important to future parents of children with Down Syndrome, and will hopefully make it easier for them to make the big announcement ... now how can we make this a monthly awareness holiday to really get the awareness and acceptance out there?
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