Wednesday, October 20, 2010

Guest Blog About a Special Little Girl

Those of you who have been reading my blog for a while are aware that Marino goes to a daycare for medically fragile children. The kids who attend this daycare have a variety of medical issues: there are children with feeding tubes, with severe allergies, with heart problems...every child's story is different. Some of the children have developmental and physical challenges and others do not. One of the beautiful things about this age is that small children don't see differences - in themselves or in others. At Marino's daycare, everyone just is who they are, everyone is acknowledged and included by the other kids. It's hard to think the day that will come when some of these children feel that they are "different" in some way and that, with that acknowledgement, may come some painful feelings and likely a sense of being misunderstood.

October is Downs Syndrome Awareness Month. In honor of this, I asked Karen to write a guest blog about Downs Syndrome - how it impacts her life and what it means to her. Karen's precious daughter, Ariana, goes to daycare with Marino. She is actually the first child I met when we went to visit the center and I was in love with her immediately. Ariana is adorable and the sweetest little girl in the world. Marino and Ariana are in the "toddlers" room together, so I get to see her almost every day, along with her two amazing and involved parents. And, for the record, Karen is gorgeous and always so put together in the morning - I don't know how she does it! Karen has truly been blessed with Ariana, and Ariana has been blessed with amazing parents. I hope you gain some insight from Karen's post below.

Hello. October is Down Syndrome Awareness Month. I am honored that Sara has asked me to guest blog on her site to raise awareness on Down Syndrome from a mother's perspective. My daughter will turn three in November. The past few years have been really interesting. I probably could obtain a medical degree in absentia based on all of the reading materials I've breezed through since I learned that she has Down Syndrome. What does Down Syndrome mean? Why do people tend to look “down” (aka, sour) when they learn that my daughter has Down Syndrome (DS for the remainder of this post)?

The irony of it all, my daughter is anything but “down”. She is very upbeat. And therein lies the magical secret that no-one tells anyone. Those with DS are a true blessing, not just to the one who gave birth to the little one with the extra chromosome, but also to anyone they happen to meet. I can honestly say (and not just as a prideful mother) that my daughter truly brings a smile to anyone's face who crosses her path. Seriously, I have seen frowns go from sour to happy when they cross paths with her. And, I believe it is the extra chromosome.

I've mentioned the extra chromosome a couple of times. In case you are not aware, Down Syndrome (oops, DS) is a result of one having an extra copy of chromosome 21. A normal fertilized egg has 23 chromosomes. People like my daughter have an extra copy of #21 (also known as Trisomy 21). And while there are a variety of levels of those who “suffer” from Trisomy 21, there are many common features. In particular, the face. You've probably seen someone with DS. One common factor is that they tend to have a flat face with an upward slant to the eye and a short neck. Another common factor is that the extra chromosome tends to make them extra loving, extra kind and extra extra special (definitely a mother's bias right now).

My daughter has taught me patience. I have become a cliché. I take more time to smell the roses and appreciate all of God's creations. Things that I take for granted, as simple as the spoken word (aka, speech), makes me more aware of how difficult it can be for her. You see, the tricky thing about DS is that the person with DS can really understand everything you are saying. They just have a hard time communicating. I realize that is a broad generalization. Nevertheless, here's another way to view DS from the inside out → imagine yourself in a foreign country where you've studied the language prior to travel and you know enough to understand what people are telling you; however, when you try to put the words together, you know what you need to say but you have a really hard time trying to get the words out of your mouth in the correct format. On a smaller scale, that is a brief insight into what is happening with people with DS. And trust me, even at age two, I have seen this occur with my daughter. Does it bring me to tears? Not all the time. Does it make me wonder how others will treat her when she has to tackle the real world (and by real world I mean Kindergarten in the next couple of years)? Absolutely! Nevertheless, I know the care and attention that she is getting now through various therapies will prepare her for the moment when she transitions into a more inclusive environment.

I think during the month of October, as one raises awareness for DS, one just needs to realize that children and adults with DS don't consider themselves to be disabled. They are members, active members, in society just like you and me. And given a chance, they can accomplish their dreams and goals and surpass many expectations. If you want to learn more about Down Syndrome and hear more about my experiences with my daughter, please visit my blog. The site was created to raise awareness about DS with others. The concept is that we blog for 31 days (October) about Trisomy 21. I hope you take a moment to check it out and let me know you dropped by. Thanks again to Sara for allowing me this opportunity to share with you. All the best, Karen

Karen, thanks so much for sharing Ariana's story and raising awareness about Downs Syndrome.


  1. Karen, a great post. I have gained more insight into DS and how you, personally, relate to having a child with DS.

  2. Thank you, this is a wonderful post. I'm very excited because next week my boys start a playgroup with a little boy in our neighborhood who is a DS child. He's a great boy and I'm looking forward to lots of play dates.

  3. Wonderful post. It sounds like you guys are lucky to have one another! She is just precious.