Thursday, March 21, 2013

World Down Syndrome Day

Today is World Down Syndrome Day. I know, I know, there seems to be a “Day” for everything now. But this one is of special meaning to me because, as you all know, my firstborn, my Megan, has Down syndrome. She recently turned 25.

 Down syndrome, in case you don’t know, is a chromosomal anomaly, an aberration, in which there are 3 of the 21st chromosomes, or part of a third,  present in the cells of the baby; instead of each cell having 46 chromosomes, they have 47. Hence the other name for Down syndrome, Trisomy 21. 

1 1/2 years old
I won’t get into the three different types of Down syndrome (I‘ll refer to it as DS for ease here), as I’m already getting technical enough here. ;) But I will tell you that it occurs during the first cell divisions when an egg is fertilized. And because of the extra genetic material, it affects the development of the baby physically and mentally. 

There are typical characteristics of Down syndrome that most children have, but like anyone else, each baby who has it is unique and may have all, most, or even just a few of the features. Almost always, you can tell a child with DS when you see him or her, usually by the almond shaped eyes and flat nasal bridge. Heck, Megan herself recognizes other people with it all the time. 

2 1/2 years old
One thing that I would like to clear up is the frequent misconception that someone can have DS “mildly“, or “badly.” There is no such thing; you either have Down syndrome, or you do not. It’s like pregnancy; you can’t be a little bit pregnant. You’re either pregnant or you're not. What you can have in a quantitative form, is the mental retardation that having Trisomy 21 almost always causes. The degree of mental retardation can run the gamut from mild to severe; IQs can be low to average to above average. DS is one of the most frequent causes of mental retardation, but the degree to which a person has it (mental retardation) is individual. 

Caitlin 8? Megan 11?
Here is a little Down syndrome etiquette, so to speak: 

It’s okay to look, but it’s not okay to stare. 

It’s okay to let children ask why a person with DS looks different. I always think of these situations as opportunities to educate. 

If you are talking about someone who has Down syndrome, do not say things like, “ He’s a Down’s.” or “My neighbor’s daughter has a Down’s.” Our children are NOT “a Down’s.” They are children who have Down syndrome. Would you talk about a person who has cerebral palsy and say, “He’s a palsy?” No. Our children or family members who have Down syndrome are people first, and they just happen to have Down syndrome, second.

Me, Megan 10, Caitlin 7
Having DS does not define who they are. It’s a big part of who they are, and it certainly impacts their lives. But that’s the point; it’s a part of who they are. DS is a part of who my daughter Megan is, just like loving babies is a part of who she is, or not liking my fried chicken livers is part of who she is. It’s not her entire being. I have Tourette’s syndrome, but that isn’t all of me; I am so much more. Megan has Down syndrome, but she is so much more.

Playing with her people.
Megan is sweet and kind. She loves to make things for people, like crafts or colored pictures. She loves people and is friendly as can be; she’s never met someone who is not a friend. ;) Megan loves God and has an amazing ability to remember people in prayer and what their needs are when she beseeches the Lord. 

She loves cooking with me, loves helping me take care of our home, and most people would be amazed at what she is able to do in that regard. 

Megan loves to color and paint. She loves to do crafts, any crafts! And when she does, she always wants to give them away as presents for people. 

Megan put a mobcap
on Pepper Kitty!
Megan loves to play games, and she loves to play cards, as we all know! (see blog post House of Cards ) She loves her American Girl doll and she loves her baby dolls. Most of all she loves her Fisher Price Loving Family dollhouse people. She plays with them everyday, and has at least forty, all of whom she has named. 

Megan has a great sense of humor, and when she’s not deliberately making a funny, she’s oh so innocently sending us into fits of laughter. Like the time I made baked chicken leg quarters for supper and a few minutes after I had given her plate to her, she brought it to Phil, saying, “Somehow this leg and thigh are stuck together.” We just about wet ourselves laughing about that! And he cut the leg and thigh apart for her. 

In one of her homeschool group
plays: The Secret Garden.
There is so much more to Megan that I could tell you, but it would be enough to fill a book and then I’d have to charge you for it to cover the costs. ;) Suffice it to say for now, she is just such a character, a delight to have as my daughter, and a blessing in our lives. 

When she was born and I was soon told that she has Down syndrome, I loved her even more. Having Down syndrome isn’t a tragedy; it just changes things somewhat. 

I always said that raising Megan was like taking the scenic route in life. It’s definitely slower, but that allows us to see and experience many things that we otherwise wouldn’t had she been an average child.

Megan set to exercise with the
Wii. Is this regulation uniform? ;)

I’m so glad I have Megan. I’m glad there is a World Down Syndrome Day, so we can help others to know and learn about it. We can help people understand that these are people first. Their individualism, their likes and dislikes, their strengths and weaknesses, their talents and idiosyncrasies, make up who they each are, the wonderful people they each are. And *that* is something to celebrate. 

I love you Megan Heather!


  1. Valerie, I love this! Megan is a sweet woman and I love her sense of humor. I believe God blesses some lucky people with loves like Megan and you were blessed! Thank you for sharing! I have a question for you, I have always found that people with DS seem to be particularly affectionate and loving. Is this a characteristic of DS or have I just met the most lovable DS people out there? Although I have never met Megan, it is clear from what you write about her that she is sweet and kind as well.

    1. Thank you, Holly. :) Yes, that would be a characteristic of people with Down syndrome. Not to say they don't have their days when they get upset about something. We all do. ;) But yes, Megan and any other child or adult I've ever known have always been very affectionate and loved to give and get hugs, and as their parents, it's sometimes hard to teach them the right times for hugs. Like, you know, we don't hug strangers, lol. A handshake is better. That kind of thing. ;)

  2. Valerie,
    This is Caoimhe's mom. Thanks for sharing your blog with me. I have worked with people with disabilities all my life. My older brother has disabilities himself which is what led me into the field. I always thought that since I had dedicated my life to this field that I would be immune to having children with disabilities--it couldn't happen to me. How wrong I was and how wrong I was to even want that. Caoimhe is my absolute Joy as it seems that Megan is yours. I appreciate your likes and comments on her facebook page--it serves as my support group.

    1. Thanks. :) I can see how much you love Caiomhe too! She's so darling. I love seeing the pics especially and hearing about her life. I also had worked with people with disabilities since I was 11, volunteering for years at a state institution for the mentally retarded, and then working there in direct care until 3 weeks before Megan was born. In some ways, I feel that God was preparing me my whole life to be Megan's mom. I can't imagine Megan not having Down syndrome; it's an integral part of who she is. But just a part. :)