Okay. Here goes. This is a post which has been swirling around in my head for the longest time. And it’s also the post I know I’m gonna get a whole bunch of flack over.
So last year I was in Eastern Europe adopting my two little darlings. It was by far one of the hardest things I have ever had to do in my life. I adopted the girls as a “single” mom (a loophole, since Anthony did not meet the requirements for that country). I traveled alone and stayed in the country for many weeks finalizing the adoption. It was lonely. I have never been so thankful for Skype. My family on the other side of the world kept me company on many an afternoon. And then there were the constant little issues which kept arising. At one point the judge felt that as a “single” person I already had enough children and how could I possibly handle two more with special needs? Dude…..I HAVE A HUSBAND, okay?
Hands down, the hardest part for me in those long weeks was spending hours upon hours at my daughter’s orphanage. Day in and day out I visited them. It was springtime and the other kids were starting to play outdoors more and more as time dragged on. Oh, to see their sweet little faces! One precious ten-year-old girl totally captured my heart. If I could have, I would have added her to the adoption. The judge would never have approved, though. To this day I still think of that sweet little girl. She found me everywhere I went. She would laugh as I greeted her in a strange language. I remember her beautiful huge blue eyes looking at me and looking at my girls, and I knew she wondered if she would ever be so fortunate. It literally broke my heart.
And then there were the other children. The ones I knew I would someday soon have to turn my back on and walk away from. Oh, gosh! It’s an awful feeling when you know there is nothing you can do to save them all. Heartbreaking.
So I sat in that dingy apartment day after day pouring out my heart in blog posts. A couple of times Anthony did too. We were first time parents to children with Down syndrome–we hardly had a clue what it was all about. We were figuring things out as we went along.
It was at that time that I started receiving comments and e-mails. Whenever Anthony or I made a simple mistake in our writing, boy, did we hear about it! The comments went like this…
“Please refrain from referring to your children as your ‘Down syndrome daughters.’ Always remember that they are your daughters first, and then they have Down syndrome. They are your daughters who happen to have Down syndrome.”
Huh? What the heck?! We had absolutely no idea that there was a politically correct way to refer to our daughters. I sat there reading countless reprimands with tears streaming down my face. Not because I was being chastised—I can totally handle that—but simply because it seemed so arbitrary, so totally insignificant. When my heart was being ripped out from all that I was seeing and witnessing. When my daughter was being left with marks and sores on her face and there was absolutely nothing I could do about it. When Hailee could hardly even sit up straight due to high doses of an adult anti-psychotic drug to make her sleep all day long. When my lovie was so completely out of it and nothing but a limp ragdoll on most days. And when there were hundreds of others just like her, suffering every day…and I had to leave them all behind…knowing their fate.
And people were offended that I called her my Down syndrome daughter.
And so it began. I cannot even tell you how many times since then I have received comments or e-mails (some of them not so very nice) bringing correction when we just happen to put the word “daughters” after “Down syndrome.”
Lord forbid I ever do that!
Heavens, even when my friend wrote a guest post here (and even I failed to see that she had made the dreaded mistake), did I get a note (or ten) telling me to correct my friend!
I know that this stuff is clearly very important to some people. And to some degree I do agree. Our children are people first. See…I get it. People first. But what I don’t get is the hoopla that is being made over it. Why has this whole thing become such an issue? Honestly, I don’t get my knickers in a knot when 90% of people with whom we come into contact say, “I once knew a Down syndrome boy,” or “Down syndrome children are so adorable!” It’s just a big whatever.
I know with all my heart that people mean well. They have no idea about the whole people-first thing. Goodness gracious…..just a short while ago I didn’t even know either–and I still make the same mistake myself every now and then. What I don’t feel is important is the need to bring correction and constantly educate my readers and people on the street that the person should always come before the special need.
You know why? Because in the bigger picture it just does not matter which way the words go. Seriously. I am NOT offended when people get it wrong. I cannot live my life with my radar in constant high alert–waiting for someone to use the wrong terminology so that I can do my duty and bring a correction. There are way too many things in this life which are way more important. Those are the things that we need to be creating an awareness of. I think we spend way too much time focusing on the things which are so trivial and petty–meaningless, really.
What is more important to me is that the world knows that I love my children simply by my actions and my heart. I want everyone who meets Hailee and Harper to know that they are loved just the way they are, for who they are. Honestly, I think that by constantly bringing correction to people who are not PC in this area that we are actually making things worse when it comes to creating an atmosphere of acceptance. Unless and until the general public is educated on this type of speech, we need to understand that they might be turned off by our correcting them! I don’t want that! I don’t want the world to feel like they have to step on eggshells and be cautious of every word they say around our girls. I don’t want people to feel that they might just say something that offends me. That is horrible. Yet sadly, as I talk to people and read stories, I think many people are doing just that.
I have read Angie Smith’s blog for some time now. I don’t know her personally, but I think she is so sweet, humble, and just a wonderful woman of a mighty God. Recently Angie journaled a special encounter she had with her neighbor–a young man who has Down syndrome. As I read her lovely post I had this little feeling that someone would take her words the wrong way. Lo and behold, as I read through the comments, there it was. A mom who has a child with DS questioning Angie’s motives and the heart behind her post. Oh my word….seriously? All she did was share her heart and it was a beautiful post about a young man who clearly had a profound impact on her life. Why in the world her motives should be questioned is seriously beyond me.
I don’t get this stuff. I see it happening all the time and quite frankly, I think it is just ridiculous. On the one hand we, as parents who have kids with special needs, long for our children to be embraced, accepted, and treated the same as every other child. Why then are we slapping a bunch of rules and regulations on top of it? Why are we so ready to pounce on any person who means well yet doesn’t quite know the right or wrong terminology? Why are we so quick to question people’s motives and hearts?
I’m sorry, and I know this post is going to offend many people (because we live in a society where offense is alive and well), but I just don’t get this stuff. I don’t.
Anthony and I give people the benefit of the doubt. We extend them much grace in this area. Yes, we even extend the dear old 85-year-old woman whom we met in the park an enormous amount of grace when she completely innocently mentioned the “R” word in a conversation. She just doesn’t know! That’s the only word her generation learned when it comes to disability. You know what mattered the most to us? She stopped, she took time to love on Hailee and Harper, she savored in their sweetness, and she made them feel special. Sure, she may not have got all the words right and said all the “proper” things, but dang it, she did not try to avoid my children or look the other way when she saw them coming toward her (like many do). That means more to me than anything. God saw her heart–and so did we.
Grace, grace, grace!
Most people whom we encounter in real life and the majority of people who read here are kind, respectful, caring, and all-embracing. And yes, many, many of them are not very PC. They’re just like me. They get it wrong–they get the words the wrong way around. So be it. I don’t care, and I don’t think my daughters will either, quite honestly. The only thing that matters to us is that they are loved, treasured and cherished…just the way they are, for who they are. Period.
Oh, and by the way, you will never hear me say that my daughters just “happen to have Down syndrome” either. I don’t believe that God just “happens” to give someone anything, as if it is by mistake. My God never makes mistakes! I believe that every child is fearfully and wonderfully made just the way they are. Period.
There you have it.