Yesterday I read a very honest and insightful blog post about one man's encounter with a girl who has Down syndrome. It was called Today I learned Something About Down Syndrome.
Here is what I read, (and I am using this with the author's permission)...
I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.
My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").
Lily, in all honesty, when I read those first two paragraphs...I cringed a bit.
Before I had you, I never thought twice about saying "Down syndrome child" or "Downs baby". Now I find myself a little defensive when I hear or read those words..I never really "got" people-first language until I had you. I am not a huge fan of political correctness- I think if we continue to ban certain words, people will just find new distasteful words to replace them. Changing words isn't as effective as changing hearts. Having said that- words do make me, as a parent, feel a certain way. Hearing someone refer to you as "a Down syndrome child" honestly does- right or wrong- make me feel like people think of you as less than human. As in- there are baby girls, and baby boys...and then there are "Downs babies." Like you are in a category all by yourself, somehow...sub-human.
When in reality, you are a beautiful, healthy, and adored baby girl..who happens to have Down syndrome. Which is why I changed the way I say things after I had you- not because I am such a big fan of political correctness, but because of how I personally feel when I read or hear those words. I would not say "so-and-so is a cleft-palate child"...he is a child who has a cleft palate. Just as you are not a Down syndrome baby. You are a baby... who has Down syndrome.
I continued reading that article yesterday, because I really did want to remember what it was like to be someone who was not well aquainted with Down syndrome. Because it wasn't that long ago that I was just as unfamiliar with what an extra chromosome means in real life...
So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions.)
And I realized that much of my defensiveness of you, Lily, and your extra chromosome, is because I truly don't want people to see you as afflicted with anything. And while I really do believe that children with Down syndrome are "more alike than different"...in reality there are a host of issues, physical and mental and even societal, that set you apart.
The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.
So I was sitting there working on a quote for a customer, when my fear became a reality. The relative quiet of the establishment was broken with the words, "So how are you doing today?" I glanced up to see the beaming young woman looking right at me. With a small amount of anxiety I replied, "I'm doing great. How are you?"
In reality, I just can't get around the fact that people might be uncomfortable around you some day. I can do my very best to shield you from that, and hide the hurt that comes, like an arrow to my heart- when I see the pity in someone's eyes who recognizes that you have Down syndrome. I can pretend not to notice when someone asks how you're doing, with a hint of pity in their voice...when everything in me wants to yell, "Lily is fine! She's happy and wonderful and a blessing and we love her and really- she's not a victim!"
I went on to read...
It seems impossible but her smile got even bigger. "I'm great too but thank God it's Friday." With that she waved and walked off to continue dusting the Tazo Tea display.
"Thank God it's Friday?" Did she really just say "Thank God it's Friday?" Does that mean that there's a discernible difference between this day and any other day in her life? That perhaps a Saturday spent with family or friends, or by herself, is an appealing alternative to working her shift at Starbucks?
Does this mean that she doesn't just meander her way through the day oblivious to what's going on around her? She has good days and bad days... not just "days?"
I am beyond guilty of not understanding the nuances of life that a person with Down Syndrome experiences. It never occurred to me that she would have a thought like "Thank God it's Friday." I assumed that every day was the same for her and others with Down Syndrome. In my ignorant mind they seem blissfully disconnected from the challenges of day-to-day life.
I realized at that moment that I know nothing about Down Syndrome and I let my fear and assumptions dictate how I would interact with people like her.
She walked back to me, carrying a tray of Dixie Cups. This time I noticed her name tag: Stephanie.
"Would you like to try a Caramel Apple Spice?"
"Sure." She stood, waiting for me to taste the drink. I did. I didn't like it.
"How is it," she asked?
Up until about five minutes ago I would have avoided telling her the truth, fearful that I might hurt her feelings or confuse her.
"Actually Stephanie, it's too sweet for me."
"Yeah, too sweet. I don't like them either." She strolled over to the next customer. "Would you like to try a Caramel Apple Spice?" She points at me. "He thinks they're too sweet."
Stephanie walked back to me with a look of slight embarrassment. "My name isn't Stephanie. It's Amber. I left my apron home and had to borrow Stephanie's."
I'm glad that I met Amber. Maybe now I will ignore preconceived ideas that are based on nothing other than vague, uninformed impressions, and realize that the Ambers of the world, just like me, can't wait until the weekend arrives.
Or maybe I'll just continue to meander through the day, oblivious to what's going on around me. I have a lot more practice doing that.
So today I learned that we have a long way to go as a society. We've come so far- it wasn't too long ago that moms were placing their children with Down syndrome in institutions, fully believing that they were doing what was best. But we still have a long way to go, as far as changing perceptions about our children...because honestly, I could very easily have been that person in a Starbucks a little over a year ago.
And even though I knew that termination was never an option for me, when we were told during my pregnancy about the possibility of you having Down syndrome- I still had to come to grips with the uncomfortableness of it all.
Yet all it took, to shake those preconceived notions of what it meant to have a baby born with Down syndrome...was you.
This morning I looked at my feedjit to see who was coming to visit you. As always, there are visitors from all over the United States, and some from around the world as well. And as always there were words that caught my eye....words that revealed one fearful mama's heart- and I'm assuming she just received a prenatal diagnosis of Down syndrome..
Iceland arrived from google.com on "A Perfect Lily" .. by searching for Which doctor must i go to to have abortion?.
Although those words pained me, they also gave me hope...because while that mama was searching for an end to what she perceived as suffering...she stumbled across you- a perfect Lily.
And while I don't know if that encounter- with your beautiful face and the words of our dear friend Courtney underneath ...
Our children arrived exactly as they were designed. They are a direct and unmistakable gift from God. He has given us children capable of copious amounts of unconditional love because we haven't been open to receiving the more indirect ways He's been showering it on us for the previous years of our lives.
...was enough to change her mind- I pray it was.
Because I do know it made an impact on this mama...
I just wanted to send you a quick e-mail letting you know that I used the Courtney Heigele quote you have on the top of your blog in a comment I wrote on a Norwegian blog. The blog is written by a young mom of a gorgeous little boy with Ds, and the post I had to reply to was about the debate currently going on in Norway about ultrasound in week 12 of the pregnancy. Every pregnant woman in Norway gets called in for a free ultrasound in week 18 to check that the baby is healthy in the womb. The debate now is that it is possible to detect illness earlier in the pregnancy so that it is possible to have a medical abortion before the pregnancy progresses further. This is a sensitive subject, and there are public voices that are negative and not well thought through. The lack of compassion and empathy upsets and scares me, and that was why I felt compelled to comment in support of diversity in the society and I rememebered the beautiful quote I had read on your blog and included it in my comment.
I'm sorry if it seems weird to receive an e-mail from a woman in Norway, but I just felt like I had to send you an e-mail letting you know that your blog is read up here too, and that I'm thankful for the way that you make a difference with your words and kind heart.
Kjersti Storrø-Trana (a 30 year old mom of a soon-to-be two year old boy with "only" 46 chromosomes who has had her heart and eyes opened thanks to the www!)
as well as this mama from Vancouver, British Columbia...
I hope my email reaches you.
I stumbled upon your blog by reading a post that Roger Fallihee wrote. A friend had posted it on her Facebook page and somehow or another, I ended up reading your blog. I honestly thank God and the stars and the universe that I found your letter to Lily.
I have a daughter, who is 9 months and she was born with mosaic down syndrome.
Your letter touched me so deeply because it is EXACTLY how I have been feeling and EXACTLY how my husband is with our dear Kaitlyn. She is Daddy's girl. She spent nearly 6 weeks in the NICU at our Children's Hospital. I won't go into all the details, but it was hard and I know you understand. It's just nice to come across other Moms who "get it" and don't pile on the "oh, I'm sure everything will be fine" story. Kaitlyn is teaching me soooo many magical things and I adore her, but there are still days that I grieve or feel sad; and not everyone understands those emotions.
I just wanted you to know that I'm another Mom who is so very thankful for your honesty. God has worked his magic again... just when I needed it most.
And so, dearest Lily, today I learned something about Down syndrome as well...
I learned that it doesn't always take a lot to change how people view a person with Down syndrome. It doesn't necessarily take a lot of money, or education or effort. Sometimes - for the open hearted- all it takes is one simple encounter.
Whether that's with a diligent employee named Amber, who has a smile that lights up a room, or with a beautiful and perfect Lily...
We're going to change the world, one heart at a time.