When it comes to social media, I’m a little wishy-washy about what I like and what I don’t. I’ve technically been on Twitter for a couple years since I had my bake shop and felt like it might be fun for my business. Now I’m on as The Mango Memoirs, but I don’t do a whole lot. It’s just too much information for me. I am a fan of Facebook, though I’m spending less time on it than I used to, which is probably best. There is one social media app, though, that I’m absolutely sticking with. It’s Instagram.
Here they are! Photos from our weekend in the Dells! Ella’s current love of mermaids and water parks pretty much guaranteed we’d have an exciting time, but what really made it great was that we were there to meet up with lots of other families who are connected to the International Down Syndrome Coalition (IDSC).
Today is the day, friends! It’s a day that you can take action to end the use of the R Word. A few years ago, a small campaign was started, offering people the opportunity to take a pledge to remove the words retard or retarded from their vocabulary. I wrote about why using the R Word actually does matter last month and was amazed with the outpouring of support and personal stories of why you, the incredible readers of The Mango Memoirs, choose not to use the word. At the same time, I realized that there are many, many people who just aren’t aware yet of the impact and hurt the word can have. By joining in this campaign and spreading the word to end the word, we can stand up for and with those who are being labeled with this hurtful, outdated term and we can rid it from our language altogether.
Spread the Word to End the Word has a fantastic website dedicated to sharing the message and educating people on the use of the R Word. Their Why Pledge page has answers to questions about the history of the term as well as the effects of the word in identifying those with intellectual disabilities. Please take a moment to read through some of those to become more aware of the issue. When you’re ready to make the pledge to toss it from your vocabulary, click on the Pledge & Be Heard button at the top of any of the pages on their website to make your commitment.
Do it for this little guy and his friends, so that they might someday live in a world where the R Word doesn’t exist.
And when you do make your commitment, comment here! I would LOVE to hear about it! And from one mama who never, ever wants to hear the word, no matter what context it’s used in…THANK YOU!
A few days ago, an unsettling situation was brought to my attention. In 2012, Ann Coulter wrote a Tweet about the President during the State of the Union Address, in which she referred to him as a “retard.” Quite a bit of news coverage followed, including a beautifully written letter from John Franklin Stephens, a 30-year-old man who is a Special Olympics athlete and global messenger, and who also happens to have Down syndrome. In her response, Ann Coulter refused to acknowledge that her words had anything to do with those with a disability. Instead, she insisted that it merely means “loser.”
But it does not, Ms. Coulter. It doesn’t mean that at all.
I’ve always thought the R word was an ugly word, but on May 24, 2012, the day we met our beautiful Samuel, the word became so much more. When I hear the word in any context now, it immediately takes me out of the moment. My mind races to my little boy and I’m flooded with fear. I see a picture of my Samuel, with his incessant smile, being called the word behind his back by a group of kids in grade school because they don’t understand. I see him playing at the park where a group of moms whisper while watching him chase his sister. I feel the fear of not knowing exactly what our future holds and the challenges that my son will face because of his diagnosis.
On a regular day, these thoughts very rarely come to mind. I’ve handed them over to Jesus and know he is in control of our future. But in the moment that follows the utterance of the ugly R word, I am scared that I will not be able to protect him from those who just don’t understand.
When I hear friends continue to use the word, I tend to give them the benefit of the doubt since I know they’re usually talking about a frustrating situation or a misbehaving crock pot, not a person. But it feels the same to me. Maybe I would be acting as a stronger advocate for my son and for the others in this beautiful community if I stepped up and {gently} said something. I know that’s what I should do, and I think I’ll eventually learn how to do that. But honestly, right now with my sweet boy not even two years old, the term stings so sharply that I simply don’t have the words to respond.
So please, help spread the understanding that the R word is not what Ms Coulter insists. It does not mean “loser” or “idiot or “moron” as she stated in her response. It represents years and years of hurt to those who could not stand up for themselves. I am so very thankful to live in a time and place that is far more understanding and knowledgeable and welcoming to the incredible people with disabilities all around us. My Samuel has countless opportunities for his future. He will learn and love and play and grow just like every other child, though it may look just a little different at times. Society continues to learn, but we can help spread the message that the R word is no longer acceptable.
Gently mention it to your friends when the word pops up in conversation. Teach your children that it’s not an acceptable term. Instead, let’s learn to look beyond the label to recognize the person beneath. Because if I’ve learned anything in the last year and a half, it’s that there are so many incredible people around every corner.
Revision: I wrote this as an expression of where I am at this point in my journey. It is just that – my own journey. I am a mama doing the best I can with what I have been given at this moment. I’m sorry if you do not agree with what I have written here, but my intention cannot be completely expressed without personally knowing me. I would never write something to cause harm or anger. After disabling the comments section for a short time due to the harsh language of some responses, I am stepping out and allowing them again. Thank you so much for your support on this topic.
March 3, 2015: One year after writing this post, I can tell you that I now am much bolder about asking people not to use the R word. I simply cannot allow such a word to continue to be used after meeting countless incredible people in the last year with varying abilities. Please join me and so many others in eliminating this word from our vocabulary.
Take the pledge to support the end of the R-word by clicking here.
I don’t want to go through Down Syndrome Awareness Month without sharing a story that has beautifully touched us on our journey since Sam was born. The story was read to me after we met our little man, and I’ve never forgotten it. We’ve been given the opportunity a number of times in the last 16 months to visit families in the hospital who have just had a child born with Down syndrome, and Pete always reads this story with them. It really is beautiful.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
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About a year and a half before Sam was born, I was scrolling through Facebook and came across an adorable photo of a little girl in a tutu and clicked to read the caption. In that moment, I was directed to a beautiful blog. Enjoying the Small Things is written by Kelle Hampton, a mama in Southern Florida who, at the time I began reading, had two daughters. One was about four and the other was two. I was captivated by her photos and everything she was able to capture in them. Beautiful colors, artistic settings, unique angles. An abundance of life was depicted in those photos. One more thing drew me in, though; her younger daughter, Nella, had Down syndrome.
Fast forward to the night I met my baby boy. I had been following Kelle’s blog for more than a year because of the beauty in her photos and the depth and humor of her words. Clearly, God had directed me to her blog as a way to prepare my heart for what He had in store for me. As I held Samuel in his first few days, I was able to dream of all the incredible things we would do together. I’ll admit that before seeing Kelle’s blog, it was hard for me to imagine life with a child with special needs. I know that reading her blog opened me to the realization that life can be full and vibrant and adventurous, which is what I needed for the moment the path of our lives changed just a bit. I am so thankful that I stumbled upon her blog. In time, I hope to be an encouragement like she was for parents of children with special needs.
Kelle also released a book just before Sam was born called Bloom. I had considered buying it before his birth, but didn’t get a chance, so I ran right out for it while he was staying in the NICU. I read most of it while nursing or rocking my baby, sometimes in the middle of the night. I cried and I laughed, and sometimes I had to put it down because my heart just wasn’t ready to read more. But in the end, it was very good for my start in the community of Down syndrome. It was like having another mama nearby, gently telling me her story.
Disclosure: I was not compensated in any way for the content in the post. All opinions are my own.
When people ask how my life has changed since we met our little Samuel 16 months ago, I tend to get a bit teary. I don’t know how exactly to put words to the emotions I have for what we have experienced. There have certainly been ups and downs and a few unknowns. I wrote about some of the emotions tied to that in a post about learning to trust when Sam was just a couple months old. Many more months have passed, and we are still learning to trust every single day, but things feel smoother now. We’re more comfortable with the unkowns, and I have no doubt that Samuel is the one teaching us how to trust through those moments.
We don’t dismiss the things that make our Samuel a unique, beautiful little boy. He has Down syndrome. That is simply a part of who he is. But it’s not all he is, and that’s what we focus on each and every day. There was a time when I wondered if I would look into his eyes and not think, “My son has Down syndrome.” I don’t know when I reached that time, but it has happened. I now look into his big, bright, blue eyes and see so much potential. I see his joy. I see a boy who wants to learn and grow and experience the world as he is meant to experience it.
Who says we’re all supposed to experience the world a specific way, anyway? We’re each so incredibly unique. I’m excited to see how Sam gets to see the world. I want him to teach me how he experiences each moment. He’s already been doing that in so many ways. I’m learning to slow down, to not be so set on a standard timeline of achievement, and to enjoy the process of reaching goals. And then, when the goal is accomplished, to really celebrate. To share with everyone that we’ve accomplished something spectacular. Something that most of the world may see as ordinary, but to us, through the eyes of my Samuel, it is something truly amazing.
And who wouldn’t want to experience the world that way? I want to see beauty in simple things. I want to celebrate little moments rather than only making a big deal over the big stuff.
Recently, we’ve had a lot to celebrate. A few weeks ago, Sam started sitting on his own. He is such a strong boy, but his tummy muscles needed a little more practice with staying up. He gets so excited to sit up and play with toys now, especially when Ella is playing along with him. He is also waving with both hands and clapping. He loves to stand with a little assistance and is getting really good at holding onto objects to stand on his own. He works very hard at physical therapy each week and is doing so well with occupational therapy (his fine motor skills) that he only has to go every few weeks now instead of every week. Soon we’ll begin speech therapy, too.
Can I tell you the REALLY exciting thing?! He has said his first word! The greatest thing is what the actual word is. ELLA. Yes, Ella! The first time we heard it, she had just left the room where the two of them were playing. He yelled after her, which sounded like her name, but we weren’t sure until he said it a couple more times. Now he says it quite often. Earlier today, Pete got home with Ella after preschool and I said to Sam, “Ella’s home!” Right away, he yelled, “ELLA!” It’s adorable. I’m still trying to catch it on video. When I do, I’ll be sure to post it.
We’ve been blessed in a way we never imagined. That’s exactly why we are really celebrating Down Syndrome Awareness this month. If you’d like to learn more about Down syndrome, check out the National Down Syndrome Society resource page. Also, I’ll soon be posting links to other blogs and FAQ pages with lots of information on Down syndrome.
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I am currently working on a couple really big projects that I can’t wait to share with all of you! They both make me so giddy that I wish I could just tell you everything right now, but I don’t feel I would do them justice if I did that. One will be revealed very soon, so check back! The other will take a couple months, but it’s going to be BIG.
And no, for all you who are just so curious, neither project includes anything having to do with a baby. (That comment is mostly for you, Mom.)
I hope you’re enjoying the fall as much as we are!
rockin it two weeks ago
