Spread the Word.

There are two sides to the “being a parent to a child with Down Syndrome” coin.
There’s the side wherein you don’t want people to view your child as “the kid with Down Syndrome,” “the Down Syndrome kid,” or, worst of all, “the Down’s baby.”
And then there’s the side where you want to shout it from the rooftops, to normalize Down Syndrome, to make people ‘see the ability’ and know that Down Syndrome is common, it’s out there, it’s not scary, and that our kids are capable of anything.
I toe this line, and which side I’m on depends on the day.
Today, I’m shouting it from the rooftops.
Today, I’m letting everyone know. Because of one word. The R-word.
Yup, the R-word AGAIN.

Now, I’ll be 100% honest. When I was a teenager, my aunt worked with people with disabilities. She would tell me time and time again not to use the R-word. And I didn’t listen. Yeah, I tried. But it wasn’t important to me. She just told me it was offensive to people with disabilities, and I didn’t really get why.

Well, that damn word came up again today, and it won’t go away, and I feel the need to explain again why it’s offensive.

So, here’s what happened. I was in a professional setting, where I was a client, and I was talking to the person working there. She was asking me about Thatcher. I said he was growing up way too fast, and her response was, “I know! It’s retarded how fast time flies!” I stopped her right there. I told her that yes, time flies, and that is many things, but it is certainly not retarded. I told her that the R-word is a word that we no longer use in our household, because of my son, who has a disability. Her answer? “Oh right, he’s Down Syndrome.”

Actually, he is NOT Down Syndrome. But yes, he has Down Syndrome. Two totally different things. Down Syndrome does not define him. It’s not who he is. It’s a part of him, yes. But he’s Thatcher, thank you very much.

Fast forward my story, I posted about this professional to a group on social media, and while most people were also appalled at what had happened, one person told me I was being a hypocrite for being offended and for educating this professional. About a month ago, I had referred to Michelle Duggar as an idiot. Yup, a celebrity who willingly puts her life in the spotlight is apparently not allowed to receive criticism on a public forum. A celebrity whose claim to fame is spitting out J-named offspring, and petitioning against the rights of transgendered people. Let’s see. I’m standing up for people with disabilities, but that’s hypocritical because I hate homophobic celebrities? I can 100% see the logic here, can’t you?

Anyway, this got me all riled up, and let to yet another Facebook broo-ha-ha. A lot of friends of mine stood up for me. There are probably some people out there that were pretty angry with me. A lot of stupid things were said from all sides of the argument. And the point? Totally lost.

So what was the point? Why was I so upset by this situation? Because even when the R-word isn’t used to describe Thatcher, it’s demeaning him. Let me explain:
The word “retarded,” at the very root of things, means “slow” and “delayed.” It’s a medical term, albeit an antiquated one. It was used to describe people who were developmentally delayed. So if you were to call Thatcher retarded, and you were a doctor, you would be from the middle ages, perhaps, but you wouldn’t be wrong.
Here’s where it goes wrong. Nowadays, we use the word “retarded” to describe things that are stupid, or ridiculous. So for example, the professional I saw today used it to describe how ridiculously fast time is moving.
So, what’s the problem with that? Simple. You’re taking a word that describes my son, and you’re making it a bad thing. You’re making it something stupid, something ridiculous, something crazy. You’re making the word mean something else, something bad. So now that word that describes my son, that word is a bad thing. By association, my son’s delays are now a bad thing.

Do you get it yet? If not, I’ll use another example. Take the word “gay.” It’s used to describe someone who is homosexual. There’s nothing wrong with that, right? But you take that word, and you use it to describe things that are lame. Maybe you are homophobic. Maybe you’re not. The misuse of the word “gay” certainly started out with homophobes and spread from there. So you take the word “gay” and you use it to describe things you think are lame, and things you don’t like. You don’t like that movie? “That movie was SO gay!” …. see what you just did? You just took the word “gay” and made it something bad. By association, if a person is gay, they are now bad, too. You don’t have to call a person “gay” to make it offensive, you just have to use the word in an offensive context to basically insult every homosexual person on earth.

The R-word is the same. You’re taking a word that describes my son, and you’re making it bad, making it wrong. It might have started out as a slur by people hating on people with special needs, but even if you know or love someone with special needs, your hateful use of the R-word is them. That’s why we need to Spread the Word to End the Word. We need to stop using this word, period. You’re never using it “in a non-offensive way.” It’s always being hurtful, whether it’s intentional or not. Maybe you think I’m a hypocrite. Maybe you don’t. I don’t care. I just care that you think about your words before you speak, and you think about what those words mean and who they might hurt, intentional or not. I’m doing my best to, as well.

And if I correct you, or point out your use of the R-word? I’m not trying to offend you. I don’t judge you. I know it just slips out, because it used to slip out of my mouth, too. I’m just telling you because the more we can spread the word and educate people on why the word hurts, the faster we can eradicate it. The faster we can eradicate antiquated ideas on what kids like mine are, what they can do, and what defines them. The faster we can make people realize what people like Thatcher can do, rather than focusing on what they can’t.

That’s what side of the coin I will always be on. Thatcher’s side.

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Hopes & Dreams

The art of having a baby is a year-long endeavor.

You start out with the idea; “Can we really do this? Can we afford it? Will we make good parents? Is this the right time?” Once you decide that no time is the right time, but now is when you are ready anyway, you start planning. If you are like me, you start tracking even before you are ‘trying,’ then once you start trying you obsess a little bit. We were lucky to only take two months because I think my husband would have killed me had it taken longer!

Once you become pregnant, you get your “BFP” and it’s surreal. There is a tiny, tiny life inside you just waiting to grow and be nurtured and you can’t even comprehend it at times. I found out I was pregnant December 11, 2012. I remember sending a text to a friend “just to make sure” there really was a second line on that pee stick. We both screamed at each other excitedly on the phone. Could it be real? OMG! I was going to be a mother! I headed to the mall post haste and went to Hallmark, where I got a ‘Baby’s First Christmas’ ornament, wrapped it up, and gave it to my husband when he came home from work. He could hardly believe it was real, and we had tears of joy at the idea that our little family was going to be expanding, that we had a new life with us.

You spend nine months preparing for your new little one to arrive. You start off researching how big your baby is, “It’s a raspberry this week, OMG now it’s a tomato!” You buy maternity clothes (for me, this started horrendously early!). If you’re as lucky as me, you are sicker than ten dogs and try not to barf all nine months. You reach a point where you start telling everyone you know that you are pregnant. You tell anyone who will listen. The mailman knows. The lady at Shoppers Drug Mart knows. You are so excited about this next step in life. You start buying furniture. You buy every cute onesie you see. You just can’t wait to meet this new little guy or girl. We chose to find out that we were having a new little man in our life, and that made it even more real to me. We spent hours deliberating over names, before choosing one that we were “99% sure about” (aka I knew for sure but wasn’t telling!). Once he had a name it was even more real. We were going to be meeting this guy on August 21, or somewhere around there. I couldn’t wait.

But I waited. And waited. And waited. Finally I started having pain August 24. It continued the 25th. It was go time August 26th, and we got admitted to hospital right at shift change, at 1900. I’ll go into the details at a later post, but know that I had been nervous beforehand. I was nervous about labor, but mostly I was nervous about bringing my little boy home. What did I know about babies? I had never been around babies. I had no experience. They were going to let me bring one home? How would I know how to breastfeed? Even more urgent, how would I know how to get this baby out of me?! Labor progressed and in the morning it was time to push. My nurses were amazing and kept me grounded. My husband was amazing and kept out of my way! I wasn’t sure how I would react to seeing my new son. Would I weep with joy? Would I innately hold him in my arms and just know that our family was complete and that we would be alright? Would my supermum skills kick in and I would stop being so damn worried about where we went from here?

I knew before Thatcher was born that he would be special. I knew, told myself, that he would be gifted. He would play football. He would be a doctor, or a lawyer, or a professor. Maybe he would get there on hockey or football scholarships. He would learn to talk before his peers, learn math when he was four, read at a tenth grade level in sixth grade, just like his mama. I was so smart when I was younger, but I wasted it goofing off in class and not doing my homework, went from a straight A student all the way to ninth grade, to a student who barely passed some classes in twelth grade. My son, I was convinced, wouldn’t do that. I would drive him to be brilliant, to get into whatever university he wanted. He would be a total stud, get all the ladies, but be smart enough to treat them with respect. My son was going to be a golden boy. He was going to be perfect, according to the image in my head.

So back in the hospital, I pushed and I pushed, and finally he was almost here. Only a few more pushes to go, and I would meet the little man who was going to change my life. Finally out he came, my husband cut the cord, and I got to hold him for a few precious seconds before they took him to the resuscitation table to work on him. My husband and I looked at each other with fear and with joy. We had created a life! He was here! Would he be okay? Surely they would work on him, suction him out, get his apgars up, and he would come back and be our perfect little boy.
It seemed like a century before they brought Thatcher Ulysses back to meet us. He was wrapped in a blue hospital blankie with his little blue hat, just a few minutes old. I held him and couldn’t believe he was real. I passed him to my husband, so gently, as if he was made of porcelain. We looked at each other in disbelief. He was perfect! He was ours.

A few minutes later, or maybe more, who knows, we had barely had our time to realize what was going on, a nurse came over to us, or maybe a doctor. At this point we had seen enough medical personnel to staff the entire hospital I work at. She came over to us and asked, oh so gently, the question I will never forget hearing, the one that changed my whole life.

 

“Did you test positive for any genetic markers?”

 

My world stopped turning. My entire life flipped upside down. Every hope, every dream, every picture I had of our future disappeared.
But my son? He is exactly how I imagined, still.
He is perfect.