...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Sunday, December 19, 2010

Well Dang It!

Tonight The Girlie and I were just living life in the living room. She was playing with toys, I think I as folding laundry. The Poddest of Pods was playing in his room and the Pillie-Pie was on the floor, rolling around with his bad self. And The Girlie asked, "Mom, why don't we say The Girls (our pit bulls) are retarded anymore?" Well, it's not a nice thing to say, and technically, it isn't really true. I'm not the one who used to say they're retarded anyway. "I know, but why don't we call them retards anymore?" Because it's not a nice thing to say. In fact, if you think about it, it's a really 'not nice' thing to say. And she started peppering me with "Why.." and "What if.." and "But so-and-so..."

So I stopped what I was doing and sat down, addressed her directly. Listen. William is technically what 'retarded' means. Stay with me here. Don't get mad until I can explain. He has Down syndrome, and that carries a certain degree of mental retardation with it. But when people say it just out of hand, "These dogs are so retarded!" it's kind of insulting to people who really are mentally retarded. When your friends at school say "You're so retarded!" or "That's so retarded!" it's just like they are saying stupid, worthless, crappy, bad. I'm pretty sure I lost her the instant I said that her baby brother was what retarded meant. I started over and explained it again.

William has Down syndrome. Medically speaking, (She's quite familiar with this term) William has mental retardation. We don't know yet how minor or severe his mental retardation will be, but it's a simple fact that many, many people with Down syndrome have it. I don't like it and I know you don't like it, but that's why calling things and people 'retarded' is so wrong. William will probably be mentally retarded, but he's not a bad thing. So when you say "Our dogs are so retarded" it's like you're saying "Our dogs are so stupid, crappy, wrong or bad." Do you understand? She was angry at me for saying this about her baby brother and she was sad enough for Willie that she started crying. Honey, people are going to say this about Willie at some point. "He's such a retard!" You have to be prepared for it and stop saying this word yourself so you'll be beyond reproach when it happens. (Yes, my 11 year old really does know what 'reproach' means!) You can't get mad at people for saying Willie is retarded if you just said so-and-so is 'so retarded.' It would be the same if they said 'Willie is so crappy,' 'Willie is so stupid,' 'Willie is so retarded.' She promised that she would not use this word ever, and that when ever she heard it she would think about what it really means. It will take her awhile and some thought and planning to actually speak out against it. And a fair amount of bravery. Or maybe it won't. Some souls go willingly where angels fear to tread.

I went back to my chores with a heavy heart, and she went back to playing. A few minutes later she scooped William up and held him close to her face. "You are NOT retarded!" she declared. "You are not!" She held him close for a few minutes before laying him back down on the floor with a toy to play beside him.

I wish I could say this conversation was over, and that perfect clarity had been achieved, but no, it continued later in the evening. "So Mom, am I retarded?" No, why would you think that you're retarded? "William gets all these therapies. We get therapies too," complete with hand gesturing. "I have autism. Does that make me retarded?" So I explained about cognitive disability and learning delays. That she had a learning disability, not a cognitive disability. Now that her teachers and I have figured out how best to teach her, she is learning at rapid speed. Same with The Middle Little. Although his autism seems significantly more severe, no one could say that he isn't smart or that he is mentally retarded. Quite the contrary. So then she wanted to talk about Jasmine on the bus. Jasmine rode The Middle's bus last year, and now she rides The Girlie's. While she rode The Middle's bus, he came home every single day with complaints about what Jasmine had said, what Jasmine had done, about Jasmine in general. Jasmine this, Jasmine that. Jasmine, Jasmine, Jasmine! Now that she rides The Girlie's bus, and the daily complaints about Jasmine are once again in full swing from my Oldest child, The Middle seems to have a very soft and fond spot in his heart for her. Mostly to piss off The Girlie. He is now Jasmine's champion at every opportunity. I tell her that I don't know about Jasmine, so no, I cannot say if Jasmine has mental retardation or not. "She has autism Mom, and it's really bad. She does all sorts of things that are inappropriate and they are really bad. (I swear on all that is chocolate that she uses this vocabulary!) But she acts like she's also retarded." Again, I say that I don't know Jasmine, so I cannot say if she does or doesn't have it, but many, many children with autism have behaviors worse than The Middles', and it may just look like they have mental retardation, that it's still important to treat them well no matter what. I'm trying really hard to turn this mental retardation into a thing rather than a trait. Rather than a component of one's personality. Or a value. Or worth. Or a measuring stick.

So this conversation went on for quite a bit longer. We talked about some of the people in our lives who still use this word. We talked about how it makes us feel. I had to admit that someone very close to our family still says it frequently in context of something being stupid, and that I have yet to call her on it. I knew this conversation was out there waiting...I guess I just thought that Our Olders understood that Willie would have some degree of mental retardation, and that's why we don't use that word. I'm guessing that it will be The Girlie, in her gentle and direct way, who will call out our good friend who uses the R word so often. Better her than me, for the simple fact that her words will not be clouded by emotion or alliance or betrayal, but rather will contain simple fact. Simply, clean, pure fact.

At least two more times during this evening, I found The Girlie cuddling her Baby Brother, insisting to him again that he is not retarded. From her lips to God's ears, I hope everyone else in his life will see him that way too.


Holly W said...

I dread having that conversation with the big ones...
because I know how upset they'll be..
what a sweetie

erikatx said...

wow.. this is such a difficult conversation to have with a child. I once tried to explain it to my 9 year old daughter, and I also think I lost her somewhere at "Ethan has mental retardation" as well. its tought. But I Wasnt as good as you and I couldnt really explain it, not to mention that Ethan then was much tiner and I wasnt as well with words. I still wouldnt know how to explain it to her. Thankfully she attends a sibling social club where these things are addressed.

Tracy said...

Hi Erika!
I follow your blog!!!! One of my children shares a name with one of your children, but I am forbidden by The Dear Daddy from saying which one! It is a tough topic...it's going to be harder with My Middle because he wants to rise to the defense instead of seeing the reasoning behind what I say. Wish us both luck!

erikatx said...

well all of my kiddoes have beautiful names! Yes good luck!