Wordless Wednesday: My Fashionista

Originally uploaded by sammi's mom

She wanted to wear them, and I'm totally cool with that.

How Sweet it Is

I have received blog awards from my blogging friends a few times over the last few years, and while I haven’t always managed to blog about them and share the love with others, I have always responded to the giver with a heart-felt thank you. I always appreciate the gesture and the thought, as well as the opportunity to gain some new readers and make some new friends.

Tracy at Four Wonders of Life recently nominated me as one of the recipients of this lovely award! But with great power comes great responsibility (or something like that).

Here are the rules of acceptance:

Here are the rules for the award:
1. Copy and paste the award on your blog.
2. Name the person who gave the award to you and link to their blog (or hyperlink).
3. List 10 things that make you happy.
4. Pass the award on to other bloggers and visit their blogs to let them know.

In no particular order, except the most important being first, here are 10 things that make me happy:

1. My beautiful, beautiful daughter, Samantha. I bet you all saw that coming. I mean, she’s the reason I blog. She’s the reason I do pretty much anything. She inspires me every single day. I remember when she was a baby and she would cry, I actually felt calmer. I could never understand why people freak out or get angry when babies cry. The fact that I had this beautiful little life in my hands made me feel absolute peace, and I knew that she would eventually relax and stop crying and look up at me with those big, unfathomably blue eyes, and smile.

(Okay, that’ll be the only long, wordy one – I’ll keep the other 9 shorter and just as sweet…)

2. Ice cream (hmmm…maybe this is in order!). I’m an addict. Ice cream, pretty much any flavor at all, makes me smile. I think Samantha is taking after me in that respect. It’s become a new tradition since last summer to surprise Samantha with a trip to Dairy Queen every once in a while, before dinner, but not so close as to spoil her appetite.

3. The colors orange and pink together, like Peach Melba. Or orange and turquoise, like sunrise on the beach. Mmmmm…beautiful.

4. My husband. He works so hard at everything he does, and is a consummate perfectionist. And he cooks. I might starve or have to survive on ice cream if he didn’t. He’s not always the easiest person to get along with, but he puts up with an awful lot in me, so who could really blame him? :-)

5. The ocean. I was never a beach person as a child or young adult, but I have grown to really enjoy the smell of the salt mixed with a hint of seaweed and suntan oil, the sound of the crashing waves, and the cry of the seagulls overhead (as you duck for cover from their gigantic and indiscriminate pooping).

6. Bluegrass music. I don’t actually seek it out or own any, but I do love it. This will probably surprise a lot of people who know me. I tend to get really patriotic, too, when I hear it. I love that the roots of America kind of live in the sound.

7. The 80s. The music (well, the 80s music I used to listen to, not the crap stuff); John Hughes movies; growing up in simpler times… Not the clothes or the hair styles, though. Those I could easily and happily forget about.

8. Gardening. My husband doesn’t know this about me yet, and he probably won’t even believe me when he reads this, since I have a pretty terrible track record in the past with the plants I’ve tried to grow in our apartments. Finding the time to do any gardening is difficult to do, though, because I’m chasing after Samantha on my days off, but I can’t wait to get my hands into the dirt and make things grow this year. Steve’s built a couple of raised beds for vegetable gardens and two raised flower boxes that I want Samantha to be able to make her own.

9. The internet. I continuously marvel at how much information is out there, and always breathe a sigh of relief that Samantha was born in this time of connection and knowledge for everyone in the blink of an eye.

10. Sleep. Sleep makes me happy. That feeling of putting my head on the pillow and pulling the blankets up to my neck is so overwhelming for me every night, and I succumb very quickly. I sometimes think I’d be capable of going to sleep in the middle of a crowded shopping mall or supermarket. Where there’s a will there’s a way.

So, that being said, here are my own nominees for this blog award:

Monica at Monkey Musings - her blindingly beautiful and growing family can be found here, with a particular focus on her chromosomally-enhanced little doll, John Michael.

Jo Ann at Ever Forward, Maya - Jo Ann and I "met" a while back through our photo postings on Flickr, and I have been dazzled by her gorgeous, sweet little girl, Maya, ever since.

Rob, from Really, I'm as Old as I Feel? - I also "met" Rob first through Flickr, a few years ago. He and his family (wife, Anny and adorable little girl, Abby) are not part of the Ds community, but wholeheartedly support all of our efforts at awareness, and for that I am so grateful. They even joined our Buddy Walk team this year, in the bone-chilling wind and rain! He writes of his family and of the challenges of life with chronic kidney disease.

Faker

Samantha and I were sitting at the computer on Sunday, looking through some of the photos I had taken of her on Saturday morning. On Saturday I had dressed her in a flowing white cotton dress I found in a thrift store recently. The weather could not have been more beautiful, and in the light coming through the open windows, Samantha looked like an angel.

She laughed and smiled as we looked through the pictures.

“Sammi, what are you doing in this picture?”

“Duck feet!” she replied as an image of her pulling yellow dish gloves onto her bare feet flashed up on the screen.


“What about this picture?”

“Sammi dancing,” she replied to a shot of her prancing around, acting silly.


“And what’s going on here?”

The image of an actress-in-the-making popped up, eyes squinched, mouth open, arms crossed in defiance. I can still hear her yelling, “No, MINE!”

“Faker!” Sammi responded.

Exactly.

WDSD: A Day to Celebrate, Make Changes Happen, Reflect and Remember

Today is World Down Syndrome Day. 3/21. Get it? 3 copies of the 21st chromosome = Down syndrome. Cute and catchy, just what’s needed to build awareness! Today also caps off Down Syndrome Awareness Week, which was from March 15th to March 21st. The only thing better would be if this was also Down Syndrome Awareness Month, but unfortunately that month is shared with and overshadowed by Breast Cancer Awareness Month, in October. Ummm…who do we talk to to get this changed?? Is there some sort of council that makes these designations?

At any rate, I will be celebrating today by choosing the 37 models for the 2010 DSANV calendar, along with a friend and fellow DSANV mom who has volunteered to help me with the project this year. An appropriate and timely activity, I think. It’s funny, in the e-mail I sent out for the call for models, I said that I would be doing the drawing on the 21st, not even realizing the significance of the date.

Samantha doesn’t know that it’s WDSD today. She doesn’t know that she has Down syndrome, or that she’s at all different. And she certainly doesn't know what a chromosome is (heck, I barely do!). I make my resolution on this day that I will teach her to be strong and independent as she grows up, and to embrace her differences. I resolve to show her the way of self-advocacy, but allow her to make her own decisions about the things she wants to do and how she wants to do them (within reason, of course). I will teach her to love life and the people around her, and to forgive ignorance. I will continue to educate the people around us about the possAbilities of people with Down syndrome, and to pave the way for all of the opportunities she should be entitled to have and to choose from as she grows up to be the amazing woman I know she can be.

Today is also a day to remember the past, and to be thankful that the lives of people with Down syndrome have changed so dramatically in as short a time as just the last two decades. It’s a time to reflect on how things could have been, without the medical advances, resources and social conscience of today. One of my non-Ds blog friends (but fellow heart-mom), Amber, wrote a touching and heartbreaking post about a funeral she recently attended for a cousin. This cousin had Down syndrome, and had spent her life in an institution. A lack of physical or mental stimulation resulted in her abilities reaching no farther beyond those of a 3-year old. She was 32. Tragic. And important.

I am grateful. Every day. For SO much.

Wordless Wednesday: Learning T-Ball as a Special Olympics Young Athlete

Oh, What a Difference a Year Makes!

While settlement was in February, one year ago today was the day we actually physically moved in to our new (first) house. Steve had spent two weeks hard at work getting things ready for that day, turning cold, dirty, monochromatic bachelor pad into warm, welcoming family home. That first night was so exciting, getting used to the new sounds of the furnace kicking in, wind brushing gently against siding, the click of kitty claws on wood floors, and the creaking of the stairs as they made their way up to bed. Listening to birds settling in the decorative pear tree outside our bedroom window in the morning was such a sweet sound, and we knew we would be happy here.

The house still has a long way to go, with a laundry list of things that need to be done, some more urgently than others. Steve's been doing them mostly on his own, which is such a huge undertaking. But I figure it's kind of like how things go with road crews - once one patch of road is done, it's on to the next, then the next, then eventually it's time to start from the beginning again. The list will never end, and that's part of the beauty of owning a home. But the house is beautiful, inviting and cozy, and it's home.

Home. That's a word I'd waited so long to say.

Home. A place where Samantha can grow up and have that warm, safe feeling that I always had when I was a child.

We are extremely grateful to my mother and step-father, Ray, for making this happen for us. We are eternally indebted to them. How do you repay someone for this opportunity? Thank you both.

Before & After

24 Months

The age that Samantha was nearly two years ago? Not the answer I'm looking for...

The amount of time it takes for the earth to revolve around the sun twice? Also not it...

The age at which a private PT has evaluated Samantha's current gross motor development? Bingo.

24 months?

I knew she had been falling further and further behind, but I had no idea it was nearly two years back. Or maybe I did, but seeing it written out and presented to us in black and white made such a huge impact. A shocking one. A startling reality.

Samantha started walking at 21 months, which is a bit early on the average for a lot of kids with Ds, I think. While we had always felt, from her birth, that she was pretty strong, we really weren't expecting her to fall back once she became fully-mobile. But there are two sides to the coin - with full-mobility came an explosion of language, for which I am extremely grateful. If I had to choose one over the other, I'd pick verbal communication every time. I think most people would. But when I started seeing her peers who walked much later than she did begin to progress and surpass her in their physical abilities so much more quickly, I realized that we needed to address her gross motor development again. I'm not comfortable with her on stairs or playground equipment. These are basic, everyday needs.

Samantha's IEP meeting is coming up very soon. You can bet that PT is going to be a major point for us. For those of you who have had similar experiences, please tell me some of the PT goals you had on your children's IEPs, as I'd love to be fully prepared with some logical, relevant, achievable, short-term and long-term goals.

Wordless Wednesday: The Eyes Have It

Vote for Sammi!!

Please vote for Samantha in the NDSC’s More Alike than Different campaign poster contest here! She's #136. I heard about the contest just a few hours before the close date for submissions, and rushed to complete it while Samantha was napping. The 1-hour window of her nap time is when I rush to complete a lot of things, and, sadly, it rarely includes a much-needed nap for mommy. Which is evident in the title text on the poster. Pretty obvious I didn’t proofread. I managed to switch around the “You or Me” as “Me or You.” Trivial, most of the time. Not so much here, as the emphasis really should have been on “Me” at the end. It kind of changes the tone of the message. *sigh* But I still love it, and am really not too bothered about it. I’m just glad I managed to submit it in time, and hope my beautiful girl can spread her message now and long into the future as a self-advocate.

And with music in mind…Steve’s birthday was on Saturday. Yep, he’s old. Well, older than me, at least, and if I’m old, the he’s old too. When I got Samantha up that morning, I told her she needed to go into our room to sing Happy Birthday to daddy, which she was quite excited to do. He was already awake, but still lounging in bed (sheesh, how come I never get to do that?). Sammi walked up to the edge of the bed and sang her rendition of the birthday song, which went something like this… “Happy happay to you, Happy happay to you, Happy happay to Daddy, Happy happay to you…” I don’t think a birthday could possibly get better than that!

Spread the Word to End the Word

Have you ever said it? And if so, in what way did you say it? It’s quite a contradictory word that can be used innocently enough, but can also be used in a mean, hurtful manner. Most of you reading this already know what I’m talking about. I’m talking about the “R-Word.” Not sure why I just capitalized that, because it really doesn’t deserve it. Retarded or retard. The thesaurus next to my desk states, “1. [said of persons] backward, underachieving, stupid 2. [said of activities] delayed, slowed down, held back.” The root of the word comes from the Latin word, tard, or slow. In music terminology, the Italian term ritardando means to gradually slow down. Perfectly acceptable. There was a time when a group of people with intellectual or developmental disabilities would be called “retarded.” Again, not really a problem when referring to a real medical condition in which development is delayed – it’s just antiquated, especially given the way the word so easily became a mean-spirited, hurtful put-down.

My husband and I had a long talk about this topic this morning. I asked him if I could tell the story of a day when Samantha was about a year old, when he was in England visiting his family, and I was on the phone with him. He was at a party with his siblings and some other people, and when I asked him about the ruckus (ruckus?) going on in the background, he said, “Oh, I’m just hanging with this bunch of retards.” I called him on it immediately, he apologized, and we never spoke about it again. In the nearly 20 years I had known him, I had never heard him say that word, and it truly surprised me. I never faulted him, and knew that he didn’t mean it to hurt Samantha in any way, but in retrospect, I always thought that he was just trying the word out, like tasting it to see what it would be like to say it. Understandable. But today he said that my theory was incorrect. He said that he said it just to say it. He said it because he was referring to his cohorts as a bunch of idiots. He admitted it to me, and when I told him I would not blog about that story, he said I should, to illustrate just how easy it is for people to say and not realize the damage they’re doing. He absolutely did not realize it, and is a prime example of how carelessly people can throw that word around. (Oh, by the way, he said if he gets hate mail from people after this, I’ll have more than that word to worry about and that I’ll have several very un-PC words aimed my way. LOL)

The state of Virginia is ranked 46th among the states for the provision of services available to people with intellectual disabilities. However, a bill was recently passed to remove the term “mental retardation” or “MR” from all legislation, existing and future in favor of “intellectual disability,” or “ID.” Some of our local advocates were instrumental in seeing this come to fruition, and it marks a very important step in the recognition of people with these disabilities as people with a fighting chance at a Life Like Ours. Antiquated terms with negative attached stereotypes should be removed. Now this is not to say that the term “Intellectual Disability” may one day become taboo, but it looks pretty unlikely from where I sit. I can’t see children on the school yard throwing around the epithet, “You’re just an intellectually disabled person!” A little too bulky, huh?


Today is End the R-Word Day. You may not have known that. Or, if you’re on Facebook, and have a child with Down syndrome, you probably did. Today is not the only day you can spread the word, but it is a day to stop and think about how you can help to end the word. If each of us can touch just a few people by passing along this message in some way today, that’s more awareness than yesterday. And hopefully those people that receive that message will realize how much hurt it can cause, to us, to our children, to a whole population of world citizens affected by intellectual disabilities in some way.