Thursday, November 27, 2008

Things I Am Thankful For

Steve thinks I take perfectly good photos and go and ruin them with all of my editing. But there are two truths to this--first of all, I save all of the originals as well as all of my edits. Second, I often (but not always) take photos that had color or exposure issues and turn them into black & white because I liked the image and black & white was the only way I felt I could salvage it. I also have this obsession with that nostalgic, almost Victorian feel, especially when it comes to my naturally beautiful little girl. I swear, it hurts to look at her sometimes--I just feel like my heart is going to swell right out of my chest and I forget to breathe. When she was born, two words that I never, ever thought would be associated with my daughter were "beautiful" and "smart." I would freeze up any time anyone would joke about whose looks or brains she got. The jokes were meant the same way they would be meant with any typical child, but the image in my head of a child with Down syndrome was so old-fashioned and far from the modern truth that I thought anyone anticipating beauty or brains was just being cruel and blind. But I do know better now. I may be biased, but I think that children with Down syndrome are the most beautiful, exotic children, and they certainly can be capable of so much!

Things I am thankful for on this Thanksgiving Day:

1. My daughter--every inch, every cell, every chromosome.
2. My husband--devoted husband and father, great cook, brilliant sense of humor.
3. My family--my parents have done so much for us and helped us through a lot of challenging times. They brought me up with a wicked sense of morality and gave me a well-rounded childhood, which have shaped me to be the parent that I am.
4. The internet--what did we do without it? What would we have done without it when Samantha was born? It's such an amazing resource, and I've been able to connect with old friends many times over. The world has become so small!
5. No longer working in retail--whew, another holiday season that I don't have to work rediculous hours, babysit my staff and hold the hands of rediculous, spoiled customers.
6. My digital camera.
7. Sesame Street--sure, some of the characters have changed over the last 40 years, but I learned well from it, and so has Samantha. She just loves "Momo" (Elmo), "Weewee" (Zoe), "Babby" (Abby Cadaby), "Vuhvuh" (Grover), Cookie and "Nernie" (Ernie).
8. Modern medicine--I should have mentioned this earlier. I am very, very, very thankful for modern medicine. Sheesh, childbirth alone (not to mention open heart surgery!) is reason enough...
9. Milky Way bars and Snickers with almonds--eek! My hips just said that, not me!!

There are so many more things I'm thankful for. I'd wanted to list some funny ones, but my brain isn't functioning so well tonight after having scarfed a huge Thanksgiving dinner, and I'm fighting a bit of a headache. It's not even 9pm, and I'm about to go get into bed. Gotta hit the mall bright and early tomorrow morning! Samantha has her OT appointment tomorrow morning, as well, and I'm excited to actually be able to go to it, since I'm usually at work. Yes, another reason to be thankful for not being in retail anymore.

Wednesday, November 26, 2008

Some Random Thoughts

I have to start this post out with this photo--Steve took Samantha to Pentagon City this morning expressly to have her photo taken with Santa. Unfortunately, she was tired and cranky and refused to smile for the camera, but he managed to get a few cute shots. Of course, to take any of our own photos we have to purchase one of their photo packages. 26 bucks later and a rather funny look later (this photo was taken with our own camera--the official version is quite funny and looks like Samantha has her mouth open to say exactly what's on her mind!) we have the first of our 2008 holiday memories. Is it weird that we had a photo taken with Santa and it's not even Thanksgiving yet? I love this Santa--we had Samantha's photo taken with him two years ago, but for some reason never got around to it last year. She was quite taken with him today, and kept walking back over to him to touch him after the photo was over. Luckily there was no line of people waiting... She's been taking the photo every chance she gets and just stares at it, saying "Danta."

I got to leave work early today. It was an absolute ghost town in there, as I'm sure many workplaces across America were. I went over to the mall to put some things on hold at Children's Place to pick up Friday morning. For any of you Children's Place shoppers, they're having an additional 20% off everything in the store as their early bird special Friday morning until 11am, and you can combine it with your 15% coupon (you can Google "Children's Place coupon" and print one off the internet or you may have received one in the mail...). I am a hopeless bargain shopper. Things usually have to cost next to nothing for me to buy them. Discounts on top of discounts on top of discounts usually get my attention pretty quickly.

Samantha had her usual 6-month appointment with Dr. Lewanda last month and her bloodwork came back weird for her thyroid tests. This would make perfect sense to us since school had been reporting that she'd been unusually tired in the mornings for a few weeks, and had been more tired than usual at home. However, she may be going through a growth spurt and she has 4 molars working their way in, so that may account for some of her crabbiness. We had the bloodwork re-done last week, and today we got the call that the levels had gone back within the normal range again. Weird. And she's been fine at school lately, too. I've heard from other people that thyroid levels can fluctuate and confuse the heck out of people. We'll just have to be extra vigilant.

I'm sure I had more that I'd wanted to say, but I'm now struggling to keep my eyes open. I'll post a "Things I'm Thankful For" list tomorow at some point, either post-coffee in the morning or in a food coma in the evening. I bet each would produce completely different list items, too. Maybe I should do both...

Oh, here's another question for addition to the "Angel" b&w image I want to use as my holiday card image (scroll down to Halloween), I'm contemplating the one below. Please let me know your thoughts!

Sunday, November 23, 2008

The Elephant in the Room

One of the most exciting things I've been reading lately is Bethany's blog over at Life With Bubba, Chicky & Nika. Bethany and her husband have recently added to their family by adopting a child with Down syndrome from Russia. It's been amazing to follow their journey over the last few months, and they finally returned home last week with their gorgeous new daughter, Nika. A couple of weeks ago, I was sitting in the lunch room at work with a table of my co-workers (people I don't work directly with, but know peripherally), and as one of the guys is from Russia, I happened to mention that a friend was in Russia adopting a child. The conversation then shifted to Down syndrome and the desire by Westerners to adopt children with disabilities from other countries. Not being a native English-speaker, he asked, "What is Down syndrome?" I'm sure that in his own language he would know exactly what it is, but I began to describe some of the usual issues with Ds, such as heart defects, learning delays, fine and gross motor delays... Everyone was looking at me, and I could just feel the word hanging in the air--I felt them waiting for me to say it. You know the word--it's the one that has a big slash through it in the box at the top of my blog. The word that would probably have made him go, "Ohhhh, I understand," clarifying everything quickly and easily, but I didn't say it. I just left it at that. It was a very positive conversation overall, but I'm not sure he knew exactly what kind of disability I was talking about. The rest of my lunch companions did, and I think that they learned something. I do try not to get on a soap box when I talk to others about Down syndrome, but I like to try to create some understanding about it. I can't help wondering if my overactive imagination and hyper-sensitivity had me thinking that they all were waiting for me to say the word, though, and I wonder if this is something I'm going to be paranoid about for the rest of my life.

On another note, I was shopping in a store in the mall today with Samantha in her stroller. Samantha was so miserable with me not letting her out to run around and get into trouble, and I found that the only way to keep her happy was to park her in front of a rack of clothes and let her play with them on their hangers while I shopped nearby. Samantha reached out for a green blouse and said, "Green!" (she's known her colors for a while now), and another woman shopping that same rack was absolutely floored. Shocked, she said, "Wow, how old is she?" I responded that she's two and a half. The woman said, "She's not even my daughter, and I'm so proud of her!" hehehe. The thing that especially made my heart swell at this was that I think the woman was referring to any child at that age, and was not acknowledging (or noticing) Down syndrome as a factor. Is that unrealistic of me to think? Also, perhaps the woman thought Samantha was younger than she is because she doesn't speak intelligibly. *sigh* Maybe I'm naive.

Just for fun, here's a squidgy newborn pic of Samantha...

Sunday, November 16, 2008

Just Some Pics and Opinions Requested

I don't actually have anything to say today, but wanted to post a few pics of Samantha that I took this weekend. Yeah, yeah, I know it's a lot of black & white and high contrast, but I like playing. That, and Samantha has become less and less cooperative about looking at the camera and smiling or posing. Not like I think that all of my photos should be posed, because I don't. But she's totally rebelling, and knows full well that I'm trying to pull out all the stops to get her to look at me with those gorgeous blue eyes, and knows full well what I'm doing with that camera in her face. She likes me to suffer once in a while.

Oh, also, I'm trying to decide what photo I want to use for our holiday cards this year, and have it narrowed down (barring any better ones coming before I send them out) to two different treatments of the same photo. This photo is of Samantha in her Halloween costume, but I think it looks pretty angelic. Please let me know which one you like better (or tell me if you don't like either of them...).

Friday, November 14, 2008

The Joys of Blogging

These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes or self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated.

Please give more attention to these writers!

I write this with heartfelt, happy tears in my eyes, as I take a bow. Well, not really, but c’mon, I can imagine my own Sally-Field-1985-Oscar speech, can’t I? (Sheesh, gotta remember to stop dating myself…) But I am very grateful to those of you that read my blog and offer advice and support to me and to others who read. Jay at The Hill Family of Northwest Arkansas gave me this lovely award last week, and I love the idea of paying it forward (now how many times has that phrase been used for blog recognition awards?!) and, in turn, recognizing other blogs that inspire me. Thank you, Jay!

When I started writing this, about a year and a half ago, I originally meant it to be an online diary of sorts. A place I could pretty much write whatever I wanted. I quickly realized that you never know who is reading, and I learned to self-censor. There are two definitely taboo subjects: work and family. Ha! As much as I would have liked to complain about a particular person at work or as much as I would have liked to really have a discussion about an interesting or quirky personality at work or a family issue, I knew that I could be Googled as easily as the next person and could seriously rock some boats. Heck, I’ve never even mentioned the names of my workplaces, to play it safe. A friend of mine who used to blog all the time and recently began to post less and less frequently made me really think about it—she said that she doesn’t post much anymore because the biggest part of her life right now involves an issue with a family member who reads her blog.

Another reason I started my blog was that I was also sick and tired of filling up my e-mail storage space to the limit with multi-megabyte photos I’d sent to family members so they could see Samantha’s growth and progress. I joined Flickr at about the same time as a complement. I realized that this blog could be bigger and more interesting (sometimes, I hope!) than a pretty basic photo-repository with some “here’s what we did today” commentary (although that’s still important to do!), and found that soliciting advice and sharing ideas was so much more beneficial to me and made for better reading. I know there’s so much to learn, but I hope to continue to progress and develop something that others can enjoy and learn from, too. With that, I can only ask for honest feedback. I’d like to continue to grow my readership; it’s kind of like a message in a bottle that could wash up anywhere—I love to see how far away readers visit from, and how they got here. I get my fair share of people who found me by Googling “Bates Motel,” but more and more there are deliberate readers, which makes me happy. The Down syndrome community is HUGE and I’m so grateful for all the other bloggers (ugh, why is my spellcheck stopping me every time I type in the word “blog?” You’d think it was a normal part of the English language by now!) out there who have provided inspiration and entertainment, information and a bit of voyeurism into their lives.

The first person I'd like to pass this award on to is Carol, at Cookie's Daughter. Carol, I hope you don't mind me tagging you here (let me know if you do, and I'll edit!). Carol is the mother of three boys, one of whom, adorable little Aidan, has Down syndrome. Carol's writing is thoughtful and expressive, and she's not afraid to write exactly how she feels. She's also been a driving force in a few of Flickr's forums, uniting people by coming up with thought-provoking topics for discussion. Although her postings are few and far between, I hope this might spark a flurry of new posts...???

The second person I'd like to pass this along to is Amber, at What's New With The Baker Family. Amber's a mom with a HUGE heart. In addition to her natural children, she is a devoted foster mother to many and adoptive mother to little Gracie. Gracie was born with several complex medical issues, including a heart defect. Amber's writing is incredibly inspirational, and she sets the example of what truly selfless mothering is.

Thank you to everyone whose blogs I read regularly (there are sooooo many!), and thank you for introducing me to so many more! I'm proud to count many of you as friends.

Tuesday, November 11, 2008

Up Close: A Mother's View

I have a slightly different blog post today, but one that I’m quite excited about. Carole Kitchel Bellew of Bunker Hill Publishing was kind enough to send me a copy of a beautiful new book, Up Close: A Mother’s View, by Fiona Yaron-Field, to review here. I’m definitely not much of a book reviewer, but I can certainly share my thoughts. The world of a new parent of a child with Down syndrome is filled with so many questions, so much searching for the answers about what our child will be like as he or she grows up, how our child will be accepted by his or her peers. Fiona Yaron-Field uses words carefully and sparingly, as poetic accompaniment to striking photographs of her daughter, Ophir, during the first twelve years of her life. Up Close: A Mother’s View is both uplifting and poignant with humorous moments at times, and it gave me the feeling of looking into Samantha’s future and seeing a very full and enjoyable childhood, not that much different from my own. I am now also inspired to try to become a better photographer (either I need a new camera, or I need to re-discover the portrait setting on the one I have, and start cleaning up some of the background noise in my shots…).

I think you would all enjoy this book, and know your coffee tables would thank you. Feel free to post some of this information on your blogs or listserves to let others know about it, too! Up Close: A Mother’s View is hardcover with 144 pages, including 55 photographs (mostly full-page), and retails for $35.00.

Below is an excerpt from the press release, followed by some of the advance praise for the book:

Up Close: A Mother’s View is an extraordinary book of the life of a child with Down Syndrome. With some 50 photographs taken over the first 13 years of her daughter Ophir’s life, and a meditative thoughtful text, Fiona Yaron-Field conveys her moods, reactions, impulses and emotions as a mother. It is a work of great tenderness by a mother about her daughter, about their life together; together and apart, in intimate moments caught silently by the camera, from birth to adolescence.

Her clear lucid words frame the affectionate and unflinching focus of the camera on her her growing daughter’s feelings, attitudes and strong personality.
Their story is emblematic, true of so many mothers and daughters facing the same challenges the world over. It is a story of inspiration and empathy, told in words and photographs of great emotional impact and vision.

"This is a very moving and beautiful piece of work. I find these images and words extremely emotional and full of feeling. Up Close: A Mother's View is just a wonderful book."
Dame Helen Mirren, DBE

A mother, a daughter; ordinary worries, extraordinary worries; ordinary love, extraordinary love. The words and pictures that grace Fiona Yaron-Field's magnificent portrait of her daughter give us a privileged view into one mother's fierce caring and joy for her little girl. And through it we are warmed and reminded of the magnificence of life.
Susie Orbach (author of Fat is a Feminist Issue)

Fiona has been incredibly honest about her feelings towards Ophir in a way that most of us would never have the courage to do. She has managed to capture some amazing images that help the reader to understand something about the bond that exists between them. A fantastic read!
Carol Boys, Director-Down’s Syndrome Assoc.-UK

Saturday, November 8, 2008

Fun Day/A Surprising Word

Today was definitely a fun day today for Samantha and me. Renee, Sammi's former PT, hosted a giant playdate at the Old Mine Ranch. Pony rides, loads of sheep to pet, a moon bounce, a sand box (complete with kitty poo from a couple of very sweet little kitties), a hay ride, about 30 preschoolers (including Sammi's classmate Bella!) and lots of space to run around made for a very full and exhausting morning out. Thanks, Renee, for inviting us! It was an absolutely gorgeous day, and it was so nice to be somewhere that Samantha could run around and explore without having to worry about cars, treacherous terrain (with the exception of the occasional pile of bunny poop) or other common hazzards. I do have to worry with her, though, because she can be quite fearless.

I actually bit the overprotective parent bullet today and put Samantha in the moon bounce for the first time. There weren't too many children in there, and all the kids were roughly the same preschooler size, so she was pretty safe. She crawled around happily at first, but with some coaxing I managed to get her to stand up and try walking. She laughed hysterically every time she would tumble over and just got back up again. I was very proud!

Now, about that unusual word... The woman who runs the ranch was very, very nice, and obviously loves what she does. And she does everything! From taking the money to guiding the pony rides to driving the tractor for the hay ride, she seemed to be everywhere at once. The fee to get in is $6.00 per person, with children under two admitted free. Of course Samantha is nearly 2 1/2, so I gave her $12.00 (I remember a thread on one of the Down syndrome message boards a while back about whether or not people lie about their kids' ages to get discounted admissions and wondered what I would do in that situation once Samantha was two. I think I'd have a hard time lying about that anyway, even if I wanted to...). A few hours later, she came up to us and handed me back $6.00, apologizing for having accepted it from me in the first place because "All the handicapped kids get in free." I was so surprised to hear that word ("handicapped", not "free"). Not because it's bad (she was so nice about it, and totally sincere), but because Samantha, in my mind, is so far from being "handicapped" that it's almost laughable. But what is the real difference between "disability" (not such a surprising word) and "handicapped" (a kinda startling word)? I definitely acknowledge that Samantha has a disability. Can any of you differentiate for me? Just to settle my own curiosity. At any rate, I thanked the woman and tried to give her the money back, telling her Samantha had a wonderful time there. It definitely didn't bother me--it just gave me food for thought.

Thursday, November 6, 2008

Happy Anniversary, Steve!

Today is Steve’s and my anniversary. I bet you can’t guess how many years we’ve been married! Let’s put it this way, it’s been a LOT. And I love him more and more every year. We are such different people than we were back then, and have grown together in so many ways. The secret? Let him have the remote control. (Just kidding, Steve!! I love you!)

Okay, we’ve been married for 17 years and together for 18. Were any of you even close to guessing (other than those of you who obviously know)? Now, our big secret, which isn’t really a secret any more, is that we were married twice. We got married in England on November 6th, 1991. Steve had never met my family, had never been to the US, had never even been on a plane!! It was pretty impulsive. I’m going to have to post a photo, but I don’t have any scanned in yet. Maybe I’ll update tonight… I wore a short-sleeved vintage black lace dress with crinolines underneath, and had just gotten my down-to-my-waist length extensions re-done. I think I was wearing black boots on my feet, but can’t remember off-hand. Steve wore a multi-color paisley button-down shirt, a black suede waistcoat (vest, to all you Americans), black stretch jeans and cowboy boots. His long, black hair was back in a ponytail. We got married in the local Rugby registry office (Rugby’s a town, by the way, and yes, it is where the game was invented).

A year later, we had a ceremony here in the US, but nobody (other than the minister who married us) knew that we had been married already the year before. We promised her that we’d tell my parents eventually, and settled on the arbitrary date of the birth of our first child to help lessen the shock (okay, okay, we had no idea that the birth of our child wouldn’t be until 15 years later!!). I have to thank my parents for being so gracious upon receiving that news…

Anyway, I did a little bit of memory-lane fact checking to take you all back to 1991 and to put into perspective exactly how long ago 17 years was!

George Bush Senior was President and Dan Quayle was Vice President.
The Soviet Union ceased to exist.
Jamie Lynn Spears was born (ugh).
Freddy Mercury died.
The Gulf War began and ended.
Serial killer Jeffrey Dahmer was arrested.
Pee Wee Herman was arrested (I’ll skip the details).
The World Wide Web is launched to the public (ohhhhhh, now THIS makes me feel old!).
PanAmerican World Airways ended operations (Really? They’re not around anymore?).
The cost of a 1st class stamp was $.25.
Dances With Wolves won the Academy Award for Best Picture.
Nirvana had a hit with “Smells Like Teen Spirit” and the grunge movement took off.
Silence of the Lambs, Beauty and the Beast, JFK and Thelma and Louise were shown in theaters.
The average cost of a movie ticket was $4.21.
There were 7,557,148 cell phone users in 1991, compared to 233,000,000 in 2006.
The Motorola MicroTac Lite cell phone became available for about $1,000.