"Parley", Part 2 (or Should I Say, #2?)

Okay, just this one last post about it, then no more blogging about poo. I promise. Samantha went to bed @8pm last night. At about 11, she woke up coughing. She's still a bit congested from the cold she had, and she's been coughing whenever the phlegm (hey, I didn't say I wouldn't blog about phlegm, though!) gets all pooled up in her throat. Yuck. She coughs until she throws it up, then seems quite happy to have gotten it out for the moment. Well, last night, in the middle of one of her coughing fits, she said "poo poo". I asked her if she had to go right now, and she got all excited, nodding, and said "yes" (it's so cute the way she says yes--she's so emphatic. She used to say "yeah", but we've been working on it with her, and now it's "ess.") So I pulled her jammies off, popped the Elmo potty ring on the toilet, and dropped her on top of it. After several minutes of concentration (and some more coughing), there it was! I was so unbelievably proud of my little girl! She was pleased, too. For that she got a big Elmo sticker, which now resides on the wall next to the toilet. I thought for sure she would never do that in the potty, since she mainly only does it when she's asleep.

I only blog about this now because I'm trying to establish the existence of a pattern with her. So now that there appears to be a pattern, I can stop talking about it. Unless, of course, she never does it again. Then I might say something. But for now, Yay for Poo!

Practicing for Pullups!

Samantha was in her crib for a while this morning, having a bit of down time. She got pretty quiet at one point, and we thought that maybe she'd fallen asleep. Nope. We walked in to this:

She had pulled a pair of pants out of her laundry basket into her crib and had gotten them most of the way on! Granted, they were inside out and on top of another pair of pants, but MAN, were we impressed! Carey, if you're reading this, I think about the time you caught Chelsea in her crib with her pants on (LOL) all the time, and have been hoping against hope that Samantha would manage that one day! Next she'll be climbing out of her crib... Actually, I dreamed that she'd done that the other night.

Parley: A Crappy Victory

Gross title, but accurate, nonetheless.

Samantha is still a bit under the weather. Although she's acting pretty normal, she's still not really eating much. Each day I just hope the next day will be better. She told me she was hungry this morning when she woke up so she ate breakfast (a waffle with a small bottle of Pediasure for good measure), and she drank two cups of juice and ate some goldfish and a yogurt during the day, but not much else. She says she's just not hungry. The last time she went through something like this she suddenly became a very fussy eater. I'm hoping she doesn't get any fussier--I don't actually think that's possible. It's not like she doesn't like certain foods, but she just won't even give them a try. She'll clamp her mouth shut and shake her head and say "noooo." Even if it's something I'm absolutely sure she'd like! Anyway, I'm hoping her refusal of food will be a thing of the past tomorrow.

This evening as we were watching tv, Samantha suddenly stood up and walked half way across the living room. I asked her where she was going and she said, "parley." I asked her to clarify and she said it again. "Kitty?" I asked (she's started saying "kirley" for kitty--definitely a step in the right direction from "dodo," which had been her word for kitty from the time she was about 11 months old!) and she shook her head no and patted her bottom and said "poo poo." Duh, "potty" was what she was saying. I'd forgotten about that one. I followed her into the bathroom and put the Elmo potty ring on the toilet, took her pants off, and plopped her on the seat. Well, a couple of times this afternoon she's patted her bottom and said, "poo poo" today, so we'd toddle off to the bathroom and have no result other than an occasional pee. She pees on the potty most times when we put her on it, but she's never pooped. This time was different. Woo Hoo!!! For the very first time ever, she pooped on the potty!! Her stomach is still a bit unsettled so it was a bit "loose," which is probably the only reason we were able to do it (she's usually so constipated!), but she communicated her need and had a very crappy victory indeed!

Post-Christmas Sigh

I've been a bit lazy with my blog lately, mostly due to the hectic nature of the holidays in general. Today I am taking the day to sit back and sigh. A sigh of relief that some of the craziness has passed and a sigh of joy and thankfulness for my family. I've already decided that Samantha and I will stay in our jammies again today. I think this is becoming a regular weekend occurrence.

On Christmas Eve, as I prepared to leave work early, Steve called me and said that Samantha had begun to throw up about a half hour before and wouldn't stop. Here I was, reading everyone else's blogs where they said they had sick kids at home, and thinking, "nope, not me. Glad we're all healthy now!" I left immediately and by the time I got home, Samantha was sitting in the middle of the floor, covered in vomit and looking pretty pathetic, with Steve giving the receptionist at the pediatrician's office an earful for not getting one of the doctors to call us back. He was rightfully infuriated that he'd called them nearly an hour prior and all they'd said was that the doctor would call him back and that the doctor said it's a little stomach bug that'll pass and that it's going around with kids right now. Well, that's really not acceptable, when they would make that sort of diagnosis over the phone with absolutely no information to go on other than that our daughter was vomiting. Absolutely no more information than that. How could they possibly know that it was a stomach bug, especially given the time of year when kids are ingesting things they shouldn't, etc. They never even asked Steve any questions to find out more. Okay, so it was just a little stomach bug, but for parents of a child who never/rarely gets sick, this is a pretty big thing. She's feeling better now, but her appetite hasn't yet returned. She was okay to go over to my mom's for Christmas Day, at least.

I didn't get any decent Christmas Day pics of Samantha, unfortunately, since a)she wasn't feeling all that great and b)I just got too sidetracked and forgot to really take any! This year was particularly fun because she really enjoyed ripping the paper off the presents and seeing what was inside. We gave her a chalkboard/dry erase/magnetic easel since she now, finally, knows how to hold a crayon and a piece of chalk, and she received lots and lots and lots of books! Perfect! It seems that she's become much less interested in toys and just likes to surround herself with books. For fun last weekend I took her to Barnes & Noble so she could play. They do have a train table there, but she loses interest in that quite quickly in favor of pulling books off the shelves to sit and read. She can do that for hours. I had to drag her out of the store.

We had a very nice time over at my parents' house yesterday. As always, it was pretty decadent. I won't go into the overwhelming generosity of my mom and Ray here and now, but will leave it at that. And thanks to them and to my wonderful husband, I am now the proud owner of a new Nikon D40 digital SLR camera! I am very excited about this, and can't wait to really start using it! I took a few experimental shots yesterday, and am very pleased with the results. Here's one, not of Samantha, however. Maybe later on today if we get some sunshine I'll try to get some pics of her. It's pretty grey and dreary out so far. The pic at the top of the page is from my folks' house yesterday with my old camera.

I'll have to write more later, but Steve needs the computer to listen to a Boxing Day soccer game from England via web-radio. Typical.

That's My Girl!!

When Steve went to pick Samantha up from school yesterday, she was playing in the classroom with one of their ride-on toys. He watched as she went to climb on, slipped, and bumped her head on the handlebar. She cried for a moment, and went over to him for comfort, then he released her as she made her way back over to the toy. "Great", he thought..."she's going to go get back on! My girl doesn't give up!" He opened his mouth to say that to the teacher, when Samantha walked right up to the toy and gave it a good, swift KICK! Go, girrrrrrl!

We went to the DSANV holiday party on Saturday, for our 3rd year. This year was particularly special because Samantha wasn't walking last year, and because I know so many more people this year. There were so many families I wanted to have time to talk to, but was glad to speak to the ones I did. A few highlights were that Sammi's little friend, Matthew (Our Roads Traveled), is walking!!! It was so amazing to see him go! We were also so happy to see Bethany (Life with Bubba, Chicky & Nika) and her family and the amazing new addition to their family, Nika. We got to meet the Fergusons (Audrey & Stella's Playground - Megan, your girls are beautiful!), and were thrilled to see our new friends (and neighbors), the Lamjavs (The Lamjav Family) there with their gorgeous little girls. Samantha enjoyed dancing to the music and helping to play bongos, and, sadly, definitely gets her dancing skills from her mama. Let's hope time proves otherwise.

I have gone out and done things with friends on my own maybe three times in the last two and a half years, since Samantha was born. Lastnight Amy L. invited me over to her house with her friends to play Wii and enjoy the cookies baked as part of their cookie exchange. It wasn't until 8pm, so I didn't have to feel guilty about not getting to put Samantha to bed, and she only lives 4 blocks away, so there was no travel time involved. It was so nice to hang out with other women and have conversation in my down time--Amy's friends are really friendly and warm. And the cookies were amazing (Amy, I told you those cookies I brought home wouldn't go to Steve--actually, two of them didn't survive the 4 block journey home...) and I'd never played Wii before, let alone seen one up close. It was a heck of a workout, and a lot of fun--thanks for making me try it!

Faces of the CNF

I don't remember if I ever posted about this before, but I suspect that I haven't. Some time either last year or earlier this year I was contacted by someone from the Child Neurology Foundation who had seen my photos of Samantha on Flickr and who wanted to give their website a facelift (literally). The Foundation felt that the images on the site were too depressing and were looking to brighten it up a bit with more positive, happy imagery. They felt that some of my pics of Samantha were perfect. As you can see above, she's on the Gifting Policy page, but when you first enter the site's main page, the main photo is actually a set of rotating photos, and there's another pic of Sammi if you wait. All of the new images on the CNF website are wonderful, and definitely a far cry from the old site. I'm so glad we could be a part of this!

I'm watching It's a Wonderful Life right now. I think I am truly the only person in America, if not the world, who has not seen this before. For some reason I'm just not a big fan of old movies. Even though I was a film major at school and sat through a fair share of old films (and enjoyed them!), I don't seek them out. But I figure it's about time for me to finally be able to say I've seen it. And yes, I am paying attention to it--I'm typing during the 30,000 commercial breaks that the network is using to break up a 1 1/2 hour film and re-stitch it into a 3 hour epic. So much for getting to bed early tonight...

I leave you with a couple of photos of Sammi taking her wooden grasshopper for a walk. She carries it to the door of our apartment whenever she wants to go out for a walk in the hallway, and it's just priceless to see her trailing her little toy behind her. Yes, I did a lot of editing to the images, but the originals were pretty awful. :-)

Wordless Wednesday - Rudolph's Red-Nosed Sister

Another Day For Jammies Only

Originally uploaded by sammi's mom

Two weekends in a row now we have spend one of the two days home in our jammies. Yesterday was just too bitter cold and windy to go outside, and Samantha has come down with a cold. Amazing, though, how she can be as snotty as she is, sneezing, probably achy, etc., yet she was just so fun and cheerful all day! Way back when, in the pre-child days, staying home in jammies was very different--I could read, sleep, bake (hahaha)...but now it's spent trying to find things to entertain a 2 1/2 year old and following her around the apartment to try to keep her out of trouble. Oh, in a related bit of exciting developmental news, Samantha has gotten very good at blowing her own nose! We still have to use the bulb syringe on occasion, but she's able to get a lot of it out herself. She is fascinated by tissues--if you leave a box anywhere near her, she'll keep pulling tissues out and blowing her nose on each one before chucking it on the floor.

Saturday nearly turned out to be a jammies only day, but I felt guilty and wanted to get her out of the house. So I bundled her up like a snowman/child and we went into Old Town to see Santa arrive by boat on the Potomac. MAN, it was cold! But you really couldn't beat the atmosphere. As we got there it started snowing, and I
parked the stroller in front of a brass band playing Christmas carols. That kind of thing always gets me teary-eyed for some reason. I think it's that I sometimes feel overwhelmed with the fact that I'm able to share something so perfect with my Samantha. I can't remember if I ever mentioned this before, but when we found out she had Down syndrome when she was born, I had visions of a zombie-like woman-child holding my hand for the rest of my life, not appreciating things like music, art, fashion, travel, etc. And to have her bouncing in the stroller to the music in such a moving environment during my favorite (holiday) season of the year, just means so much to me.

I reconnected with an old friend on the phone last night. I hadn't spoken to her in 3 years, since I was about 6 months pregnant with Sammi. I told her, in all truthfulness, that Samantha is a wonderful gift and that I wouldn't have her any other way. We had a long, heartfelt conversation about how special life is, and without me even mentioning the crusade that so many parents of children with special needs are on, my friend said that there needs to be education among the doctors who give prenatal diagnoses to provide better facts to mothers-to-be about the capabilities of children with Down syndrome instead of putting pressure on them to terminate their pregancies. She described the Changing Lives program perfectly, without even knowing it existed! Okay, so how did my blog about staying in jammies get to this? Yikes.

A Different Sort of Heart Problem...

Yep, my baby is a heartbreaker. Samantha, officially 2 1/2 as of Sunday, is breaking hearts at school. Samantha and Juan, a little boy in her class, have been inseparable since the beginning of the school year. She says his name at home all the time (followed by the names of others at school), and runs to him when class starts every day. Now, I have not yet met this young man, but Steve has and he assures me his intentions are honorable. Sharing snacks and pulling hair, as well as sneaking the occasional kiss on the arm seem to be pretty worrisome to me, however.

Well, the drama has begun now that there's a new dude in class. His first day was Monday, and Samantha wanted absolutely nothing to do with him. Any attempts to get her to play with him were met with total resistance. Whenever Juan would go to play with him, Samantha, in a fit of jealousy, would run over to pull Juan away from him. The tide turned yesterday when Samantha decided that the new boy is more deserving of her attentions, and poor little Juan has been left out in the cold. While he stands off by himself, pouting, Samantha has been kissing the new boy and sharing toys with him!

I have not yet met this new young man, either, and neither Steve nor I know his name, so naturally we are very skeptical and will be keeping a very close eye on the situation. I will post more as things progress... That's my girl!

Here's another photo from Thanksgiving, beautifully enhanced in Photoshop by one of my Flickr friends.

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.

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 you...in 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!

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...

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...).

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.

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

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.

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.

Now Who (Besides Us) Would Refuse This Child Candy???

Today was a very busy day. I took a half-day off work to go to the National Zoo with Samantha's class. Now, when I talk about Samantha's class, I mean Samantha and Bella. A huge orange bus for two 2-year olds, me, Steve, Bella's mommy, Bella's nurse, the teacher and two aides. Yes, there were 7 adults (plus the bus driver) and two children. And we had a blast! What a fun time! Bella's nurse had never been to a zoo before, so it was almost as much fun showing her the exhibits and the animals as it was showing two rather disinterested, over-tired kids. We got to see the underside of a sleeping panda, a hippo's dental work (or lack/need of), orangutan excrement on the sidewalk (narrowly missing passersby as it fell to the ground from a sky cable to the delight of another school group, I might add), snakes, crocodiles, elephants, prairie dogs, lions and other assorted creatures. Samantha and Bella went in costume, and were just the cutest little kids in the park! Bella was Dorothy from the Wizard of Oz and Sammi, well, you can see Sammi's costume in the photos above.


After work, Samantha got to go trick-or-treating. Last year wasn't as much fun because we had to take her around in her stroller, which was pretty hard to get up and down driveways and doorsteps. This year she walked a bit and conned us into carrying her a bit. And, man, did she score! Little Miss Cutie Pie managed to get people to give her lots of candy, none of them any wiser to the fact that Sammi doesn't eat candy. I hear some of you gasping. Nope, Samantha has never eaten candy. Actually, the only real reason she doesn't is just because we haven't tried. She spent so long not chewing anything that we were always cautious about anything we gave her. So when she did start chewing, candy just never made it onto the menu. Not like we delude ourselves into thinking she'll never eat candy--of course she will. We're just not offering it up right now. Besides, the bulk of the candy she got in her little bucket was peanut-based, and we haven't introduced her to peanuts yet, either (more Reeses cups for me!!!). I think I heard kids should start on peanuts around age 3. And I'm dying to give her a peanut butter and jelly sandwich!!!


On a related note, Samantha had her second dentist appointment last week. She'd had her first right around her first birthday. The dentist was shocked that her teeth are so nice--she kept going on and on about how beautiful her teeth are, and the fact that they're all in, except her 3-year molars which are on their way in (her gums are swollen and Sammi's been grinding a bit lately and chewing her straws back there). I have absoutely no idea how that dentist managed to get her to open her mouth, not only long enough to inspect it, but long enough to clean her teeth, too! Shocking! My little girl keeps on amazing me daily.

The "Typical" Mistake

One of the first things new parents are told is not to compare their child with other children of the same age. Experienced parents, pediatricians and teachers will all say the same thing. Do Not Compare. Each Child Is Different. Each Child Develops Differently. This is especially true for parents of children with disabilities. When our children are born, we are only beginning the learning process. There's so much information to have to take in in such a short period of time, so many worries, so many plans to change and adjust (Holland, anyone?)...the list goes on. It's only natural to compare our children with "typically" developing children, as those are usually our only point of reference for how things "should" be.

Samantha has done very well for herself, since the time she was born. But, that being said, we have no other children to use as a reference and have very little exposure to other kids. This is a good thing! We did our research into Down syndrome and our blank slate outlook has helped us keep open minds about her development and the meeting of milestones. We celebrated when she would reach those milestones ahead of the posted averages.

So I guess I know why I'm still so surprised when I see her with "typical" children her age. Sammi and I had breakfast with my friend, Nicole, and her son, Ryan last week (Nicole, if you're reading this, please don't take this the wrong way--I'm just using you guys as a recent example!). Ryan and Samantha are only 4 1/2 months apart, but the difference is staggering. I left them that day feeling a bit sad, wondering if Samantha would ever speak in sentences, speak words that people other than myself and Steve could understand, be able to sit in the booth at a diner without falling off the bench onto the floor, talk about events that occurred in the past, talk about upcoming events with excitement, etc., etc., etc. When I see her with other kids, I wonder if the hugs and kisses she likes so much to give make her unusual. The "WTH!?!" reactions that the other kids have make me wonder if her affection is in part due to the extra chromosome (and a lack of boundaries), or if their reactions are just the normal reactions of kids to having a little stranger come up and hug and kiss them. Isn't hugging or kissing normal 2-year old behavior? I have no idea.

*sigh* I need a reality check once in a while, but I think the reality I need to get into my skull isn't the fact that my daughter is not developing at the same pace as "typical" kids; it's that I have to remember that Golden Rule about not comparing children. I know Samantha will do all of those things I was worrying about, but in her own time.

On another note, I LOVE and want Samantha's clothes, and LOVE to dress her. Sometimes I pick out her clothes the night before, just because it's fun.

Tomorrow or Saturday I'll post some pics of Sammi in her Haloween costume. :-)

Another Blog to Follow

I would like to take this moment to introduce you all to the blog of the Hill Family of Northwest Arkansas. The blog is written by Jay, the stay-at-home dad of 3-month old John, who has Down syndrome, and I'm hooked! His posts are insightful and beautifully written, and he has an incredibly wise view of his son's diagnosis for someone so new to this journey. Today's post is about unconditional love, something we all know so well. Jay, I hope you don't mind me highlighting your blog here!

Happy Birthday, Landon!

Nothing too much to say, but I love kids' birthday parties and wanted to share some photos from Sammi's friend, Landon's party yesterday (today's his actual birthday--Happy Birthday, Landon!). They played really well together, and tucked into some really, really yummy cupcakes from Georgetown Cupcake. Incidentally, Landon's daddy, CJ, waited in a line out the door and down the street to get those cupcakes!

To Combat the Cold

Great Idea!
Originally uploaded by sammi's mom

Our apartment building has this rule where they need to wait until the temperatures have dropped/risen consistently to certain temperatures for a certain number of days before they can activate the heat/air conditioner. Now, this happens twice a year, every year. And it invariably occurs that in the fall we'll have 80-something degree days for a week, the it suddenly drops to 60 (with 30 degree nights) on the weekend, when there's nobody to switch the system over and provide heat, and it invariably occurs that in the spring the temperature will go up to 80-something and they shut down the heat and turn on the air conditioning then the temperature suddenly drops down to 50 on the weekend and nobody around to switch it back to heat. Well, we're in one of those weekends now.

I left Sammi in her heaviest fleece jammies this morning, but was worried about her little hands turning to ice cubes when she drank her milk ith breakfast, so Steve had this wonderful idea to stick a beer cozy on her straw cup (I know this isn't the most brilliant photo, but it's all I've got for this). No, he doesn't drink Miller Lite. As a matter of fact, he doesn't even ever drink beer at home, but we've got lots of the freebies he's gathered from bars over time, and finally put one to good use. I highly recommend it--Sammi's hands were just the right temperature when she was done! Maybe I should submit this to Parents Magazine in their "It Worked For Me" section. On second thought, perhaps not.

On the same note, we finally broke down and decided to get a portable heater for her room for this sort of occasion. Even though they'll probably turn the heat on tomorrow, we'll still need it again next spring and we'll feel more comfortable knowing that Samantha will sleep comfortably. Steve ran out and got it from Target right before she went to bed tonight--otherwise I would have put her to bed with a onesie and tights under her fleece.

King of all Self-Advocates

Sammi with Chris Burke
Originally uploaded by sammi's mom

Today was the Down Syndrome Association of Northern Virginia's Buddy Walk. Seriously, the weather could not have been nicer or more of a carbon copy of last year's Buddy Walk--blue skies, cool, sunny... And Samantha was an absolute DOLL the whole time, going napless from morning until we got in the car after 3pm. She was full of hugs, smiles and more hugs today.

The calendar was a big hit, and became totally sold out (as I knew it would), and I'll need to order more from the printer on Monday. I haven't even purchased my own copy yet!

Our Buddy Walk featured Chris Burke as Grand Marshal, and he performed with his band. Chris Burke, as many of you know, played Corky in the hit TV show, "Life Goes On", many moons ago, and travels across the country and Canada on speaking engagements and performing. He is definitely an inspiration to many parents and self-advocates, and I was really pleased to be able to have Samantha's photo taken with him at the end of the day. In this photo, she was leaning in to hug him (I told you she was huggy today!). I was little sad that I was so distracted for much of the day and couldn't really hear or see Chris' band. I had several friends come to join our team, and wanted to be able to spend time with them since I rarely see them, but unfortunately I wasn't even really able to do much of that, either.

At the moment I am so completely exhausted that I'm not even sure if anything I've written makes any sense, so I'm off to bed before my eyes completely cross and my head drops onto the keyboard with my nose resting on the hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

An "Accident"-Prone Week

Dancing in the Barn With Daddy II
Originally uploaded by sammi's mom

I don't know what it is lately, whether it's the quality of this particular batch of diapers, us possibly giving Sammi more liquids than usual, or just some sort of gross neglect on our part, but we've had an awful lot of very wet, gotta-change-clothes-and-bedding incidents. Okay, so one of them was totally my fault when I took her out of her bath the other night, put her jammies on and completely forgot to put a diaper on her before bed...(c'mon, don't tell me none of you have ever done this!!?? Please?????)

The three of us drove up to Jersey this weekend to visit my folks on the farm. One of their "neighbors" (in the country, "neighbors" is a relative term, and generally involves a car trip) was having a bonfire party. We really couldn't have asked for a more perfect night--bright moon, twinkling stars, cold enough to wear jackets, but definitely not uncomfortable. We kept Sammi up way past her bedtime, but she had a great time! Of course, about mid-way through I set down my very delicious hamburger to pick her up and adjust her position in her chair and discovered that she was soaked. Completely soaked. Had to abandon the hamburger and send Steve scrambling back to our farm for a change of clothes. *sigh* But the party went on, and I made up for the lost burger with an excellent (and huge) piece of pineapple upside down cake. Not a problem.

Steve and Sammi danced to BeeGees, Tom Jones and Van Morrison in the barn, and you can see from the photo that Samantha thought it was fun.

Ah, but back to the topic--driving home to VA yesterday yielded yet another gotta-change-clothes accident. I just can't figure out what we're doing wrong. Poor little thing hates to be wet, but who can blame her?

Get It While It's Hot!!

Finally, the link for the 2009 DSANV calendar is up on the DSANV website. I had NO idea how complicated the logistics of selling this thing would be. It seems that it will work out best if I continue my involvement by handling the ordering/shipping process myself, too. It'll mean making multiple trips to the post office and waiting for reimbursement checks (for shipping costs), but it'll be worth it. And I have a need to be in control. :-) I'll keep this post short and sweet, and leave you all with the link for ordering. Happy Down Syndrome Awareness Month!

To order: http://www.dsanv.org/?q=node/114

Sleeping Beauty

Sleeping Beauty
Originally uploaded by sammi's mom

Samantha, sleeping at my company picnic today. She was very social, but kept trying to kiss and hug the other kids that were there. Actually, she nearly knocked down the CEO's daughter (who is the same age) while trying to hug her. Not the way to get a raise. :-)

True to form, Sammi wouldn't eat anything at the picnic. She's in this stage right now where nothing can pass through her lips except waffles, cookies, yogurt, chicken nuggets, goldfish and hummus sandwiches. Nothing else even gets a chance. She clamps her mouth shut, shakes her head, puts a very contrary little look on her face, and says, "nooooo." It's so exciting when we can get her to open her mouth long enough to put some new food in. Most of the time, though, she spits it right back out again. Occasionally, as with the spaghetti-o's I gave her the other day, she'll realize that she actually likes something. Thank goodness for daily vitamins...

A Big Thank You!!!

I didn't want to commit to the "31 for 21" blogging this month, as 31 posts for me during Down Syndrome Awareness Month would really be too much. I don't think I have 31 days worth of things to say, to be honest. :-) But here's 2 out of 3 days so far in the month of October.

In my last post I mentioned the DSANV calendar that has finally arrived. I'm still obsessing about how to sell it. The details are all getting too complicated (how to get the link up on the DSANV website, who the orders will come to, who will ship them out,etc.), and I think I'll just make it simple and do the orders myself. I'll contact the web guy today and make it happen so I can get it out to any of you who are interested!

Also, in my last post, I neglected to thank the wonderful photographers who had donated their time and efforts to the calendar project and created the gorgeous images that are featured. I know that only one or two of them possibly read this blog, but I definitely want to mention them all to my readers (you local folks may want to look them up!). Participating were:

Will Schermerhorn (who has been instrumental in getting the word out about Down syndrome awareness to the public--have any of you seen the PSA that the NDSS has put on their website and given to movie theaters across the country? Many fellow Ds bloggers have had it on their websites recently... Check out his website for lots of amazing things he's done that I'm sure you're already familiar with! www.blueberryshoes.com)

Susan Braswell of Susan Braswell Photography

Lisa Hill-Sutton of Lisa Julia Photography (an absolute doll to work with!)

Diana Adams of Studio Diana

Liz Vance of Oh Baby! Photography

Amanda Pagon of Apple Pie Photography

Rebecca Weiner of Rebecca S. Weiner Photography

Karen Becker of Karen Becker Photography

Ruthi David of Rdavid Photography

Adam Donohue of Red-letter Photography (who joined the group at the last minute and generously picked up the remaining sittings!)

Marie Windt of Marie Windt Photography (who has graciously agreed to photograph teams at our Buddy Walk in a few weeks!)

Thank you all, and if you're reading this, I'll be contacting you again in the new year to help usher in 2010!

The 2009 DSANV Calendar Heralds the Start of Down Syndrome Awareness Month!

For those of you who don't already know, October is Down Syndrome Awareness Month. Yes, it's also Breast Cancer Awareness Month and probably some other sort of awareness month, but for the moment, Down syndrome is what I'm most aware of and what I'd like more people to be aware of.

I finally finished working on the 2009 DSANV calendar, and the finished copies have been delivered to the DSANV office. It's really beautiful, and is an amazing awareness piece that I'm hoping will have a broader audience than just the local Down syndrome family community. The printer has asked permission (and permission was granted) to print up additional copies to use as samples whenever people inquire about their calendar-printing services. Since the calendar's more of a celebration and awareness item, this usage will increase the audience to include many people who never would have purchased the calendar in the first place, so having it given out as a sample is a very valuable service to our community.

Until after the Buddy Walk, the calendar will only be available for purchase in-person at the DSANV office (with checks or cash only) and at the Buddy Walk. After that, purchase will be available through the DSANV website (www.dsanv.org) via Paypal. Details will be posted there soon. Here's a small taste...

I'd love to post more, but you'll just have to get the calendar to see...!!!

By the way, to anyone who was wondering about the flash cards Samantha is using in the video in my previous post, we got them at Borders. You can google them, but don't use the term "flash cards"--try googling "Sesame Street Deluxe Activity Cards", and you'll find lots. I guess "flash cards" is just a bit too banal.