Thursday, December 24, 2009

Love Is...

...the Christmas ornament Samantha made in school. I'm not sure what part of it she was involved in (it certainly wasn't writing her name!), but who cares? I LOVE it. She proudly removes it from the tree and brings it to me now, then takes it back and carefully tries to put it back on (sometimes successfully). This is something I will treasure forever and box very carefully when this season of comfort, family and tradition ends.

Tuesday, December 15, 2009

Local Support (and a Hug From Santa)

This past Saturday was the Down Syndrome Association of Northern Virginia's annual holiday party. The support system in this area is pretty massive--there are, I believe, upwards of 600 members (not all active participants, but they're generally still in this area) and including parents and siblings, there had to be about 300+ people at the party. One of the most wonderful things about these community gatherings is the chance to see so many BEAUTIFUL, chromosomally-enhanced faces. I remember my trepidation attending my first event (Actually, it was the holiday party when Samantha was 6 months old). Steve, Samantha and I sat pretty much by ourselves, just taking it all in. But I remember being somewhat comforted by what we saw, beautiful people interacting and enjoying themselves. We knew we'd be okay. I'm one of the DSANV's Parent to Parent volunteers, which means that I occasionally speak to new parents of babies with Ds, offering them an ear to bend, a reference source for questions, and a safe haven to voice their stories, their fears and their feelings. I love knowing that I may be able to make a difference to them, and it's so gratifying to see some of these families at the gatherings throughout the year, getting to meet them and their children face-to-face. I'm always so heartened by the sight of them looking relaxed and well-adjusted, talking to other parents and making new friends. This is how it all begins, and how the community is built and grows...and grows...and grows...

But back to Saturday's event, the thing I was looking forward to the most this year was for Samantha to get to see Santa. Every year she does extremely well sitting with Santa and having her photo taken, but this year she's far more aware of who Santa is, and we've been building up the idea of Christmas with her. I was a little bit worried that some latent shyness would kick in when she was confronted by the jolly man in red, but lo and behold, she ran up to him and gave him the biggest, most genuine hug (see photo above)! After having her picture taken, she was reluctant to leave him, and continued trying to go to him afterwards, even when he had another child on his lap. Christmas is not a religious holiday for us. It's about family and tradition, and that warm feeling you get from making other people happy. Samantha's at an age now where tradition will begin to be remembered, and I want to be sure to make those indelible, happy childhood memories for her. I think we're off to a good start.

Monday, December 7, 2009

The Concept of Pain

Introducing the concept of pain or hurt to a young child is a difficult one. I can’t help wondering how many babies and children have something as simple as a headache or a sore throat and are unable to tell us. And we wonder why they’re crying. Having a child with a developmental delay compounds things a bit more. Two-way communication with the child takes much longer than for a typically developing child. Whereas a typical child can tell you what they’re doing or feeling or what they see when they’re two, a child with a delay can sometimes take twice as long, if not more. And to make matters worse, our kids with Down syndrome often have a higher tolerance for pain, which always worries me. Will she be able to recognize something crucial as important to tell mommy and daddy? To what extend do our children have a higher tolerance? While we don’t want our children to feel pain, we do want to know when there’s a potential problem so we can fix it.

This was all driven home for me several weeks back, after Samantha’s accident. I think I had mentioned already how we had a bit of a giggle (along with some frustration) when the doctors and nurses kept asking Samantha what hurts. I just kept picturing her jumping up, pointing to her elbow and saying, “Well, doc, I have this big bruise here, and my arthritis is acting up, and, well, it hurts when I inhale…” I’ve been talking to her more about her boo boos and about how they hurt, and I think she now gets it. She’s very sensitive about boo boos and will cry if she has a Band Aid (just knowing there’s a boo boo under it upsets her). When the Band Aid comes off, she says, “All done Band Aid” and is very relieved to be done with the whole mess, real or imagined. The other day while she was lying with her head on my chest while we watched cartoons, my stomach grumbled (rather loudly, I might add). She sat up, touched my stomach, and said, “tummy hurt!” She did that again, every time it made noise. Also, we’ve been trying to get her constipation under control (it’s gotten particularly bad after her visit to the hospital that day—we think she may have been particularly constipated because of all the drama and fear surrounding that day, but then she may have just become afraid to go as a result), and gave her some extra Miralax and some prune juice yesterday. I think it may have caused some cramping, because a couple of times she said “tummy hurt,” but not in reference to my rather boisterous hunger pangs this time. When I asked her, “Does your tummy hurt?” she responded yes. She then proceeded to make full use of our plumbing facilities, if you know what I mean (Sorry, I was determined not to have a poo post here).

This idea that she can tell us when something hurts is quite exciting to me. Not that I want anything to hurt, but at least I can know how best to help her when she needs it. As it is absolutely not a certainty that she truly understands this, I’d love to hear how some of you have taught your children how to identify and communicate their discomfort. By the way, one of these days I'll learn how to write shorter, more to-the-point posts, rather than rambling on and on like this. I guess that's what I get when I post less than once a week.

Tuesday, November 24, 2009

Ni-Hao, Kitty

After much pressure from Sammi's school, and us finally getting off our butts to do it, we got her a new, full-size backpack. I think a year ago, when we bought her her first backpack, there was no way she could carry a regular one. The little one knocked her over when she wore it as it was! Now my little girl is growing up (and up, and up, and a little bit out...) and it was time. We had to cram her notebook in the small one, and now that she rides the bus, she often has art projects or her wet clothes when she's had an accident to bring home with her. I've been holding out for a Ni-Hao Kai lan backpack, but can't find one anywhere, even though Target, Walmart and ToysRUs seem to be advertising them. I saw a few online, but wasn't prepared to spend $23 plus shipping. So I settled for an old, classic favorite, Hello Kitty. Samantha doesn't really have any experience with Hello Kitty, but I have very fond memories of being in a department store when I was a child (no more than 7 years old) and getting my parents to buy me some sort of Hello Kitty notebook or pen set or something that they had on a shelf display there. I had always asserted that I was reincarnated from a cat when I was little, as evidenced by the fact that I loved cats and that I was a Leo (albeit on the cusp, and only a Leo according to Cosmopolitan magazine and a Cancer by most others). When I was a bit older I lived in Okinawa for a year, and was astounded by the amount of Hello Kitty stuff there was everywhere! I quickly abandoned my childhood love in favor of "Namenayo" (just doesn't look right in English letters...), these real, live kittens that are dressed up in cute little outfits and posed for photographs, doing everyday things, like going to school, dancing, eating at a restaurant. Very funny, very cute, probably not so popular with the animal rights organizations (hey, I was only a kid and thought it was great!)... Apparently the Japanese are still into them.

Anyway, I digress. Hello Kitty has just recently celebrated its 35 year anniversary. It must've just come out when I saw it for the first time in that department store way-back-when, and I'm happy that my daughter can enjoy it as well. When I gave her the backpack, I told her it was Hello Kitty, but she said, "Ni-hao Kitty" instead. Every time I try to correct her and say it's "Hello Kitty," she says "Ni-hao Kitty." And it's not like she can't say "hello," because she does it all the time. Maybe she's started to think in Mandarin? On a whim, this morning as she was watching Sesame Street and eating her breakfast, I asked her, out of the blue, to say "1, 2, 3" in Chinese. Without missing a beat, and speaking with her mouth full of waffle, she complied. It really does show how malleable the brains of young children are, and how able they are to learn other languages.

Samantha's teachers, practicing good positive reinforcement, sent us an e-mail within the hour of her arrival at school that first day with the new backpack. They expressed how thrilled they were with the new bag, and how cute it is. Yeah, yeah, we get the hint!!! By the way, the 2nd photo is of Samantha ringing the doorbell. She loves to do that every time she comes in or goes out. Calls it "ding dong."

Friday, November 20, 2009

Flowers for Algernon

I read a very interesting article yesterday, posted in Wednesday’s Los Angeles Times newspaper. In a nutshell, it documents research currently being conducted to develop a “cure” for Down syndrome. Setting the fundamental intent of the article aside for a moment, I need first to harp on a few little details that are grating on me like nails on a chalkboard (or like Samantha grinding her teeth!). I thought reporters were supposed to do their research first before writing an article (especially for such a highly circulated publication!). The term “cure,” used several times in the writing, is tremendously inaccurate. Down syndrome is caused by an extra copy of the 21st chromosome which is present in ALL of the cells (unless the person has mosaic Down syndrome, where only some of the cells have the extra copy). You can’t “cure” that. Now I’d swear that the first time I read the article, they referred to people who “suffer” from Down syndrome (as many articles tend to do, which drives me crazy), but now, upon re-reading, I don’t see any reference to that. Could they have changed the wording somewhere along the way? Maybe I just wanted to see that so I could be extra-annoyed. Just as an FYI, my daughter does not suffer in any way. While I would have preferred it if she had been born without a heart defect that she needed surgery to repair, she’s certainly not suffering! Finally, the article calls Down syndrome a “disease.” Uh, correct me if I’m wrong, but genetic issues are not diseases. I feel like that wording perpetuates the fears of the ignorant that they can actually “catch” Down syndrome. At least People First language was firmly in place throughout the article.

Now, the intent of the article was to explain that research has shown that the brains of people with Ds are unable to make norepinephrine, a hormone and neurotransmitter. The drugs Droxidopa and Xamoterol both convert to norepinephrine in the brain, and in mouse trials, mice with a replicated version of Down syndrome responded with increased, “normal” cognitive functioning when given Xamoterol. However, the effects were short-lived, and the mice returned to their previous state quickly.

While I do find this research very interesting, as soon as I read this, I was reminded of Flowers for Algernon, a book by Daniel Keyes written in 1958. I read it for a class in 9th grade, and was immediately both haunted and obsessed by this bittersweet tragedy about Charlie, a man with a cognitive disability who becomes the first human to undergo an experimental surgery to increase his intelligence artificially. A mouse named Algernon was the first successful recipient. Throughout the story, Charlie, placed under a virtual microscope by doctors and researchers, begins to show all of the positive signs of an increased mental capacity. He eventually becomes a genius, eclipsing the intelligence of those around him, and continuing his own research on the procedure, only to discover that there is a flaw in the research, and that (in the fictional context of the book), “Artificially-induced intelligence deteriorates at a rate of time directly proportional to the quantity of the increase.” Algernon deteriorates, becomes unstable, and dies. Charlie begins to deteriorate as well, evident to the reader through his own words in progress reports he wrote throughout the trial.

I cried at the end of this book, and still get teary thinking about it. It posed, at the time, fictional ethical and personal dilemmas that seem to be now coming to fruition. Would you subject someone you love for who they are and the way they are to a treatment that would change them, possibly only temporarily? Would you really want to know what they would be like if they had a higher intelligence? Would you be prepared for personality changes in this person? While it all sounds very tempting, I know that my answer would be an undeniable “no.” I have sometimes tried to think about what it would be like if my daughter didn’t have Down syndrome. It is always a brief thought that gets shut down and put out of my mind immediately. I can’t imagine what she would be like, and I honestly don’t want to. She is Samantha. She is my beautiful, smart, funny, precocious, stubborn, amazing daughter, just as she is. Anyone different in her place would be a stranger to me. Would I change some of the physical issues that affect many people with Ds? Certainly. I would love to remove heart defects and thyroid problems, celiac disease and early-onset dementia, leukemia and atlantoaxial instability. The list could go on. I would also love to remove some of the challenges society places in the way of people with disabilities, and create more awareness. But would I change her? Nope. Not even for a day.

Wednesday, November 11, 2009

H1N1, a Dresser, 3 Paramedics, 5 Hours and about 100 More Gray Hairs

The week just started off badly. Samantha fell asleep on the 10-minute bus ride home from school on Friday, carrying a report from her teachers that she didn’t participate at all that day, an unheard of occurrence. After a confirmed fever of 101 and a visit to the doctor, it looked pretty likely that she had H1N1. We never got a chance to get her vaccinated, something that I was on the fence about but would have liked to have done anyway, if it would protect her from illness. I vacillated back and forth about the vaccination (I had already gotten her the seasonal flu vaccine), and was thrilled to hear that it would be offered in her school. The day before the school offering, a notice came home to parents that due to a lack of supply, the clinic was cancelled. I wasn’t sure how to feel about that, but it was likely that she may have already been infected by that time. The pediatrician put her on Tamiflu and told us good luck trying to find it, as supply was getting light. Steve found it on the first try, at CVS. The Tamiflu worked well, minimizing her symptoms and keeping her happy and fever-free. On Saturday, however, we got a little taste of the odd side-effects of the drug and now know why they hesitate to give it to older children or young adults – Sammi seemed to be hallucinating, giggling in her own little euphoria and saying things that didn’t make sense (well, things that made less sense than usual, at least!). She was staggering around some, like she was drunk. Apparently this is common, and has resulted in some attempted suicides (euphoria, sense of invincibility) among teens and young adults.

Due to the illness, we were keeping her home from school until she finished her doses of the meds and we could establish that she was fever-free without medicine. On Tuesday morning, moments before I went into her room to get her up, I heard one of the most frightening sounds of my life—a tremendous crash, followed by hysterical screaming. I ran into Samantha’s room and found her pinned underneath her large, full, heavy dresser, with only her head and part of her right leg free. I lifted it off of her and Steve and I kept her still and tried to calm her down while I called 911. The paramedics arrived in about 10 minutes (I’m not exactly sure what took them so long, as the firehouse is quite close by), and after assessing her for breaks and any obvious internal bleeding, loaded her into a neck brace and onto a back board for transport to the hospital. I rode with her, while Steve followed along in the car. Samantha calmed down a bit, holding onto her blankie for dear life. The three paramedics were really amazing with her, and one, in particular, seemed to know all the right things to say to her to keep her calm. She even waved to him and said hi. I think having two young children of his own helped a lot. At the hospital, they hooked her up to fluids then took her for a CT scan of her head and neck, which came back normal. Steve stayed with her for that, and she did amazingly well. Then she dozed for a while until she was removed from the back board and taken for another CT scan, this time of the rest of her body, to look for tissue and organ damage or internal bleeding. Again, nothing. After that, Samantha decided that she was done and wanted to play, so she played doctor with her stuffed pink rhino, Lulu. Steve helped her put the neck brace on Lulu, and Samantha pretended her detatched pulse-ox lead was a stethoscope, listening to Lulu's heart, looking in her ears, and checking her eyes. After five hours in the hospital, we were finally cleared to go home. I’m still in absolute awe that a) she wasn’t killed, b) that her bones and internal organs weren’t crushed and c) that she had absolutely NO damage whatsoever (apart from a little bump on her head where a small lamp had hit her on the way down). Not even a bruise. It really was miraculous.

A few funny moments occurred when people would try to ask Samantha questions. “Samantha, can you please straighten your arm out for me?” (requested as Samantha was screaming from having just been stuck with a needle for an IV) “Samantha, where does it hurt?” Steve and I would just look at each other and sigh, then explaining patiently that she doesn’t understand everything, and isn’t going to respond accurately, even if she does. “Does this hurt?” “Yessss!” (answered with a big smile). Hahahahahaha. To be honest, with all the sheltering we’ve done with her, I don’t really think she understands “hurt.” Although it would be great if she could tell us that the reason she’s cranky one day was because she had a hell of a headache and it really HURT. Great! I’ll get the Tylenol and fix it up right away! Problem solved.

Child-proofing is the big lesson to be had from this. After I posted on Facebook about what happened, I received many, many responses from people who said this was the push they needed to start anchoring their children’s dressers and bookcases. I’m so glad this has raised some awareness for us and for so many others. We’ve now removed the dresser from her room and bolted it down where it now resides in her closet (which is now protected by a child-proof lock that is also practically parent-proof as well). We’re going through the house carefully to anchor other large pieces of furniture as precautions. As she gets older and more curious, and as we begin to afford her a little bit more freedom, we want to be sure there will be no more surprises.

Friday, November 6, 2009

Eighteen Years

Wow, it’s been 18 years already since the boy of my dreams, an English glam-rocker boy with long, black hair, and I said “I do.” The time has really flown. It’s hard to believe that we’ve been married longer than I was alive before I went to college (yikes!) and, as I had stated last year on this very day, the same amount of time as the internet itself. How things have changed (including us!). Marriage is never an easy, smooth ride all the way through, and if people are set on believing that, then they’re the reason that the divorce statistics are so high. We learned early on that we have to take the good with the bad, and work through things. We have to grow with each other, and admit and accept our shortcomings, both about each other and about ourselves. (Of course, I’m sure Steve would say I haven’t done that yet!) We have to acknowledge our differences from each other, and realize that we are not the same person. Those are what make our relationship work, and what make it continue to be interesting, every day. Adding our little princess, Samantha, to the mix has made our lives even richer, and I wouldn’t have things any other way. I know I’m not the easiest person to live with, but Steve’s an incredible, devoted dad and husband. Happy anniversary, Steve. I love you!

Tuesday, November 3, 2009

Development Updates

This is going to be one of those blog posts where I feel conflicted about how much information to give. I had initially started this blog as a place to celebrate my daughter and track her achievements, solicit advice from my peers and open a window into our lives for those friends and family members who don’t live nearby. I viewed it as a “safe place” to do those things, without feeling like I was bragging about Samantha’s accomplishments when I was just simply excited about them. The more readers I have, the more sensitive I become, and I really, really, really don’t want to put anyone off, and certainly hope that some of the things I talk about that we work on with Samantha will help or inspire others who may be going through similar things. That being said, for all the things I’m so proud of, there are areas of her development that frustrate me, which I also won’t hesitate to mention. Oh, and I also don’t want to bore anyone to tears, either… You guys are all really valuable to me--I’d love any feedback!

So now for some updates on Samantha’s development, since I haven’t really posted anything lately.

Sammi has been working very hard on sentences and sentence structure lately. In her private speech therapy, the therapist lets her pick out what toys she wants to play with, then they talk about the toys and what they’re doing. I guess I was always so wrapped up in having Samantha learn the words with correct pronunciation, I never really thought as much about really working on the exact sentences themselves. The therapist gave her a paper with four photos of people on it, and Samantha is encouraged to tell what the people are doing in each photo, such as “Riding a bike,” “Clapping hands,” “Dancing” and “Kicking a ball.” She’s able to do them easily. It’s odd, but Samantha has somehow understood the present participle (“-ing” words, mainly) for some time now (at least 6 months, if not longer), without having been taught this important principle, probably initially through mimicry of what we say (“oh, it’s raining!” or “the baby’s crying.”). She’s never gotten it confused with the use of regular verbs, and will issue single-word commands correctly (“Go!”, “Stay!”, “Cry!”). I’ve been quietly amazed by that, but now am more publicly amazed as she begins to add in the useful and important words such as “and,” “is” and “the” to complete her sentences. She likes to skip over those in favor of what the therapist calls the “meat words.” I know I’ve gone on about this before, and do apologize for sounding like a broken record, but when I look back to 6 months ago, she was barely stringing together multi-word sentences, and was still skipping the first letters of many words.

Gross motor skills are another point altogether. I think the fact that we’re somewhat over-protective parents (hey, she’s our only child—what can we say?), constantly telling her to slow down, don’t run, be careful, etc. We don’t quite trust her not to let go while on a swing, or to take the stairs on her own, or even to run without falling down. I know that for certain things we just need to give her a little bit of leeway to explore and discover her limitations on her own, and at 3 ½ years old, she definitely wants to do just that. She likes to control her environment. But we also need to encourage her to be more active. She’s a big girl, and just going to get bigger if we’re not careful, if you know what I mean. When we take her outside to play, she spends only a minute or two out there before heading for the stairs to go back inside (“Home!” she’ll say). At the playground she is incredibly tentative on the equipment, shying away from trying to climb ladders, etc. Just like her mommy, I think. I was never one to take risks, and have memories of me at 6 years old throwing a hissy fit at having to load onto the ski lift and ski down the bunny slopes, even completely attached to my instructors. But I have to remember, I did get over that, eventually. Sammi also doesn’t know how to bounce from her knees. I know she’d absolutely love it if she tried it, but I think this is a time when we may need to modify her IEP to address it. Her new orthotics have been helpful, and she seems to have more stability through her feet and ankles. Hopefully she can continue to progress with them.

I really have rambled a lot in this post. Maybe I’m just making up for some lost time. I had planned last year on doing the 31 for 21 blogging for October being Down Syndrome Awareness Month, but never managed to pull it off. There is always next year.

Sunday, October 18, 2009

Blogging Funk and Other Stuff

I guess I've been in a bit of a blogging funk lately. No real motivation to blog, which certainly doesn't mean that there hasn't been stuff to say. I know we all go through it at some point. Hmmm...October 4th was the last time I posted, and even then I had posted a photo that was already more than a week old. The time is passing very quickly, and I guess I'm just feeling a bit out of the loop lately, personally. Can't really put my finger on it, exactly. Blogging is a good thing, and can be cathartic, but it can also pose some serious logistical problems, such as when the things you want to blog about you can't really blog about because of the people who read it. I'm not really into making things controversial, scandalous or full of self-pity. Not like I need to do any of that right now, but I'm just putting it out there...

Since my last post, my sister in law's husband passed away, and Steve drove up to Michigan for the week to be with her. Actually, he drove up, then drove back for a day to sort out some work stuff and to allow me to go back to work for a day, then drove back again. He's on his way home again now. It's kind of funny saying he's driving to and from Michigan, like it's some sort of commuter route, especially since he didn't get his driver's license until Samantha was born and never wanted to drive, even over the 15 years we'd been married by then. Now he says he enjoys it. At any rate, back to the purpose of his trip, Scott was only 47. A very tragic and unexpected departure, and my thoughts are with his family and most certainly with my SIL.

Also, since my last posting, Samantha fell and got one heck of a shiner.
This was her first big injury, as we tend to treat her with kid gloves and wrap her in cotton balls at every opportunity. LOL She handled it pretty well, getting upset for a few days every time anyone would talk about it in front of her or any time she saw it in the mirror. Which was a real challenge, every time she washed her hands at the bathroom sink. At one point I even put her hair over it so she wouldn't see it. It actually worked! I wasn't sure what the teachers at school would make of it, so I sent a little note to school in her backpack, explaining. I guess these days CPS could show up at your door any time! I didn't get any kind of a note back from them, which was a bit disconcerting!

Our Buddy Walk for the Down Syndrome of Northern Virginia was yesterday.
Of course it happened to be on one of the most cold, rainy (seriously, it did not stop, even for a minute), miserable days of the year, but the turnout was decent, and I'm very glad I went, even having to do it without Steve. Two of my work friends, Donna and Nejet, showed up (one other was a no-show, without even a response to my multiple e-mails from the day before to confirm, but that's a whole other story for a whole other blog post) as well as my dear friend, Crystle along with her mother, my friend Rob of Abby Monroe is HERE (whom I had never met, but knew through Flickr, this blog, and Facebook) and his wife, Anny, and adorable 2-year old daughter, Abby (sporting her own recently-obtained, staircase-battling black eye in sympathy of Samantha's), my parents, and the Lamjav Family, who will have their own Buddy Walk team next year, but we were thrilled that they could join us this year! We were thrilled to have had a really wonderful team, and I give my thanks to each of them for coming out and braving the elements to support us! Samantha was pretty miserable when it came time to do the "walk," and made me carry her. Now this is certainly no easy feat, especially when the venue was soooo much bigger than last year's, and she's rediculously heavy. Especially heavy when I realized, halfway through it, that she was asleep!!! Through me staggering under her weight and the rain, she somehow found it appropriate to completely relax. Ugh. It's going to take a whole lot of visits to the gym to fix the damage and loosen up those muscles again.

Many, many thanks to Michelle and Brian (Our Roads Traveled), Linda (Lila's Miracle Life), Bethany (Life With Bubba, Chicky & Nika), Megan (Audrey & Stella's Playground) and everyone else who tirelessly put in so much work to bring us the Buddy Walk again this year.

I'm not sure when I'll post again, but hopefully I won't let so much time elapse next time. We'll see how I feel.

Saturday, October 3, 2009


I hope the parents of Sammi's friends don't mind these pics (if you do, please let me know and I'll take this post down!)--they were just too adorable to resist!

Wednesday, September 30, 2009

Scenes from the Bathtub

Fade in…Samantha sitting happily in her bubble bath lastnight, me trying to think of ways to bribe her to get out, but entertaining her in the meantime…

Me: Do you want to sing a song?
Samantha: Yes!
Me: What song do you want to sing?
Samantha: A-Donald.
Me: Okay! (singing) Old Mac Donald had a farm…
Samantha: (singing along) ai ee ai yooooo
Me: And on his farm he had a…
Samantha: No.
Me: No more Old Mac Donald?
Samantha: No a-Donald. Pat.
Me: Pat?
Samantha: (looks over at the vanity) Pat!
Me: I’m sorry, honey, I really don’t know what you’re saying.
Samantha: Pat! (makes frustrated whiney sounds while still looking over at the vanity)
Me: I’m so sorry, baby. Say it again?
Samantha: Pat! (looks like she’s got an idea) Blue yellow red!
Me: Ohhhhh! Paint!!!!
Samantha: (looks very, very pleased) Yes!

I reach into the vanity drawer and pull out her 3-color bath paint set with tubes of blue, yellow and red. Life is good.

Fade out...

Wednesday, September 23, 2009

It's Here! Get It While It's Hot!

Yes, you heard correctly...the 2010 DSANV calendar, "The Eyes are the Mirrors..." is now here! I can't believe it's been a whole year already since I completed the 2009 calendar, and the last 6 months of working on this one went by so quickly. Once again, I had wonderful photographers to work with, photographing some truly beautiful and amazing people (see the lovely cover girl, Stella, from Audrey and Stella's Playground). Our models, or ambassadors, if you like, hopefully will help to raise awareness of the beauty, intellect, joy and complexity of people with Down syndrome. Of course the majority of people who purchase or view this calendar are people whose lives have already been touched by Ds in some way, but I know that changing minds and removing stereotypes of even just one person that would otherwise have no connection to Ds, is worth sooooo much.

The calendar can be purchased for $10.00 plus shipping at (the link is partway down the home page, and may still be for the 2009 calendar--we're working on an update, but you can still use it to order!). This will make a great holiday present for your OBs and pediatricians, btw. My OB has our 2009 calendar hanging in her office now. That definitely makes me feel so supported, and gives me so much hope that others will see it and know that the trip to Holland is a good one.

Wordless Wednesday: Falling In

Tuesday, September 15, 2009

Wordless Wednesday - Let the Sun Shine In

Ice Cream Party!

A few months ago, I entered, and won, a contest I found on the internet from Edy's Ice Cream. The grand prize, of which there were 1,500, was a neighborhood ice cream party, including the ice cream, scoops, apron, table cloths, cups, spoons, signs, etc. (all the stuff you'd need). To enter the contest, I had to write a short essay explaining why I thought I and my neighborhood should win. I'm kicking myself right now for not having made a copy, since I had to enter through the company's website. They didn't send a copy back, either, although I may try to contact them for it. The gist of what I said, however, was that we'd recently moved to this neighborhood after purchasing our first house. We wanted to move somewhere safe and somewhere we felt our daughter with Down syndrome could grow up in a close, caring community where people would keep an eye out for her. I mentioned that while we thought we had found just such a place, I wanted the opportunity to show my gratitude and to meet more of the neighbors that we hadn't yet crossed paths with.

The day was absolutely beautiful. You couldn't really ask for more from the weather, and a decent-sized group of our neighbors (as well as my mother and step-father, pictured in the first two photos) turned out for the festivities and sugar-overload. I met a few for the first time, but for the most part, it was people we see at the other gatherings on the street. I do wish that some of the other folks had come out, but maybe one day they will. To me, a neighborhood is a place where everyone knows each other, where children play together. It's kind of funny that only half of the street seems to gather with any regularity, while the other half does its own thing. The street isn't very big--it's comprised of just 5 rows of townhouses (5-8 houses in each row). I live right on the border of the active and the inactive. Maybe this gives me a bit of an advantage and an opportunity to get to know both sides at some point.

I love that there are so many children on our street, and although most of them are considerably older than Samantha, there are still a few little ones that she'll get to know better as they get the chance to grow up together. I'm very happy about that.

Anyway, a BIG thanks to Edy's for the indulgence and a fun time had by all. Now I have to make sure I get back to the gym tomorrow morning to work off the daily dose of leftover ice cream (at least it's the Slow Churned, which is 1/2 the fat and 1/3 fewer calories than regular ice cream) I've been allowing myself every night before bed...

Tuesday, September 8, 2009

1st Day Back

1st Day Back
Originally uploaded by sammi's mom
Well, school started back up today, and for the first time we put Samantha on the bus. For the last two days, whenever I would mention taking the bus to school, Sammi would say, "yellow bus." So there were really no surprises when it arrived. She was fine getting settled into her seat, and Steve followed the bus to school so he could ensure she wasn't having any kind of meltdown (we weren't expecting one) and to drop off some school supplies that we couldn't very well send with her. He reported back that she looked a little dazed, but fine, when she got off the bus, and that she marched straight to her classroom and sat down with some books. Yeah, she'll be just fine! On a photographic note, the pics I took this morning mostly came out pretty bad. In addition to the ordinary lack of sunshine at that early hour, it was raining and completely dreary. Since I hate to use flash, I ended up with lots of blur. I posted a few usable ones on my flickr site, if any of you are interested.

Saturday, September 5, 2009

Welcome Home, Mommy!

I just LOVE that this is what greeted me when I got home from work yesterday. Samantha's definitely all better after her little stomach bug that plagued her for more than a week, and not a moment too soon since school starts on Tuesday.

I'm sad that the summer's winding down, although I do love the weather at this time of year. I may have said this before, on the first day of school last year, but I remember when I was a kid the weather was always crisp and clear on the first day of school. I could never figure out why the change was so sudden and coincided so perfectly, but I loved that I could start to wear my new back-to-school clothes that my grandmother diligently took me shopping for every year. Many of the school systems in the area started back last Monday, when the weather was at its most surprisingly cool and crisp. I think this Tuesday, when our county returns, it'll be a bit warmer, but still lovely nonetheless.

Open house at Samantha's school was yesterday, so we were able to go and see some familiar faces and meet some new ones. Sammi's little buddy (okay, betrothed--hehehe), Matty, will be in her class this year, which is especially exciting! The teacher said she'll be one of the peer models this year as one of the older kids. Peer model? Really? How cool! And seeing her in the class with some of the other kids, I can see she's come such an amazingly long way (see my post from a month or two ago) since she started this school thing last year. She's no longer the youngest and least-able. She exhibits good behavior in class, and joins in with the activities. This will be an amazing year for her, I am certain. She'll also be taking the bus for the first time. The driver did a dry run last week, and Steve stopped to talk to him for a few minutes. She'll be picked up at approximately 7:22 for a 7:50 school start time. Could be worse. Although if we drive, she would leave at 7:40. We'll see how it works out timing-wise and play it by ear. When she starts Kindergarten she'll be able to walk out the back door and into her school. :-)

Two more picnics (yes, both on the same day, although they're staggered by a few hours and only a 1/2 mile between them) on Monday to cap off the summer and to see what autumn is like in our new house and new neighborhood. Anybody have any ideas for Sammi for Halloween? It can't be expensive and it can't be difficult to pull together. We're last-minute types, so any early planning is a bonus...