I have a quiet house. Charles is out having some "Me" time, which I hope he spends wisely and yet not wisely at all...he needs some time to decompress. Christian is taking a nap today- actually sleeping instead of just playing in his room during the time which we loosely call quiet/nap time. Elijah has just conked out for a nap and although I could easily sleep, I think the time has come for me to refuel and rejuvenate in the form of writing. There is just something about the stream of consciousness through writing that keeps the feelings & thoughts in my head from hovering too long. Unless they are good thoughts...in that case, I invite them to pull up a chair and stay as long as possible. And I have a few of those good thoughts these days. I have huge concerns, and I will get to those in a moment, but what is really remarkable to me is that I find myself feeling so...contented. Frequently. Grateful, contented, blessed and happy. Maybe it's still residual hormones, but I think it has more to do with one little angel baby, my little Elijah. I love the way his little body slumps on mine when he's so comfy and tired that he just drops right off to sleep. How when I first walk into the room, or when he first wakes up to see me, he breaks into a smile. And even though, Christian is at the age that fights for control and power and challenges me at every turn, he loves to help and to play and to dance and all of those things that I dreamt about doing when I dreamt of having a family. More than all of those wonderful little things, I am learning to appreciate and even be swept up in the uncertainty...the adventure of life. That one day you think you'll be single forever, but then poof! You're not. That one day you'll decide to have a baby and your whole world changes in ways you never imagined and couldn't have predicted, where you'd never, ever, not for one real second trade back. Not even when your baby ends up with an extra chromosome. Nope, I'd never trade back...because that would mean no Elijah and I really, really, really love Elijah.
I haven't had much time to write in the last week and maybe I'm even feeling a bit of a writer's block because so much has happened that I sometimes don't know where to start and what to say. I find myself starting on one task, then midstream switching to something else, then switching again, then thinking, "What was I supposed to be doing??" One thing that has been taking up my mind space is about Christian's speech. I mentioned in a previous post about how the social worker who came to evaluate Elijah, mentioned that Christian should be more articulate by his age. After he left, I immediately got on the phone with a good friend who is a teacher, but more importantly, knows Christian and sees him frequently. Her opinion was that there is nothing wrong. So I started feeling better...but then, I mentioned it to my Mom (who taught preschool for 14 years- even though she has been "retired" about 12 years) and she said that she thought his speech should be clearer too. Great! I said, "Why didn't you say anything??!!" And she replied that she thought I had enough on my plate already and didn't want me worrying about something that would most likely work itself out. If I had a dollar for every time I've heard that exact statement recently, we would have no financial problems at all. I finally looked a friend in the eye yesterday and said, "Promise me one thing: that no matter what, you do not skip telling me something because you think I have too much going on". But I digress...I also happened to speak to Christian's preschool teacher, who we've been with in a Mommy and Me program with for the last 2 years. I told her what the social worker said, and she admitted that she had been concerned that there was something up with Christian's speech (But didn't want to tell me because she thought I had too much going on! See the pattern here?) After that conversation, I got really freaked out because she seemed concerned about possible speech processing problems more so than articulation. That sounds way scarier to me than mispronouncing Yittel (Little). That sounds "Grey's Anatomy" scary: Patient wakes up from brain surgery saying, "Cat done tunnel frog over the ant hill." Clearly, something has gone terribly wrong in the surgery and that is why we tune in every week... So. All of these opinions started the freaked out and obsessive phase. I find myself testing Christian in different ways now. Can he identify colors when asked or only when I tell him to point to "pink"? Can he physically pronounce an "L" or his he just being lazy? Can he look at a picture and tell me what's happening in the picture or will he just point out what the pictures are of? It's mind boggling...and it's been too much. I can tell that it's getting to Christian. I was drilling him so much on a P word the other day, that at one point in the car he pointed and said "Look Mommy! A Cat!" When I said, "What Christian? (Because I just didn't hear him) He said, "A Cat. Pa-Pa-Pa (The P sound) Pa-Cat." And there are other things too- I can tell he senses my frustration and concern and it's making him feel pressured. I don't want that for him. I really don't want him to be feeling pressure from me, even if there really is something to be concerned about. We don't even really know if there is any cause for concern yet. We are going to meet with a Speech Therapist on August 6th, so I'm hoping that will shed a little more light on the situation. Now I need to be done with this topic. I'm driving myself crazy and I think my friends are done with this topic also...or at least done with hearing me obsess about it...
On the Elijah home front, things are moving along. As I like to say, "He's just doin' his baby thang." ...Although tonight when I got creative with a Bobby Flay recipe that came out way too spicy (and ate it anyway) I think I may have given Eli a bad case of gas...:( Poor guy has been fussing all night and he never fusses unless there is a specific reason (Hungry. Tired. Wet.) But, he's been doing great otherwise. He has rolled over from belly to back about 4 times. I pointed this out to our Pediatrician who immediately said, "Well, that was an accident." Yes. He's right. It was. But, that's how it starts, right? Elijah is definitely focusing more and tracking objects with his eyes, which I was really worried about because it seemed to take especially long for him to do that. He has also let out a few laughs recently! They are so precious and I can't wait to hear more. So far, bouncing seems to be the biggest precursor to a laugh, but I'm enjoying the exploration to see what causes them. He has also found his hands and I think he's taken an interest in something he suspects might be there...his feet! He sort of throws them up over his head, like...There they are!....Nope....yup- there they are! This morning, he actually found his thumb. He does the classic thumb-suck-with-index-finger-wrap-on-the-top-of-the-nose. Even though I was partly horrified because I come from a family with a history of notoriously late thumb suckers (and you can't take a thumb away), it was also just about the cutest thing I've ever seen. We also saw the Pediatrician last week and he is growing as he should. He is now 10 and a half pounds and 23 inches long. He is dropping lower and lower on the growth percentiles chart, but my Pediatrician isn't concerned. The conversation went something like this: Dr Keer: "Keep doing what you're doing, Jen." Me: "So, I shouldn't worry even though his percentiles are dropping?" Dr. Keer: (Eye Roll) Me: "Okay." ...........I LOVE that Dr. Keer is just going to give it to me straight (and he probably has more license to do so since we used to be neighbors.) I'll admit that even though I know Elijah is growing and gaining in a healthy fashion, it still might be part of my process to adjust to the fact that he may be shorter...maybe even short. Maybe not. But maybe he will be. I know it is NOT important in the big scheme of things, and yet it's something that I get a little twinge about. Eli is in the 15th% for height right now, having dropped down from the 50th% at birth. There is actually an entirely different growth chart for children with Down Syndrome. I know this, and yet I secretly hope that he'll beat the odds and end up tall. Then, again, if I'm only allowed a few "secret hopes" I don't really think I want to waste it on something as inconsequential as height... Still. Maybe it's "Karma" from having refused to date anyone shorter than me...
I had an incredible conversation with an acquaintance who is becoming more and more of a friend. She is also "Mom" to a child with special needs (not DS) and it's amazing how much we have in common. The way I met her was truly one of my most embarrassing moments ever. Embarrassing because I acted like a complete Prima Dona. I'll just say that I was having a moment. I said to her today, "Could you imagine if someone had whispered in our ears that "15 years from now you will both become friends and have more in common than you could begin to imagine"? It is amazing. I'm glad there is no fortune teller of life for me, because I am sure that the summary of what's to come could never capture the glory, adventure and growth that actually accompanies the life experience. And I am going to say this, because it is on my mind: You cannot escape the roller coaster of life by planning or perfecting or maintaining order. So, go with it. Don't stop trying for that new career because you're scared. Don't avoid that health test because it could be bad news. Don't give up on having another child because you're older and there are odds. Life is never going to turn out exactly the way you planned it. And if it did, how bored would you be?...
Okay. Stepping off my soap box now.
Sunday, July 25, 2010
Tuesday, July 13, 2010
On Aging
I have been thinking a lot about my age lately. Well, not my age per se, but that I am getting older...and looking older. Obviously it is inevitable that we all get older, but luckily I don't feel "older". I think that is a tribute to the fact that I have a lot of love in my life. I love what I do for work, even though when I have demanding clients it can be stressful. I love, love, love my family even though each of them (Except Elijah, so far) test my limits and occassionally leave me wondering if the job of Mothering comes with a paid Mental Health Day? HA! We ALL wish! And I love my friends, who rejuvenate me no matter what. However, I'll occassionally see my laugh lines in a photo or notice that my roots don't seem to be growing in as dark anymore (gray anyone??) and I'm reminded that aging is happening...one day, one week, one year, one child at a time...
I've always hoped that I could be one of those women who embrace growing older and do it gracefully. And I'll admit that I've been a little judgemental in my life. Seeing an older woman in a too short skirt or pig tails or, let's face it- waaay too much plastic surgery (I do live in LA LA land after all,) leaves me thinking, "I hope I never lose perspective that way." And while I do hope that I can be reasonable about the fashions that are too young looking for me, or the make-ups that are too harsh, or the jeans too tight, I want to measure my age in another way. I want to measure my life in a well-lived way. A life spent making mistakes and learning beautiful lessons as a result. A life filled with imperfections, that turn out to be just right anyway. So instead of thinking about what all I don't have anymore (cue: 6 pack abs, shiny, wrinkle free skin, and the adoration of every man I pass...well, okay... that's partially a list of what I wish I had...but I digress...) I'd like to put together a "what got me here" list. Like a general who had to earn his stripes, I've earned my own aging "stripes" and this is how:
My life so far, as seen by a very partial, random list:
Had my first job at a greasy chinese restaurant with a chef who "lost it", ran around with a meat cleaver trying to kill the other chef and ended up in a mental facility. (The restaurant has since closed.)
Learned to drive & passed my driver's test on my 16th birthday (Phew!)
Bought my first brand new car at the age of 29. Traded it in 6 years later for a minivan.
Went to community college while balancing a dance career and sending in final term papers from gigs in Japan.
Toured a slice of the world while working on cruise ships. Slept until 2:30pm regularly.
Stayed up so late talking to a friend that we decided to just start drinking coffee and start our day.
Married the wrong man. Got divorced. Figured out what was important and then married the right man. (And wore a better dress.)
Picked out an 8 week old puppy and brought him home, trained him, loved him, and said goodbye to him as he left this world almost 13 years later.
Gave birth to Christian. Tough recovery from the birth, tough baby.
Gave birth to Elijah. Easy recovery from the birth, easy baby. Hmmmm I sense a pattern.
Decided to give birth to Elijah without an epidural. Did it and felt like a rockstar.
Achieved my dream to be a dancer and did it until it didn't mean the same to me anymore.
Hid in a closet to scare a friend, waited 45 minutes to jump out, and scared him so badly that I STILL laugh out loud just thinking about the expression on his face. And that was 20 years ago.
I can make a list about myself and say that something happened 20 years ago. ....Wow.
When I look at this little list of random things from my life, I feel like I've earned my "stripes" in the best possible way. It reminds me that although it will occassionally be hard to watch my face and body grow older, I am trading in the youth for the experience, the wisdom and the appreciation.
In the words of one of the world's great choreographers:
"Age is the acceptance of a term of years, but maturity is the glory of the years." -Martha Graham
I've always hoped that I could be one of those women who embrace growing older and do it gracefully. And I'll admit that I've been a little judgemental in my life. Seeing an older woman in a too short skirt or pig tails or, let's face it- waaay too much plastic surgery (I do live in LA LA land after all,) leaves me thinking, "I hope I never lose perspective that way." And while I do hope that I can be reasonable about the fashions that are too young looking for me, or the make-ups that are too harsh, or the jeans too tight, I want to measure my age in another way. I want to measure my life in a well-lived way. A life spent making mistakes and learning beautiful lessons as a result. A life filled with imperfections, that turn out to be just right anyway. So instead of thinking about what all I don't have anymore (cue: 6 pack abs, shiny, wrinkle free skin, and the adoration of every man I pass...well, okay... that's partially a list of what I wish I had...but I digress...) I'd like to put together a "what got me here" list. Like a general who had to earn his stripes, I've earned my own aging "stripes" and this is how:
My life so far, as seen by a very partial, random list:
Had my first job at a greasy chinese restaurant with a chef who "lost it", ran around with a meat cleaver trying to kill the other chef and ended up in a mental facility. (The restaurant has since closed.)
Learned to drive & passed my driver's test on my 16th birthday (Phew!)
Bought my first brand new car at the age of 29. Traded it in 6 years later for a minivan.
Went to community college while balancing a dance career and sending in final term papers from gigs in Japan.
Toured a slice of the world while working on cruise ships. Slept until 2:30pm regularly.
Stayed up so late talking to a friend that we decided to just start drinking coffee and start our day.
Married the wrong man. Got divorced. Figured out what was important and then married the right man. (And wore a better dress.)
Picked out an 8 week old puppy and brought him home, trained him, loved him, and said goodbye to him as he left this world almost 13 years later.
Gave birth to Christian. Tough recovery from the birth, tough baby.
Gave birth to Elijah. Easy recovery from the birth, easy baby. Hmmmm I sense a pattern.
Decided to give birth to Elijah without an epidural. Did it and felt like a rockstar.
Achieved my dream to be a dancer and did it until it didn't mean the same to me anymore.
Hid in a closet to scare a friend, waited 45 minutes to jump out, and scared him so badly that I STILL laugh out loud just thinking about the expression on his face. And that was 20 years ago.
I can make a list about myself and say that something happened 20 years ago. ....Wow.
When I look at this little list of random things from my life, I feel like I've earned my "stripes" in the best possible way. It reminds me that although it will occassionally be hard to watch my face and body grow older, I am trading in the youth for the experience, the wisdom and the appreciation.
In the words of one of the world's great choreographers:
"Age is the acceptance of a term of years, but maturity is the glory of the years." -Martha Graham
Saturday, July 10, 2010
Thrown
Have you ever seen a movie where someone is focused on something while crossing a street- maybe waving to a friend or rushing to catch up to a lover and then....a bus mows them down in the middle of the street? The audience gasps. Audibly. Because it's shocking, and horrible, but mainly shocking, because like the character in the movie, you were focused on the waving friend or retreating lover. You weren't focused on the bus, and so you don't expect the character to be hit. It would be overly dramatic for me to say that I feel like I got hit by a bus when I wasn't looking, but I do feel a little side-swiped. This is why: On Thursday we had Elijah's first evaluation by a social worker from our local Regional Center to start assessing what therapies would be necessary for him. The appointment, overall, went really well. The social worker seemed thorough, nice and very informative. At this point it looks like he is starting off with a recommendation of Occupational therapy once a week. We set some goals for Elijah to achieve and I feel a little better that the ball is rolling and that we have clear, solid goals to achieve. However, in the middle of our evaluation, Christian (who had been playing in the backyard with my sister-in-law) came in and interrupted us with some chit chat about playing with the water outside. He said about 2 sentences and then went back outside for more water play. The social worker turned to me and said, "Have you ever had your son evaluated by a speech therapist? His clarity should be a lot better by this age." I sort of felt the blood drain from my face. Because there can't be anything wrong with Christian. There just can't. Even worse was the feeling of How did I miss this? Is there even something to miss? This is coming from left field. Was I focusing so much on Elijah, because of the Down syndrome that I missed the fact that my precious firstborn might need some help too? The social worker said, "Many parents miss speech delays because they are around their child all of the time and can understand them." So, now I'm thinking and re-thinking about every last syllable that Christian mutters. He's 3 years and 2 months and his L's do sound like Y's. Is that normal? My brain has been going a mile a minute since Thursday. I hadn't noticed him being much further down the chain of development from his other friends his age. Everyone I have talked to about it has tried to assure me Christian is fine and will be fine. If he has any type of speech delay, we can get him a little help and then he'll move past it. That's all. I know they're right. I know that I shouldn't worry, but I simply can't help it. He is my baby and will always be my baby and my job is to help him grown and thrive, feel loved, feel safe. I'm in a bit of a mental cul-de-sac. It's been 2 days since the social worker was here and I'm starting to relax a little bit but it is still occupying much of my mind. More than anything, I just feel a little thrown. I didn't see this coming at all. I have decided that nothing drastic needs to be done right away. I will mention it to our Pediatrician and see what he says. Next week there will be a speech therapist at our Friday play group and I may send an email to see if it would be appropriate to get her assessment on it. Other than that, we have a lot of summer to get to.
Since I lasted blogged, I had a great girls night out in honor of a good friend's birthday (complete with margaritas and the new Twilight series movie. Don't judge.), we celebrated the 4th of July (BBQ with friends in the am and then fireworks with family at night) and welcomed Charles' sister from the East Coast (Yay! Marilyn!). It has been a very full week, culminating to today, our 6 year wedding anniversary. I can't believe that it has been 6 years already...and we've actually been together for close to 10 years. Where did the time go? I guess time really does fly when you're having fun. This year has been tough on us- a true rollercoaster ride- a challenging year for Charles' work in the entertainment industry, a pregnancy, a back yard makeover by HGTV, shocking news that our baby Elijah has Down syndrome, Elijah's birth, a short NICU stay, the end of transitional Mommy and Me preschool for Christian..Phew! The most amazing part about my hubby is that through it all, I've never had to doubt him. I never worry that things will get rough and he'll threaten or doom the relationship. If we have a fight, we get over it. And we find the funny laugh-until-you-cry things too. I can truly trust that Charles is in this for richer or poorer, in sickness and in health, and because of that, I get to be ME. I feel safe to really feel in life. I don't have to pretend or hide my true feelings about anything. This, to me, is the definition of True Love. True Love accepts, as-is, with all of the warts and wrinkles that life throws our way... We celebrated our anniversary with a great Sushi dinner, foot massages and a frozen yogurt treat- all sans kids (thanks to my rockin' SIL.) It was just a little cherry on top of what makes me happiest: that Charles loves me, I love him, we have two beautiful boys and I don't have to worry that that won't be enough. It's more than enough. It's everything.

Friday, July 2, 2010
The Bonds of Motherhood
When I was 10 years old, I had a little yellow diary adorned with white flowers and a little gold lock with it's own tiny little key. I rarely ever wrote in it, because despite the cute gold lock, I was convinced that my parents or siblings would break into it (I mean, it wasn't exactly a dead bolt or anything...) and read my innermost thoughts. The few times I did write in it, the entries read something like this: "Jenny Birmingham broke up with me today. She's so mean." When I found this little diary as an adult and read that entry and entries like that, I was a little embarassed. I made my friendships sound as serious as some long term love affair. It is only now, years later, that I realize- without embarassment- that that is exactly what they are. At about the age of 24 or 25 I started making friends that I knew were going to last a lifetime, or close to it. Becoming a Mother took that to a whole new level. I never realized that when you have a baby, not only do you get the baby, but it comes with a lifetime membership to the club of Mom and the sympathy/ support of millions of other women who are mothers themselves. When my hubby was offered a job in Australia for an extended period of time, I knew that even with an infant in tow, I could move to another country. If nothing else, I'd be able to meet other Moms...by standing in line at a market, or walking in a park, or witnessing a complete meltdown tantrum and acknowledging it with a knowing look...all were recipes for an instant bond. Now, there's a new element thrown into the mix. Even though I am not defined by it, part of my new definition is: Mom to a child with special needs. With this, comes a new type of bonding. When I was pregnant with my firstborn, I spent a lot of time thinking about what he would be when he grew up, how we would raise him, what my hopes and dreams for him were. Of course I would say that I just wanted a healthy and happy baby, but secretly I wanted that plus more...maybe even rocket scientist more, or uber successful artist more. Today, I met a Mom of two, her youngest also with Down syndrome. I was telling her that one of the weird things I was thrown by when I got Elijah's diagnosis, was that he might not be tall like Charles and I. This was one of those weird things for me- it never occured to me when having children that they wouldn't take after some of these basic hereditary aspects. It was all a part of my process. But, today, this Mom leaned over to my sweet Elijah, gave him a loving stroke on his head and said to him, "None of that matters anymore, does it? We just want you to be happy and healthy and that really is all that matters." And it's true. You aren't challenged with the basic acceptance of things until there really is some quantum shift in life. I am forever changed by both of my kids, but especially so by Elijah. At only 10 weeks old, he is teaching me to slow down, to re-prioritize, to appreciate, and I mean really appreciate every day, and every new milestone in ways that I took for granted with Christian. I feel like I listen to people with new ears. And even see with new eyes.
I got to celebrate the bonds of Motherhood tonight with a new book club that I am part of. The night wasn't about being a Mom, and even though we did talk about our kids, it wasn't all about our kids. It was about a book, and food, and travel, and bonding over really, really, REALLY good cheese... And not once did I mention Down syndrome. The Down syndrome is a part of our lives, but it doesn't change as much as one might think...it doesn't change as much as I once thought. Elijah is just my baby boy, and he's healthy, which is all I could ask for. I'm just struck by how very grateful I am- for my babies, for my hubby, for my girlfriends...both old and new, Mommies and non-Mommies alike and for the unbelievable outpouring of love and support that I have been receiving lately. And I feel lucky...for it all...even for every last chromosome of it all...
I can't resist sharing some pictures from today, when Christian insisted on holding Elijah. Elijah wasn't exactly thrilled with Christian's holding technique, but Christian couldn't have been prouder (and neither could I).

And since I could never be so cruel as to mention really, really, REALLY good cheese and then not share...
I got to celebrate the bonds of Motherhood tonight with a new book club that I am part of. The night wasn't about being a Mom, and even though we did talk about our kids, it wasn't all about our kids. It was about a book, and food, and travel, and bonding over really, really, REALLY good cheese... And not once did I mention Down syndrome. The Down syndrome is a part of our lives, but it doesn't change as much as one might think...it doesn't change as much as I once thought. Elijah is just my baby boy, and he's healthy, which is all I could ask for. I'm just struck by how very grateful I am- for my babies, for my hubby, for my girlfriends...both old and new, Mommies and non-Mommies alike and for the unbelievable outpouring of love and support that I have been receiving lately. And I feel lucky...for it all...even for every last chromosome of it all...
I can't resist sharing some pictures from today, when Christian insisted on holding Elijah. Elijah wasn't exactly thrilled with Christian's holding technique, but Christian couldn't have been prouder (and neither could I).
And since I could never be so cruel as to mention really, really, REALLY good cheese and then not share...
Tuesday, June 29, 2010
A small victory
I'm a pretty big procrastinator. Especially when it's something I dread doing: the laundry, the bills, calling to yell at the cell phone company for getting the bill wrong...oh no, wait. I don't mind yelling at the cell phone company. Despite my tendency to procrastinate, it turns out that when it comes to fighting for my kids, I'm pretty bad-ass. Since my youngest son has Down syndrome, he will need additional therapies to help minimize his developmental delays. The state has programs that will pay for children with special needs to be evaluated and seen by all necessary therapists, but they are going to make it as. hard. as. possible. Maybe the thinking is that if it is just annoying enough, we'll give up and the state can keep their money. Yeah...no. Not this Momma. I'm not perfect here, because it did take me 8 weeks to fill out and submit the 14 page application form to get the ball rolling, but I blame nursing, sleepless nights and overwhelm (14 pages, people!!!!) I did finally receive a letter from the Regional Center that will assess Elijah. It basically states that they will need some insurance coverage information because due to budget cuts, all services will first be billed through insurance, if you have it. I had a ton of questions and tried to contact the case worker assigned to our case. That was last Wednesday. So, on Friday when I hadn't heard back, I called again. By today, Tuesday, still no word, so I emailed. And left a message. It went something like this: (Nice, bubbly, Mary Poppins-like voice) "Hi, this Jennifer Currier- Elijah Currier's Mother - and I have some questions about the letter I received. You can call me back at your earliest convenience, or (change to Cruella DeVille voice) I will just continue to call you until I reach you." Choices seem to work well for my 3 year old. I say "Would you like to walk to the car or should Mommy carry you to the car? (Either way, you're going to the car, Bud.) So, I figured maybe our case worker needed some simple choices: Call me back or I will call you and irritate you everyday, multiple times a day, until I speak to you. (Either way, you're gonna have to talk to me, Dude.) Interestingly enough, my call was returned a few hours later. So...yay! We finally have an evaluation set up for Elijah! I'm a little nervous about how it all works and what it all means, but I seem to be a quick study for cutting through the red tape. I won't be patting myself on the back too hard, because I know this is just one very small step in what will likely be a long road, but today I'm feeling just a little victorious.
My Aunt Carol, her hubby and my Cousin Rachel were in town this last week. I don't get to see them very often, and I hadn't really gotten to talk to my Aunt about Elijah's diagnois prior to this visit. As we were talking one night, she would say something and then ask, "Is that the right way to say it?" or "I didn't say that right, did I?" I realized that maybe I should share with everyone (as I did with my Aunt that night) the kinder way to discuss Down syndrome. So, here are a few of the common misconceptions:
You would say "a baby with Down syndrome" instead of "A Down syndrome baby". The idea here is that you put the child first and the syndrome after, because they are a child first. Just like you would say, "I have a friend with cancer" and not "I have a cancer friend."
It is called Down syndrome, not Down's syndrome. (I didn't really realize this myself at first.) So, even though you'll hear many people call it "Down's", it's really not. You're just stuck with spitting out the entire phrase. D.o.w.n. s.y.n.d.r.o.m.e. :) There's nothing really shorter...except Ds, which I often write and some people even say (as long as they're talking to people who already know the term.) I personally don't say Ds when I'm talking because I think our culture has already been reduced to too many acronyms. OMG. Lol! JMHO, tho. (code breaker: Oh my gosh. Laugh out loud! Just my humble opinion, though.)
A child who doesn't have Down syndrome (or any major developmental delay) would be called "typically developing" instead of "normal" ...cuz let's face it, what is "normal" anyway?
And definitely, under no circumstances should you ever refer to a child with any kind of developmental delay as "retarded". In fact, it has very much become a bad word, and has been deemed the "R" word. To fit right in alongside the "N" word. You just don't say it. Unless you're referring to yourself. in sarcastic humor. whilst laughing. But, some people are still sensitive about it, so maybe not even then. Feel it out first.
These are the ones that seem to make the most sense to me, and the ones that I've chosen to adopt because they feel right. With that said, though, I don't take offense when any of these things are said the "wrong" way. So, PLEASE, don't start second guessing some conversation we've had and think that you've highly offended me. If you had, you would know. ...Or at the very least, gotten my Cruella DeVille voice.
And since this blog is all about me and my boys, but has very few pictures of me with my boys, I've included a recent pic of me and my littest sweetie:
My Aunt Carol, her hubby and my Cousin Rachel were in town this last week. I don't get to see them very often, and I hadn't really gotten to talk to my Aunt about Elijah's diagnois prior to this visit. As we were talking one night, she would say something and then ask, "Is that the right way to say it?" or "I didn't say that right, did I?" I realized that maybe I should share with everyone (as I did with my Aunt that night) the kinder way to discuss Down syndrome. So, here are a few of the common misconceptions:
You would say "a baby with Down syndrome" instead of "A Down syndrome baby". The idea here is that you put the child first and the syndrome after, because they are a child first. Just like you would say, "I have a friend with cancer" and not "I have a cancer friend."
It is called Down syndrome, not Down's syndrome. (I didn't really realize this myself at first.) So, even though you'll hear many people call it "Down's", it's really not. You're just stuck with spitting out the entire phrase. D.o.w.n. s.y.n.d.r.o.m.e. :) There's nothing really shorter...except Ds, which I often write and some people even say (as long as they're talking to people who already know the term.) I personally don't say Ds when I'm talking because I think our culture has already been reduced to too many acronyms. OMG. Lol! JMHO, tho. (code breaker: Oh my gosh. Laugh out loud! Just my humble opinion, though.)
A child who doesn't have Down syndrome (or any major developmental delay) would be called "typically developing" instead of "normal" ...cuz let's face it, what is "normal" anyway?
And definitely, under no circumstances should you ever refer to a child with any kind of developmental delay as "retarded". In fact, it has very much become a bad word, and has been deemed the "R" word. To fit right in alongside the "N" word. You just don't say it. Unless you're referring to yourself. in sarcastic humor. whilst laughing. But, some people are still sensitive about it, so maybe not even then. Feel it out first.
These are the ones that seem to make the most sense to me, and the ones that I've chosen to adopt because they feel right. With that said, though, I don't take offense when any of these things are said the "wrong" way. So, PLEASE, don't start second guessing some conversation we've had and think that you've highly offended me. If you had, you would know. ...Or at the very least, gotten my Cruella DeVille voice.
And since this blog is all about me and my boys, but has very few pictures of me with my boys, I've included a recent pic of me and my littest sweetie:
Saturday, June 26, 2010
The Best Milestone
He did it. Tonight at just a little past 11:00pm, I got what I have been praying for (in fact, just less than an hour after one of my prayers): Elijah smiled at me. ...On Purpose. Then he did it again and again. Four big, beautiful smiles while looking right at me. Tears sprung from my eyes. I mean, the tears literally sprung and flowed down my face. I've been trying hard not to be bummed that Elijah doesn't really look at me, and because he doesn't really look at me, it's tough to get that first intended smile. But, tonight, I decided to try again with him. I rested him against my pulled up knees and kept trying to get his focus...he bobbed and weaved for a bit, but eventually settled and looked right at me. I was thrilled and ready to call today a success, when he responded to my ear to ear grin, with a cock-eyed grin of his own. Oh happy day! After the third smile, (where I half wondered if it was all some kind of mirage) I challenged him and said, "Come on, give me one more just so I know it's real", and...ask and ye shall receive! Since he seemed to be in a pretty smiley mood, I tried to capture in a photo, what that beautiful smile looked like. This was the best I could get, but it still makes me happy:

It was a full week for us, and yesterday was my first OB appointment since Elijah was born. I wrote a Thank you note to my doctor, Dr. Kim, but the words just seem so insignificant compared to what I really feel. This is a doctor who brings new meaning to the words "bedside manner"- she supported, encouraged and shared her faith with me throughout my pregnancy. When Elijah was born, she asked if I would like her to pray with us (!!!) I said, of course, yes. She grabbed my hand and prayed for my baby's health and for him to be a blessing to our whole family. I can't imagine that there are a lot of doctors in L.A. who offer to pray with their patients. Speaking from experience though, it would be nice if there were more who did. Despite feeling like my words were incomparable to my feelings, I managed to put together a short Thank you note and printed a picture of Elijah with his name and birth date. Dr. Kim really loved the photo and welled up a few times as we talked about how we are all doing. I left thinking about how blessed I am to have her caring for me, and incredibly touched that she felt blessed to care for me too.
Today was my 4th visit to Club 21, which is a resource program for families and children with Down syndrome. I met two more Mom's with young babies. Apparently there are 7 of us who have had babies with Ds since the end of March. It's a good amount, but also a very, very small amount when you think about the population from which we're pulled. So...there are seven of us. It kinda makes me feel like I'm part of a Superhero team. Our individual superhero powers to be determined...The playgroup today was really great. There was a Speech Therapist there to talk with us, offer advice, answer questions, etc. It was extremely helpful. It's surprising how many things set a child up for successful language skills starting at such a young age. I got a few more suggestions of things I can do with Elijah to encourage his development, and it feels really good to have something I can Do...
Well, my baby smiling high is wearing off and in it's place is pure exhaustion, so it is time to say night-night. Sweet dreams. (I know they will be for me tonight.)
It was a full week for us, and yesterday was my first OB appointment since Elijah was born. I wrote a Thank you note to my doctor, Dr. Kim, but the words just seem so insignificant compared to what I really feel. This is a doctor who brings new meaning to the words "bedside manner"- she supported, encouraged and shared her faith with me throughout my pregnancy. When Elijah was born, she asked if I would like her to pray with us (!!!) I said, of course, yes. She grabbed my hand and prayed for my baby's health and for him to be a blessing to our whole family. I can't imagine that there are a lot of doctors in L.A. who offer to pray with their patients. Speaking from experience though, it would be nice if there were more who did. Despite feeling like my words were incomparable to my feelings, I managed to put together a short Thank you note and printed a picture of Elijah with his name and birth date. Dr. Kim really loved the photo and welled up a few times as we talked about how we are all doing. I left thinking about how blessed I am to have her caring for me, and incredibly touched that she felt blessed to care for me too.
Today was my 4th visit to Club 21, which is a resource program for families and children with Down syndrome. I met two more Mom's with young babies. Apparently there are 7 of us who have had babies with Ds since the end of March. It's a good amount, but also a very, very small amount when you think about the population from which we're pulled. So...there are seven of us. It kinda makes me feel like I'm part of a Superhero team. Our individual superhero powers to be determined...The playgroup today was really great. There was a Speech Therapist there to talk with us, offer advice, answer questions, etc. It was extremely helpful. It's surprising how many things set a child up for successful language skills starting at such a young age. I got a few more suggestions of things I can do with Elijah to encourage his development, and it feels really good to have something I can Do...
Well, my baby smiling high is wearing off and in it's place is pure exhaustion, so it is time to say night-night. Sweet dreams. (I know they will be for me tonight.)
Monday, June 21, 2010
The Living room dance
Being a Mom, it's easy to forget that I'm a dancer at heart. But, when I really need a release I turn to dance. Often, I wait until I have the house to myself, then close the blinds, turn down the lights, turn up the music and ...dance. I call it The Living Room dance. Mostly because...well, it takes place in the living room. It has the most space and it's just that private express-yourself-and-not-be-judged kind of thing. When I had Christian, I invited him into my Living Room dance. I turned on some great jazz music and he giggled with every waltz and jump I did. Now that he's a little older, he knows the drill...even down to the little chasse step I can do with a baby in tow. Tonight we inducted Elijah into the Living Room dance. He was a quiet participant, but I took that as a nod of appreciation. In babyland, if they are not crying, I think it qualifies as a nod of approval. And then he fell asleep...which DEFINITELY means he loved it!! :) I LOVE this time with my boys!!! It's really something to watch your oldest get such a sense of joy out of moving his body and to see your youngest lulled into a content trance by it. It's the little moments like these that make me so appreciative of the life I have.
The journey that I'm on with both of my boys is going to unfold slowly...sometimes slower than I want, but I'm going to savor each moment. Even though I find each new age for Christian a unique challenge, he is such a sweet boy and I find my heart so often brimming with pride- his recent successes in potty training and when he remembers to say "please" and "thank you" without a reminder. Then, there is my sweet Elijah...I can't put my finger on why he is so sweet. There is just something about him. I can't wait to get to know him better.
I've been trying to make a little time for just Elijah and I, where I read or sing to him. I received this beautiful book of a compilation of poems and lyrics put together by Julie Andrews. I've been reading it to Elijah and getting a giggle myself from some of the contributions. One that struck me today that I wanted to share is a great perspective on Faith:
Faith
You said to us, your arms outstretched
- a golden boy of three,
"I'm waiting for a butterfly
to come land on me."
Your dad and I were worried
We exchanged a little smile.
"You know," Dad offered tenderly,
"that might take awhile."
"Try again," I added,
"when the bushes are in flower..."
But still you stood there, motionless,
for what seemed like an hour.
"How about a game of catch?"
Dad hoped he could distract,
"After the butterfly," you said,
with confidence and tact.
We knew, as grown ups do, of course
this dream could not come true-
the tears and disappointment
would undoubtedly ensue.
Yet suddenly, from nowhere,
just the way you had foretold,
Her Majesty appeared
and settled lightly on your shoulder.
Your smile extended ear to ear.
You looked at Dad and me.
She flexed her lovely orange wings,
and you said, simply, "See?"
-Emma Walton Hamilton
So, tonight, I am trying to focus on the childlike faith that incredible things happen for those who believe...
...And just as illusive as that butterfly, I caught the smile...

One of our Living Room dance songs, "Louella" by Marcia Ball is on my playlist for your listening pleasure!
The journey that I'm on with both of my boys is going to unfold slowly...sometimes slower than I want, but I'm going to savor each moment. Even though I find each new age for Christian a unique challenge, he is such a sweet boy and I find my heart so often brimming with pride- his recent successes in potty training and when he remembers to say "please" and "thank you" without a reminder. Then, there is my sweet Elijah...I can't put my finger on why he is so sweet. There is just something about him. I can't wait to get to know him better.
I've been trying to make a little time for just Elijah and I, where I read or sing to him. I received this beautiful book of a compilation of poems and lyrics put together by Julie Andrews. I've been reading it to Elijah and getting a giggle myself from some of the contributions. One that struck me today that I wanted to share is a great perspective on Faith:
Faith
You said to us, your arms outstretched
- a golden boy of three,
"I'm waiting for a butterfly
to come land on me."
Your dad and I were worried
We exchanged a little smile.
"You know," Dad offered tenderly,
"that might take awhile."
"Try again," I added,
"when the bushes are in flower..."
But still you stood there, motionless,
for what seemed like an hour.
"How about a game of catch?"
Dad hoped he could distract,
"After the butterfly," you said,
with confidence and tact.
We knew, as grown ups do, of course
this dream could not come true-
the tears and disappointment
would undoubtedly ensue.
Yet suddenly, from nowhere,
just the way you had foretold,
Her Majesty appeared
and settled lightly on your shoulder.
Your smile extended ear to ear.
You looked at Dad and me.
She flexed her lovely orange wings,
and you said, simply, "See?"
-Emma Walton Hamilton
So, tonight, I am trying to focus on the childlike faith that incredible things happen for those who believe...
...And just as illusive as that butterfly, I caught the smile...
One of our Living Room dance songs, "Louella" by Marcia Ball is on my playlist for your listening pleasure!
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