Tuesday, March 29, 2011

Minivan Meltdown

It all started on Tuesday.  I was minding my own business, driving to work on the freeway, and going up a pretty steep grade when all of a sudden I notice my temperature gauge climbing up into the red. Quick decision: Try to get to the top of the grade and cruise down to see what happens? Pull off the road and turn off the car?  I pulled off the freeway onto the narrow shoulder and leaned to the right every time a large semi truck would drive by...as if by leaning, the truck couldn't hit me.  It was scary.  So, I decide to try to make it to the top of the grade: I can see it about 100 yards ahead....if I can just get there, then cruising down the grade and into a gas station is do-able...I can avoid calling road service and essentially putting an end to making it to work. So, I drive. Hazards blinking and temperature gauge all the way into the red, with an alarm going off: Stop driving, Stop driving, Stop driving, it seemed to be saying to me. I get to the top of the grade, pull off the exit and turn off my car.  It is one of those middle-of-nowhere exits. No gas stations. No fast food. No...people. Great. So I sit there shaking and trying to decide what to do next, when a police officer sees me and pulls over to see what's going on.  I fill him in on the situation and ask him to follow me to the nearest gas station- which he says is two exits away, but is all downhill.  I go for it.  As soon as I start cruising down the grade, my temperature gauge goes back to normal.  I pull off at the gas station, thank the police officer and open my hood. I can see that the water reserve tank is nearly empty, so I fill it up and begin to mentally rearrange my week to include a trip to the mechanic.  (I had been told there was a small hole in my radiator over a year ago. A bottle of "Stop Leak" and keeping an eye on the water level was all that I needed. I hadn't had a single problem since and wondered if the original mechanic had been wrong in the diagnosis. Apparently not.)  Since I had had such good luck with the Stop Leak, I figured another bottle would do me.  I started up my car to get back on the road, but it was not good.  The whole car was shaking and shuddering as if it was going to stall.  It didn't.  I just wanted to get to work and deal with all of this afterward.  Every time I came to a stop the car sounded like it was going to die, but when it was in Park, it sounded fairly normal- still running a little rough, but better.  So every stop light, stop sign or left turn meant I would shift into Park and then nearly gun it to make sure it kept running.  Even at the time I knew it was completely irrational.

By the next day, my car was still running a little rough, but it seemed to be doing better- the temperature gauge was holding steady and I was hoping to get to Monday before taking it in for some inevitable repairs. (I figured it was time for this radiator replacement, but I had gone a year with no problems, so I figured what could a few more days do?) Friday started well....other than the fact that I had an insane to-do list. It was the kind of to-do list that a person without children and any need for sustenance or bathroom breaks might still have trouble completing.  I knew I stood little to no chance of tackling it all.  On the way to dropping Christian off at preschool, my car sounded great!  It was running smoothly again and I was feeling hopeful about my to-do list. I should have known that Mr. Murphy and his annoying "Law" were going to wreck havoc on my day.  I feel a little riled up still about my day on Friday.  I can honestly say that it was one of the worst days I've had since I can remember.  It included 4 different overheatings- each time (with the help of my Dad, who actually knows a good deal about cars) I thought I had solved it and that the mechanic could wait until Monday.  We figured out that the news was not good news, when at 6pm (note: all mechanics closed now til Monday) we noticed white steam coming out of my exhaust pipe. My Dad simply said, "That's bad.  That's really bad.  It probably means you have a blown head gasket or worse, a crack in the engine block.  If so, your van is essentially toast."  

I took my minivan in to the mechanic today.  It's not good.  Blown head gasket. Bad radiator. What does that really mean?  It means a $2000 repair!!!!!!!!  (Insert slumping and forehead grabbing here.) I'm trying to remember the up side, so I came up with this list to make myself feel better when I am trapped at home for the next 5 days with no vehicle, because...oh yeah! It's gonna take 5 days of repair AND $2000!!!

1. A $2000 repair is not a $10,000- $40,000 minivan replacement cost.
2. I now know where a radiator is in a car, and can even add water to it.
3. I know that there is a thermostat in your car that only opens once the car gets to a certain temperature, and when it opens it allows more water and coolant into the radiator.
4. I know about wet spark plug wires, and mis-firing engines. 
5. I know that shifting my car into park at every stop light isn't helping anything...no matter how much better it made me feel.
6. And I know how white steam coming out the back of your car is bad news. Very, very, very bad news.

My mechanic felt bad for me today.  He said, (and I'll quote) "Somedays I think I would've been better off as  a Mortician. I feel terrible having to give people bad news like this all of the time.  I was dreading having to tell you."  Yeah...that sucks.  So, I'll add an extra point to my list:

7. I have a cool mechanic.

Oh yeah, and...
8. If you ever end up on some reality show where you need a team mate who knows a bunch of random facts??...I'm your girl.

Now that I'm going to be house-bound for the next 5 days (probably more because there is a weekend tossed in there...) I am  focusing on my boys. Elijah made his first command decision: He has stopped nursing. (sniff, sniff...) I had planned to  nurse until he was a year old, which is what I did with Christian.  By the end of the 12 months, the first time around, I could not wait to be done.  This time I was still feeling like the end goal was in sight- I could see the yellow tape at the finish line.  Then, he pulled a fast one on me, threw his hands up, shook em side to side and said All done. (He's not really using sign language yet, but you get my drift...)  Even though I was only a few weeks from my end goal, I've been feeling sad that he's done. It doesn't really make any sense, but I know there are other nursing Mamas out there that know what I mean.  It's not always rational.  Maybe it's because he's growing up. Maybe it's because he doesn't "need" me the same way anymore. Maybe it's because the last traces of hormones (that are now leaving my body) are having their way with me...

When I think about the whole breastfeeding relationship and what happens during that time, I remember a funny exchange that happened between Charles and I. It happened while I was out with a girlfriend and called to check in on how Charles and the boys were doing.  Charles brought up a concern that went something like this:
C: I think Elijah is getting a little cold.
Me: Okay.  Is he acting okay?
C: Yeah, but I was thinking maybe we shouldn't give him any of your breastmilk.
Me: (Frowning) What do you mean?
C: Well, I know when I have a cold and congestion, if I have any dairy products it makes the mucus worse.
Me: (pause)
Me: (still pausing)
Me: Hon.... I am not a dairy cow.
(Insert the sudden attention of every female within earshot...and smiles and laughing breaking out.)  Now...just to be clear, this isn't about my husband being some sort of airhead- this is actually a common misconception. Seriously. Google it.

So, I'm done with the breastfeeding and I'm not quite to happy about it yet, but I'll get there.

Last week was picture week and parent-teacher conferences at Christian's preschool.  I'll start with the good part:


I think it is a true miracle that the photographer got this shot. Christian is in the goofy faces phase.  If he knows there is a camera or is asked to say cheese, it is all grimacing and goofy faces.  This guy is good and caught him off guard. And we have a cute "1st year of preschool picture" to put on the mantle.

The parent-teacher conference was far less traumatizing than last time. (See this post for that nonsense.) However, I have a little issue with how one of the teachers presents her observations to the parents.  Well...maybe it is just me, but her tone of voice always sounds a bit fraught with concern, and she focuses primarily on the things that she thinks the child is having trouble with.  For Christian, she expressed concern that he likes to play with the older boys out on the playground. But that he doesn't know how to ask if he can play with them, and instead just jumps in and starts doing what they're doing.  Okay.  This time around, I really tried to keep it all light, but when the conference time was coming to an end and she hadn't expressed one thing that Christian seemed to be doing well, I looked at her with a smile and asked (a little pointedly) Okay. Why don't you tell me something that Christian has been excelling at lately? She stammered a bit, but eventually said that his language skills are coming along great, or something of the sort.  On the way home from school that day, Christian saw some boys chasing each other around the Pine Grove. He said to me, "I wanna chase them too."  I said, "Okay. Why don't you say, Hey guys can I play too?"  He turned right to them, raised his voice and said, "Hey guys! Can I play too?"  Yeah... I'm not thinking there is much of a problem to this.


My big boy loves his "Leo".  My Mom bought him this leopard that they named Leo while I was in the hospital recovering from giving birth to Elijah.  Just yesterday Christian said, "Leo was in the hospital when Mommy was in the hospital too."  My heart jumps a little that the animal he is most attached to is the one that came as a comfort to him while I was in the hospital...and away from him.  Even though he's my "big boy", he will always be my baby and it makes makes my heart hurt to know how much he still needs me. A good hurt, though.

Elijah has been doing great.  He's mastering all kinds of new play and his therapists are bringing tricks and tools to our sessions each week.  Mostly, he's just a happy, healthy baby.  Last night, I did a late night feeding with him and after that he was wide.awake. He wasn't crying- just loud and talkative.  Somehow he didn't wake up his brother, but I really do not know how.  I couldn't sleep, but figured he'd tire out soon enough and crash again.  He barely slept.  I mean, literally I don't know when and for how long he did sleep.  Even naps were off today (probably because he's over-tired), so I put him down to sleep early tonight and he passed out in about 30 seconds flat.  Here's hoping that tonight he's back to his good sleep habits!!


And last, but not least, the winner from my last post, via Random.org: Comment number 8- Carrie!!!!!  You win the free 4x6 photobook from Photobooks by Laura!  I will email you with details.  Just to prove I am not playing favorites or cheating the system, my random.org pick:

(Note to self: Taking a picture of your computer screen with your cell phone camera does not produce the best quality photo.) Another random fact learned...keep me in mind as that reality show team mate....just sayin'.

Wednesday, March 23, 2011

Judging the Outsides

In the ever growing world of "We-don't-have-to-spell-anymore", another acronym has emerged: WAHM. It means, Work at home Mom.  I say that the acronym has emerged, because let's face it, not only did the acronym not exist, but even the idea existed in rarity in my parents generation. I am a WAHM and I also work part time out of the house. Sometimes I feel like I have the best of both worlds: Time with my boys and bringing in some money for the family, and sometimes I feel that I have the worst of both worlds: never enough time to actually focus on work (I am a night owl. Read: 8pm-midnight is the only time anything gets done around here.) and I am also unfocused when I am trying to spend time with the kids.  I always end up feeling that I have sacrificed one area to "phone it in", in the other area.  It is very frustrating.  Today, I suggested a rousing game of Candy Land with my 4 year old. We pulled out the game board, chose our gingerbread people (He- Green, Me- Red) and stacked our cards.  I generously suggested he go first. First he tried to cheat to find a card that had a double color on it.  Then he lied about it. ("It was on top.") Then, when I caved and said, "Okay, move your guy 2 purple spaces", he said, "No. I want to put it here instead." (4 purple spaces up.)  I just got irritated.  I didn't yell, I just got up and went back to my computer.  I couldn't help but think, I have too much to do right now, and you don't even want to play WITH me anyway, so why am I bothering? Sigh. The reality is that it's not that big of a deal that he wants to cheat. and lie. ...Right?!  I mean, he's not yet four years old.  I "should" be able to sit there with him, stare blankly into the game board and be supportive, yet firm about the cheating and lying.  Instead, he cried that I wasn't going to play with him watch him play anymore and needed to hug me over and over again, while crying giant crocodile tears.  And the guilt goes on...I'm just finding it hard to balance.  I've had a surge of work inquiries and there is always a ton to do when I'm trying to contract a new client.  Even though I love my party planning business, there are days where I wish I could just dump it all because it's not worth it if I can't sit through one full game of Candy Land, with a preschooler who is trying to cheat his way to the end anyway...I know I can't be the only Mom who feels this way, and yet it's always tempting to believe that someone else has figured out the secret to doing it all...perhaps the one with the hand made St. Patrick's Day outfit and the blog post that talks about how the "Leprechaun" messed up their house and only left them green things to drink? (Are. you. F-ing. kidding. me???!!! Who has the time for that nonsense??? I can't even finish one lousy game of Candy Land, let alone sew an outfit out of hand dyed green shamrocks and gold threaded tulle.) No matter how hard I try, it seems like someone else is doing it better.  BUT....then I remind myself not to judge someone else's "outside" by my "inside".  I don't really know what's going on in their household.  Maybe they're compensating. Maybe they are actually that fabulous.  Either way, I'm doing all I can.  I just sometimes wish it felt better. Don't get me wrong...there are days where I feel like I've won the jackpot in my situation, but then there are the days like today where it just feels like I'm failing across the board...

We went without power on Sunday for about 10 hours.  It was raining and storming in LA, like we haven't seen for quite awhile.  It was cozy and nice for the first part of the day, but once the power was out it was all brains on deck: What to do with the kids when you can't go outside and you can't turn anything on?  Luckily, Elijah took a nice long nap and Christian can easily entertain himself with a pile of pillows and a few stuffed animals, so I got a chance to make up a big pot of vegetable soup.  I filled everyone up with soup and then said, "Well, I'm off!" (I had made plans about 2 months ago to meet up with some new friends from out of town.)  Before Elijah was born, I could not imagine a situation where I would "ditch" my hubby and kids in the middle of a rain storm to have dinner with people I had actually never met in person before.  But Elijah opened up a whole new world for me.  He opened up a world of people that have been in my shoes before.  The Mommas that also have a child with Down syndrome.  A world of people who have been on this journey longer than me, the same amount of time as me, and even less than me.  And it turns out there are some pretty cool people that are part of this world.  I had dinner with 5 of them.


It was cool. The greatest thing is that I felt that even without our child's special needs, we would have gotten along, and we would have been friends. I will admit that it was nice to be able to shorthand the situation.  They all know exactly what it's like, they know what questions to ask and there is little, to no, explaining to do about it.  I loved it.  Yeah...technically we met on the internet, but these ladies "get" me. They are my people.
My people won't replace the friends and family who know me so well, but they make a nice addition.  They add an element of knowing that is nice to have around.  Most of the time, I'll probably want to go to an old, trusted friend to say I had a rough day, but sometimes...if that rough day involves a little one with an extra chromosome... I might need to go to someone to say, I had a rough day, simply so they can say, I know. And they do.

In honor of new friends and old friends, having time with my boys and feeling like I never have enough time with my boys... I am supporting a friend's new business.  Because we could all use a little extra time to spend with our families, instead of pouring over the volumes of un-filed and un-scrapbooked photos (Come on...we all have 'em...) Photo Books by Laura will take the stress out of it for you. Laura masterfully arranges and creates beautiful photobooks filled with all of your memories-saving you the time and stress of doing it (or never getting around to it) yourself! Check out her website at www.photobooksbylaura.com.  And now....drum roll please...I am thrilled to present an exciting giveaway on my blog!!! Laura has agreed to give away one free 4x6 photo book to one random commenter on my blog!  So, leave a comment (if you do so Anonymously, please say who you are) and I will choose a comment at random (using Random.org, so I can't be biased) to win the free photobook!  (No need to be local- Laura can work with anyone, anywhere in the country!)

...And if you did happen to make an outfit out of hand dyed green shamrocks and gold threaded tulle...well, then I've got a lying and cheating preschooler who could use some of your patience in a rousing game of Candy Land...

Friday, March 18, 2011

This much I know is true

Life is never as much fun when you're sick.  Especially when you're sick and a Mom.  Because then there is no time for being sick...or, at least, no time for recovering from being sick.  Today, I had to try to pull it all together because Friday mornings are insane.  We had OT for Elijah, then raced to take Christian to preschool, only to race home to feed Elijah (again), prepare the snacks for Christian's preschool class (because I was "Snack Mom"), then cart everything (plus a tutu) back to Christian's preschool to set-up snacks and then speak to the class about being a Ballet Teacher.  Phew! Despite my annoying cold, talking to Christian's preschool class about being a Ballet Teacher was a highlight.  I'm not a dental hygienist. I'm not a CPA.  I'm not a graphic designer. I am a Ballet Teacher...and let's face it, that is almost as cool as it comes for the under 4 years of age crowd. They sat riveted as I put on my ballet slippers, turned on some classical music and whipped out a costume for them to see.  Because I am a Mother of boys, I explained how ballet is for girls and boys, but that I didn't have a boy costume with me.  When boys are in ballet, they play very important roles, like Kings and Princes and Magicians.  We pointed our feet, turned them out to make alligator mouths, did a plie, took turns spinning in the circle, and waved our arms in the air like a tree blowing in the wind. They had a dozen questions: Do you stand on your toes in ballet? (Yes, but only in special shoes called Pointe shoes....and sshh...there is a secret about pointe shoes. They are very painful to wear, but very, very beautiful...) What is ballet? (It's a special kind of dancing.) Where do you do ballet? (Everyone goes to a special place, called a dance studio. The dance studio has wooden floors and mirrors on the walls, so you can see yourself dance.) Did you know I like Star Wars? (Oh! That is very interesting!)  Christian was so happy to have me there, and followed along so well with all of my instructions to the class! (Which gives me hope that one day he'll dance. I'm not hoping for a professional, but it would be great to see him using the discipline and developing the confidence of movement.) Basically, it was the best possible being-still-a-little-sick day I could have.

(Here is Christian's class- last week we threw a baby shower for one of his teachers.  All of the kids were so excited!)

It was a week full of doctor appointments and assessments for my littlest man.  On Monday, we had a long awaited Audiology appointment to check Elijah's hearing.  He hears, that is for sure. However, over the last couple of months, I've noticed times where he is not responding to sound. At all. Then, a few days later, he is fine and responding to everything.  At the Audiology appointment, the Audiologist told me that his ear drums are not vibrating, which indicates that there is fluid behind the ear drum. This can hamper hearing. She also said that he is not passing his hearing test, although that is somewhat inconclusive because of his age- not all babies will respond to sound in a consistent way at this age.  After talking to Charles about it, we are looking into having tubes put in his ears to drain the fluid and improve his hearing.  It may be a little on the proactive side, since our Pediatrician thinks the fluid is probably just a result of the congestion he has had on and off over the last couple of months. However, I don't think I want to wait and see.  The two things that are delayed across the board with children who have Down syndrome are gross motor skills, due to low muscle tone, and speech delays.  If Elijah is going to have speech delays, I want to do what I can to minimize the obstacles he'll have to be able to speak well.  Hearing is obviously important in the area of speech.  So, we have a referral to an ENT to get her opinion and expertise on the matter, and we'll see where to go from there. 

(Elijah and his Uncle Bill)

We also had our monthly well baby check up.  Elijah has gained TWO POUNDS since our last visit (about 6 weeks ago, due to some rescheduling on my part)!!! Woo hoo!  Finally gaining a little weight!  He is weighing in at a whopping 15 lbs. 8 oz. and he even climbed back up on the growth chart by a little bit. He is now in the, very impressive, 4th percentile! LOL! But, hey- after all of the food fattening and force feeding I've been doing, we'll take it!!

Lastly to report in Elijah land, we had assessments done by our Physical Therapist and Child Development Services people last week.  According to the PT, Elijah is at 6 months of age for gross motor skill development. According to the CDS, he is at 5-6 months for gross motor and fine motor skills, but at his actual age for social/emotional skills.  None of it is a surprise.   I don't really have feelings one way or the other about it.  I expected and am aware of his gross and fine motor skill delays, but see him continually making progress.  As for his social/emotional development, he is a joy- an interactive, sweet, acknowledging baby who loves people and loves to smile. Personally, I couldn't ask for more.


I got a call this week from a very close friend.  She told me that a friend of hers from work had gotten results from her recent prenatal blood test and ultrasound that were showing a 2 out of 3 chance that her baby has Down syndrome.  The ultrasound was also showing some concern for the baby's heart and how it was affecting the fetus.  Obviously her co-worker is concerned, and my friend wondered if I would be willing to talk to her.  Of course I wouldn't mind talking to her friend!  It wasn't really that long ago that I received similar results and was completely FREAKING out!! I know that when I received those initial diagnostic results, I had people offer for me to talk to some friends of theirs.  I had the best of intentions, thought that I would, but never actually made the calls.  I think part of me didn't want to validate the blood tests- part of me didn't want to yet start coping with the what-if-this-is-really-true part.  At that time, I needed to believe the tests were wrong.  I hope my friend's friend calls me.  I know what it's like when the only information you have is coming from the medical community and Google.  It is terrifying.  It is isolating.  I have never felt so alone in my life. I didn't actually reach out to anyone until Elijah's diagnosis was confirmed by Amniocentesis.  However, when I did, I realized that the most accurate information was not at all the information that came from the medical community, and certainly not from Google.  The most accurate information was from the families who lived it everyday. The ones whose doctors told them to terminate, because their baby might never walk, talk, or communicate.  The ones who, instead, watched their lives light up by a baby who fought all of the odds. Some did deal with medical complications, but they did just that: deal with them. All said they wouldn't change a thing.  I agree.  If I had a time machine that would take me back in time and change the fact that Elijah wouldn't have Ds, I don't think I would do it. Because then he wouldn't be Elijah. My world was blown up- initially in the most scary way- but then I was embraced by a community of people that I never would have met and been accepted by.  When I hear myself say this and I see it in my writing, I know that it would be hard to believe by the people who are in that scary place of limbo, not knowing if their baby will be born with a chromosomal disorder...or even something worse.  I can't stop thinking about this friend's friend.  I know how alone and scared she must be feeling right now.  If I had the chance, I would tell her to take the leap of faith. To not live too closely to the words of her doctors. That in early pregnancy, many things are malleable and the fears that exist medically today, may disappear tomorrow. I would tell her that I do not regret having a baby boy with Down syndrome- not even a little, teeny, tiny bit. I would tell her that I have two boys- one completely "typical" by the world's standards and one that is "different", but they are both special, unique, and a light to me in their own ways.  Lastly, I would tell her to be kind to herself- she didn't cause this, she isn't to blame and though it's so much easier to say that to accept: everything will work out, one way or another, it will be okay.  This much I know is true.

At the start of my day, I got a chance to witness the power of the sibling relationship.  When I arrived at Christian's preschool for snack and my ballet talk, I arrived during the ever important task of the "Share Bag".  Each child takes a turn taking home the share bag, then they choose an item from home to bring back and share with the class. With the help of a parent, they fill out 3 "clue questions", so that the class can try to guess what is in the share bag.  Today it was Hunter's turn.  Hunter is almost non-verbal.  I have literally never heard him say a single word, but he is the cutest little guy in that class and I always fight the urge to just grab and hug him.  He proudly displayed his share bag item, at the appropriate time.  I could see that it was a CD, but it was not until one of the little (4 year old) girls yelled out, "It's Justin Bieber!", did it all make sense.  Hunter is the youngest in his family. And the only boy. Yep. The teacher asked, "Do you know that song, "Baby, baby"? (and kind of sung the tune as she named the song)" and the same girl shouted, "No- that's not how it goes.  It goes..." (and proceeded to sing the lyrics perfectly for about a phrase.) It was hilarious and Hunter had an ear to ear grin.  It got me thinking about the power of sibling relationships.  The bonds that are formed can't be fully explained. I have a suspicion that one of Hunter's older sister's suggested the Justin Bieber share bag item, or as a result of having to listen to his sisters' choice in music, he is also a closet fan. Either way, it was his sibling relationships that brought a smile to my heart.  My own sister and I recently had a difficult communication patch, and it is always so painful when it happens (though, frankly, in 39 years I can count on one hand the number of times that we have even looked at each other cross-eyed). She mentioned to me that she thought that when I was hurt or upset that I came down harder on her than others.  I really don't think that this is true.  But, if it were true, I could understand why: We've lived longer, loved deeper and shared more than anyone else on earth.  It kinda makes sense to me that we could push each others buttons the hardest too.  Even though I'm not 100% comfortable where things are with her right now, she is my sister, and I love her so deeply that it hurts. So, when I watch the budding relationship that I see between my two boys, my heart literally hurts with joy.  The adoring way my boys look at each other, and how Christian looks out for Elijah and wants to include him in everything is beyond description. So, instead I'll just share a couple of photos.  The best part is that these were snapped in the moment- no posing, no staging, this was real (Well, based on my photography skills, that may be obvious...)


My boys love each other.

This much I know is true.

Wednesday, March 9, 2011

It's a Pity



You know what bugs me the most about my situation? It's the idea that there are people that pity me for having a child with Down syndrome.  The reason I don't always tell people right away that Elijah has Down syndrome is because I want them to have an experience with him first. To see what a sweet soul he really is.  Then, when the inquiring looks begin as to why is he 10 months old and still not sitting up independently, crawling or cruising, I can say, "Oh. Elijah has Down syndrome and that affects his muscle tone, so it will take him longer to develop his gross motor skills."  When it goes in that order, most people seem to respond with a genuine, Okay.  He sure is a cutie.  Which is what is most true about him.  What is true about me, is that I don't have it harder than most. Or, at least so far I haven't had it harder than most.  There are "cons" about Down syndrome, but also "pros", believe it or not.  A con is that it is taking him longer to develop his gross motor skills, but then I look at my friends with 10-12 month olds and they don't get a moments break because their babies are getting into E.V.E.R.Y.T.H.I.N.G.  We're not there yet, so I can leave my floors unvacuumed, my electric sockets uncovered, and hang out next to my baby as he rolls and plays in the general vicinity I put him in.  So...is that a "pro" or "con"?  I'm going with "pro", because at the moment I can barely leave my 3 year old unattended or else havoc is wreaked.

Some parents of children with Down syndrome are annoyed that there is a stereotype of "Kids with Down syndrome are always happy."  While this is not true- children with Down syndrome experience the same range of emotion as all other children: happiness, sadness, frustration, anger- they do seem to be exceptionally compassionate children.  My experience with Elijah is that his general demeanor is Content. While I appreciate and love every last fiber of my older son's being, raising him as a baby, was a FAR more challenging situation.  I'll credit some of that to being a nervous, first time Mom, but I also believe some of it is personality.  Christian cried A LOT as a baby, but he also smiled a lot.  Elijah cries only when something is really bothering him and he also smiles a lot.  So, I don't really think it has much to do with Down syndrome.  I just think it is my kids and the differences between them. 

It's been so exciting seeing Elijah work for, and start to achieve, some new milestones.  I also watch his therapists fall more and more in love with him each week.  Our sessions started out purely professional but now there is a softness to each of our therapists faces.  They are excited by his progress and charmed by his nature. He is quick to smile, even after a challenging series of exercises that has him complaining like a banshee.  He is pushing up on his arms frequently now, rolling to move all around the room, babbling like crazy, sitting independently (with arm support) for a few seconds at a time, and beginning to take notice of a lot more of the world. Here's a quick video of Elijah hanging out on the changing table and checking out the light as it comes through the curtains: (Be sure to pause the playlist at the bottom of the page or you'll be hearing two audio tracks. Very annoying.)

So... Pity?  I hate it.  I don't need it and it bums me out.  I'm stronger for facing the fears that life might be different with Elijah. I'm more appreciative of every second of his development.  I'm more "in the moment" than I have ever been in my life.  I am blessed by the beautiful connection that my two boys share.  The fact that Down syndrome and it's affects on children are so misunderstood?  That's the real pity.  My greatest wish, and my desire for this blog is that it might somehow positively affect someone who knows nothing about Down syndrome.  That someone might look at it and think, Wow. I had it all wrong.  That someone might say that Elijah's life is not to be pitied, but instead to be celebrated...for all of the ways he is alike and all of the ways he is different.

Monday, March 7, 2011

This moment is your life


I was invited on a wine tasting trip with a collection of girlfriends- two who are close friends and the rest a collection of newer friends and acquaintances.  We trekked 2 hours to the town of Temecula, which is becoming a booming wine country- now with about 38 wineries.  I will admit that going on a trip with this particular group of girls had me fighting to remain centered.  I found myself second guessing my wardrobe choices, then reminding myself that I am me. Take it or leave it.  I won't be in Chanel for the weekend.  Both because I cannot afford it, and also because at the core, I think it is important to dress for fit and function, regardless of who designed it.  I can't see myself wearing a pair of shoes that cost me a chunk of my month's salary, when it is highly possibly that some drunk guy, named Matt from the wine bus, is going to spill his Sangiovese all over said shoes...  I bought a new bag for the trip because I fell in love with it.  It happened to cost me $25 from H&M.  I shouldn't be embarrassed about that. And I'm not.

The trip preparations had me thinking about why I even cared about the absence of designer labels.  Whether you can afford designer labels can sometimes be a source of exclusivity.  Which is also to say that, it occasionally excludes people.  Excluding people makes me feel uncomfortable.  Even more so now that I have a baby who belongs to a group of people who have a history of being labeled as different and being excluded. But, even long before Elijah was born, I had a sense of wanting to be an approachable person.  I didn't want to be the one that made people feel left out.  I'm tall and blonde. It's funny how that immediately lumps me into a group of people who other people sometimes feel threatened by.  That it is some sort of express ticket to the good stuff. So I've always worked hard to make sure that people knew I was real.  I'll never forget the year I auditioned as a dancer for the Academy Awards when Debbie Allen was choreographing.  I was so excited!  Big audition with a choreographer that I thought I idolized.  I walked into the room, she taught the combination and then made an announcement to the group: I am not looking for any particular "type", because I know what it was like to be short and have brown hair.   I knew at that moment that I would not, under any circumstances be getting that job at the Academy Awards, and Debbie Allen fell from idolization to a person of prejudice for me.  

**I want to make sure that "my girls" don't think that I am saying that they are trying to be exclusive and prejudiced because many of them happen to like, and wear, designer labels- only that the thought of a weekend worrying about designer labels for me, made me think about this subject. You're all fabulous- whether in Chanel or The Gap.

Back to the weekend: I had an amazing time!  It was so nice to not be the trip planner and to get to just tag along and enjoy the company.  There was drunkeness, there were a couple of faux pas, but mostly there was a great time had by all.  After a full day of visiting 11 wineries, we re-grouped for a bit and then joined up again for dinner, then gambling (Well, I watched.  I don't gamble and it was so much more fun to watch my sober, pregnant friend Lori clean up at the table!), then hours of sweating and dancing at the rooftop bar in the hotel: The Eagle's Nest.  (Great name, don't you think?) I finished the weekend off with a visit with my oldest friend.  My friend Tracey and I have been friends since third grade!!  She is the friend who I used to run to the back of the play yard with, lie down on the patchy grass, and name all of the cloud formations we could see.  We would dream about our futures and how our friendship would still be intact (Because we would marry brothers, have kids who were best friends, and live next door to each other.  Obviously.)   Well, we did not marry brothers, our kids are not best friends, and we do not live next door to each other. Obviously. However, our friendship is still intact.  She has been there for me over many life changes and I have been there for her.  It might only have been over the phone and months might pass without a chance to speak, but the minute we do, it's as though no time has passed.  After all of these years, she is more like sister than a friend.  I cherish her so much, and am so glad we had a chance to catch up a little and that I got to hug her and her kids (who are growing up so fast!)

I came back from my weekend trip to the ear to ear grin from Christian, staring out at me from the window.  His happiness to see me was so heart warming! Elijah's whole body lit up when I walked into the room.  It's hard to decide which is best: getting a great weekend away with the girls or coming back home to the ones you love...



This weekend away made me think of this Omar Khayyám quote:
"Drink wine. This is life eternal. This is all that youth will give you. It is the season for wine, roses and drunken friends. Be happy for this moment. This moment is your life."