Monday, December 26, 2011

The Christmas Contact High

Wow. Christmas with a 4 and a half year old, a one and half year old, and a bevy of friends and family to celebrate with, is about as good as it might get. Each year seems to get better and better, and I'm left figuring it's gotta tap out at some point? Start to wane?  But, definitely not yet. 

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Charles and I took our roles of preparing for the kids' Christmas morning seriously.  Though, thanks to one very complicated (with no instructions) City set, it was. not. easy.  (I thought Charles was going to blow Santa's cover about 3 times when he started in at Christmas dinner about how difficult the set was to put together.)  Our Christmas Eve's preparations were made even more challenging by the lingering of a ton of great food and wine enjoyed with friends at their traditional Italian Feast of the Seven Fishes.  The boys were asleep the second their heads hit the pillows, and Charles and I felt not far behind.  But, alas, Christmas "put togethers" had other plans.

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We got a late start in the morning thanks to the late night (cue the hallelujah chorus), but woke up to Christian's excited face.  It made every last piece of that darn City Set worth it.

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And lo and behold...Santa ate the cookies and milk we left for him and the reindeer ate all of the carrots. (Christian insisted we leave the milk for Santa in his "Christian" mug.)

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Elijah had fun opening/throwing his presents...

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Elijah was just approved for Speech therapy and one of the recommended items to help with pre-speech development is photos of everyday items.  Pictures of Mommy and Daddy, of course, but also things like a cup, a spoon, a dog, a cat. The real-life photographs are the first step to help develop speech.  It's such a simple idea, but is so easy to overlook as a parent.  Elijah's little soft photo album for Christmas is going to be our first set of basic pictures, but my goal is to do a whole binder full of pictures of different items.  I sometimes wonder if I'm making it up, but we're hearing more and more first syllables out of Elijah. "Da-da" as he sees Daddy coming, "Mum" for me, and he seems to be mimicking the first sound of some words. (We were showing him a picture of an Octopus and saying, "Octopus, Octopus" and I swear (and the therapist who witnessed it, agrees) that he said, "Ock, Ock".

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But this Christmas was really Christian's time to shine.  He really "gets" it this year and as a result, it was SO much fun!!  It was four days straight of friends, fun, gifts, sweets and late bedtimes.

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Every good thing must come to an end, though.  As we drove home from our Christmas gathering at my parents house, Christian said, "Now THAT was a good day." I couldn't agree more.  I think all of the celebrating and the 'contact high' that a four year old gets from all of this Christmas stuff led to the little voice we heard in the middle of the night..."Mommy, I'm sick."  Groan.  I'm grateful that the "sick" happened on the let down and allowed us a beautiful, exciting and fun filled Christmas season.  I'm already thinking about all that has happened this year and the fresh-start feeling that comes from turning the page onto a new year...

I'm still on my contact high, but it is slowly and gently wearing off.  Now I get to just enjoy my family and some friends over the next week while all is quiet on the work front, and that couldn't sound any better to me!

Saturday, December 17, 2011

Dancing with Elijah

I talked in my last post about how Elijah was riveted upon watching some live dance at my dance studio's Holiday Party. Well, tonight I caught some video of him dancing with me- it is a joyous thing to be a part of to say the least! Be still my former dancer's heart. I had to share: (Don't forget to pause the music player at the bottom of the page!)



I hope that makes you giggle, because it was certainly contagious on my part. This season has been so much fun with him. Even though I've noticed a little return to "jelly legs" in regards to his standing (Our PT thinks it's a temporary set back due to a growth spurt), he is continuing to reach new milestones each week. This week saw him under the Christmas tree with ornaments in hand- proud expression on his face: "Look what I have Mommy!!" Then, there is the unwrapping gift Ninja moves: He climbs under the tree, on top of the packages, and unwraps those he can figure out. Gift bags don't stand a chance, and gift tags are easily and happily removed! It's hard to stay firm about the antics, because frankly it's so darn adorable.

Last thought of note: After Charles finished filming the video of Elijah and I dancing, I played it back. Elijah grabbed the camera, pulled his face in a little closer, then pointed at us and looked up at me, as if to say, "There we are!!" He was mesmerized. It was kind of surprising because he isn't interested in the television at all. I guess the TV is not as exciting when Mommy and he are not on it.

I've always loved dancing, but it has a new, sweeter meaning now that I can share it with my boys...

Sunday, December 11, 2011

All I Want For Christmas Is My Two Front Teeth

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Our holiday cards started going out a few days ago, and it's starting to actually feel like Christmas is on it's way. Work has taken over with abundance the last couple of months, and I've found myself craving time to just "do nothing" with my family. I finally had that chance this weekend! Well..we didn't exactly do nothing... I decorated the Christmas tree with Christian on Saturday, which was about as heart warming of an experience as I can recall. Christian was SO excited to decorate the tree and wanted to hang EVERY ornament. We got out the step ladder and let him get to work! I hung all of the cherished, breakable ornaments that I have been collecting since I was 16 years old, and Christian hung all of the non-breakables. (My Aunts started a beautiful tradition many years ago- in lieu of other types of Christmas gifts, they would send my sister and I a Christmas ornament for our future trees.  I love these ornaments- I remember who each ornament came from and I look forward with anticipation to unwrapping them from their year's hiatus to place on the tree. It is a tradition I plan to pay forward with my own niece and nephews down the line!)  Christian took his job seriously and tried his best to convince me to let him hang even some of the breakable ornaments..."Please, PLEASE Mommy, I will be weally, WEALLY carful!" I just couldn't cave though, because despite his very best- most "carful" intentions, ornaments fell like rain as he tried to place them on the tree. (I secretly rearranged a few after he went to sleep that night- I just couldn't entirely bring myself to endure the whole season with a straight row of: crystal icicle, red glitter ball, red glitter ball, red glitter ball, crystal icicle, crystal icicle...)

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Elijah- who currently seems happiest if he is throwing something, behaved himself rather nicely with the tree.  He takes an interest in it, but hasn't tried getting into mischief about it yet.  Fingers crossed that this theme continues and we won't spend Christmas with a baby gate around the tree... But, the biggest news is that Elijah got his two front teeth!! Just in time for Christmas!!  Just like the song!! Which is why the song is stuck in my head!! And won't come out!! And I taught it to Christian!! And now he won't stop singing it!!  :)
I am really excited about the teeth, though.  Teeth have been a very slow process with Elijah.  It was on that "list" of things that will be delayed due to an extra chromosome, but I was really beginning to wonder.  So, I'm sighing a tiny sigh of relief that more teeth are making an appearance and hopefully moving us closer to additional self feeding stages.  (We had brunch today and tried to mix some mostly dry pancake pieces in with Elijah's tried-and-true "puffs", but he could not be deceived.  He would eat a puff, pick up a pancake piece and chuck it onto the floor, then pick up another puff, and eat away...pancake-floor, puff-mouth, and so on and so forth.)

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Saturday night saw us celebrating with my dance studio for the annual Holiday party with the competition team.  I was curious to see how Elijah would do in a large room full of screaming girls, but he took it all in stride. He flirted where necessary and made himself at home.  Christian, of course, immediately found the group of older boys (one of which, he adores-James, who is the nephew of our babysitter) and was barely to be seen again. At the end of the night, the girls perform some of their group dances for each other and for the parents.  I sat down & put Elijah in my lap even though he was struggling to get away. The music started, the girls began dancing and Elijah was mesmerized. I got teary. I mean, the boy won't watch two seconds of television, but live dancing had him hooked.  I couldn't be prouder.  He watched 3 straight routines with rapt attention, but by number 4, he was ready to cruise on his own again...well, he is 19 months after all!

This morning (Sunday), we attended a "Brunch with Santa" at my parents' country club.  This is, hands down, the biggest perk about my parents actually having a "country club". The brunch is spectacular- The mimosas and coffee are flowing and the food spread is insane- from made-to-order omelettes to an impressive seafood display.  And while we are enjoying the over indulgence, Santa and Mrs Claus make an entrance and come around to say "hi" to all of the kids!  To be honest, I haven't been sure if Christian is buying our "Santa story". Even on the way to the brunch, Charles was telling some story about the Elves and how they help Santa (mind you, in true Charles form, it was a little... elaborate.  Even I was losing the gist.)  Christian cut him off mid-story by saying, "Okay. Sure, guys. Whatever you say."  Charles and I were cracking up, but it was just a little more evidence that he just wasn't buying it. But, when Santa and Mrs Claus came over to our table, Christian couldn't have looked more pleased, or comfortable, or convinced. (Unlike our experiences with the forced grins and ridiculously bad portraits with the mall Santas...)

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Here, Christian is telling Santa that he is almost as tall as him (as long as he stands on a chair)!!

Later, the kids got their formal picture with Santa and a special surprise: a gift hand-picked for each child! Christian and his cousin Davin got these adorable, life-like (actually, a little freaky-life-like) cats that purr and clean themselves. The good news is, they don't piss or smell, so Christian can keep it!  Elijah's experience with Santa was, well, I think the pictures say it best:



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Pure interest. Didn't matter how many times we called Elijah's name or tried to get him to look at us for the photo. He was sitting on Santa's lap and was completely curious: Who is this strange man in a giant red suit??? "Santa" gave Elijah a little xylophone. Perhaps, he can learn to tink out the tune to "All I Want for Christmas is my Two Front Teeth"...of course, that might just make the matter worse...

I have so much to look forward to over the next few weeks: a little time off from work, some gatherings with friends and family, more yoga (!) due to said time off, some time for new goal setting, and hopefully the time and frame of mind to soak in the holiday moments with my boys. I feel a little more at peace just thinking about it. 

Friday, November 25, 2011

Thankful, but not yet Wise...

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Life is good. My boys are healthy, and for the most part happy, and I am feeling so grateful for it all.  Which coincides nicely with the holiday that is supposed to be all about thankfulness and gratitude.  Yesterday was Thanksgiving and this year we celebrated at my parents' house.  All I had to do was get up, go to yoga class (yay! ME time on a holiday!) and then show up with boys who were clean and dressed, some mashed potatoes & a green salad in hand and then be available to help out where necessary for dinner and clean-up. Considering the insane schedule I've had over the past few weeks, this was luxury.

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From left to right: My Mom's Mom would have been proud: She always wanted a photo of the holiday tables...; My sister made the pecan pie (using Grandmommie's recipe) Mm-mm; my Mom got crafty and made a chocolate cake in the shape of a pumpkin-adorable!; Turkey's ready!



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Mom getting the meal ready; Elijah taking a nap; Uncle Bill, Davin & Christian watching a movie; and My sister & niece checking out the Black Friday deals



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Grandmommie relaxing; Charles pouring champagne; My nephew playing video games; Me- taking pictures

It was a regular holiday- probably not unlike many family's holidays around the country, but I am reminded of how blessed we are to have each other and to have these moments to savor.  One could say that I am on a bit of Thanksgiving high right now.  Not to worry- once the effects of the pecan pie wear off, I'm sure to be back to normal.
Last week at Christian's preschool, the kids were each asked what they are thankful for.  Christian said he was thankful for Mommy and Daddy. (Guess Elijah has been stealing too many of the train tracks during play time to make the list...) So, I feel a list coming on: What I'm thankful for, and What I'm not so thankful for:

I'm thankful for my family. Despite the occasional heat I might get for choosing to....let's say, make mashed potatoes instead of sweet potatoes, they "get me". I don't have to put up a wall or pretend to be someone I'm not.  They actually like and accept me for who I am.  
(Although, it seems yesterday they would have liked me more if I brought sweet potatoes...)

I'm not so thankful for a 14 page Medi-Cal application. 
Let's spell this together: P-R-O-C-R-A-S-T-I-N-A-T-I-O-N.  
I'm getting it done by the time the weekend is over.  I have to.
Even though it sucks.

I'm thankful for my friends.  These are the people in my life who challenge me to be a better person.  The last few years has changed the scope of my friendships- having children has bonded me to people in different ways. For some friends, the commonality of having children has been an incredible bonding and growing life change.  For others, our friendship regardless of children has grown truer and stronger with each passing year.  Differences in our life paths strengthened our relationships and shows what genuine care and respect we have for each other.

I'm not so thankful for having client files go completely missing off of my computer. Seriously.  What the heck happened?  
And before you ask...NO. I had not backed up recently enough to recover that one.

I'm thankful for little getaways. I recently had a fabulous 24 hour getaway with my best friend- just catching up, laughing, eating, pedicures and watching movies and I felt 23 again.

I'm not so thankful for being back from said getaway for a mere 10 minutes before having all former stress return instantaneously. De-stressing completely undone and I'm back to feeling 40 again. Sigh.

I'm thankful for the fact that I have a body with the ability to move in skilled and careful ways.  This may sound crazy, but I reap such benefits from dance and yoga and I appreciate it even more as I am a daily witness to how hard my baby boy has to work to physically accomplish the little things.

I'm not so thankful for how quickly time passes.  I strive every day to live in the moment, and yet those moments are swift and fleeting.

I'm thankful that people sometimes pleasantly surprise you.  I am going to end with this one and share a story that happened recently:
I have written in the past about a Mom at Christian's preschool who I can't figure out.  It seems like she has been blatantly ignoring me for some time and I recently decided to march right up to her, smile, and say, "Hi! How is it going?!"  I got a little insight into that last week.  I was leaving Christian's preschool, when I spot this Mom sitting on a bench with her youngest (in a stroller) at her side.  Upon seeing me, she beams with a giant smile and says, "Hi!!!"  I was surprised, because this is a far cry from how she has greeted me (if at all) over the past year and a half. So, I say, Hi!  She asks, How is your littlest one doing? (Who was not with me at this time.) And I say, He's doing great! He's definitely behind developmentally, but he is a sweetie and he's just doing what he's supposed to be doin'! How is your littlest one? She says, She's doing good.  She is a year old already.
Me: A year already? Wow- the time flies!
She: Well, she doesn't look one year- she's very small for her age.
Me: Yeah, well, Elijah is small for his age too, so I get it.
She: Well...she's really small. She's not even on the growth chart.
Me: I hear ya- Elijah's not on the growth chart either. (Well, technically, I think he is still on the chart, but barely.)
She: Well...we found out that she has Dwarfism.
Me: Oh, really?

(Me internally: Oh............REALLY? So this might have something to do with why I have been getting the cold shoulder.)

We talked for a few minutes more and then I had to go.  But, I left with much on my mind.  I wasn't wrong about the fact that I was getting a cold shoulder, but I was totally wrong about why. The explanations have many possibilities, probably most likely being that when you get news that temporarily turns your world upside down, it's not easy to process.  For all I know, this Mom was avoiding everyone.  Maybe even me particularly.  Maybe because she knew in some ways we had something in common and that might not have been a reality she was ready to accept.  Maybe it looked to her like I had it all handled and she didn't yet.  Who knows??  But I know it wasn't coming from the same place I thought it was. The reality is that she and I DO have something in common: We face the fact that society will see our child as different before they see them as the same. For me, I'm settling into this role.  I've found that as long as people get a chance to just be around my youngest son, they don't see him as different.  They see him as just Elijah.  Not everyone will have the opportunity to spend time with my son, and there will be times (as there already have been) where I am choosing my words to help people understand that different is okay, and even good, and even sometimes...special....though not in the way some might have thought... This Mom will find her way. And along the way, I hope she'll see that I am there for her, because I think being a parent to a child with special needs- regardless of the diagnosis- creates a community of acceptance.

I was surprised by that Mom.  I was pleasantly surprised, and I'm reminded that an open mind and an open heart is the best way to go.  We never really know what someone's circumstance is.  We can make judgements based on how they look and how they act and what they say, but until we really get to know them, we just don't really know. What is that saying? A wise man knows he knows nothing.. ? Or something like that.  Time to remember how little I know...

I'll close with an impromptu photo caught today of my firstborn playing with a bunch of older kids and having a blast. This moment brings into focus all kinds of thankfulness: for the sweet boy I call mine, for the kids who so lovingly took him under their arms, for the beautiful fallen leaves, for the joy that a pile of fallen leaves can bring...

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Wednesday, November 16, 2011

The Buddy Walk 2011

On Sunday, we celebrated our second year of involvement with the DSALA's local "Buddy Walk", a national charity designed to raise money for awareness, education and programs for individuals and families with Down syndrome.  It was a beautiful day.  We met up with 23 of our friends and family members to attend the Buddy Walk this year.  I had goals for this year's Buddy Walk. I was dreaming of a team of 25+, raising funds of $5000, "Elijah's Chariots" team t-shirts and a large prop chariot for the kids to ride in.  Alas, my goals and plans were bigger than my reality to achieve them all.  I had to make a shift in my perspective.  The reality for me this year was that just around the time of the Buddy Walk, I had a wonderful explosion in my business.  Since my business is part of what supports my family, I have to make it the priority, despite my best intentions to fulfill all of my other goals.  I put aside the idea that I fell short of my goals, and looked to what did happen:  Our team of 23 raised $2,160 and showed up with smiles on our faces this last Sunday.  I owe a huge thanks to my brother, Bill, who took initiative with the fundraising and added $915 to our overall donations!!  Thank you, Bill, for being a great brother, a great friend, a great Uncle and turns out...a great fundraiser!! (I never doubted that for a second!)

The vibe this year was much different than last year.  I was relaxed and looking forward to spending the day with my team and seeing friends from the Ds community. Last year held a little more anxiety.  It was nice to be rid of the anxiety and able to just enjoy the day!

Our Team, "Elijah's Chariots"! (Though we couldn't manage to rally every member for the group photos...)
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These shoes are made for walkin'...
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Friends (clockwise): Lori and Lila, Kathy and Maddie, My brother Bill and Elijah, Denise and Kiersten
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Elijah was a happy camper- great weather and a group of people who love him.  What more could a little guy ask for?

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The "Walk"...which is really more like a parade.  Frankly, after a busy work week, I was thankful for the short and relaxed stroll!

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Christian and Elijah (!!) taking a little ride in the miniature jets.  They both loved it!

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Everyone doing the walk- including baby Della- the youngest team member!

I am so grateful to everyone who donated and supported us in the walk, and especially so to those who came out and showed up for us in person!  I want to thank: My Mom and Dad, who just never hesitate to be there for us and would do anything to show their love and support for Elijah; My brother Bill, who rearranged his entire work day to be at the walk with us, helped raise almost half of the funds, and who is all around just a great guy; My best friend Denise and her daughter Kiersten who are like family to me and always find a way to make my day brighter; Kristi, my dear friend, who despite a thousand other commitments on Sunday showed up simply because I asked. She rocks.; Kathy and her family- Eric, Abby and Maddie. This time last year I was just getting to know Kathy and now she is one of my closest friends.  She is true blue and never ceases to make me laugh; Lori and her daughter, Lila who I've know since our firstborns were 6 weeks old. I couldn't have made it to where I am without her support and I love her to pieces; My friend Amber, her husband Bill and their baby girl, Della who I have laughed with, cried with and prayed with. It is a blessing to have them back and living in LA again- right where I like them to be!; Judy, her husband Jason and their two little ones, Tanner and Travis.  Judy and I have known each other for close to 4 years now.  We bonded over trying to get the "pre-baby body back", but found substance in our friendship as life threw us challenges we weren't expecting; Last, but definitely not least, my hubby Charles and our babies Christian and Elijah.  I never knew how full and rich my life would be before you. My heart literally hurts with love and gratitude for you all.  My boys don't read yet, but one day I hope they will stumble across this blog and despite the many mistakes I'm bound to make as a Mom, will know that they are loved. Truly. Madly. Deeply.

The Buddy Walk 2011 was joyful and relaxed and infused with love.  I'm not sure that can be topped.

Until next year...
When we have T-shirts.

...And a CHARIOT.

Wednesday, November 9, 2011

A Mother's Intuition

All day long on Monday, I felt the on and off need to cry my eyes out from relief.  I blame my busy schedule for not really allowing me the chance to just break down.

Sunday night, after an amazing weekend with my family, we were sitting down to dinner all together.  I had made a Jambalaya, and had prepared enough for everyone.  Even Elijah's was blended down a bit to make for easier eating and dampened down so it wasn't too spicy (though he seems to enjoy a little spice and kick to his food I've noticed...) I sat down, took a spoonful of food for Elijah and fed it to him. About 1 second later, Elijah started crying inconsolably and coughing as though he were trying to get something up.  He didn't let up and the crying got worse.  It was obvious his airway wasn't blocked, but I took him out of seat, held him at a severe angle facing down and gave him some stiff blows to the back just to see if he was trying to get something out. ....Nothing.  I did a blind swipe of his mouth to see if there was anything in there that was stuck, and...nothing.  I thought I felt a tiny hard piece about the size of a grain, but couldn't really tell, and in the process, ended up causing Elijah mouth to bleed.  I felt horrible and was really starting to get panicked.  It was clear that nothing was obstructing his airway, but I thought maybe something foreign had gotten into the food, or he's picked something up from the floor beforehand and had squirreled it away.  Perhaps something small, but sharp was lodged in his mouth?? 

We piled into the car and headed for the ER at the local hospital just around the corner from us.  I was probably equally as worried about Elijah being exposed to something in the ER, as I was about what was going on, however we were too worried to have done anything else.  We were seen by a nurse shortly after arriving.  I told her what was happening, and about how his mouth bled when I did the blind sweep.  She told me that the tissue at the back of our throat is so sensitive, that even a gentle sweep can sometimes cause bleeding and to try not to worry that I had done any real damage. We were led back into an ER room and began THE WAIT.

A female doctor eventually got to us and at first glance at Elijah (who was temporarily calmed in my arms) said, "Why is this labeled in orange?? Orange is an emergency and he seems fine."  As soon as I peeled Elijah off of me, he began wailing and coughing again.  I explained what happened and also mentioned that he has Down Syndrome and that if something is in his throat it might make it harder for him to get it out because of his low muscle tone. She said, "He doesn't look like he has Down Syndrome."  ........Ummm, o-kay.  I decided to just simply say, "Well, his physical markers aren't very severe, but he certainly has it." They decided to start with an xray.  Both Charles and I were skeptical that an xray would show anything.  It wasn't as if he'd swallowed a quarter (We've already been through that one before with Christian!) and anything Elijah would have access to would probably be of a softer or even more environmental nature (a sharp leaf from the floor, a piece of gristle from the Jambalaya, or even something plastic, but we went along with it.   Christian stood with Charles while I held Elijah during the xray.  Even though Christian was in good spirits during this whole adventure to the hospital, he was clearly distressed. He clung tightly to "Leo" (the favored stuffed Leopard who is his inseparable playmate and alter ego.) The waiting continued and it grew later and later.  Around 9:30pm we were told that the on call pediatrician would come down soon.  I knew "soon" was relative, and asked Charles to walk home with Christian so he could get him to bed. (Luckily we were only about 3 blocks from home, so a walk was not an impossibility.) I waited another hour and began to worry that I wasn't going to be able to do this all by myself.  I couldn't even go to talk to a nurse and ask how much longer it would be, because Elijah was attached to the monitors and I couldn't just leave him on the hospital bed and walk away. My cell phone wouldn't get reception for calls, but I was able to get a text out to my Mom, who arrived at the hospital even before the pediatrician came down.

The pediatrician confirmed what the other doctor had told us, which was that the xray didn't show anything out of the ordinary. I informed the pediatrician that Elijah has Down syndrome and my concern was that something the xray wouldn't see could be lodged in his throat, and because of his low tone, he might not be able to get it out.  The doctor asked if he had any heart problems.  I said, "No.  Luckily his heart has always been perfect."  Elijah was beside himself.  I was sensing confusion and over-tiredness making the situation worse. The pediatrician said we would get a Barium Swallow Study and that should show us if there was anything at all in his system. He said, "We're going to admit him, but let's see what the Barium study shows."  We were led into another part of the hospital and 20 minutes later the on-call Radiologist showed up.  She was surprisingly young and had a very genuine energy about her.  I was worried that in this state Elijah wouldn't even drink the Barium to allow the study to work.  Luckily he took a few good sips, and then I supplemented with a little syringe of the Barium also.  There was nothing.  The doctor said that she was confident that there was nothing blocking or obstructing his esophagus and we should get home and get him some rest. I told her that they wanted to admit us, and her first response was, "Why??" Interestingly enough, this was the only doctor I didn't inform about the Down syndrome.

We went back to the ER to wait some more and I started getting impatient and told a nurse, "Listen, we want to go home.  Who do I need to talk to?"  The nurse looked shocked. "But, I thought they were going to admit him."  I told her that the Barium Study showed nothing, and I can't imagine what we would be admitted for.  It seemed clear that Elijah was in some sort of pain, but there was clearly nothing in his system to worry about obstructed airways or anything that was extremely dangerous.  At that point I was sensing that whatever happened ( a sore throat made worse by some spicy food?  some small scratch at the back of his throat?) was just made worse by the fact that he was 5 hours past his bed time the day after daylight savings time. The nurses scrambled and said we would have to talk to the doctor.  30 more minutes later the original female doctor who helped us came back in and said, "I understand you want to leave, but I think he should be admitted."  The conversation went something like this:
"Why do you think he should be admitted?"

"Well, we should monitor him to keep an eye and make sure he's okay."

"But the Barium study showed there is nothing stuck, so why wouldn't he be okay?? At this point I think it's worse for him to be here.  He's 18 months old and it's midnight.  He needs to get some good sleep and he's clearly not going to be getting it here."

"Well I think he needs to be monitored and if you want to take him home then I would need you to sign an "Against Medical Advice" paper, because I think it's dangerous for you to do so.  I'm just trying to do what's best for your baby."

"Yes- well I'm his Mother, and I'm sorry- but nobody in the world knows him better than I do. I'll sign the papers."

"Okay, it's just that I've seen a lot of crazy things happen and I'm just trying to do what's best for your baby."

"I'm sure you have. Let me ask you something: Do you have kids?"

"Yes I do, actually."

"Then, you know what I mean about the power of a Mother's intuition.  And while I'm sure your experience is different from mine, being that you are a Mother and a Doctor, I know what I know when it comes to my baby. We might be back here first thing in the morning, but I'm taking my baby home so he can try to get some sleep tonight.Why don't you get us the papers so we can get out of here."

We waited another 15 minutes for the paperwork and this is what it said:
"I believe your baby should be admitted for observation to monitor his heart and respiratory status. You would like to take the baby home against my advice that could result in worsening of his condition or possibly even cardio pulmonary arrest."

WHAT???!!!!  Now it's his heart???!!!  And then  I realized IT, as my mind quickly clicked through the sequence of events.  Two simple words (besides Hospital Liability) are...Down syndrome.  Funny how that doctor didn't even think it was worthy of an "Orange" emergency label when she first came to see us.  Then  the xray showed nothing.  Then the Barium study showed nothing.  But, both she and the pediatrician asked me the second after I mentioned the Down syndrome: "Does he have any heart conditions?"  Even though my answers were no, Elijah's diagnosis makes him a bigger risk for them.  But...I. know. my. baby.
Better than anyone else.
(And it didn't hurt anything that my Mom was there-who probably knows him third best of all- and she thought I was doing the right thing too.)

I took him home, put him to bed and he was asleep 2 seconds after his head hit the mattress.  He slept all night, woke up at his usual time 7 hours later, ate breakfast, took a bath and was back to his happy self without a moments glance backwards. The hospital has two little words that make all of the difference for them and I have mine...Mother's Intuition.

I'm glad we went in, because it gave me peace of mind to know that we weren't dealing with some foreign object lodged in his throat.  We'll never completely know what happened though, because Elijah's not old enough to tell us.  So, I listened to my instincts and decided to stand by them, even though it was really hard.  It was really hard to stand in the face of someone who is telling you that they are trying to do what's best for your baby. It was really hard to stand firm and strong and know that I know what I know...even though I don't have proof.  And ultimately, my intuition was right.  My intuition has always been right.  Which doesn't mean I've always listened to it...

I'm feeling emotionally drained, but needed to get this experience blogged about so I can move on.  Since my time has been so scheduled down to the second, I have not had one minute to myself.  And there are a few people we love deeply on the East Coast who, I know, would love to see these:

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My littlest dragon.  I don't think there is any taming this dragon...I think he's the one doing all of the taming in this costume.

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My Blue Sea Dragon.  Christian set his mind on being a dragon, wanted Elijah to be a dragon too, and chose this costume as his favorite.  

His choice set the stage for our family costume...

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The princess, her knight in shining armour, and two cunning little dragons.
AKA Me and my boys.

Wednesday, October 19, 2011

Life goes on

My life has been a series of unexpected shifts, where I have had to continually check and adjust my expectations.  About 2 years ago, I got the news that my baby boy would be born with Down syndrome, a genetic (read: happens on the gene level.  Does not necessarily mean hereditary.  Just thought I would highlight that often misunderstood conception.) condition which causes mild to moderate intellectual disabilities and developmental delays, which affect things like gross and fine motor development and speech delays. Frankly, I thought my life as I knew it, was over.  I was willing to go for the challenge, but with a saddened heart, thought that all of the hard work I had put into starting my own Event Design and Coordination business would be laid to rest.  I know...maybe it's silly.  But, that's what I thought.  And when I stepped away from all of the random and impersonal Google information I could find, and started connecting via blogs, to real-life families, I started to realize that these people have lives.  They even have big, successful careers in some cases.  I was surprised by that...and hopeful.  I got a shred of hope that I wouldn't have to entirely retire my beloved business. 

Now that my little guy is almost 18 months old, I realize that life isn't all that much different than it was before.  There are some changes- some changes to schedule and more than anything, some changes to perspective. But, ultimately having a business with a baby who has special needs is...well... exactly like having a Baby while having a business.  The special needs part is simply like a few extra appointments on the calendar. I make time for 3 therapy sessions a week for Elijah, and starting next week, that is jumping to 5 therapy sessions a week.  For now, they come to our home and work around Elijah's schedule, so it's not especially disruptive to his general schedule.  I like this time- it's quality time with Elijah, time to learn new tricks from our therapists and a great outlet for me. I realize that these therapists are not technically there to council me, but they "get" what I'm talking about, and that's nice.

My thoughts about how having a child with special needs would define my life are on my mind, because I've had a big week for my business.  A colossal week for my business.  I've taken on a business partner who I know will have as much passion and work ethic as I have had and I am no longer running this one woman (and a few assistants) show! I can actually look forward to the future of the company and begin to put the ideas and dreams I had for it's future into play.  Prior to this week, my brain stopped at how I was going to squeeze a single extra task into my schedule. I used to wonder how and when my dreams could possibly come to fruition when I was doing it all. by. myself. ??? I'm beside myself with excitement.  I have help, I have people I trust, and I'm energized to get it all under way!  We're also starting a blog, which I'll announce to the readers here, so you can follow our progress if it interests you and maybe even get some inspiration for some of your own parties.  Another good friend of mine is going to help me manage that and infuse it with lots of creativity and inspiration, in addition to sharing what fun, new events we've been up to.

Well...that is all for now.  My head is spinning.  I have new logos and fonts on the brain. I have plans for the future on the brain.  I have...too much on the brain and need to work to shut it off for a little while.  Does this happen to you?  The brain spin??  What do you do to calm your brain and settle down? 

Mama needs to get some sleep.... :)

Wednesday, October 12, 2011

Hot Potato

My son Elijah has an issue called "Tactile Defensiveness". It's a sensory "sensitivity", which  is I guess, one way to explain it.  Basically, he doesn't like the feel of certain things in or on his hands.  It's partly why he scoots around on his belly using his forearms and toes, instead of pushing up to a crawl position on all fours.  He doesn't seem to love the feel of all of the weight in his palms.  He does push up to all fours now (newish milestone), but he doesn't use it as a mode of transportation yet.  He eats baby puffs like a pro now, but if you drop a little food on his high chair tray, he immediately swipes at it and throws it off as if to say, "Ew! Yucky! Get that off of here."  It's frankly a little reminiscent of that old game, "Hot Potato", where you have to try to get rid of the potato as fast as possible.  The self feeding is slow going. The day we'll be able to go to a restaurant and plop down a few pieces of fruit, some beans and a couple of crackers and just let Elijah eat on his own will truly be a day for glorious celebration- because it feels like that day will never arrive.  In fact, I looked at our Occupational Therapist this week and said, We have to get him to be able to eat some cake by his second birthday. He will be able to eat cake by his second birthday, won't he? She can't promise me that he will, but she did promise that he'll get there eventually.   That eventually he'll do it all. For now, he's making progress and the progress is huge. (Don't forget to pause the music player at the bottom of the blog before watching the video...)



I don't get a chance to talk about my feelings a whole lot.  I'm too busy. I'm raising boys, running a business, working a job and trying to make enough time for my husband, myself, and my friends so I don't lose my mind by going without free time.  In those times of getting together with my friends and family, I don't try to avoid my feelings or avoid talking about Elijah and how I might be feeling about his progress.  It's just simply that I run out of time.  What's first and foremost in importance to me is the catch up- the fun, reportable news about a new craft project or how hard yoga was last week or the thing that my hubby said that pissed me off (Okay...not MY hubby.  But A Hubby. Anyone's Hubby. The generic idea of a hubby who might possibly piss someone off. Not me, though. ...Not you either. Just need to cover my bases and make sure I point out that these are hypothetical things I might catch up on. You get it.) Since time usually runs out before I can even get to talking about  how I might be feeling about Elijah's progress, I end up saving it for my blog.  It's semi-cathartic to write it all down, and even though I usually don't hear back from 99% of the people reading this, I have some hope that by putting it all out there that maybe I'll give some perspective that wasn't there before, or possibly reach someone who is feeling exactly like I am- because there is comfort in that.  As much help as it is to write it all down though, it's really not enough all of the time.  I need feedback. I need someone to remind me when I'm having a down moment that Elijah is perfect, but that everything is going to take longer.  And that just because it takes longer doesn't mean he won't do it all.  That one day I will look back and think, I should have cherished it even more than I did. But, I just don't seem to have time for these conversations. So, I stay up late with a glass of wine water (...okay, wine), sit down in front of my computer, and then just write.  Usually I'm a little surprised at what comes out.

I made a commitment to myself to be honest and upfront about my feelings on this blog. There is a lot that I censor myself about.  I censor myself because I don't want to hurt people's feelings.  Sometimes, however, I will hurt someone's feelings by talking about my own.  I am not always going to say the perfect thing- in life or on this blog. You are not always going to say the perfect thing either. (Again, a hypothetical "you") We will not always say the right, or the perfect thing.  That is because I am human and flawed.  In the past when I've talked about real-life scenarios for the sake of processing them or sharing them for others to process, I have inadvertently hurt a few people's feelings. I know this because they told me. One person even told me she can't read my blog anymore. This is tough for me. I have a lot of feelings about that, but I'll censor saying why. 

Real life scenario: I hold my breath everytime I go out in public with Elijah, dreading when the question is going to come..."Oh how cute! How old is he?" When I say 17 months, I watch the wheels spinning in that person's brain- adding up why he isn't walking or talking yet. Sometimes people will go so far as to ask if he's walking or running or talking yet.  Usually I just say, "No. Elijah has developmental delays, so it'll take him longer to do all of those things."  I find that strangers handle this more gracefully than the words, "He has Down syndrome so it'll take him a little longer to do all of those things."  I was at my mechanic last week and I had both of the boys with me.  The guys were joking with Christian and admiring Elijah when the dreaded, "How old is he now?" question came up.  Since I actually know these guys a little bit, and Christian even goes to school with one of the mechanics' sons, I gave the whole answer and told them that Elijah has Down syndrome.  They, like most people, didn't know anything about Down syndrome and had a lot of questions/comments.  There was the question of severity. He doesn't seem to have a very severe case of it. I always have to take a little breath before commenting on this one, because I really don't want to come off sounding like I'm trying to school someone or embarrass them or sound condescending. I shared that a person either has Down syndrome or they don't.  There is no level of severity to it. Down syndrome is simply the existence of an extra chromosome in a person's cells. There are varying levels of cognitive ability and some people with Down syndrome can do a great deal with their lives: graduate from college, have a job, get married, while others are more dependent on a caretaker.  The reality is that we just don't know what Elijah's cognitive ability is yet because he's too young.  What I do know is that he seems pretty darn smart to me.  He "gets" a lot of things.  He is interested in and motivated by people, and quickly and easily reacts to them.  I feel that he will have a great deal of cognitive ability, and so I say that (in this case, to the mechanics.) Immediately they seemed to relax. The idea of someone "suffering" or being "disadvantaged"  (which Elijah is neither, in my opinion) is like the game of Hot Potato. People want it off their plate.

Trips out in public are sometimes a little more awkward, and I don't always want to answer the questions, but I get a sense that it's great for people to be seeing Elijah- that he is changing minds about how much of a "sob story" it is to have Down syndrome.  I keep off of the heavier issues and save my feelings about it all for those cherished few conversations and this blog.  And although the following pictures have absolutely nothing to do with this post, I just have to share a few cute ones we took with the boys last weekend.... :)

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And my favorite one...

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Oh yeah....and when I went to go pick up my car, the mechanic gave me 50% off.

Hot Potato?

Wednesday, October 5, 2011

Elijah's Chariots

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It is that time of the year...the annual "Buddy Walk" to support the Down syndrome Association of Los Angeles is just around the corner!  The Down syndrome Association of Los Angeles, or DSALA, is a non profit organization devoted to enhancing the welfare of people with Down syndrome and their families through the development of education, counseling, employment and recreational programs.  They are also committed to helping increase public awareness, understanding and acceptance of Down syndrome.

Last year, Elijah was just 7 months old when we participated in the Buddy Walk- not knowing what we were getting ourselves into.  We had a small, but mighty, group of close friends and family participate in the walk with us...which is really a slow trot around a track- we might be talking about a quarter of a mile here. Certainly, we're not participating in a physically challenging race. ha ha! (Click here to read about our experience at the Buddy Walk last year.)  The Buddy Walk this year is coming up on November 13th at the Santa Anita Racetrack and I am beginning the wrangling. Last year we witnessed so many creative and loving ways that families supported and honored their family member with Down syndrome.  We saw heartwarming T-shirts, signs, and even a Pirate ship float to carry some adorable little boys!! (Yes- Sarah, if you're reading, I now know it was you.  Which is so funny, because I didn't know you then.  But, I should have figured that anyone who was going to go to the trouble of making a pirate ship float and wear pirate garb, were my kind of people!!!) So, this year, I've re-vamped our team name.  It was formerly "Team Elijah", but this year is "Elijah's Chariots".  I kind of liked the multiple implications of the name: In the Bible, Elijah never actually dies.  He is escorted into Heaven by chariots.  Kinda love that.  Then, there is the idea that that our Elijah isn't walking yet.  I like the idea that we will be his chariots for the Buddy Walk this year.  Double entendre anyone? :)

So, the time is nearing, and while I have visions of a chariot float (Note to self: Add to the Honey-Do list asap...), T-shirts with some "Elijah's Chariots" logo on it and signs bearing my youngest's contagious smile, I need to turn to you-my family, my friends, and my readers (perhaps just a fancy way of saying my friends and family. LOL!)  for some help.  I have always been the type of person who loves a good cause.  Whenever I can, I'm donating to friends' races for Breast Cancer or Wheelchair Missions, Multiple Sclerosis and Sjogren's campaigns.  However, until I needed the support and aid of a great cause, I didn't have a true and personal understanding of how much these non-profit organizations can do.  Now that I do, I am putting my heart into it.  I am asking anyone who reads this to consider putting your heart into it also.  If you are moved, consider clicking on this link and donating a small token to aid a great and worthy organization:
http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=487077&lis=0&kntae487077=D95D291532A1402AB196A7E6DE0A3C7A
If you are interested in joining our team and participating in the walk with us, we will welcome you with open arms.  Email me if you're interested and I haven't already given you a hard pitch. :)

P.S. Chariot and Chariot themed ideas welcome!  Come on...You know a Party-Planner-by-trade-Mommy isn't going to go all subtle on you now, right??

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New tricks: Frequent popping up onto his knees; Loving the bounce house

Wednesday, September 28, 2011

Struggle

Why is it that when you start a day off on the wrong foot, it seems impossible to avoid the rest of the day from becoming a complete dump?  Yesterday was one of those days- despite my best efforts to "reset" and move on.  Today isn't faring so well either... Instead of becoming a broken record of woes, I'll remind myself that Struggle can't be avoided. No matter who you are. No matter how "zen" you try to make yourself.  I'll remind myself that it has been through the struggle, that true clarity and growth has happened.  Now, my yesterday and today struggles are all little things: waking up late and running 10 minutes behind for the rest of the day, a pissed off client, a lost ipod, a rude customer service guy while trying to pay mortgage (Not sure anything makes my blood boil more...), etc. However, it's often the little things that get under your skin the most. It's on days like this that I need to counter with the things that calm me down and set my world back on it's axis.  Focusing on my kids is the quickest way to Now.  Kids just live in the moment.  They may anticipate big events and look forward to them, but basically, they are in the moment. Right now.  When did it become so hard to stay in the now?  When did we begin to need things like yoga in our life to bring us back to center? When we got married? Bought a house?  Had a kid?  It's happened so gradually over time that I can't recall when or how it got so difficult to lie on the floor and just be.  My mind races a million miles a second of what I need to be doing, what I haven't done, mortgage, taxes, insurance, school, how to be a better Mom, how to be a better Wife, how to be a better person...  I find myself connecting with friends on Facebook often.  It may seem out of the blue to state that, but the reason is this: There is comfort in knowing that I'm not alone, and that I'm not the only one who struggles, or has a bad day, or has a beautiful day that I just have to share.  Social network has it's own problems, I know.  But to know that Thea has a headache, or Lori's baby boy is rolling over, or that Kathy was finally able to upload all of her photos is a small gift of the everyday.  The idea that we are all in it together.

While I'm struggling to remain in the present, my boys just are.  As a result, I get surprised by what they're learning and what new tasks they're accomplishing.  We had a phenomenal week with Elijah again.  This little guy is on a roll.  In addition to working on pulling to a stand, pointing, and sitting strongly now, he also shocked and surprised me with pointing out prompted body parts.  I knew that he knew where my nose was, but I threw in "eyes" and he pointed right to them, then I said "mouth"- pointed right to it, "head"- pointed right to it.  We hadn't even been specifically working on these things!! (Call it second time Mommy brain--I sometimes completely forget all of the little things I obsessively worked on with Christian, and then think "Oh yeah- I should show Elijah how to high five."--which he does, BTW.) :) We also finally got the clearance to add an additional day of Physical Therapy.  So now he'll have PT twice a week, OT once a week and the Child Development Therapist once a week.  I have been pushing for more PT, because that is where he's furthest behind.  It's all good...he'll eventually "get there".

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Climbing into cubby spaces and standing up!

Christian is becoming a little man in his own right.  He asks the most interesting questions- ones that are challenging to explain.  Like "How do the telephone poles work?"  Yikes!  I barely know, and then to realize that there is a whole other system designed to make cell phones work, and do I explain that too??...Keep it simple, Jen. Keep it simple. After I finish my explanation, he usually says (while his eyes show him processing the information), "Oh.  I see."  Really??  :)  You do??  He and I have had a good week- I got to take him rollerskating for the first time with a couple of friends as a fundraiser for his preschool and I gave him his first haircut with a pair of clippers. (I have always cut his hair- with scissors- and thought I should try the clippers but was just too nervous. Thanks to a new clipper set from my Grandmommie, I took the plunge!)

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Does the boy know how to take a great "before" and "after" picture, or what??!

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First skates, with friend, Abby

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Considering the rink...

I will continue to take a time out from work to sit and play on the floor with my kids and be reminded  of what life was like before the endless swirl of events started happening in my head, I will continue to make it a priority to get to my yoga practice- both for the physical benefits, but also for the mental practice of being in the moment, and I will continue to struggle- sometimes despite my best efforts.  Maybe I'll even update my Facebook status.  Perhaps it should read:

Jennifer Garrett-Currier is.
(Underline, italic and bold the IS.)
Too bad Facebook doesn't have an underline, italic or bold feature.  You know this Mama likes to use them...

Monday, September 19, 2011

Bragging Rights

I had to immediately brag blog.  Elijah started pulling to a stand today!!!!! It's been a banner week.  It all started with my realization last Monday that Elijah would sit (without immediately crawling out of it) as long as he was sitting on wet grass.  So, Monday, Tuesday and Wednesday, we had at least 30 minutes of straight sitting each day (on wet grass).  By Thursday, he was sitting anywhere (No grass necessary)-content not to crawl right out of it.  But today was a biggee.  Today, he started pulling himself up to a stand right in front of my eyes (And our Child Development Specialist's eyes- It was nice to have a witness!!) As long as he had something to give himself a little leverage and with the tiniest of help positioning his feet, he was pulling up!! This afternoon, I was steadying him so he didn't collapse back down, but by TONIGHT, he was standing pretty strongly.  Strongly enough, in fact, that I was able to get these pictures:

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I can't believe it!  I'm honestly surprised by how quickly he started moving into this milestone.  I knew that even though he wasn't achieving any big milestones for awhile there, that he was gaining strength.  That strength is coming through today and with some good motivation (Mommy cheering squad & brother in the bath) he was bound and determined to do his thing.

After Elijah's bath, I got him into PJ's and read him his stories (Tonight, BTW, he pointed to the Puppies and used his little pointer finger to push the buttons that make sounds in one of the books-another little milestone), then put him into bed while I turned my attention to Christian.  Christian and I finished up his bedtime routine and came walking into their room to discover that Elijah had pulled himself up onto his knees and was hanging out on the railing of the crib!!!

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All. by. himself!!!!!  I have been trying to show him how to do this for a little while now.  He was always so excited when I would get him into the position where he could see around the room, but tonight he managed it himself!  I had trouble getting a good picture of this- in part because of the low lighting, but also because Elijah was bouncing on his knees with excitement.  Perhaps a video is better suited for this moment (Don't forget to scroll to the bottom of the page and pause the music player.):



The week was amazing--not only because of the many milestones that Elijah is tackling right now, but also because of the many things happening for Christian now too!  First of all, Christian is loving school this year.  It is so nice to hear how much he loves it.  He even asked on a day off if he could go to school.  One day last week when I came to pick him up, he wasn't quite ready to leave and sat down where they do circle time in his class.  He sat back on his hands a bit, took a deep sigh and said, "It was a really great day, Mom."  My heart melted just a little bit.  It was so great to hear that, especially when last year's start was a little rough. 

On Friday, I took my first Elementary school tour in preparation for Kindergarten for Christian next year.  Our local public school is an under achieving school that is in really sad shape (I'm not referring to it's physical condition, though that is sad too.) So, I'll be having to apply by lottery to local Public Charter schools and by Open Enrollment for other nearby public schools.  It's going to be a push to get him in somewhere that I think he might be able to get a decent education.  So, I took my first tour.  Beside the crocodile tears that were welling up behind my eyes, it went pretty well.  There is a lot to think about, and even though it would be easy to shut down over the amount of information I have to get, I feel strongly that I need to stay on track in getting applications in once that process begins.  I'm sure there is going to be a lot of nail biting in my future...

Friday afternoon, I took Christian for his first Hip Hop class of the year (He tried it last year, and due to...lack of focus, we had to say nevermind.) This year I had high hopes that a year's worth of maturity would go a long way.  Well...we will see.  There was still quite a bit of not paying attention, but there was some following of directions...

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The teacher gave me a wink after class and said that Christian got a sticker and promised he would listen more next week.  Gulp.  Here's hoping...

The funny thing is, as soon as class was over, I asked Christian to show me some moves and he was happy to accommodate!


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Pretty awesome if you ask me. My boy may not be the most focused in class, but when he applies himself, he's got some Moooves!!
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