Thursday, December 30, 2010

Merry Christmas and a Happy New Year!

I've been reminiscing about our Christmas holiday...we're finally on "vacation", somewhat relaxing at Charles' Mom's house in New Jersey ("relaxing" is always subjective with two kids...) and feeling the need to get caught up on a little writing.  Christmas this year was, in some ways, the best it has ever been.  Christian is old enough to comprehend Christmas, an idea of Santa and an appreciation of gifts.  It was pretty magical to see his reactions to it all!  For me, the holidays have become more vibrant, more fun and more meaningful since becoming a Mother.  It's not just about me and what gifts I give and get anymore.  It's about helping to create traditions and painting a picture of what Holiday means.  Although I can never do the holidays the way I see it in my minds eye: decorations up seconds after Thanksgiving, Holiday cards completed and mailed early enough for people to actually enjoy, cookies baked (with the help of my son- who wouldn't melt down or insist that the cookies be eaten BEFORE baking...), and all gifts perfectly selected and purchased well in advance (including those for teachers and therapists).  No. It did not happen like that. Honestly, it may never happen like that.  I seem to have misplaced my team of personal assistants and holiday elves...oh well, guess we'll have to keep doing it imperfect-style.  However, the house DID get decorated...and some fun was had while doing it; the holiday cards were completed (with only a couple of addresses misplaced)- and I truly had the best time putting our card together this year; gifts for the most important people were bought and shared (hopefully it's the thought that counts actually COUNTS to those teachers and therapists I thought of, but never actually got around to buying anything for...); and we managed to share some amazing meals with close friends and families on the days that were special to us.  

Christmas Eve- Looks like Santa made it. Guess we all made the Nice list:
Photobucket
(My favorite touch was the hand colored gift tags- designed by Christian)

Christmas Morning:
Photobucket
(My boys in their matching PJs, Christian is showing Elijah how his gift from Santa works)


The day after Christmas we gathered up our giant one bag to be checked at the airport and our small individual carry ons: Charles with his computer, Me with a small bag with one change of clothes for me and each of the boys, diapers, wipes, and the arsenal of STUFF necessary for traveling with kids, and Christian with his new bear from Santa tucked into his backpack.  All were ready to get on the big, exciting airplane to go back east to see Grandma!

Photobucket
(Christian's new bear from Santa, named Seuss.  This was the very first time he chose a name for an animal that wasn't the very obvious, "Bear" or "Dog" or "Cat".  I didn't even suggest it, I just asked, "What is the bear's name?" and he replied, "Seuss."  And so it is.)

We managed to get out the door at the semi-appropriate time, got checked in to the airport and should have pressed further when the guy standing at the counter next to us said, "My flight to Philly has been canceled." Gulp. That's where we are going.  The ticket agent assured us that, no, our flight (with a stop-over in Vegas) was scheduled to depart on time, with no cancellation. Hm-mm.  


When we arrived in Vegas, we found our transfer gate and were immediately greeted at the gate with an announcement: "Due to extreme weather on the east coast, this flight has been delayed until further notice.  We will know more by 9:00pm tonight." (It was 1pm.)  Then, mere minutes later, an announcement stated, "This flight has been canceled."  Charles got in line to get us re-booked on the next flight out, while I called a few old friends in Vegas.  It has been awhile since I've seen any of them, and although I feel that we've remained in decent contact as a result of facebook, I haven't actually seen any of them in an embarrassingly long time.  My messages must have sounded like this: "Hi!  It's been ages! How are you??!  So, listen...I happen to be in the Vegas airport with my two kids and hubby and it looks like we'll be here for quite some time.  Any chance you're around and can get together?"  Ugh.  Luckily, my friends also have kids and have resorted to "keeping in touch" as a quick comment or status update on facebook too.  Both called me back, and both were willing to get together and rescue us if at all possible.  My friend, JP, lived the closest and happened to have access to two car seats!  Without a moments hesitation, she said, "I'm there for you, friend." and picked us up on her way home from work.  I shudder to think what our night would have been like had she not come through for us.  Instead, we hung out, drank wine, ordered in pizza and let the kids run around terrorizing each other.  It felt like home.  JP and I realized that it has been just over 5 years since we've actually seen each other. Yet, she looked exactly the same.  Sadly, I don't think the same is true for me.  I feel like the last two years have done a number on me. More bags, more wrinkles, more body fat (but I'm gonna blame the young baby and BFing for this one)...Oh my!  We got a good night's sleep and headed out the next morning (after the red eye flight was canceled too).  We heard news that the storms had stopped where we were going and were hopeful that the day would go smoothly.  Then, we arrived at the gate.  Our 9am flight turned into a 1pm flight. Considering how long we had to wait in an airport, I thought everyone did pretty well.  I faced a bit of a dilemma, that I think with be an on-going theme: When and how much to tell people about Elijah.  We sat talking to a nice, elderly guy named Jim, when he asked, "At what age do babies start talking (he doesn't have any kids of his own)?"  It's a strange thing to grapple with.  Elijah is much more than just his diagnosis, so I don't want to blurt it out before it's even necessary or important.  In this case, I said, "Well, Christian started speaking some words around 8 months of age.  Elijah has Down syndrome, and so he will have some developmental delays, most likely in the area of speech, so we're not really sure when he'll first say things.  For now, he's a really vocal little guy and we have fun interpreting his sounds."  Because I felt fairly comfortable with what I was saying, Jim seemed comfortable too.  I hope that I was able to communicate how I feel, which is that Elijah has a diagnosis that will cause developmental delays, but he's much more than his diagnosis to us.   It becomes trickier when it's a fly-by-night comment: I noticed a woman with a toddler and a young baby looking at Elijah.  She said, "I'm trying to figure out how old he is."  I said, "He's 8 months, but he's a tiny guy." She said, "8 months??  Wow. my guys is only 5 months and he's already bigger than that."  I said, "Yeah, he's a little guy."  Then went back to my sandwich.  I know that I have and will get some looks, like Does she know there might be something wrong with her baby? But, I kinda don't care.  Not every situation requires an explanation.  I don't have to explain Elijah to anyone.  The interesting thing is that this isn't bothering me too much.  I guess because Elijah is such a joy to us- I don't feel a need to explain him, make excuses for him, or chalk him up to his diagnosis.  He's just ELIJAH.  


Once we finally got on the airplane and took off for Philadelphia, we breathed a sigh of relief until I tried to play a DVD for Christian on my laptop.  Apparently, I've never used my DVD player and never downloaded the appropriate programs to make it run. Crap.  Charles and I both started to panic.  Then I thought: Wait a minute.  People have done this before.  They have actually gone on airplanes with 3 years olds and NOT shown them a DVD.  We'll just do it old-school style.  It was completely fine.  And I got to see a really beautiful thing: the way that Christian and Charles interact over those "guy-things".  Airplanes, trains and cars is kinda their "thing".  Charles takes Christian to see cool bomber airplanes, takes him by the local Metro station just to watch a train go by, and describes the "cool factors" of all of Charles' favorite cars.  That "thing" kicked in on that airplane.  Christian wasn't as happy to share it with me.  Instead, he'd excitedly shout, "Daddy! Daddy!  What's that? Look!", as he pointed out the window.  Charles would explain it in terms that only a rocket scientist could understand, but Christian seemed content with that.  A slight nod of his head, as though, Yeah...that makes sense...  


We arrived in Philly just after 8pm to find that our ONE checked bag (that we paid $25 for) never made it with us.  Put a fork in, and Charles was D.O.N.E.  We waited for the luggage claim center, we waited for ground transport, we waited....and waited... The order of best to worst traveller went something like this:
1. Elijah
2. Christian
3. Charles


Eventually we got to Charles' Mom's house and breathed a sigh of relief.  Christian was thrilled to see his Grandma!  He had much to tell her and called her by name frequently.  It was like music to all of our ears.  In past visits, Grandma has come, inevitably, when Christian was going through some sort of "Terrible Two's phase" or an "Even more Terrible Three's phase".  I kept insisting, "No, really.  My child is not a complete jerk.  He's just going through a phase."  Finally, Grandma believes me.  He has been a ball of energy and excitement, but the minute his head hit that pillow that night, he was OUT.  We woke up the next morning to take in the sight of what the storm had done.  It was a breathtaking sight.  So, we suited up and got outside!

Photobucket


Photobucket


Photobucket


There has been sledding, snow angel making, snowman building, igloo construction, and walks in the snow.  Both boys seem to love the snow.  Elijah's snowsuit was packed in our missing luggage, so we've only just put him into it- he's been baring the elements in bundles of sweaters, hats, mittens, and blankets.  Tonight, he donned the snowsuit.  I will post a picture soon.  It is too much. Prepare to be blown away by the Cute.  He's so tiny being stuffed into it, that when you take him out, he's like a tiny Russian nesting doll after you've removed the outer doll to reveal the smaller doll within.  Seriously.





Photobucket

We have just a little over one day left here, and will celebrate New year's Eve with our good friends Ken, Susan, and Isabel in Philadelphia.  (We keep in touch on facebook...)  :) Then, back to LA LA land.  Our trip back can't possibly top the one coming here....Right???!!!




Now that I've had a little down time for just enjoying the ups and downs of my family, I'm ready to start focusing on the New Year.  I think some resolutions are in order.  Maybe if I write them in my blog, I'll feel a little more accountable to make them happen... We'll see...


Hope you all are enjoying the perfectly imperfect holidays with the people that mean the most to you!

Sunday, December 26, 2010

One year blogiversary- Stranded in Vegas

Today, one year ago, I started this blog. I planned some quality blog time to get caught up on the holidays and all that has happened recently. Well...this is not quite the time or place I thought I'd be today. I had plans for a lightly snowy arrival at Charles' Mom's house, where I'd still be wide awake despite a long travel day... Ha! Best laid plans, right? No, a snow storm on the east coast left us stranded in Las Vegas with two kids, a handful of luggage (not all, of course) and no real idea when, or even if, we'll get back home. So, here we are. Luckily, I made contact with an old friend, with two young girls of her own, who was willing to come rescue us from the airport. Thank God- because all flights to the east coast have been canceled tonight! We're booked on a flight in the morning and with any luck our trip back home will resume 24 hours later than we planned. I've been pretty balanced today...Elijah is a dream, and Christian fared well with our adventure (a couple of meltdowns in the airport, but luckily nothing too drastic.) I refused to get worked up today. And it wasn't a bad day. So, Kumbiya friends. Kumbiya. And Happy Blogiversary to me.

P.S. Posting from my cell phone. I really do not recommend it. A more concise post with pictures is soon to come...

Monday, December 13, 2010

Giddy-Grateful

I should warn you now: I tend to go through these completely giddy, grateful, so-happy-with-life-phases, and I'm sort of having one now...It's not that everything is perfect.  Because it's not.  And frankly, it never will be.  I don't really believe in Perfect.  Perfect is what someone else's life looks like- from the OUTSIDE. Real life, and real living, is messy and imperfect, but still sometimes so giddy and wonderful, for no-reason-at-all.  I am just loving life right now.  Today I was told:  "It is amazing how much your boys love life- both of them.  You can see it in the way they get excited about small things and even more so in the way they look at you.  It isn't hard to see where they get that- because you look at them the same way."  (This is paraphrased and smooshed together from a lengthier conversation.)  What I hope is true is that my passion for living is contagious to my children.  We are not wealthy, and we might never be, but both Charles and I chose paths in our lives dictated by passions and what we love about life.  I like to think that this is a good key to keeping life in perspective.  I think at this time of year, it's especially important, but sometimes difficult to keep it all in perspective.  We want to give our children everything, but not literally everything. As a parent, my challenge is to find a way to make the holidays special without all of the stuff losing it's meaning.  This year, no matter how many times I ask Christian what he wants from Santa, he says, "A bear."  That's it.  I love that.
...Not a fully automated, ride-on miniature Hum V...in black (like I saw this weekend at one of my events).

We had tickets to a great Brunch with Santa, this weekend.  The food was elaborate, there were costumed Christmas Carolers, and then there was a photo-op with Santa, who gave each child a toy (pre-provided, so as to fulfill a "Santa's wish list").  We went with my Mom and Dad, and my sister's youngest, Davin, who is only 6 months older than Christian.  The boys had a blast.  Seeing Santa was the absolute highlight, and Christian tore into his present.  He was SO excited when he saw what it was: a puppy stuffed animal (who barks and wags his tail), complete with a puppy crate, and a full grooming and veterinarian set up.  It's adorable, and Christian hasn't put it down since.  By the time we saw Santa, Elijah was over it.  He was tired and cranky and didn't give a hoot about an elderly man in a red suit.  He was d.o.n.e.  But, he did like his little car stacker toy and impressed me while playing with it tonight.  I held one of the cars up, and showed him how the wheel spins.  He reached out- straight for the tire- took a little grab, and spun the tire!  I nearly cried...okay, I did cry.   It's not that I don't expect him to do these things, it's just that I have so thoroughly checked my expectations at the door right now, that I get caught off guard when he achieves a milestone or does something so smart, like copying me in some way.  I like that I'm not worrying about why isn't he doing this or why isn't he doing that...it's almost as if Down syndrome gave me a free pass to just wait and see.  BabyCenter.com sends me weekly updates of what my baby should be doing now.  I don't read them.  What's the point?  Half the time, my completely typical older son didn't do "what he might be doing now" milestones in those books and online updates. So, why would I stress myself about it when I know Elijah will have delays.  It's kind of freeing.

Photobucket

Photobucket

Photobucket

Photobucket


I have reached a milestone, of sorts, myself.  Two years ago, I went through the certification process to become a personal trainer so that I could teach for a new Stroller Strides location.  Stroller Strides is a Mom and Baby fitness program that I fell in love back when Christian was a baby, and so I jumped at the chance to start teaching for them.  Unfortunately, between the costs of re-certifying, the time constraints it puts on me as a Mom of two, and the TLC that is still needed to get that location off the ground, it just isn't making sense for me anymore.  I'm a little sad about it, though.  It's probably just a small realization that you can't do everything- even when you love it.  So, I'm hanging up my teacher sneakers and will go back to just working out with the girls at the other location, on occasion.  Sniff. Sniff.

Some of the most exciting news we've had in awhile is that we'll be going back east to see Charles family right after Christmas!!! Yay!  I realized that we haven't been there since before Christian could walk.  And a further realization was that we actually didn't do any out of state traveling in all of 2009...?? Is that true?  Wow.  So, a trip back east is very exciting.  We're keeping our fingers crossed for snow, since neither of the boys have really been in snow before.  We're even stocked up on super warm snow outfits, just in case.   It's funny- I was so worried about traveling with Christian as a baby , but I'm not too worried now...maybe I should be, but I think we've got good ages for it this time around.  Christian is old enough to think it's exciting, and a few phone games and maybe a DVD or two should help do the trick.  Elijah is such a cuddle bug and can't get around yet anyway, so really it shouldn't be too bad.  The hard part is just going to be the actual, physical carting of everyone and everything.  I try to think of it as just a hard day of work.  In a confined space.  Where people can give you the evil eye.  Eh-whatever.  It'll be fine.

See? There are benefits to being a second time Mom...

Monday, December 6, 2010

December 4th

On Saturday, I acknowledged an anniversary of sorts.  One year ago, on December 4th, 2009, I received a phone call revealing my amniocentesis results were positive for Down Syndrome.  I literally thought that life as I knew it was over.  I woke up every morning for quite some time, cracked just one eye open and hoped that someone would say to me, "Don't worry.  It was all just a bad dream.  This didn't just happen."  Instead, when I managed to pull myself out of bed, I started trying to find other people who have been in my shoes.  They didn't say, "I'm so sorry."  They said, "CONGRATULATIONS!!!  It will be a better journey than you could ever imagine."  I somehow began to feel early on, that everything would be alright and that maybe something good would come out of this."  Turns out, that is true on many levels: First of all, if nothing else came out of this, I got Elijah.

Photobucket

Photobucket

But, I did get something else. I got a more personal understanding of what a life's challenge might entail...and how it moves people to act, to Do...to Improve.  A few months ago, I volunteered to be a part of a committee that puts together an annual fundraiser to benefit an organization called Down Syndrome Research and Treatment Foundation (DSRTF) and it turns out that the benefit evening was held this year, on December 4th.  I couldn't help but feel some irony in that.  The event from a committee-member's perspective went VERY well.  A lot of companies and a lot of people really stepped up to make a commitment for a worthy cause. (Extra special thank yous go out to Sandra at Royal Events, Julie and Ernae at Blue Cupcake, and Rocky and Mike from Rock Star Entertainment!)  I got a chance to "play" with the floral decor and had a blast making the semi-empty residence that it was housed in, feel cozy.  Putting aside my "event mode", as a new Mommy of a baby with Down syndrome, I was blown away.  Because of my son's condition, I am getting to be part of a generation where science is making groundbreaking progress.  Never before in the history of Down syndrome, have these kind of miraculous discoveries been unearthed.  As one of the world's leading researchers on Down Syndrome, Dr. Lynn Nadel said, "Down Syndrome is finally cool."  And Cool is good.  Cool is important in the world of science.  Because Cool gets you noticed.  And Noticed means that other researchers are willing to band with you in the name of a major breakthrough and pharmaceutical companies suddenly see dollar signs and are willing to take you seriously and begin the courtship, accordingly.  The very short, layman's understanding of it all (which is all I have!) is that the treatments that are already working in their mouse models, significantly improve cognition.  There are also potential treatments in the works that will be able to freeze and reverse the memory damage that occurs in Alzheimer's patients.  (Something like 99% of all individuals with Down Syndrome, end up with early onset Alzheimer's.)  The event for the DSRTF was called "One eXtra reason to live, love and hope" and I can tell you how perfectly suited that name really is.  I have a good amount of hope that one day my son will not have to worry about Alzheimer's disease.  I have a good amount of hope that there will be options and possibilities for improving cognition for my son and others like him.  I was really blessed to be a small part of this event, especially so, on the anniversary of the scariest news of my life.  I was surrounded by my parents, my best friend, and a room full of other parents who know my story, because theirs is nearly the same.  It was quite a juxtaposition from last year. 

Some of the "Beautiful Minds" involved with DSRTF:

Photobucket
From left to right: Dr. Michael Harpold (CSO of DSRTF), Dr. William Mobley (UC San Diego), Dr. Ahmad Salehi (Stanford School of Medicine)

Photobucket
Na'eem Salaam (DSRTF), Dr. William Mobley, Dr. Lynn Nadel (University of Arizona)

And a little bit of my hard work for the event:

Photobucket
Even though the Peonies and Lilies didn't open as they should have, it looked beautiful...


It was a chalk-full weekend where I didn't get much of a break, but it was the kind of weekend that leaves you feeling pretty high on life. I'm ready to crash but still need to do one more feeding (the dream feed, for those of you who have been there) with Elijah before I can completely crash.

But, I'll leave you with this:  (Thanks to my photographer brother-in-law, who fit us into his busy schedule. Thanks, Jake!)

Photobucket
There was an error in this gadget