Bad Mommy

Can I start with a sigh?  Elijah had his 8 month well-baby check up yesterday and gained a whooping 3 ounces. Three.  Three???!!! In a month??  Sigh.  I am at a loss.  I asked our pediatrician for a thyroid check because I know an over-active thyroid could be a reason for low weight gain, so the nurse came in, put the strap on his arm and started looking for a vein...and looking...and looking.  Then, she asked another nurse to come in and help by holding Elijah's arm so she could focus on the looking.  Then they both looked...and looked...and looked.  Then the doctor came back in and he looked and...You get the picture.  And before anyone comments to tell me that they must not be very good at taking blood, I want to assure you that is not the problem.  The bottom line was Elijah got stabbed at, a try in each arm, without so much as a full pin prick of blood coming out.  He was crying screaming, and I was doing everything in my power not to cry myself.  The doctor and nurses basically shrugged their shoulders and said that they didn't have the heart to just blindly jam the needle in and dig around until they hit something. Yeah...that doesn't sound like a very good plan to me either.  Our pediatrician decided that he's going to check with all of the labs to see if anyone can do a micro thyroid screen based on a heel stick.  Then we discussed what to do further about getting him to gain weight.  I went back through what I am already doing: I nurse him 6 times a day (every three hours) and he gets 2 servings of solids 2 times a day, which just recently became three times a day.  My pediatrician assured me that he is getting plenty of fluids, but there is a possibility that my milk isn't caloric or fatty enough for Elijah to gain more weight.  We decided that I would try reducing the nursing to three times a day and giving the other feeds with formula.  I hope this helps.  I have been really resistant to trying this until now, because ANY formula supplementation can affect your milk supply- even if you're pumping.  What would have been the worst case scenario to me, would have been to compromise my milk supply only to find out that the formula didn't help with the weight gain anyway.  However, now that Elijah is 8 months old and eating a lot of solids too, I'm not as worried about him being exclusively breastfed.  I will continue to nurse to make sure that he's getting all of those helpful antibodies from my milk- after all, along with Down syndrome comes a compromised immune system (not to mention how the facial muscles benefit from the nursing), so any extra help in that area is good.

So, I am working hard to shake the Bad Mommy feeling.  It's the strangest thing how being a Mother, especially in the infant months, triggers a very primal response:  The desire to feed and nourish your child.  To prolong life.  To help your child thrive.  When he isn't thriving in a comfortable range, it makes me feel like it's my fault.  My milk isn't good enough. I'm not good enough.  I comfort myself with the fact that it's not for lack of trying.  Much of my world has been about feeding this kid.  I have thought through every equation: how many feeds, what kinds of food, how often, surrounding conditions. You name it. Plus I have access to a ton of professionals to make sure I haven't left a stone unturned.  In every other way, Elijah seems the picture of health: he's content, he's smiley, he's a great sleeper, he plays, did I mention that he smiles a lot?  A starving, unhappy baby does not smile a lot.  See how I seem to keep justifying myself?  Primal, people. Primal.  It might not be rational, but it's what I'm feeling. At least I have a plan now.  I do much better with a plan.  I'm a plan kinda girl.

Today, Elijah started his first real schedule of therapies!  We had both Physical Therapy (PT) and Occupational Therapy (OT) today, although they will normally be on different days (one session could only fit us in today this week, but next week we'll begin our "real" time slot).  Elijah did GREAT!  I thought the therapists were both knowledgeable and professional.  I've already learned a few good tricks and have a few goals for the week set.  It's awesome.  I am finally taking a big breath of relief that we are in the system and getting started.  I really think Elijah is ready, and today proved it.  He lasted a good 40 minutes in each session before he started complaining.  He complained more in the Physical therapy than in the Occupational, but that was to be expected.  The OT was especially helpful because part of their expertise is in feeding.  I told her the situation and she didn't seem worried about any of it.  When I explained how Elijah eats, she was pleased to hear everything I said.  I also told the PT what was going on with Eli's weight gain and she seemed even less bothered by it than the OT.  She even seemed skeptical that I needed to supplement with formula.  But, I'm not comfortable without a plan, so I'm taking my plan and sticking to it. In two weeks were going back to the doctor for a weight check, so I think I'll have some idea if it's helping or not.

It's been a big week for Elijah and I.  What he feels...I feel.  I can't believe how wrong I was as a child.  I would roll my eyes whenever my Mother would say, "Believe me, this hurts me more than it hurts you!"

Sigh. 


This moment made my week. Christian is becoming more and more involved with Elijah, and in this shot, he was insisting that he needed to hold him. He couldn't be a more proud big brother and although I couldn't catch a good shot showing how much Elijah loved it too...he did. However, I think I loved it best of all.

The wrong person is super skinny

Elijah has his 8 month well-baby check up tomorrow.  I'm dreading it just a little...because they will tell me how little he's gained... It always starts out the same way: The nurse measures and weighs him, and says, "Good job, Mommy- he weighs 12.8 lbs!!" Then I groan and say, "Oh no! He only gained 6 ounces??"  She looks back at her notes..."Oh... yeah... Well, he grew 1/2 an inch!"  She's a lovely, positive, smiley nurse. And I'm pretty sure that she has stopped writing down how far off the typical weight chart Elijah has fallen.  She just writes 3% with a little pointing down arrow drawn next to it.  It is so frustrating. It is so beyond my control.  His head circumference is the same as his weight percentage, so it's not like he's anorexic, with that lollipop head syndrome (Note: You may be familiar with this look made famous by a few under-fed Hollywood actresses. Their bodies are emaciated, but their heads are normally sized.)   He's eating.  He's actually eating a good amount: He nurses 5-6 times a day and has been taking 2 solid meals, which I just upped to 3.  He eats a full 4 oz. at each solid feed.  I just don't know where he puts it.  I've requested a thyroid check at tomorrow's visit just to make sure there isn't a thyroid issue at the heart of it. (Apparently thyroid problems can be quite common in people with Down syndrome.)   My pediatrician is awesome.  He's very calm about the whole thing.  When I asked him at the last visit if it was okay that Eli was so small, he just shrugged his shoulders and said, "What are you gonna do?  He's happy...He's healthy."  (I liked his response to my same question the time before too: "What?  Do you want him to be carrying you in here next time?")  Most people have an image in their heads about what people with Down syndrome look like, and overweight is usually one of the characteristics associated.  The fact is, that people with Down syndrome have low muscle tone, also called hypotonia, and the low tone carries with it a lower metabolism.  It all becomes about balancing diet and exercise.  Hmm, I've heard that somewhere before...Oh yeah!  Everyone has to balance diet and exercise or risk becoming overweight.  What is also very common with babies who have Down syndrome, is a slower growth rate.  In fact, they have their own growth charts.  Even so, Elijah is low on that weight chart too.  We'll see what he weighs in at tomorrow, and then I can truly panic.  He looks so skinny to me now.  But, he also looks like he's grown in length.  In this equation, he is not the one who I had hopes for "thinning out".  Hello New year's resolution: Operation Pre-baby body?  Not going so well... (Until today.  I've mostly eaten soup....  And I'm starving!)

This part of the post comes with a warning: If you are in any way, someone who shies away from "Too Much Information" - abort reading now.  If you are someone who is nauseous at the thought of #2s, BMs or any such nick-name for taking a dump - abort reading now.  (Laura F., This is where you turn off your computer...) Otherwise, here we go...
Elijah is constipated.  He was call-the-doctor-in-the-middle-of-the-night-on-Sunday, constipated.  I had flash backs to my one and only (Thank you Lord!!) bout with true constipation shortly after Christian was born.  The memory of that agony was a large part of why I decided to forego all drugs during and after my labor and delivery with Elijah...but I digress. Elijah is constipated and it was awful and painful for him on Sunday night.  He cried, I cried.  I was desperate. He was desperate.  There are things I did and was willing to do that I never would have dreamed of before becoming a Mother.  I'll leave it at that.  All of you Mothers out there know what I mean.   He finally managed to pass these Gigantor rocks that were in his system, but we have been fighting it since then.  It does seem to be getting a little better each day.  It should...he has been on a diet of breast milk, prunes, and pears and any combination of the three for the last 3 days.  Charles said that last night while I was at work, Elijah passed one more harder stool, but then it was softer.  I questioned: How soft? What did it look like?  How big was it?  Was it little? Was it a lot?  Was he in pain?  How did he act afterward?  Needless to say, Charles did not have the answers or detailed descriptions I was looking for, so until I witness another BM, I have no idea where were at with this stuff.  But, I will tell you this: Despite my baby boy's difficulty and pain in having a BM, once he got one out and had a little break, he looked right up at me and gave me a big grin.  Trooper, I tell you.  The definition of Trooper, really.  God, I love this boy.

On the home front, we managed to get back from our trip back east a few days ago, but not without one last hurrah of drama.  We landed safely at LAX, got our bags (this time!) and then lugged the bags and the boys out to the shuttle stop to pick up our car.  Then, we got the bags and boys into the car, took a deep breath and said, "Okay everybody.  We're almost home!!"  Cue the bad news, as the car won't start. Dead Battery. 
Really.
So, then we called Triple A, who came out 20 minutes later, confirmed that it was the battery that was dead and replaced it for us at only 4 times what the general cost of a car battery is.  Whatever.  We wanted to get home and he warned us that if he just jumped it for us to take home, we could be risking the health of the alternator.  With my car luck, I said, Nope.  We'll go ahead and have you replace it.  THEN, we got home.  It was home sweet, filthy home.  There is no such thing possible as leaving a house clean the day after Christmas when you're preparing to travel with two small children.  I dare you to say otherwise. However, the filth was a huge motivator.  By the next day, I had the Christmas tree down, all lights and ornaments packed up, the boxes put back into the garage and even the outside lights down all by myself (which is not really saying all that much, considering our dazzling display of Christmas lights included about a 20 ft stretch that surrounded our front porch.  Yeah kids, we aim to please. My husband clearly is not trying to keep up with the Jones'. Ha!)   So we're de-Christmased and the house is clean-ish. Christian walked in after I finished the living room and said, "Wow.  It looks good in here!"  Why, thank you my little man.  I do appreciate the compliment.

Yesterday, Christian came into the office where I was fiddling with my emails, sat down on the couch, took a deep breath and said, "We're home, Mom.  We're home."   It is always sweet to be able to travel and visit family and friends, but there is something very comforting about arriving home.  Plus, we get the best of both worlds: we're back home and we only have to wait a few weeks until Grandma takes a trip out here!! This was lucky timing as she happened to have a trip planned to visit a cousin in San Diego and is taking the train up after that to stay with us a few days.  I think more than any of us, Christian will be thrilled!

Now, I'm off to stuff my face, because soup is just not cutting it and my pre-baby body will have to wait another day.  If only I could trade places with Elijah: I could be the one who was super skinny.  I'd probably be okay with that...

The Growing Year

This has been a year like no other for me... a year which has pushed me, challenged me, stretched me, and grown me...with the pain of adjusting to unexpected news, the ache of love moving on, and the unleashing love that comes as a result of seeing the Bigger Picture more clearly. There are years I look back on as standout years- not usually because they were particularly good or easy, but because I grew the most, I learned the most and I became ME, the most.  This was one of those years.  There were times where I felt stretched beyond what I could tolerate, but the gifts and joys and rewards were more immense than I ever imagined.  No...2010 wasn't an easy year, but it was a standout year. Maybe THE year.  The year I will look back on and think, "That's when it happened.  That's when I got one of the biggest lessons in life. That was one heck of a year."  The highlights- and my ode to 2010- are:

My pregnancy and the adjusting to our baby's Down syndrome diagnosis. At this photo shoot I began to reach out and meet other families who gave me a knowing look and said, "Just wait. You'll see... Our children are a blessing and a gift and your son will probably teach you more than you'll have to teach him." I think they might be right...

My family and friends embraced me and our baby boy with beautiful, thoughtful, charming baby showers. I felt them reach out to us in a big way to say, "We're here for you- no matter what."

We had to say goodbye to my first "baby", our dog, Buddy. He was pure joy, pure unconditional love and the greatest companion a girl could ever ask for. He saw me through the bulk of my adult life, to date, and was my crutch through both good and difficult times. I miss him everyday. He is still very much in the forefront of our thoughts.

Just two and a half weeks early, our beautiful baby boy, Elijah Patrick Currier was born and arrived through a natural childbirth, unmedicated into this world. It was the most beautiful experience I have ever been a part of. Despite his diagnosis of Down syndrome, he was born with no organ defects. Although we endured a 7-day NICU visit due to low oxygen saturation, we were able to bring our baby boy home to complete our family. He is my biggest inspiration. He amazes us each day of his young life, proving that a strong spirit and contagious smile are life's biggest attributes.

My biggest little man, Christian, turned 3! Watching his personality and sense of humor develop is nothing short of amazing. Although we definitely hit some patches of the "Terrible Threes", he manages to charm us and most people around him on a daily basis. He is a compassionate friend and a wonderful helper around the house. We are very proud of him.

I hit 39 this year! GULP. When did that happen??? I celebrated with a small gathering of close friends and then a wonderful family party to top it off. I am truly blessed by the people in my life.

Christian started preschool! Even though I cried the first three days of school, he adjusted well. He loves his teachers, Teacher Judy and Teacher Stephanie and talks often about the kids in class. I'm in awe of everything he is learning!

Some of the other things remarkable about 2010 that cannot go unmentioned are:
An amazing job teaching ballet with the best staff and students anyone could ever want!

A full year of teaching and bonding with all of my Stroller Stride Mamas...these ladies are remarkable. Thank you Mamas for enriching my life in so many ways!

My joining of two book clubs. Not only have I read more than I have since college, but I have gotten closer to some of the most inspiring and genuine friends I could ask for. We have intellectual conversations and a TON of fun. You ladies ROCK!

My best friend turned 40 this year. Again...where did the time go? It seems only yesterday that...well, no, let's face it...it feels like a lifetime ago that we were 21 and 22 years old living in our little two bedroom apartment in Sherman Oaks!!!

The 24 hour getaway!! My good friend Karen and I acknowledged that we were well overdue for a break, took leave of our families for 24 hours, checked into a near by Four Seasons Hotel and drank wine, watched movies, ordered room service and gabbed until the wee hours. Although our lives get crazy, I truly cherish our long-standing friendship- even if a month passes without the time to catch up. She is like a sister to me.

Our trip back East to see Charles' family. It has been over 2 years since we've seen some of the family and despite a very difficult trip getting there (and getting back...), we enjoyed spending quality time with them. It was especially fun to see Christian's connection with his Grandma! Plus, there was SNOW!!!!! It was the boys first experience with real snow, and I've kinda missed it too!





The blessings of a busy year for my Event Business. Even though I sometimes complained about the stress of running a business and balancing a family, I was grateful for all of the wonderful events that I had the pleasure of making (hopefully) just a little more beautiful. There are too many to name, but some of my favorites are here:







So, I am officially donning 2010, the Growing Year. Thank you 2010 for all of the ups, the downs and the in-betweens that brought me to where I am today. Now...here's hoping that 2011 has great...but maybe not quite so big, lessons to learn! I need a little time to keep adjusting to the ones 2010 threw at me!

Even though I am not a big resolution person (maker or keeper), I thought it was fitting that 2011 start off with a few goals. They are:

1. Continue to find a better balance between work and family. Prioritize. Prioritize. Prioritize.
2. Get my pre-baby body back!!
3. Treat myself to a fabulous pair of heels...even if I have no place to wear them. Then, create a scenario where said pair of heels is worn!
4. Girls Trip! I've been wanting to do some sort of a girls trip, and I think 2011 is the year to do it!
5. Listen to my instincts- particularly when I feel certain people or situations are too draining. Life is too short to waste the energy!

So there it is. In writing. My 2011 Resolution list- a mix of serious and fun...just like I'm hoping 2011 will be...

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:

(My favorite touch was the hand colored gift tags- designed by Christian)

Christmas Morning:

(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!


(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!










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.







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!

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...

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.










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...

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.





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:


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


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

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


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!)