It's a....

BOY!

Looking on the bright side of things, because of the unique situation we're in {I suppose one would call it that} we got to find out gender super early through this really cool blood test.  And in my book, the earlier the better b/c I'm a planner - so from the time the geneticist called to give me the news to the time Nick came home from work at 6:30 - I had everything picked out.  Nursery decor, paint and fabric samples and furniture all ordered.

Many have asked {or maybe have wondered and too afraid to ask} 'what if this baby has Duchenne too?'.  That's an absolute possibility - VERY small - but possible.  As you may or may not recall, I am not a DMD carrier.  Sam's genetic mutation happened spontaneously, so this baby has a 4.3% chance of having Duchenne.  4.3% is a tricky stat to think about...4 PERCENT (or per 100) is 1 out of 25 {embarrassed to say someone had to explain that to me}.  And since Sam's condition happens to 1 out of 3500, thinking about it that way seems daunting.  One out of 25 is way more likely to happen than one out of 3500 - and we already have the least likely scenario on our hands!  We brought this up at the last appointment we had with Sam's doctor.  He assured us {as did the genetic counselor we've been seeing} that this 4.3% is actually a very small risk. Without getting into it and confusing everyone - the percentage is taken out of completely different group.  The number they gave us comes from the number of women who are not DMD carriers, who have a son with DMD, who have subsequent sons with Duchenne.  So it would be very rare if this boy had it as well.  Get it?  yeah - I'm still scratching my head.  But since we've already won the lottery from Hell, we are having genetic testing done on the baby immediately after delivery {we'll have a genetics team there to collect the cord blood and send it off} we don't want to be surprised 4 years down the road again.  Knowing as early as possible about a potential DMD diagnosis is what we as a family need.

Kids are super excited...now.  The video below is of me telling the family {including Nick}.  Notice Sam's fist pump and Caroline slapping her forehead in disappointment.

Since we didn't find out the conventional way via ultrasound, I got the phone call from our GC and I kept it a secret.  The only person I told was the lady who made the cake balls.  I kept it a secret for 2 days.  Longest 2 days.  Ever.

Nick and I are excited because Sam will finally have a buddy.  Someone who can look up to him.  We hope Sam is his baby brother's hero.  Can't wait to see what Sam can teach him.

New Years Eve Surprise

So - I've been noticing some puzzled looks on a few folks' faces lately.  The kind of look where you know what they're thinking, but they don't want to say it in case they offend you.  I love that look!  It's so funny - becasue you know they're thinking "did she just finish eating 10 cheeseburgers? or is she pregnant?" - and I'm too much of a bitch to say anything b/c I love watching them try to figure it out.  

No - I am not getting fat.  Well, technically I am - but not because I just ate 10 cheeseburgers.  Yet.

Yes - I am pregnant.  14 weeks.  And while I'm still baffled, especially with everything going on with Sam, I still wonder how it all happened.  (for the record, I know HOW it happens, but really - how did this happen!!??).  This was SO not in the plan.  At all.

With all the doctors appointments and stress that occurred in November involving Sam, I clearly wasn't paying attention and may have had 2 Manhattans one night.  The night, apparently. So around Christmas, after getting all the Santa gifts out and getting into bed, I realized that I might be a day or two late.  Didn't think too much about it.  Then on our New Year's trip to Alabama it hit me - I was seriously late.  So I hopped in the car and picked up a pregnancy test (or six).  The thing didn't even take 5 seconds to indicate it was positive.  So naturally, I took 5 more.  All positive.  Shocked doesn't even describe it.  I was literally laughing like an insane person in the bathroom.  Not funny ha-ha laughing; scary, evil laughing that could only be described as someone who's just been committed to an insane asylum.

So, I was living in denial for a few weeks, thinking about how I haven't had to change diapers or wipe butts, or get up several times a night to feed a screaming infant in years.  Caroline and this new baby will be over 8 years apart!  What is wrong with me?  This was not the plan.  We were done.  I absolutely HATE being pregnant to top everything off.  I'm uncomfortable, I'm sweaty, I'm tired, I'm sick, and I'm not very nice to people (and I'm sure Nick would agree).  I totally get how some women love being pregnant, sadly I am not one of them.  Then we get Sam's DMD diagnosis, and I'm filled with even more doubt - how am I going to handle everything with Sam and a newborn?  How selfish was I to take away the few good years I have left with a physically capable Sam to take care of another baby?  All I knew is that at that moment in my life, a baby is something this family did not need.  Thinking back, I was so emotional and heartbroken over everything else, I forgot one thing...It's a baby.  I've done this before.  And I think I've done a damn good job with the two I've already got.  Anyway, by the 3rd kid the other kids practically take care of each other, right?  Sam is fine right now.  He's not going to be in a wheel chair in the next 6 months - or even in 6 years hopefully.  This will be okay - or so I keep telling myself.

Panic began to set in as I start to worry what if this baby has Duchenne too?  So I went through some genetic screening to see if I'm a carrier.  To my surprise, and I think to Sam's neurologists as well, I am not a DMD carrier.  While we're not in the clear yet, even if this baby is a boy the chances of another DMD diagnosis is very rare.  I think 4%.  We're still going through with genetic counseling and will get a full genetic screen on the baby before he/she is born to either give us peace of mind or to prepare us for another baby with a genetic disorder.  

So, that's my dirty little secret.  I'm knocked up.  Again.  Nick and the kids are so excited.  I've been very slow to come around, but am finally looking forward to #3.  I get to go shopping - because about 6 months ago I gave away EVERYTHING baby.  Get to decorate a nursery.  For once I'm not the one this year giving the baby showers.  There is good in it and I see it more and more every day.  No matter what, this baby will bring so much joy to our family who has dealt with too much pain already this year. 

Numb

It feels like this just happened yesterday.  On January 11, most of you reading this blog know that Sam was diagnosed with Duchenne Muscular Dystrophy.  Until now, it has been difficult to put it down in words what exactly is happening and how I'm feeling.  The question "how is everyone doing?' is such a loaded question because I never know how I'm going to answer it.  I could be fine or I could completely lose it.  I love that people care enough to ask, its just so hard to answer at any given moment.  So for those of you who have asked and I've avoided the question (or you've avoided asking me), here it is.

My son will most likely die in his 20's.  Rarely do men who have this horrible disease have families and grow old with someone.  I'm pretty sure that's something a mother should never have to hear.  There are so many hopes and dreams you have as a parent that you hold on to as your child gets older.  In my opinion, it's what keeps you going when your kids are being rotten turds.  I feel a flood of emotions - some rational, most of them not.  I have good days and bad days.  There are days when I just don't care who's calling because I don't feel like talking about anything - I just want to stare at the TV and not talk.  There are days when getting out of bed is the hardest thing I've ever had to do.

I'm mad.  How could this happen?  How is it that we prayed and prayed and prayed and He didn't hear us?  I'm mad at God - and as stupid as that sounds it's the only thing that makes sense to me right now - and I'm ok with it.  Don't really care if people agree with that or not.  I'm mad at my friends with boys who will never know the struggles Sam and our family will face.  Being angry is part of grieving, it will eventually pass.

I'm sad for Caroline that she knows what her little brother is going through.  I wish the conversation we had with her explaining it all never happened.  The kid's not oblivious - she knows, and she flat out asked Nick and me "is my brother going to die?".  I'm sad for my family and friends to watch what we have to watch until Sam is taken from us too soon.  I'm sad that I feel like I can't ever have fun again.  I mostly feel sad for Sam - he really has no idea b/c he's too little to understand.

I'm scared that I can't be strong for Sam when he needs me to be.  I'm scared what this will do to my relationship with Nick.  I'm scared that in a few years, our friends will eventually stop calling or hanging out because they don't know what to say or do b/c they're uncomfortable with how Sam's disease is progressing.  I'm scared to go to a support group.  I'm scared for my sweet boy who will probably get teased because he's different.

There has been an overwhelming number people calling or emailing or bringing us dinner and groceries.  People who I barely know are donating to the MDA Walk or coordinating a fundraiser.  People I went to school with, whom I haven't spoken to in over 15 years offering their support.  Nick's brother and wife recently went to DC for the MD Care Act Reauthorization meetings and to advocate for Sam on Capitol Hill.  It's so unbelievable.  We are so touched.  I know that we are loved and that does help when I'm having a rough "Sam day".  When asked how we're all doing I tell them we're okay, but honestly it's never going to be okay.  Ever.  Eventually there will be a new normal around here, but right now the wounds are too fresh - I'm just not ready to be okay.  Staying completely numb is the only way I can get through a rough day.

Digging myself out of the darkest hole I've ever been in has been such a growth experience and having hope is the only way to stand up again.  There is hope for a cure and that the things I'm so terrified to watch Sam go through can be stopped before it's too late.  I know it won't happen tomorrow, and unfortunately, having patience is something I am lacking.  We go back in March to see his doctor and We'll get some more insight into everything since we barely remember the appointment in January.  There is a good chance that somewhere out there, Sam will qualify for a clinical trial that is right for him.  He's taking steroids to help keep him strong.  He wears leg braces at night to stretch his tight muscles while he sleeps.  He has taught me so much in the last 6 weeks about being brave and strong when you don't feel like it.  We are doing everything we can for him right now.  Even though we're devastated, we are fighting for him.  I encourage anyone who knows Sam or who has ever loved a child to fight.  If you have some spare time, please visit a page we set up for Sam on the Parent Project website here.  It's a site that is aimed at finding a cure for Duchenne.  The website is full of information about research and programs and groups that fight every day for Duchenne boys.  

Sam being silly while getting fitted for his braces.  

So there you have it.  Do I sound crazy?  It's ok to think so - I think it sometimes too... The healing process for receiving this kind of news takes its toll and it takes time to move on.  I think that's difficult for others to understand.   Apologies if I haven't responded to emails or phone calls - I have read and listened to every single one of them.  We're all okay for right now.  Taking it one day at a time is how we roll these days.

Holiday re-cap

Well, my post for Christmas never happened.  And while I'm fessing up to things, my New Year's post didn't happen either.  So I'll do a quick re-cap of all of the festivities.  

It all started the weekend after Thanksgiving when I forced all of us on a family excursion to find the perfect tree.  Our foyer is easily 25 feet tall and in it there is a perfect spot for a gigantic tree.  This house was built for the tree - trust me.  And to give Nick credit, he really strives to out-do himself every year.  This year, the tree wasn't quite as big as it's been in the past, but it was straight - and that's a difficult feat in itself.  We didn't even scream or yell or cuss at each other trying to put it up.  So the only way to get this huge thing home was to put it on top of the jeep, because it wasn't going on top of my new car.  Clark Griswold style.  It was pretty hilarious.  

Clark and his 13 foot tree

I can't believe this is the only picture I got of the tree.

The week before school got out we headed to NOLA for the Stander Family Christmas Party.  It's a tradition the Stander's all get together and sing Christmas carols and eat way too much really, really good food.   It was a quick trip.  We got to see the DC Stander's and do Christmas with them before we all parted ways for another couple months - really need to see them more often. 

School didn't get out until Dec. 21st, so there really wasn't any time to do anything fun or go anywhere before Christmas this year.  Nick and I decided when the kids were little that no matter what, we spend Christmas morning at home.  It doesn't seem fair to them to strap them in a carseat for hours and hours while the toys they just opened (or have yet to be opened) are sitting back at their house.  So we go to mass on Christmas Eve, come home and get ready for the Fat Man to come.  I have to admit, the kids were a little nervous this year.  We might as well not even had an Elf on the Shelf.  Belly didn't do anything to stop their behavior or remind them the season was about things other than presents and toys and excess.  I think good ole Belly might retire for a year or two - he was pretty worthless this year.   Christmas morning happened in a flash - view the carnage below.  Before we knew it everything was opened, being pulled out of the boxes and disassembled by the time I turned the camera on.  At least they didn't wake us up at 5 AM like I used to do to my parents.

Caught this halfway in to them ripping into the first gift

And just like that - it's over.  

Caroline got an American Girl "just like me" doll.  Another one.  The girl has 4 - it's a little out of hand.  I should really think about insuring those things and all the related crap that comes with them.  

Sam got an air hockey table.  

They got other stuff too, but those were the big hits this year.

We spent New Years in Alabama and drove home on the 1st.  We got to visit.  Shop.  Eat.  The best part is that the kids sleep with the g-parents so Nick and I slept in until 9 almost every day.  It was nice.  

Sam started school on the 7th.  Caroline on the 8th.  It was nice to have some routine this week.  Not so nice to get up at the crack of dawn, but getting back to normal was good for us.

Now to get all these Christmas decorations down...  

This is my favorite part of the holidays.  My grandmother crocheted this a long time ago and it fits my round dining room table perfectly.   It's old so I only bring it out for Easter and Thanksgiving/Christmas and I will totally cut someone if they spill anything on it.        Luckily that hasn't happened yet.  :)

12 Days of Christmas - Stander Style

Put this together after going thru all of my facebook posts from the year.  Thought it was funny.  I'm telling ya - it's going to be a Christmas Classic.  Generations to come will sit around the fireplace on Christmas Eve and sing this song.   

On the first day of Christmas, my true love gave to me

A failed Swiss vacation

On the second day of Christmas, my true love gave to me

Two new cars

And a failed Swiss vacation

...in the interest of time....I'm sure you know how the song goes

On the twelfth day of Christmas, my true love gave to me

Twelve great memories

Eleven dog messes

Ten planned parties

Nine family trips

Eight diva tantrums

Seven teacher meetings

Six-thousand Legos

FFFIIIIIVVVVEEEEE new babies

Four trips to the ER

Three days at Disney

Two new cars

And a failed Swiss vacation

Felt kind of bad I didn't send out a letter this year, so I had to do something!

Top 5 Facebook posts of 2012

Every year for Chirstmas, I send out cards with a fairly lengthy letter.  At the end of our annual letters, I always put the top 5 Facebook posts of the year.  I choose a few different people every year to vote on them.  Since I'm really not feeling the Christmas spirit and didn't write an annual letter, I totally phoned it in and sent out cards with a link to this blog printed on them - I know - shameless, lazy, and a little self-promoting - but at least I sent out something.   So here it is folks, the top 5 Facebook posts of 2012:

....drum roll....

5.  Kids upstairs playing.

Sam:  let's play pirates!

Caroline: or we can play bridesmaids

Sam: (long pause) OR we can play PIRATE BRIDESMAIDS!

4.  Nick's office had Go Texan Day and he was putting on his boots

Caroline: Daddy, you look like a cowboy....except cowboys don't wear sweater vests.

3.  After asking Caroline to do her chores and get ready for school:  "I do EVERYTHING around here!  You don't do a thing!"

2.  Stopped at a stoplight and 2 birds hit my car and fall to the ground.  Sam sees them flopping around and says "Shoot 'em momma!!!!"

1.  Sam: MOM!  I got it!  I got it!!!

Me: What is it?

Sam:  my booger!  I've been trying to get that thing all day!

Honestly, I have the funniest kids.  I couldn't make up this stuff if I tried.  They are so much fun and while they do fight and whine, the laughs are by far well worth it.   

two steps forward, one step back

What we thought was a done deal with being worried about Sam ended up being slightly preemptive.  After Dr. Fernandez told us Sam was fine and we didn't need to worry about anything neurological, I thought we were done.  I would be lying if I told you we didn't pop a bottle of champagne and do some serious celebrating.  It NEVER occurred to me that the blood work our doctor ordered would come back fishy.  Although the doctors we saw in November said "we don't think this is neurological" the blood work says differently.  

So, here we are again at the oh-so-familiar intersection of OK Avenue and Craptastic Way - waiting for some news.  I HATE WAITING.  This time, we wait until January 11 to see a different doctor to get the results of the extra blood work that he ordered and some genetic screening.  While we wait, we are desperately trying to cling to some sanity and get through the days without having a meltdown. It's hard not to get online and google everything the doctor told us on the phone.  It's hard to watch Nick get to where I've been for months - that something is not right.   We're just praying that something was wrong with the tests they ran and not anything with Sam.

I've been talking about Sam and his issues for so long, that I no longer cry when I talk about it.   Is that normal?  I guess it's our normal now.  It's part of everyday life that I tell him to stop walking on his toes or "don't sit like that" or "good job walking up the stairs by yourself".  His physical limitations have become part of our routine.  I feel like whatever the outcome in January, that will become part of life for us.  

Thought I would give everyone an update.  Keep Sam in your thoughts and prayers.  I pray that come January 11, we will have good news and finally start 2013 with a step in the right direction.