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.

Fall Photo Shoot

WARNING!!!!!  Picture overload!  My friend Kristy Owens takes A-Mazing photos.  Look what she did with my family???  She's very talented and I can't wait to use her again.   

In some of these it almost makes you think my kids love each other....

Anyhoo - this is from our photo shoot in October.   

 Look how sweet... 

what she didn't capture on film was that of her brother trying to tackle her in the grass. 

Oh - and me screaming "Don't get dirty!!!!"

My daughter - the photo bomber.  Let's try this again 

Much better 

 In this pic - I was trying to get him to open his eyes more.  

This is what he did instead

Again - SO sweet....

 My sweet Caroline.  Such a diva!  

lots to be thankful for

My heart is so full right now {not unlike my belly from all of this food I've been eating}.  Wednesday we had our appointment at the Blue Bird Circle Clinic for Pediatric Neurology so we could finally get an answer - or at least some insight - into Sam's physical struggles.  Originally, this appointment was for July, 2013 - yes, you read that right.  Fortunately, I had enough sense to call back and see if we could get on the cancellation waiting list for a quicker turn around.  He saw 2 doctors, they evaluated Sam extensively, drew blood and then in walked the big neuro doctor.  I was starting to hyperventilate, until he said those magic words: "Sam's physical limitations are not neurological. AT ALL"  After that we stopped listening and I started crying.  We had to have the doctor repeat everything else - thank God Nick was there to ask again b/c I was a hot mess.  It was such a relief to hear him say that.  They diagnosed Muscular Myopathy - which is just a fancy way of saying muscle weakness.  Course of action is PT/OT {which we've been doing for over 6 months}.  A big part of me knew that it was probably nothing - but in the back of my mind there was a small part that thought perhaps this was Muscular Dystrophy or ALS or PLS or a tumor {just a bit of advice: stay off WebMD if you're concerned about anything health related}.  While we were there and because it's basically protocol, they drew some blood to test his enzymes and do some genetic testing to see if this is something he could possibly pass on to his future children and grandchildren.  And if it is, there's a likelihood that Caroline could possibly be a carrier as well.  Even if it is, this is very minor and very treatable without medication or surgery.

While in the clinic all morning on Wednesday, we encountered many children with huge fights ahead of them.  Children and babies who were SO sick and traveled from all over the world to be at TCH.  Nick and I both agreed that no matter what Sam's outcome was on Wednesday, it was in no way as severe as what the other families there were experiencing.  Puts things in perspective...

Thanksgiving has a truly different meaning after Wednesday.