12 Things of 2011

There are a ton of end-of-the-year link ups right now.  They all sound fun.  Favorite posts, favorite pictures, favorite recipes, favorite memories.  I was going to try to combine a few – but that just seemed like too much work.  Besides, I sort of did that last week on my blog’s anniversary. 

 

My Front Porch Swing and 4 Plus an Angel tried to make an end of the year review so easy it would be no stress.  So, of course – I stressed.  I could pick 12 words or 12 photos to wrap up this last year.

12…. Only 12?  I need a bigger number … like 25-50.  Because I have no idea how I’m going to get 12, but I’m going to do my best.  Just for the record.. I started with 20 and paired down to 12.  But – these are some of my favorite photos and I believe these 12 words summarize our last year.  Happy Holidays.

Innocence

Bonding

Joy

Unstoppable.

Adoration

  

Beauty                                                                                Whimsy

   

Experiences                                                          Worries                                                         Acceptance

Unity

Love

Love Grows Best in Little Houses

Once upon a time… I dreamed of living in a big house.

It would have this wrap around porch.  It would be colonial style and have 4 or 5 bedrooms.  I would have a walk in closet.  I would have my own bathroom.  Picture Barbie’s house… in real life.  I would have a garage.  I would have a fenced in back yard and be in the back of a culd-a-sac. 

 

Right now we have a fenced in back yard.  … that is about the extent of my dream house.

 

But… when I think about my grandparents.  My mom’s parents raised 5 children in a 2 bedroom house. **They had to add a small bedroom when my mom was born – and thus it became a 3 bedroom house**.  It only had 1 bathroom. The kitchen was small.  The living room was small.  … everything was small.

 

My dad’s parents raised 6 kids in a 3 bedroom, 1 bathroom house.  The boy’s room had 2 sets of bunk beds and the 2 girls had the other room.  8 people and one bathroom.  Love grows best.

 

I think we’ve decided to stay here for a little while.  Not forever… but a little while.  Maybe our love will grow best.  Yes – our master bedroom is 10.5 X 10.5 square feet.  Yes… the twins will need to share a room.  Or Andrew and Alexander will need to share a room.  Or…. I don’t know.  But – I think this is going to be the place we let our love grow.

Christmas Eve….

 

Addison, Andrew and Alexander made plates for cookies for Santa and carrots for Rudolph.  They needed to decorate them so Santa would know his plate and Rudolph would know his plate.

 

Best part?  They “forced” Alexander to help.  He helped with the stickers and crayons. *love*

It is all fun and games until Little Brother takes the plate.  Look at his sneaky face…. *love*

 

And then I remember my in-laws. Their master bedroom is a little bigger than ours. … But the rest of the house has a similar size. They only have one bathroom. They love.

Want to see? We all pile in… to where love grows best.

Siblings hug.  We all pile on the floor and play games together. 

Nana holds her granddaughters.  Andrew decides the Chair needs fixed…. so tool are scattered everywhere.

Siblings tease each other.  Her face really does say a million things.  As does his…

Presents are opened.  In one small living room.  Where love grows best.

Gifts are given.  Private Jokes are shared.  Nephews try to become detectives with their presents.

And underlying all of this – is the simple joy of being together. I think maybe we need to be smooshed in this small house together.  Where our love can grow the best. 

        

This picture was taken Christmas night.  You might not be able to tell – but they are holding hands.  You can’t walk through our living room.  There are stacks and stacks of things piled high on our bedroom dresser.  But – our kids are still hugging.  We hope you had a Merry Christmas.  We did.  It was wonderful.  Church on Sunday, celebrating the birth of Jesus, more time with family, and evenings spent with friends.  And every night… returning to our little house.

 

 

 

The Lost Gift

Have you ever bought a gift early?  Like over the summer early?  Like… you see it.  It is perfect.  You must buy this perfect Christmas gift that is perfect for your hard to shop for person….

 

I am photo sort of girl.  I love all things photo related.  I dream of Coach bags I can’t afford.  I decorate with snowmen in the winter and most of my collectibles don’t matter to anyone but me.

 

My step mother loves to read.  She reads books constantly.  (We do have this in common.) But her tastes are different than mine.  She collects skunks.  (fake ones)  She likes rod iron dragons and unique looking mystical things.  Her tastes are diverse, and in a pinch – I know a Willow Tree figurine or  a David Shore collectible will be appreciated, but earlier this year I found the perfect gift for her. 

 

While at a craft show – I found rod iron Dragon Book Ends.  Not the gift for me.  The perfect gift for her.  I mean perfect…. I knew she would love it.  I bought those suckers right away and this feeling of complete satisfaction warmed my heart as I could check her off my list.  early.  Awesomeness.

 

I lost those bookends.  Seriously lost them.  We were camping when I bought them, so I have looked through all our camping gear and the crevices in our van.  I ripped apart our gift hiding places.  I ripped apart the twin’s room, our room, and Alexander’s room.  Problem?  We have a lot of people in our house.  We tend to put things “out of sight” when we have therapy appointments, etc.  Problem?  We contemplated selling our house.  When the man came to look at our house, we did a mad clean up of the house.  Problem?  Lost Bookends.

 

After I ripped the entire upstairs apart, I moved on to the basement.  We’ve had a few bouts of heavy rain… with a little water.  So – some things have been “thrown around” to make sure they don’t get wet.  Then there are medical supplies.  Don’t forget about the clothing we can’t throw away because Alexander will grow into it someday.  *sigh*  So many boxes to go through.  I looked through these boxes… Did I shove these bookends in one of these places?  Anything is possible when you know someone is going to look everywhere in your house?  I looked in our playroom, office, and all storage areas.  I even cleaned out the space under the seats in our van… just in case.

 

At first it was funny. (this was 4 days ago).  Then I was worried (3 days ago).  It moved onto introspective (2 days ago) as I used the time to look at old toys.  Finally – today – I was frustrated. 

 

Me ~ “Where is that freaking Gift?!?” 

Ray ~ “Stop Cussing.” 

Me ~ “I’m not cussing.  Freak is not a cuss word. I would NOT cuss over a CHRISTMAS present.  That is totally wrong.” 

Ray~ “It is when you use it in place of another cuss word.” 

Me ~ “Shoot.” 

Ray~ “Stop cussing.” 

 

We all have our flaws, but for me… when I ventured into the realm of fake cuss words so close to the birth of our Savior – I knew it was time to give up.  I called my dad in tears.  I asked him what Wal-Mart gift my step mom would like …. something she would really like – because we are celebrating in an hour and this was 10pm last night.  He gave me a good idea, and I made my way to what I knew was going to be a hot holiday mess.

 

2 miles into my drive, I got a call from Ray.  I found it.  Buried under stuff at the bottom of Alexander’s closet. 

 

So… I know you are dying to see this mystery gift.  Here it is:

Not my perfect gift, but the perfect gift for her.  And I’m not going to lie.  I’m totally excited… because I know she will love it. 

 

Anyone else at the end of their rope over something silly this holiday season?  Anyone else lose gifts? 

The Perfect Chocolate Chip Cookie

Merry Christmas Readers.  I'm giving you all a gift  My recipe for Chocolate Chip Cookies.

If you know me in real life... you know - that my chocolate chip cookies are good.  Just the right amount of soft, chocolate, and ... dough.  Seriously... they are awesome.

photo is not edited...

Looking for the perfect last minute gift?  A baggie of these are all you need.

3/4 cup Crisco (butter flavored)
1 1/4 cup Brown sugar -lightly packed
2 Tbsp milk
1 Tbsp vanilla

mix

1 egg

mix

2 - 2 1/4 cups flour
1/2 tsp salt
1 1/4 tsp baking powder

mix

1+ cup semi sweet chocolate chips

mix

bake at 375 on non stick pan.  Probably about 7-10 minutes (I have a convection...) You need to take them out when they just turn brown. If you wait until they are brown.... then they will get hard.

Good luck. Merry Christmas.

Anyone out there have a testimony?  Ever eat my CC cookies? Anyone going to try them? Got a cookie recipe to share?

A One Year Anniversary

It has been almost a year.  2 days from now…. will be my blog’s one year anniversary. My little something for me.

It all started with a breakdown in an office room.  Like so many that have happened since.  One that nearly happened a few weeks ago.  I just needed something that could be all mine.

This blog has sort of taken a bit of a life of its own… but I’m still o.k. with that.

I remember when we first learned of Alexander’s diagnosis.  We wouldn’t tell anyone that he had WHS.  It wasn’t shame…. it was protection.  We didn’t want the “I’m sorry for you’s.”  We didn’t want people to Google all those horrible thing.  We didn’t want people to talk about us in whispered tones.  We actually wrote a letter to all of our family members and friends that told them not to call us or contact us – we just needed time.

Then I found the blogs.  Other mothers… writing.  Writing out their feelings.  Writing out their fears and everyday struggles. They also wrote about their triumphs.  It was private.  I could read… and no one would know.  I could learn and still be alone.  I still needed to be alone in this WHS world.  I read everyone’s story about when they found out.  I wanted to know how each and every person felt.  I looked at everyone’s pictures.  My baby looked perfect to me…. did theirs?  I looked at newborn photos, one month photos, …. I looked for milestones, for glimmers of hope.  I looked for understanding.  Because inside – I was still pretty devastated at how our life had changed on a dime.

December 23, 2010 was my first ever blog post.  My blog was originally going to be private because I was nervous.  I was worried about what my bosses would think of me writing on the internet.  I was worried that my students might find it. Parents of students might find it.  I was worried that my words might make me sound weak.  I worried it might make me look unprofessional.

 It didn’t take me long to realize that I was not ashamed of my feelings.  Everyone has them.  I wanted to help other parents the way people helped me… without even realizing it.

So, I’ve blogged. Through good times and bad.  Through seizures and milestones.  I’ve blogged about our family.  I’ve tried to remember that this WHS piece is only a piece of all the things that make us … US.

I’m really proud of what we’ve done here in the past year.

  
• I connected with a lot of WHS families.  Some of my favorite posts are ones of encouragement and understanding to other parents.
  
• I’ve learned to write about things totally unrelated to our crazy life.  And enjoy those moments.
  
• I’ve become very introspective on the things that impact our life.
  
• We’ve raised $14,000 to get Alexander a seizure dog.  And with seizures that last 5 or so hours, this blessing can’t come soon enough.
  
• We’ve had the opportunity to give some of our blessings away. (I don’t want to take away from those gifts by announcing them… they weren’t for recognition – merely for giving.)
  
• We’ve been the recipient of support.  So much support.  Prayers, prayers, and more prayers.
  
• We won an IPad – which has already made a difference in Alexander.  He is already gaining fine motor skills and becoming very vocal. (tonight, I was going to take him off the couch where he was watching TV with Andrew and Addison and he open mouth YELLED at me.  When I let him sit back down, he stopped yelling. YAY!!!!)
  
• I had the opportunity to travel to a book writing conference.
  
• We were picked up by BlogHer and have been given some exposure by their sponsorship.
  
• There is more.. I know there is more – but that’s all I have right now.

It is a pretty amazing list.  I’m pretty proud of that list.  It still is A Little Something for Me.  but… it is also a little something for a lot of people.  Our families to keep in touch.  Our friends to understand what we can’t always say.  The world to understand what life is really like.  Other parents of kids with WHS or any special need… of our realities.  I like this… Little Something.

So here are a few of my favorite posts of the last year.  Happy Blogaversary to me.
Letter for My Children
PSA
Prayer of a Special Needs Mother
A Year with a Newborn
Life Lesson # 3 – Rubbernecking is not Nice
Because of Easter
Letter to Alexander
15.32
Pure Joy
Letter to a New Mother
Effexor, Self Awareness, and Maturity saved my life.
The Unexpected Pregnancy
Who will Love me for Me?
I’m not going to play nice
Real World

A lot can change in a year. But, one thing remains…  I’m still beyond blessed to have all that God has given us. 



Thanks MamaKat and Shell for the inspiration

I believe what we have here is A Failure To Communicate.

We have 9 therapies a week.
A babysitter.  A nurse for Alexander.
An entire Pediatrician’s staff that bends over backwards to do whatever we need.
Every Specialist ever invented involved in Alexander’s care.
People who watch the twins on a moment’s notice.
And then – of course – family and friends.

All of whom – we would like to show appreciation for this holiday season.

I got this great idea.  Let’s give Chocolate to our “Alexander” team.  We could go to that really nice candy store downtown and get boxes of candy for everyone.  We could get this huge platter of assorted chocolates for the Pediatrician’s office.  We would show everyone how much we love them…. in the way only Chocolate does.

Then I priced this endeavor. And decided to re-think my plans.  The homemade chocolate was going to cost us a fortune at $7.00 a pound.  And we love them more than a pound’s worth!  So I devised a little plan.

I sent my husband out on a mission.  Get boxes of Chocolates from Wal-Mart.  Also – get small gift bags or little boxes so we could “make our own.”  Everyone would assume they came from the expensive candy store.  And … well… that could be our little secret.

Husband went to Wal-Mart.  Mission Completed. 



My “Little Gift Bags”




Seriously?!?!!?!? These were the size of full on Gift Bags!!!  He said, “Well… they had bigger sizes, so I figured this is what you wanted.”





My “Candy”



CRAP!!!!! What credible candy stores sell pre-wrapped Santas! And Hershey Kisses and Candy Canes? These don’t look like GOURMETTE CHOCOLATES!



**Upon reflection**
1. You shouldn’t try to “scam” people on their Holiday gifts.  Especially chocolate.
2.  Apparently my husband and I really need to communicate better.

Make Me Laugh Monday: Get Jesus out of the Barbie CAR!

I was asked to be a contributing writer at a Christian Woman’s Blog.  I said Yes.  It is www.mustlovegod.net.  I’m super excited and can’t wait to start writing all these posts in my heart. 

But – truth be told… I cussed three people out today.  If it helps – I didn’t do it to their face.

I’m really glad the website is called Must Love God.  I definitely do…. but I am such a sinner. 


While we are still on the topic of religion… I bought the kids a Veggie Tales Nativity Set the other day. And, I’m totally conflicted about it. You see…. here is the thing – We have a Nativity Scene. It is our “no touch” nativity. And… part of me says the kids should be able to interact with the Nativity. They should be able to touch baby Jesus and they should be able to “feel” that which is hard to touch. So I bought the Veggie Tales Nativity. Here is my little problem. What if they start playing Barbie with Baby Jesus? I have a real problem with baby Jesus hopping a ride in the Barbie Car.

Which makes me think about how I come off online.  I talk a lot about the praying that I do.  Praying for guidance… Praying for wisdom…. Praying for my children.  I don’t necessarily come out and blog about when I am irritated about things.  (Ok. Well sometimes I do.)  But – I don’t come out and air all our dirty laundry.  (Ok.  Well… believe it or not – what I do air is not ALL of it.)

I was getting dressed yesterday and wondering what I was going to put together for this post.  As I was doing this – I was racing around our house, after my 3 minute shower, trying to find a pair of underware (living room), trying to find a pair of clean pants (basement), and trying to find a clean shirt (hmmmm…. closet).  I totally gave up on the sock issue.


Did you know that 99% of the time I’m wearing socks with holes in them or socks that are on “day2”?  Seriously – sometimes I even break down and buy packs of socks – only to see them disappear and I’m back to my holey / dirty socks.  Today, at church, was no example.  Sock on left foot – dirty.  Sock on right foot – 3 holes.  They didn’t match.  Don’t believe me?  I have evidence….






I can tell you this.  I usually end up having two pictures taken of me.  Picture 1 – real me. 




Then I look at picture 1 and realize I didn’t “suck in my neck”




and thus – picture 2.


See… I’m a completely different person.  Just like online.





Happy Monday.  Got anything for us?  The only rule is your “photo” / “video” / and now “drawing” has to be your own.  Link up.


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I will FIX you

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome.  If you haven’t seen it… here it is.  If you have – skip below. It gets better. 

 

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile.  She reminds me constantly that God’s plan is divine for each and every one of us.  She doesn’t need to “fix” her daughter.

 

 

I’ve been struggling these past few weeks with sorting this out.  I posted a little bit about this HERE.  This fall has been pretty brutal for Alexander.  4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures.  It looks like we may be headed for surgery in the near future.  We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.)  We have “classic WHS kidneys.”  - We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s.  We are also going to see an ENT to “fix” Alexander’s ear infections.  Probably we will have tubes put in.  That seems the most logical choice. 

 

Again. I will move mountains for my child.  I do not want him to suffer.  If tubes are needed, then tubes it will be.  If other surgeries are necessary, then those will be also. 

 

Our appointment on Friday was with the Neurologist.  *sigh*  This is where the “how much can I ‘fix’ Alexander?” eats at me.  His illnesses have caused him to fluxuate in weight gain.  He’s been growing longer and not chunkier.  He seems to have a loss in muscle tone.  Ok. He’s lost muscle tone.  But he has this increase in appetite.  SO…. I’m thinking that his dose of Keppra is making him a little “off.”  We switched to name brand (which controls better) and upped his dose. 

Should I ask the doctor to lower the dose a little?  To avoid the zombie – like state I’ve seen him spiral into several times?  What if he has a seizure then?  How can I help him? without needing to “fix” everything about him?

 

Usually I’m ok.  I can balance these dualities pretty well.  This past week I was not that fine.  I kept replaying my friends video and wondering if I was pushing too hard.  Especially when it came to the neurology visit.  Keeping the seizures away is our number one priority.  All else must take a backseat.  What if he just doesn’t have great muscle tone?  What if that is the price we must pay to keep the seizures away? 

 

Our visit went well.  We had a great talk.  We made some plans.  Alexander is going to have some good Omega 3’s entered into his diet.  I’m going to try to put some weight on him and see if he can “grow” into his dose. 

 

Still… I must tread with caution.  To help my son, but not need to “fix” him.  Something I will continue to ponder.

Santa might be the devil

Just kidding.

Just wanted to get your attention.

We are still here.  You know its bad when your dad asks if you’ve given up blogging.

The holiday season is kicking us in the rear.

I feel like singing the 12 pains of Christmas.

But not really.  It is just 24 hours in a day is not enough time to do all that my heart wants to do. 

 

It has always been this way.  Do you know how many Christmas presents I’ve given and had to say- “Don’t touch the paint! It is still wet!”? Let’s just say… a lot.n (Please… family members = no need to make a list in the comments section).

 

Plus… are anyone else’s kids super bad right now? They are like maniacs!  I need to know – is it the season?  Is it a reaction to sugar and lights?  Is it because we are out of routine?  Or…. please say no… is it because they are 3?  I need them to go back to normal once Baby Jesus is born.  Please…..

 

So Ray and I are going to do some shopping today.  I believe this might not end well.  He can be …. impatient …. at times.  I need way more stuff than he knows about.  And he already did his Christmas season duty for the day – addressing cards.  We have enough for 3 friends.  (That’s a big oops on my part when ordering!) – so if you get an e-mail Christmas Card … then – well… Merry Christmas!

 

Things yet to be done this Season:

Anything from Santa in our stockings.

Anything for Ray

Parents

Nieces and Nephews are not finished

No Christmas cookies baked

Our Tree… well – you can look for yourself.  Had a bit of a meltdown. (See… no lights on the top half… oops!)

House is messy.

Haven’t finished homemade ornaments.

um…. And pretty much all other things…. Yup… We are a little behind here.

 

Things that have been done this season:

Lots of hugs given to my children

Watched Frosty and Rudolph while snuggling on the couch

My children know the story of Jesus’ birth and can tell you. (They do call it a barn… but – we are ok with that.)

Made 4 gingerbread houses with my kids… because they realized it was fun and we had opportunities.

Rearranged our schedules to visit with some friends and family members we rarely see.

Took a cousin Black Friday Shopping – because it was fun – not because we had to.

Prayed hard to make decisions about our family … lots of decisions to be made.

Decided to be a contributor at a woman’s Christian Blog – more on that later. (I’m guessing I’m the bad one?

Been a part of a few mini-miracles this season.  And Loved Every Minute Of It.

Made people our priority… not things.

Speaking of…. Not broken a blender in at least a month.

 

Merry Christmas.  How is everyone else’s season going?  Do my kids return to normal?