fancy trick

I'm posting this movie because when we found out Sage had Marcus-Gunn Jaw-Wink Syndrome, like a good paranoid mama, I hit the internet.  There were no videos of kids - just babies and college students.  I wanted to know what it would look like when she was a little kid.  So now we know...and if you're bored or interested or a crazypants mama like me, you can too...

The nerves between her left eye and jaw are crossed....whenever she flexes her jaw, her eye winks.  When she was a baby, she winked every single time she sucked on her bottle, now you really only notice it when she's looking down and taking big bites.

Its for life - and won't get worse or better.  She will likely need a minor cosmetic lift on her eyelid in the next 20 years.  Her vision isn't affected. 

She knows she has a "fancy eye trick" that makes people smile.  We think she's absolutely perfect...it seems normal that she has a party trick to match her run-at-life-no-holds-barred personality!  We have never met anyone who has Marcus-Gunn....I'm hoping we will eventually so she can see it on someone else.

So here ya go....sorry for the cupcake all over the place....but you know, when you're three, life is cupcakes!

Advance the video to 2:35 to see it best.

CLICK ON THE YOUTUBE LINK ON THE BOTTOM RIGHT ON THE VIDEO TO WATCH IT.

joy is now

So its been a bit....sorry to be absent.  Life has been full of life stuff the past bit.  Let's just sum it up by saying all will be well because we KNOW that joy is in the now.

A few tidbits of this thing we call home....

* Eva stayed home from school today because she was super dizzy.  I just assumed that this was a random word chosen to describe "I don't want to go to school today".  But because she had a deep, bad cough, she got to cash in the "Mom's not in the mood to force me to go to school today" card.  BUT....thank goodness for grandmas.....My mom suggested that she could in fact be dizzy because her inner-ear could be affected by this horrible cold.  D-U-H.  "Maybe she needs some cold medicine?" was the gentle suggestion.  I gave it to her, and the dizziness left.  When oh when will I start taking seriously what my kids say about how their bodies feel?  This tendancy to assume they are crying wolf has to be a curse I carry from teaching 10 year olds for years.  For them, "dizzy" meant "I didn't study for this spelling test and our nurse is really nice can I please go see her and find a way to say there until recess?"

Tonight, she said,

"Mom, I know it is truly a miracle that I am healed now.  I feel like a fresh glass of water without any specks."

* We caroled at the villa yesterday.  Oh how I love it when old people and new people look each other in the eye.  Just plain love it.

* The Buzz started wrestling tonight.  As in the actual sport, not just on our living room floor with his dad. He was so excited he couldn't eat supper.  He even let me put shorts on him with sweats over them, because "that's what the wrestlers do."  Riv in a singlet could quite possibly be the cutest, most disturbing thing I will ever see.

* My kids learned today that there is a special four-letter-word reserved for when I find stick-figures drawn in PEN! all over the nice couch.  That's all we'll say about that.

* Did you know there is a 1-800 # for getting out stains?  Here's what you do.....Call 1-888-295-6457. Then dial ext. 1.  They will look it up on the internet and help you.  I'm not kidding.  Why not look it up yourself, you ask?  Well, mostly - and quite importantly - hearing the soothing voice of a calm and reasonable stranger just after you have found pen on your couch is exactly what the doctor ordered.

So......pen on a suede couch?  Rubbing alcohol.  It worked like MAGIC.  I might draw another stick figure just so I can do it again.

* Here's what's going on as we speak.  See?  JOY IS NOW!!

Super Tuesday

Which really was JUST SO SUPER!!!!  That's all I'm going to say about how elated I am with the results.  I pinky swear.

We started by going to the polls at 7:30 am.  Eva insisted on dressing up for the day, jewelry and all.  I was absolutely beside myself giddy to take her along with me to vote for the first time.  She took it all super-serious, and wanted most of the ballot read aloud.  The night before there were discussions about how only white rich men could vote years ago.  And how fortunate we are.  And what a responsibility we have.  I miiiiiight get this excited when she gets her period, but I'm not making any promises.  Other than that, it probably can't be topped.

 That night we had an Election Party....

I found it within myself to buy this...

30-plus people thrown together - to eat, drink, be merry, and watch the returns.  Most didn't know one another, but we all came together - like the nation, right?! - to watch and participate in our awesome democracy.

When the grownups are distracted by tv and good conversation, this little lady wisely takes advantage of the opportunity to get her mits on whatever is available and get it in her mouth...

I left the red eyes in because this picture is something to celebrate.  Because of her Marcus-Gunn, we watch her eyes in photos - to check if the red is equal in size and in the same spot in her eye - if it weren't, we would be talking vision issues.  Praise God, it is!! 

someone's tshirt...

Even the littles had their "voices" heard...

11:30 pm....results are in...and we are all partied out...

dinner and DELISH dessert

Mom and Dad came over for an impromptu dinner.  

Memories of weeknight dinners of my childhood...

the four of us sitting around the table

bowing our heads respectfully when we pray

calmly discussing the day

four on the floor (chair legs)

chewing with our mouths closed

asking to be excused

clearing our plates when everyone is done

patiently waiting for dessert

Let's just say that it is now the same room, three of the same people, and...

well, that's pretty much it.

But we do have a good time!

new trick!

the 7 year old schools the ph.D

books

her Marcus-Gunn Jaw-Wink Syndrome is fascinating  

this is what happens every single time she sticks out her tongue

i-pad lessons.

yes, that's Dad on his shirt.  

dutch blitz.

Eva beat Grandpa in round one (even though he warned that he is faster than he appears)

quite a proud moment.

 tried a new recipe tonight. 

caramel corn chocolate pecan bark

and I plan to make it every day for the rest of my life.

I will weigh 300 lbs, and I will be happy.

Its from Cooking for Isaiah, with some modifications.

1 c. sugar

2 Tbsp. lite corn syrup

2 Tbsp. water

1 tsp. vanilla

6 c. popcorn, popped

1 c. pecan pieces, toasted on the stove with 1 Tbsp. butter and a hearty dash of salt

12 oz. package of semi-sweet chocolate chips, melted

kosher salt (you MUST use salt.  It MAKES this.)

Line a baking sheet with parchment paper.  In a small saucepan, combine the sugar, corn syrup, water, and vanilla.  While stirring, bring it to a boil over medium heat.  Turn the heat down a bit and then let it cook for 15 more minutes, without stirring.  

Pour it over the popcorn and get it all combined.  This is the part where I melted the spoon and got a blister on my finger.  Be careful!

Spread it onto the paper, sprinkle over pecans, spread the melted chocolate over the top, and then sprinkle on some kosher salt.

Let it harden and then break it apart.  And eat it!  Share if you're in the mood to be nice.

Blessed be!

Cookies and Valentine and Marcus-Gunn and oh happy me...

Oh, how I heart heart day.  

I've made these sugar cookies at least ten times, and they turn out differently every single time.  I don't know if its the temp of the butter or the quality of the shortening or just the mood in the kitchen.  But they really are no-fail.

3/4 c. shortening (I use butter-flavored crisco, usually)

1 c. butter (I sometimes use cheap margarine.  Like I said, no-fail.)

1/4 c. cream cheese (no low-fat for this one)

1 c. sugar

1 c. powdered sugar

2 eggs

2 tsp. vanilla

1 tsp. salt

1 tsp. pepper (Just kidding.  Just checking to see if you're listening.)

1 tsp. baking soda

1 tsp. cream of tarter

4 1/2 c. flour

Cream together the shortening, butter, sugars, eggs, and vanilla.  Mix in the salt, soda, and cream of tarter.  Mix in the flour.  

Roll, chill, and slice.

Or chill, roll, press.

Or chill, roll out, cut out.

Or chill, then scoop.

Once again, no fail.  The ones in the picture were chilled then scooped.

Bake at 350 degrees for 10 minutes.  Let them cool a bit on the sheet before removing them to wax paper. 

And just because this is all about sharing the love, 

here's the Butter-Creme Icing recipe:

2 c. powdered sugar

1/4 c. butter (use the real stuff this time), softened

pinch of salt

2 Tbsp. milk

1 tsp. vanilla (be generous with it)

To make it chocolate butter-creme, add 1 1/2 squares of unsweetened chocolate, melted

Mix the sugar and butter and salt until light and fluffy.  Add the milk and vanilla and mix until smooth.  If it is thicker than you like, add more milk.  

And more Vday....What do you do when your husband is working a double shift and its still 2 hours til bedtime?  You get out the butcher paper and make a giant valentine.  We decided this was our Valentine card to our own selves.  Had a great time together, especially because it was divided in half down the middle into "your space and mine".  That's how love works sometimes, isn't it?

Sage is doing much better.  Still not herself, but no fever, and we don't hear a rattling when she breathes. I've noticed her eyes are funkier when she isn't feeling well.  She has Marcus-Gunn Jaw-Wink Syndrome.  Click here to see more about that.    Or here's a youtube video with an example and info.  We're feeling like its time to get to a pediatric optometrist and learn some more facts, plan any needed treatment, etc.

But look at that sweet sweet face.  

Oh my happy heart!

So that's what it is

It helps to have friends that are doctors!  Our optometrist friends, Zach and Jessica, diagnosed what's going on with Sage Eliza's left eye.  Since birth, it does a tiny wink every single time she sucks her bottle, and it sometimes opens really wide when she's mouthing a toy.  She has Marcus Gunn Jaw Wink Syndrome.  The "I barely passed college science classes" definition of that for her mama is that two nerves - one for her eye and one for her jaw - are linked or crossed.  So when her mouth opens, so does her eye.

Sometimes you can barely see it and other times it seems pretty obvious.  If you look it up on youtube, you'll see that Sage's case is very mild.  There are some wild videos that people who have it quite severely have put out there.  The good news is that it doesn't affect her vision.

She will be like this forever.  It doesn't get better and it doesn't get worse.

Here's our reactions so far:

Ryan says she's lucky because she'll have a cool party trick.  I say thank you God that's all it is.  Mom says "Well, if it bothers her later on, you can tell her ways to make it less noticeable." (always the nurturing teacher!)  Eva says its good God gave her this since he forgot to give her a birthmark.  Wonder what Sage will say about it someday?

Don't be afraid to ask us about it or watch her eye when you see us.  It really is unique and maybe you'll find it as fascinating as we do!