Yo soy La Lay

adventures in family, faith, and Down syndrome

Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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Three

The holidays always lend themselves well to being nostalgic. It’s almost required, isn’t it?  And when we throw Sweet Girl’s birthday into the mix, sheesh, pull out the Kleenex!

I keep sitting down to share her milestones this year, to tell you how far she has come, and to celebrate the joy of having her big personality in our house.  The problem is, all I keep focusing on in my own mind is that there is no picture of Tessa and I together on the day she way born.


Funny what the mind holds on to.

There is no sadness in her existence.  There is no wistful dreaming of taking away her struggles.  There is only a smiley, fun, curious little three-year-old with an independent streak a mile wide.


She loves to wander from room to room, searching for items that are supposed to be out of reach to pull down and steal for her toy room.  Current favorites are my pot lids and mixing bowls, along with any of Ellie’s coloring utensils.


She wants to do all of the things that her cousins do, and insists on being included in the fun.  She is always singing.  She is always talking.  She has excellent manners, though the phrase “no, thank you” is more of a curse than a blessing these days!


She loves pretzels and broccoli and frosted animal crackers.  She grabs books from the shelf and tells you to sit so you can read them to her.  She gravitates toward people who are hurting and gives great big, melty hugs, drumming her tiny little fingers on your back to make sure you know that all is well.

In three weeks, she’ll take that little preschool classroom by storm.  Tessa’s huddle will get bigger and bigger.  And as freaked out as I am to send her into the giant world, I can’t wait to go on this adventure in the passenger seat.


Happiest of birthdays, Tessa Lynn!  How thankful we are that God sent you to us. ❤️

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State of Our Union, February 2016.

It’s time for a good, old-fashioned State of Our Union update.

My lack of writing hasn’t been for lack of topic, or even lack of energy.  Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page.  What I haven’t found is an environment in which I can feel settled in and focused on the words.  This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.

It’s weird.

We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer.  Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness.  For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time.  We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year.  Next year’s schedule, next year’s group of students, next year’s curriculum.

See?  No settled, no focus.  I’m like one of those frustrating novels that keeps flipping back and forth between time frames.

Those make me nuts.

Ellie’s big “news” is that she is officially a reader.  This is something that she is super excited about.  She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled.  Last night, I came home with some kind of cold virus.  She plopped me on the couch, covered me with a blanket, and sat down with Are You My Mother? .  She read me the whole thing, cover to cover.  It took her an exceptionally long time, but she stuck to it.  So cool!!

We’re getting ready to enroll her in Kindergarten next year.  Like most parents, I’m not sure how we got to this point already.  The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to.  She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split.  We toured the school recently and I feel pretty confident that it is the right fit for her.  We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.

Please let that sink in for a few moments.  Tessa.  Learning SPANISH.

There is no “no.”  There is only “how can we make this work?”

Speaking of Little Miss… we have an annual review coming up on Monday.  She is on a roll these days!  No, no walking yet.  No, I’m still not stressed about it.  When she gets too heavy to carry, we’ll have another conversation.  Right now, her words and her play skills are totally blossoming.  We are still using sign quite a bit, but she is picking up on words and phrases left and right.  The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face.  It kills me.  SO cute.

Her interactive play has also grown extensively.  Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there.  She’s gotten quite good at distraction.  When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble!  In public places, she is a total ham with other adults.  This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.

Suffice to say, we’re rolling along now.  Good things are on the horizon, but good things are happening now, too.  It may feel unsettled, yes, but good.

I haven’t had the opportunity to sync my latest pictures recently.  We’re over on Instagram now, participating in the #365ofDisability.  If you want to join us, we are @yosoylalay .  Lots of cuteness going on over there.  🙂

Happy almost-Valentine’s Day!

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The Church Fiasco 

I will admit that I work too hard to keep it all together when I’m in public with the family.  Some days are just hard.  Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.

I can’t help it, so y’all are going to have to forgive me.

Now, enter Down syndrome.

Let me be very clear – my little sweetheart does not act out because she has Ds.  She acts out because she is two.  And it’s normal.  Some days are pretty rough.

Aren’t they for all of us?

But this is the perception that I find myself fighting, which has now intensified my need to keep it all together.  I know it’s not really about Down syndrome.  I just really want everyone else to believe me.

Church Sunday started off well enough.  Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores).  Then, it got a little hairy.

We sit in the pew directly in front of our Praise Team.  John was playing, so it was just me in the pew with the girls.  Ellie was, for once, an angel.  But Tessa decided that it was time to be free.

During the sermon, it started with crawling back and forth.  I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on.  When it is “on”, it vibrates.  She loves it.  It’s very soothing.

  
She threw it.

She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.

I about died.

The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them.  Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way.  Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15)  and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.

And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”

Because it’s not about the Down syndrome.  It’s just my kid, being naughty, as kids do.  I just want people to see that.

 

In case you wondered, we got the Z Vibe back after church ended.  The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to.  Thank God for that.

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These boots are made for… crawling.

In case you were wondering, no, Tessa is still not walking.  I don’t expect her to in the near future.  In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.

No, really.

She can stand.  I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult.  When she wants.

If she wants.

I’m not fretting about this at all, actually.  Quite the contrary.  Cool as a cucumber over here.  No, this is not sarcasm.  I know, I know, this is not what one might typically expect, given my attitude in previous posts.  One year ago, I was impatient.  I will still working on being “ok” with our own pace.

(In this moment, the fact that I was working on it is almost laughable.  I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)

In any case, we have put all the supports in place that she might benefit from.  Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.

But I digress.

She will walk, I am sure.  She just needs to find the right motivation.

As a side note, we met with our new pediatrician for the first time yesterday.  The appointment was great… Except when she asked about Tessa walking.  I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.”  No shit.

The good thing is that Little Miss is indeed quite little, still under 22 pounds.  And, she is also quite cute.  Just look at how she charms her way out of walking with her Mimi today:

  

Girlfriend will get there when she gets there.  For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.

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A Typical Two-Year-Old 

A few weeks ago, I had the rare opportunity to sit in on one of Tessa’s therapy sessions.  Since we moved, her new therapists come while I am at work and I rely on my mom and the therapy notes to learn about what she is working on.  So, when situations arise where I can be a part of the sessions, it is a treat. 

I was sharing with her DT and OT some of the newer behaviors that she has that are making me bonkers.  All kids do goofy stuff, but sometimes the approach to existing with those behaviors is different when a child has some kind of cognitive delay.  In any case, after my little laundry list of items, her DT laughed and said, “well, she is certainly displaying some typical two-year-old behavior now!”  

This was music to my ears!  For as content as I am with whatever level of development either of my kiddos reaches, it’s fun to see them enter a new stage.  And while typical two-year-old behavior is often “boundary exploring” at best (let’s be honest.  “Naughty” is a better word.), it is impossible not to feel equally overjoyed and overwhelmed that she can now stand up at the refrigerator and pull down every single picture, magnet, calendar, and momento that was unreachable, or uninteresting, two days ago.

Bring on the Terrible Twos…

  

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31 for 21 Day 4: A little off the topic of advocacy

We interrupt this regularly scheduled program to share an exciting morning.  Our thoughts on advocacy will continue tomorrow, but I thought it was important to share that Tessa and I had our first conversation this morning.

At an unreasonable hour (5:56 am), Tessa was being quite loud in her crib, so we took her out and made her crawl around in bed with Mom and Dad.  After about half an hour, she got a little restless.

(All words were signed and spoken by me.  Tessa spoke “down” but just signed the rest.)

Tessa:  Da… Da… Da!  (down)

Me: Oh, you want to get down from the bed?

Tessa: Da. (points forcefully at the door)

Me:  Downstairs??  No, wait.

Tessa: Da. Eat. Milk.

Me: No, wait. No milk, no eat.  Wait.

Tessa: Cookie.

Me: Wait.  No cookie.  Wait.

(pause)

Tessa: Cookie please.

BOOM.  Tessa for the win.

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18 months

Ok, that’s enough cranky already.  Yes, The Big Move is daunting.  Yes, spring time has brought mass chaos.  Yes, my patience has been tried beyond its usual limits.  But let’s be realistic.  We’ve made so much progress that really, amidst all the chaos, there is still so much joy.

I don’t even remember the last time I shared a family update.  As this outlet is generally meant to be that – a place for updates – I’ve certainly dropped the ball.  So here you have it:

John and I are making our way, slowly but surely, to the end of another school year.  We both took on leadership roles in our buildings this year and while challenging and new and definitely an adjustment for me, the year has been revitalizing.  And we had a really great time together at a family wedding recently!

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However, we are rather boring.

The children though… oh, the children.  They are, as I tell anyone who asks, wild and crazy.

Seemingly overnight, Ellie went from scribbling haphazardly all over coloring books to this:

Mike Wazowski from Monster’s Inc, drawn from memory

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Our family (there was “no room” for Daddy)

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A tree (clearly, I hope)IMG_8104I hear that those are pretty good for a three-and-a-half year old (though she is now getting much closer to FOUR than I care to admit).  We have some artists in our family (especially my mother in law) so I’m sure that she could have some artistic talent.  I’m not sending these off to the Louvre quite yet, but hey, if the kid can draw, that’d be pretty cool.

Ellie was also in the wedding that I mentioned above.  She was the sweetest cutest little flower girl.  Did she fall asleep in the salon chair?  Yes, she did. Did she cry going down the aisle?  Yes, she did.  But did she look lovely during the whole shebang?  Yes, quite lovely.

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Tessa, while still very much a baby in a lot of ways, has catapulted herself toward toddlerhood.

We recently had some tests done on her eyesight and hearing, both of which have come back without concern.  While her SLP (speech therapist) was concerned that she might not be hearing everything that she should, we know that she has an ear tube that is working its way out of her ear (as they usually do after 12-18 months) and it is partially blocking some of her hearing in one ear.

Tessa loves (LOVES.) to babble.  Usually, her intonation makes it sound like she is speaking in long sentences of gibberish.  There is a lot of emotion in her statements.  We get a good laugh out of the angry Tessa, as we are quite sure that if she had words, they would be quite unkind when she’s upset.  We have been working more on signing with her.  Ellie loves signing and always asks how to say various words in sign.  Tessa has just a couple signs – more, eat, daddy, and play (what more do you really need??).  We are working on bedtime, please, thank you, drink, potty, Mommy, Ellie (we use the sign for E, but shake it like play), shoes, and of course, NO!!!

Very often, I have moments where I think “wow, she is absolutely nothing like an 18-month-old.”  And then sometimes, she does things like this…..

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…. and I’m reminded how she’s not entirely different from her typical peers.  That cabinet had been closed, by the way.

Tessa crawls like a champ.  MAN is she fast!!  One of her favorite things to do is to hold a block or other object in her hand and race across our new laminate floors.  She LOVES the loud bang bang bang of her little hands as she moves.  We are working on getting her to bear weight on her feet.  She fights it most of the time, but today, when John was giving Ellie her bath, Tessa was so desperate to see what was happening in the tub that she pulled herself right up to her feet.  SO exciting!!!  We have her wearing a SPIO suit on a fairly regular basis (supposed to be every day… realistically, it’s like 2-3 days a week) to give her more body awareness and support.

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What I love the most about her right now is the budding personality.  So far, Tessa is a little shy, but sweet as pie.  She just loves to smile and laugh.  While she is usually contended to roam around the house exploring, nothing makes her happier than to have the full attention of one of us or, most especially, her sister.

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Did I mention that she gives kisses now?  Or that she got her first haircut?  Or that she can eat real table food?  And she kind of drinks from a straw??  Have I shared that we finally moved up to 12 month clothes?  Or that turning the pages on books makes her squeal with delight?

We’ve been busy.

In two weeks, school will be out for the summer… ok, three if you count my extended days.  I can promise more updating as we take our deep summer breath.  Get excited.  Summer is going to be here before we know it!

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Inside and out

Look, I’m not a fan of the cold.  I’m sure someone could make the case that I’m really missing out by not playing with my kids in the snow, but really, I’m just fine with taking the pictures and making hot chocolate (recipe at the end).

Plus, on the inside, we have just as much fun.

At 6:15, Ellie woke up, looked outside and gasped.  “It’s Christmas!” she exclaimed.

Well no, not quite.  It was still dark outside and she was desperate to head out.  I managed to keep her calm until precisely 7:22 am.  Then I gave up.  When I told John I was sending her out, he look at me with giant puppy-dog eyes… “Can I go out, too??”

I bought this snowsuit a little too big last year and made it work.  This year, it’s a little too small, but still works.  Two years out of one snow suit?  That’s a parenting WIN in this house!

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 Dora umbrella is back!IMG_7571

IMG_7569The first trek out was considerably calmer than the afternoon madness.

A kid in ski goggles… too much.IMG_7583

Blizzard Conditions… no kidding.
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She doesn’t have the attention span to build a fort, so this will do.IMG_7589

And on the inside, I got to enjoy… this:

IMG_7576I win. 🙂

Our favorite hot chocolate recipe

1 cup milk

1 tablespoon sugar

1.5 tablespoons Hershey’s unsweetened cocoa powder

1 handful of semi-sweet chocolate chips

Throw everything into a pot, heat it until the chocolate is melted, serve in a mug with marshmallows.  All these ingredient amounts are total approximations, so good luck. 😉

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A Year of Ellie-isms

I had to laugh when I looked through my 2014 Year in Review on Facebook.  If you aren’t on Facebook, the site put together a “review” that gathered up your most popular pictures from the year in chronological order and then gave users the opportunity to post this onto the site for everyone to relive their awesome year.  Mine was very sweet… and very full of pictures of Tessa.  As a matter of fact, every single picture was of Tessa.  And this is all well and good (she’s very photogenic), but as I have two children, I felt a little “oops” when I saw the review.

Out of sheer guilt, I went hunting for posts about Ellie.  I’m feeling much better now.

I hope you enjoy our year of posts inspired by our wild and crazy oldest daughter…

January 9, 2014

Weird Toddler Behavior #673: Stashing toys in the pull-up. Apparently she just couldn’t be bothered with carrying her Elmo phone, so into the pants it went. Unfortunately for her, you can’t hide much in skinny jeans…

January 28, 2014
I leave her alone with Tessa for 30 seconds… She tells me that they’re “practicing for Auntie Kelly’s birthday.”

 

February 7, 2014
The joy and terror of popping popcorn…

February 10, 2014

We have such thrilling dinner conversation… Tonight, my favorite lines were “please stop licking the table” and “Ellie, we don’t eat chalk. Spit that out.

February 22, 2014
This morning, we decided to surprise Ellie by jumping into her bed and waking her up. Not only was she already awake when we got there, but she literally smiled up at us and said, “Oh my gracious. You are bothering me. Can you get out of my bed, please?”

February 25, 2014
Me: Hey Ellie, what did you do at Miss Julie’s house today?
Ellie, in the most joyful of voices: I farted!!!!!!!
Me: Oh. What else did you do?
Ellie: That’s all, Momma.

March 26, 2014
…and then there’s that panic-filled moment when your child comes running into the room exclaiming “I really need to screw something!!!” And you turn around and sigh with great relief because she is toting around one of Daddy’s screwdrivers.

April 27, 2014
John: Ellie, walk down the stairs, please.
Ellie: Ahh! I can’t! I can’t live like this anymore!
John: Well, I need your help cutting strawberries.
Ellie: I just can’t work in these conditions!!!!!

May 11, 2014
I am wondering how long this “imaginary friend” phase is going to last. Because I have to tell you, I look like a total nutcase pushing “Millie” in the swings at the park.

May 16, 2014
Ellie: I’m a little girl, so I can drink milk!
Me: Adults can’t have milk? What about me and Daddy??
Ellie: So Daddy has water and beer.
Me: Oh yeah? Well what about me?
Ellie: Just wine!

May 28, 2014
Today when another girl in the doctor’s waiting room refused to share the crayons, Ellie looked her square in the eyes and told her “Fine. Go drink your water. I don’t want to play with you anyways.”

June 12, 2014
Seen: One three-year-old, shaking her naked butt in her little sister’s face yelling, “Do you know what this is??? It’s my butt!!”

June 27, 2014
Happy THIRD birthday to our goofy little comedian, Miss Ellie Bean!!! In true Ellie fashion, when we woke her up singing Happy Birthday this morning, she shoved her little hand in our faces and told us “Not yet. Go away.” Wouldn’t expect any different!!

July 2, 2014
Overheard: “Tessa, are you going to jail with me? We can read books and ROOOOOB the bank!”

July 28, 2014
Three-year-old for sale. Mostly potty trained. Needs work on table manners. Comes complete with a variety of memorabilia from the movie Frozen, an endless supply of jokes with no punchlines, and more sass than a 15-year-old girl. Seller is willing to be paid in chocolate and bottles of tequila

August 24, 2014
Just changed Ellie’s bedding. When I removed her comforter, I found 17 books (12 hard cover), 2 cups, 5 monkeys + 1 Curious George, 3 stuffed dogs, her nightlight, a stethoscope, and a framed picture of John and I. ??????

August 26, 2014
It takes real talent to put a pair of underwear on inside-out, backwards, upside-down, and only using one leg hole. But, at least she’s wearing underwear…

September 12, 2014
5:15 am: Sobbing on the monitor… “I just need ice cream! With all my toppings!! And my favorite circle balls!! I’m scared there’s no ice cream ever again!!”

She’s just like her mother.

October 22, 2014
Half time at John’s football game. Ellie approaches as he is conversing with parents and players.
“Daddy, did you pick out this shirt??”
“Yup, and your pants, too.”
“And did you pick these undies??”
…and proceeds to pull her pants down in front of the entire crowd.
We’re never going back again.

October 26, 2014
So I’m cleaning the bathroom and Ellie comes running in yelling “Oh wow! Thank you so much!” In her arms are all of the Christmas presents that I had already purchased for her.

What am I supposed to do with this child?

November 1, 2014
This morning, she tells us, “I need to eat! I’m not having pancakes. I’m not having oatmeal. From now on, I’m JUST having candy. You all just need to relax.”

 

November 10, 2014
Ellie, teaching Tessa how to eat: “Look, you just swallow, then chew. And if you don’t like it, you just spit it in Mommy’s hand.”

November 23, 2014
Ellie: Mom! Come see! Tessa is awake!
Me: I’ll be right there, just have to finish writing.
Ellie: Mom! Life is all about making children happy. Don’t you know that??

December 4, 2014
Home with a sickie today watching One Direction on Sesame Street.
Me: El, are those boys so cute?
Her: Oh, Mom. Babies are cute. Those boys are so haaaandsome. Play that one again.
And so it begins…

December 30, 2014
In the midst of our heated discussion about whether to fix the old car or buy a new one, Ellie came running into the kitchen yelling, “Guys! Stop arguing! We are livin’ the dream!!”

There were plenty of pictures of our crazy kid, too, many of which I have shared here and a few old ones that really made me smile.  I try really hard to be balances, so today, I feel good about the year we had and where we are going.  One thing is for sure – Ellie is not going to allow us to “forget” to love on her.  What joy (and agonizing frustration 🙂 ) she brought to us in 2014!

Happy New Year!
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