Tuesday, December 31, 2013

Done.

Sunday marked our last Christmas celebration.

And after the hectic-ness of the last 14 days, including how many Christmases?, how many miles traveled?, we returned home yesterday afternoon, about 2:30 p.m., just wiped.

But we came home to a disaster of a house!

I pride myself rather strongly on the orderly-ness of my home. It's constant. Never perfectly clean, mind you, but it is always organized. Picked up. Uncluttered.

Christmas is the one time when we go overboard with knick-knacks, decorations. Add in the mess from Christmases, traveling and everything else (the kids and Ray have been home every day since Dec. 20), and my home was a whirlwind of clutter.

(Insert a small panic here.)

So, at 3:30 p.m., I started cleaning.

With the help of my husband and daughters (the girls, well, not really, but they did sort of, half-heartedly try for 5 or 10 minutes), we tackled the house room by room by room.

We made progress. One square foot at a time.

Ray, for some reason I never determined but also never questioned, continued to be motivated, willing to help not only clean but to de-Christmas-tize the house! At 8 p.m.! After nearly five hours of "regular" cleaning! Happy New Year to me!

I let him go after that, figuring I'd pushed my luck enough.

But I kept at it, starting to tackle closets and clothing...

And, at 11:30 p.m., long after the kids were asleep, I finished the very last pile in my bedroom.

I got the house back to normal.

Organized. Neat. Sparsely decorated.

Insert here a happy sighs. Lots of happy, accomplished sighs.

Why the rush?

A million reasons, really, topped with me wanting to start 2014 off on the right foot; me wanting to scrapbook tonight but knowing I wouldn't be able to do so if the house is a disaster; and just needing to get started so, come Thursday, when we all return to our normal routines, we're ready.

We're ready.

I'm looking forward to 2014.

I do so with mixed feelings -- 2013 was an awesome year, my favorite year to date by far -- but we're all headed down the right path, all together. Optimistic, happy, healthy.

Team Wesley.

We're ready.
- Bethany :)

Thursday, December 26, 2013

Merry Christmas!

From us to you.



We're having a super fun Christmas holiday.

Our Christmases this year are spanning about 14 days, so we, really, are just now at the midpoint.

But, so far, we've been loving every minute of it, spending time with each other, with our families.


Merry Christmas.

Love,
- Bethany :)

Monday, December 23, 2013

from us...



As were driving home yesterday, leaving the Cities after our first Christmas gathering, we passed the exit that would have led to our first apartment, the one Ray and I lived in right after we wed in 2005.

Not to allude to any super-serious doubts or anything, but it's fair to say that back then, while I was completely excited and sure of our then-pending marriage, I did wonder where our lives would lead.

I used to occasionally wish for just a glimpse into what our life would be like five, ten years later. To know that any of the hurdles we were trying to clear back then would be long behind us.

Yesterday afternoon, as we drove past that exit with barely a glance, we were blaring "Let It Go" (from Disney's Frozen) on the radio. Lola was singing along, offering some correct lyrics, some that were close, and others that were, well, not; Millie was hand-dancing, waving her hands in the air and wiggling her fingers, as if dancing, and watching us, smiling, happy to be a part of it all; Ray and I were holding hands, softly singing the words we knew; and Mustang was sleeping on my lap.

I couldn't help but think of those old wishes, wondering if I'd had a glimpse then of what became yesterday, what I'd have thought.

I'd have run down that aisle.

Merry Christmas.
- Bethany :)

Friday, December 20, 2013

Christmas Magic revisted

It was just over a year ago that I wrote this post.

So it happens.

She can talk.

But she doesn't.

Is she nonverbal? Limited verbal? We never get a real hard-line definition. We tend to say nonverbal because even,on the occasional instances when she does talk, "Hi Daddy" is more like "Eye a-eee" - kind of like the real words without consonants.

So it does happen. But it takes a very careful, tuned-in ear to decipher it.

And usually, we hear one or two real words one day and then nothing for weeks.

Babbling constantly, surely.

But true words are rare.

True words were rare.

Yesterday, Millie had a regular therapy session at our house. We were all sitting around the kitchen table, discussing feeding strategies, communication ideas.

She was babbling pretty well, even trying a few almost-words here and there.

We had spent about 20-30 minutes, just having one-on-one time (or actually one-on-three, if you count the therapists), reading books and encouraging communication.

Eventually, after reading the Disney book a few times, I asked her to point to a cat.

She pointed to a cat.

Then, I heard a very soft, very tentative, "At," under her breath.

I asked her to find the frog.

She pointed to the frog.

I heard her nearly whisper, "Ah. Ah," as if sounding out the vowel sound.

I asked to her find Baby Mickey.

She pointed right to him And then turned around, on my lap, and gave me an immediate, enthusiastic thumbs up.

"I found him! I did it!" she said, very happily, very proud.

Clear as day.

(OK, again, the consonants weren't really truly there, so it was more like an "Eye un im! Eye ih ih!")

So maybe it wasn't really "clear as day," but there was no mistaking what she said, what she was trying to say.

And she beamed.

***

We had our evaluation yesterday afternoon, about five hours later, about whether she would be a good candidate for an assisted communication device.

We got to play with the device, I got a lot of information, asked a lot of questions and watched to see how Millie would respond to it.

She loved it.

I won't say she immediately understood that the icons correspond to real-life objects and situations. But we were letting her explore the options under a "bubbles" screen. So we had real bubbles on hand. She would choose "I want to do it" on the tablet and then she would get to blow (or try to blow) bubbles with the real-life wand.

She would choose "I want to pop it" on the tablet and we would help her pop the real-life bubbles.

She got it, I think, after a while.

And then became incredibly interested in the tablet and what else it could do, like explain Christmas traditions ("I want to help decorate the Christmas tree" and "Is it time to open presents?" or "I don't want to go to church" (which both made me laugh ... and wince)).

Later, she was playing on one of "emotion" screens and she selected "I love" and then "mom" - and then turned around and gave me a hug.

Was it purposeful?  Coincidental?

I don't know for sure, but I bet you can guess which one I'm letting myself believe. 
- Bethany :)

Tuesday, December 17, 2013

'Tis the season!

Wow, am I behind!

As the holiday season continues and the single-digit countdown to Christmas begins, I figured I'd better spend some time getting caught up here.

This Christmas season has been so incredibly special. I've almost shied away from taking out the camera too much, afraid to spoil any of the good cheer spreading throughout our house. Lola has been completely enamored with all things Christmas and Millie, while harder to read, has taken a very obvious interest in the lights, sounds and merriment all around her.

It has been precious. So special.

So let's begin.

***

We decided, after coming this close to doing so last year, to get Lola her own Christmas tree this year.

We, of course, went and got a special pinky-purple tinsel tree. A total princess tree for our Princess.


We snuck it into her room one night and she awoke, surprised and giddy.

Christmas season had officially arrived.

She was thrilled.

 Notice her new Rapunzel braid? Thanks to a very thoughtful aunt of hers, it's her newest addition. And I swear she would never take it off, if the dog didn't find it so darn fun to chase around the house.

The one side effect of her very own tree was that I did not anticipate the tears.

Yes, the tears.

Lola bawled when she realized that I wasn't going to give her all of my ornaments, insisting that her  tree had to be "more prettier" than mine (our family tree).

She lost that battle. But I did let her decorate her tree, with all of whatever we weren't using (and of course some special new ornaments of her own). 

And I didn't even fix the areas that could be improved, like the leaning star on top.

Her tree, her rules.

It's beautiful.

***

As for our tree, finding it was a bit of a challenge, but I have a very dedicated and loving husband who didn't mind (much?) going to four different places and putting about 80 miles on the car to track down the perfect tree.

This year, there were two major additions to our tree.

This:


An ornament we purchased at Disney World this past February.

And this:
You know how some families have trains that circle their Christmas tree? Yeah, we got the Disney World Monorail! Love it!
We're so ready.

(OK, no, I'm not ready, not at all. But we're getting closer every day!)

***

Not to make excuses, but between work, volunteering at church and Lola's school, work, Millie therapies, Ray being gone a bit more this month, and work, I've been swamped.

But if I'm honest, it's not really all that stuff, listed above, that's keeping me away from this blog.

It's me. Having to make things more complicated than they have to be.

Some weeks ago, about four probably, Lola mentioned that she needs a new calendar. Because her 2013 Princess calendar is (obviously) reaching the end of its useful life.

Great! And easy stocking-stuffer, right?

Um, no.

Because I had to up the ante and came up with the idea of creating a calendar of Lola and the Princesses. Using her meet-and-greets at Disney World to personalize her 2014 calendar (she just happened to meet exactly 12 Princesses, counting the two Belles [Belle in the village (Epcot) and fancy-dress Belle [at Magic Kingdom]).

And while I very briefly entertained the idea of designing and ordering said calendar through an online photo-sharing site, I decided that was too easy and boring.

So I've spent the last few weeks crafting by hand her very own Princess scrapbook calendar.




The result? It's pretty fantastic. I know, I'm not being very modest here, but, truly, it turned out way better than I ever thought it would.

That said, I won't do it again.

I took the project too far and put too many elements into each page so the darn thing has to weigh nearly as much as my cat.

OK, maybe not that much (Lucy last clocked in about 25 pounds) but I do have a very real fear that Lola's calendar won't even last a month. 

But it sure is pretty!

***

I've struggled a bit this season to truly address Christmas with Lola.

Too early on, we started talking about presents. And while that was completely my error, I've been focused on trying to rectify that mistake and discuss the true meaning of Christmas, to get her to understand that it's not about the gifts or the candy, but about so much more.

We've talked often about Jesus, about what His birth means and we use our advent calendar daily to try to keep things in perspective.

She even appeared in her first Christmas pageant at church this past weekend, playing one of several angels. So she was hearing about Jesus' life, His story, His message, then too.

But I never knew if she was actually getting a grasp of the concept behind the Christmas Spirit, about why we celebrate this time of year.

That was, not until the other day, when we were at Target.

While there, battling crowds and trying to move us past the toy department, she again starting asking me questions about presents.

I wanted to groan. Was she really not getting that Christmas is about so much more than gifts?

"What's Millie getting for presents?" she asked. "How many will she get?  Will Santa bring her one present or more than one? Will she get lots? Or just a couple?"

I, of course, assumed she was trying to compare. Who was getting more? Whose were going to be better?

And just as I was about to snap something I'd later regret, she paused in the middle of the pasta aisle, touched my hand to completely get my attention and said, "Mommy, I want to give back one of my presents so Millie can have another one instead. I want my little sister to have a really special Christmas this year."

I melted.

The lady alongside us in the aisle, she melted a bit too.

Our angel indeed.


Merry Christmas.
- Bethany :)

Wednesday, December 11, 2013

Wednesday funnies

This is the girls getting ready for school on a normal day...

A closeup of Lola's expression (she is so her mother's daughter):

This is them this morning, as school was delayed two hours:


 Cuties.
- Bethany :)

Friday, December 6, 2013

Life with Lola


I let Lola stay up late last night.

We watched NBC's Sound of Music and had a great time, just snuggling on the couch and laughing a lot at various things.

Well, since I almost always have shows DVRed, this marked perhaps the first time ever that Lola actually watched real adult commercials (versus for example Disney's commercials for its own products and future kids shows).

The St. Jude's commercial came on. The one with Jennifer Aniston and the like, featuring adorable little kids, including those without hair due to their ongoing chemotherapy treatments.

I didn't think anything of it, until I noticed a few seconds after it ended that Lola had stiffened a bit was less jovial.

"What's wrong?" I asked, suspecting the answer.

"That little girl didn't have any hair. Why didn't that girl have any hair?"
 

So we had a discussion about how some kids get sick, some kids need treatments that make their hair fall out.

Cancer. We talked about cancer.

"I never ever want to get cancer," she whispered afterward, twisting her blonde locks around her fingers.

I think I did OK, talking about how in theory, yes, it is possible, but not very likely, how it's mostly kind of rare for kids and it's not something everyone gets, like a cold or tummy sicknesses.

We talked about how some kids have different sicknesses and challenges.

And I never said her name, but Millie was on my mind, as always.

Not like she was yesterday, but in a more positive "we are so lucky" kind of way.

Millie's challenges are surmountable. Nothing tells me otherwise.

We're fortunate, so fortunate.

I'm thankful for the reminder.

- Bethany :)

Thursday, December 5, 2013

Millie


It's hard to describe where Millie is at in terms of speech.

She babbles, she imitates (babababa, dadadada, mamamama) and she gets excited when she does it, knowing that she's making progress. And she is, every day.

But she isn't talking.

Though she wants to.

So badly.

She is signing incredibly well, learning new signs as quickly as we can teach them to her.

She gestures and indicates; she's resourceful in trying to communicate to us her wants and needs.

But it's not the same.

She gets frustrated when we can't figure it out.

We get frustrated when we can't figure it out.

There are tears, on both ends. No matter how many our successes - and there are countless victories on a daily basis - just one impasse, one indecipherable exchange, can set me off.

Even if unwarranted (I know it's not my fault), I feel like a mommy failure when I can't understand her, when I can't give her what she wants. When I finally have to throw up my hands and say I just don't understand. And she throws herself on the ground, crying, defeated, and then she retreats, refusing to sign or communicate at all for a while, sulking, pouting.

It's heartbreaking.

Yes, as a whole, we're all doing good; yes, she's doing great.

There's no denying that.

But we need more.

She needs more.

So, after a few months of prodding, we're moving forward toward something that may help her, may help us. In two weeks she'll have an evaluation with a professional to see if she would be a good candidate for an assisted communication device, a tablet-like device that would allow to select buttons (icons) that would speak for her.

She chooses "I want"  and then "book" for example.

It surely won't be a golden ticket - even if we're found to be a good match for the program, we'll have to fight insurance a bit I'm sure and then it's going to take some dedicated work to teach her to use it.

But if we could hear her, truly hear her, it would make a world of a difference.

Fingers crossed.
- Bethany :)

Tuesday, December 3, 2013

Millie and me


We have much to be thankful for, this year and every year.

A longer update will come perhaps tonight, but I just thought I'd share a cute photo from our weekend "home" to the Cities. We had such a wonderful time. With everyone.

Happy December.
- Bethany :)