See the world!

Epcot was not high on my priority list, in fact if the characters from Frozen were not only at Epcot (which we didn't see because the wait was 2-5 hours, seriously!!), I probably wouldn't have gone!  As it turns out we wished we gone earlier in the day instead ow waiting until 2pm because it was a great place for the kids!

We met Snow White in Germany, and she was by far the best character.  She had the voice down and charmed both the kids!

Toby was really shy with her

But she got him to flex!

I sent this pic to my Chinese friend in China and she actually responded with "Are you in China?!"

Emma got this adorable Chinese parasol, which turned out to be a genius idea for keeping the sun off.

Me and the boys in Morocco!  I miss my little squirrel (James!)

where we saw Jasmine and Aladdin.  I was not impressed with these two!!

Emma in a wookie hat at the Star Wars ride!  She was so fearless going on rides, it was awesome!!

Eating fish and chips outside a pub in England!  Believe it or not, we all concurred tha it was some of the best fish ever, and the "chips" were pretty good too!

Loving my iconic images!  It was cool to see Mary Poppins walking through England!

The stroller came in handy for everyone to rest!  Although you'd never see me let my kids sit on the street in England, or much of America, Disney is so relatively clean and well-maintained.  When you go elsewhere it pales in comparison!

The Nemo ride was "boring" but the aquarium at the end was cool.  I love aquariums, totally my fave day out!

We fast passed the fireworks so we got really good spots to watch.

We took up as much space as we could!

New lands

Back to Florida...

Saturday was a trio to Legoland.  We didn't realize they closed at 6pm so our afternoon start meant we did not have much time to take in the great Lego creations.  But some great rides, good weather and family made for fun times!

Emma stood here for ages making the little guys march back and fourth!

Toby was too scared to approach Darth Maul, until the girls did, then he had to get in on the action!

Don't let the pouts fool you - they were having lots of fun!

Emma went to Lego driving school.  It was cute, they had to get trained and then could drive aound a little town.  She totally got it, but stayed around the edge, away from crazy drivers!

Daddy won Emma a unicorn (which meant Toby got to buy Legos!)...

Then we stopped at Cracker Barrel for dinner, at about 8pm.  This southern style eatery has rocking chairs for sale outside, which are fun while you wait for a table. The kids tried their hand at checkers!

James barely made it through dinner,

While Toby harassed Caitlin

And had some ice-cream!

 

I couldn't resist this apple pie dumpling thing, but I was so full I ended up sharing it (gasp)!

Wrestle mania

On Sunday Toby tried to steal Emma's Frozen book.  He knew exactly what he was doing, but may have been surprised when she caught up with him...

I got some video of her also pounding him into the ground!

Last night he was baiting her again, and paid the price!

Once she gets him down, he's pinned!  I guess being a dead weight could be handy in wrestling.

We were cheering her on - Toby needs no encouragement!!

Learning experience

How's this for a Moebius/special needs mom moment...?

The kids are outside playing with the kids next door (see, it's not all TV and movies!) while I was mowing the lawn (which I actually rally like to do and it burns good calories!!).  They had started off playing hockey, but were now running around.

I observed that it seemed to be Toby and the two neighbors kids, K (age 8) and E (age 6), together and Emma on her own.  I let it go.

After a while, when I was paused in my landscaping endeavors, Emma walked over to me and said "everyone's scared of me!"  Sensing this was possibly a game of sorts I asked "why", to which she replied "I don't know." and headed off.

I subtly observed the same thing for a few more minutes as I went over it in my head, how to respond.  Finally as I saw the three about to turn on their heels and run back around the house from Emma, I made my move.

I stopped the mower, and called everyone over.  (The neighbor parents were inside, but I think they probably did here what I said and I made a point to tell them later myself.)  I calmly (believe it or not) explained that I know they are playing a game and it's meant to be fun, but if it's a game where chasing each other is the major part, it's really not fair because Emma simply can not run as fast as them.

Now, to some that may seem out of line, survival of the fittest, she needs to run more etc, and I get that.  But here's what many people don't get (including Emma I think!), Moebius Syndrome effects more than her smile.  I'm not saying that all kids are like this, but Emma's overall muscle tone is low, and her balance is poor.

Emma can not stand on one leg, jump off a step without stumbling, she can't even lift her head off the floor if she is lying flat on her back.  So to say that she can't run fast because she's unfit, would seem ignorant.

The kids seemed to understand and while they continued to play a variation of the game (Hide & seek at high speed among others), I saw them make a step toward compassion and inclusion by letting her win occasionally - as Emma told me, happily!  I made sure to shout encouraging "well done" type things which the kids then echoed.

Was it right that I intervened?  I have no idea.  Do I want Emma to get the idea that everyone should make exceptions for her? Uh, NO!  But I also want her to realize that her difficulties are not always because of a lack of effort or discipline on her part.  I need her to know that every step she takes, even every word she says is a miracle to me, and she is very much good enough!

I've never really considered my viewpoint on how to accommodate disabilities or address them with fully able kids, it hasn't seemed necessary.  Simply getting people to understand and not feel awkward was my goal.  Now I need to work on how far do I believe people should make exceptions.

The good, well great, news is that Emma handled the whole situation with such grace.  She did not get mad at the others, and it took a long time for her to be upset - though I'm not sure if she was more upset that she couldn't keep up or that they were playing a game she couldn't really participate in.  I have to say, this will be great if the kids can get Emma moving around more, so maybe she will find she's even more able than we know!

Emma's homework tonight!!

Too fast

I had an email from the surgeons office in Manhattan, moving a step closer to making an appointment to see Emma.

That's all, just an email but I'm a wreck!! 

We are going to have to choose which surgery to do, and when!  But before that, it's figuring out the cheapest and least complicated way to visit two surgeons over two hours away! 

I guess first I need to find out how to check if insurance will cover the procedure, and subsequent therapies! 

Now I remember why I was putting this off - so overwhelming!

Did I mention I'm also supposed to be applying for citizenship too - also scary and overwhelming?!  What was I thinking!!

Gems

The other night, as I lay down with Emma at bedtime, before we prayed and sang, she asked me a question. 

Em: Mom, how many kids am I going to have? 

Me: I don't know.

Em: I could have 100, wouldn't that be crazy?!

Me: You might not have any.  And that would be ok.

Em: No kids!! ... Well, I would get to go on lots of dates with my husband!!

Love how this girl can spin it!

This morning she said to me...

Em: I'm the only girl in our family with Moebius, right?

Me: Yes.

Em: I really like the Moebius conference, can I just keep my smile?  (Thinking that having smile surgery would mean she no longer has Moebius and she wouldn't be able to go.)

How on earth did I end up with such an amazing little girl?!!

Moving forward

Last night I emailed a video and pictures to two plastic surgeons.  Both in New York, they are experienced in the two techniques of facial reanimation surgery. 

The video shows Emma talking, smiling and closing her eyes.

I am so excited/nervous/anxious!

I first sent inquiries a couple of months ago and decided not to do anything until after Florida. Now it's in motion.

The two offices are about 3 hours away from home, and about an hour apart.  My hope would be that we could go to both in one day, for consultations and be home!  Both offices are close enough where travel would not be a major issue, though there are few places more pricey than NY for accommodation!

So many questions, I'd better start writing them down!!