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!!

Fabulous and 35

I had a fun birthday.  Starting with dinner Friday night, with some of my best friends.  I got a few gifts...

Some imported English chocolate, a Jack Wills gift card, coconut fudge and Pureology shampoo ($$$)!!

We went for hibachi, which is a huge flat hot plate and they cook the food in front of you...

(No, it's not all mine!!)

After waking up at my leisure on Saturday, Scott and the kids came home, bringing breakfast sandwiches!  We also enjoyed cake...

It's a chocolate cake with salted caramel icing.  Delicious.  Made by my friend and baking fiend Katie!

It was a little unique this year as we have a guest visiting for the weekend.  I met Kendall on Facebook.

She is 29, mom to 18mth old Easton, a little boy with Moebius.  We've been pals for around a year I think, but never met until she flew in Friday for a weekend.

Her son has club feet which adds to the challenge of Moebius so it has been encouraging for her to meet Emma.

Kendall's from Nashville, so today we did a little sightseeing...

The Philadelphia Museum of Art

Some wild turtles in the river!

And the Rocky steps...

Emma was behind but kept going

Then we went to IKEA to browse!

But stopped in Philly for a classic picture!

And home for more junk food!

Apparently it's all downhill (or at least gravity is stronger) after 35, so I'll be back on the workouts Monday!!

35 and on

Is it really possible for life to get better with each passing year?  Not easier, not less complicated, just better.  More joy found, more love given and received, greater freedom, increased peace.

As I turn 35, my answer is yes.  I'm not comparing my life to anyone else's, just to where I was and what I thought would happen.

Every journey has a destination, and when you are sure you're heading in the right direction it leaves time to enjoy the scenery, live in the moment and embrace the new experiences and people you meet.

I had dinner last night with my closest girl friends.  Women who have chosen to love me, support me and include me in their lives.  It was awesome.  I did not need to pretend I was someone else, I was not worried about offending anyone, and I laughed so much my face hurt!

Scott not only took responsibility for watching the kids so I could go out, he arranged for them to stay out all night, so in the morning there would be no getting rudely awoken.

And that's why having him in my life has been the best gift!  He gets it.  He gets me!!  It's not money or presents or wild gestures. It's being known, loved and cherished.  I'm so thankful.

Here's hoping for another year pressing forward, moving along and growing each day!

Time for some Magic!

We tried to apply some of the lessons from the first two parks and be strategic in the first of two days at Magic Kingdom!  Just planning for two days instead of cramming with one was strategic and by all accounts is the way to go.  So many people don't get around the whole park in one day.

Our plan was to head to two of the lands this time, and then cover the rest next time.  It made the day less stressful, which was good because it was hot!!

One thing that I thank God for was that the kids had such a great attitude all the time.  They got along well and switched who they sat with, or played with.  The boys often stayed with my parents because they were too small (or chicken - Toby!) to go on what the rest of us did!

First order of business, the obligatory "selfie" pictures!!

Caitlin and I opted for pouty "duckface"!!

Emma and I were a little less serious!!

Emma asked for this shot after I took one of Caitlin!

Fast passes are crucial at Disney - three queue-jumping passes that you can select ahead of time.  Scott and Jon were champs at handling this and while they sorted stuff out, Dad and the kids let off steam!

Another Toy Story ride, followed by our attempt to contain the kids!

Emma was a daredevil at Disney.  She wanted to go on everything and showed no fear!

That's Space Mountain, and it is a roller coaster in total darkness.

We got to see it with the lights on and it looked formidable!  Didn't stop Em riding it - in a single-file seat!!  And she loved it!!

 The sedate moving train gave us all a break!  Boys in one car...

Girls in the other!

Picture time with "Stitch"

And although Caitlin refused to take any pictures with characters, she had no choice with this one!  (She secretly loved it and even bought a big soft Stitch!)

 The Raceway was right up Toby's alley, and not "too fast" for him!

Emma drove our car (on a track of course!)

Toby drove Scott!

The Dumbo ride was a must and Toby was excited to do it!  

Teacups, another favorite, but the spinning made me very nauseous!!

Everyone benefited from the double stroller at some point!  You couldn't tell these cousins had not grown up together.  They were the best.

We waited in line for an hour to see Ariel!  That was probably the hardest one!

Emma joined in a dance party with The Incredibles before we left.  My mum did too, but I won't post pictures!  ;)

Day 1 of Magic Kingdom, done.