February 28th is Rare Disease Day.  Moebius Syndrome is classified by some as a rare disease.  I, personally, am not a fan of the distinction!  Just being honest.  It has to do with [my] preconceptions of a "disease".  The word, to me, suggests a progressive, life-threatening, contagious illness.  While it may be some of those (not "contagious", not even hereditary!), that's not something I want people to think of when they think of Emma.

That said, I love the graphic the Moebius Syndrome Foundation put out, with a picture from the 2012 conference in Philly!

(She's sitting on the floor in the middle!)

Before school today I beheld a rare sight - the Tobymonster behaving like a little boy!!  As opposed to a screen zombie!!

The TV was on but he was playing with his cars instead.  

I can't wait for Spring when he can play outside again!!

I think we need somewhere to display the kids stuff!!

Amazing clarity

When I was a kid we had "spellings" to learn.  Nowadays they are called "sight words".  Kids learn them so that they are recognized quickly when reading.  Emma's class is on 111-120 of the 500 the schools here use, and although the she knows about 495 of them quickly, we practice what the class is doing.  Spelling them from memory, and writing them In a sentence for context and spelling.

She has to come up with her own sentences, and tonight she had some great ones, but I'm sure you can guess which one made my heart jump for joy!

To many people, living for Jesus sounds like crazy nonsense.  But to us it shows that she understands that she was designed and made by God, just as she is, because he has a purpose for her life.  She knows that she needs Jesus as her savior and that we live for him because he died for us.  

Living for God means putting his values and priorities first in our lives.  What are they?  Despite what the media likes to say, it's very simple, and very good!  Jesus says that the most important command is to love God with all your heart, should and mind.  Then you should love your neighbor.  And since Jesus equates obedience with love ("if you love me you will obey my commands"), we are to love others.

I want to live like that.  It's not always easy - selfishness is strong in me!  But Emma has grasped this very early on and I believe that she will have a strong foundation of loving others.  People don't always love us back, but that's not the motivation!  The motivation is our love for God and his love for us!  While we all get hurt, rejected and disappointed, we can not become jaded or unforgiving.  We have to focus on our source of love, and if it's God, then you will never go without.

Snow Day

Failed post from last Tuesday!...

We woke up to the predicted snow fall, around 4", and school closure!  Scott headed off to work, because that man is unstoppable!  I went back to bed knowing I would stay home, either to work or take a vacation day.  Thankfully I was granted a work at home day, so no vacation time used!  

Before I sat down to do my 4.25 hours (yes, part-time is the best!), I went out to shovel the snow, saving Scott the task of doing it when he comes home late (though the overtime was canceled!!).

50 minutes later, with arms a combination of burning muscles and wobbly jelly, I was done!

Seriously, buying a corner house was such a rookie move!  8 years later and we are still shoveling by hand.  We should have invested in a good snow blower that first year and it would've saved us so much time and backache!  Oh well, my triceps look amazing!

Since I had to actually work today, the kids were stuck inside with me until Scott got home.  And for lunch I gave Emma the packed lunch I'd prepared for school, but made a duplicate for Toby!  He was so excited!

The cutest part about it was, although they had the same lunch entirely, it was packed differently.  So at first they thought only Toby had chips, and he immediately offered to share them as Emma lamented "you're so lucky!"  Then she found her Hershey kisses first, and offered to share them with Toby.  Rather than immediately freak and whine "that's not fair!", they went with teamwork.  I have to say, I'd probably have complained of the unfairness immediately, but I have a ways to go!

Parenting is an ongoing process, but these little moments of love and solidarity are so encouraging!  They argue and bicker, but overwhelmingly they work together - we often give them little choice!  I'm hopeful this is a good sign for their adult lives, and even marriages!  It's the ones that we spend most of our time with that we struggle to maintain respect, manners, kindness and love with.  

Snow more!!

We got more snow last night, on top of the frozen since Tuesday!  But the temperature went up, to 43f, so the snow is melting, which actually makes it good for building!!

Glowing reference

Just got a message from the mom I a boy who sits at Emma's table in class.  Apparently he's been having a rough time, and not so great a day, but told her that emma is a good friend, always nice and helpful!

I'll take that over sports superstar or academic champ any day!  Although I wouldn't put that past her either!

Scott came home yesterday and took the kids outside to play in the snow.  As usual, the neighbor kids popped out right away too!

Scott found a way to amuse them without a hill to sled down!!

On Monday Benjamin gave us a rare glimpse of the life of a rabbit, and confirmation that he is a happy bunny!

Rabbits are very nervous and rarely relax around people.  We have seen him chill out like this before

But this was the first time I've ever seen him sleep!

He was out cold, not even flinching when I went over to take a picture!  And this was with the kids in the room playing video games, so it wasn't exactly quiet!

I actually got nervous he might be sick and kept checking to see he was still breathing!!

Happy Valentine's Day

It wouldn't be valentines without a heart braid! <3

Fix it up!

Our house is about 60 years old, and the bathroom still has the original tile - mainly because it is backed by an inch of cement, walls and floor!  Demo will be a nightmare and since we only have the one bathroom, it never seemed like a good time to renovate.  We have replaced the sink unit before, but around the faucets in the bath the tile has been cracked and ugly.

 Scott works so hard doing construction other places, the last place he wants to tear up is his refuge!  But he decided he'd had enough and wanted to replace the tile.  So he tore it off

You can see where the water had eroded the cement!  Only needed a patch

Time for new tile.  They don't make this blue tile anymore, so he went with white to match the tub

New fixtures (lack of choice to fit this old bathroom!) and some grout later, shiny new space...

The funny part is, emma just asked me if he replaced all the tile.  She noticed it looked like new - she noticed he had regrouted all the blue tile too! Can't say I would've if he didn't tell me.

Of course now I want to redo the whole room, but that will take some planning to be without a toilet or shower for a week or more!

And we are still to find something he can't do!

Gym-tastic!

Emma had such a great time at gymnastics tonight.

Before we went I talked to her about being patient and persevering - she was concerned that she wouldn't master the cartwheel the first night!  I explained that I've never done a cartwheel, and they take a lot of practice!

It was important to me that she wouldn't get discouraged if she was struggling or behind the other girls, because there are always going to be people who do it better, and because I was not throwing money away!

We got there about 15 minutes early, while other classes were still happening.  We watched.  I wondered if my baby girl would be able to keep up - she who can barely do a somersault (roly-poly)!

It was a pleasant surprise when a friend from school arrived and was in her group, and the friends mom was hoping Emma would encourage her shy daughter to join in more! 

I needn't of worried (when will I learn that)!  The first thing they did was this:

Which she did at home the other day!

Then they were off!  This girl gave it her all.  She was doing all the moves, trying all the apparatus and running to get back in line!  When she did come to me for water she ran, full speed, so red in the face, and ran right back.  None of the whining we saw at soccer!

I was so proud of her!  And even after she fell back after getting down from the high beam and bumped her head, she went back and did more (after some cuddles!).

When we got in the car to come home I told her she did amazing and she said "I told you I would be a gymnastics master!"  I should never doubt her!

Emma's all set for gymnastics tonight, with her new leotard!!

Tobys jealous but he'll be starting baseball really soon.  

Throwback

Despite having thousands of pictures of the kids, there are times when I wasn't able to play paparazzi!  Just tonight a friend sent me these pictures she found, from 2009...

Toby's dedication, when he was about 3 weeks old!  Ah, the memories.

Forgotten dream

When Emma was just a few weeks or months old my mum contacted me about a segment on a local news show in England.  It was one of those human interest stories that you don't necessarily pay attention to.  But on this occasion the words Moebius Syndrome were mentioned.

Those two words that flipped our world around.  You just know my parents were glued to the TV!

The story, about a girl named Emma who didn't smile, but was doing gymnastics at school with the other kids.

For parents who suddenly had no idea what the future held for their baby girl, this was a ray of sunlight in a cloudy sky!  Maybe, just maybe our Emma Hope might one day also be able to do something like that!

I never forgot about the story, and was so excited to eventually connect with Emma on Facebook in the past couple of years.

And now, this week Emma will start gymnastics classes.  Though she might not have the skills of Gabby Douglas, this is so HUGE.  It's really just hitting me, the way this all played out, and how faithful God is to answer a prayer uttered years ago, in a vague hope.

Here she is practicing from a library book she brought home on Friday!

Keep watching!

I'm doing great on Weight Watchers, and I feel amazing.  

I've been this weight before, but something's different.  I got here on purpose.  I know how I got here, and how I will move past here.

It's like a switch flipped in me, and the food addiction (yes, that's right!) and lack of self-control have been in check.  

I know this might sound like a stretch but this is a spiritual journey for me.  Self-control is a fruit of the Spirit (Galatians 5), something that you see grow as Christ transforms you.

I can't tell you the countless hours I've lamented over feeling helpless over my appetite, and also spending habits.  The two things seem to go hand in hand!  And with Scott's agreement, and Jesus's help, we are making strides in both.

And hopefully we will leave a legacy for our family, so that the next generation will understand the peace and joy, the freedom that comes with self-control! 

Pictures

I have not had much time to write lately, but you know I've been taking pictures!  Here they are...

We've had frequent snow, but nothing really to write home about!  Of course, it's because I bought the kids snow boots this year!

We had some new friends over for dinner and of course it escalates into hammocks and wrestling!

(Anne won!!)

Then it was Sophia's third birthday, so we got together with family!  She's growing up so fast!

Plenty of Monday's!

Scott and the kids on the "phone"!

And nighttime visitors!

Toby decided one morning he wanted to fold all his laundry!