The kids are supposed to eat breakfast in the dining room (at the table), but they have adapted!

So they can watch the TV!

Busy little bees!

Emma had her first oral placement therapy today.  It involves a lot of biting and jaw strengthening exercises.  She NEVER chews on her right side, so that is a big area we have to work on and well as encouraging her to try to move her lips.

I'm not going to lie, this is not how I would like to spend $200 per month, however it is more important than anything else we would be doing with the money.  It also, coincidentally, works out quite perfectly that it's about the same as Toby's tuition which he won't need after May.

Emma is also on her last week of gymnastics and has said she'd like to do it again.  So, it looks like we'll sign her up for that through the end of June - right when we will be swimming at the pool every day.  Again, it's expensive stuff, but $20 per week on Emma's strength and fitness - with her enthusiasm! - it's a steal.  Some people spend that on fancy coffee each week!!

All this is requiring a lot more discipline on our part, especially if we want to do other things.  Rather than resenting it, we are thankful that we have been learning to let go of things that aren't important to invest in things that are.  But we make sure we still enjoy life, with financial peace!

You can't ever be completely prepared for a big emergency, but if we can get consistent in our habits, we stand a greater chance of weathering a storm.  Beyond that, we've seen our God come through in epic ways and believe He remains with us.

T-Ball

Toby entered the arena of athletes this past weekend with a parade and first game for the White Sox!  And who better to coach this child prodigy than his amazing Dad!!  

He's playing T-Ball, which is like baseball except little kids hit the ball off a giant tee!  They play for 2 innings (baseball has 9 innings, plus extra if a tie), no one gets out, no score is kept and no one wins - at least not yet!  However, Scott had those 5/6 year olds engaged and fully participating, like he'd been doing it all his life!

Since Toby is #1 (he got to pick his shirt first!) he was the first batter in the first inning, and the last in the second, which meant he got to run round all the bases after his hit - a home run, sort of!!

Here's the day in pictures!

This is his buddy Dillon, who lives across the street - Scott arranged for him to be on our team.

 Toby told Scott here that he was scared because the other team looked good!  But he overcame it!

and he's been telling everyone about his home run!!

Game one over.

I think we have 12 games to play in the next two months!  Some weeks there are three, others one or none!  Then there's additional practices when Scott can squeeze them in.  It will be busy until June around here!

Making progress

This weekend marked my 3 months on Weight Watchers, and I've done pretty well...

I never expected 20lbs that quick, but it was steady and I've been able to enjoy my favorite foods.  

I'm now at the top end of my healthy weight range, so I've a little more to go until I start just maintaining.

The best part is the freedom in understanding that I'm a food addict!  Sounds cuckoo, but just like other addictions, food impacts your body chemistry and sugar especially is addictive.  You can't stop eating of course, so I'm in the process of retraining my brain and my relationship with food.

I feel so empowered and healthy for the first time in a long time.  It's not a diet, it's going to be a lifelong journey, there will be no "not thinking about what I eat".  

Sure, I will have struggles and fails, but getting right back on track instead of wallowing in guilt and frustration is key.

This is as much for my kids as myself.  I want them to have a healthy relationship with food, not use it as a coping mechanism or friend!

Resurrection

Has it been almost two weeks since my last post?  Wow, that shows you how busy we've been.  No time to sit and write.  Thankful for some time to chill on this most thought-provoking day.

As you might expect we went to church today, or all least three of us did - Toby had a fever and has been battling a tummy bug, so Nanna and Pops kindly watched him while the rest of us went.

Emma was excited to wear her new dress, and first pair of heels!

She was adorable trying to walk in the wedges.  And excited we were both wearing similar sandals!

Easter is a big event in any church.  Easter Sunday (or resurrection Sunday if you want to point out that the word Easter has no relevance!) is the day that celebrates our hope.  The birth of Christ is super important, and the sacrificial death of Christ, bearing the weight and consequence of your sin and mine, that's big too.  But Sunday, the empty tomb, is our hope.

Without the resurrection, death is the final word.  But look carefully - death was the punishment for sin, before sin, death was not an issue.  So, while Jesus allowed not only the physical display of God's wrath to be laid on him, but all the weight of our sin on his mind.  You know, the torturous agony of guilt, shame and deception.  The same feelings that drove Judas to kill himself!  Christ also bore that agony on the cross.

And then he died.  For two days that seemed like the end.  The body was buried, the disciples, scared for their own lives, locked themselves in a room.  They'd seen Lazarus raised from the dead - but Jesus was the one who did it!  Resurrection was not on their mind, it was over.

But on the third day, the women find the tomb inexplicably open, and are told by angels that he is risen.  He the. Appeared inside the locked room, to the disciples, a fully present physical being - not a ghost or mirage!  They touched him, hugged him and saw his wounds.

What does that mean?  It means that Christ overcame death, it could not hold him and he came back. 

Christ died so that you would not have to face the final judgement for your sins - he took your place.  The only response that is required - and a response to the message of Easter is required, you can't ignore the reason - the only response is will you believe?  And will you follow?

Believe that there is a God and whether in thought, or speech, or action, you have broken his law.  The sentence is death, eternal separation from God (which is hell).  You can stand trial for yourself, or you can believe that Christ is your substitute and your debt was paid by him.

Then what?  So you believe that to be true, what next?  Well, given that God gave his only son to die, so that you wouldn't have to, and so that you could have a relationship with God, I would say that the next step is to follow.  As you ask God to show you how you can express your thanks and love to him, he will reveal the things in your life that you need to lay down.  Distractions, sins, harmful habits.  He will transform you inside to the person he created you to be.

He doesn't ask you to be good, he doesn't ask you to be a bible thumper!  He just asks that you seek him.  Pick up a bible, read it.  Talk to him, pray.  Confess your weaknesses to him, he will strengthen you.

Because without Jesus resurrection and gift of eternal life, there is no hope for any of us.

On Tuesday (March 24) there will be a Moebius family featured on the US TV show The Doctors - it's a medical talk show on NBC.  I don't know if I'll be home in time to see it, but I'm hoping it will be online after and I'll post the link!

Obedience.

Obedience. It's such an emotive word! We picture dog training or strict teachers in the classroom! But that is not the whole picture.

As a parent you soon learn the importance of obedience. Your past,experiences and big world perspective often mean you have more wisdom than your children. You have a road map that avoids pitfalls, valleys and cliff edges, that if only they would follow, their life would be blessed.

But they fight, struggle and resist! Why? The bible says we are all born with a "sin nature", a rebelliousness that seeks independence and its own fulfillment. (It is an hereditary condition, inherited through the ages from Adam and Eve!)

Oh, if only they would listen the first time! Even if you are not a parent, you can look back and think of ways you might advise your younger self to go a different path.

The bible is very clear that we reap what we sow, and we reap from where we sow. Many of us learn that the hard way. When we sow our time, money and energy into our self and selfish desires, it can often lead to brokenness, emptiness, destroyed relationships and ultimately unfulfilment.

Jesus said that if we love him, we will obey him. When I think of this command I also hear this : if you believe me, you will trust me.  If we believe that God is all powerful, and that his heart is for us.
In order to follow Jesus, you first must believe that he loves you, unconditionally - which he demonstrated in dying for you.

So, if we believe, then we follow, we obey. How we are to obey God is not some great mystery! He has given us an extensive guide of parental wisdom, aimed not at curbing our pleasure in life, but in
ensuring it! When we follow after Jesus we are promised love, peace, joy and many other things we search for to no avail in the world?

Why? Because many of us are little more than rebellious children refusing to listen to the one who loves us above all else.

We pray and pray for our health, finances, relationships. We lament when they fail and we struggle. And so we ask God to help. But I have increasingly come to the realization that he already has helped.  He already told us how to impact these things.

Want better finances? Are you saving, tithing, giving?

Want better health/weightloss? Are you practicing self-control, wise choices, avoiding gluttony or even balancing work with rest?

Want stronger relationships or even reconciliation? Are you freely forgiving, accepting responsibility and apologizing, demonstrating compassion and helping those in need? Are you loving, giving grace
and mercy, being kind and generous?

We have been deceived by our culture to look out for ourselves only, and to pursue success. These are values God rejects. He is looking at our character, our values and our heart, above all else.

If only we will believe that God knows best. Maybe then we will experience what he has for us, and it will be so GOOD!

It is MARCH 21, right?!!

No, really - it is the first day of spring!!

Getting rear-ended at 7:30am when you are on your way to a hospital appointment with your kid, squeezed in before work, is probably not the best thing that ever happened to me.

But it is an opportunity for two things: 1, that Christ would show up in a powerful way, and 2, that Christ would be displayed in my reaction.  One out of two isn't bad right?!

Jesus totally showed up.  For one, I was totally calm.  I was not at all angry or frustrated even.  I was not upset and not one tear tried to squeeze out.  If that's not a miracle, I have nothing for you!  In addition, I have no other explanation for how my car did not then plow into the huge truck in front of me.

Now, when I did get out of my car, my first word was not "praise"!  (Yeah, still working on that tongue issue!), however I think I was extremely gracious and gentle - but since this guy did not know me from Adam, he wouldn't know that it was not my nature!

None of us were hurt (including his car!) and Emma had a story to tell her school friends!

Poor Toby, he did not want to go to school again today.  He wanted to stay home and "have fun".  I suggested school was fun, but apparently all he does is boring "papers"!

They have a week off at the end of the month but he's not good with timescales so he couldn't grasp the long range goal!

Once I got him in the car though I started making up silly songs and got him laughing!

De Ja Vu

When Emma was less than a year old we initiated a little-known body brushing therapy that required flying to Orlando every few months to meet with a therapist from the UK.  We did it a couple of times before the economy tanked and all the participants bailed out.  We were looking at thousands of dollars a year, but were willing to try and make it work.

Last summer we heard about a different therapy, for speech and for mouth closure.  We saw results and were sold.  So we signed up to participate in a clinical study for 3 months, that would get the therapy more widely available.  After 7 months we finally had the first therapy session on Monday.  It was long (2+ hours) and arduous.  We weren't sure how practical it would be three times a week, even just for three months.

Then last night I go the call.  The study was cancelled due to insufficient subjects.  Rather than being a downer, this is great news!  The team is honoring their promise to send us all the tools from their program FOR FREE, create a therapy program specifically for Emma, and train a therapist to give her the therapy!  Perfect.

Now, while this is an answer to prayer, there is one catch.  Emma does not have an existing speech therapy program, and we are not sure how to get the insurance to pay for one who will be allowed to give this experimental therapy - since insurance companies want to control what their money covers.

So, it looks like we are kind of back to the position of paying out of pocket to get Emma what she needs.  We have the willing therapist, we have the willing subject (Emma!), we just need the finances! 

We met with her therapist on Monday and we are proceeding.  We agreed a "price", though she was surprised when we mentioned it, because it hadn't occurred to her to think about it!  We truly believe she cares for Emma, and is genuinely motivated by a passion for her discipline.

Please pray with us for success!  We are hoping that this therapy will help Emma's speech and mouth closure.  At the very dream end is that she might develop the ability to smile!  With God all things are possible!!

Toby: I don't want to go to school.

Me: if you don't go to school, you have to get a job. But guess what? You can't get a job if you don't go to school. Go get dressed.

#toughlove

Heating up

Sorry if you were waiting on my update - the heat went back on Friday evening, and not a moment too soon.  I was doing my very best to maintain a positive attitude throughout the three days, not least because we technically had heat.  But I do not deal well with the unexpected and apparently have not improved much on that!  So couple the heat issue, with a snow day and another issue I'm not yet at liberty to publish, the whole week was a major test for me.

I'm thankful that the kids are back in their own rooms, the basement is once again toasty and warm, and we can all leave the house at the same time!

You may notice that finances were not listed on my "issues", which would probably have tipped me over the edge if they were.  I am so thankful and blessed to be able to say that we have been doing very well at reinstating the principles from Financial Peace University and a consistent stream of requests for Scott's craftmanship has meant we could take the blow without much damage.  (You can never fully prepare for the unexpected, but there is peace in knowing you've done your best!)

So, we'll be starting a new week and trying to get back on track.  The temps are going way up - 40f never sounded so good, and the snow is already melting fast.  The clocks went forward last night, so we edge closer to Spring by the day!  I already bought my first can of sunscreen - building a supply ahead of time!!

March madness

The beautiful aftermath!  

Emma has school, starting 2 hours late.  I'm working from home because we have to keep the heaters going and they can't be unattended!!

Where is spring?

On Tuesday night we noticed a burning smell in the bedrooms.  Not fire burning, more rubber burning.  We suspected it was coming from the air vents - we have an HVAC system that blows hot air in winter and cold air in summer.

A few hours later I noticed the temperature was lower than we had the thermostat set to, and realized I hadn't heard any air blowing for a while.  A quick examination concluded the fan was kaput!  

That was around 11pm.  Scott called our HVAC company, owned by friends of ours, and left a message.  We got a call back shortly after and they said they'd be over at noon Wednesday.  It was fairly mild that night so we brought the kids in with us and our little space heater (fan heater in the UK) and went to sleep.

Wednesday came and of course the part that is broken has a 24-48hour delivery time.  We have a great HVAC system, but that means nothing when it's down!

Did I mention that Wednesday night and Thursday were forecast as the worst storm of this already ridiculous winter?  It was, and the temperatures are dropping in to the 20s.  Scott rounded up a number of space heaters from friends and family to get us through it, as long as we can stand it!

Now this is the really cool/weird thing... On Tuesday evening, while the heater died, Scott and I were working on a project.  We were making a diagram of our electrical panel - it was never labelled and we wanted to know what is what for each breaker.  We got that all figured out.  Why is it cool?  Well, space heaters use a lot of power, and if we plug them in on a busy circuit, like the fridges or the microwave and oven it could trip the breaker!  So, we have been able to plug in several heaters, all on different circuits in the rooms we need them!

So, it's Thursday morning, school is closed and we are about 1" into the 5-8" accumulation.  Driving in to the office with it only getting worse seems dangerous, and I don't think I can focus on working from home with the kids and cold!  So, wasting a vacation day seems like the only option.  As for staying warm, well, the living room and bathroom have heat, as well as our room.  

I think I'm going to use the time to clean the house and do laundry, and all the moving around should keep me warm!  I wonder if the kids will be okay watching TV all day wrapped in blankets?!

Boys are gross

This morning, right before it was time for me to take Toby to school I realized neither of us had brushed our teeth.  Reluctant to leave the sofa, I ended up carrying him upstairs like a baby!! 

I put him down and went to brush his teeth, but first he let me know, and see, he was chewing on a fingernail!  Removing it himself he asked "can I put it back in after?"

Ugh!  It is nasty, but I take away two positives: 1) I don't have to cut his fingernails! 2) at least he gave up biting his toenails!

Gross.

What do you want on a night like this?  The heating to stop working, of course!  Dream come true, not!!

Sports news

In other news, while we are inundated with snow and freezing rain, Toby has started training for T-Ball, which begins in April.  T-Ball is basically baseball, but instead of the ball being pitched, it sits on a giant tee and gets hit by the player.  It's basically the first level of baseball for kids.  

Toby seems to have a great "arm" (meaning he can throw the ball far, and pretty accurately) for a kid who's never been trained.  He's also a fast runner and, when I went to watch for the first time on Sunday, I noticed he is really focused.  Probably helped by his shyness, he was not interested in goofing off, but was listening, watching and following instructions.  He seems to be enjoying the outlet for his energy.

Here he is lined up for some drills, with our friends little boy in the foreground. 

We hope Toby will gain more confidence socially, as well as in his sporting prowess.  Now, if I can just get him interested in reading!!

Futuristic friendships

Today Emma made a new friend!  

I received a Facebook message from a Moebius mum in York, UK saying that her daughter had seen the pictures of Emma doing gymnastics and wanted to get to know her.  We've commented on some posts together before and the girls seem to have similar personalities.  So, naturally I agreed.

This morning I got this email:

Hi Emma
My name is Amelia but some of my friends call me Millie so you can decide whether to call me Amelia or Millie I don't mind 😆
I am 9 years old and my birthday is the 10th of October
I am in year four and my school is [xxx] primary school
I have a brother called Ben he is 13
My favourite colour is turquoise I love swimming,singing,acting,

writing and drawing
I hope we can skype
                                              From Miliie

 

Emma was eager to reply, as I'd already told her about Skyping with Millie.  This was her reply:

Hi Millie!

I am amazed that you love all the things that I love.  I would be very
happy if we could Skype!

I love your curly hair!

Love emma hope😍

 

When we did finally Skype there was some kind of issue, and the girls ended up using Facetime instead, which seems far more reliable!  I let Emma take the iPad to her room, which was also where Millie had hers, and they chatted briefly before it was time for Millie to go to bed.

 

It really is so sweet to see two girls who are so outgoing, and friendly, connect in what might be an amazing encouragement to them both as they grow up.  

I'm often frustrated with the intrusion technology has allowed and we've often invited into our lives.  But then stuff like this happens, something that 20 years ago was a crazy "futuristic" concept on the Jetsons, but here we are with video phones!!  Proof once again that it's not hardware that is good/bad, but the purpose for which it is used.

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!