We need you prayers - Sean's (Scott's sisters husband) dad, Harry was in a huge gas explosion this evening.  He was working for the gas company in the basement when the house exploded.

At this point (10pm Thursday) we know he's in the hospital and has burns.  He's conscious and other people only have minor injuries.

Please join us in praying for his healing, the others who were hurt and the families that lost there homes in the subsequent fire.

And DO NOT touch the light switches if you suspect a gas leak.

It's Time to Redefine Failure

How funny that this devotional should be in my email right after I wrote my last post!!

It's Time to Redefine Failure
by Rick Warren

 “Fear of man will prove to be a snare, but whoever trusts in the LORD is kept safe.” Proverbs 29:25 (NIV)

Satan’s favorite tool to diminish your faith is the fear of failure. But you cannot serve God and be constantly worried about what other people think. You have to move forward. Proverbs 29:25 says, 

“Fear of man will prove to be a snare, but whoever trusts in the LORD is kept safe.” (NIV)

So how do you get rid of the fear of failure?

One way is to redefine failure. What is failure? Failure is not failing to reach your goal. Failure is not having a goal. Failure is not failing to hit your target. Failure is not having a target. Failure is not falling down. Failure is refusing to get back up. You’re never a failure until you quit. So if you’re attempting something for the glory of God, that’s a good thing. Failure is not trying and not accomplishing anything. Failure is failing to try.

Another way to get rid of the fear of failure is to never compare yourself to anybody else. You’re always going to find somebody who’s doing a better job, and you get discouraged. And, you’re always going to find somebody who’s not doing as good a job as you are, and you become full of pride. Both of them will mess up your life. Discouragement and pride will keep you from serving God’s purpose for your life.

The Bible says in Galatians 6:4, “Each of you must examine your own actions. Then you can be proud of your own accomplishments without comparing yourself to others.” (GW)

Did you notice that the Bible says there is a legitimate pride? There’s a good kind of pride and there’s a bad kind of pride. The bad kind of pride is comparing: “I'm better than so and so!” The good kind of pride is, “God, I'm proud of what you’re doing in my family, my business, my life, my walk of faith.” That’s the good kind of pride.

God hasn’t called me to be the best pastor in the world. God has called me to be the best pastor I can possibly be given the gifts, talents, and experiences he gave me. When you get to Heaven, God isn’t going to say, “Why weren’t you more like so and so?” He’s going to say, “Why weren’t you who I made you to be?”

Let go of your fear of failure, because anything you’re attempting for God in faith is a good thing, regardless of the results.

Moving fast

This week seems to be moving so fast!  Here's where I'm at...

I am on day 6 with no caffeine!  I know diet coke is toxic so I'm trying to give it up or at least dramatically reduce it.  Apparently it can also increase the sweet cravings, of which I already have too many, so cutting it may help there!

Surprisingly I have had less 3pm slumps than usual this week, which may also be due to being back on my exercise plan.  This is my second full week of Focus T25 and I have enlisted Scott to help me stick to it.  He has full permission to nag me and will also distract the kids while I do it.  He's so supportive he even ate all our ice cream so I wouldn't be tempted!!

Seriously though, exercise is the best form of anti-depressant and I was in a bit of a post-Christmas slump.  

Unfortunately being a Christian does not immediately eliminate the negative voice that most of us grow-up developing, at least not right away.  Mine became a little too loud over the winter so far, drowning out God's still small voice.

Earlier this week I hit an emotional wall as I struggled to accept the likelihood that I am going to fall short of expectations of me.  The feelings of failure and unworthiness crashing over me like a tidal wave.  

Thankfully I was already out of my nameless slump, (so thankful for some amazing preaching on Sunday mornings to speak truth in to my heart), so it was not long before I turned my eyes toward heaven for my help.

I very clearly felt God ask me why failing to meet those [perceived] expectations was so devastating to me, when my value, my worth and my purpose comes not from other people, but from God.

And there it was.  I have chosen to live my life by God's values and priorities.  I know that to be the good choice.  So I can not also meet all the expectations of people, be they family, friends or strangers.  You can not serve two masters.

Oh, the peace I felt at that point.  The freedom.  I have nothing to prove to anyone because God has already validated me.  

And so, I will do what I can, when I can, without compromising my values and beliefs - because to do so leads to a joyless, anxious, and ineffective life.

On Wednesday night Emma had a pajama party at school for the whole kindergarten at 6pm.  One parent had to accompany her.  She chose Scott, which I was pleased about, not least because in the past people assumed Pops was my husband because they see him with Emma!!

According to Scott they got the royal treatment, many of the moms remembering my Facebook post from Friday!  I'm not sure if it went too far, with moms ushering kids over to say hi to Emma, but I'm sure the teachers aren't so inclined!

I need to remember to tell her that having Moebius is not her purpose in life.  Her purpose is to love and serve God, and demonstrate his glory and strength by living with joy and peace despite Moebius.  If she chooses to become an advocate for others like her, that's her choice.

I wonder what else this week has in store?!

Home movies!

Toby designed a "fun" game for Benjamin!

Fun in the basement

http://instagram.com/p/jfVP7-O_vG/

Home-made "mountain"!!

http://instagram.com/p/jfEFDIO_mF/

Put a smile on!

Emma has her purple on!

I'm sorry to admit that I procrastinated too long and failed to get a purple shirt or scarf for today!  I will for sure next year.

I think this is the first year I've really been engaged in the awareness process, being a part of the Moebius communities on Facebook.

My school post has had an overwhelming response, with 70 "likes" (representing 70 kids in Emma's school) and about half commented with encouragement and their own special needs.

Moebius Syndrome is really rare, and while it may be hard to get real ground on awareness, the key is opening dialogue on how to handle disabilities in general.  

Often kids only need an answer to "why...?" And they are satisfied.  Adults over complicate the questions with how and when and what, to the point where it's intimidating to ask.

Granted their may be some people who look different but it's not a medical condition.  That's why teaching kids and adults to just be friendly, maybe even more than you would other people.  Let's face it, a kind word can transform the world of someone who is shunned and lonely.

America is very different than the UK in regards to greeting strangers.  But unkindness is universal.

Even if you are having a bad day, the person next to you may be having the worst day of their life. 

Awareness

Today is Moebius Syndrome Awareness Day!! Please join us and this wonderful community of families as we wear purple (anywhere!) and try to change how people see people.

This was my post on Facebook last night...

This is our daughter, Emma Hope.  She is the most enchanting, intuitive and inspiring little girl I've ever met.  She also was born with Moebius Syndrome. 

Moebius Syndrome is a very rare condition that has a range of symptoms. But maybe the most significant effect of Moebius Syndrome is that other kids often look at Emma like she is weird. When she approaches a kid or adult and says "hi!" but doesn't smile, they don't know how to respond. So they don't respond. Because of the lack of facial expression, happy or sad, people think she is slow, or does not have the same emotions. 

It can be hard to have a conversation with someone who you can't "read". She can not produce sympathetic expressions the way you would if your friend was sad. But she is so very smart, loving and sensitive!! 

Emma can not close her mouth completely to eat or when she talks. So her own name sounds like "Anna" when she says it. M, B, and P are not possible sounds! But she will patiently repeat herself until you get it. When she eats, you can see the food. She tries to use manners, but who wants to hold their hand in front of their mouth all the time. And try swallowing without closing your mouth! Really, try it now. 

Emma's tongue is also paralysed on one side and very small, so she can't lick her teeth or lips. She will face dental issues as she gets older. 

Emma's upper body is a little weaker than most. She can not open a new bottle of water, for instance. She can't swing on the monkey bars, and her balance is off so she can't jump high or run fast. But she can keep up a hula hoop like a pro!! This all might sound fairly minor, and we are thankful she does not have some of the other Moebius challenges like club feet or limb deformities. 

But if you really think about it, in this image conscious, visually stimulated, emotionally charged society that values function and health as though they are gods, well, just how difficult do you think this would be.  Friends and family are loving, supportive and encouraging.  But how about job interviews, first dates, high school, just trying to be accepted. 

And that is what Moebius Awareness Day (Fri Jan 24) is all about. We need more people to understand what Moebius Syndrome is, to learn how to relate to people who communicate more with their voices, body and action than a look. To not fear facial differences, to help us learn why they happen and so amazing people like Emma can believe that they are truly beautiful, valued and important. 

Before we encountered Moebius Syndrome, things like this made me so nervous. But now I know that it's better to try and make a connection with your foot in your mouth, than to avoid people because they look different than you. 

Please help us increase acceptance, understanding and friendliness toward people with Moebius and other facial differences. 

I posted it on my wall, tagged Scott so it was on his wall too! I also posted it on the school "Home and School" page, where many parents get the scoop on school events etc. The response was overwhelmingly positive and I am so hopeful that each year we can make a difference. Even if it is just in our community, it will surely help Emma as she gets older. She's now a celebrity!!

The things you learn!

One of the comments the school post on Facebook got:

Your daughter used to entertain my daughter in the speech waiting room at the [unit where she got PT] last year while my son was there for speech..She sang us songs, did ballet, told us jokes..such a warm, friendly little girl.  I have a son in first grade at the school and another entering next year.  If she ever wants a playdate, she is welcome  anytime..and my daughter would be thrilled too!

My little girl is awesome!!

Best Dad ever - builds a mountain for our first-time sledders!!

I'll try and post video later!

Can of worms!

It seems that our medical lull may be over, partly of our own making, but because so many things are inter-related.

Before we can really move forward with smile surgery, we need to address this possible sleep apnea issue, which starts with a Sleep Study.  It's been a few years, but it will not be fun going back in and getting all the probes stuck all over Emma and trying to sleep in a hospital room for the night.

Worst case scenario, she has obstructive sleep apnea.  Then comes diagnosing the problem, which may be her "enlarged" tonsils, requiring removal (read surgery!).  After a recent high profile case of a girl going into a coma after this routine procedure that causes some anxiety.  But you roll the dice with any surgery really!

Then we would be free to move forward for smile surgery.  Now, the community consensus seems to be that it is a huge risk to have it done here because our surgeon has not done the Labbe technique before (see yesterdays post) or the other method on someone with Moebius.

So, I contacted the surgeon in Long Island, NY who did the Labbe procedure on the lady in the video in 1985 and we will have a phone consult, then maybe go for a visit.

On the flip side, I had the pioneer of the original "smile surgery" (who is based in Toronto and will not do a phone consult) recommend someone local - and he gave me the name of two guys in New York also!  However, this doctor does come to the conference in July, so we could meet with him there - though we were thinking of getting the surgery done in the summer!  That is only 6 months away and so my mind is racing on how to fit all this stuff in!

We are not really considering finances at this point, assuming that insurance will cover the procedure and a "local" hospital will dramatically reduce other costs.  We can always have a fundraiser if need be!

Emma seems blissfully unaware of the mental strain this puts me under - and I am glad about that.  I don't want her to ever feel like she is a burden or inconvenience.  We'll try and work out all the details for her.  

One thing is clear, that she wants it.  When she saw the video she said she wanted a smile like that.  She told my parents that she really doesn't like her smile because it looks like a frown.  this is great - I know many other kids don't talk to their parents about it and I think probably feel worse than we realize.

Just today, one of the young women with Moebius who is working hard to promote Moebius Awareness Day on Friday wrote this in a Facebook post: "I heard this guy go "there's that weird girl" while looking at me."  I don't think she has had the surgery because people who have seem to use photos of them smiling.

While I remember being teased at school and feeling very insecure and vulnerable, it was passing.  This is a lifelong thing.

Please keep praying that we make the right decisions, for God's will.  We will take it one step at a time.

The aftermath

No more steps!!!

At least 11".  Officially the most big snow storms (6"+) this early in winter, ever [recorded]!!

Epic day!

Today was our scheduled consultation with Emma's plastic surgeon - so of course the forecast called for 6-12" of snow!  Schools were closed, but the hospital was open and we confirmed we were still coming.  About 10am they called and asked us to come in as early as possible to avoid the worst of the snow, which started about 9:30am.

As I pulled out of the driveway there was a light covering of fluffy snow.  The roads to the highway were pretty clear, but the highway was a little thicker and traffic was moving slow.  I had to pick up Scott from work, and head downtown.

The roads were horrible, and the windshield wipers kept accumulating ice, but we made it there about 11:45am.  Our appointment was scheduled for 1:30pm, but we went right in!

Emma was very good, waiting patiently for the doctor...

 

I asked her how she felt about being there (having explained the night before we were "just going to see if they can help her get the smile she wants").  She was excited and explained that she wants her smile to look like everyone else.  I told her that might not be possible, but at least it might go up instead of down.

A few weeks ago she was asking her friend if her smile was any different, better.  She clearly thinks about this more than we know, and we want to respect her decision.  It is hard for any kid to comprehend the implications of surgery, recovery and therapy - but then if someone told you they could help change something you "really don't like" about yourself, maybe there is limited downside.

The surgeon came in and referenced the emails we exchanged before.  There are two main options:

 "Smile Surgery" is traditionally the transplant of a nerve from the leg into a re-directed muscle that aids with jaw movement.  (there are two jaw muscles, so they can move one to connect to the mouth.)

This is a two part procedure - one on each side, 6+ hours each.  Success relies on the nerve growing in to the muscle and functioning.  One side may work differently.

The Labbe Technique, (as done in Norway a few months ago - remember that post?) moves the temporalis (temple) muscle on each side down, and moves the jaw muscle to the mouth.  It is a one-time procedure for 6+ hours, and will leave scars where "laughter lines" would usually be.  It also has an ear to ear scar over the top of the head (whereas the other method leaves scars by the jawline.)

You can view an interview with someone who had this done here:

http://video.uk.msn.com/watch/video/the-woman-who-cant-smile/2uxdvrpks

Emma seems very keen to go ahead, asking why they hadn't done it when we were leaving!  I could push the danger of surgery and potential pain after with her, but I am not actually concerned since she has always recovered well.  But don't get me wrong, the idea of any surgery scares me silly, even "routine" procedures carry huge risks.

If it was left up to me, I would not get it done.  I think she is beautiful and I see her smile clearly.  I don't want to risk her life for something so elective.  However, it is not just my decision, it's not my face.  And I can understand how this would become a big thing for her.  People with big noses, sticky-out ears etc all can suffer huge emotional stress and they are able to communicate non-verbally.

And so we pray, for wisdom, for guidance and direction. 

Meanwhile, on the way home...

 

Fancy cars aren't good in the snow!!

It took us 2 hours to get home, approximately 12 miles!!  The roads were snowy and every person was trying to get out of the city!  We were all hungry, having neglected to eat lunch amid the change of plans.  Scott had his lunch cooler, in which we found an apple (to be shared by me and the kids - primarily me since they both wolfed down a bag of popcorn before we left the parking lot) and celery, which Toby was hungry enough to try (until the apple came out!)

Who knows what tomorrow will bring, but we had to drive through 5 inches of snow to get on the driveway!!!

If you see a person with a disability or facial difference, please do not tell your children not to say anything.

This teaches them that we should ignore people who are different.  When a simple question and answer will help them understand they don't need to be afraid.

So, instead, say that yes, there is something different about that person, and that is OK!  If it's appropriate, ask the person or the parent about it.  I feel sure they prefer that, than staring and pretending they aren't there.

When kids have asked me about why Emma seems to be staring at them and I explain her eyes don't move or blink like theirs, they say "ok" and move on.  Otherwise they might dislike her because she seems to be rude or aggressive.

We see children (strangers) watching Emma, glaring at her because they can see a difference but maybe don't know what.  They may assume she has lower intelligence or is unhappy.  They avoid her and ignore her when she tries to play with them.

Oh, how I wish they'd just ask.

Check out one of Scott's old pictures.  You can tell which one is him - looks just like Toby!!

Quiet Day Off

Yesterday... 

Emma had to be at the hospital by 8am for an appointment with ENT.  This was a two month check in to see if she might need tubes re-placed.

Good news is her ears look great and the tubes are gone, so free and clear swimming!

As I broached the issue of possible sleep apnea the dr reluctantly told me her tonsils are enlarged, though likely as big as they will get. That could have something to do with her breathing, exacerbated by congestion at times.  She was hesitant to go through a sleep study if it is periodic, so I'm going to be on observation duty.  

(Note: this is now simmering in the back of my mind, constantly, with everything else!!)

Then it was back to the burbs and she was at school for 9:30.

Toby and I went grocery shopping, then back to pick Em up at 11:30.  We hit the store for a birthday gift, and then it was over to my friend Sabrina's.  I dropped Emma there for the afternoon, raced Toby to school for 12:30pm, then headed to the dentist.

I had my first two [tiny] cavities filled, which took about an hour.  I had just enough time to get home, switch the wet laundry to the dryer and put on a load for wash.  Then I went back to collect Toby at 3pm!

We went to Sabrina's, where we stayed for pizza and birthday cake as it was Evie's 5th birthday (hence the aforementioned gift!).

Back home at 5:30 to hand off the car to Scott (because his is in the shop!), who then went up to help with construction on a new building at church.  We got Emma's homework done and the kids got in the bath tub at 7pm.

And that was my day "off".

Just in case you were wondering what I do with all my free time!!

So Brave!

Update

So, "We usually think of less than 20 seconds as normal, but that is more for infants than larger people.  In adults, 30-45 seconds, or perhaps up to a minute, can be normal."

Who knew?!!

Anyway, picture me, watching Emma sleep tonight, timing her breathing, LOL!  I think we're within normal range.

You know how you when you get over one hurdle, you leave it behind you assuming it's done with and you'll never see it again?  But it really depends on whether you are running the 400m or 800m! 

A few years ago we left behind obstructive sleep apnea.  I think Emma was almost 3 when she was cleared of OSA, and by cleared I mean declared "borderline".  We said goodbye to the nursing staff that came to the house every night.  We put the CPAP machine at the back of the shelf in the closet, to be brought out one day in the future as a relic of forgotten time.

However, Scott and I have both maintained some concerns about Emma's breathing at night.  There are many instances of her in bed with us or when she first nods off at night and we are still laying with her (we each pray sing and cuddle with one of the kids most nights, until they fall asleep, or it becomes clear that they will not do so while we're there!), when her breathing is more like snoring and there are pauses. 

For example, she came in to us at some point last night and I let her in the bed.  I'm not sure how much sleep I got after that as I tried to ignore the snores and pauses.  I didn't do well at it.  I kept repositioning her, nudging her to breathe as I have many times before. 

With sadness I emailed her pulmonologist this morning.  I don't want to do a sleep study, but I can't ignore it any longer.  There's really no conclusive way to know, but that's the best.

I'll keep you posted!!

Bad weather

If you are checking the news reports on weather in the NE US you will know it's been crazy.  We had snow Thursday night, cold temps the next couple of days, around 19f, with freezing rain on Saturday night.  (32 fahrenheit is 0 celsius!)

This morning I checked the weather on my phone and it is 61f at 7am!!  Tomorrow we go back down to 16f, with wind chills lower than -10f.  And we aren't even getting the worst of it.  Further north and west is far worse. 

I am so thankful that we have central air to keep our house warm (even if the dry heat is making  Benjamin's fur static!!). 

Instead of worrying about us, please pray for the thousands of homeless people who have no place to go at this time.  Many will likely die.

We are so blessed, and even though you and I work hard for all we have, it is not without a measure of God's grace that we are able to sustain our lives.