Friday, April 29, 2016

Birthday shenanigans

It seems the older I get the more I want to celebrate my birthday, but other people seem to care less, unless it's a big number (and I still have a while until 40!)

So this year I invited my friends to join me for a painting class - I get to do one of my favorite things with people I love, and they get to try something new and call it a birthday gift!!

And that's what we did!

Ten women with high hopes and low expectations!!




And a new piece of art for my wall!!

And now that Scott's almost fully recovered from flu, I think we'll have more fun this weekend!  Stay tuned!

Sunday, April 24, 2016

Facts of Life

If you wonder how to teach your children about real world finances, Monopoly is a good place to start!!

Emma is getting schooled on income tax, and having to hand over money she just got!!

Be baptized!

Today was an epic day for our family.  After over a year of discussion, Emma was ready and wanted to get baptized.  She even drew Pastor Bob a picture and wrote "I would like to be baptized.  Can we talk about it please?"!!

In case you're wondering, we didn't baptize our kids as infants, as we believe baptism is choice, a response to repentance.

The Bible talks about both water immersion baptism in which a believer makes a public confession of their faith. Jesus lead the way in example of water baptism. Rather than an afterthought, baptism is a declaration of death to self, and new, eternal, life through Jesus Christ.

Whoever believes and is baptized will be saved, but whoever does not believe will be condemned. Mark 16:16

"and this water symbolizes baptism that now saves you also—not the removal of dirt from the body but the pledge of a clear conscience toward God." 1 Peter 3:21

Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit. Acts 2:38

And today was the day!

First Emma gave testimony of why she wants to be baptized.




Then she made the public declaration that she has "died" to herself, and is raised again in new life through Jesus Christ, a life that is eternal.


I realize that there will be many things in life that I am proud of Emma for (and Toby too!) but this has to rank among the top.  Since I believe that Jesus is the only way, the truth, and the life, for my children to also believe, and follow after Him is my dream come true.  To know that they will be with me in Heaven some day.

“Come now, and let us reason together,”
Says the Lord,
“Though your sins are like scarlet,
They shall be as white as snow;
Though they are red like crimson,
They shall be as wool.
Isaiah 1: 16-18

“What are you waiting for? Get up and be baptized. Have your sins washed away by calling on the name of the Lord.’”
Acts 22:16 NLT

Saturday, April 23, 2016

11 years ago today this happened!  Best day ever (until the wedding!)

Thursday, April 21, 2016

Today I took this picture of Emma helping Toby with his homework, instead of me doing it!

Then later I found this one!

How cute!!

Wednesday, April 20, 2016

Lifelong pursuit

My friend got some disturbing news this week, her dad was diagnosed with prostate cancer.  I have another friend battling breast cancer, and regularly hear stories of more struggles, fights and pain.  I can't help but use these times as strong reminders that life is precious, fleeting and a gift.

There is a strong temptation to live defensively. We want to prolong, protect and preserve our life, keeping things calm and stable, assuming that is what "peace" means.

But that is based on the assumption that life is something that happens around you, to you, or for you.
The truth is that life is what happens inside you!

All the red velvet ropes, glass cases and "keep away" signs don't bring peace. 

When a pool does not receive new water, or let water out (as in a stream or river), it dies. Sure, there is water, but there's no life. As it is with us - having a life that is devoid of highs and lows, through playing it safe, leads to stagnation. 

It is when we leap in faith, persevere in trial, have joy despite adversity and find peace in the storms that threaten to destroy us, that we grow, become fruitful and truly live.

When we reach a point in our life, maybe we have the marriage, kids and house, or we get the doctorate, promotion or grant, we think we've reached the pinnacle. We spend the rest of our days seeking to hang on to that, because we lack the faith and imagination to believe that there might be a greater purpose.

Jesus was very clear on this. "If you cling to your life, you will lose it, and if you let your life go, you will save it." (Luke 17:33) You see, our bodies WILL die, our stuff will decay and our achievements will be left behind. 

Even worse than missing out on this life, if we cling to those things and fail to seek the life that God has for us, we will likely die and spend eternity separated from him. However, if you let go of trying to control your life (and give God that authority) you will find life, abundantly and eternal.

To those who use well what they are given, even more will be given, and they will have an abundance. But from those who do nothing, even what little they have will be taken away. Now throw this useless servant into outer darkness, where there will be weeping and gnashing of teeth.’ (Matthew 25: 29-30)

We have all been offered the gift of eternity through Jesus. Will you accept it? What will you do with it?

Tuesday, April 19, 2016

If you happen to read the Daily Mail (UK) you might read this article:
http://www.dailymail.co.uk/news/article-3547365/Boy-6-smiles-time-life-changing-surgery-fix-rare-condition-paralyzed-facial-nerves.html

The little boy Maddox, had the same procedure Emma is scheduled for in May.  His mum and I have been chatting about things.

Our hesitation right now is that the smile is very subtle, and we were hoping for more.  That's not to say Emma wouldn't have a better result - she seems to have far more movement than Maddox did prior to surgery, plus his mum has shown me much better pictures.

You can see more on the TV episodes he was in here:

http://www.thedoctorstv.com/articles/3004-help-for-boy-who-can-t-smile


It's not a cut-and-dry medical procedure, where you fix something - they are creating something from nothing, results vary person to person, surgeon to surgeon.  We are proceeding with preparations for the scheduled procedure, while seeking peace from God that this is the right call.  


Thursday, April 14, 2016

I know, I've been slacking on the posts lately.  Truth is, I've got a ton on my mind, as well as our calendar!!

I recently heard some young adults lamenting that "adulting is so hard!"  Well,  they should wait until they try parenting!!

We could really use God's guidance and wisdom right now, as we question our choice of procedure and surgeon for Emma.

There's no clear answer in many of life's decisions, and so we rely, in faith, on God's leading, protection and blessing for the choices we make with the best judgement we have.  

And THAT is hard, when it comes to your children.  Decisions that will acutely impact their quality of life can not be anymore stressful.

So, if you feel inclined, please pray with us for clarity, if not neon flashing signs!

Thanks in advance.

Saturday, April 9, 2016

Spring showers

Not quite what you expect for april!!



Friday, April 1, 2016

Ice dream

It may be spring but we finally made it ice-skating!  Emma's school had a fundraiser at our local rink, so we went along.

At first it was just me and the two kids.  Toby had been before so he was a little braver, but mostly I skated with Emma, holding the frame from behind her and skating fastish while she tried to stay up!

Then Daddy arrived!


No one fell over, and I bribed the kids with an ice-cream to get them to leave after an hour!

Wednesday, March 30, 2016

Smile Bright

As I alluded to in a previous post, we have been re-considering the "smile surgery" options for Emma.  It may seem like a "no-brainer" in the way that if you had a child who could not hear, you would likely get them cochlear implant, or if they had a missing limb you would get a prosthetic.  However, there is simply far more to consider when altering the face. 

Our faces are very much linked with our identity, and are judged possibly more than anything else about us.  Aside from beauty considerations (which are not really on the table, as beauty is completely subjective and is more easily manipulated with non-surgical tools), the expression and first impression that we give in person is usually related to our face, and even more so, our ability to offer a friendly smile. 

That said, we have increasingly felt that Emma has been truly blessed with a large amount of facial expression, compared to others with Moebius Syndrome, and a personality that quickly compensates with expressivity!  We are hesitant to do anything that could potentially leave her at a greater disadvantage.

Since we first began to pursue (and subsequently paused) the surgical option I have been doing as much research as possible, speaking with individuals with Moebius, other mothers of children who have had the surgery etc.  While we decided about 20 months ago to suspend the surgical route to pursue therapeutic treatment, which has had some significant results but not as much as we had hoped, we think it is unlikely that therapy will achieve as significant an impact as surgery.

When we were at a routine appointment with the cranio-facial team in February, her surgeon made a very truthful observation, that while we should consider her own wishes, Emma is too young to fully understand the implications of either choice, nor can she anticipate what social issues are likely to arise in the next few years as she reaches adolescence.  So, as her parents, and as parents do frequently, we need to make a decision that we feel will be best for her.

At that time she was still saying she didn't need the surgery because her friends like her smile.  When I asked her what she wanted, she said she wanted to smile.  We would not feel the need to look at surgery again, were it not for Emma's own desire to smile "so that people can see when [she's] happy."

So we met with the surgeon again last week, to specifically discuss the procedure known as the temporalis tendon transfer. 

If you place your fingers on your temples and clench your teeth together, you can feel the muscle contract.  It is one of two, the other being the masseter that runs from your cheekbone down the cheek to under the jaw, that are chewing muscles.

The procedure relocates the temporalis to connect it to the corners of the mouth, where you and I have a crease from the nose to our lips.  When the jaw is clenched, the muscle activates producing a smile.  This picture shows an example of the procedure on someone with only one side paralysed.

With exercises and therapy, the smiling action will become more automatic and may even achieve spontaneity. 

This video shows a friend of ours who had the procedure when she was 16.  At about 1:39 she demonstrates.



It's still not an easy decision to make.  All surgeries have potential risks, and this is particularly sensitive as it involves our baby girl's beautiful face.  Unfortunately the Bible does not specifically reference such procedures, but we have been praying and seeking wisdom and discernment.  We believe that God's will is most often not specific to choices we make, but why and how we make them and are prayerful that in this case, we are following His will.  If however, God should be opposed to the surgery, we have asked Him to make that abundantly clear.

We were offered two options for scheduling, based on our desire to have the surgery while school is out for the summer.  The first is May 23rd, exactly two months after our appointment last week, and exactly the amount of time needed for pre-op exercises, or a date in August that was not at all suitable because all the follow-up and healing would be after school starts.

We accepted the May 23rd date, also 3 days after our 10th wedding anniversary, and are preparing ourselves for that.  Emma is excited, and while I am being honest about the process and recovery, I do not want to scare her, so am being a little vague on some of the details.  I figure that's best?!

So, please pray with us about this situation, and for the best possible outcome for Emma.  She truly is a light in our world and I can only imagine how much brighter she will feel and shine when she is smiling on the outside as she does in her heart.

Sunday, March 27, 2016

Many people celebrate Christmas without considering the significance of Christ's birth.

Christ Jesus came into the world to save sinners--of whom I am the worst. (1 Timothy 1:15)

Many people celebrate Easter without considering the significance of Christ's resurrection.

“Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?”” (John 11:25-26)

Many people baptize their children without considering the significance of believing.

Whoever believes and is baptized will be saved, but whoever does not believe will be condemned.  (Mark 16:16)

Many people believe that Jesus was the Son of God without considering the significance of following him.

Jesus said to his disciples, "Whoever wants to be my disciple must deny themselves and take up their cross and follow me. (Matthew 16:24)

Many people understand the struggle of denying themselves without considering the significance of hope.

“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God.”
Romans 5:1-2 NIV

Many people hope in eternal life in heaven without considering the significance of living in freedom and peace now.

So if the Son sets you free, you will be free indeed. (John 8:36)

Many people are still living in chains without considering they are free from the power of sin and death.  

If you declare with your mouth, "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved. (Romans 10:9)

Wherever you are in life, Jesus Christ died for your sin.  Just like he died for my sin.  So our "death" would not be the end.  So our life would be lived for him, with him and in him.

Happy Easter!


Thursday, March 24, 2016

Almost over!

What a week!

When Emma came down with a fever we assumed it was the same thing as I had a week prior, and Toby a week before that.  It would last a couple of days and be gone.  

Sure enough, on Monday she was resting and hydrated and the fever was gone.

On Tuesday we had a midday appointment at the hospital to discuss facial reanimation surgery.  On the drive home Emma went downhill and by the time we got home, she was totally out of sorts.  At 5 am on Wednesday morning, her 102f fever was up to 103f and not budging much with medicine.

So on Wednesday morning (after getting the "no appointments") from our doctors office we headed to urgent care.  It's like a cross between a doctors office and the ER!  Anyone can go in there without an appointment and they have much longer hours and more facilities than regular offices.

Anyway, hearing the symptoms the nurse slowly backed away and said "I think it's the flu"!  Sure enough, the swab tested positive.  So Emma was put on Tamiflu, the only flu medicine, and an antibiotic, to prevent pneumonia developing.

As of today, the fever is persistent, but she is eating again and moving around more.  I knew it was bad when she didn't want to eat at all yesterday and slept for 14 hours Tuesday night!  She didn't even want the iPad.

So, we are riding it out, and she's considered not contagious as of Friday, but I'll keep her home until Saturday, maybe Sunday.

It's both good and bad that this week is Spring Break, so she's not missing school.  But the weather is nice and she could be outside (though I think she's happier "resting" than anything!)  

As for me, I worked from home on Monday, and had Tuesday off for the appointment.  When this hit my boss said I could work from home the rest of the week.  I could not be any more thankful for the way my managers allow me to balance my family with work.  A happier employee is a productive employee!!

Monday, March 21, 2016

The Lazarus Incident

The problem with Easter, I would assume, for most people, is the idea of someone coming back from the dead.  It's a very difficult concept for those of us who have seen death as the final threshold for so many others.

But I believe God knew that we would struggle to believe.  I believe Jesus knew that even his disciples would struggle to believe a resurrection, a self-resurrection at that!  And as God so often does, He did not ask the disciples to belief the unbelievable.

In the Old Testament both Elijah and Elisha raised an individual from the dead, but the disciples wee not eyewitnesses.  There are three occasions in the New Testament, to which the disciples were witnesses of Jesus resurrecting the dead.

Jesus raised the son of the widow of Nain from the dead (Luke 7:11-15) and Jesus raised the daughter of Jairus from the dead (Luke 8:41, 42, 49-55).

And then comes the Lazarus Incident.  This was unlike the other resurrections.  This was hugely public, it came after Jesus had done many other miracles and had quite the following.  This was a resurrection after decomposition had begun.

This resurrection was the spark that ignited the fuse leading to the crucifixion of Christ!

“Now a man named Lazarus was sick. He was from Bethany, the village of Mary and her sister Martha. (This Mary, whose brother Lazarus now lay sick, was the same one who poured perfume on the Lord and wiped his feet with her hair.) So the sisters sent word to Jesus, “Lord, the one you love is sick.”

When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”

Now Jesus loved Martha and her sister and Lazarus. So when he heard that Lazarus was sick, he stayed where he was two more days, and then he said to his disciples, “Let us go back to Judea.” “But Rabbi,” they said, “a short while ago the Jews there tried to stone you, and yet you are going back?” Jesus answered, “Are there not twelve hours of daylight? Anyone who walks in the daytime will not stumble, for they see by this world’s light. It is when a person walks at night that they stumble, for they have no light.”

After he had said this, he went on to tell them, “Our friend Lazarus has fallen asleep; but I am going there to wake him up.” His disciples replied, “Lord, if he sleeps, he will get better.” Jesus had been speaking of his death, but his disciples thought he meant natural sleep. So then he told them plainly, “Lazarus is dead, and for your sake I am glad I was not there, so that you may believe. But let us go to him.” Then Thomas (also known as Didymus ) said to the rest of the disciples, “Let us also go, that we may die with him.” (Later to be known as "Doubting Thomas", here we see such strong faith from Thomas, that he is prepared to go to the death with Jesus.)

On his arrival, Jesus found that Lazarus had already been in the tomb for four days. Now Bethany was less than two miles from Jerusalem, and many Jews had come to Martha and Mary to comfort them in the loss of their brother. When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.

"Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. But I know that even now God will give you whatever you ask.” Jesus said to her, “Your brother will rise again.” Martha answered, “I know he will rise again in the resurrection at the last day.”

Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?” “Yes, Lord,” she replied, “I believe that you are the Messiah, the Son of God, who is to come into the world.”

After she had said this, she went back and called her sister Mary aside. “The Teacher is here,” she said, “and is asking for you.” When Mary heard this, she got up quickly and went to him.

Now Jesus had not yet entered the village, but was still at the place where Martha had met him. When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.

When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.” When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. “Where have you laid him?” he asked. “Come and see, Lord,” they replied.

Jesus wept. Then the Jews said, “See how he loved him!” But some of them said, “Could not he who opened the eyes of the blind man have kept this man from dying?”

Jesus, once more deeply moved, came to the tomb. It was a cave with a stone laid across the entrance. “Take away the stone,” he said. “But, Lord,” said Martha, the sister of the dead man, “by this time there is a bad odor, for he has been there four days.” Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”

So they took away the stone. Then Jesus looked up and said, “Father, I thank you that you have heard me. I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me.”

When he had said this, Jesus called in a loud voice, “Lazarus, come out!” The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face. Jesus said to them, “Take off the grave clothes and let him go.”

Therefore many of the Jews who had come to visit Mary, and had seen what Jesus did, believed in him. But some of them went to the Pharisees and told them what Jesus had done.

Then the chief priests and the Pharisees called a meeting of the Sanhedrin. “What are we accomplishing?” they asked. “Here is this man performing many signs. If we let him go on like this, everyone will believe in him, and then the Romans will come and take away both our temple and our nation.”

Then one of them, named Caiaphas, who was high priest that year, spoke up, “You know nothing at all! You do not realize that it is better for you that one man die for the people than that the whole nation perish.” He did not say this on his own, but as high priest that year he prophesied that Jesus would die for the Jewish nation, and not only for that nation but also for the scattered children of God, to bring them together and make them one.

So from that day on they plotted to take his life.”
John 11:1-53 NIV

After witnessing such a dramatic resurrection, and one of a friend of Jesus and the disciples, how could any of them doubt the power of Jesus, over death.

And perhaps this demonstration of God's power and glory was not just for the disciples.  Perhaps this is a call from God for you to believe that as Jesus raised others from the dead, that He also overcame death himself.

And if Jesus could resurrect himself from the dead, He has the power to overcome death for each one of us.  Death is not the end of us, it is junction.  We are all headed on a highway to hell, due to our disobedience to God, but there are numerous opportunities for us to take an exit, get off the highway and take the narrow road, that leads to life, through the gift of salvation through Christ.

I know I've seen many things in my life and the world around me that make it possible for me to believe that there is a God, creator of the Universe, and that He has the compassion and power to send His Son to die for us.  It is hard to accept, knowing how little I deserve that mercy, but as a parent I am learning to see that so often love overcomes.

Salvation is not complicated.  If you declare with your mouth, "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved. (Romans 10:9)  It's a choice, a decision.

Thursday, March 17, 2016

Gym-tastic!

Emma is really showing great improvement in gymnastics.  She had a one on one session with her coach this week, and it really helped her practice.



This was the first day she could land on her feet on the vault!  And she did it over and over.



I realized I've held on to some doubt that she'd get very far with gymnastics, but I'm seeing that if she works hard, there's no reason why she couldn't get better.  I'm thankful we are able to give her the opportunity.

Sunday, March 13, 2016

Sixers

On Friday night we joined a group from our church at the Philadelphia 76ers basketball game, which was followed by a concert by a Christian band, Seventh Time Down.

Neither the kids nor I have ever been to a basketball game, pro or amateur!!  It was fun.  We started off high in the rafters, in the cheap seats, but a friend was down close to the court so Toby and I got to move down for part of the game!




Kali and Toby and I met the band on the way down!!

At first I thought Toby got the gesture wrong - but if you look close, he's holding his chewing gum in his finger!!

We made him retake it!!

We got the kids some souvenir shirts!
 
Everyone got to move closer for the concert.



Toby was in to it!!

So that's one week and two major sporting events!  We don't expect to be able to go to things like that very often, but it's fun to give the kids the experience.

Note: Emma was by far more interested in the actual games we were watching than Toby!!

Tuesday, March 8, 2016

Flying high

Last week Scott worked 68 hours.  He worked Saturday, though we met him downtown for lunch, and he worked Sunday, but came home for church!  It was a long week and a frustrating one and Friday was the toughest day.  I could tell from his texts!

All work and no play makes Scott frustrated.  He misses the kids, and me(really, he does!) and needs more rest.

And so it was, on the toughest days for the week that one of the contractors Scott over sees came to him with four tickets to tonight's ice hockey game!  The tickets were for seats in one of the box suites (rather than the nosebleed seats on the upper levels) and each ticket included $40 of concession money!  (You can't argue with the perfect timing of the tickets.  Such a blessing!)

Even though it was a Monday night, and the game didn't start until 7pm (the kids normal bedtime) we went!  Sometimes you just have to live life in the moment.  (I did make sure they went to bed early Sunday though!)

We had a blast and since we ate before we went, we used the money to buy souveneirs!






And the best part was the local team won, so there was lots of joy and very little swearing from the crowd!!




Thursday, March 3, 2016

Pinewood Champions!

Our church is put to incredible use!  A school during the week, and a race track once a year!!


Here are the cars (slot 19 and 9 above) once I'd finished the paint job...



Third place for each of them was great.  Emma just wanted to get her first trophy!!

Kudos to Josiah (and Pops) who got first place in this age bracket!

Josiah was super excited to have his dad there for the race!

Good times and fun for the kids.  We may need to build Toby a trophy shelf soon!

Wednesday, March 2, 2016

Finally!

Six days later and we got our cable service replaced yesterday.  That turned out to be the only thing damaged by the power surge, once Scott replaced the light switch in the kitchen and the blown bulbs.

We get TV, internet and phone all through the cable company, so we were relying on our mobile phones and the iPad for communication and entertainment.  Needless to say we burned through our usual 4GB of data and had to up it to 15GB, which we still used up.  Now we know how much we save by having wireless at home!

It was a huge pain because I could not use my laptop for work, so when Toby was home sick on Monday, I had to take a vacation day.  It was a blessing though, as I was able to focus on him all day and we had quite a nice day playing Wii, Lego and napping together!

When I get some time this week, I'll post pictures of the Pinewood Derby on Saturday!!  Both kids got 3rd place in their age brackets.