Moebius Syndrome Foundation Conference 2018

Despite Scott fracturing his vertebrae last Sunday, we still made it to St. Petersburg Florida for the bi-annual Moebius conference!

Excited for the flight!

The Vinoy is a 90 year old hotel and it was fantastic!  Beautiful, and the room was huge with comfy beds.

The view from our room

The marina across the street

 The pool

Dinner the first night!

Before the conference started we visited the Clearwater Marine Aquarium, the home of Winter, from A Dolphins Tale. 

Winter's tale fell off when she was a baby and had been caught in a crab trap.  Emma loves the movie, so it was a cool trip.

Touching baby Rays!

We stopped at Clearwater beach for lunch and a quick dip in the Gulf!

Time for the conference!

We all met Jono Lancaster, a motivational speaker with Treacher Collins syndrome.  Jono is from Leeds in the UK and was the keynote speaker at the conference.  He also became a friend of our family!!

When we could get Scott to rest, he did!

Toby was 4 at the last conference, so this was important for him.  He attended a few sessions, including a sibling group lead by some therapists.

We met lots of kids, many who knew Emma from their moms showing her picture on Facebook!

Jono gave a great opening speech, really impacted us.

Then the kids could play!

These two got along so great all week, and helped me whenever I asked.  We are so proud.

Toby enjoyed the free continental breakfasts, eating more croissants than I could count!!  We really gave them a break on the calorie watch this trip!

These teens have a strong friendship and I hope one day, Emma can find similar friends who know what she deals with!

 The group picture of kids!

Then Emma held Leland, the newest member of the family, only 5 weeks old, with Moebius Syndrome.

The pool DJ had a hula hoop contest!

Emma performed at the talent showin front of around 300 people!!

Last breakfast!

This picture is from Friday evening, when some of the moms from the Facebook group all went out for a drink.   I wasn't anticipating the conference having a big impact on me, but it did and I made so many new friends.  Many knew me and Emma from Facebook and we had a lot of positive comments about inspiring people.

Truth is, many of these women have children with severe medical issues, and they are warriors!  They show grace and love under pressure I couldn't stand, and for those with little kids, they now have a sisterhood!!

Live long and prosper

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

It's one of the most loved promises of the Bible.  Especially the word "prosper" which has been seized upon by many.  However so often we overlook the context of the promise:

"When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place. For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the Lord, "and will bring you back from captivity.  I will gather you from all the nations and places where I have banished you," declares the Lord, "and will bring you back to the place from which I carried you into exile." 

Jeremiah 29: 10-14

For the Israelites, the promise of restoration to peace and fruitfulness is given in the context of faithful endurance after 70 years of exile - struggle, and subjugation. 

Note also that the "plans" and "prospering" refer to being restored as God's nation WITH THE INTENTION that this would lead them to once again fully engage in relationship with God.  He directs them to seek him with all their heart, collectively, but also individually.  When they call on him, he will listen to them.  He will reveal himself when they seek earnestly for him.

Firstly, God allowed Israel to be taken into exile, to be subject to the pagan Babylonians.  Why?  Because they were not following God and He loved them too much to allow them to turn their back on him for good, which would lead them to destruction.  This temporary place of suffering was a tool that God employed in his mercy to redirect their path back to him.

Secondly, he had no intention of leaving them in that place, and rather than allow them to believe He would, he gave them a message to clue them in. 

Now, for word "prosper" which is often fixated on!  We need to realize that the treasures of God's Kingdom are not the same as the world's!  God has no need of gold or gems.  He owns it all.  The world is his footstool - real estate is a false reality, since he owns it all.

To prosper in God's Kingdom, the treasure in heaven, where moths and rust cannot destroy, and thieves do not break in and steal, is beyond the physical.  Jesus frequently references the fruit that believers will bear, when they stay connected to him.

When we are looking for financial prosperity, or career, possessions etc, we miss the very heart of God!  While, in his wisdom, he may grant us these things, we should seek God with all our heart as he alone is to be treasured!  Closeness with God is what we were created for, and is the ultimate reward.

We will prosper in the Kingdom when we receive love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control (Galatians 5:22-23).  And in turn we will often find prosperity in life when we display a character like that!

Safeguards

Do use your car headrest? Do you lean against as you drive, or do you find annoying, possibly something that messes up your hair? It's funny, how we can find something annoying when we don't understand its purpose, and maybe even remove it from our life without understanding what we've done.

Recently when I was in a fender bender, it was explained to me that in an accident, your head first whips back and then forward, and then back. Without the head rest in place, your neck bears the full 180° brunt of that impact.

In our lives, God has placed similar safeguards, that protect us from unexpected danger. But when we don't fully understand the purpose of his safeguards, we might reject them and even remove them from our lives putting ourselves and those around us at great risk.

So, even when the safeguards cramp your style, get in the way of your plans, maybe even mess up your hair, it's best to realize that God is infinitely wiser and more prepared for the future than we are.

Anger Issues

"In your anger do not sin" Ephesians 4:26 says.  It doesn't say to be angry is a sin, but cautions that unresolved anger can lead us into sin.  How?

 

Sometimes we get so hurt by someone that we don't forgive them, even though scripture says "But if you do not forgive, neither will your Father who is in heaven forgive your transgressions." Mark 11:26

 

Sometimes we are so beat down that we stop trusting, to protect ourselves, even though scripture says "So we may boldly say: 'The LORD is my helper; I will not fear. What can man do to me?" Hebrews 13:6 and "The LORD is good, a stronghold in the day of trouble; and He knows those who trust in Him." Nahum 1:7

 

At times our anger is so great, toward the person that wronged us, whether it's the driver in front, a parent, a friend, or a spouse, or even God himself, that we refuse to seek peace.  Even though scripture says "And "don't sin by letting anger control you." Don't let the sun go down while you are still angry," Ephesians 4:26

 

Often, we do whatever feels good to us, regardless of the consequences, even though scripture says "Don't you realize that your body is the temple of the Holy Spirit, who lives in you and was given to you by God? You do not belong to yourself," 1 Corinthians 6:19

 

We seek our own retribution even though scripture says "Do not take revenge, my dear friends, but leave room for God's wrath, for it is written: "It is mine to avenge; I will repay," says the Lord." Romans 12:19

 

Our world is full of anger.  We are bombarded with inflammatory new and commentary, polarizing our opinions and distracting us from what Jesus actually calls us to do. 

 

"Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these." Mark 12:30-31

 

Who is you neighbor?  The driver who just cut you off, your frustrating parent, that friend who was not there when you needed them, the spouse who isn't perfect.

 

"Jesus replied, "Anyone who loves me will obey my teaching. My Father will love them, and we will come to them and make our home with them." John 14:23

Little Dancer

It's recital day, 9 months in the making!!

Emma won't be alone in this one - the opening number is a dance with daddy!...


Then was her big number that she worked all year for!


So proud of all the effort and commitment she puts in to new endeavors.

This week she was elected to the Student Leadership for next year, her final year in "grade school".  And accepted to the community service club.  She wants to try Hip-Hop next year, and still do gymnastics!  I'm exhausted already!

Father's Day

Father's Day is approaching, and it got me thinking.

We tend to view God through a filter of the significant relationships in our life, especially our parents or spouses.  We project their intentions and personalities on to Him.  But while parents especially, should be a pointer to the Father we have in Heaven, we always fall short.  We have our own sin and brokenness!  In light of this consistent imperfection, we must apply scriptural truth on who God is.

For anyone who's dad was absent, angry, apathetic, abusive, addicted, narcissistic, or any other thing that leaves you questioning the purpose or significance of a father, the truth is that you have a heavenly father, that is none of these things.

God, the father, is always present, always watching, always supporting and encouraging. He loves, disciplines, encourages, and guides his children. He listens attentively, rejoices enthusiastically, empathizes greatly.  When we grieve, he mourns with us. When we hide from him, he pursues us. When we reject him, he embraces us.

His love is not conditional, based on our performance, or even our love!  He loves us completely because He IS love!

He has no need of us, yet he adopts all who call on his name, into his family with complete celebration and participation in his riches.

His love is so good and pure, that his Son willingly sacrificed his life, so that we could also know and experience that love and relationship with the Father.

If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
Matthew 7:11

This Father's Day, don't forget to connect with your Father in Heaven!

Picture Day

These two are growing up way to fast!! 

The baptism

There were 7 kids baptized in the service on Sunday.  All of them took classes to make sure that they truly understood what baptism is and why they would do it.

Baptism and ballet

A special, busy day!!

First Toby declared his faith and walk with Jesus in immersion baptism.

 

Followed by a lunch with our friends!

 

 

Then Emma had to put on her full costume for pre-recital photos.  How quickly it feels like she has gone from pretending to be a ballerina to a young lady!!

 

We topped it off by escaping to the movies with our friends for the third Avengers movie, our annual double date!!
 

I need a weekend now!

Precious One!

This is one of my wallpaper pictures at work, and every time it comes on my heart melts!  That tiny little face, the full head of hair and the total eye contact.  It is a great reminder to me that though my babies are now over 4ft tall, and run circles around me, they are still looking at me with the hope and unconditional love that Emma did then.

When I told her this morning that she is my favorite girl in the whole world, she said "I am? I didn't know that!" with apparent sincerity.  Even though I have told her that many times, in many ways!!

Our children's hearts are fragile, and as adults, we too can need constant reassurance that we are loved, we are preferred, we are valued.  But in our world, we often only listen to the negative, the past wounds, or the deafening silence of those we crave approval from. 

That's why we are called to return to the scriptures daily.  To spend time in our Father's presence.  To listen to the sweet whisper of the Holy Spirit to our heart.

Psalm 139:13-16 ESV

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

 

Romans 5:8 ESV

But God shows his love for us in that while we were still sinners, Christ died for us.

 

You, and I, were deliberately created.  Designed, in love, for great things.  God, who knows all things and is not bound by time, gave life to you.  He did not change his mind when he knew you would reject him and live for yourself - rather he sent his Son to atone for your choices, in provision and hope that you would some day turn and acknowledge him.

He longs for us to turn our face toward him, with wide eyes and ask him who he says we are!  To allow our true purpose, and true value to come from him, not the self-willed vision we have of ourselves.

His love is unending, unfailing and inescapable.  He pursues us all, through our fears, rebellion, and sin.  To one end - reconciliation. 

Birthday Musings

365 days until my 40th birthday.  Hardly seems possible!  I have never lost the feeling that I am a teenager pretending to be an adult, and will one day be exposed as a fraud!!  But I guess at this point I'm an adult be default.  It's been quite an exciting journey, and there has been a rollercoaster of highs and lows.

Birthdays are a great time to pause and reflect.  And when I do that, it fills my heart to see God's providence and sovereignty over my life.  How did I end up in Philadelphia?!  How did I meet and attract such an amazing man to share my life?  How could I have such wonderful children who have blessed me so much?

People often answer these questions with things like "you're a good person" or "you're so lucky", but should that happen I would have to counter that the only act of my part in this was obedience and surrender!!  Even before I had a personal relationship with God, I can now see he was orchestrating my path.  And when I did enter into that faith relationship, acknowledging my complete failure to measure up to any of God's standards, I did so with a heart of surrender.

I gave up pursuing the things that we all anticipate we should have - the well-paid career, a significant other, hedonistic fun at every turn.  I was lost, and all my efforts to those ends had really left me feeling inadequate and powerless.  So I turned my life towards God, and pursued Him!  

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.

Matthew 6:33

That is obedience.  To seek God, and let go of what you think you need or deserve.  There is such rest in that, because God is able to be found!

You will seek me and find me when you seek me with all your heart.

Jeremiah 29:13

And only after I made that change in my direction did I find the purpose, peace, and pathway that I live in now.  

So, as I look ahead, I know only one thing, and that is I must continue to pursue my closeness with God, and his reign over my life.  And no matter what circumstances prevail, or how short the future is, when I am pursuing God, I have refuge in the shadow of his wings.

Be gracious to me, O God, be gracious to me, For my soul takes refuge in You; And in the shadow of Your wings I will take refuge Until destruction passes by.

Psalm 57:1

And into eternity we enter, rewarded with a place in the Kingdom of Heaven forever.  That is the hope to which we are called.

Baptism Sunday

As Toby get's ready to take the plunge next weekend, I thought it would be fun to revisit Emma's special day!

Catch up

Yet another season has flown by, and it's finally Spring - although you would not believe it to look outside.  It's still thoroughly chilly, and even had a sprinkle of snowflakes a few days ago.  And yet we live in hope, of the promise that it will warm up soon.

The winter here was brutal.  More snow than in recent memory, causing days off school and trees falling (mercifully none of ours).  So, even more than usual we beckon the summer to arrive, when it will be "too hot" and the cycle continues!

We celebrated Easter this year with a visit to the UK.  The kids got their first taste of a British Easter, literally, with a dozen giant chocolate eggs, and accompanying chocolate bars, which I am slowly portioning out!  (I usually throw out much of the holiday candy they get, but this is English chocolate, and that would hurt me even more than having to resist eating it!)

It is always bittersweet to visit our other family, in the UK.  We quickly assimilate and adjust to the people and pace of life.  Only to leave again.  It is quite head spinning.  As the kids get older, and "family" becomes more precious, these visits are increasingly a priority.

It has been such a blessing for the kids to get to know two of their great grandparents.  To see your children as excited and running in to their arms as you once did is a priceless experience.

And as quick as we arrived, we were home again, and looking ahead.

Baseball season has started, and Scott is coaching one of Toby's two teams!!

(This was Saturday when it was 80f.  The next day dropped back to 40f!!)

The kids have two months of school left, and then it will be summer.  Every year summer presents a challenge for me.  It's a benchmark of how quickly the kids are growing up - Emma has 8 summers left and then she'll be looking at starting college!!  So while I work, I long to make the most of this time when we can create memories.  Every year so far I've fallen short.  So I'm being proactive and making plans this year!!!

At the end of August Scott will be heading off to the Amazon basin in Peru, leading a mission team from our church.  The trip will have them doing a few things, including taking a boat 12hours into the jungle, where they will construct a church for the indigenous tribes people that the local missionaries connect with.  Not just bringing the gospel to the people, but also water filtration and other positive things!  (You'll hear more about that, and have an opportunity to help send Scott!)

And so it's back to today.  Living in the moment, planning for the future, hopeful in eternity!!

At times we can become so consumed by the sheer weight of all that lies ahead, compounded my regrets or memories of the past, that we forget that God is very present hear and now.  He wants our attention, and obedience, in faith that He holds the future in His hands, and our past has been washed clean.

That reminds me - Toby has asked to be baptized!  This is a big deal.  If you recall, we don't practice infant baptism, following the scripture that baptism is an outward declaration of an inner change.  Once a person is mature enough to understand that they have sinned against God (as all have, Romans 3:23), and that only through Jesus Christ can sin be forgiven (Romans 10:9, John 14:6), and make a decision to turn from living for themselves, and invite God, through the Holy Spirit to be the leader of their life, then they are saved.  Then baptism is an act of sharing that decision.

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

Mark 16:16

When I asked Toby why he wanted to be baptized, he shared that he knew he had done wrong things and wanted to be made clean and pure.  We prayed together for God to forgive him, and Toby asked God to lead his life. 

It is probably the greatest joy that a mother can have.  I couldn't make that decision for him, and I can not force him to make that same choice each day (because it is a daily choice for each of us, if we will deny ourselves and follow God, or do what we want!).  We will always try to lead our lives in faith, showing our children (and anyone else who is watching!) that we require God's strength to live right, and we require God's mercy when we fail!  

Time is flying by.  We need to be prepared!

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Left Out

You know that feeling, of being left out? We all get it, whether it's personal, like at work, with family or friends.  Or it might be general, like feeling left out of a demographic - maybe a stay at home mom, or no longer considered "young"!

I was thinking about this the other day.  From childhood, and still in adulthood, this feeling creeps in, and can cause discontent and even jealousy.  So, I asked God about it, and he brought the disciples to mind.

Jesus had 12 disciples.  These were the chosen few, from the numerous followers that had put their faith in him as the Messiah.  These 12 were with him even when he wanted to escape the crowds.  They were close.  So I wonder how the other 9 guys felt when, as Matthew records in chapter 17 of his gospel, "Jesus took with him Peter, James and John the brother of James, and led them up a high mountain by themselves."

Then, in the evening of his arrest, when they all went to the Garden of Gethsemane (Matthew 26:36) "  Then Jesus went with his disciples to a place called Gethsemane, and he said to them, "Sit here while I go over there and pray." ³⁷ He took Peter and the two sons of Zebedee along with him"

Again, Jesus took the 3 with him.  There is no account of any grumbling among the others.  They don't complain to Jesus about being excluded from this trip.  The others don't abandon their commitment.

So, if the disciples, who presumably had a great desire to be close to Jesus, were able to set aside their own position and not descend into resentment, how can we?

I believe the answer lies in who they sought validation from.  They were not looking at each other (or at least not constantly), comparing the position of the other disciples.  They felt validated as individuals because Jesus had let them know that he loved them.  He loved them despite their sin and weaknesses.  And in that brings the freedom.

When we are focused on receiving validation from those around us, we are subject to the behaviors and choices of others.  Yet, when we are secure in our position as a beloved child of God, we should take peace in that. 

Yes, situations may occur where we are tempted to feel left out, bringing hurt, anger and resentment.  However, we can, and should seek to resist that temptation and go to God for the reassurance that we need.  He has promised to never leave us, or forsake us, and has also promised that we will share in the inheritance of Christ, as if adopted brothers and sisters.  We will not be left out.

For the disciples, the chosen few were given greater responsibility.  Jesus needed a core team to lead the church after his return to Heaven.  He couldn't explicitly explain this to the group, they simply had to trust him, and be thankful that they were among his followers.