Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day

Tomorrow, January 24, is Moebius Syndrome Awareness Day. 

We ask people to wear purple to show support and help raise awareness for this rare condition that directly impacts the lives of those who have it. 

In particular, we want people to post pictures of themselves in purple on social media, especially Facebook, and include the tags

#MSAD

#MoebiusSyndromeAwarenessDay

This is a great way to remind the world that we need to look beyond the appearance of others, to see their heart - the smile they wear on the inside. 

It's also more than Moebius Syndrome - people everywhere are affected by facial disfigurement and other disabilities.  We want to remind people to be kind! 

If you wear purple and post your picture, please tag me in the post - Emma loves to see who is directly supporting her!!

This was such an inspiring message, and I just had to share it!!

Merry Christmas and Happy New Year

Is it seriously 6 weeks since my last post?!  Ugh, how frustrating.

Truth be known, I've been so busy that I haven't even thought of it.  We've had so much fun and done so much I can't keep up.  Let's see...

We had Emma's birthday party, and took a bunch of kids to see Wonder, which was as good a movie as I've seen in a long time and totally melted our hearts.  That was the night after Scott's work holiday party - bowling and pool with the company!

Then my parents arrived for a weeks visit - day trips, Legos, games, and shopping!  We also had Thanksgiving dinner with all of Scott's family over, which was a classic family Thanksgiving!

Then it was December.  The race was on.  We had church performances, Christmas shopping, snow, dinners and parties.  I made it through everything prior to Christmas itself, before I got sick.  This time of year is rampant with viruses and colds.  I hit a wall a few days before Christmas weekend and took an entire day in bed to recover enough to get back to things.

 
Christmas was really wonderful.  We had the day at home, just the four of us, building Lego and playing games, after all the gifts were opened up.  This year the gifts from Scott and I were joint between the kids.  It wasn't really a conscious decision but it was a blessing to see them unwrap together and not fight.

And here we are, on the eve of New Years Eve already.  Where did the year go?!  Here are a few of the highlights from our year:

·         Two great family visits

·         Redecorated all bedrooms

·         U.S. Citizenship

·         Choir Camp

·         Baseball Season

·         Scott preached

·         Better health, weight loss

·         Swim team

·         Emma riding a bike

·         Mexico Mission Trip

·         Zipline

·         Fashion Show

I hope to share some of the pictures with you soon!  But for now, let me wish you a peaceful and joyous New Year!

 

Birthday Card

After I made Toby a birthday card (because I'd been procrastinating and ran out of time) Emma asked me to make her one, with Maleficent on it.  Despite 5 weeks notice, I procrastinated again, and was doing this one last night!  Turned out ok though!

Funny thing - when I pointed out the "10" was Maelficent's magic she had to "correct" it and show the green mist emanating from the wand.  She is so my kid!!

Landmark times!

Babies - they are a bundle of joy!  This bundle was 6lbs of joy and fears, hope and tears!  Aren't they all?

The early days, weeks and months came with so many unanswered questions, and uncertain future.  But one thing is for sure, on that day, 10 years ago, the world was changed.  I was changed.  For the better.

The distant memories of that first year linger, but not with sadness.  Instead we look back with awe and wonder at the mighty strength of our God, a God who loves our baby girl more than we ever could.  He gave her courage, strength and heart.  He gave us peace, joy, and hope.

It is bittersweet to think our baby girl is now 10 years old, a tween if you will!  I look back at pictures and videos of that sweet little face and squeaky little voice and it brings tears to my eyes.  I want to go back, I want to redo the years, with the knowledge that we should worry less, play more and take time each day to give thanks.  I want to re-make the choices that held me back from living life, out of fear and anxiety.

But I can't, none of us can.  We can only choose to make today different, and tomorrow, if we are granted another day. And the day after that.  Each day is full of opportunity to choose love, life and hope, instead of worry, fear and regret.

Today is Emma Hope's birthday.  Today I want to put a flag on the day, a stake in the ground, build an altar to the Lord (ala Old Testament), and give thanks for all that she is, and all that God will do in her life.  Back in the early days, 10 years was way too long to even ponder on.  Today, I look ahead with hope, and excitement for what is yet to come.

As always, there’s more to this day than appears at first glance! Yes, it was a ton of fun and fulfilled a childhood dream of mine (one long abandoned!), but the backstory is so quite cool.

Today, Emma and I were in a fashion show at Bloomingdales, an upmarket US department store, benefiting Fred's Footsteps.

Before the show!

Em teaching Mary a new game!

Scoping the runway!

Make-up done!  (Hair by me!  I had it all chopped yesterday!)

Then the big show!

We had a plan to make everyone laugh!  Em handed me her back pack (like kids do) and took off the jacket before throwing it over her shoulder and strutting off!  Totally worked.

The Emcee was a local news anchor.  She asked Emma what the best part of modelling was and Emma said "Dressing up!"

 I was wearing a $315 Ted Baker dress, Emma was mainly in Ralph Lauren.  We did not buy the clothes!!  Though Fred's Footsteps gave us a Bloomingdales giftcard which was so nice.

So, how did we end up doing something as fun and crazy as this?

10 years ago (yep, it’s a long story) Emma was born with gastroschisis. This serious condition was diagnosed before she was born, and seemed “manageable” with surgery after birth.

However, her story was not to be so straightforward. Diagnosed with Moebius Syndrome, GERD reflux disease, and obstructive sleep apnea, her prognosis was uncertain at best. After 3+ months in intensive care she came home and I️ left my job for good.

Losing half your income unexpectedly is only less devastating when compared to the health struggles Emma faced! We didn’t know how to handle one let alone both. And we prayed, and were prayed for.
Shortly before leaving the hospital, our social worker told us about a new organization called Fred’s Footsteps. We could apply for their financial assistance, for 12 months. We were approved.

We can’t remember exactly how much money they contributed over the 12 months, but it was thousands of dollars. Mortgage payments, car insurance, electric bills etc.

We were able to focus on Emma, and adjusting to just one income.

We are forever grateful to the DiBona family and Fred’s Footsteps. They helped us with no expectations in return, and genuinely care about all they help. And we love being able to help them fundraise so that they can help more and more families in our area.

And We Know That For Those Who Love God All Things Work Together For Good, For Those Who Are Called According To His Purpose. – Romans 8:28

We should never underestimate the ways God will answer prayers, or how he will use our struggles to bring good for others.  We can not change the past, but we can take it and turn it around to bring glory to God!

Days Flying By

It's almost disturbing how quickly time passes!  Weeks are no longer defined by days, but activities!  Days are shorter too, with darkness falling around 6pm (soon to be 5pm).

Mondays are swimming and gymnastics, after homework.  Tuesdays Scott leads the men's group at church (which is having a major impact in the lives of the guys who go). Wednesdays is swimming again, and every other week I go to a bible study.  Thursdays are usually clear, but somehow seem to fill, or disappear all to quick.  Fridays are ballet and every other week Emma leads a bible study for girls at church.  Scott is starting to work more Saturdays as the building completion deadline approaches, great for our cash flow, not for family time!  Sundays are always church, and we strive to rest, but often take the opportunity to visit with friends.

And so the cycle repeats, week after week, with slight variations here and there.  We moved quickly from summer to autumn, and winter is knocking at the door.

Ecclesiates 3 says

¹  There is a time for everything,
    and a season for every activity under the heavens:

²     a time to be born and a time to die,
    a time to plant and a time to uproot,
³     a time to kill and a time to heal,
    a time to tear down and a time to build,
⁴     a time to weep and a time to laugh,
    a time to mourn and a time to dance,
⁵     a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
⁶     a time to search and a time to give up,
    a time to keep and a time to throw away,
⁷     a time to tear and a time to mend,
    a time to be silent and a time to speak,
⁸     a time to love and a time to hate,
    a time for war and a time for peace.

⁹ What do workers gain from their toil? ¹⁰ I have seen the burden God has laid on the human race. ¹¹ He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. ¹² I know that there is nothing better for people than to be happy and to do good while they live. ¹³ That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. ¹⁴ I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.

¹⁵ Whatever is has already been,
    and what will be has been before;
    and God will call the past to account.

I'm not sure I even understand all of that passage, but it does convey a couple of things to me: time is precious.  Each season we go through has purpose and rather than rush our lives to reach the next, we should embrace whatever experience we are in.  Also, everything is useful for our growth, understanding, and correction from God.  He will use the circumstances we are in to produce character change in us, when we are submitted to Him.

Time is moving fast, and after attending a funeral this weekend, I am painfully aware of how short it is.  But that is only evident when examined in light of eternity.  If we fail to see our existence as unending, and our lives as preparation for that, we miss how truly precious this time is.

The days go fast, and our lives fly by.  Before you know it, your baby boy is 8 years old.  It's easy to forget the cherubic face and tiny little body 

 

 

when I look at the tall, lean, jumping bean that Toby has become!

I'm thankful that he does not seem to be too big to want to come and snuggle with me when he wakes up in the night (even if I don't always appreciate it!), to even setting up camp on the floor beside my bed to be close.

We argue at times, but no matter what, he is always happy to have me sing to him at bedtime, and lay with him as he falls asleep.

Toby is, and always was, a doer!  He would rather be throwing, riding, or catching something in the yard than reading a book or watching TV.  He has a quick wit, and a kind heart.  I love this little monkey!!

Happy birthday Toby!  Forever my baby you'll be!

Fresh Eyes

I'm back from Tijuana, back in the routine, back to work.  Everything is the same, yet different.  I am different.  I am seeing the world through different eyes.  I'm noticing where my lifestyle is excessive, where attitudes are hardened, and where compassion is lacking.  

I'm clinging to this new perspective, that compels me to love my neighbor, to value all human life, to understand that all I have truly belongs to God.  I am simply a steward of my time, my possessions, and my resources.  

I'm not quite ready to sell it all and take the family on the mission field, but that's because I don't feel like that's what God is asking me to do right now.  Instead, he is asking me to look at everything I just mentioned, and evaluate how I am using it.  Where do I need to make changes, so that I can shed the distractions and things that cause me stress?  How can I be more intentional with my resources, so that my relationships are stronger?

It's not news that debt is bad, narrow margins cause stress, and self-centeredness is destructive.  But avoiding them is a lifelong challenge!

I appreciate the timing of this trip, and the sad passing of friends recently, to combine in a powerful reminder, no, more of a wake-up call, of the brevity and purpose of life.

If you cling to your life, you will lose it, and if you let your life go, you will save it.

Luke 17:33

Maybe it sounds extreme, to lay down your will for the purpose of Christ, but surely that is the ONLY appropriate response when you believe that He first laid down His.

Check out this brief glimpse into our trip!

Legacy

As I write this, I am one week out from flying to Tijuana Mexico.  I will be part of a 9 person team on a 9 day trip.  We will serve long term missionaries who have established an orphanage in the city, and are now constructing a feeding center for street kids.   We will help in construction, but also get to spend time with the kids!

It was not an easy decision to go on the trip.  It's been 13 years (exactly) since my first, and only, previous missions trip to Africa.  I have felt the pull to go on other trips, but leaving the kids was not feasible, and so Scott has often gone instead, since we both feel a call to the mission field.

This time was different, and I felt the pull to go this time.  However, it will be the first time, in 10 years (i.e. ever) that I have left the kids for more than one night, let alone to a location far away.  I'm very thankful Scott was supportive and agreed to remain at home with them. 

I wouldn't say I'm excited about the trip, but I do feel peace.  Since I lean toward the pessimistic in my day dreaming, I can imagine all kinds of major issues occurring in my absence, or on the trip.  However, I feel peace and resolve in the midst of that - a sure sign that God is with me.  That peace has covered me in other times of major upheaval, so I know it's in God's plan.

That said, I am still aware that at any time tragedy can strike.  We are not promised tomorrow.

Do not boast about tomorrow,
    for you do not know what a day may bring.

Proverbs 27:1

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:34

In fact, we currently have a good friend fighting for his life after suffering 5 brain aneurysms.  Nothing brings home the reality of mortality, and brevity of life, like that. 

Unsurprisingly, I have been thinking about legacy.  Not the stuff we list in our last will and testament, but how we want to leave the world changed.  You don't need a long life to impact the people, or even the systems, you encounter.  It's never too late to build the legacy we want. 

I wonder what we would like to be remembered for.  I wonder if we live our lives, every day, to that end.  What would I want to be my lasting legacy?  Good question, I'm glad you asked! 

For my children to know and follow Jesus.  For them to have a foundation of love and truth that they display to the world.

For my friends and acquaintances to know that I love Jesus, and despite my weaknesses and mistakes, His presence was tangible in my life.

For everyone to consider the purpose of their life, and their eternal destination before they no longer can.

To inspire anyone to give more, love louder, and care about others.

Our lives are not our own.  Freedom is an illusion!  We see submission to God as slavery, without choice, but believe that we are free without God - believe the rat race, and world system of values to be freedom.  All the while we are swept into values of success, wealth, and comfort.  We ceaselessly work, pay and stress in order to progress in those areas, which is slavery in no uncertain terms!

That's the default - do as the world does.  The specifics may be different in different cultures, but nonetheless, you must follow the tide. 

In contrast, Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light."

Matthew 11:28-30

For all that God calls us to, he provides the strength we need.  He is a gentle and caring Father, who ask his children to do his will, and receive eternal rewards.  It is only he that can offer that, and freely offers it to all who are willing to follow him, and reject the world system of empty promises and meaningless goals.

What will be your legacy?

Photo shoot

Marking the end of a great fortnight with my sisters crew, we got some professional pictures!

Cool Rider

One of our goals for this summer was to help Emma ride her bike without stabilizers.  Toby has long been riding on two wheels, but Emma has struggled with nervousness due to the instability with lack of speed.

Yesterday, after a long couple of weeks with Scott being gone a lot (big renovation at church), we took it easy for the afternoon and decided to take the kids over to their school and practice with the bikes. 

Scott helped Emma find her balance, without pedalling and then she worked her way up to this!



She is super proud of herself, not least because there were many moments that she wanted to give up and try another day. 

Now we need to get her a size appropriate bike!!

10 Years

Emma walked in to my room this morning and looked old beyond her years!  It is incredible to think how much has happened in the past 10 years, since we got her initial pre-natal diagnosis.  What a wild ride of ups and downs, uncharted territory and incredible obstacles.

She truly is a limited edition.  I would add, a most precious rarity. 

Just Keep Swimming

It was unexpected when Toby announced that he wanted to join the swim team at our pool.  Mainly because he had shown no interest when his cousin signed up back in May, and the team started daily practices through June, and started with a swim meet at the end of June.  

So when he told us he wanted to sign up, he was already a month behind on practicing, not to mention being a total rookie - it took us a couple weeks to even get him to take the deep water test to use the slide this year!

His first swim meet was a couple of days later, and he was put in to swim the butterfly and backstroke.  He was disqualified for form from the butterfly race, and cried about the backstroke, refusing to swim it!

For the next few weeks he was doing the butterfly every meeting, and then freestyle in a relay and breast stroke.  He went to practice at 8:30am five days a week, learning the strokes and how to dive off the blocks.

We were both surprised and proud when we found out his times at the league semi-finals last Saturday, were enough to be in the top 6, from 8 teams!  So, this week we headed to the league championships, for a butterfly and breaststroke.

 

 It was unseasonably chilly and wet, but he gave it his all, coming in 4 of 6 in both races.

But that was more than enough for him to receive this award at tonights banquet!

It was a short season, with daily practice and weekly competitions, but Toby seemed to thrive on it and is sad that he won't be carrying on for the rest of the summer.  We'll have to see where it goes from here!

Not feeling it

For a few days now I have had the same message on my heart: Just because you don't feel like it, doesn't mean God won't still require it.

Boom!  It sounds like something I say to my kids, doesn't matter if you don't want to do it, it's non-negotiable. 

There's a very clear account of this in the Bible, a story we all have heard of, but may not have studied. The Book of Jonah.  Called to go to the wicked Ninevites and share good news with them, Jonah fled.  He did not want to give these heinous people the opportunity to repent, and be saved, he didn't feel like it and refused to obey.

Jonah literally tried to outrun God's call on his life. Int he process, he jeopardized the safety of many others - the others on the boat.  He almost took them down with him!  We see that he accepted this responsibility and left them. 

He stayed in the belly of the huge fish for 3 days.  We often talk about hitting rock bottom, but that's quite a graphic illustration!  He had been destined to drown, but God saved him, by way of a fish.  He saved him for a purpose.  It is in that place where Jonah realizes that it is futile to resist God. 

"Those who cling to worthless idols
    turn away from God's love for them.
But I, with shouts of grateful praise,
    will sacrifice to you.
What I have vowed I will make good.
    I will say, 'Salvation comes from the Lord.'"

Jonah 2: 8-9

After the fish had delivered him to the place God wanted, Jonah finally obeyed God.  He went in to the city (of a people who committed atrocities we can only liken to that of ISIS these days) and told them they had 30 days before God would judge them.  And they heard, and repented.  God spared the city, the Ninevites turned to the Lord.

Jonah, despite his obedience, was still not feeling it!  This has fascinated me since I read the story.  "But to Jonah this seemed very wrong, and he became angry." verse 1 of chapter 4 says.

Note: Jonah grows bitter and actually wants to die, rather than see the Lord's great compassion for the Ninevites.  He misses God's heart, and the blessing that comes from knowing God has used your life.  That's a tragedy.

When we resist God's call on our life, he may choose someone else, but hopefully he may pursue us until we surrender to him.  In that moment, we have a choice.  We can remember God's great mercy and compassion toward us, and not resent what God has asked us to do.  Or, we can grow bitter and angry, effectively dying to all the good God promises. 

In these days, we are often living self-directed lives.  We come and go as we please, we pray about decisions, but often we know in our hearts what we intend to do.  We refuse to surrender to God's call, whether that call is to go, to preach, or simply to follow Him. 

Jesus is very clear that following him, to eternal life, requires sacrifice on our part - though nowhere near the extent that he sacrificed.  He wants us to consider that before we go - not so we are scared or intimidated, but so that we are not ignorant, unprepared, or deceived. 

I'm not saying that disobedience is the cause of whatever struggles you are facing, but it's certainly never too late to cry out to God and ask him to lead you through the storm to where you need to be.