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Friday, 4 January 2013

Music to my ears

The sun has set, the shofar has been blown, the candles were lit and a fresh loaf of challah bread is waiting tantalizingly on the table next to some butter... everything in place to welcome another Sabbath.  I sit and type the sounds of this weekly slice of heaven...

Melina is behind me on the iMac learning to play her ukalale (I think that makes her ultra awesomely cool!).  The strings are being pluked and the sound resonates a merriment that makes me smile.  Honestly, who can be grumpy EVER when a ukalele is being played?

Contrary to the happiness of the ukalale is the sound of Sivana's occasional whines as she continues to recover from nearly five days of high fevers.  But she squeals suddenly in delight as her brother goes racing by using Avalyn's baby walker as a skateboard!

Ukalale, sudden squeals of joy, wheels racing by and the occasional "YES!" from Ethan as he skids around the corner (sigh)... Duane's laughter as he realizes what our son is doing... a laughter that sounds somewhat triumphant like he knows exactly whatever is running through Ethan's veins that makes him try dare-devil tricks with even simple baby equipment!  And now Sivana is crying because her brother decided to skid over her toes!  Papa Bear to the rescue.

I hear Isabel's movie in the background, Finding Nemo, (one of her alltime favs) and I can imagine that Anika is sitting next to her.  She is also recovering from five or six days of high fevers.  She has lost quite a bit of weight but her energy seems to be starting to come back today.

The baby monitor has gone quiet as Avalyn finally settles into her last nap of the day. 

Antoinette is like a ninja weaving in and out of the chaos picking up after the kids, wiping noses (but only the kids'!) and making sure everything is running in order... or as much order as can be found in this house at this stage of our lives.

And then there is the plunking sounds of my fingers on the keyboard.  I am using Duane's PC which is next to my iMac (which is being used by my ukalale-plucking daughter).  And now Sivana is trying to sing with her strumming to "Somewhere over the rainbow."

This is my pot of gold... right here, right now. 

It's been an incredibly long week... nothing accomplished other than holding one or two kids at a time taking temperatures, placing them in cooling baths, trying to make meals, waking up in the night to Sivana vomitting several nights in a row.  May this Sabbath greet us with the holiness He promised us at Creation... its sanctification bringing us reprieve from our labour both physically, emotionally and mentaly.  A time to spend together as family, singing, praying, studying God's word and growing stronger as a family.

My favourite day of the week.

May this Sabbath greet you all out there ready for a reprieve from your own labours.  May you find peace and rest until tomorrow's sundown and beyond.  May you feel Him reaching out to you, whether consciously or unconsciously, and may you meet with Him like a promised weekly date-night! :)  And may you find joy in His love for you, for His creation, because as He saw it, "It is good."  God bless you all out there.

Wednesday, 2 January 2013

Set Apart

"Before I formed you in the womb I knew you, before you were born I set you apart" 
Jeremiah 1:5

We are called to be set apart.
We were called to be set apart before we were born.
But how easy is that?  How many of us avoid standing out like the plague?  How many of us give anything, do anything to be "just like everyone else?"

Why are we afraid to do what we were created to do?

The other day, Ethan wanted to hold Avalyn on the rocking chair.  From before she was born, I would "speak" for Avalyn using a high pitched kid's voice so the kids could "talk" to her and she could answer them.  (It's a great way to find out what the kids are really thinking and even more fun to have them feel that the baby is already apart of what's going on long before he/she is out of the womb).  Lately, because everything that comes within Avalyn's reach goes straight to her mouth, when she "talks" to the kids, it involves "Oooh, I like that... but can I EAT it?"

The kids find this hilarious.  If they try to show her a picture they drew, I'll say on behalf of Avalyn "Oh, I like the blue and the purple... can you bring it closer so I can EAT it?"  They laugh and say "Avalyn, you can't eat it!"

So Ethan was happily holding Avalyn and she just LOVES her big brother.  I was right there to make sure Avalyn sat safely on his lap and the conversation began...

"Oh Ethan, I like your shirt."

"Thanks, Avalyn, I like it too because it has red.  I like red."

"Yeah, red is nice.  But can I eat it?"

(giggle)  "No, Avalyn, you can't eat red and you can't eat my shirt.  But someday you'll be bigger and you'll be able to eat real food."

"Can i eat food like you, Ethan?"

"Well, you'll be able to eat food but not the food I have to eat.  My food is different."

"Why is your food different, Ethan?"

"Well, God chose to make me different so I have to eat food that's different from everyone else's."

(GULP)... At this point, I'm wondering who this is more therapeutic for!  Figured we'd keep going with this...

"God made you different?  Do you like being made different, Ethan?"

Here there was a slight pause as I watched my four year old son ponder the question.  And then he looked back at his little sister on his lap and said earnestly:

"Yes, I like that He made me different.  But sometimes it's lonely."

Well, I'm sure you can imagine the tears that welled up in my eyes and I just couldn't play the game anymore.  I hugged my son and said "Thank you, Ethan for being willing to be made different for God.  You are a very special boy and I love you so much.  I'm so sorry it feels lonely sometimes.  We'll always do our best to be there for you.  And I hope that even when you feel lonely, that you remember that God is always with you."

My beloved dear ones... is this the faith of a child that Jesus spoke of?  Is this true willingness of heart to surrender to God's will even when it means walking a lonely road?  What does this say when a child can accept a road set a part for the sake of BEING WITH God?

I tell you, I was greatly humbled.  I looked at my own life and smiled at the moments of fearlessness where I felt set apart, but alone... but gloriously alone.  Alone, not in a way where you are fragile and forgotten, but alone in a way that I would imagine Moses felt when he saw the burning bush and knew that no one else could ever understand this moment.  Alone in the way a bird would rise above a set of clouds and feel as though the Creator Himself could see him.

Yet how many of us fear being alone?  Perhaps we fear that very feeling of being completely exposed to Him?

But He has known you since before He formed you.  Somewhere in time, as God rules it, there was a moment between just you and Him.  It was sacred.  You were set apart in that moment.  I share this post with you, not just because what I witnessed between my son and his little sister touched me so deeply, but because I hope it stirs some deep memory from within... so deep you cannot even place your finger on it.  I pray it reawakens your confidence in WHO you are and WHAT He has called you to do with your life.

Not to be perfect, but to be His.

Not to be afraid, but to be His light... even if it means standing alone.

My prayer for you tonight is that you find peace in the moment your soul was created... to embrace the moments you felt alone in your life and see if your eyes can look back to see HOW He sought you in those moments.  Did you seek Him?  Did you find each other?  If not, revisit those moments with your arms open to receive Him in your loneliness.  Rise above those clouds to where the sun beams embrace you and feel our Father SEE you.  I pray you do not seek comfort in hiding among the popularity of mankind, but rather rejoice in the ways you were set apart.  In Jesus' name... Amen.

Sivana's Purple Friends

Beloved family & friends (those known and unknown),

Many of you are parents.  Therefore you know the pain of witnessing helplessly your own child's suffering.  It is deep, it is solemn, it is humbling.  But how does one describe being witness to their child rising above that suffering to rejoice in life?  Well, you know me... I am never short on words, so here's my attempt at describing watching our darling Sivana discover the difference in what her God-given ears can hear with the help of some "purple friends".

Sivana's purple hearing aids have opened her to a whole new world!  The molds fill the outer ear cavity and the devices themselves loop over the ears.  Both the molds and hearing aids are Sivana's favourite colour... Purple.

When the audiologist put them in her ear, Sivana was tolerant (as the audiologist has stuck many different devices in her ears for all the tests performed so this was nothing out of the ordinary).  Sivana was sitting on my lap when the audiologist turned the hearing aids on.  She then spoke to me and Sivana immediately whipped her head up to look at the lady in surprise.  I laughed and she immediately whipped her head around to look at me with just as much surprise.  I asked her "Sivana, can you hear mommy?" to which she immediately replied with awe, "yeah!"  I signed the following while speaking: "Sivana... Purple friends help your ears to hear.  Do you like purple friends?"  Again she replied "YEAH!!"

These last few days, she has been singing, playing her iPod game called Starfall which has all the alphabet and their phonemic sound and she has been choosing the letters she couldn't hear before and playing them over and over again.

I caught her placing her hand over her mouth to "feel" the "t" sound and she delighted in finally hearing it... Finally understanding the sounds I was making when I'd put her hand to my mouth when she wasn't understanding me.

She is adjusting to hearing herself speak but doing so well!  Even the sound of her footsteps seems to delight her and she stomps around the house.  When morning comes and I hold up her hearing aids, she laughs and runs to me saying "yeah... Pupo fend... Elp ea-uh"

Yes, my darling girl, purple friends help your ears...

I love that she hears her name.  I love that when I whispered "Mommy loves you" by her ear, that she actually heard me!  Such a simple thing but as a parent, you know how much you want your children to KNOW you love them, not just by action but by the comfort of your voice, too.

I thank God almighty for His guidance, for a gut instinct and a pediatrician who listened.  For a brilliant little girl who fights for life with her one kidney and her special ears!

In addition to audiology, we are being referred to SMD (society for Manitobans with disabilities), Ears-Nose-Throat Specialist, and Genetics.  Perhaps we can get a better idea of WHY and exactly WHAT is going on.

For her heart murmur, we see a cardiologist in January.

For her one kidney, we were at Nephrology in mid-December and her blood pressure
readings these last few months are in the 50th percentile so they are happy.  She has grown well and her blood and urine samples came back looking good.  Her one kidney is offering 99.9% overall kidney function!  We praise our heavenly Father for this blessing.  We also celebrate the fact that we don't have to return to nephrology for a whole year! At which point they'll do another ultrasound of the kidney.

Thank you for uniting with us in prayer.  We cherish our babies so much and while my heart aches some days at the challenges my babies seem to face, I rejoice at their strength and love for life.

I love you all so much and thank you for being there.