Choosing to Speak in Love // A Reflection on Year Three of Marriage

December 20th marks our anniversary.  It’s been three years since we said our vows to one another, deciding that for better or for worse, this would be our forever person.

When I look back at our wedding video and read the post I wrote for our first anniversary, I remember how absolutely, overwhelmingly in love I was with my husband.

And I still am.

But although that love I felt then was real and true, it hadn’t yet gone through the fire.  It had yet to be tested and tried and proven true.

It was only a matter of time. Read more…

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Summer Fun + More Surgery // An Update on Josiah

As many of you have probably realized by now, I tend to be a little verbose.  What can I say?  I like a good story.  And I think it is in the details that life becomes more scrumptious.

But sometimes, it’s just been a long day.  And the creative energy (any energy actually) is just non-existent.

So concise will just have to do.  So here it goes.

Summer flew by.  Josiah had surgery in June.  It went well and in hindsight, it was good “practice” for the one coming up.

July was filled with lots of “firsts” for our not-so-little-anymore little man – first plane ride, first time experiencing a Phoenix summer, first haircut, first time seeing the extended family, first time hanging out at the bowling alley, etc.  Cue the pictures.

It was the best three week vacation any momma could ask for – a.k.a. sleeping in, not having to cook every meal, doting grandparents to watch the baby, actually getting dressed up for a night out.  Pure bliss.

And now somehow, it’s already August.  And the date that’s been looming on our calendar – August 16th – is already here.  The date of Josiah’s next surgery.

This is “the big one” that I have been alluding to in previous posts.  There are three main objectives for this surgery

  1. Go in and separate Josiah’s colon/rectum from his urethra as they are currently fused alongside each other,
  2. Bring his colon/rectum down through the right muscles in his bum without damaging any other nerves, and
  3. Create his anus.

The procedure will take a minimum of four hours and we will be admitted into the hospital, so we are anticipating having to stay a few nights.

A couple weeks after this procedure, we will begin the next step in this process – anal dilation.  Josiah’s body will think this new anus is an open wound and potentially try to close it back up.  Thus, we will need to dilate morning and evening to stretch out his new anus and prepare it to be able to pass stool.  Josiah will still have his colostomy bag during this time.

Depending on how the dilation process goes, we will do this for a couple of months before Josiah has his final surgery to reconnect everything so that he will pass stool through his anus.

A poopy diaper is probably not at the top of anyone’s list of dreams but for this famiLee, it will be a dream almost a year in the making.

And then the real journey of faith begins.  But more on that later.

One thing I have learned over the last almost nine months since Josiah was born is to never be ashamed or afraid to ask for prayer.  And to keep asking for it.  And to keep believing with a crazy, ridiculous, incomprehensible faith that the impossible can happen when God’s people come together before the Almighty Creator.

So, will you pray with us?  

Please pray for God’s healing hands to guide our surgeon and his team.  For the surgery to be 100% successful.  That there will be no damage to nerves, muscles, tissues, etc.  For Josiah to wake up from anesthesia well and quickly resume his happy, healthy, giggly, hungry ways.  That my husband and I will have grace for ourselves, for one another, and for everyone involved in this process.

But most of all, please pray that God’s glory would be revealed through our son’s little body.  That somehow, a testimony would arise from the ashes of this season.  That healing would triumph.  

From our lips to His throne – “Jehovah has healed.”

An Opportunity

As typical first-time parents, whenever people would ask us whether we wanted a boy or a girl when I was pregnant, we would always respond with something like, “You know, it doesn’t really matter either way.  All we really want is for this baby to be healthy.”

Fast forward several months later and there we were in the NICU, staring down at our 29-week-old baby boy hooked up to machines and monitors that were literally keeping him alive.

I still remember the chaos that was storming inside of me as I walked up to his incubator for the first time.  As everything started to look like a rainy windshield, I vaguely realized there were doctors, nurses, and specialists going in and out of our room, murmuring strange things like, “absent left kidney…”, “a hole in his heart…”, “possible tethered spinal cord…”, “surgery first thing tomorrow morning…”

As the shock began to wear off and the reality of our son’s prognosis began to set in, I dared myself to ask the question that had been nagging at my weary soul – “God…why?”

Google only proved to exponentially multiply the fear, worry, and dismay.  As words like, birth defect…” ,”exact cause unknown…”, “1 in 5,000…”, “1 in 400,000…” floated across the screen, it only caused the question to echo louder and louder in the recesses of my soul – “God…WHY?  Why our son?”

I was (and sometimes still am) stuck between a rock and a hard place.  I know that He is the Good Father, the Almighty God, the Great Physician, the Giver of Life.  I know that He fearfully and wonderfully made my son.  I know that He works miracles, heals the sick, and raises the dead to life.  I know that He loves His children and desires to give them the very best.

And sometimes the gravity of this Truth in the face of the impossible leaves me awestruck.  It compels me to rise up from the despair and declare that once again, my son will be fully healed.

But sometimes the disparity of this Truth in the face of the impossible leaves me conflicted.  I’ve asked this so many times I’ve lost count – God, You don’t do birth defects.  That’s not in Your nature.  That’s not what you do as the Almighty Father God.  So why does Josiah have this ‘birth defect?’  How does this make sense?”

I wish I could say that I’ve heard an answer.  That I’ve heard His audible voice or seen the presence of an angel.

But then I wonder…if Josiah’s birth hadn’t happened this way, if he hadn’t had any of these medical conditions…would I have prayed as fervently as I have in the last several months?  Would I have been stretched to believe in the impossible, not because I’m some superwoman of faith, but because there IS NO OTHER OPTION but for my son to be healed?

Would I have witnessed miracle after miracle, seeing him grow from a 2 lb. 6 oz. tiny baby only just a bit bigger than a dollar bill to the almost 15 pound happy chunker that he is today?  Would I have experienced the awe in hearing the incredible news that the two holes in his heart have closed up with no intervention only five months after his early birth?  And I’m only just getting started!

Now don’t get me wrong…I’m human and I’m a mom.  If I had to choose between my son having medical conditions or my son being a healthy, normal boy, I would choose the latter in a heartbeat.

But here in the tension of what is and what truly is, we’ve been given an opportunity.

An opportunity to testify that God is alive and at work through the prayers of His people.  An opportunity to actually witness creative miracles come to pass.  An opportunity for our faith to be strengthened in the refiner’s fire.  An opportunity to find treasures in the heart of the Almighty Father.

I still don’t know the answer to  “God…why?”  And maybe we will never fully know the answer.  But I do know this.  We’ve been given a precious opportunity.  One that maybe only 1 in 400,000 families gets to experience.  And I trust that on the other side of this, we will taste of His goodness in ways that we cannot yet fathom.

 

A Day in the Life of a NICU Mom

Josiah has been home for a week and for the most part, it’s been a smooth transition (minus the times I’ve almost fallen asleep nursing him at 3 in the morning 🙂 ).

But before I get caught up in all the daily little and big things that come with being a mom, I wanted to take the time to reflect and remember what my life was like as a NICU mom.

Because as painful as those 9 weeks were, that was the first time I truly experienced how His grace could be sufficient enough for me.  Those slow weeks showed me what I was capable of when I believed in my Good Father, that He would carry me through.

The 10 foot by 10 foot space that was Josiah’s NICU room became my own little sanctuary.  Behind that closed curtain, I danced with my son for the first time to the tune of the mobile playing above his crib.  It was where I dreamed about a day when Josiah would run and play, and wept with countless tears asking the Lord for strength I didn’t even know how to ask for.

It’s where we faced terrifying moments that tested our faith, all the while looking at the face of our precious, sweet son who was braver and stronger than us.

These pictures below represent just a snapshot of what my daily life was like from November 20, 2016 to January 23, 2017.  It was filled with lots of “firsts” – Josiah’s first nursery, crib, Thanksgiving, Christmas, New Year’s, nursing and eating, and bath time…just to name a few.  Our brave little man also endured his first surgery, ultrasound, and MRI during that time as well.  But he was always surrounded by a state-of-the-art medical team who became more like family to us during our 9 week stay.  And without all of this, Josiah would not be able to be with us today.  So for all that those 9 weeks were – the most miraculous, terrifying, heart-breaking, glorious season of my life thus far – I want to remember it all fondly.  It’s become a part of me in a way that I will never forget.

And one day, my sweet son, you may be reading this as well.  And although you of course won’t remember any of it, I want you to know how incredible your birth was.  How miraculously the Lord broke in and healed you in ways that nobody could explain.  How brave you were and how proud of you we are, your daddy and I.  This is your story as much as it is mommy’s and daddy’s.  Now it’s yours for the telling.

 

Josiah is Home! // One Word for 2017

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On Monday, January 23rd, after just over 9 weeks in the NICU, our miracle boy came home!

Even though he’s been home for a week now, it’s still a little surreal.  Sometimes I get up from nursing Josiah and I glance at myself quickly in the mirror and think, “Woah, there’s actually a real baby in my arms, in our home right now!”  And as hard as it is to continually nurse and care for a little one all through the day and night (I fully believe I never understood the meaning of exhaustion until I become a mom!), I cannot even begin to express the emotions welling up from deep within the recesses of my heart.

The day before we finally got discharged from the NICU, one of the nurse practitioners came by to do her final assessment of Josiah.  We started reflecting on his progress over the last 9 weeks (you can read more on that here and here).  Apart from his VACTERL syndrome imperforate anus condition (which he would have had even if he had made it to full term), he had almost no preemie-related issues (e.g. breathing problems, digestive problems, feeding issues, etc.).

She went on to say, “Honestly, for how early he was born at 29 weeks and for not having any of those preemie issues, all I can say is that this was a miracle.  He literally is a miracle.”

And in that moment, 9 weeks of heartache…9 weeks of praying and crying before the Lord…9 weeks of asking hard questions…everything, all of it, was justified.  

Her simple confession, both as a medical professional and as an “outsider” (not a family member or close friend) wholly validated all that we had gone through.

Already, in just two months of life, our son is a living testimony of how God is real and He loves to do the impossible.

Last year, I chose the word “Immanuel” as my One Word for 2016, and reflecting upon all that we had gone through at the end of last year…He truly, truly was with us.  There is no other way we would have made it.

And as the year closed and a new one began, I felt the stirring on my heart to believe.  To reach for the impossible in a deeper, daily way.

To declare that this year, 2017 is going to be about miracles.  

After all, I’m looking at one every day.

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To the countless ones who prayed with us during these last 9 weeks, we are indebted to you.  Thank you for being our village, our home team, and for carrying us through this season.  We are so thankful to have him home.