We’ve Come a Long Way // An Update on Josiah

I can hardly believe it’s already July and this is only my fourth post this year!

Actually, well yes, I can believe it.  Because despite all of my good intentions and the many blog ideas that are recorded on my phone, my days are now mostly filled with this kind of fun…

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Don’t even get me started on the time I found him in the living room, in his birthday suit, playing with his diaper…the diaper I had just put on him about 30 seconds earlier.

Thank the good Shepherd there was no poop in that diaper! 🙂

Speaking of poop, a lot has happened since my last post about Josiah‘s progress after his last surgery in January. Read more…

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The End & The Beginning // An Update on Josiah

A year ago, I could not fathom how we were going to get through 2017.  We were just about to leave the NICU after 9 weeks, knowing that we would make the hospital our second home with the multiple surgeries and follow up appointments Josiah would need.

Yet, here we are a year later, three surgeries down and only one more to go.

It was only possible by the grace of God and by your prayers.  Truly.

And as we head into this last surgery, we are anchoring our souls on that truth once more.  That His grace is truly sufficient enough for us and the prayers of a righteous person are powerful and effective.

So, what does this last surgery look like and what does it mean for Josiah? Read more…

A Reflection on Our Year of Miracles // One Word for 2018

It’s ten days into 2018 and I’ve finally started to remember to write 2018 instead of 2017.  Which means 2018 must be here to stay, right? 🙂

We kicked off the New Year with a sick baby – full blown coughing, sneezing, snot drizzled everywhere, low-grade fever, no sleep…oh the joys of parenthood.

And just as the kiddo started to get better…the husband got sick.  And then just as he started to get better…yup, you guessed it…I got sick.

Which is why this is being written ten days into 2018, instead of on the 1st of January.

I digress.

A couple of years ago I learned about One Word 365 from my sweet blogger friend Sarah.  And heading into 2016, I just knew with a strange certainty that the word for that year would be “Immanuel” – God With Us.

At the time, I had no idea that my first-born son would be born in 2016, 10.5 weeks early.  There was no way to anticipate the up and down journey it would all be, and that my one word – Immanuel – would become such an anchor for us in that season.

Heading into 2017, I felt such conviction that it would be a year of miracles.  We had just witnessed our little 29 weeker thrive in the NICU, surprise the doctors despite all of his medical diagnoses, and come home before his expected due date.

But there I was, the last day of 2017, permanently situated on my glider as I tried to rock a very cranky, sniffly little boy to sleep. Read more…

Dear Son, Today You’re One…

Last night, I started to remember the hours that led up to your sudden entrance into this world.  I pulled up the note that I still have on my phone where I documented every hour that I was feeling what I thought were Braxton-Hicks contractions.  Looking back, I should have realized I was in preterm labor.  But in the hazy fog of pain, my brain just couldn’t even fathom the idea that you would be born at 29 weeks.  So early…too soon.

Every time I drive past the hospital where you were born, I remember your dad speeding down the highway at 3:30am…and that’s when I realized you were coming.  November 20th would be your birthday.

I still remember the moment you were born and the nurses found your heartbeat.  You were alive.  All 2 lbs and 6 oz of you was alive and ready to fight for survival.

They asked us what your name would be.  Daddy and I looked at each other and we knew exactly who you were meant to be.  Josiah.  It was God’s promise to us – “Jehovah Has Healed.”

Those early weeks in the NICU were a blur.  Every day we stepped into your little hospital nursery we didn’t know if it would be a good day or a hard day.  We definitely had our fair share of both.

But eventually we fell into a rhythm in the NICU.  And your little corner of the hospital became mommy’s bittersweet sanctuary.  It was my season of sitting in the refiner’s fire.  It’s where I started to learn that sometimes we don’t know the answer to “why?”  But in that tension of what is and what truly is, that is often where we find the greatest treasure.

And then, after 9 weeks in the NICU, you finally came home!  And that’s when it really started. 🙂

Those newborn days of over-exhaustion and total inadequacy.  Of looking at myself in the mirror and realizing that motherhood simultaneously ruins you and rebirths you.

But also realizing that the whole “the days are long but the years are short” and “babies don’t keep” are all true.  One day, this would all be a thing of the past.  And it made me try harder to treasure each moment, to mentally capture exactly what I felt when you first laughed, to breathe in your scent after a nighttime bath.

We had our everyday days.  Days filled with playing outside and learning new things.  And we had our hard days.  Days in the hospital, surgery after surgery, realizing that this was also a part of our reality.

But looking at you now, all I see is a sweet, smiling miracle.

Son, your life is living proof that God is good.  Every breath you take and every ounce you gain is living proof that God loves to do the impossible.  Every moment you learn something new and every time you continue to defy the odds and medical expectations, you are living proof that God has the final word.

So, thank you son.  Thank you for coming into our lives and turning everything upside down.  Thank you for giving your daddy and me the greatest year of our lives yet.

And I pray for the day that you begin to realize all this for yourself.  That you ask us about the story of your birth and how you came to be.  That you start to understand that your name holds God’s promise for you.  That you can read this and know just how truly blessed you are and how much you have blessed so many just by being alive.

Above all else, on this first birthday, I want you to know that everything we have been through this last year we would do it all again in a heartbeat.  Every joy and every trial has been more than worth it to witness the living miracle that you are.

So happy birthday, my sweet, sweet son.  The best is yet to come.

Love,

Momma

P.S.  I’m still banking on you saying “mommy” first.

 

 

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.

 

Celebrating 100 Days & Much More // An Update on Josiah

It’s been a while since I’ve written an update on Josiah here on the blog and a lot has happened!  Over the last six weeks, most days have felt like that popular parenting quote – “the days are long, but the years are short” – or however it goes.  There are days when I feel like all I have done is feed and keep a little human alive, and if I’ve showered or brushed my teeth, it’s been a REALLY good day.

But then there are those magical moments…those I-just-want-to-freeze-time-is-this-really-my-life moments…and the gratitude just overflows.  These are the wonderful things that I could only dream about when we were in the NICU.  And now, we are actually living this dream.  Here are some of the highlights below…

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This is literally a miracle.  Josiah is now almost TEN pounds.  Double digits, people!  I remember the times in the NICU when we were just rooting for him to get to three pounds.   When I look at this then-and-now picture, I can’t even find the words.  So beyond thankful for those chubby cheeks and fingers! Read more…

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.