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.

 

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.

Reflecting on Immanuel

The last couple of days, it’s been harder to answer the question, “How are you really doing?”  The truth is, I’m okay, I really am.  And I know one day, this will all be part of the story.

But at the same time, I’m wrestling.  I’m struggling to contain the whirlwind of emotions and I’m not sure what to do when I find an unexpected leak here and there.

When we started calling and texting all of our family to tell them that Josiah had come early, my aunt shared with me something I didn’t know I needed to hear until I had heard it…and it’s been echoing in the recesses of my soul ever since…

It’s okay to cry.  It’s okay to ask God, “Why??”  It’s okay to face the wave of emotions that will continue to come.  Your tears and your questions are not coming out of a place of unbelief.  You need to ask.  You need to wrestle.  You need to process.  Because when you do all of that before the God who is full of grace and mercy, you will begin to hear His voice.  

I have declared the truth and I will continue to declare it all the days of my life – the promise of God is that He will heal Josiah.  And something immeasurably glorious is going to come out of all of this.

But some days it’s still hard.

The day before Christmas Eve, the NICU organized a toy shoppe event at the hospital where parents could come and receive toys and gifts for their child.  We browsed through the vast selection of donated items, imagining the day when Josiah will one day play with mega blocks and toy trucks.

We got back to his room to find the monitors beeping and Josiah crying in his incubator.

My heart broke.

How many other times has our little boy been crying in his incubator because his diaper is wet or his tummy is hungry and there is no mommy or daddy to meet his basic needs?

On Christmas day, we were making the hour long drive after church to the NICU when I started to replay that scene in my head again, asking myself that same question once more.

God…why?  I asked.  He’s alone right now in his incubator.  What if he’s hungry?  What if he knows that mommy and daddy aren’t there?  How is it okay that my child is 34 weeks gestation, should have been in my womb for 6 more weeks, yet he already knows what it is like to be lonely?

And that’s when I heard Him.  It was a whisper, but it was clear.

I AM with him, child.

The tears started to flow.

Immanuel.  God with us.  It was the word that I had chosen for my One Word for 2016.  It was the word that I had claimed for this year, not fully realizing just how perfectly it would come to pass.

This journey has only just begun.  Our first steps into parenthood have brought us into uncharted territory.  I know there will be more days that break my heart, but also more moments that will take my breath away and cause me to wonder how I ever could have lived any other way.  There is a whole future unfolding before us that we are only beginning to grasp.

But this I know.  Immanuel.  He is with us.  Today, tomorrow, and the next.  He will never leave us.  Through our treasured days and our dark nights of the soul, we are never alone.

A Month of Miracles // An Update on Josiah

They all said that becoming a parent will change you forever, and you can never go back to not being a mom or dad.  They were right.

Tomorrow it will be a month (four weeks to be exact) since Josiah entered our world in the most terrifying and miraculous way.  And our world will never be the same.

I have never experienced such a wide range of emotions in such a short amount of time.  I have never felt so helpless and heartbroken than when I watched my son’s silent tears roll down his tiny, tiny face as a breathing tube was put down his throat in preparation for surgery…just 30 hours after his early birth.  I have never felt such an overwhelming sense of love than when countless family, friends, acquaintances, and even strangers sent words of encouragement, prayers, meals, gifts, checks in the mail, and the list just goes on.

And through out each day, gratitude has become my ever present companion.  It brings sparkle to our hospital room and shines upon every interaction I have with my sweet son.

Many of you have read my last post with an update on Josiah’s physical condition and what the doctors have told us thus far.  We are still pressing in for creative miracles and for complete healing over our son.

But today, as I reflect upon the first four weeks of his young life, I’m astounded at his progress.  And as a testimony to your prayers and to the goodness of our Father, I want to celebrate the ways our miracle son has…well, become a living miracle before our very eyes.

So, below are a couple of pictures from each of the last four weeks to visually mark his amazing progress. Read more…

Our Little, Mighty Warrior // An Update & Prayer Requests

Josiah’s birth and his first two weeks of life have taught us more about faith, trust, and surrender than we have ever learned in all of our days combined.  Whenever somebody has asked how we’re doing lately, my common response has been, “I feel like I’ve lived a year in two weeks!

As I mentioned in my last post regarding the promise God has given us over him and his name – that Jehovah has healed – this has become the foundation upon which we say every prayer, declare every word over our son, and the filter through which we listen to what the doctors have been telling us.

I have never been more thankful for medical professionals.  Every surgeon, doctor, nurse practitioner, and nurse who has been with our son…my heart overflows with such gratitude for their dedication to their field.  To all of my friends out there who are training to enter or who are in the medical field – thank you.  Thank you for all your countless hours of studying, taking out too many loans, spending years and years in school, and sacrificing your own lives and families in order to help someone have a fighting chance at a beautiful life.

Yet as much as I have appreciated all of the medical professionals who have been with Josiah, we are constantly reminding ourselves of the truth – God is the Great Physician, He has the final word, and as the Creator God, He is not done with Josiah yet.

So with that truth anchoring our souls, I will give an update as to what the doctors have told us so far.  As you pray, please do so with the same truth anchoring you that is anchoring us…God is still in the process of fearfully and wonderfully making our son.  We are contending to see some miracles that will astound our doctors and give glory to our Sovereign God.

Read more…