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.

 

 

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Still Here // An Update on Josiah & Our Lives

Hi world!

(Stay tuned – or scroll down to the end – to see a cute, little sneak peak of what we have been working on with Josiah lately!)

It’s been a LONG time.  Almost three months, I know.  It feels like a lot happened these last three months, but then it also just feels like not much has happened because one day just blurs into the next and then on and on for eternity.  I guess that’s how one could describe motherhood. 🙂

Anywho, I am way overdue for an update on Josiah’s most recent surgery.  Long story short, the surgery itself went well.  It looked like we were smooth sailing until we went to see the surgeon again for our first post-op appointment.  At the time, there was a significant tear near his newly created anus which led to concern that the colon had retracted back in and that everything had not been brought down low enough.  All we could do was wait a few weeks for the new tear to heal and then we would take next steps.

It’s easier to talk about it now because it’s several months removed and the prognosis looks much better now than it did back then.  But you better believe those weeks of waiting and thinking the worst (that he would have to go back in for additional surgery, that his colon wouldn’t be functioning properly, etc.) were hard.  Really hard.  I don’t think it’s been that hard since our initial days in the NICU.

We prayed.  We wrestled with the Lord.  We cried.  We worried. Read more…

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.”

God’s Promises // An Update on Josiah

It has been almost six and a half months since the day that our lives changed forever.

It feels like yesterday and forever ago all at the same time.

There are days that I feel victorious.  Days when I am so confident in the mighty future the Lord has in store for our son…for miracles…for healing…for a radical testimony to come out of this little life.

And then there are days that I feel absolutely defeated.  Days when the doubts and worries and fears come rushing into the sink hole that has found its way into my soul.

Yet, woven throughout the new normal of our days, between diaper changes, bath time, nursing, playing, crying, and giggling, are the whispered reminders of God’s promises to us over our son.

See, right after Josiah was born, the Lord gave us two promises.  The first one came in the story of the meaning of his name – “Jehovah has healed” – which I wrote about here.

The second promise came through my dad the day after Josiah was born at 29 weeks.  For decades, my father has built a habit of starting out his day reading a few chapters from the Bible, not necessarily following a plan but just reading from Genesis to Revelation.  Time and time again, the Lord has spoken to him in the face of many difficult situations through the exact chapters he was to read for that day.

The Lord did not disappoint as my dad woke up on November 21, 2016, with a heavy heart, asking the Lord what had gone wrong.  How had this happened?  Not only was his first grandchild born prematurely, this little boy was also born with a birth defect.  He opened up the Word to the chapter that was next for that morning – John 9.

“As he passed by, he [Jesus] saw a man blind from birth.  And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’  Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him…'” (John 9:1-3; ESV)

It wasn’t an answer that made sense to our human minds.  But we knew it was a promise from the Lord.  That none of this was in vain.  That somehow, the works of God would be revealed through our little son’s body and life.

A few months ago, I was scrolling through Instagram when I saw that a friend of mine was creating art out of Scripture for thirty days.

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And in that moment, the Divine Voice broke through and silenced the busy traffic of my soul.  This…this is the truth over Josiah.  My ways are not your ways.  This is going to be good and this is going to be glorious.

My friend was kind enough to mail the original artwork to us, and it’s currently in Josiah’s room as a constant reminder of God’s promise.

No matter what happens the next few months, His Words are what we are going to hold on to.

This coming Wednesday morning, on June 7th, Josiah will have his second surgery (he had his first one the day after he was born) of four total surgeries to correct his imperforate anus.  Below are the specific prayer requests we desire to lift up before the Lord as we walk into this next step of healing for our son…

  1. That God’s mighty works would be displayed through Josiah.  We are contending for creative miracles, for the Lord to finish His perfect work of wonderfully and fearfully creating our son.  We want to see the look of shock and awe on the faces of Josiah’s surgeons and medical staff as they examine his development and progress.
  2. That all necessary medical intervention will be 100% successful.  We are believing for everything that his surgery team has planned for Josiah’s body to go even better than planned.  We are asking for His angels to guide the hands of all of the medical staff who will be a part of Josiah’s case.
  3. That recovery and healing will be quick and as painless as possible.  And also grace and mercy over my husband and me as we tend to Josiah post-op and work through next steps at home (e.g. continuing to change his colostomy bag, eventual daily anal dilation, etc.) to prepare Josiah for his last two surgeries.

A couple of weeks after the surgery this Wednesday, Josiah will have one more procedure (that will still require general anesthesia).  The information his surgery team collects from that procedure will determine the final plans for Josiah’s major surgery in August.  After that, as long as the dilation process is going well at home, Josiah will have his final redirect surgery sometime in the fall (we are hoping everything is done by his first birthday/Thanksgiving).

To all of our prayer warriors who are fighting alongside us…thank you.  Truly.  I wish I could reach out and give you each a virtual hug.  Your declarations of truth before His throne of grace strengthen us in ways you cannot even imagine.

The road ahead looks long and it’s definitely not going to be easy.  But this I know.  It’s going to be good.  And it’s going to be glorious.

One Day

My dear son,

I remember that moment like it was yesterday.  You were still in the NICU, but we had just gotten the news that you were going to be discharged earlier than expected.  Mommy had not yet finished your nursery, so she found herself standing in a long line at IKEA that morning before heading to the hospital.

Behind me was a family with two little boys, probably about six and eight-years-old.  They were running in and around the bins of extra stuff IKEA tries to entice you to buy while you’re checking out, making a huge, fun mess of things.  Without even turning around I knew that their tired mommy was giving them the “you-better-stop-this-right-now” look.

As I watched their little mischievous antics, I found myself asking the same question I had been asking on repeat since you were born – “When will Josiah be big enough to run around and play like that?”  

At the Baby Gap store, it was, “When will Josiah be big enough to wear newborn-sized clothes?”  At Costco, it was, “When will Josiah be big enough to be in size one diapers?”  You get the idea.

Right then, I heard the two older women in the line next to us comment on how cute the little boys were and how it seemed like yesterday their own children were that age. Read more…

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…