He would be dead.

He was 3 weeks old when we met him... just a little over 3 pounds.

"Do you want to hold him?" She asked Joey...

"You'll be the first to hold him besides us..." 

and as she handed him to Joey....

"He has such wise eyes... he looks right into your heart."

"He's been through so much... he's such a fighter...." 

And she stood to the side as we got to know our new son.

In those 6 weeks, countless women and men loved on our tiny, precious boy...

 they loved on us, too.

After spending a week 6 hours away from home, getting to know our son, Joey had to go back to work... 

and most weekdays, I was alone;

My day would start and end at the Ronald McDonald House and every hour in between was spent with him... with them...

his first caregivers... some of the very first ones to love him... the first ones to pray over him... 

the first ones to pray for us...

the first ones to acknowledge us as his Mommy and Daddy.

They were the first to hold him... change him... talk to him...

the first to teach us how to care for him...

for this precious, tiny miracle...

they never left our side.

They helped us keep our heads above water... juggling the time we knew we had with our sweet girl...

and the time we had with him... 

not knowing how much of that time we had left.

As the weeks went by, we became family... I trusted them... and they trusted me.

I knew their stories...

and they were now part of mine.

The long shifts with short breaks... 

I was there for hundreds of them.

Take a walk... eat... get some fresh air... call their mom or their husband or their friend... read... listen to music that might break up the deafening sound of beeping monitors and crying babies...

they could have... should have... done anything with those short breaks....

but most days, they would sit with me.

I had held him for hours... skin to skin... begging Jesus to save him, to give him strength, to equip us to be his Mama and Daddy... watching monitors religiously as they put numbers on his life... terrified that today might be my last day with him, while it was really only one of my first...

and they would sit with me... making the horrifying sounds disappear within the soft words of our conversation.

They gave me purpose...

 and peace.

They gave me permission to love him... they placed him in my arms... 

they made me his Mama.

The doctors blew me off because I wasn't his 'real' mom... and she fought for me.

He needed to gain 3 ounces in order to start bottle feeds... and she knew he was ready so she added .5 ounces to his midnight weigh-in.

He needed to eat 30 cc's in order to keep the ng-tube out and be able to go home... she let me sleep and didn't stop feeding him until he had eaten it all.

He coded... and she saved him.

But they weren't just there for him....

I was cold... so she brought me a warm blanket.

I didn't want to spend another night alone... so she arranged to let me room in with him.

I couldn't do it on my own anymore... she let me cry and told me I wasn't doing it alone; that she was there with me.

I needed Joey to get there in time for rounds, but he was 30 minutes away and rounds had already started... so she changed the attending's schedule.

She trusted my Mommy instinct... she trusted that I knew him best... she trusted that my heart knew him... even though he didn't come from my body. 

The doctors told us he was going to die.... and none of them let him.

Lindsay.... Jackie.... Betsy.... Ellie.... Melissa.... Jennifer.... Rob.... and so many more.

They saved him.

I don't watch The View OR the Miss America Pageant...

I hate them both...

but since they're all clogging my news feed... and since so many of our friends and family have dedicated their lives to a profession as difficult as nursing...

this is the perfect opportunity for us to say "thank you" to every one of them...

but especially to the ones who saved our son.

And when this is your son... your precious miracle... your fighter...

the reality of who he is, of where he's been, of what could have been, and of where he is going...

 is never very far from your mind.

And without them...

without his nurses...

he would be dead.

Droopy Eyelids, Small Kidneys, & Stiff Muscles... Parenting the Child With Special Needs

Droopy eyelids, small kidneys, & stiff muscles.

A *very* basic summary of the past few weeks in our house.

There's a definite ebb and flow to life as the parent to a child who has special needs...

it seems as if weeks and weeks go by when your *normal* is just that... normal... manageable....

When the 'disorders' and 'delays' somehow disappear in the *normal* that is your day to day...

your errands, and meal times, and play dates, and nap-times, and car-time sing-a-longs.

And then the flow.

The flow....

is never a flow.

It's more like a dam bursts....

literally...

One routine follow-up... one check-up... one meeting...

it bursts your bubble of *normal* and throws off everything you *think* you know.

Our ebb is over.

Hello flow.

Three years old is tough, friends...

in the world of every toddler, it's difficult... but in the world of a child who has special needs....

it's a turning point.

The past few weeks have been full of our *normal*, routine check-ups with various specialists (we have 17), a few new follow-ups, regular therapy sessions, as well as yearly evaluations, and pre-school testing and IEP meetings.

Our flow.

Hunter is a trooper... he works hard through every therapy session, patiently follows directions for whatever specialist is examining him, and keeps himself occupied while we discuss *findings* and *recommendations*.

And those things... we discuss them as if he's not there... as if he's not listening and comprehending.

As if.

Lately, my head spends most of the day analyzing and dissecting my son's movements and actions and sounds... It's impossible not to let the words of his team of professionals slither their way in to our *normal*....

and interrupt our ebb.

So we flow...

my mind flows daily... and nightly, too... my anxiety is high as I anticipate the next meeting or evaluation, the next appointment or set of labs....

it's all consuming, this flow.

And it's so easy to think that this... this flow... is only affecting us... mommy and daddy. We're the ones who understand the implications of every diagnosis and ever recommendation... we're the ones who handle the follow ups and make arrangements for the other kids who can't come to certain appointments... we're the ones who consider what the future looks like for him and for our family while we juggle the necessary therapies and schedules to make sure he is receiving every possible resource that's available to him.

The flow.

A few weeks ago we posted a private plea for prayer on our personal Facebook pages... we were feeling desperate as we awaited lab results that would tell us if our son was in the middle stages of kidney failure. All labs we had received at that time led us to believe that his one healthy, growing kidney was failing... and when you have one kidney and that kidney fails...

the flow.

A few days later, Hunter was released from Physical Therapy for a much-deserved break... until the Fall when it will be necessary to cast his legs in order to break some bad habits he has developed that are causing his muscles to tighten...

the flow.

Two days later we sat in his Opthamologists office and heard about how his vision is excellent.... except that his moderate far-sightedness and his droopy eyelids will needs to be addressed at some time in the future...

the flow.

And then his IEP meetings with the special school district. Hunter was amazing through 3 hours of 'play' which being observed by a team of 6... OT's, SLP's, child psychologists, PT's, and special needs teachers who would ultimately determine the level of his developmental, speech, and physical delays in order to determine what resources he qualifies for in next year's pre-school program...

the flow.

In all of these meetings and evals and appointments, Hunter plays and listens and does what he's asked and does it all with such an amazing attitude.

He's 3.... so this flow.... he's not aware of it...

he can't be.

He's 3.

Hearing loss, Global Developmental Delays, operates on a 15-24 month level, non-verbal...

he can't understand... can't know...

Right?!

While Joey makes it to every appointment he can, this ebb and flow of appointments and diagnoses and testing is 'our thing'... mine and Hunter's. We do it all together... every time. We do it all together and I carry it all on my shoulders... that's my job... my privilege. And it's not easy... but it's an honor to be 'that' for him.

A few nights ago, the kids had been in bed for almost 2 hours... the house was quiet....

and then I heard Hunter cry...

it was his sad cry.

Do you know the one?

The one that starts as a sob and slowly turns into a sound that rips your heart at the seams ...

it isn't angry... or manipulative... or hungry... or 'wet'.....

it's so sad.

Before I could even respond, Joey went upstairs and held him for a while... he loves that time with his babies... he rocked him, sang to him...

"Are you ready to lay back down and go ni-night?'

"Yeah", he said.

Joey went to the gym shortly after and again the house was quiet...

the flow.

His cry was worse... it was high-pitch and gut-wrenching.

It was my turn....

and As I walked upstairs, 'slightly' annoyed that my 'job' was not yet done for the day... 'slightly' irritated that someone needed me, yet again... and more than slightly angry that Joey had gone to the gym when he did (even though he more than deserved his time!)... my irritation grew as I climbed the stairs to his room and I was prepared to pat his butt a few times, tell him he's ok and that I would see him in the morning, "I love you, goodnight".

He was standing in his crib when I opened the door and his arms went out for me immediately...

"Ok fine", I thought... "Just for a minute."

I picked him up and he clung to me as if his life depended on my strength and solitude to save him... to sustain him.

His sobs shook me to my core...

this wasn't sadness...

this was defeat.

My precious 3 year old... the one who recently consumed my every thought, whom I have lost so much sleep over, who's future I worry about daily, whom I invest so much of my time and energy into, the one who I carry all of this for....

the one whom I thought I had been feeling all of these feelings FOR over the past few weeks...

He was defeated, too.

And as I held him, the flow flooded over me...

Droopy eyelids, small kidneys, stiff muscles, casts, blood work, talking devices, 15-24 months, and on and on and on...

he had heard it all... he had felt it all...

and he was done.

He was drowning in the flow.

And so I layed down with him on my chest and I rubbed his back...

I cried as I did my best to speak life back into him...

"Hunter, you are strong."

"You are brave."

"Your life matters."

"You are so loved."

"You are not alone... you'll never be alone."

"We do this together, baby boy."

"We'll always do this together."

And I prayed over him...

"Thank you for Hunter's joy... for his life... thank you for choosing him for me. Jesus, he is so strong... please keep him strong. He is so brave and some of our days are so hard... please protect his spirit. Let Hunter feel you. Amen."

We sang 'his' song and I laid him back down...

he grabbed his blanky, rolled over, and went to sleep.

Some of our days are really hard... and it's easy for me to get caught up in dividing my time between all of my babies, managing invoices and bills, scheduling appointments, reminding children to use the words they know, trying to understand cues from those who don't have spoken words, making our days fun and playful, practicing patience, and finding time for myself and my marriage...

there are days when finding a balance is almost impossible...

And it's so easy to make these things about me....About keeping myself afloat in our flow.

My son reminded me in the most precious way that he knows... he feels... he hears (a miracle for this boy!)... he understands...

And he reminded me that we all need those words... affirmative, life-speaking words that sustain us and keep us going when that sad cry threatens to break through...

and I'm thankful for the sad cry that allowed me to speak life back into him...

because of the One who breathed life into us both.

Whoever believes in me, as Scripture has said, rivers of living water will flow from within them."

John 7:38

Another thing....

Hunter's kidney is strong... in fact, it's perfect.

And God is so so good!

2 Years Ago Today... Miracle #3; The Day He Stopped Breathing

There are very few days that stick out in my mind like today...

A day where, inevitably, at some point during the day, my heart will stop and my palms will start to sweat as my mind flashes back to a few short minutes that changed this day forever.

The day our son stopped breathing.

June 29, 2012

Recently home from the NICU... barely 5 pounds... freshly bathed...

And I didn't put him back on his heart monitor.

The day we almost lost him.

Our son... Our baby... Our fighter.

Today is a day I will never forget... would never wish to relive...

and will be forever grateful for.

The lessons learned... the memory that ends happily... the reminder to just keep breathing...

and thankfulness that he has just kept breathing.

Flashback;

I've been hanging Miracle #3 over your heads for weeks, I know... out of all 3 miracles, #3 has been the hardest for me to write. Maybe because it's so fresh. Maybe because it was traumatic.

Maybe because it happened on my clock.


Maybe because I thought I had moved on and really, I'm still hanging on.

One of the things that kept Hunter in the hospital for a full 10 weeks was his apnea. Most preemies struggle to remember to breath in their first few weeks and months of life. In the hospital, an alarm will sound when a baby stops breathing... nurses run, shaken baby syndrome is forgotten ;-), oxygen is administered, and baby remembers to breath again. If baby doesn't start breathing, it's ok... you're in the hospital!

Taking home a baby who forgets to breath is challenging. Hunter came home on caffeine... yep. It is what I said it is.... small doses of caffeine administered to him by mouth daily. The caffeine keeps his brain alert enough around the clock, to remind his body to breath. We also brought him home on an apnea monitor. A foam strap wraps around Hunter's chest and holds electrodes snug against his skin. The monitor sounds alarms for various changes in his breathing and heart rate patterns. Much like the one in the hospital, our portable apnea monitor will sound a very loud alarm if Hunter stops breathing for 20 seconds or more.

If and when the alarm sounds, we run to him... and by 'run' I mean RUN.... or pull over.... or stop in the middle of the road.... or drop the phone..... you get the point. When an alarm sounds, first we look at him... we check out his color; is he pink, purple or blue? We look at his chest; is it rising and falling? If he's blue or purple or not breathing, we stimulate him... shake him gently, tap the bottom of his foot, reposition him. If moving and stimulating him doesn't wake him up and doesn't stop the alarm so we know he has started breathing again, we call 911 and begin CPR.

It's as scary as it sounds.

In order for Joey and I to be allowed to take Hunter home from the hospital we both had to take a CPR class... and we took it twice. We had both been certified in the past but when you take the class knowing full well that what you're learning could one day help you save your child's life....well, you pay a little more attention.

Leaving the hospital, we were told that 'most' babies outgrow their apnea quickly and their monitor is only necessary for a few weeks at home.

Hunter is not 'most' babies.

Finding out if baby has outgrown his apnea is completely trial and error.... you stop their caffeine, which has a 3-5 day half-life. If there are no alarms after that 3-5 days it's safe to say that baby is old enough and mature enough to remember to breath on his/her own and the apnea monitor is no longer necessary. If alarms continue to sound after the caffeine's half-life, caffeine is started again and it's assumed that baby needs more time to grow.... and then you try again a few weeks later.

Keeping baby on his monitor is key to finding out if he has outgrown his apnea.... and I took it very seriously. Hunter was on his monitor 24/7 with the exception of when he took his bath. Awake, asleep, playing, in the car, being held... he was ALWAYS on his monitor.

We had hundreds of alarms in our first couple months home with Hunter. He slept in our room for a LONG time so he was within arms reach should his alarm sound. We used a special carseat called a Car Bed for quite a while so he was laying down in the car and not upright where his neck could fall on his chest and make breathing even more difficult for him than it already was.

He napped downstairs where I could see him at all times. Everyone who might even possibly be in a room alone with him at any time was given a mini lesson on the basics of CPR.... and the basics were posted on our fridge (and still are).

We were the ones you wanted to be around if you were going to stop breathing....

Miracle #3 has 4 drafts in my post list.... 4. As many times as I've written it out, I still can't get it right. And it's hard still, to get through it.

So... I think the best thing for me to do is to share with you the letter I wrote to Hunter in his private blog on June 29th, 2012...

The Day You Stopped Breathing

Hi Baby-Boy~

You stopped breathing today. Oh, you've done it before but today was different. Like, the turn purple, black rings around your eyes, start CPR and call 911 kind of stopped breathing.

I'll never forget today. Ever. And I pray that it will always remain the worst day of my life.

You were anxious today and more fussy than usual... I gave you a bath to calm you down. The problem with the bath is that you're amazingly calm and zen-like IN the bath but when the bath is over, all hell breaks loose.

Seriously.

I wrapped up your screaming, cold, angry self and plopped you in the swing so you could warm up and calm down. You hadn't had an apnea episode in 3 weeks so...

I didn't turn your monitor on.

I stripped the beds, started a load of laundry and thought to myself, "Finally... he's quite. I can get some stuff done."

And then I stopped. Something... someone told me to check on you. To hurry.

You were about 30 feet away from me in your swing... I turned around and looked at you...

Purple. Black rings around your eyes. Not moving.

Not breathing.

I started screaming. Loud screaming. Panicked screaming. Desperate screaming. Screaming your name.

I picked you up and I was rough... I wasn't gentle. I was desperate. I shook you... and was still screaming.

You didn't respond.


I remember thinking, "This is what a dead baby looks like."


I prayed. "God, PLEASE. PLEASE!"

He knew what I was asking.

Ms. Allison was there that day helping me with fussy you and active Big Sister. She had looked over from the kitchen and yelled, "he's purple!" She ran to us and I opened my mouth to tell her to call 911 ...



the smallest sound.



No moving... just sound.


I don't know how I heard it over my screaming.



I grabbed you and held you... tight.

It took about 10 seconds that felt like 10 hours for you to start crying... a strong cry. But you did it. I cried. I sobbed.

I handed you over to Ms. Allison..... you were safer with her.

I called your doctor. I told the receptionist to call your doctor... not the nurse, not his voicemail, THE DOCTOR. "Go get him yourself if you have to.... I need to talk to him RIGHT NOW." She paged him. He called me 2 minutes later.

We started your caffeine moments later and upped your dose I promised to keep you on your monitor.

I didn't have you on your monitor.

Me.

The thing is, Baby Boy.... 5 more seconds and I wouldn't have been able to wake you up.

But 5 seconds sooner than too-late God told me to check on you. He didn't push me or scream like  I did... He told me. Gently. And I listened.

Thank God I listened.

I know that I have to get past the blame game... Your Daddy, Ms. Allison, your doctor... everyone has told me I didn't do anything wrong but I did... I didn't put you on your monitor. That's just the truth. I knew better.

I'm working on that part.... but there's one thing I can't I can get past;

That... what happened to you... that's SIDS. Parents who finally have a chance to get things done, realize their baby has been quiet... too quiet... and it's too late.

5 second too late? A minute? An hour?

I know they ask those questions.

I read their blogs.

I've wondered so many times since bringing you home why EVERY baby can't come home with a monitor.

'Autopsy is inconclusive.'

'Reason for death unknown.'

"If I had only checked on him a few minutes earlier... would it have made a difference?"

"I never should have let him sleep that long."

I know those mamas and daddies ask themselves those questions...

I'm so thankful that I don't have to.

But my heart hurts for those mamas and daddies... because today could have ended so much differently than it did.



Baby-boy.... I've never met anyone quite like you. I've always believed that God is capable of performing miracles.... not just Bible miracles but today miracles. I know I've witnessed them... but never like this. Never like I have since God brought you to me. You're a miracle over and over again.... your life, your story, your growing testimony.... miracles.

You have wrecked me. In the most beautiful, scary, miraculous, terrifying way, you have wrecked me.

I refuse to worry about you, sweet boy because God has you so firmly held in His powerful grip that nothing can get to you.

He held you today and he'll continue holding you... just like He did today.

Just breathe, Baby-Boy... Please just breathe.

I love you more than life itself,

~Mama

Miracle #5- This boy was born with a fatal heart condition.....

(The title... isn't that 'in' right now?! So sorry... I couldn't resist, but you really won't believe what happens ;-))

If you're new to Hunter's Story;
Miracle #1
Miracle #2
Miracle #3
Miracle #4; Part I  and Part II 

I remember fragments of that first phone call... 

"2 pounds... Hydrops Fetalis... heart anomaly... brain bleed... kidney failure... liver failure... metabolic disorder... Cerebral Palsy..."

and so much more.

The truth? None of it registered.... the only thing I heard?

"He needs a family.... he's your son."

I've mentioned before...

So many people thought we were stupid... how could we voluntarily 'sign up' for a baby who had so little hope for a future? He was broken... and in medical terms, broken beyond repair.

I'd like to say that our faith was strong and we knew, even then, that God would heal him... would give him a future... that he would celebrate turning 1 year old... that he would walk... and run... and talk... that one day, he would even recognize us as his.

His family.

But i'd be lying if I claimed that our faith was strong or that we firmly believed that God's plan for him was greater than the hundreds of pages of death sentences in his medical records.

All we knew was that we were a family that was aching for the one who was missing...

and he was a baby who was fighting for his life... without a family.

And so it made sense to us... and we went.

We walked into that tiny NICU room, blinded by the darkness of the hallways and deafened by the sounds of life support and heart machines. Those sounds represented life... and also death. 

As we neared the very last pod... the one that held a precious, 3 week old baby... what we didn't know was if the sounds that grew louder as we grew closer represented life... or death... for the life struggling within it.

Those moments are nestled in a part of my mind that registers so vividly that I believe it all happened just yesterday.

His primary doctor sat down and asked us to listen carefully as she tried her best to 'explain' the tiny baby who was now staring deeply into my husbands eyes...

She explained about his brain bleed... the discrepancies in the size of his kidneys... the dangerous levels of biliruben in his liver... the damage done to his intestines and muscles by the fetal hydrops... how his prematurity and low muscle tone put him at huge risk for developing CP... how they already believed that he HAD CP... his irregular heartbeat and the measures they had to take moments after birth to fix it... the repercussions of the measures they took to save him... the dozens and dozens of medications he was currently on and would soon be on... how long she believed he would remain in the NICU...

and how she honestly believed that he might never leave.

His heart condition... the one they knew he had in utero... and the reason they were surprised that he made it through delivery at all. How they hadn't really planned to have a baby to revive... to save... after delivery. How the NICU team was in place in the OR "just in case" they had a baby to help. She explained how broken his heart was... that he was facing numerous surgeries by the time he was school age... if he made it that far. How his activity would have to be limited as he got older... how difficult that would be for the parents of a boy... no sports or running. 

It was terrifying.

Only moments before, as Joey held this precious baby boy in his arms, we had exchanged 'the look'. The one that secured this baby's place in our family.... in our hearts. 

It had been decided.

He was ours.

But as her explanations grew longer... as her description of his 'outlook', of the kind of life he would lead, of the number of open heart surgeries he would have and how those surgeries would only buy him time, not a life... it was his heart that caused us to pause...

caused us to rethink.

Because that's the thing about adoption, friends... it's so nice to think that your baby has been chosen for you and that you really don't have a 'choice'... but you do. You do get to 'choose'... sometimes, you get to say 'yes' or 'no'.

She walked out of that tiny corner room and left us to 'discuss' what we would do...

but we didn't discuss anything.

We started at him... memorized him. We marveled at how such a tiny baby could be stronger than either of us could ever hope to be. We watched him breathe... realizing what strength and effort it takes for our bodies to just breathe. We noticed that his eyebrows and eyelashes hadn't grown in yet, he didn't even have nose hairs, his fingernails and toenails were there but they were different... they were too new, his movements were mechanical... not intentional, his eyes...

his eyes.

They were wise. They knew something that we didn't...

and that's when we knew;

We wanted to be the one's who were around long enough to find out what.

For however long that might be.

We knew that we would never be 'ok' with knowing that his life would be short... never knowing how much longer we had with him. But we also knew that we would love every second we did have with him... and if we had learned THIS much in the few minutes we had spent with him, then we couldn't even imagine what more we were going to learn from him.

And all he needed from us... was love.

And we could do that... so we said 'yes'.

But that heart...

It was the one thing that was definite... they could transplant a kidney or a liver, vigorous PT could help with the CP, hearing aids could help with hearing loss, surgeries or medicine could help the brain bleed, an apnea machine could help us at home... 

but the heart; surgery could buy him some time... but it was the one thing that couldn't be fixed.

It was definite... but it was a ticking time bomb.

Literally.


(If you're unfamiliar with Hunter's Story, now is the time to catch up... 
Miracle #1
Miracle #2
Miracle #3
Miracle #4; Part I  and Part II )



Especially Miracle #2.



But then, last year our baby boy turned 1...

And he wasn't supposed to.

Hunter's cardiologist follows him closely....

his irregular heartbeat, a displaced tricuspid valve, a leaky valve...

they're all there.

They've been there.

Never cause for immediate alarm...

still, haunting.

I took Hunter to his usual, routine check-up with his Cardiologist last week....

It was business, as usual....

These appointments always go the same way; EEG, heart ultra-sound, physical exam, discussion of the day's findings, 24 hour holster monitor is put on him, and we go home.

This visit...

was different.

After Hunter's EEG, the nurse left the room... without a word.

My heart started to pound... I was sweating...

the walls were closing in.

Hunter's doctor walked in... finally.

She listened to his heart... with him standing up... and then laying down.

She walked to the computer and pulled up his EEG...

she wrote something down.

I felt the walls closing in...

something was wrong.

"Is something wrong? I'm getting nervous..."

She sat down and wheeled her chair closer to the table where Hunter and I were sitting...

"I'm so sorry... It's not my intention to scare you."

She was quiet... gentle.

"I wanted to be sure I had all of the information I needed before talking to you..."

Here it comes...

"I looked over Hunter's EEG and compared it to the one we did a few months ago... I considered doing another ultra-sound, but after listening to his heart myself, I am confident when I tell you that....

Hunter has...

completely normal cardiac function."

.......

"He has .... what?"

.......

"I know it's hard to understand... it's hard for me to understand, too but this is Hunter, after all. I want you to know that I would never say something like this if I wasn't 100% certain of what I was telling you. And I am 100% certain that Hunter's heart is functioning just as well as yours or mine."

......

"His heart... it's... normal?! What about his tricuspid valve and heart surgeries? The leak? Sports? He wasn't supposed to live and...."

.....

"I know. And you're right... those things were all true. From a medical standpoint, this is a phenomenon. Impossible. But we know Hunter... and we know the miracle that he is. His heart is normal, Mrs. Smith. That's all I know for today. I'll see him again in a year. Enjoy your son, Mrs. Smith... he's going to be 2 years old next week! And he'll have so many more after that."

.....

She hugged both of us... but held onto Hunter for just a little longer. She smiled as we walked out and as the door closed behind us, I heard her whisper to the nurse...

"He amazes me."

And though I knew that the doctor in her was referring to my precious boy, our miracle..

I knew that the real her was talking about our Jesus.

........

The past 2 years have been a roller-coaster of ups and downs... unknowns, mixed in with the promises and truths that Jesus has planted firmly in our hearts.

These 2 years have consisted of emergency room visits, moments when we all needed reminders to breathe, therapies of every kind, CPR, Heimlich Maneuvers, asthma treatments, ear tubes, hearing aids, viruses we thought would never end...

first steps, climbing in drawers, throwing balls, running, tantrums, eating sheet rock, eating dog food, eating... everything, wrestling, learning to talk....

And last weekend we celebrated Hunter's 2nd birthday...

another one that never 'should' have been.

With his 2nd birthday, we are reminded that the miracles that explain Hunter's life are no longer what define him...

because he craves human touch, relaxes when a warm cheek touches his, thrives on routine and predictability, loves doing everything that he shouldn't, thinks that no one can see him if his eyes are tightly shut, loves to walk sideways or backwards or in circles, can pin his daddy on the floor, thinks that the word 'meatball' is hilarious, idolizes his big sister and craves her attention, does something silly and looks to her for the first laugh, always makes sure mommy and daddy know when he does something well, thinks that Princess Sophia is cute, has the most contagious laugh, and has a smile that can brighten anyones day.

That... is our son.

Hunter.

Our fighter.

No miracles would have been fine... the boy with heart and liver and kidney and hearing and muscle and speech and brain challenges... would have been a blessing.

This boy? These miracles?

We are honored that God chose us to be this boy's forever Mommy and Daddy.... we are underserving... and more than thankful.

And regardless of how God chose us to be his Mommy and Daddy, I'm convinced that the real match was made between a big sister and her little brother... 

His protector from day 1...

Happy birthday, precious boy... you have stolen our hearts and have changed lives! 

You are truly On Loan From Heaven.. we're just glad we get to keep you for a little longer than a while ;-)

A phone call… “He’s tiny, just 2 pounds…” What exists in my memory now is fragmented; Heart… kidneys… liver… brain… lungs… short life… needs a family… tomorrow. So we went… nothing to guide us but blind faith. Some people would call that stupidity. We just felt called.

In my arms, the baby boy we had met only a few weeks earlier; born too soon, stronger than I could ever hope to be, and the one who had turned our world upside down in that short phone call.  Brown hair, wise eyes, easily held in one of my hands. His name always uttered in the same sentences as ‘miracle’ or ‘fighter’. And he was. He was fragile and sick, helpless and damaged to the rest of the world. To us, he was solid and strong, whole, with a life that was full of purpose… no matter how long that life would be.

His footsteps echoed down the hall. A doctor’s shoes sound different than anyone else’s shoes… and they bring with them the power to make or break you. Their faces, too; the stone-cold ability to make anything look and sound okay. But it’s not always going to be okay.

This time, nothing was okay.

Blood work, tests, ultra-sounds and MRI’s… all leading to one short sentence that carried with it his future… and our hearts.

“Your son will die soon. I don’t know how much longer he has or if he will ever make it home but I want you to know now so you can make plans. There’s nothing else that we can do.”

In the haze of heartbreak, questions I couldn’t voice, and with the almost weightless, but living body of my son lying in my arms, one word echoed in my mind… it’s sound was deafening.

Plans.

Panic set in. It was one of those moments when the walls close in, your line of vision narrows, and all you can hear is the screaming in your heart and mind. Plans?! How in the world do you 'plan' for your child to die?! How can I possibly make plans without my baby?!

And in the midst of my panic, the word echoed again. This time, its sound was almost as silent as my son’s body was almost weightless. This time, the word came from somewhere else… from a place so deep inside of me that when it speaks, I know to be still and listen to its wisdom.

Plans.

“For I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

And in the impossible quiet in the far corner of the NICU, my head cleared, my mind hushed, and my heart listened. Our futures, our stories, have already been written... and they weren’t written by a NICU doctor, or the executives at work, or the pastors at church. Our stories were written by the Great Physician, the CEO of our existence, the greatest story-teller and prophet that ever lived. Damage simply cannot be done to God’s plan.

The word swirled around in the narrow haze of darkness until it settled snuggly in a part of my heart that has been forever changed.

Plans.

Rooted in my heart is the knowledge that God’s plan is perfect even amidst our imperfections, amidst the damage that has been done to us… from birth, through tragedy, or by the choices of someone else. In a fleeting moment in time, circumstances and opinions often cloud what our hearts know to be true…

We can always find hope in Him… even in the most hopeless moments of darkness. He won’t harm us... Even when it hurts. We do have a future… and even if it’s physicality is short, it’s eternity is forever.

It’s never safe to assume that God’s gentle and encouraging whispers will always cover the inevitable panic and chaos that is this life. They creep in and try their hardest to persuade you to yield to the noise and fear. Being still… listening… quieting the turmoil that surrounds you, that tries to convince you that the damage is done… things I’ve had to learn over and over again since the day I sat in the corner of the NICU, crying out to God, holding a life that he created perfectly in my arms.

But that day? The day that started the end of his life? That day was almost 2 years ago. Today, our son, our fighter…. He’s strong and determined and healthy. He’s our walking miracle. The damage that was done to his body is still there but what came next, what’s still coming, is more powerful than any damage that could ever be explained by any doctor…

Healing.

There are days when the damage is done- When life simply can’t hand you anything more because you’re already so broken. Our hope lies in knowing that physical damage is never permanent; totaled cars are recycled for parts, broken bodies are put back together, lies told are always uncovered, shattered souls find hope, lives lost find eternity with Him.

That day … the damage didn’t come in the form of sickness or death and the real damage wasn’t done to our son. The damage was done to our hearts and to our faith and to our purpose, and it was done in the most beautiful and miraculous of ways.  We are forever changed; forever trusting in His plan that is perfection … regardless of whose shoes are walking down the hall, whose face turns the corner, and what tragedy lies ahead. We can try and fail, believe and be disappointed, or dream only to wake up… these things, in this life, in His plan, will be okay. Healing can be found and damage simply can’t be done to God’s plan.

When routine doesn't feel so routine...

Hunter is scheduled to have his 3rd sedated hearing test tomorrow morning.

 

It's just a routine test.. but they never feel 'routine' to the Mama.

Hunter's has had his hearing aids since May (if you haven't seen his video... WATCH IT!)  and tomorrow will be his first ABR since then.

An ABR (Auditory Brainstem Response) can be done in an Audiologists office... for the 'normal, quiet child who will sit still for 2 hours while electrodes and plugs are placed in and behind their ears'.

Have you ever had one of those?!

If so, I don't wanna hear about it.

Hunter is NOT that child.... thankfully!!

He's a wrestler... he's a yeller... he's easily distracted... he's BUSY! He does NOT sit still... or take a nap in my arms for 2 hours... or tolerate anything but his hearing aids being stuffed in his ears.

When this ABR was first mentioned it didn't take long for me to refuse the in-office ABR... I'd rather not put Hunter, the doctor, and myself through that inevitable h**l.

So... here we are. I hate the thought of sedating my baby... again. I know it's 'routine'... I know it's absolutely necessary... and I still hate it.

Forget not eating for 12 hours before ... forget how early I have to wake him up...  forget watching a nurse walk away with part of your life...

it's signing the papers, acknowledging the risk of death, and releasing anyone of responsibility... it's the hardest part.

'Routine' just doesn't feel so 'routine' when your pen hits that paper.

Hunter will be fine. I know this. How?

 He's a wrestler. He's a yeller. He's easily distracted.

He's here.

But Mama? The verses will rotate in my head and what I know will fight to stay at the forefront of my mind... but part of my heart will be missing for 2 hours until my baby is back in my arms.

It's not about me... please don't get me wrong.

But these things just don't get any easier... for any of us. And tomorrow, I'll be doing it alone... 'routine' doesn't accommodate work schedules as often as 'routine' happens around here... and big sister gets some one-on-one Daddy time tomorrow morning before school :-)

Once again, I'm going to ask you to pray for Hunter's test tomorrow... for his breathing to remain stable and his airways open (my biggest fear)... for him to go to sleep and wake up easily... for the nurse who will walk away from me with him... and for the technicians who will be in the room with him. Pray for his Daddy who will be fighting this distraction while he's in meetings all morning. Pray for his big sister... she's pretty clueless but she deserves a good day, too ;-) Pray that Hunter won't sense my anxiety but that his morning will be as calm and as 'routine' as possible.

At the end of the day, we'll know how well Hunter's hearing aids are helping him, if they're set at the right thresh-holds, and how we can proceed from here in helping him fill in the missing pieces of his hearing loss...

It'll be a good day... just a long one ;-)

I haven't posted an update for you lately on Hunter's progress and I think the video I captured today during speech therapy sums it up pretty well...

And everyone needs a little bit of Hunter's laughter in their lives ;-)

As Hunter gets used to new sounds and continues learning how to understand the new words he's hearing... as we work with his AMAZING therapist to teach him how to follow directions and put words with objects... once in a while, a word or phrase will tickle his ears... and the sound that comes from him is contagious... the best sound in the world!

Listening to this boy... who never should have lived, none-the-less crawled or walked or talked... listening to him understand words and find them funny... it's music to my ears.

A miracle every single time.

Did your day just get a little better?

He does that to people :-)

I'll post an update tomorrow... and probably a picture or two of our sleepy boy!





 

 

A Hunter Update.... "Your Son May Never Walk..."

(If you're new to Hunter's story and the miracles of his life, please start here and then head over here)

10 weeks premature.

Hydrops.

Resuscitation at birth.

A fatal heart condition.

Cerebral Palsy.

If the heart condition didn't kill him, a rare metabolic disorder that would.

If you know Hunter's story, you know that this list has changed significantly over the past 18 months... Hunter's heart condition is gone and he doesn't have CP or a metabolic disorder. Hunter's miracles.

I know I've said it before but... we were ok with that list.

Yes. It's a scary list. Yes. In a way, we signed up for it. Yes. We were terrified.

But our fear... it wasn't for us. It was for Hunter.

The lessons we've learned over the past 18 months... the numerous ways we've been stretched and challenged and tested... are life-changing.

The miracles God has preformed in the past 18 months... the one's He continues to shower down on our son... are life-giving.

I have never known someone as hard-working, as determined, and as hard-headed as Hunter. His work ethic would be considered unheard-of for a middle-aged, successful adult. His determination and his fighter instinct are why he is alive.

You see... when your life begins as Hunter's did, nothing comes 'natural'. That word just doesn't seem to exist in his world.

Eating never came naturally. Sucking on a pacifier never came naturally. Rolling over and sitting up never came naturally. Crawling? Pulling up? Squatting? Going from crawl to sit or sit to crawl or crawl to pull up or pull up back to sit or ...

everything he 'shouldn't' have ever been able to do....

they didn't come 'naturally' to him.

We have seen him work for every single thing that he does; from breathing.... to sucking on a pacifier.... to breathing and sleeping at the same time... to using a bottle... to breathing and sucking from a bottle at the same time... to holding a bottle... rolling over... sitting up... crawling... using a spoon... chewing... pulling up...

The effort it takes, the amount of time his amazing therapists spend with him, the painful crying when his body fights his will to learn and do better...

When he succeeds?

I've never seen such joy... so much unashamed and well-deserved pride... on someone's face.

The thing about Hunter?

He always succeeds.

Every. Single. Time.

He has help, yes... from us, our family, his therapists... but his will, his hard-work and determination are what get him there....

where no one ever thought he would go.

And, friends... he's going places....



Just 18 months ago, only moments after meeting our son for the first time... completely overwhelmed and intimidated by the 3 pound precious baby boy in front of us... was the first time that we heard, "Your son may never walk or play sports and his activity may have to be limited, which will be hard for a little boy. If he does ever walk, it will be a struggle."



 I've learned that miracles can't be defined by something super-natural.... sometimes we have to physically fight for them. And maybe it's not the end result that is the miracle, itself... maybe the miracle is the determination we have to fight, that can only come from something super-natural; from our Heavenly Father.

I don't have the strength and determination that my son has. I can't help but think that I would have given up a long time ago if I ever had to go through even half of what he has. Hunter fights for the 'natural' part of his life every day. The biggest lesson he has taught me? He's taught me that miracles never come out of our fear.... but often, they do come from our willingness to fight.

I spent time just watching Hunter walk today and was completely humbled by the miracle I saw in front of me.... he is a walking miracle ;-)



Hand Chosen

This was my mom's license plate throughout my childhood.....

 

 

California had just made 5 shapes available that you could incorporate into a personalized license plate. I remember so many family conversations as we all tried to agree on what our new license plate would say and we knew it had to be meaningful... a conversation starter!

 

Hand Chosen

 

My parents had a few reasons for choosing Hand Chosen...

 

* The 'hand chose' the car (boring, but true!)

* Each finger on the hand represented each of us

* Our family existed because God 'hand chose' my brothers to complete that hand

* Eric and Brayden's birth moms 'hand chose' us to be their family

* God 'hand chose' every one of us to be HIS children

 

It's just a license plate. Yes. The meaning behind it.... and the process my family went through to create it.... has stuck with me for 23 years.

 

On Monday, I had the opportunity to share our family's story with some friends.

 

Each time I tell our story, I come out of it feeling extremely overwhelmed.... and intensely humbled.

 

I relive every emotion.... the fear, nerves, defeat, heart break that came through the adoption process..

 

 awe, disbelief, amazement and thankfulness when our babies were finally home.

 

I love those moments. I live for them.

 

Each time I tell our story, a different part of it follows me through the next few days... God highlights a different piece each time and gives me an opportunity to bathe in it, to feel it all over again, and to truly thank Him and give Him glory in the story that He has written.

 

Monday~

 

I got stuck here. Specifically....

 

"We had just said "no"... again. I was desperate for direction... for something."

 

and...

 

"The agency hadn't put any effort into matching Baby boy with a family... how can you when his chances of survival are so small?! D said she had spent hours the night before pouring over the agency's family profiles... she needed to find a family who was 'open' to heart problems, prematurity, low birth-weight, a condition as complex as Hydrops, and the list was growing and would just continue to grow. She also needed to find a stay-at-home mom... it was stressed that Baby boy would need continuous medical care and constant stimulation to ensure as much of a future as possible for him.

 

She had no families that fit the bill.
 
None.
 

I interrupted her...

 

"D... what if...."

 

Her turn to interrupt...

 

" I think he might be your son."

 

 

This conversation took place in a hotel room. In Florida. We had spent 3.5 hours the day before getting to know the sweetest woman who was due to have a baby boy in June. She had chosen us. Everything about this woman, her baby boy, the relationship we had started, and the future we saw with her fit our bill. It seemed like a perfect match.

 

Healthy pregnancy. Healthy mom. Healthy baby. Open adoption. The foundation to a great relationship.

 

But something didn't feel right. We didn't know what.... we had ZERO reasons for why we said 'no'. ZERO. ZILCH. NADA. NONE. But our hearts were just saying 'no'.

 

And then the phone call....

 

"In late March, a baby was born... he was delivered by emergency C-Section because the doctors were having trouble keeping his heart-beat stable and rhythmic. As a result of the efforts they made to control his heart-beat in utero, he developed Fetal Hydrops (his body began to swell with fluid and that fluid was pressing on his organs).  He was delivered at 30 weeks gestation... delivery was more of a precaution for his mom because of how his conditions were affecting her. Baby boy wasn't expected to live through delivery."

 

Very very sick baby. No previous relationship with his birth mom. Thousands of questions and ZERO promises for our future with that baby. ZERO. ZILCH, NADA. NONE.

 

But, even with a perfectly healthy baby boy at arms reach.... we said 'yes'.

 

At this point in our story, most of the time someone will say something like, "You guys were so brave!" "Most people would run the other direction." "I could never have done that."

 

But we weren't brave.... we wanted to run... we were TOLD to run by many people.... and, if you had asked us only 12 hours before, we probably wouldn't have done it either.

 

Here's where I've been since Monday...

 

 

 

We didn't fall in love with Hunter when we heard about him over the phone. We cried for hours as we poured over his already-intense medical history documents. We felt physically ill with fear when we Googled so many of his conditions and the possibilities for his future. We wondered if the people who cautioned us... who were concerned for us AND for Hannah.... who told us we were making the wrong decision to go meet him.... were right. 

 

But still....we did. We went through the motions... we pursued yet another opportunity God had given us. Our hearts fought tooth and nail the whole way.

 

But God pushed us.

 

And then we met him.

 

And we said, "yes"....

 

To all of it.

 

I don't know why we said yes! Looking back, I SEE why friends and family were concerned for us. I totally GET where their cautions were justified.

 

And I am so thankful that God blinded our minds and deafened our ears so His plan could prevail in our hearts.

 

A conversation I have with God quite regularly...

 

"God, we were okay with the possibilities. We were ready for each prognosis and every trial he faced. We had fully embraced every medical concern and every possible outcome... from a forever-long feeding tube to Cerebral Palsy to major heart surgeries (many of them!) to accepting that our child might have a very very short life. If that was your plan, then we were ok!

 

But, God... here we are. Our son's appetite matches his activeness! His muscles are strong! His heart... our son's heart, is healthy! And he will grow old one day!

 

So why?

 

Why were we so comfortable and ready for all of the above... why did you prepare our hearts in that way....but you chose this for us, instead?"

 

I've never been one to ask God "why?". Ever.

 

And obviously this 'why' comes with an unbelievably grateful heart for everything He has done in our son's life.

 

And that's part of the answer....

 

Hunter's life. IS WHY.

 

He spared Hunter from every obstacle that we were 'ready for'.

 

At times I feel that He spared US... but He didn't. Every single caution and possibility could have come to fruition.... and WE'D be ok!

 

Hunter?

 

God has given him a life that will be full and fast and long and joyful.

Part of the answer lies in the changes that have taken place in OUR lives... we've learned patience and what it means to fully and truly rely on God... regardless of our human thoughts or feelings. Hunter's story has brought out the passion Hannah has for special kids like Hunter... he is her heart.

 

Most of the answers, tho reach far beyond US and HUNTER....

 

The miracle that is Hunter's life couldnt' be a miracle without the journey he went through... without every 'maybe' and 'possibly' and 'could be'. Hunter's story has already impacted thousands upon thousands of lives. He has brought people closer to Jesus. He has brought US closer to Jesus.

 

But when I think about my "why's", I know they come from a place in me that feels undeserving of the life we HAVE versus the life we were 'ready for'.

 

"Even before he made the world, God loved us and chose us in Christ to be holy and without fault in his eyes."

~ Ephesians 1:4

And the simplicity has stopped me in my tracks.
 

It was already done.

 

He chose us.

 

And there's my answer...

 

He chose Hunter for us. He chose Hannah for us. I don't think our family is done growing yet.... if there is more for us, He's chosen that, too. He chose us for them.
 

And he chose us for HIM.

 

Hand Chosen.

 

God's perfect love.... strong enough to push through every 'maybe' and every 'could be' and every 'probably'.

 

I will devote every day of my life to remembering that one simple phrase.

 

And I will do everything I can to instill that one simple phrase in my children's hearts....

 

so when their heads get in the way of their hearts...

 

They will always know....

 

They are hand chosen.