The sweet little lady at the pharmacy.... and why I want to punch her in the face

We're pharmacy frequent shoppers...

it should be a club.

Between 2 asthmatics, one puking pregnant mama and whatever else pops up throughout the year, here's a typical phone call with our local pharmacy...

"Hey "insert name", it's Lindsay... can I get "rx name" filled for Hunter, please?"

"Hi Mrs. Smith! Sure! Give me 10 minutes!"

No last name needed... no birth dates... nothin.

And I'm ok with that! These kinds of phone calls make my life much easier ;-)

Our pharmacy is part of a large chain 'drug store' that you've probably heard of.... there's probably one less than 1.3 miles from your house, in fact... on every corner.

When I combine rx pick-ups and personal care/ necessities in one trip, I like to check out at the cosmetic counter...

those girls always have coupons.

Did you know that?!?! They do... always. 

Anyway, one woman has been working at our cosmetic counter for as long as we've lived here... 8+ years. She's slightly older... a gramma, maybe? She's tiny and looks so distinguished when she slips on her tiny glasses in order to read through her coupons. She has huge giveaway baskets every week that are chalk full of super-cute body care and perfume samples and every time you check out, she enters your name in the giveaway... I've filled out thousands but have never won. But I'm not bitter. At all. Her hair is gray and she wears it in a cute top knot... 

actually, I think she invented the top knot. Pretty sure.

She always chats with my babies when we're shopping... asks Hannah about school, does her best (along with the rest of the store) to distract Hunter from the fact that he's stuck in a shopping cart (it doesn't usually work), and chats with me about her 'usuals' or the small town gossip. She's sweet.

Until it's time to say 'bye-bye.'

Our newest thought is that Hunter has some form of speech apraxia... a disconnect between his brain and the muscles in his mouth. He follows directions perfectly (correction... he CAN follow directions perfectly... but sometimes chooses not to... like his mama... or daddy ;-)), his receptive language is strong, his understanding of his surroundings and the role he plays is flawless.... you can physically SEE him forming thoughts and words in his mind... but he can't say them.

Yet.

His hearing loss compounds things slightly and we're working so hard with lots of speech therapy and we're all beefing up our sign language skills... but he gets frustrated. We do, too. He wants something and can't tell us... he got hurt and can't tell us... he wants to play with you but can't tell you... 

He can bring you a book and you know he wants to read... he can sign 'water' and you know he's thirsty... but if you're in the car and can't see him or aren't looking at him at the time, his ways of communicating are minimum.

We see his frustration the most when we play with other kids his age...

he knows he's different.

And it's one of the hardest things we've ever had to watch.

Our determination is as strong as his... helping him find ways of communicating while his language slowly develops is our full-time priority on a daily basis.

Our cosmetic counter lady...

She always says 'bye-bye' to my kids... 

sweet, huh?

She waits for a response every.single.time. Hannah will politely say 'bye' and sometimes Hunter will wave... but that's not good enough for her...

She wants the words... and every.single.time she says "bye-bye" and he doesn't say it back, I can sense her judgement.

and yesterday, I wanted to punch her in the face.

"Isn't he 2 years old?"

"He is."

"Ooooh."

Sweet gray haired lady, meet my fist.

"I don't owe her an explanation... and if I were him, I wouldn't say 'bye-bye', either!"...

My first thoughts upon quickly leaving storming out of the store.

Judging... MY KID.

How dare you.

And then my sweet neighbor of 8 years passed away...

and we didn't know that she had been sick.

We've seen her plenty of times over the past year, walking her dog or gardening, and she had lost weight... she looked amazing! And I told her so each time I saw her...

"I see you out walking all the time... you look so wonderful! Your hard work is paying off!"

And then she died...

from cancer that she's been fighting for a year.

From a cancer that had slowly been wasting her away for a year.

She never told me...

And even though my 'judgements' felt helpful and encouraging at the time... now they sound inconsiderate and cruel.

She was dying.

And I told her she looked amazing.

Sheesh.

Judgements.

I won't tolerate judgements made on my children... and I'm not above punching you in the face (ok, figuratively), should you insult them.

But maybe I DO owe her an explanation...? 

"His speech is delayed a little but he's learning! Keep saying 'bye-bye' to him and one day soon, you'll get one back!"

A simple explanation.

I sure wish my precious neighbor had given me one... and I'm sure going to miss her :-(

I stopped in to see her sister yesterday evening...

"Why didn't she tell me?" I asked.

"She didn't want any special treatment." She said.

Would I have treated her differently, had I known? Maybe. Maybe not. But I would have understood...

And that is more valuable than anything.

Maybe I'll offer up an opportunity for understanding before I punch anyone in the face...

"Ask yourself what you want people to do for you; then grab the initiative and do it for them!"

~ Luke 6:31

He's already the best big brother :-)

A Guest Post: Surviving Plagiocephaly and Brachycephaly

A few months ago, I was contacted by the team who works for Sarah over at the Baby Flat Head Syndrome website... they had run across Hunter's journey with his DocBand and asked me to write a guest post in order to help them raise awareness for Plagiocephaly, Brachycephaly, and other forms of 'flat head syndrome' in infants.

Sarah is doing an amazing job at raising awareness for what she calls 'baby flat head syndrome'... and if you know us at all, you'll remember our own 'baby flat head'...

Remember him??

I barely do!

Sarah's biggest goal is to decrease the number of infants who have to be treated with bands by providing new parents with all of the information they need about the importance of tummy time, new pillows that help decrease the chances of 'flat heads', and by describing in amazing detail exactly how bone structures change when a baby's head starts to flatten... like our sweet boy's did; 

I was so honored that she asked me to help her with such an important cause and with something that is so close to my own heart!

Head over to Sarah's blog to read Hunter's story and be sure to leave her some love, too... and if you know anyone who is expecting a baby or who has an infant, please click 'share' and help Sarah raise awareness!

Sarah~ Thank you so much for all you're doing for this generation of precious babies... and thank you for the opportunity to share our own story that is so close to my heart!

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 ;-)



Our Fighter

I remember so many nights .... I would leave the NICU to head back to the Ronald McDonald House.... and I would barely make it through the NICU doors before I broke.

The NICU changes a person forever. A parent with a child in the NICU experiences emotions that you can't describe in words.... feelings you never want to feel again as long as you live.

I would walk silently to my car, praying the whole time....

"God............... Please............."

And I just knew that He knew.... He knew the words I couldn't think or speak or feel.

And every time I got in my car to head back to my home away from home, leaving my baby behind to continue fighting for his life, one song always greeted me...

Many of you have asked for an update on our sweet boy since he got his hearing aids. I've drafted a few updates but nothing comes quite close enough to the video my brother took a few weeks ago.... matched with the song that became my anthem during the most difficult time of our lives, here is our son....

our fighter.....

Give 'em hell, turn their heads
Gonna live life 'til we're dead
Give me scars, give me pain
Then they'll say to me, say to me, say to me

There goes a fighter, there goes a fighter
Here comes a fighter
That's what they'll say to me, say to me, say to me
This one's a fighter....

(My brother has been gifted with an amazing talent and has video-taped some of the strongest, most precious kids I've ever seen.... head over here to see a few more of his incredible videos!)

"Faith comes from hearing, and hearing comes from the Word of God."

"Faith comes from hearing, and hearing comes from the Word of God."

Romans 10:17

 

Our son can hear.

When I pulled out my phone to video tape Hunter's first few moments with his hearing aids in place, we were warned by Hunter's Audiologist that most of the time, babies don't have an outward, visible response to sound when their hearing aids are placed. She said that sometimes they get over-stimulate and cry but hardly ever do you see an obvious change... it's more of a gradual process as they get used to new sounds.

She was just as amazed as we were ....

And I'm SO glad I had my phone!

 

His eyes opened wide, his body stilled, his breathing steadied, and he listened.... really listened. 

 

 

 

It turns out, we're pretty funny!

 

We spent Hunter's first day of hearing by making lots of noises... and singing lots of songs!

 

 

 

Hunter started Sound Therapy today... we aren't wasting any time introducing sound to him, labeling various noises, and getting excited about the smallest of daily sounds. He's been alert and very aware of who is around him and where sound is coming from... it's been amazing to watch him take in so much in just one day!

 

Knowing for a fact, that for the very first time Hunter is hearing every single sound is an overwhelming feeling.... and if it is for me, I know it is for him. He's handling it so perfectly and we are so proud of him!

 

Our biggest prayer now is that Hunter's language will start to develop quickly. He is completely caught up, developmentally and his only delay right now is speech. He's a quick learner and with his big sister around, I just know he'll be a chatter-box soon enough :-)

 

I'm ready to hear this boys voice now!

 

Our son can hear.

 

And God is so good.

One Must Breathe... In Order to Hear

We've been quiet lately...

 

and Satan has been at work.

 

Our sweet boy has had one heck of a month.

 

Yesterday morning we celebrated Hunter's ONE YEAR home-coming anniversary with some yummy Dunkin' Donuts....

 

We spent last night back at the scene of the crime...

 

 

 

We spent one looooooooooonnnnnnnngggggggg night in the hospital, desperately trying to help our sweet boy control his breathing.

 

He just couldn't stand celebrating his home-coming anywhere but... there :-/

 

Hunter has asthma.

 

That's not news to anyone.

 

We've called for the help of 911. We've rushed to the ER. We've screamed and yelled and fought tooth and nail to be sure that our son is safe and cared for and.... breathing.

 

Breathing has always been a 'hurdle' for him and it's one we will continue to overcome time and time again.....

 

But so has hearing.

 

So last night we spent the night at the hospital, terrified that somehow, someway Satan was going to find a way to cancel the appointment we've been waiting for....

 

the one that's tomorrow morning at 9am...

 

the one where we will walk out a large set of double doors with a very tiny set of hearing aids.

 

He tried really really really hard to cancel that appointment.

 

 

But he didn't.

 

Do you wanna know something?!

 

In every situation, in every single terrifying and seemingly impossible situation we've been faced with in the past year...

 

Satan has never... not even once... not even HALF of once, has he won.

 

He'll never win.

 

At 10:30am this morning, our sweet little girl... against many 'professional opinions', but in line with the opinions of those who know him best (Us :-))... was reunited with her completely exhausted, still-somewhat-breathing-challenged baby brother....

 

 

Sometimes.... just sometimes.... a big sister is better medicine than any concoction of ingredients could ever be.

 

And tomorrow?!

 

Tomorrow will come....

 

And exactly 12 hours from now, our long-lasting countdown will finally come to an end.

 

Our sweet boy will hear.

 

The sound of running water when I get him ready for his bath.

 

The sound of the sprinklers when his Daddy takes him outside to grill dinner.

 

The sound of himself chewing.

 

The sound of his Mommy quietly singing him to sleep.

 

The sound of his sister praying the most beautiful prayers a 4 year old could possible pray.

 

The sound of the daily noise that we all take for granted.

 

Sounds he has never heard.

 

Our sweet boy....

 

He will hear.

 

I can't tell you what it feels like for a Mama and Daddy's heart the night before their son will hear...

 

So many sounds... so much quiet... so much uncertainty and insecurity.

 

Tomorrow. 9am.

 

Satan lost this one, too.

 

You've waited with us, too... you've prayed and you've encouraged us and we can't wait to share that moment with you....

 

He will hear.

 

(Hopefully, he'll be breathing well, too ;-))

 

 

 



Signs are to the eyes what words are to the ears...

If you're a follower of our Facebook page, this might be redundant.... bear with me while I catch up a little ;-)

Obviously, so much was going on when Hunter was born that some 'typical' tests and protocol just weren't priority until he stabilized. Apgar scores were recorded so this includes things like foot and hand prints, hearing and vision testing, etc.

Our decision to have Hunter flown to the NICU closer to our 'new' home was made quickly and the Medi-Jet arrived in record time so discharge tests and exams all happened very quickly! In a matter of about an hour Hunter had Heart, Liver, and Kidney ultra-sounds, vision screening, tons of blood work, hearing screening, PT evals, and probably a whole lot more that I don't remember.

I do remember his hearing screening and I remember that he failed.

This didn't mean that he couldn't hear but it did mean that we would need to follow up when we got home with an audiologist.

Our new NICU repeated almost every test that was done previously because they had newer and more cutting-edge technology... and they just wanted to create their own 'vision' of who Hunter was. They repeated his newborn hearing screening and he failed again.

One of the DOZENS of post-NICU appointments that was made for us was with an Audiologist who would conduct another ABR... a test that would measure Auditory Brain stem Response... or, how Hunter's brain responds to sounds; how do the bones vibrate... or do they?! How does the sound travel through his inner ear... or does it?!

He failed again.

This time, it was very clear that Hunter was 'failing' his hearing screens because there was the detection of fluid in his inner ear.... if fluid is in your ear, the bones won't conduct sound.

So we headed to the ENT to discuss if tubes were a logical next step in learning more about Hunter's hearing.

And we all know how that went.... we got TUBES!

The ABR was repeated a 4th time while Hunter was still sedated after surgery.... and he failed again.

Are we frustrated yet?! Ugh.

Hunter's ears were very full of fluid and they drained for WEEKS after his tubes were placed!

We saw the Audiologist again about 3 weeks after his tube surgery and Hunter was finally old enough to have a Behavioral Test vs. another ABA...

** An ABA is only successful if the baby is sleeping or completely still throughout the testing; Hunter never sleeps, period so these were VERY hard tests!

** A Behavioral Test is done in a booth ... various sounds are presented to the infant and the Audiologist records the infant's responses to each sound. This gives the Audiologist a detailed record of what sounds, at what pitches and frequencies the infant is hearing.

Here's the thing...

We have known since we brought Hunter home from the hospital in May 2012 that he doesn't respond to voices and daily noise like Hannah did at his age. He has never turned to look when Mommy or Daddy walk into the room.... he doesn't jump or wake up when the dog barks... he doesn't startle in his sleep...

Knowing that your baby doesn't hear your voice is hard.... and scary.

Hunter takes his social cues from faces.... if he can't see your face (ex. at night, in the car, etc), he panics. You can see in his eyes... "Is everything ok?" "Is Mommy happy or sad?!" "Should I be happy or sad?"

And when one of us has a bad day... so does he.

If you're holding him and he can't see your face, he'll make you look at him.... by touching your cheek, turning your head, or even hitting you... he'll do whatever he can to see your eyes because when he can't, he is insecure.

Sitting in a booth, facing a wall, and knowing that you're expected to respond to something... but you can't hear or see anything... is terrifying to a baby...

to Hunter.

Behavioral tests are stressful for him... they always give accurate information... but they're tough.

It's tough on Mommy, too.

Yesterday was our last behavioral test with a new Audiologist.... She had reviewed Hunter's file and precious test results and when she walked in the room, she didn't introduce herself, she didn't shake my hand, she didn't smile...

"Why doesn't this baby have hearing aids?!?!"

Thank you, Lord.

We have never asked anyone to pray that Hunter's hearing would be restored or that he would pass any of these hearing tests.... we've only been praying for hearing aids!

OUR BABY NEEDS TO HEAR OUR VOICES!!!!

When you can't hear, you can't talk... and he's not talking.

When you can't hear, you can't respond to your environment...

When you can't hear, your own noise level is awkward... and loud.

Hunter needs one more ABR under sedation in order to get accurate frequencies of sound for his hearing aids... this ABR is scheduled for late May (I'm praying for a cancellation before then!!) and, if insurance authorizations and the hearing aid mold process all go as planned...

We'll leave that last ABR with hearing aids.

Our baby will hear.

He'll know what I sound like when I sing to him... he'll get excited when Daddy comes home from work and calls his name... he'll be able to 'talk' on the phone with our family who doesn't live here... he'll recognize Jesus Loves Me and will find comfort in lullabies played in his room...

In the mean time, our job is to learn sign language.

As excited as we are that Hunter will finally hear, we also understand that words and noises will have no meaning to him...

we have to teach him!

Our plan is to learn 5 signs as a family each week.... incorporate them in our daily lives, live and breath them.

We didn't waste any time connecting with our state's Deaf and Hard of Hearing Department and ordering whatever books and DVDs we could find!

Here's a very rough look into what Hunter does and doesn't hear...

He can hear most of what is below the red line but at a much much lower pitch than you or I do.... he cannot hear what is above the red line; namely, voices. (PS... Technology today AMAZES me!)

It's so exciting and comforting to know what he can and cannot hear.... it keeps us grounded and patient. We're excited to know how we can communicate with him now.... and love knowing that, SOON, he will be able to hear us!

Anxiety is there, yes.

But today, this happened....

Today was my first day at my new gym ... It is not a coincidence that the director of the kids program is profoundly deaf. I walked in to pick up my kids and he was sitting on the floor with Hannah and Hunter, teaching them sign language. I will never forget that sight as long as I live and can't even find words to describe what it did for my heart.

I am so thankful that God continues to intentionally place people in our lives who encourage, support, and teach us every day! He is so so good (if I haven't mentioned it before ;-))!

Hannah and I picked our first 5 signs last night....

 Signs are to the eyes what words are to the ears....


Hannah's signs to my eyes are what God's signs are to my heart.


God showed me a sign today... in the form of a man who ministered to my children.


And if that's what happens when I go to the gym, watch out! This Mama's gonna get ripped! HA!