We all have a story to tell whether we whisper or yell....

Hunter is 7. He was 2 pounds at birth and his story is a complicated one, to say the least. But oh, it’s a good one! It’s a story full of surprises and predictability… joy and fear… knowns and unknowns… and miracles. So many miracles. We hear in the special needs community that our child’s story isn’t ours to tell… that parts of their story should be private or told only when and if our children decide to tell them. Maybe this is true… but I’m starting to think that perhaps time has taught us otherwise as Hunter’s parents.

Hunter somehow has the greatest joy amidst his 23 medical specialists and multiple diagnoses that qualify him as ‘special needs’, however I stand firm in my belief that his hatred for Target is in fact our greatest challenge… one this Mama continues to build an arsenal of ‘survival techniques’ for on a weekly basis!

I had such high hopes on that Tuesday morning! We had successfully gotten through one doctor’s appointment and Hunter was his usual, joyful self in the car. As I pulled into the parking lot I had my sights set on that adrenaline filled power-walk through the Target Dollar Spot! We could do this! Little did I know that today would be a ‘green calculator’ day and not a ‘red one’.

With the red calculator and the tiny hands of my 2 little boys in my larger ones, we started our trek through the handicapped parking spots and as I saw those bright red cement balls and double doors getting ready to welcome me, Hunter stopped mid-stride…. his feet spread in his ‘combat stance’, his body pulled back ever so slowly until our joined hands were stretched as far as they could go, and my grip got tighter as he lowered all 50 pounds of himself on to that brightly painted blue wheelchair on the parking lot pavement before he let out his combat scream.

Hunter. Was. Ticked.

Now you must understand that our son is non-verbal in the sense that he has limited words, however our son communicates extremely well. And very loudly. As his ‘expressiveness’ grew louder on that warm pavement it was my job to decipher why he was there in the first place. In our normal routine, Abe and I closed in so we could give him space to express himself safely. He yelled and carried on for about 274 minutes… ok ok, for 3 minutes but if you’ve ever been ‘that mom’, standing on the blue wheelchair in the Target parking lot, you know how long that 3 minutes feels! 

As he threw the red calculator across to the next spot in true ‘hopscotch’ fashion, he communicated quite clearly that it wasn’t a ‘red day’. I took this time to calmly talk to my non-verbal son about how we’d walk back to the car when he was finished and get his green calculator, how I understood that he was frustrated but we needed to get milk and bread and peanut butter and even some lollipops for a special treat so we had to find a way to calm down and do our shopping.

All the while I was taking inventory of our surroundings while trying desperately to push down the intense feelings of failure and humiliation and even fear that I was feeling as I imagined what we looked like to those who were observing our moment; the ambulance was parked out front, meaning that our local paramedics were doing their daily and well-deserved coffee run…. a sweet older couple was walking to their car…. a mom with a newborn was headed inside…. a teenager was pulling in and I wondered why she wasn’t in school… a woman who could be a grandma was talking on her phone in her car….

Hunter started to calm down so I helped him up, fixed the hearing aid that had come loose, straightened his glasses, gave him a squeeze to tell him I was proud of him, gave Abe a squeeze and told him I was proud of him, too, took the hands of my 2 little boys once again, walked quickly back to the car to get the green calculator, and headed into the store where we bypassed the Dollar Spot and forgot to get the milk…. but we made it! On our way out of the store about 472 minutes later… ok ok, about 13 minutes later… that woman who could be a grandma stopped me at the double doors;

“Here it comes… ” I thought to myself.

“You did a great job, Mom. Those boys are so lucky that God chose you to be their mom.”

The laundry list of what I could and should have done better was already running through my head… it had been for over 16 minutes. Her words soothed my anxious heart and gave me the nerve to walk across that blue painted wheelchair one more time and get my boys home.

Here’s what I’ve learned; our son tells his own story well… and your sweet thing probably does too! Whether it’s his hearing aids, her glasses, a wheelchair, braces on his legs, a speech impediment, a turn of the head or silly sounds they make, that swim diaper or life jacket at the pool on a child who seems a little too old, the repetitive noises, or the tantrums on the blue painted wheelchair, they are true story tellers. But the story they’re telling is a hard one to tell without someone to fill in the blanks…. the details. It is so tempting at times for me to push down the frustration I feel when I know someone ‘just doesn’t get it’…. but then I have to ask myself if I’ve given them a chance to.

A few weeks ago we ‘introduced’ our Hunter to our community on social media. It was terrifying. But the truth is, Hunter is the best story-teller… we’re just doing our best to build our arsenal of tools so we can create a life for him that is safe, full, and understood. We’re filling in the details of the story he is already telling.

You were chosen to be this precious child’s parent…. everyone else was chosen to be their community. Come alongside your child and tell that amazing story… let your Village in on the details. Give that “could- be grandma” a chance to see that it’s just a green calculator day and not a red one…  and give yourself and that sweet baby of yours a chance to soak up the safety, encouragement, and understanding she has to offer when she has just a few more details to go on. Those green calculator days don’t feel so lonely when your community is in on the secret… and those red calculator days are that much sweeter!

Lindsay Smith is wife to Joey, Mama to 5 babies; 3 heartgrown through adoption, 1 homegrown through biology, and 1 waiting in Heaven. She is an advocate for special needs parenting, open adoption, miscarriage, and every Mama … because we all need just a little extra grace. "From His fullness we have all recieved grace upon grace." John 1:16. She writes and tells stories at On Loan FromHeaven on Facebook and at www.OnLoanFromHeaven.com .

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!

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 :-)

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

Baby Girl V- SHE HAS A FAMILY!!!

I post these updates with shaking hands each and every time... and it never gets old.

It will never get old.

750,000 page views in 72 hours... over 5,000 Facebook 'shares'... and over 275 inquiries....

and....

Baby Girl V has found her forever family!

YOU helped Baby Girl V find her forever family!

And that... is simply amazing.

This family has not been announced yet but I promise you, when and if they are comfortable making themselves known, I promise I'll let you know! I know their hearts are full... I know their arms are full... and I know that they are full of thanks for everything you did to help them find their precious baby girl.

We will also get an update on Baby Boy K soon... very soon :-)

God is so good...

so so good!

And you, my friends.... you were God's hands and feet on behalf of some of his most precious creations. Thank you for allowing these babies to change your hearts... you have changed so many lives forever... and I'm assuming some of yours have been changed, too ;-)

"You shall receive blessings from the Lord, and righteousness from the God of your salvation!"
~ Psalm 24:5

If you're a family who inquired about Baby Girl V, please don't let this be the end of the adoption process for you... I know how this kind of news feels when there was even a glimmer of hope if your heart to be this sweet girl's mommy or daddy... and I know how hard it is to be so happy for her and so sad for you :-( I firmly believe that God doesn't change hearts only to put them right back where they started. Allow him to continue guiding you... continue learning... and know you're being prayed for as you continue to follow his plan for your family! Growing your family is worth the wait.... worth every single painful, exciting, long, and exhilarating second :-)


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If you or someone you know is in the process of adopting from China, has a log in dossier, and is open to special needs, please email me at OnLoanFromHeaven (at) yahoo (dot) com.

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If you or someone you know (agency or individual) is trying to make an adoption plan for a child with special needs and would like assistance, please email OnLoanFromHeaven (at) yahoo (dot) come to receive our pre-screening form! God has given us this platform and through it, we have found ourselves overwhelmed by the number of hearts for special needs adoption... we are happy to help in any way we can!

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If you haven't met the woman behind the title of our blog yet, be sure you do... her music belongs in your home and I would love nothing more than to bless her in the many ways you have blessed these babies! Plus... it's a great giveaway, too ;-) 

The 'Special Needs' Parent

I've been a high school teacher...  I've taught English, psychology, creative writing, and everything in between. I've been a special needs teacher.... I've taught precious children who had Autism, Downs Syndrome, and Aspergers... children who were verbal, non-verbal, and everything in between. Those babies taught me so much... more than I could ever have hoped to learn in one lifetime of lessons.

But in the past 2 years, I've learned one of the biggest lessons of my life;

I've spent much of my life working with and loving children who had 'special needs'... children whom the world refers to as 'special needs children'...

And that, my friends, is a huge mistake.

In my short 2 years of parenting a child with 'special needs', I have learned one of the biggest lessons of my life...

There is, in fact, no such thing as a 'special needs child'.

You see, 'special needs' does not refer to the child; in reality, 'special needs' refers to the child's parents.... to us....

to me. 

I went to bed last night feeling disappointed in myself... Defeated. It's so hard not to ask myself sometimes if God made a mistake by trusting me with this gift... This precious, 'special', child of his...

I'm not patient enough... I don't 'know' enough... I haven't been a parent 'long enough' to be what this amazing little boy needs in a Mama!

Hunter 'usually' sleeps until 7 or later, but when he woke up with his 'sad cry' this morning at 5, I knew something was 'off'... 

And I thought it was him.

I brought him into bed with me and as soon as we laid down, he snuggled in with his warm cheek against mine, and slept (and snored) soundly (loudly) until 7:30.

That's heaven, my friends.

Me? I didn't sleep a wink.

Sometime around 6am, with that little squishy cheek against mine, I realized something...

He wasn't 'off'... I was.

I spend so much time dwelling on whether or not I'm good enough for him... whether or not God made some huge mistake in trusting me with him...

that I've missed the true purpose of God's plan;

God did not 'gift' this child with me because I am good enough or knowledgeable enough.... because I'm not....

 this Mama is as 'special needs' as they come. 

My Jesus knew that the only way I could make it through this life.... the only way I could fulfill the purpose HE has for my life.... was if I had this particular, and amazingly 'special', warm cheek against mine at those moments when I am the most 'special needs'.

Hunter will be fine... He IS MORE than fine... He's a miracle! Don't get me wrong... He works his (you know what) off every day to be who he is and do what he does... but there is nothing that I can do to change the already-perfect plan for his life by being 'good enough' or 'smart enough'.

But me? I'm still learning... I'm catching up...

And even though I might be a slow learner, and even though I sometimes let what's 'typical' blind my faith and trust in the God who not only gave my children life, but gave them to ME... 

My God also knows when I just need a sweet, warm, squishy cheek against mine.

 And sometimes, I need the reminder that what makes ME 'special' is what makes me what's best right now for the babies He's given to me.

And if that's all I learn for a lifetime of lessons? 

That's enough. 

Tonight? I'm going to bed content... even though my parenting day wasn't perfect. 

And I'm hoping with all my heart that one of my babies wakes up at 5am, knowing that his or her Mama needs their warm, squishy cheek against hers because that's the best way a 'special needs' mama can possibly start her day!

~ Here's to wishing that your sleep is filled with warm, squishy cheeks... and the reminder of what makes you 'special needs' in this life that God has perfectly chosen for you.

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 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!