Sunday, February 22, 2015

Fears.

I know...we all have them.  Some of us more than others.

This one for me...is almost crippling.

I've only identified it recently...I thought I had a newer fear of flying.  Then the same fear creeped in...while in the mall at Christmas time.  Then again when Dean and I went to watch the movie Unbroken (please...watch it).

The same fear.

Obviously...couldn't have been a fear of flying.

So I really started to think.

What am I so afraid of...?

This fear...this crippling, life altering fear...is the fear of being trapped.

I find myself searching for the nearest exit when I'm in a store.  I felt pure panic being in the theater watching Unbroken. It was dark. There were people behind me.  I wanted to be in the back row but that was too far from the exit.

Flying.  I realized this when I thought about flying in Africa in a 4 seater plane, IN the rain...we were bopping around like a tin can. And...I was not afraid. What...?  But put me in a huge, way safer plane with 350 strangers and I'm gasping for air.

Who in their right mind would knowingly trap themselves in a tube at 30,000 feet with 300plus total strangers...? Especially...today?

I find myself analyzing everyone that steps onto the plane. I look into the cockpit as we get on the plane. Trying to see the crew.

We just flew to Florida.  I did amazing the whole way there and we had some rough winds on landing in Atlanta. Normally me and turbulence...yah.  But on the way home.  It was different.  I was so overtired.  I always go on little sleep but I was running on very little from the start of this trip.  We went to bed at 1am...got up at 4am for our flight. And yes while we landed in the evening...we were now 3 hours difference and we stayed up late.  Then on our time...were eating breakfast at 5am.  Maybe it spiraled from there.

On the big flight from Atlanta to Seattle it was 5 hours.  I couldn't see down.  Seeing down...is like sitting in the back row of the theater to me. Somehow it makes me feel a tiny bit in control.  It was thick cloud and the panic set in. I literally was shaking.  And combining that with fact I knew I had no way out for 5 hours...

:(

I was praying just to see down.  Somehow that would make it easier.  My mind was racing.

I opened my phone and read a Max Lucado devotional. It ended with this verse:

I, even I, am He who comforts you.  Who are you that you should be afraid?  Isaiah 51:12.

Well then. 

How's that for hitting you right between the eyes?

I do believe there's a lot of scary stuff out there. And in turn...a lot of people I have no desire to hang out with at 30,000 feet...with no escape.  

However.

However.

Who am I that I should be afraid...?

I'm not in control even when I can see down. When I am right by the exit.  If I did interview every person before they walked onto that plane.  

Dean looked over at me and said "Wow...what changed?"

Reading someone else's fear is always a little strange. Trust me...sharing it with the world is even worse.  Even though mine is something you may not relate to...we all have fears.  And in the end...they all do the same thing.  Rob. Steal. Destroy.  

Jesus spoke many, many times about not being afraid.  He knows us. He knows our weaknesses.  He knows me. He knows mine.  And yet He still says "Janice...no fear".  In fact, He goes further than that.  "Who are you...that you should be afraid?"

Ahhh.




Azlan's update.

Sorry this took so long. Honestly...I was waiting to give a full, accurate update.

It's now been 19 days post op.  And this journey could not contrast round 1 more!  

Last time with this surgery, in September, Azlan came home and looked great. No swelling at all. No pain at all. Perfect recovery. His stitches were falling out of his mouth at day 3 and 4.  The horrific smell started at day 3. Worsened daily. His mouth looked awful.  It was just awful. We could SEE the bone graft...as in all the gums had disappeared.  By day 9, it was all removed due to a serious infection.

This time was so different. Lots of pain. Extreme swelling. He was swollen all the way up to his eyebrow!  Crazy.  I called the hospital many times and each time they were a little baffled but hopeful.

We finally got an explanation for the swelling. That with all the scar tissue the dissection would have been very traumatic on the body.  Thus the swelling. However...to his eyebrow?









He got worse by the day. I was tracking it by photos as we went.  This is day 4 post op.





Day 5 was a whole new day. The swelling went down and we were so relieved!



Day 6.




He had pretty intense pain this time and that was really sad. With his extremely high pain tolerance...we have never ever heard him have a "10" in pain.  But he woke us a few nights in a row (sleeping in our room) barely breathing saying "it's a 10, help me...please help me" :( 

Most of his pain was in his hip where about an ice cream scoop worth of bone was removed.  He definitely could feel where the bulk of the grafting went, tight up under his nose.

Interestedly enough...at day 19 post op his mouth is still FULL of stitches.  Hmmm.  You would think it would have been a huge red flag that at day 3post op last time stitches were falling out in clumps!  

He is off all antibiotics and all pain meds. The doctor said he's definitely out of the scary infection zone period and now we wait for the grafting to take place.  Crazy that the new bone won't show up on X-ray until about 6 weeks post op! Until then we don't know what really happened.  However, things look amazing.  His mouth looks amazing and we are so thankful.


Thank you for praying for our boy.  The story of Azlan Honor is really just at its beginning.  Little did we know when we named him...the honor would be ours to walk this journey with our boy. 

Here he is on Valentine's Day.  



















Wednesday, February 4, 2015

His story.

Yesterday started with a full day of pre-ops. What was once dreaded...is *almost* enjoyed. This team of doctors cares deeply about our family...and us, them.


Azlan having a heart to heart with his plastic surgeon.

For the first time, he's now old enough to sign his own name on the paperwork :)


Playing lots of games with Mommy


My favorite. His craniofacial doctor is not just his doctor, she has become my friend.


Azlan signed up to take part in a research. A questionnaire, photographs with this weird hat ...



And while he did it knowing of no reward, he was given a $15 Target gift card for participating!


This was NOT the favorite part.  Dentist. Lots of uncomfortable X-rays and photos in his mouth. I love this picture. He's looking in there to see what all the fuss is about :)



But...the day ended well. A pre-surgery dinner at Five Guys with all of his favorites!  Look at that crew! :)


He ate and ate and ate all evening, knowing this time he was going to get his fill of hard foods before this soft diet that was to come.

We checked in at 8:45am this morning.  We were taken back right aways. And then oddly waited for HOURS. Not easy when you are a young child, fasting. However, we found out there was an emergency that took our 9:30 O.R time and we didn't get back there til after 11:30!


All ready to go into surgery!


This was such an amazing moment.   I saw this doctor walk by...stop...back up and peek in our room. "Azlan...is that you...? WOAH!" :) This is his first plastic surgeon. Yes...from 5.5m and 10.5m!  He saw his name on the file on his door and he always told us he would never forget the name Azlan b/c he loved it! He went and got his full file and I heard him out there showing other doctors and saying "this...? This cleft is as bad as it gets!!". He came back in and took a good look at Azlan's face and palate, admiring his work. So glad I got a picture of them together. We haven't seen him since Azlan was a baby!!



We opted not to pre-sedate this time as his time in recovery is so much longer when we do.  Instead, I dressed up and went back to the O.R with him.  He was definitely nervous once we entered the room (who wouldn't be) but laid down like a pro. I held his hands the whole time as the "root beer mask" was placed on his face. He went to sleep very quickly without the jolts of his limbs like in September. With a lump in my throat, I kissed his cheek and was taken out of there.

This is the crazy part.  I haven't shared this yet because...well...it was crazy and I didn't want to get anyone's hopes up. In hindsight...I'm glad I didn't share it.  

The orthodontist came right before surgery and said "ummm so something strange showed up on his dental X-rays yesterday.  Really strange.  Bone.  We know 100% of the implant was removed from the fierce infection but there is definitely, definitely bone growth there. In fact...he may not even need this surgery today." 

What...?

I peppered her with questions.

What in the world? What are you talking about? Bone growth from where? Where? What...??

She said it could be that a few cells from the implant remained and grew...miraculously...and filled the gap.  

What...??

I mean. Are you kidding me...?

He has an ENORMOUS gap in his bone.  HUGE. 

The graft was 100% removed and now you are telling me on X-ray there is bone where there shouldn't be and we may not need this surgery...?

I approved an X-ray in the O.R that would show more accurately. Then she promised to come talk to me and update me.

Since I didn't feel right sharing this crazy...hopeful...CRAZY news. I sat and waited. For 45 long minutes~!! She finally came out and her look said it all.  Ahhh.

There was bone growth. The angle of the X-ray yesterday made it look complete.  This X-ray showed it was merely this point that regenerated from some graft cells. STILL CRAZY.  Leaving the gap looking like an hour glass instead of a huge gap.  Surgery was moving forward. He needed the graft.

Ahh.  

:)

It was a wonderful thought.

And would have made for a fantastic story.  An amazing blog post.

Of all the prayers that went up for Azlan and all the disappointment with the awful infection and removal of the implant...can you imagine?

But it wasn't his story.

This is his story.  This is the one God is writing for him.

A few hours later I was updated that things were going really well. 

 The lady behind the surgery counter desk saw me struggling with heavy bags and offer to store them behind the counter. She smiled and said "I don't offer that for everyone" and I asked if I'm a familiar face...she smiled.  :)  I know the answer.


I was paged to come back to surgery.  Everything was done. The surgeon wanted to meet me.

He said it went great.  He talked about the bone growth and we both laughed at the hopeful thought of not needing this surgery...but quickly came back to discuss our reality. 

Bone was taken from his right hip this time. Similar incision. Everything was similar.  Except this time he's on antibiotics and we are watching closely.

When I finally saw my boy...it was that same face. That same familiar, dark eyes.  Pale...swollen...blood stains around his mouth. My boy.

I immediately laid in his bed with him.  He was so sweet.


Identical to the surgery in September...I could tell there was pain. He said it was a 4. (That's an 8 in our language...he has an incredibly high pain tolerance).  He was given morphine and felt better once that set it.  He has a nerve block in his hip that is helping a lot but the pain is in his mouth.

Then there is this. This beautiful face.

Left side of the photo you can see the swelling. While he looks amazing, his face is asymmetrical so the right side (left of photo) is very sunken in, smaller jaw bone etc. Yet here it's puffier than the other.  In other words, extremely swollen.





Once we got his pain under control we settled in for the night.

He's drank, eaten (all the soft mush they served. He must have been hungry...) and even stood up once so we could remake his bed.

He's laying here beside me, breath heavily as he's always done.

Tonight I'm thankful. Though it looked like we were so close to miraculously skipping this major surgery...here we are.  And though we were SO close to having Russell Wilson come visit us (we were on the list, he was only steps away from us)...we are thankful he spends the time with kids who definitely needed cheering more than Azlan does.  

Tonight we are asking you to pray. Please pray against infection.  According to Azlan's medical chart, he is "high risk for infection".   And with an insanely high pain tolerance...we have to be on high alert for problems.

Many have asked me what this surgery is all about.  Azlan was born with a severe, severe cleft lip and palate.  

Here is a brief recap of his story:

Moments after birth. The most beautiful face I had ever seen.  This cleft was known. The palate was not. The severity was not.  I...however...being a realist had googled every severe image I could fine and prepared myself for the most extreme. I was so glad I had.  He was here. Looked exactly as I had expected and I was completely...totally...fully in love.

Azlan Honor was here.


Meeting Zion for the first time. Yes, they are THAT close. 14m apart!

This photo shows the severity of the cleft.


Perfection. I love this picture.


This is him at 5.5m old. February 2007. Arriving at Children's Hospital for his lip and nose surgery. Can you now see why my heart was crushed to say good bye to this face? I had never seen anything so pure.


Moments after seeing him for the first time, post-op.  I cried and cried and cried. The nurse had to hold me.  I kept saying "that's not my son, that's not my son!" I truly could not see Azlan.  I was completely lost.  Where was my Azlan boy...?


 


Moments before his palate surgery.  July 2007.  





Post op palate.  He had a rough time.  Went from recovery to ICU.


The day we found out Azlan was completely deaf in his right ear. Something I had insisted on from when he was just hours old.  I really never wanted to be right...but I had a feeling..I was.


For extra cuteness. 


His second birthday. Such a beautiful picture of my boy.


Azlan's BAHA (bone anchored hearing device-implant into his skull for his deafness) surgery April 2012.



 So this is the last surgery to fill the cleft. The gap.  This is the gap in his jaw bone.  Bone removed from his hip (an ice cream scoop's worth) and implanted into his jaw.  This is round 2 of this surgery. He had it done in September and it was all removed 9 days post-op due to a bad infection.

This is critical for bone growth and teeth development.  

It is not the last of his surgeries. In fact, the orthodontist sat down with me yesterday to discuss the severity of his underbite. She said that as he's growing, it's worsening. And it can't get worse. So there is very likely a surgery on his upper jaw in the not-too-distant future.  And honestly...that's just the beginning on his jaw. And more reconstructive on his nose and lip.

And...this...? This is his journey.  It's not a mistake. He's not a mistake. He's not a statistic.  He is so perfectly made for a purpose.  We didn't pray God would heal him before birth. We knew. I knew he had a cleft before the ultrasound revealed it!  This is our story. This is Azlan's story.  Most importantly...this is God's story.  He's the author.  

And oh...God has an amazing plan for this boy.

You'll see.  

You'll see.







Friday, January 30, 2015

My constant.

I woke this morning with this song going over and over and over in my head.  I haven't listened to it in months.  I love how God speaks.

I sat at my desk, kids in school (I'm the teacher) and the phone rang.

Children's Hospital.

Why is this surgery tearing me up inside?  Why is this so hard for me?

I honestly can't articulate the answer.

I don't know. All I know is tears are just a thought away.

The nurse called, told us what time to check in. Procedures.  Then stopped.

"Janice...? Are you ok?"

Pause.

A quiet "of course, yes I'm ok"

"Janice...it's going to be ok."

"Yes, yes. Of course."

I hang up the phone blinking back more tears when I remember how I woke. This song. Yes. I need to go look it up and read the lyrics.

The sun comes up, the sun goes down
We're watching and we're waiting
The wind blows north, the wind blows south
Life is always changing
But You stay the same
God, You, You remain

You're my constant in the change
You are the color that never fades
Every season I go through
Is bringing me closer to You

A newborn cries, we say good-bye
Blink and life it passes
Chasing dreams, we break our wings
But we'll just keep on dancing
And You lead the way

You're my constant in the change
You are the color that never fades
Every season I go through
Is bringing me closer to You

Till everything falls into place
When we're standing face to face
Every healing and heartbreak
Bringing me closer

Then sings my soul out in wonder
Then sings my soul, You are the answer
Then sings my soul, I'm Yours forever
Then sings my soul out in wonder
Then sings my soul, You are the answer
Then sings my soul, I'm Yours forever

You're my constant in the change
You are the color that never fades
Every season I go through
Is bringing me closer to You

Till everything falls into place
When we're standing face to face
Every healing and heartbreak
Bringing me closer to You

And I smile.  Yes this season, too, is bringing me closer to my Savior.  And my favorite, favorite...is the line I woke singing:


You're my constant in the change
You are the color that never fades
Every season I go through
Is bringing me closer to You


I need a constant.  So do you.  Life is crazy.  We never know what's around the corner.  But I do have a constant in all the unpredictable tomorrows.


Thursday, January 29, 2015

Weary.

All afternoon and evening when I pause to think at all...the word that comes to mind is "weary".

I'm just like you. I'm emotional.  I'm hopeful.  I love my son more than you can fathom.  And I don't want to go through this hard thing.

And...like you...I don't have a choice.

Sometimes you pause and you just think..."I'm...weary."

And in my moment of reflection...I hear a sweet small voice.

"It's ok.  I can handle weary.  Remember...? I know you are weary.  I actually spoke of this..."

I stop.  Think.  Try to think.  And remember.

Yes.  Yes You did.

"Come to me...all you who are weary..."

Ahh.



Matthew 11:28 (NIV)

28 “Come to me, all you who are weary and burdened, and I will give you rest.

In an unfamiliar version of the Bible:

Matthew 11:28Amplified Bible (AMP)

28 Come to Me, all you who labor and are heavy-laden and overburdened, and I will cause you to rest. [I will [a]ease and relieve and [b]refresh [c]your souls.]

Ahhh.

Yes.  

Weary and burdened. Needing that 'rest' I know He's talking about.  

In sharing this journey of my heart with so many of you I've seen the reality...that we are all walking through our own journey. Our own, individualized, hard...story.  

Perhaps you...too...feel weary.

Perhaps you...too...need rest.  Peace.  Heart...rest.  

Come to Me, he says.  Come. 

Then I hear the whisper of this song. I love when He whispers a song to my heart that I don't even remember the lyrics to...and I look it up and sit blinking through the tears. 

This.  

Please. Just take 4 minutes and click the link and watch it.  

If you are weary...broken...hurting...

I hope this speaks to your heart as it does mine.





Wednesday, January 28, 2015

Oh...February 3.

I just received  a phone call from Seattle Children's Hospital.

And somehow this total realist managed to completely block February 3rd out of my mind.

Until the phone rang.  And when the plastic surgery nurse hung up, I sat stunned.

I've been sitting here in an odd silence ever since.  Teary eyes. Stomach in knots.

Whether I count down or not...I can't keep February 3rd away.

Azlan's second bone graft surgery.  Yes he was only supposed to have one. But the first one, despite all of our attempts, had to be removed due to infection.

They will go into his right hip bone this time, take bone out and implant it into his jaw.  His gap is very very wide. Over an inch wide at the base of his nose. It's a lot of bone.  Every plastic surgeon that came in same the same thing with the same expression "we were not prepared for such a huge gap and a huge amount of bone to be used."

How have I pushed this out of my mind?  Was that the best choice?  I'm a realist. I deal with things head on.  Give me the facts. The pros. The cons. And let's go.  But this time...I've willfully chosen to just not think.  Surgery...? What surgery...?

As I was sitting here with teary eyes....it hit me there have been other February dates I've dreaded.  I decided to look back at Azlan's blog.  February 4, 2008...was the day we found out Azlan was completely totally deaf in his right ear.  That was a day I'll never forget.

http://azlanhonor.blogspot.com/2008/01/feb-4th.html


Going back the year before...February 6, 2007...was the date they took that perfect face and transformed him.  I will never, ever, ever forget that day. Or any of the emotions surrounding it.


http://azlanhonor.blogspot.com/2007/02/here-he-is.html

Here we are. Years later.  February 3, 2015.  I'm dreading this day too.

And in my stunned silence...I hear that sweet voice whispering to my heart.



10 fear not, for I am with you;
    be not dismayed, for I am your God;
I will strengthen you, I will help you,
    I will uphold you with my righteous right hand.

Isaiah 41:10.


I am with you.  Don't be afraid.  Hard things...? Oh yes.  I didn't promise otherwise. 

Then it hits me again. He didn't promise no hard things. He promised he would be with me IN the hard things.  Storms? Yes.  Pain? Yes. Heart ache...? Yes...Janice.  Yes. I'm sorry but ... yes.  BUT...wait for it...I'll be with you.  I will make you strong.  I will help you.  I'll hold you when you cannot stand.  I am with you.  



Christ alone...Cornerstone!
Weak made strong in the Savior's love...
Through the storm, He is Lord...
Lord of all!

https://www.youtube.com/watch?v=bV3rYXc152E






Monday, January 26, 2015

Someone...not something.

January first, Tirzah asked me what my goals were for 2015.  Is this a child after my own heart or what? :)  I told her some of my goals and she smiled and said "that sounds great! I have a big goal this year. A few goals but one big one."  Intrigued, I asked more.  "Oh, I'm going to read my Bible this year. The whole thing. And...I've figured out a plan. I found out if I read four chapters a day, I can do it!".

Our conversation soon moved on and so did the calendar.

Today is January 26.

Each day I've seen her sit down and open her Bible with the horse on the front.  I've asked how it's going and she's smiled. I've heard that some of it is difficult but she's excited she's doing it.



Yesterday we had a little date. Her and I.  We shopped for a bit together but then... we sat.  And we talked over a smoothie.  No phones, no noise...just her and I.  She asked me again how God called us to Africa. And China. She sat there with that sweet, closed mouth smile the entire time.  She knows the story. She just loves hearing it.  

She told me...again...how she feels God wants her to go to India someday. She said "you know, it's the weirdest thing. I can't shake it. I don't even WANT to go to India. I just can't get it out of my mind. I think a lot of people in India must need Jesus."

I told her I'd love to go to India. I told her my dream of going on a medical trip to help cleft babies with their surgeries.  She smiled.  Then suggested we go together sometime.  

In typical 11 year old fashion she then paused and said "I sure wonder how I'm going to get Marz (her horse) to India with me..." and went off dreaming about that process. And I sat staring.  At the wonder of her.  



And then...tonight, I saw this quote. And I loved it.  




Tirzah Liberty.  
You are a gem. 
 I can't wait to see the impact you have on the world. 
 I will love you forever.