CLICK HERE FOR FREE BLOGGER TEMPLATES, LINK BUTTONS AND MORE! »

Saturday, September 27, 2014

But ... why does it need to be changed?

Tonight Azlan and I were sitting together and talking.  He seemed quiet. So...we were chatting about everything that has recently happened.

At one point, he said "but why did they do it?" Fully assuming he was asking about the surgery yesterday, I went into 8 year old detail on what happened to the implant and why it was very important that it needed to come out.

He let me go through everything then stopped and said "no...not that.  Why did they do it in the beginning?"  Ohhhh. That.

So I went into detail about when he was born with the cleft lip and palate...he was also born with a hole in his gums (jaw).  And how they need to take bone from his hip to patch the hole.

Again he listened to me ramble on and then said "no...by why does it need to be changed? That's my point. The hole. I loved that."

Oh.

Honestly...it immediately had such a powerful application that I simply pulled him into a hug.  Yes there's an answer...but to him...there's a question.

And I got it.

It's all he ever knew.  It was a part of just who he was.  He was born with it. Why did it need to be changed anyway...?  I saw into his heart...and it was real simple: "you could have avoided all of this.  Everything that happened...was because you are trying to change it and patch the hole. Why? I liked it."

As I hugged him...I got it.

I saw the bigger picture. He can't see it. But I can. And you can.  You are probably baffled right now at how an 8 year old, brilliant boy...would even consider not wanting a huge hole in the very visible part of his mouth... fixed.

But wait...

God sees the end from the beginning. And He puts us through the fire...with an end product all planned out.  Yet we see the fire. We see the pain. We see the process. And honestly...we don't get it.  We like the way things are. The way we are. It's all we've ever known.  Why the pain? Can't you save us some of that...? Especially since...we like the way it is.

And God is going "ooohhh no.  No, no.  See ... the way it is...isn't going to work.  Yah...I know it's all you've ever known...but trust Me...I have something SOOOO much better. This pain and stuff you are going through in order to get there...? Well...you'll see. You'll see. I promise you...it's worth it."

But maybe instead of the eye roll and the lecture of how short sighted we are...and the laugh out of the corner of His mouth...maybe...just like I did with my son today...He just pulls us into a hug.

"It's ok. The answer can wait.  Right now...I get it.  To you...right now...you just don't see what I see. But someday...you'll see."

All that's how it ended with Azlan today.  There is a bigger picture. We all see it.

He doesn't.

Why the hassle...? Why does it need to be changed...? He likes it perfectly the way it is.

But we know...we know there is much better. There is not an ounce of hesitation on our part whether we should proceed or not.

Is there...?

We know with the pain, the set back, the recovery, the risks....the everything that comes along with this path...we know the end result...is so far....so very far...beyond where he is today.

And...just like that....so does God.

Azlan was so sincere. It was so heart felt. I wished he had asked me days and days ago...because this was clearly the deep question that he was baffled by all we were putting him through...in his mind...for what? Why does it need to be changed?

Oh...you'll see.

You'll see.

And so will you.  You'll see how it had purpose.  How the comfort you found yourself in before it all began...how there was so much more for you.  And you'll look back...just like Azlan will....and go..."ohhhh.  Now I get it.  Now I see."








Friday, September 26, 2014

Defeated...?

Yesterday we were told to call the surgery center at 8:30am to get a surgery time. They call me at 7:10 asking if we could be there at 11:00.  Ummmm no. We couldn't. It's a 3.5 h drive plus we had 10 children still sleeping.  We are good...but...not that good ;)

We got on the road and arrive around 1.

When we checked in, they didn't even let us sit down, but called us back to be prepped for surgery.

The senior resident plastic surgeon talked to us first. He looked in his mouth, showed no alarm (clearly he didn't inhale...) and said "likely we will just remove a bit of decay, sew it up and move forward, It's unlikely he will need another bone graft".

Then the attending surgeon came in.  He did not look in his mouth.  He spoke very confidently and we had a good talk. I told him...please...don't go conservative.  How does it help us if you take a bit out but the rest has to come out next week. He said "after looking at Azlan's medical file, seeing the photos and hearing about the smell...this is urgent. I won't be conservative...if the 'bug' (infection) is throughout...it's all coming out otherwise we risk the infection getting to his real bone (jaw) and then we have serious problems."

 Surgery was about 1.5 hours.  The surgeon came and met with me.

He said 100% had to be removed and "it was an awful lot of bone they had implanted in there. A LOT of bone. His cleft is massive. WOW.  The gap by his nose is so huge, so much bone...but the infection was absolutely throughout and that is what you were smelling".  We talked for a while. I was very open about our feelings about the surgeon telling us this was doable with a qtip in the office.  He stammered and looked away.  Then said "well,... I"m not him so you should ask him".  Hmm.  I asked more questions and he said "There's no way he saw the photos I saw and heard about the smell...b/c when I did...there was no doubt we were dealing with something serious".  Problem: He did. He claims to anyway.  He said "you need to ask him what he was thinking because I'm with you...that doesn't add up. At all".

He tried to cover for him at the end and said "we had a talk last night and he knew my feelings about urgent surgery and he agreed with me" :)

He said you don't ever sew up an infected area. Infection heals better open.  But...once he saw the huge cleft...he said "I knew we had a big decision to make.  There was no way we could leave that open. It was crazy. Plus his jaw would be exposed and at risk. So we sewed it up but left holes for drainage".

He said the next 2 weeks are very critical when it comes to healing from this infection.  Then we need another 4-5 weeks for solid healing and then....a complete...total...re-do.

This is 9 days post op.  The surgery that went so well. It was intense but...his recovery was amazing.  A gift.  No pain. Ever.  And a fierce infection.

When did it all start? Well the smell started on day 3.  It worsened daily.  But...he had none of the signs of infection that we were told to watch for. No swelling. No redness. No pain. No fever. No fatigue.  No irritability.  Nothing. He had a horrid smell that I hope to never smell again in my lifetime...and it did not look right in his mouth.

Now we know what we were seeing.  The gums literally were gone.  He said when there's an infection in the body, the body will do everything to expel.  So it did. The gums totally were gone.  I mean...crazy. And yes...we were viewing the actual bone that was implanted.  And it was rotting. And that smell...

91%. He kept focusing on 91%.  91% of this surgery is a total success.  9%...infection.

91% is great. Except when you are the 9%.

Today...Azlan is the 9%.

Yet not a statistic.

No...never a statistic.

ahhh.

So much more.


Next time...what are the 'odds'?  9% that this will happen again. When I asked about what he's experienced, he said "I've never had to do it more than 3 times in a child".

I think that was supposed to give me hope...

It left me...feeling otherwise.

Defeat.

I left feeling defeated.

I woke feeling defeated.

We have a child limping from a huge piece of bone being removed,...and in Azlan's words "it's just in the garbage somewhere.".

Defeat.

He will heal from this only to repeat it all again. Limp for another month from the other hip.  Eating mush for another 10 weeks. Another 6 weeks of no running, no bikes, no ball.

In quietly in the back of my brain, somewhere deep inside I hear it start to rise..

You might be down for a moment
Feeling like it's hopeless
That's when He reminds You...
That you're an overcomer
You're an overcomer

Not defeated. 

The night before the second surgery ... the..."surgery of defeat"....

I opened my Bible...then closed it.  Then...I grabbed it and clutched it to my chest.  No words. No prayer coming.  Not sure I wanted to hear what He had to say.  Sad. Pathetically sad.  True.  Raw and true.  

I sat still on the edge of my bed...speechless...motionless...my mind numb.  

Where is my hope? Where is my strength?  I'm not amazing.  I'm not gifted in how to handle defeat.  I've cried, I've sobbed...I've asked "where are you??" in my not so lovely voice.   

But I felt compelled to open it up.  Just open the Book.

But now...this is what the Lord says.
He who created YOU, O Jacob.
He who formed YOU, O Israel;
Fear not, for I have redeemed YOU;
I have summoned YOU by name;
YOU are MINE.
When you pass through the waters,
I WILL BE WITH YOU;
and when you pass through the rivers,
they will NOT sweep over you.
When you walk through the fire, 
you will NOT be burned;
the flames will NOT set you ablaze.
FOR...I am the Lord, YOUR God,
the Holy One of Israel, YOUR Savior;
I give Egypt for your ransom,
Cush and Seba in yours stead. 
Since YOU are precious and honored in MY sight,
and because I LOVE YOU,
I will give men in exchanged  for YOU
and people in exchange for YOUR life.
Do not be afraid, for I AM WITH YOU,
I will bring your children from the east
and gather you from the west.
I will say to the north "give them up!"
and to the south "do not hold them back"
Bring my sons from afar, and my daughters from the ends of the earth
everyone who is called by my name, 
Whom I created for MY glory, whom I formed and made.

Isaiah 43.

Do I need more than that?

No.  That...that is enough. 

I will take what comes. I will not ask WHY. I know WHO. I am His.  And when I can't do it...He can.  When I feel defeated...He's not.  When I'm done...Oh...He's never done.

You are precious and honored in my sight...and because I love you.

One of the most beautiful things I've ever...ever read.  And it's from God. To Me.

Through Him...I'm an overcomer.  I might be down for a moment...but it's definitely not over.

It's a new day.  Today is a new day.


Wednesday, September 24, 2014

The real update.

The update...was the factual..medical...update.

This is the real update.

I feel like I could be sick at the thought of what is ahead. Why didn't it work? It's too early to be rejected.  We were told we would not know for 6 weeks if the body accepted it.  Day 9 and it will be all removed.  What happened?

Then I remember my commitment to not ask "why?".  Wrong question.

It's not about "why...?" that's just anger that never gets satisfied.  Is there any answer that would be good enough for my heart...?  I can't see the full picture.  I don't have the bird's eye view.   I couldn't handle the answer right now.

But I do know "Who...?".  I know Who is with us.

 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8.

That's all that matters.

And the song that has been consistently in my head all evening...

"You are good...you are good...and Your love...endures forever..."

With all the questions I refuse to ponder any further...I will focus on what I do know.

I do know He wastes nothing.  I do know He is right here with us...promising never to leave.  I do know He sees the end...He has the full-picture view.  I do know...

"...it's not a dead end road...if it takes you where you needed to go..."

My heart hurts tonight.  This isn't how this was supposed to be.  Yet...I find total peace in the One who loves Azlan more than my heart could ever be capable of.

And He is good...He is good...and His love...endures forever.

Update.

We spoke to the surgeon today.

She first suggested we keep our appt for Friday but this smell is almost unbearable. We don't know how we'll make it in the car with him...it's that bad.  That...bad.

Finally she really listened and said "I had a patient once...just once...that had this same issue. When they finally came into the office, it smelled like a dead body in the room. It was that bad. I didn't know how the family handled it until that point."

I asked more about that child and she said "yes it was all dead, they had to do surgery, scoop everything out and redo the entire surgery a few months later when his mouth healed".

She then spoke to our surgeon and we are still shocked but his idea was to "bring a qtip and take any dead bone out in the office on Friday".  I may have accepted this craziness but Dean...did not.  He said "this surgery failed. This is crazy that we would wait back in line with clear total decay happening in his mouth with the risk of infection. Not ok"

A qtip in the office? What is he thinking? I'm shocked he said this after seeing the photos!

The doctor on the phone, since she did have a patient once in the same situation...said "I know..I know it's bad what you are dealing with. I'll see what I can do".

She called me back later and said "yes he wants to go ahead with the qtip in the office plan Friday".

I paused and said "do we have any other options because we aren't ok with this plan". She paused and said "absolutely, I already have a surgeon booked for you Friday afternoon in Seattle to clean it all out. I had a feeling you weren't going to go for that plan and I already had it set up."  THANK YOU!!

Then the office called me and said "the surgeon that will be doing this surgery said he cleared his schedule tomorrow for you to come b/c he doesn't think it's right for you to wait another day based on the photos and description of smell."

Thank you!!

So we leave in the morning for Seattle for an afternoon surgery to clean it out. We have no idea at this point if it all has to come out or not.  If you want to know my gut...everything will come out.  There is no way this smell is from one small piece of decay. No...way.

Also the fact that the gums came wide open.  The doctor on the phone said that definitely indicates a problem b/c skin has problems healing over decay.

There is no infection right now.  I know we had that concern but this isn't infection. It's simply bone that did not take...and is rotting...in his mouth. (However they have said there's clearly a risk of infection with dying bone in his mouth so he is on antibiotics)

I promise you...you are not jealous of a 4 hour car ride with this smell. My poor boy.

We had a good talk this morning and I sat all the children down to tell them.  They were so sad and Zion had big tears in his eyes.  Azlan was blinking them back and bit and then said "Ok mommy...let's do it".

That.

That resolve.

Let's do it my boy. I'm with you.

Doesn't mean it's not painfully heart wrenching.  Doesn't mean that at all.

But we will do it without complaint and still thank God for the miracle of no pain.

Please pray for Azlan.


Closer to You. This...this too.

I tossed and turned for a long time last night praying for peace to come.  I kept seeing the inside of Azlan's mouth and shuddering.  Peace. It was so close but just too far away for sleep.

I read. I prayed. I laid and I waited.

I woke with a gift.

I woke hoping it was all a dream, knowing it was not.

I woke with this song going through my head.

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

Then sings my soul>

The part I put in bold is what I woke with.

So today...I will take that this too....will bring me closer to Him.  This too.

You can listen to it here:

https://www.youtube.com/watch?v=o0KOOwJhWsw

Tuesday, September 23, 2014

Pumpkin Spice and a really good cry.


Yes...it's 11:30 pm and yes...I just sat down with a cup of coffee. No it's definitely not decaf.  

That sounds really tough but honestly caffeine doesn't affect me in any way. 

We just came in from outside. 

I got off the phone with the plastic surgeon on call at Children's and immediately walked outside into the dark...put my head in my hands ... and cried.

Dean followed me. He held me as I had a good...deep...cry.

We sent a photo to the doctor on call and I talked about the smell coming from his mouth. I've honestly never smelled anything like it. No amount of people telling me "mouth surgeries can make your breath smell bad" could eliminate my concerns.  This...? We can smell it a room away and it's unlike anything I've ever smelled.  Something...something smells like it is dying. 

Then the photo.  There is something wrong with his mouth.  I'm seeing something I should not be seeing.  That...is for sure.

She talked to me then said she would call me back after she viewed the photo.

She called back in 2 minutes and said "yes...you are correct. Something is wrong."

We talked for a few minutes, she does not believe he is at risk for anything serious. She gave us a list of things to watch for but said we will keep his appt with the surgeon for Friday morning (locally...amazing! He is coming to our city to do a local clinic and they got us an early appt).  

When I asked more questions she said "yes." "No." "yes..." "Yes that would be correct." in all the places I didn't want to hear it.

She said the smell seems to be from the bone...dying.  

From the photo she said it appears as if the gums are open and we are indeed viewing the bone graft very visibly.

As only a realist would ask... I said "tell me what we are looking at. What is done from here." and she replied "we will have to take it all out and start over."  Of course she reminded me she's basing this off a photo but we assured her it's more extreme in person than the photo shows (try getting an iPhone in your child's mouth for a picture).

Tonight...it's Pumpkin Spice coffee...staring at this beautiful face...and a whole lot of Jesus.





Saturday, September 20, 2014

Enough.

He's growing up.  Exactly why my heart hurt for this surgery...because he's growing up.

With growing up...comes hard things.

Learning how to process your thoughts and feelings in far too often...a very cold, cold world.

Besides the miracle of no pain...truly a miracle by the way...is the miracle of how he is really doing.

Last night he laid on our bed and I went up and laid in the dark with him.  He just kept looking at me with that smile.  We talked for a long time. About hard things. And purpose.  And I must have leaned over and kissed his forehead 8 or 9 times in our talk.  There were plenty of those kind of moments.

The moments when a word simply wouldn't do and instead...a kiss said what needed to be said...and what couldn't be said.

Oh how I love this boy.  I have always adored him.  Always. He's always needed an extra dose of Mama's heart...and he's always had it.  No I don't favor him or give him special treatment.  Yes I really had to say that because...yes...I've really had people tell me not to.  And that's ok.  To those people...you should really meet him.  Because then you would know.

Azlan shines.  He shines from the inside out.

There is a sparkle in his eye that gets lots of questions. The dentist has asked "what is it?" the doctor has said "wow...he shines" and people just meeting him have said "he has this special sparkle in his eye". And he does.  And that isn't just those beautiful eyes he got from his daddy...though they melt me every time. This is something from the inside.

A deep knowledge that he is ... enough.

Think about that.  Couldn't we all use a dose of "enough"...?

Life is hard.

People are hard.

What if we truly believed we were simply...enough...?

Not enough as in "no need for improvement".  Nor..."I guess I'll do."

Enough as in...not in a competition.  Not "-er".  You know what I mean.  How often do we think "if only I was ______-er...."   ....?  What if we could live without "-er"...?

Enough.

Azlan has never asked "why me?".  Ever.  He's never looked at the others and said "no fair".

We talked about this last night. I asked him if if thinks that way and he looked at me and said "no...why?" :)

He is more serious. More subdued. But beautiful. And witty. And he's becoming the real Azlan.  He's finding out who he is and all the while knowing...he is ... enough.

Are you?