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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?


Friday, September 19, 2014

One Amazing Update.

Azlan is now 3 days post op...and is off all medication and 100% pain free.  He never had pain at all. It just never came.  The surgeon said "that would be highly highly unusual as he had a LOT of bone removed from his hip".  Well...we had a LOT...a LOT of people praying for no pain for Azlan...

The only pain he's had at all is more of a weakness. discomfort when he walks. He limps quite extremely which is totally expected.  We carry him up and down stairs and anything further than a few steps.

His personality is subdued.  Sweet. Subdued. Definitely not sad.

He asked to sleep beside me last night saying our bed "is comfier" ;) It worked. He slept beside me all night long and every time I opened my eyes... I stared.

Today he got a very special box in the mail from a very special friend of mine that Azlan has never met. She sent a box with daily envelopes and gifts starting with a youtube video her and her children made for him.  It's called Operation Smiles for Azlan. Seriously. Totally amazing.

Here's a few pictures of him opening his first envelopes. One piece of the puzzle went missing but it was still adorable!!

Then $10 with instructions to go on a milkshake date with Mommy!








A picture of him laying down showing the incision on his hip. The cut is much higher than where they took the bone from, we were told.

Thank you for praying for Azlan.  We shouldn't be in shock that he has indeed had no pain.  Because...God works like that. He loves showing how amazing He is and having everyone spin their heads!

Wednesday, September 17, 2014

The day after.

We are doing fantastic. Azlan is on a lot of pain medication and he hasn't felt anything yet.

He slept really well. I woke this morning to giggles over his bed as the two nurses were laughing at his sense of humor.  I then heard him say "I think I've been in this bed for about 21 hours now" :)




Every nurse has run her fingers through his hair and several have asked if it's natural color :) Yes...with a little help from some dessert sun and lots of summer swimming!


He's been laying here in bed listening to this song over and over. He loves it and listening to him sing it out, completely off tune (he is his mama's son) couldn't  be more precious.

Listen and let him know if you like it too.


Tuesday, September 16, 2014

September 16, 2014.

I tried to avoid counting down to this day...interestingly...that didn't slow it down one little bit.

Today arrived.

With sunshine.

In and out.

On the way to the hospital, we turned the music up and we sang. We all sang. The baby clapped her hands and laughed...everyone else belted it out.

"I want to be like...Jesus...!"

"You are...bigger than any battle I'm facing...!"

We sang.

Then we stopped at Target and went toy shopping. Nana and Papa sent money for the kids and we had fun. The best  part is how creative our children will be.  They each got $5 to spent (except Azlan) and instead of each buying a small thing...yes...that's right...they combined their money! Brilliant.  The girls all got a tea set and the boys got Legos.

Then all the big kids hugged Azlan and him and I went inside.









Excited about his new Lego set from Nana & Papa!



Cuddling with his lion that Tirzah bought him. (She's lovely)


We opted to give him the oral sedation just to relax him.  He was doing amazing but I knew he was nervous.  He responds to that really quickly and got silly and floppy :)


Cuddling with Mommy as the time is getting close. 

They asked if I wanted to go into the O.R with him until he was asleep. Absolutely!  So I geared up and he was so funny. He kept staring at me trying to figuring out what in the world I was doing. :) The doctor offered to take a pic...so glad she did!


I went in and got to hold both of us hands as he breathed into the mask. His arms went a little crazy right at the end and they quickly whisked me out of there :)

I met Dean and the kids out in the playground and it was beautiful out. We opted for them to go to the Zoo since it was so nice out and I had to stay in the hospital.  

I had a quiet lunch full of deep thoughts.

After lunch I was in the stair well and I thought I heard "Walker" but obviously kept walked. When I got to the top, someone tapped me on the shoulder...and it was his plastic surgeon! So he was calling me!  

We went to a quiet place and talked.  He said it went exceptionally well.  He went into great detail to explain what he did. It's crazy.  They opened up his right hip bone and in his words..."scooped out some bone". He described both the outer and inner bone that they use. The one being soft and pliable.  

Ok so here's what he told me:  basically when you look into his mouth, you would have seen a gap in his gums or upper jaw bone.  A cleft...or a gap.  However...that small gap, he explained, was like the tip of an iceberg. As in...you see a small piece but beneath the surface it's huge.  Yes. That.  I had no idea. So he said that bone that is missing...is not just this tiny piece in the gums but instead goes all the way up to form the base of the nose. When they repaired his lip, they did it with soft tissue but he still had no bone base under his nose.  Until today.

Here is the crazy part. He said that gap when he got all the way up to his nose was "huge".  As in well over an inch wide.  I asked if that correlates with the size of his cleft lip at birth and he said "Yes, identically".  So yes...his cleft at birth was huge. Over and inch wide.  This surgeon was in the O.R for that surgery but just as a resident. Well he told me today that one his way out of surgery, he bumped into the Dr who actually Dean Azlan's lip repair. He is an older man and totally remembered Azlan. He said "with a name like that..." :).  He told our surgeon today that "woah...that was a huge cleft".  So picture a triangle.  You see the smallest piece in the gums but the higher you go, the wider it gets. THAT is what was repaired today.  So they took hard bone and filled in the gaps and then with all the marrow (inner bone), he formed it around the soft bone to hold it into place. Firmly.  Because that's all that is holding it in.  

Crazy.

Crazy.

He said this will actually lift Azlan's nose because now he has a bone base, which he has never had before.  He also found a hole in his palate that he repaired.  

The hip will hurt.  A deep, bone pain. Because...that's exactly what it is. 

The mouth will hurt and feel very strange, because, for the first time in Azlan's life, he doesn't have a huge gap in his mouth. 

He woke in recovery crying.  A lot of pain in his mouth.  He went from an "8" to a "4" with lots of medication.  We were able to move to the floor and our nurses have been amazing.  

The one we have tonight has worked in pain management for years. She said the trick is staying on top of it before it hits. Because his hip is so numbed from the local given during surgery, he has zero hip pain. But .. once it wears off it's unbearable.  So that's what we are going to do...stay on top of it.  He will be woken through the night with medicine and I support that 100%.  

The greatest risk after today is the bone graft not taking or infection happening in the mouth. With so much bacteria in the mouth, that's the problem.  Please pray that this doesn't happen.

They want him to walk as soon as he can to bear weight on the hip.  This can be very painful.  He won't be allowed to play sports, playgrounds etc for a minimum of 6 weeks.

Interestingly, the bone will not be visible on X-ray for at least 6 weeks ... so until then, we don't know if the bone graft was accepted by the body. 

Remember I blogged about "the gift of Whitney" a while back? Well guess who met me in the waiting room? Miss Whitney herself. With a gift bag for Azlan.  He loves his gift, a beautiful cowboy hat blanket! 

Then his nurse had him pick out a pillow and of course we got silly with the chicken one so that's the new pillow :)

Ahh.

Thank you for your prayers for our family.  Thank you.





Why is today so hard? Because today marks the beginning. The beginning of the next phase of Azlan's journey. The phase where he's having to spread his wings and fly.  Digging deep into what he knows and believes. Rooting his own faith deep in his own God.  Walking with dignity and gratefulness...and humility.  

As an 8 year old boy that has been deeply loved since his heart first started beating...long before he took his first breath...he knows he has purpose.  I've never heard him ask "why me?' Never.  He's never looked at his healthy siblings and asked "why...not them?"  We talk of purpose.  Purpose.  One day...you will see this was one of the greatest gifts you have been given. Because it molds you. Into someone...you couldn't have been without it.

It's not a dead end road....mister Azlan.  If it takes you...to where you needed to go.



Thursday, September 11, 2014

I'd be lying.

If I said I was doing ok right now...I'd by lying.

That's the truth.

The lump in my throat has turned to watery eyes. And a stomach that is flipping at all points in the day.  I feel like I could ... be sick.

Yes this is where I'm at with Azlan's surgery coming up.

I've been dreading this day for far too long and it's here. It's here. It shouldn't be here yet.  It wasn't supposed to be here for a few more years. But it's here. The severity of the issues in his mouth has pushed it up much sooner than we anticipated.

Today he had a dentist appointment for a chunk of his tooth that fell off. Glad we found this now as it would be awful after his surgery.  Dean took him to the appointment while I did school with the others.

Azlan came home different. He had his hands in his pockets. He was quiet.  He looked awkward.  He was very subdued. When I asked how it went, he said "good".  He looked down a lot.  I saw watery eyes.

Dean said he was like that from the moment they left.

He knows it's coming.

No...please don't let his spirit be shaken. Please.  We have worked so hard to make him know just how special he is.  Purpose.  Plan. Special.

The lump in my throat got bigger.  I feel sick.

Yes I could tell you all how strong I am...but I'm not.  This is my son. This is the baby I've fought for from his first heartbeat.

This is hard.  It was hard at 5months...but here I am with him at 8 years...and this is much harder.

He knows. He ... knows.

This is his biggest surgery yet. His most painful. The longest recovery.

Bone taken from his hip and implanted into his mouth.

Crutches and drinking liquids for months.

Oh Azlan.

It's not a dead end.

I'll keep telling myself that.  Someday we'll look back and see that amazing empathetic heart he has and know it's all been worth it.

There is always purpose.

Nothing is wasted.

Even my tears.

We can do hard things. We can do hard things.

We.

Christ in me.

We.

We can do hard things.


Sunday, September 7, 2014

It's not a dead end.

Tonight.

After a wonderful day with our children at the water park, we came home and fed them, bathed them, put them to bed.  We were tired. We decided to see if there were any movies that caught our eye.  We are really picky.

The one Dean looked up...wasn't on Netflix but it suggested a list of movies.

The first one that came up...I read the description and said "yes. That's it".

We sat down to watch it.  It had me from the first 5 seconds.

I won't tell you the story line...because I want you to watch it.

Remember we are really picky when it comes to movies.  Really picky. No comedy.  No sexual scenes.  It pretty much has to rivet us to the core and make us grateful...make us think deeper...make us love more pure.  It has to do something.  Change us.

So...yah...we don't end up watching a lot of movies.  But when we do...they are war movies...or true stories...or something just...deeper.

Tonight it was this movie.

When it ended, I said this "there has simply never...ever...been a movie to impact me so deeply.  Ever."

I got up and went to the bathroom...leaned onto the wall...and cried.  Cried the tears that came from somewhere so deep inside...I think I had convinced myself to forget about them.

The one line:  "It's not a dead end...if it takes you where you needed to go."

The deepest pain in my life...has taken me somewhere I needed to go.  And that...that is why I cried.  Real...deep...from the gut...sobs.  He makes beauty from ashes.  Each pain...each deep wound...each cry from the depths of my being that screamed "where are You, God?"...each one...was not pointless. Was not a dead end.

It took me here.  Today is the result of what I thought were wasted years. Horrible pain.  Wounds that seemed they would never scab over.

Wherever you are.  Whatever it is.  It's not a dead end.

I know...I know what you are thinking.  I have ... been...there.  There...where it's easier to blot that time of my life completely out of memory.  That...there.  I'm sure my 'there' is different than yours. We all have our own stories.  We all have pain.  We all have wounds.

It wasn't a dead end.  It wasn't wasted.

It took me where I needed to go.

Yours will too.

We can all have hope.

Please...please watch it.  It's free on Netflix.

Come talk to me after you do.

"Unconditional".




Wednesday, August 27, 2014

The gift of Whitney.

We drove 4 hours to Seattle for a quick...but necessary appointment to give Azlan clearance for his big surgery coming up.  With his scoliosis they needed new X-rays to show he's ready to go for mouth surgery.

His medical assistant...she walked in and said 'hi'...but there was something special.

We chatted briefly about seeing the doctor and she left.  As she stepped back in, little Nazara was walking around the room and caught her eye. She said how cute this little baby was and then commented on her own babies.

She has two.  One 3 year old and one just a month older than Nazara.

When she came back again we had a few more minutes to chat.  She softened every time she mentioned her two baby girls.

Conversation somehow turned to family and life and future.  She spoke up and said she can't have more children because of brain cancer.  Um. Yes.  That stopped me in my tracks.  Brain cancer? Who? The baby...? You...?

Her.

She's sitting in front of me and I'm trying to process and stay with the conversation.  She's so young. She has two little baby girls. She has brain cancer...?

The more she talked ... the more awestruck I was.  She was diagnosed in pregnancy with her youngest daughter. They waited til it was safe to deliver her and then treatment and surgery. This was a cancer "normally found in 55 year old men".  Ok. I've heard of that before.  Christina.  That's the cancer Christina had.

She showed me her scar ... which was barely visible.  From her forehead all the way down her head into her hair.   She's so young. She's beautiful.  She's sitting in front of me and as she's telling me how they got all the cancer but she gets scans every 3 months to look for a sign of it...

She said this.  "They gave me 3-5 years".  Everything in me wanted to say..."for...?" but I knew what she meant.  For life.

She's 28, if I remember correctly.  28 years old. Married. A mom of 2 little babies.  3-5 years.

I found the words to say I didn't believe our meeting was by chance.  She agreed. She spoke openly of faith and courage and hope.

Three to Five years.

She had so much joy.  We spoke of how none of us are invincible...yet we live as if ... we are.  How she is trying to live every day as the gift it is.

That day. In that room.  Having driven 8 hours round trip with 10 children for this 30 minute orthopedic appointment.  I realized the gift I had been given.

The gift of being challenged to live my life...thinking I have a 3-5 year lifespan.

What would I do differently?  I would love purer.  Deeper.  With great abandon.

I would seize every moment. Every day would matter. Every single day...would matter.  Nothing would feel mundane.  Breakfast with my children...? A gift.  Another day...another gift.  Bedtime prayers and kisses and hugs...times ten...? A gift.

I would live.  I would make a conscious choice to live.  To live with purpose.  To live building memories to last a lifetime for my family.  To live with passion. To live...without fear.

I walked out of that clinic room...different.  Lighter.  Free-er.

I was given a gift.  A huge gift.  The gift of living with a 3-5 year lifespan.  The gift of perspective.  The gift of courage.  The gift of realizing...again...I'm not invincible.

The gift of Whitney.