Friday, April 26, 2013

Family. Health. Heart. Radical.

Dean, Tirzah and Azahria all had a wonderful time in Arizona. Though short, they really had fun. Daddy loved spending time with his little girls. His summary was "seriously...? They are awesome!" :)

They returned super late Sunday night...well Monday morning at 1:30am. Yes I was up and ran out to meet them and help carry the sleepy girls to bed ;)


Saying good bye at the airport


Cute!


What will I do without my girls...?


So excited to be going on a plane!




Taizi has continued to enjoy his freedom of his new eyes...and climbs the stairs regularly. Honestly, he's gotten a little more intense care-wise. I ran upstairs to see him down the hallway and in the bathroom, staring at the toilet. Uhhh...no.  :) Dean said "you know he'll find his way to play in the water, he loves water!" Sounds fun.  Since then he has stayed in the realm of living room and playroom.

Still not super excited about outside but we are ok with that. Ok with the fact that he's not excited about it. He's hard to change but eventually he'll love it, so he still spends lots of time outside.  Consistently putting him back on the grass when he goes to the door...and eventually he stays on the grass and plays with the toys.

Taizi had a bad fall down the stairs. I was standing right in the kitchen and heard something and he was up those stairs so fast.  I ran and as you can imagine, it all felt slow motion. He never breaks his falls. Ever. He never puts his hands out etc.  So I'm watching him...as I'm bolting towards him...slam his face on several steps. No hands. Nothing.

The sad part is...he was hitting hard.  And he didn't cry. I grabbed him and cradled him in an infant hold. Tight.  And walked around comforting him but he never once cried. :(

The next day he had a nice bruise on his forehead and I was surprised no black eyes.

Ahhh.

He is now watched at all times...though we aren't perfect and he gets away pretty quickly...we haven't had him go up the stairs without someone seeing him, since.

Taizi and food.

Oh.  We have stuck with it but here is what we have found:
He loves 2 baby foods.  You would think that to adjust him to other foods, just space out how often he gets his favorites. No. Way.  He will kick up the biggest fit all over again. So we have had to play hardball and remove his favorites completely :(  But...here's the amazing news...he now opens his mouth WIDE for the others! I'm talking, chunky, thick, non smooth texture foods! And he's a texture-finatic!  Serious progress.

Also he drinks zero clear liquids. No water, no juice. Nothing. The only thing he will drink is his formula (Boost 1.5 since his growth is seriously delayed).  Well we started diluted them just to get more water in to him. He's not gaining at any speed anyway...and he needs liquid.  His diaper smells very strong and we know he's not getting enough water.  This has helped a LOT. Today was hot, he was outside and I put ONLY WATER in his cup and he drank 2/3 of it! That was pretty exciting.

Yes. Yes.  He's pretty cute! And hot pink shirt and bright  blue glasses are just oh-so-adorable despite Daddy's objection to any of his boys in PINK! :)

I know it's hard to judge size on photos...but to give you an idea, this is a onsie size 24 months. It hangs inches below his diaper, it's huge! The shorts are 18m and fall right down when he stands. I should have gotten 6-9 months to stay on his waist. This is a child...turning 4 years old very soon :(


Yesterday was Taizi's sedated MRI and CAT scan.  

It went really well. They fully sedated him right there with me standing beside him and he wasn't out for long.  They did however have concerns with how long it took him to wake.

Here he is right after his procedure. He had this big thing in his mouth to prevent him from choking on his tongue. 


After we left, we stopped at a park to let our amazing kids play.  Seriously. They are amazing. Yes, so far we have taken them on every Seattle trek. Hours in the van. Hours waiting. Hours driving home. We always look for a playground for the way home.

Today, our craniofacial doc called. She had both images from yesterday's testing in front of her.

#1. Brain MRI.  It didn't show any significant abnormalities with the brain. With missing parts, texture, etc etc.  However, it did show a very very tiny pituitary gland.  This was very interesting to them, since pituitary is responsible for the growth hormones of the body and Taizi is clearly struggling with growth.  So this will get us in with Endocrinology and further testing to see what they think. 

Interesting.

#2 CAT scan. This was to look for auditory anatomy.
First, it showed that past the bones and middle ear, his inner ear canals (relating to nerves etc) were very deformed and irregular on both sides. Indicating hearing loss at the nerve level.
Second. In the middle ear, his bones are present but deformed and fused together. Interestingly enough this is identical to Azlan's middle ear. He has all the pieces but the bones are deformed and fused. Well when you hear by bones vibrating (moving)...and these are fused...you can see that presents a serious problem. Both ears showed the same severity of deformity at both the inner and middle ears.  

Since these issues are the same or more severe than Azlan's, we are quite aware of the great possibility that this means there is no help for his deafness.

We will see his ENT early May when Zihao and Azlan see him. 

_______

Tonight was Azahria Peace's birthday.  My purple, fantasy princess is 5.  How oh how...wow.  What a sweet girl. She's funny, quirky and if you look at her she freezes.  Ask her a question with eye contact and she just might turn to tears:)   She loves what she loves and I love that. I hate purple. She loves it. She thinks it's funny that Mama never wears purple but that does NOT influence her one bit.  :)

For her birthday it was purple. And unicorns. And all things Azahria.

I will upload and post pictures later.

_________

On the way home from Seattle, Dean and I listened to the audio version of Radical by David Platt.  Spell bound, really...since a friend and I have been talking much of the same way lately.  

My heart was stirred.  Deeply. 

I've often thought just how many of us would follow Jesus today...were He here.  

Think about that.  

Do we follow our version of Him? 

If we look down our noses at the least of these...then we'd look down at Him.  He came pretttttty lowly. And hung out with the 'least of these'.  

If we look more at things than heart...we would have missed Him.

And just how many of us ridicule those who are living a radical life... a life of all out faith and surrender...as being simply crazy and "not using their God-given brain"...?

The longer I live...the more discontent I am with modern day christianity.  

This pew-sitting, go-to-church-Sunday christianity that has infiltrated who we are today.

Don't look around.  Look in.  

Are we so different? Am I...? Are you...?

We give..but not til it hurts.

We live...as if we follow just another religion. Oh yes...we preach otherwise...I see all the facebook posts. I hear the same talk you do.  I'm not referencing our words.  Or even what we consider to be our beliefs.  

I'm referring to our lives.

Our day in...day out...lives.

My friend said something the other day that stuck with me.  Something about being like a child, clinging to your Daddy's pant-leg. Never missing a step. Never missing a moment. 

Can you hear Him?  Can you see Him move? 

I have often thought this blog was more about surrender than adoption.  

It is.

This isn't about adoption.  

This is about surrender.

God could have called us to sell all and move to the heart of Asia. 

The same surrender would have had to happen.

He just so happened to choose adoption for us.  

But it's so easy for us to say "He hasn't called me to that". You may be very very right.

But if you are His...He has called you to something.  

Are you listening?

Are you willing to surrender?

So what if the term "too radical" is thrown at you.  Could we really be 'too radical' in following Christ?  

Many have recently asked us, now seeing the day-in, day-out of life with Taizi (which is intense) if we ever wonder if we 'took on too much'...?   Or if we were "a little impulsive"...? Or if...leaning close..."you maybe regret it"...?

Wait.

You may have missed the entire message of this journey.

We. Didn't. Choose. Taizi.

We didn't have a good idea and seek to rescue. Though as noble as that would be...let me be very transparent....that was not our story.

God spoke. Clearly. Firmly.  He was insistent.  

And just like the man that found the buried treasure in the field and left and sold ALL HE HAD to buy that field...when God gave us Jonah 2:8 and let us know very very clearly...that the true treasure was in the surrender of our will for something much, much, much, indescribably-much...better...

(Those who cling to worthless idols...(easier life, financial comfort, things, etc) FORFEIT the grace that COULD BE theirs....)

Then in that moment we didn't care who thought we were crazy.  You think the many buying this random forsaken field with ALL HE HAD wasn't told he was crazy...? What made the difference...? The treasure was there!  He knew it! He saw it with his own eyes!

What made us recklessly abandon every ideal for our life...? NOT that we are great people! Not that we are just oh-so-amazing and gifted. No no...that God told us that's where the treasure was. 

In surrendering to His plan. His way. His path...the treasure would be eternal.

So do we regret it...? That thought has never once entered our mind.  Do we think "what if"...? Not once.  

Have we looked to Heaven and said "God...you really equipped US for this task...?" Yes. Of course we have.  But do we doubt that He did...? No.  His call was so clear...it would have been an all-out turning our back on Him to say 'no'.  

Yes.  This book resonated with the cry of my heart.  Am I there..? No.  I'm not. But I hunger for it.  For a life of total surrender. "Reckless abandon" as David Platt says.  One that is so focused on the treasure that there's no hesitation to endure the jeers from the crowds at 'selling all I have' to go for it.  

Family.  What a gift He has given us.  9 ... soon to be 10 beautiful children. (I'm almost 31 weeks pregnant!)  From around the world.  All one family.  

Health. We are so thankful for the health of each one.  Taizi's care doesn't freak us out (sometimes autism does).  But we know that He knew...and knows.  And He called.  So not one of these findings are a surprise to Him.  

Heart.  In a life that can be so chaotic...don't let the world squeeze my heart into its mold.  I want to stay soft to hear Him.

Radical.  Stir in me a desire to risk all for Him.  Not say I will. Not preach I will.  But a willingness to surrender each piece of my life to Him.  Regardless of the cost.  

Reckless abandon.

Knowing the treasure is in Heaven.











Tuesday, April 23, 2013

It's just not about me.

Plain and simple.

I came to blog and once I read this...I realized I couldn't.

So everything I was going to update on ... is going to wait. Because this needs to be shared.

My last post was about Christina, but this is FROM her.

Please read her blog post and don't miss it...don't miss it.  There is real true life there and it's devastating to me when people can see this and not really see it.

http://www.christinaahmann.com/?p=1542

Thursday, April 18, 2013

And this is life. True life.

One of my closest friends has beautiful niece. That is dying. She is 31 years old. Has been married for 1.5 years. Has a 6 month old baby boy.

And she is dying.

Like all of us.

She just has a glimpse into the future...and knows how short her time left is.

As I have watched this journey from afar...I have seen what a Christian's death should look like.  The ultimate surrender into something perfected and beautiful.

I have been left spell bound at the courage...and perhaps more than human courage...the vision. The sight of what is absolutely more concrete...more authentic...than anything we can see with human eyes.

My friend and I were talking this morning and we talked about 2 Corinthians.


2 Corinthians 5:1-17

New International Version (NIV)

Awaiting the New Body

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, because when we are clothed, we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life. Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.
Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. For we live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord.


What struck me while she read this passage is  verse 4.  "so that what is mortal...may be swallowed up by life".  

Woah.  What?


This isn't defeat? Dying isn't 'cancer winning'...?


Loud and clear I heard "LIFE wins".  True life.  


When Jesus died and rose again we SAW his life winning. We saw that he defeated death.  We saw the evidence of the resurrection.  But when a born again believer dies...we only see the death.  Oh...but let not your heart be troubled.  Life wins.  You can't see the resurrection...but the moment death happens...Life 'swallows it up'.  Everything Christina was created for...begins.  Death is just the doorway into her real life.  Heaven is so real.


This blogger wrote about Christina and I wanted to share her post:


http://hearingtheheartbeat.com/2013/04/15/how-to-live-the-resurrection-now/

Tuesday, April 16, 2013

Taizi has EYES!

Ok...in our family Azlan's 'ear' is something he attaches to a screw since his real ear doesn't function at all...for all purposes, the BAHA is his ear.

Well...after finding out Taizi is legally blind in his right eye...today was his first day wearing glasses...so he has EYES! :)

The kids were so excited.  We sat Taizi on a trunk in our kitchen and put his glasses on.  He flexed his hands like crazy, slapped his legs, and screamed like someone was torturing him.  He, however, did not reach for his glasses! And in between screams he would look around very intently! It was so cute seeing 8 other little children anxiously wait to see if he'd stop and appreciate his new EYES!  Well...he did not.  He screamed for what seemed like....ever.

Change and Taizi...woah.

We were told at Children's last week that "autism diagnosis won't be discussed til he's been home for 1 year...but he has all the symptoms". Good because we weren't asking for it and honestly...it's a little terrifying for me.  Yes...I know. His symptoms are pretty extreme...autism is nothing in the scheme of things.

Well we held him, walked with him, pointed at lights and did everything for about an hour.  Then gave him his milk...we sure tried but he was pretty intent on letting us know he was not happy and even if it did give him sight...it was much more important to let us know he was MAD :)

But. We have seen that if you stick to it...he caves. Relatively quickly. As long as your ear drums are not blown from his extremely loud screams.  :)  It was about 1.5 hours of him kicking his way through this change but we never took them off.  And ... then he sat there all day and played, ate, and explored with his new eyes!!!





His focus changed big time! He seemed more connected with us...(helps to see!) and with things.  We could totally see the difference.

The crazy part came later in the day. I was scrubbing bathrooms like a crazy (who needs nesting...this is my life!) and the kids were in the playroom. I had just left Taizi in the living room with his little pile of toys.  You have to understand he does the same thing every day.  Even when we put him in the playroom, he's usually unhappy b/c it's not "his norm".  The kids kept coming down and checking on him.

All of a sudden I hear "Mama...come quick you are not going to believe it!!!!!" and lo and behold Taizi was 2/3 of the way UP THE STAIRS!!!!  We all stood there clapping as Zion quickly went behind him in case he fell (which I highly doubt he would).  He was crawling but not on his knees, he was using hands and feet.

Why is this so amazing...? Because as PT said he shows zero initiative.  You can put his bottle on the coffee table and he will sit and stare at it for over an hour!  He wants it but not enough to get it.  Well....to show the desire to go upstairs where we were and to actually do it...was amazing!  We have no idea if it's related to seeing...or if that is purely coincidental but ... after 5 months it's a huge first!

He then came up and sat in the playroom and found toys to play with!

I texted Dean and he was blown away.

Here he is when Zion had just come behind him! Look at that determined look on his face...I still can't believe it...


And yes...he has bright blue glasses.  Glasses double as a fashion accessory in our house ;)

In other news...when we purchased the van last March we knew we would eventually need a second, smaller car.  We do a lot of running around...in a 15 passenger van.  And...since it's the only vehicle that fits our entire family, it makes it difficult if I have to take 2 or 3 kids to the dentist, etc, b/c then Dean is stuck home and can't leave.  We purchased the van March 2011 and we love it. 

We seem to be the ultimate ebay - vehicle purchasers.  This time, is no different.  I kept coming back to this one in particular b/c the listing was vague.  The car looked spotless and brand new.  So we contacted the seller and umm...the vehicle is loaded to the max.  Even customized options that he later added.  Seriously...he spent a lot of money on this car.  Crazy.  But he's selling it thousands under blue book value.  So we made the decision that this would be a great second car for us and if we decided to sell it in 2 years or so, we will likely sell it for close to what we paid for it as we did with our Suburban.    The car is in Phoenix.  A close friend and I were going to fly down together and drive home and that would have been such an amazing trip...but...the dates didn't work for her. So we found really low flights and surprised two of our children.  We wrote letters and placed them in our mail box, knowing that Tirzah and one of the other kids get the mail each day.  She came back soooo excited that there was a letter for her and Azahria!  It was a personal invitation for one amazing Daddy-date! ;)  It was so cute seeing their reactions! With $89 one way flights (taxes incl!!) they will make some amazing memories on their short little getaway with Daddy.  






Thursday, April 11, 2013

Doctor Visits. An Amazing Gift. Life.

We had appts in Seattle this week. NeuroDevelopment appts including PT, OT and nutrition.

OT was great.  (Occupational Therapy). She loved Taizi and her summary was "hmm. He's a mystery, isn't he?" :)  The great news from that visit is the entire wall was a mirror and he showed ZERO interest in it! I was shocked!  We've kept him away from mirrors for 5 months and clearly that is moving him in the right direction of interacting with others instead of just zoning on his familiar world.

We then went to Physical Therapy.  This was funny.  Taizi started laughing hysterically and the PT thought it was so cute until I told her this means he's scared and wants out of here. Just to prove my point I suggested we put him on the mat so she could see him crawl. "You think he will crawl for me?" "yah...just watch.". He crawled. And crawled. And crawled. And did not stop. All the way off the mat and down the very very long hallway to the door! He wanted out!! :)

Here he is! She was shocked. She kept saying "leave him he'll come back" Nope. He didn't even turn around. He wanted out of there!  I walked down the hallway and stood by him and put out my hands. He reached for me. But was very disappointed we did not go out the door! 

I asked her if we could try a small walker with him as I believe he would use it! She got one, it was so cute. She had removed his pants, shoes and socks to watch his movements. She said he does need orthopedics but was afraid he would rely on them too much so she wants him to develop more muscle first. 

How cute is that? :) He has a prescription to get his very own!


It gets a little long sitting in 5.5 hours of doctor appts. Me at 28wks pregnant...just so you know I was truly there...! :)


From there we met with NeuroDevelopment going over his plan and that one of my favorites...nutrition! I LOVE LOVE LOVE our CranioFacial team. They love Taizi and we just love working with them. Well, the greatest compliment I have ever received was when my nutritionist asked if I was a Christian. I was shocked and said "yes, I am!" she smiled and said "I knew you were within moments of meeting you...you shine."  I think our greatest prayer in our life is that Jesus would shine through us and our journey.  

We talked about both of our families and she talked about her own son who was born with severe special needs. She said everything changed when in a moment, she surrendered and realized the eternal perspective of what she was doing. Day in and day out 24/7 care...all the headaches of that changed when she saw this from God's view.  And it transformed her own heart.  Oh..how we relate to that.  The toughest call God has ever given Dean and I...is the call to Taizi.  I feel so poorly equipped it's not funny. It feels so overwhelming in every selfish regard imaginable.  Yet we know that we know that we know...He called us to him.  And we see the changes in our hearts...our own lives...because of Taizi.  And it's all about daily surrender.  This isn't about me, Lord. Help me see...this just isn't about me.  Loving Taizi...is about loving You.

We went to our friends for the night. Got the kids tucked in for bed and we stayed up and chatted with our friends. Our kind, generous friends that with little notice opened their home to our large family to bunk wherever we could! Amazing.

We left at 6:30 ish the next morning for Taizi's sedated procedure.  Taizi, Izrael and Zihao (always Zihao) had been very sick with a bug all week. We were nervous about this b/c obviously for any sedated procedure you should be healthy.  Taizi still had a bad cough and really congested nose.  We called as we got closer and they said "no...we need to reschedule".  Honestly the only pain was that we woke so early when we could have slept in! :) But other than that, we would rather err on the side of caution. Besides...we go so frequently...it's totally ok. We rescheduled for 25th. Maybe we can combine even more on that day, I'll call ENT to see.

We got home in good time and got everyone tucked in early.

As I was brushing everyone's teeth I saw Azlan's head as he turned to get into bed:


Lovely.  Oh...lovely.  Non stop. April 18th marks 1 year since his surgery.  And we have had this exact thing happen NON STOP. It oozes something, gets red, swells rediculously then goes away. Repeat.  Ahhhh!  Clearly it's not an infection b/c he's been off antibiotics for a long time and it's the same cycle. But perhaps this option is worse. It seems to be an allergic reaction to the titanium or a better way to say it is...his body is rejecting the implant.  

This morning it was much more red, swollen and had clearly had continued to ooze through the night as we had to remove all the dried goo from around the screw. So glad to be able to be working with Children's now and getting the care he needs.


Today during school I remembered I had received an email to call Make A Wish.  I made that call at 9am.  This is how it went:

Me: Hi, I'm calling for ____ who emailed me a few days ago to call...?
Her: Yes! What is your child's name again?
Me: Taizi Walker
Her: Yes let me look up his file.  Oh yes....he has been approved to make a wish!!!!
Me: Oh. My Goodness! :)

I got off the phone and told the children who erupted into a full blown celebratory dance! It was pretty amazing.  

What an incredible organization. I hope this encourages people to give generously to them.  Our family has been spending a lot of time on Taizi's medical care and there is no end in sight of that. Our 8 other children have never once complained, never once...about endless hours to Seattle (7+ hours in the car each trek!) and endless hours in waiting rooms and cold, rainy, Seattle playgrounds while Mommy is in the office with Taizi.  It's so wonderful for all of us to receive this amazing, amazing gift right now!

The wish we believe Taizi will most enjoy is a trip to Give Kids The World, Orlando, Fl.  For a few reasons. He loves activity. He loves being out and busy with the family.  And...we hope to be able to meet with my entire family there! And we know...if he could express it, he would wish for that too! :)









Monday, April 8, 2013

3 years. And more.

April 4 was the third anniversary of Chazano and Zunduka's gotcha day.

I know the norm to say is "I cannot believe it's been three years....!" but in the spirit of total honesty...we can. :)

Adoption is more work than anyone can ever prepare you for and is much more worth it than you can ever anticipate.

Both boys have come a long ways in many different areas.

We celebrated. We made a cake. The kids painted pictures showing how happy they are to have C and Z in their family.

My favorite part was before we ate our cake and icecream we prayed around the table.  Chazano and Zunduka were last. No child had any warning it was just "let's do this".

Azlan: "God....thank you for bringing Chazano and Zunduka into our family and they are not orphans anymore. Help them to keep having good times in our family"

Zion "God...it is so awesome that you cared about Chazano and Zunduka long before we knew them. Thank you for bringing them into our family. We love having them as brothers!

Tirzah "God...thank you for loving orphans. Thank you that Chazano and Zunduka are not orphans anymore and thank you for telling Mommy and Daddy this is what you planned for us! "

Azahria "God it is so special that you told Mommy and Daddy to adopt our brothers. We love our brothers and thank you for them. Thank you Mommy and Daddy listened to You"

Zihao (fully prompted) "God...thank you for Chazano and Zunduka"

Izrael (fully prompted) "God. Thank. You"

Chazano: "Thank you God for giving us a forever family. Thank you that they love us and we love them and we now have a family. That is very special"

Zunduka: (mr serious) "God...Thank you that you love everyone. That you loved us way back before we knew You. That you knew we would be in our family with Mommy and Daddy someday and thank you that you told Mommy and Daddy which kids to adopt b/c we are glad it was us".

Seriously. Eat your cake after that! :)  I had such a lump in my throat.

And ... the pain of that day gets less each year. To those of you that have never lost a pregnancy...I know how difficult it is to understand. But ...yes...3 years later and all that has transpired in our family and the loss of that precious baby inside of me in the heart of Africa still brings tears.  The emotions of that day could not be more beautiful and devastating all at once.

He is the healer. He, alone.

Someday I will read Chazano and Zunduka's story. The blog of their adoption. I tried once...when I was pregnant with Izrael and all of a sudden, overcome with extreme emotion I ran into the bathroom. I locked the door...slid down the wall onto the floor and fell into a fit of sobs. Wails.  I could feel the bugs around me in that bathroom. I could feel the complete emptiness that came with the moment I look at our child.  And I relived that moment and wailed as my husband knocked on the door with a quiet voice "janice...janice...are you ok? Can I help...? Can I hug you...?" and I couldn't move.  I was frozen.  After many minutes I got up and splashed cold water on my face. I looked in the mirror...I saw a pregnant belly with a miracle.  Yes...a beautiful baby Izrael was on the way. Yet I was mourning that baby I said good bye to in Africa.

That is the pain of miscarriage.  Each one has its own story.  Each one containing its own hopes and dreams.  Each one...the excitement, the anticipation...turned into despair.  The heart wrenching ... searing loss of knowing the baby was gone.  Gone...but not forever.

Three years later...April 4 has more joy than pain.  But I will never forget.  Never...ever...forget.