Wednesday, April 30, 2014

A Little Note from Jon on His Birthday....

Jon posted this picture and the note below on his Facebook page yesterday - his birthday.
I wanted to make sure all those reading the blog got to see it too.
My husband is my hero.

Redemption is connected to our brokenness. Everyday I fight the urge to hide. Hide my smile. Hide my brokenness. But hiding yields no impact. Courage is a decision and courage yields great rewards.
Courage has the power to change the world.
Today, choose to come out of the shadows and be fearless. Share your life. Give it away. Love with abandon. Risk humility. Chose life.

Tuesday, April 29, 2014

A Little Medical Update...

Today was a LONG day.  Today was the day we went to see a new specialist in Beverly Hills regarding Jon's eye.  We pulled out of our driveway at 8:30am and pulled back in at 7:30pm.  Jon lives with daily eye pain that we know is largely due to the fact that he cannot blink.  Because his eye cannot close, it dries out, stings, or as he describes it, "Feels like an ice pick in my eye."  Since we are not fans of ice picks in our eyes, we have been trying to find a remedy for this issue.  As we have found with every area of science/medicine.... everyone has their own opinion and recommendation.  One doctor recommended Jon have a gold weight put in his eyelid to help his eye blink.  Another doctor said that the gold weight will be successful during the day, but gravity won't work in his favor while he's laying down to sleep.  So another doctor recommended a Tarsorrpaphy which is a procedure in which they stitch the eye partially closed.  This allows the eye to blink fairly well, but also protects the eye (specifically the cornea) from particles in the air etc...  Yet other doctors find the Tarsorraphy to be an outdated procedure.  The doctor we saw today does a special procedure where they would put a Spring around Jon's eye. Similar to the end of a safety pin, there is a part of the spring that goes on the top eyelid, coils around the corner of the eye, and then a part of the spring that goes along the bottom lid.  When this method is used with the 3rd nerve in the brain (the "eye opening muscle" - which was not injured during surgery), the eye is able to open and close.  The doctor we saw today is known for creating this Spring method.  We found out today that he didn't actually create it, but he was the one to perfect it.  ;)  Until recently, he was actually 1 of 2 doctors in the world who does this procedure!  (the other one is in Paris)  He did recently train the staff at Harvard, so now you can only get this procedure done in Paris, at Harvard, or with our Dr in Beverly Hills.  I'm not sure if that's cool or weird.  ;)  He has done the surgery over 1000 times, so that is a great thing - and he was recommended to us by the head of Neurosurgery at USC.  Anyway, after hearing about the procedure (which does have its own set of side effects), we decided it is a great option, but we want to wait on this particular procedure a little longer.  Jon is 7 months post-op, and although the procedure can be reversed if needed, we think it is a little invasive to do this early on.  We want to give Jon's facial nerve plenty of time and space to heal - so we would want to wait at least 12-18 months post-op before doing this surgery if we can.  Time will tell.

In the meantime, we are looking into a few "stepping stone" procedures/methods to help get Jon some relief from the pain while we give his body/face/nerves time to heal.  Jon was fitted with a special "contact lens" today that was put in his eye and will stay there until his next appointment in 1 month.  This type of contact lens is used to help protect Jon's eye/cornea and also to help keep moisture in.  The doctor is hoping this will help alleviate some of Jon's pain.  Unfortunately, this contact has only been in Jon's eye for about 6 hours and he is going nuts - in so much pain and it is very uncomfortable for him because he can feel it, etc..  Not many know this about Jon, but he has a "thing" with his eyes.  He was bit by a dog near his eye at a very young age, so he has had a life long "issue" with anything going near his eyes.  I've never been able to brush an eyelash off of his cheek or anything.  When the nurses wanted to put eyedrops in his eye in ICU, he batted them away.  Not on purpose, but just his reflexes kicked in.  So as you can imagine, this whole eye issue has been THE WORST thing for him.  Of all the things in the world that could have happened to him, this is the one part of the body that he is squeamish about and of course, the one thing now causing him the most trouble.  I'm not certain Jon will be able to keep the contact in for the full 30 days.  If you know Jon, you know he will sure try!  But it's going to be difficult for him.  Would you pray that the contact will "settle in" and won't bother him?  And that he will in fact find relief from the pain with it in?

If that doesn't work, we will start the surgeries.  First will be a surgery to put a plastic piece underneath the eye, above the cheekbone.  Underneath Jon's eye - his bottom eyelid (whatever you call that) is sagging, which makes blinking an issue.  The doctor thinks that by raising that part of the under-eye, it will help his eyelids to meet easier.  We also might have the gold weight put in at the same time, if we do that surgery.  The gold weight seems like a good "stepping stone" toward the Spring.

Honestly, the reality is we don't know for sure what we'll do or not do.  We shall see.  It was a lot of information to take in today.  It's one step at a time and right now, the contact lens is our "step."  We are also trying to buy some time to get us to September, which is when our "Open Enrollment" is and we'll hopefully be able to switch to a PPO.  Oh the details... So many details....

While I am updating with medical stuff, allow me to share some more news!

We have a friend we met via Jackson's baseball team this season.  She works at Hoag Hospital in Newport Beach and offered to take Jon's MRI scans to work and see if she could get someone to look at them for a 3rd opinion for us.  (in regard to the tumor re-growth and what course of action to take...)  We just found out that all of the Neuros at Hoag are meeting for a special Board gathering and they have decided to use Jon's case as an official "Case Study" that they will present and work on THIS THURSDAY!  They will look at Jon's notes, study all the details of what has happened with him to-date, and then decide on what course of action they would recommend!  What an amazing gift to have so many brilliant minds looking at Jon's case and offering their wisdom.  We are SO grateful!

Well I think that's it for now.  It's almost midnight after a very long day, so I'm not sure any of this made sense.  I'm not even positive I made one complete sentence.  But I wanted to at least try to get some of the updated info out there.  Because you have prayed.  And we are grateful!

Love you all.....

Monday, April 28, 2014

Happy Birthday, Jon...

I have watched Jon in a season of abundance.
I have watched him in a season of need.
I have watched Jon in a season of adventure.
I have watched him in a season of desperation.
I have watched Jon in a season of testing.
I have watched him in a season of loss.
I have watched Jon in a season of blessings.
I have watched him in a season of uncertainty.
I have watched Jon in a season of want.
I have watched him in a season of contentment.

I have had a front row seat in his life and also a backstage pass.
I have seen him in public.
I have seen him in private.

There is brokenness and faithfulness.
Together.  Brokenness and faithfulness.
It is beautiful.
Not perfect.  Beautiful.

Happy Birthday to the man I call
my husband
my friend
my partner
my lover
my confidant
my good and perfect gift.

It is my joy to celebrate you today.

Friday, April 25, 2014

Just Show Up...

I have a friend named Michelle that I met when our oldest kids entered Kindergarten.  She's fun and thoughtful and kind.  But best of all, Michelle shows up.  You have a need?  Michelle shows up.  You are in a jam?  Michelle shows up.  I recently had 2 babies throwing up at the same exact minute and a husband who wasn't home.  Michelle showed up at my doorstep with Starbucks, a muffin and 3 bananas.  :)  Michelle's dear friend has a husband in the hospital at UCLA with Leukemia.  Michelle drives there at least once a week, whether she's invited or not.  Her motto?  Just Show Up.  She offers to grocery shop or babysit or pour a glass of wine.  :)  She doesn't wait to be invited or for her visit to be approved.  She just comes and serves.

I remember my dear friend Jen showing up when Jon was admitted to the hospital.  I told her not to come.  What could she possibly do?  There was nothing to do.  But she came.  And I look back and realize I could not have done it without her.

My dad was at the hospital (driving from SD) before I even got there after jetting home to gather Jon's things.

I remember my dear friends Brian and Yvonne showing up.  Driving from Fresno with no warning and appearing in Jon's room in ICU.  Their presence screamed of their love for us.

Two weeks ago, I got a text from a long time friend who lives up near Sacramento.  My friend Rissa asked if there was an evening this week that she and her hubby Ryan could take us out to dinner.  I was SO excited that apparently they were going to be in our area for the week and were able to carve out a night to spend with us.  We settled on Thursday night at 6pm.  Thursday afternoon, I texted Riss to tell her I was literally counting the minutes until I got to see her.  She texted back that she was so excited too, and said something about LA traffic etc..  Well that's fun, I thought.  I knew they were staying at a hotel in south Orange County, so I figured they must have driven into LA for the day to do something fun.  When I asked her where they were, she said they had driven from Oakdale all day.  What!??  I was so confused.  These are the texts that followed:

My heart about stopped.  I got emotional.  Jon and I are so not worthy of someone making a drive like that JUST for dinner.  We are so not worthy of them having to farm out their 4 kids for 2 days on our behalf.  I could not believe it.

When they arrived at our home, they shared with us how their extended family had covered their expenses and sent them down with the task of treating us to a nice dinner out.  We were floored.  At the end of the night, as it was pushing midnight, my heart was full.  Fuller than full.  Overflowing.  Their presence was such a gift.  We are known by them.  Like, newlywed, 24 year old, pre-kids, hang out every day of the week kind of "known" by them.  So spending time with them is like a refreshing drink of cool water.  It is warm and fuzzy.  The conversation is real and heavy and hilarious and full of All the Good ingredients.  At the end of the night as we hugged the longest of hugs, Rissa said, "We didn't know if you still thought of us as Your People.  We know you have people.  We haven't seen you in so many years.  But we just had to come."

That statement SO resonated with me.  I often hold back from "showing up," out of fear that maybe I'm not someone's "people."  I fear that they have others that they are closer to.  Others that should be there instead of me.  Will they think it's weird that I'm here?  Will they think it's random that I'm emailing? That I'm calling?  That I drove this far?  Fear.  Insecurity.  Etc. Etc. Etc.

Ryan and Rissa showed up.  They ARE our people.  Of course.  But over the past 6 months, we have had so many people, near and far, who have loved on us.  Who have shown up.  Who have been extravagant in their expression of "showing up."  People who we know very well. And people we had never even previously met.  Strangers have prayed for us, strangers have made our kids blankets.  Friends from long ago have sent cards and gifts.  College friend's kids are praying for us every night.  Church staffs we've never even been a part of are praying.  People have dropped off a meal, while introducing themselves for the first time.  Other friends we see regularly and have not grown weary in showing up.  My community group just recently started back up providing a couple of meals a week.  They didn't ask permission.  They just began serving when our stress level began to rise again.

I have lived too much of my life playing it "relationally safe."  Am I invited?  Do they want me?  I would love to surprise them with a coffee/treat/gift, but what if it's the wrong kind?  What if they think it's lame?  Fear and insecurity hold me back.  That's so embarrassing.  I desire to serve others with freedom.

Serve.  The key word through this all is "Serve."  Ryan and Rissa didn't come and dominate our lives and our time for the evening with their agenda.  They graciously kept saying that they can give us a quick hug or they can hang out all night.  They didn't want to intrude.  When Jen came to the hospital, she did all the "lame" stuff.  She shlepped our bags from ICU to the Stroke Ward.  She ran errands.  My friend Lindsey has taken our kids on several occasions.  Talk about a labor love.  So often, I want to show up and get involved how I want to.  I want to help out in the ways that are easy and fun and convenient.  However, the beauty is found when we come and serve where the need is.  When we show up to fill in the gaps.  Whatever those may be.  My Mother-in-Law has been the most beautiful expression of this. She comes and babysits for doctors appointments and everything in between.  She doesn't look for the most glamorous role.  She looks for the most needed one.

I gotta be honest.  This post is more for me than it is for you.  I just have been so struck by the selflessness of people.  I've been so struck by the sacrificial giving.  I've been so struck by the gift of people serving us.  Still.

This is a Call to myself.  To remember.  To identify.  And to act.
To not second guess.  To not be insecure.  But just to love.  And love extravagantly.
And in the words of my friend Michelle, to Just Show Up.

Thursday, April 10, 2014

Our Day at USC.....

Hello Friends and Prayer Partners.

I am SO sorry for the late night update.  We have been processing...

We met with Dr. Giannatta at USC today.  Dr. Giannatta is a world renowned neurosurgeon and we were thrilled be seen by him.  He is quite strong and opinionated and "confident" ;) .... and rightly so.  He's supposed to be "the best."

Anyway, THANK YOU for praying.  It was an honor to get his expertise and opinion on everything.

Here is what he thinks:

His opinion is that we can wait a bit on doing Radiation.  He said the tumor is not pushing on the brain yet, so it's not at the dangerous size yet or causing damage.  Since we are hoping Jon's facial nerve will restore, he thinks it's best not to do Radiation there, while we give it time to heal.  (the tumor is wrapped around his facial nerve)  He said even if the tumor grows a bit more, that's OK for now.  If it reaches a size where it's pushing on the brain again, then we'll start Radiation or do a 2nd surgery.  It's a very conservative approach, which we appreciate.  It's of course also a little scary and confusing though, when our first neurosurgeon believes Jon should start radiation immediately.  Don't you wish science was more black and white?  :)

He also recommended Jon cancel his May 8th eye surgery. (The one where Jon was going to have his eye stitched partly closed)  He recommended going to this world renowned specialist in LA who can do a different and better surgery.  Of course this surgeon isn't covered by our insurance, but as Dr. Giannatta said to us in our appointment, "You screwed yourselves over when you signed up for an HMO, so here we are.  You're paying cash to see me.  And you'll pay cash to see him."  (Did I mention he's quite strong, opinionated and "confident"?) ;)

We were able to ask a ton of questions and get his insights on a lot of different things.  We are so grateful for that.
We end our day today feeling thankful, tired, and maybe a tad confused.

We have decided our next course of action will be to seek another 2nd (and hopefully last) opinion.  Since each doctor had such a different course of action, the weight of just choosing one and 'hoping' it is the right one is just too great.  We had been encouraged to get 2 or 3 opinions before taking action and we feel like that is the wise thing to do.

We also feel really good about canceling the May 8th surgery.  Jon's eye has been a huge source of pain and I feel like we shouldn't settle for anything but the best when it comes to that issue.  I think we will call the Dr he recommended for a consult.

Please continue to pray for us as we seek out more counsel.
Thank you for walking each portion of this journey alongside us.  Each leg of this journey has been so tiring, yet you all have not wavered in your passion to pray, serve, and love us.  Thank you so very much.

And now, after an emotionally draining day, I can literally hear my pillow calling me.  ;)
Goodnight, dear friends.  

Monday, April 7, 2014

4000 Strangers Sang For Me...

The craziest thing happened this week.  Our church was hosting a huge leadership conference called Catalyst and I got to 'escape' from Life for a few hours and sneak into the conference.  I was so excited to go and refuel.  To recharge.  I walked in and immediately felt the electricity that happens when 4000 people cram into a room that seats 3500.  The conference had already started when I walked in.  The band was already playing and and I was thrilled to engage in one of my most favorite parts of the conference:  Worship.  Worshiping God at this conference is always an epic experience.  There is something beautiful about worshiping with 4000 other people who passionately love Jesus too.  With all that is going on in life right now, I had been looking forward to this moment.  And so I got to my seat, threw down my purse and jumped to my feet.  I started clapping my hands and singing along to the words on the screen.  The song declared that God saves.  I was in.  I was grateful for God's saving grace in my life.  The second song began.  It was upbeat too.  I was singing along.  Except all of a sudden the words on the screen said something like, "It's my joy to trust you."  Or maybe it was, "It's my joy to choose your will."  I had never heard the song before.  All I know is I was singing along, and all of a sudden I was stopped in my tracks.  I couldn't sing any more.  I physically could not.  My body just froze.  I stared at the words on the screen.  Then I stared at the 4000 people around me.  They were raising their hands, singing these words in an attitude of celebration.  They were clapping and almost dancing.  I know what they were feeling.  I know what they were doing.  Some were declaring it out of an overflowing of their hearts.  Others were claiming it as truth for their lives, even if they are in a tough life situation.  Both are beautiful expressions of worship.  I couldn't do either.  But the 4000 people?  They sang for me. They sang on my behalf. They didn't know it.  But they were my voice.  I sat down and wrote in my notebook: They sing for me.

When Jon and I went to lunch after that session, he said to a friend of ours, "Worship was a unique experience for me today.  I sang the words I could.  And when I couldn't sing, they sang for me."

Unbelievable.  Amazing that we had the exact same words for the exact same experience without even talking about it.

Friends, there are so many beautiful things about being in Community.  This week, I experienced a new one.  Are you able to sing?  Sing for those who cannot.  Are you able to celebrate?  Celebrate for those who just cannot muster up the strength.  Are able to pray bold prayers?  Pray for those who don't have the courage to pray it right now.

The next day, worship began again.  "God, remind me you are good," was one song lyric.  I couldn't sing the words.  But I wanted to.  Oh how I wanted to.  I need to be reminded of that right now.  I held out my hands in a posture of asking.  I wanted to sing.  I prayed those words in my heart.  But I couldn't utter them.  However, those around me did.  They sang for me.  They asked for me.

The song changed.  This was a song about Jesus sacrifice for us.  I sang.  I worshiped.  I was overwhelmed with gratitude.

The song changed again.  This song was about how worthy God is of our worship.  Bam.  I'm in.  He is worthy and I declare it with confidence!

Then the song changed a 3rd time.  "Take me deeper than my feet could ever wander..."  This song is a favorite of mine.  A bold prayer asking God to increase our faith and trust in Him.  To take us to places we wouldn't think we would survive.  Places we could not survive alone.  But to places where we are totally dependent upon Him and where He does immeasurably more than we could ever ask or imagine.

I remember the last time I sang this song.  I was leading worship up at Hume Lake and Jon was supposed to be playing guitar in the band, but instead he was vomiting in our room with a severe headache.  A headache that would lead us to the hospital Emergency Room and put him into surgery to remove a brain tumor.

I looked around this room of 4000 people, raising their hands singing, "Spirit lead me where my trust is without borders.... Let me go wherever you would call me... Take me deeper..."  These people were singing these words - this bold prayer - like it was exciting.  Something to celebrate.  They wanted it.  They were singing this prayer and meaning it.  It rolled off their tongues so easily.  It's how I've sung it too.  I've been in deep waters with Jesus.  I've had my faith increased.  And God shows up and does the miraculous.  He shows up and blesses and provides and sustains.  And so I courageously sing the songs and pray the prayers again.  "Take me deeper!  Make my faith stronger!"  But this time?  Today?  All I wanted to do was run onto the stage and grab the mic and say, "Do you know what you're singing?  Do you know what you're praying?  You should sing this with your heart pounding and with your hands shaking."  I wasn't mad.  I just realized how beautiful this song sounded to me 6 months and 4 days ago.  And how beautiful it sounded to this room of 4000 people.  And now, after having God answer that prayer and taking me to a deeper level of faith and trust, I realize that this time around it's not just beautiful.  It's a beautiful mess.  It's scary.  And uncertain.  And it stretches you beyond yourself.  It is something we can have confidence will be for our good and will refine us.  But refining is painful.  And hard.  So I just stood there.  And listened.  And the people sang.  They sang for me.  They were courageous.  And excited.  And I stood there and cried.  I let the words wash over me.  I let the Truth penetrate my spirit.  

Friends, if you are feeling like you are so deep in the pit, that God's grace cannot find you, know that He is present and His grace knows no end.  And I will sing for you.

If you know how good God is and you trust Him with a reckless abandon, please sing for me.  And for Jon.

I remember my parents telling me that when I went into surgery at age 5, they sat in the waiting room in silence.  They said they had prayed with people in hospitals for years and years, but when it was their own child being rolled away, they could not even pray.  They had lumps in their throats and couldn't utter a word.  I remember hearing this story when I was younger and thinking, "Really?  You couldn't even pray for me?  I just don't get it."  I now realize the immaturity in my questioning.  Sometimes being so dependent on God is paralyzing.  Sometimes being dependent on Him doesn't pair correctly with clapping and dancing.  Sometimes being dependent on Him feels more like you're hanging off a cliff... hanging on by your fingertips.  You know He's there.  You know He has you.  But it feels dangerous.  And requires courage you can't muster up on your own.  So you rely on The Body.  You rely on the Holy Spirit.  There is beauty found in spiritual Community.

Thank you for praying for us.
Thank you for singing for us.
Thank you for allowing us to experience another piece of Community.
There will be a time when we will be on the other side of this.
And we will pray for you.
We will sing for you.

And when that day comes, may the faith of each and every one of us be stronger than it is today.  

Thursday, April 3, 2014

I'm So Confused...

Well it turns out brain tumors aren't as glamorous as they sound.  Oh wait, you didn't think they sounded glamorous in the first place?  Ok.  Brain tumors aren't as easy to deal with as they sound.  Hmm..  You didn't think they sounded easy to begin with?  Gotcha.

I'm a 'glass half full' type of person.  I hear "brain tumor" and I think "wow, that's horrible but we'll get through it!"  I hear "Jon needs Cyber Knife Radiation" and I think, "Ok, I trust that's the best thing for him and it will work out."

I believe the best.
I hope for the best.

However, I'm finding that some things just aren't that easy.  (Duh. I know.)  The day after we were told Jon was being signed up for Cyber Knife Radiation, I got a call from a friend saying her relative was the person who would be doing Jon's actual procedure.  (like, she already had Jon's name etc..)  What are the chances??  Then I get an email from someone who had the same tumor Jon has.  And this person really recommends not doing the Cyber Knife, but to do the Gamma Knife.  THEN I get an email from an old family friend who had the same tumor as Jon and strongly recommends not doing the Cyber Knife or the Gamma Knife.  He did extensive research nationwide and insists the best way to go is to use the method called "Fractionated Stereotactic Radio Surgery."

Each one says they're better than the other. Each one claims to be most successful.  The least invasive.
The most precise.

All this to say, WHAT IN THE HECK DO I DO!!??!?  I say "I" because Jon is just not in a state to do research, gather info, etc...  That's my job as the caretaker and his partner.  So I'm researching and praying and researching and praying.  And then I present info to him... then go back to researching and praying.  Would you join us??  I know.  I'm going to get a million and one opinions now.  (Yes, we've been encouraged by everyone and their mom to try this vitamin and that oil and this supplement and that therapy and.. and.. and... )  Would you join us in the PRAYER part?  Would you pray for CLEAR direction?  The deeper I get into this, the more I realize what weight is in these decisions.  I mean, there is a TUMOR growing at a rapid rate in my husband's brain.  That is just plain crazy.  And Radiation is no pretty walk in the park.  It effects stuff.  Lots of stuff.  For potentially lots of years.  And Jon has lots of years left.  So we don't want to regret a decision, 20 years down the road.  We don't want to kill healthy brain cells.  We don't want to cause more damage.  Yet we must kill the tumor.

Each method is "the best."  Each method promises good things.  Each method also has a reason why the other methods aren't as good.  Shocker.

Bottom line:
Pray for wisdom. Discernment.
We are desperate.