Tuesday, October 29, 2013

10 Highlights from the Hospital

4 weeks ago tonight, at almost this exact time on October 1, Jon and I went to the ER thinking he'd get some heavy duty headache meds and we'd be home in a few hours.  Little did we know that we wouldn't be going home that night.  Or the 14 nights that followed it.

As I reflect back on our time in the hospital, I realize that I never got to share some of my favorite memories of our time in the hospital.  Sounds funny to say I had "favorite memories" during our 2 week stay after my husband's brain tumor surgery, huh?  But like I've said before, God has a funny way of overshadowing the negative with incredible positives.  Amazing how He does that.

When my friend Emmy came up with this whole blog idea, little did I know this would become a a type of therapy for me.  A safe place to process.  A place to share some of our most honest conversations, thoughts, and fears.  It gave me a chance to share our story in real time, so that you all could be praying in real time.  What an incredible blessing.  So in addition to being able to do that, I want to share some of my favorite memories/moments in the hospital that I never posted, because there were other things to share - prayer requests, Jon's healing, etc...  In an attempt to not forget those moments, and to let you enjoy those moments too, I'm going to list some of them tonight.  :)  I'll start with 2 stories that have the "Jon Ramsay is my hero" theme.  Then I'll list a few fun things.  ;)

1) One of my absolute most favorite moments of our entire hospital stay was about 4 days after Jon's surgery.  We were on the PCSU floor (Progressive Care Stroke Unit) at the time.  At the hospital, there are chaplains and "spiritual care" people that walk from room to room, checking in on patients and offering spiritual support.  They talk to you, encourage you, etc...  We had many stop in to visit Jon and he loved meeting them.  I told you on an earlier post how drawn they all were to Jon... one wanted to be Facebook friends and follow his journey... it was really neat.  Anyway, I will never forget, I had just gotten dressed one morning and this older lady walked in the room.  She introduced herself as with the "spiritual care" department.  I shook her hand and then Jon shook her hand and I excused myself into the bathroom to put on some mascara.  :)  I knew he'd love chatting with her and I could use a minute to put on some make up.  I was in there for about 5 minutes and when I opened the door to come back into the room, the woman was kneeling by Jon's bed, weeping.  Jon had his hand on her head and he was praying over her.  I had no idea what had transpired in just 5 minutes of conversation, but I know my husband.  And he has a gift of seeing inside of a person.  Seeing their story.  The deeper story behind the story their face tells.  He was loving her.  Praying over her.  Her.  The woman that had just walked in the door to minister to HIM.  When he finished praying, she thanked him and wiped away her tears, apologizing for how the tables had turned.  She said this had never happened before.  Jon said he was honored.  She thanked him and left.  That moment will forever be etched in my mind.  What a beautiful picture of the broken loving the broken.

2) Another one of the most incredible moments was while Jon was in his 11 hour surgery.  I was in the waiting room with friends and family - lots of familiar faces - when all of a sudden a man I didn't know walked up to me.  He asked if I was Jon's wife.  I told him I was and he hugged me.  He told me his name and then told me he had met Jon at Hidden House coffee shop in San Juan.  He said he was sitting at a table and Jon overheard him mention something about his story to someone else.  Jon walked over when he was done, introduced himself, and said, "Can I join you?  I would love to know your story.  I would love to hear about your wife."  The man said he told Jon he would love to talk and so Jon sat with him and for the next hour, the man told Jon about the fairy tale marriage he had for 45 years...and how his wife had passed away just 6 months earlier and the pain and loss he was experiencing.  This man stood in the hospital waiting room and told me he had never had a stranger just walk up to him and engage him like that.  He was so blown away.  He told me he had heard about Jon's surgery from a mutual friend and he just had to be there.  He hugged me and then left.  That moment was such a gift to me, in that long stretch of waiting.  What an amazing man Jon Ramsay is.  If I'm honest, I would never do that.  Never.  I have too many insecurities.  I would be too worried that the other person would think I was crazy.  But Jon is confident in who God has made him to be.  And he is confident in the reality that people want to know and be known.  They want to love and be loved.  So offering to know and love someone, even a stranger, is just natural to Jon.  It just feels right.  I love that about him.

3) One fun memory, was when Jon decided 3 days after surgery, that he really wished he could have some guys over to his room to watch Sunday football.  He couldn't open his eyes for too long.  Couldn't stay awake for much longer.  I laughed.  He dropped a hint to some friends.  And Sunday afternoon, his life group guys showed up to his ICU room.  :)  They brought lunch, baked goods from their wives, their "lucky jerseys"... it was such a gift for these guys to come "watch" the game with Jon.  It just gave him the breath of fresh air he couldn't actually get by going outside.  It gave him a taste of 'normal.'  So thankful for good friends....

Jon had lots of special friends visit... Our pastor Jeff Pries was the first one to show up, followed by Jon's dear friend Cole Beshore... Denny Bellesi... Stan Endicott... And these guys didn't just come once. They came again and again....  Here's a favorite pic of Stan and Jon - Yes, Jon has a "flower" in his mouth while Stan serenaded him.  ;)

4) The night before surgery, our life group girls came to the hospital with a huge gift basket from my community group girls.  This was when they gifted Jon with the infamous Superman jammies.  These ladies are dear to me.  We laughed together, prayed together... It was beautiful.

5) We had some amazing staff that cared for Jon.  From the head charge nurse to the head of the rehab unit to hospital board members... Jon was being checked on by every angle and level of staff.  The Mariners community is broad and beautiful and very well connected.  We were blessed to be so well taken care of by friends, friends of friends, and strangers.  In ICU, we had the same nurse for 3 nights in a row and absolutely fell in love with her. We had some great conversations about life and God... And even after we were discharged to a different floor, she came to visit Jon on her day off!  And she brought him fun, thoughtful gifts - complete with straws with "umbrellas" on them to celebrate how well he was doing drinking with a straw.  We love you, Tory!!!  (This pic was on Jon's final day in ICU.  But here's the cool thing: Tory represents a bunch of the fabulous nurses we fell in love with - MANY of which we are Facebook friends with now!  Love you ALL!)

Here's a pic of us celebrating daddy's recovery with the umbrella straws... :)

6) Another highlight was taking this pic:

LOL!  This "selfie" was taken by me right after I saw Jon for the first time after surgery.  I got to walk alongside his bed, holding his hand, as he was wheeled from post-op to ICU.  They had to make one stop along the way - to get an MRI of his brain right after.  So I took this pic while I waited for 5 minutes outside the MRI room.  I was so thrilled my husband was alive!!!

7)  2 of my dearest friends from out of town came immediately when we found out.  Jen drove up from San Diego and Yvonne drove down from Fresno.  All they did was serve.  And pray.  Serve and pray. I didn't think I "needed" them.  I couldn't have been more wrong.  I could not have made it through those first 24 hours without these 2.  "Every good and perfect gift is from above."  These 2 are good and perfect gifts.

8) Jon's room was epic because Love was taped up everywhere.  Thank YOU!!!

9) This was the last pic of Jon before surgery.  I love it.  This side of his face doesn't look like this anymore.  It's the old Jon.   Someday Jon may look like this again, Lord willing.  But I can tell you this, the "old Jon" is long gone.  This experience has forever left its mark on his life.  And it is good.

10) Many people gathered to do a Prayer Walk at 6:40am while Jon was going into surgery.  They prayed. And sang.  And people filled the main hospital waiting room all day long.  For 11 hours.  People came and went.  They prayed.  And kept me company.  Chick-fil-A donated an amazing breakfast for everyone there.  Subway donated an awesome spread for lunch.  Friends brought Rita's Italian Ice, boxes of Starbucks coffee, and lots of diet coke.  ;)  In true Jon fashion, Jon was bummed he was going to miss seeing everyone at the Prayer Walk.  He wanted to be there.  He wanted to thank everyone for coming and praying and supporting.  So he made a video.  Yes, you read that right.  Literally minutes before Jon was wheeled away to surgery (like, after he had said goodbye to everyone except me), he held up his phone and recorded a short video just to say "hi" and "thanks."  He handed me his phone and said, "Please take this to the waiting room and play this for them.  I am so grateful for them."  Wow.  He never ceases to amaze me.  While fears of death, side effects, complications, the unknown future, etc.. are all swirling in his mind, he pushes it all aside to be thankful.  To express his gratitude.  He also made one for our kids.  That one was a bit more emotional...  But what a gift.

For those who may not have seen this but were there, or for those who prayed from their homes, this was his message to you...

Friends, these 10 things are some of my favorite memories from the hospital.  They are precious keepsakes.  I have learned so much through these past 28 days.  One, is where to put my focus.  Honestly?  I could have easily written a blog titled "10 horrible things from the hospital" and included things like Jon's nausea, the broken chair I slept on, bla bla bla..etc..etc..etc..  Isn't that so true of life?  Perspective.  How we look at things.  Where we choose to put our focus.  Jon and I want to be people who choose to see the good.  Whose eyes are focused on the positive.  The negative is too easy.  That's a slow pitch.  Anyone can see that.  But to have eyes to see the blessings?  The good?  What a gift!  May we always have eyes to see God's abundant blessings.  Because the reality is, they are there!  Oh God, help us not to miss even one!

Sunday, October 27, 2013

Will You Still Love Me if I Show You Who I Really Am?

So last night, Jon and I attended a friend's Halloween Costume Party.  It wasn't just any party.  It was an over-the-top, feels like you're at Disneyland, type of party.  SO stinking fun.  Jon and I had RSVPed over a month ago, so even though he was just a few weeks post-op, he still wanted to go - if only for at  least a little bit.  

When we were in the hospital, Jon began brainstorming costume ideas.  He started out thinking a pirate would be the perfect fit - since he talks out of the side of his mouth like a pirate.  :)  Plus, an eye patch would be a great help to his already sore eye.  However, the more he thought about it, he decided the best match for him right now would be to dress as the Phantom of the Opera and have me dress as Christine.  :)  This was extra fun for us because we love that show, and have sung "All I Ask of You" at weddings at at concerts where we perform love songs.  We love it so much that we may or may not have watched the 25th Anniversary Special on Netflix in the hours prior to the party, just to get into character.  ;) 
What a perfect costume for my hubby with facial paralysis!  

Throughout the night, and even as we posted the pics on Facebook afterward, many people responded with, "Jon, you are such a good sport!  You have such a great outlook."  And you know what?  They are right!  Jon is such a gamer.  But it doesn't come without pain or sacrifice.  Jon and I have joined a private Facebook Group for those who have had a tumor similar to Jon's.  And we have received emails and messages from people who have had similar experiences.  What I have found is that it is very common for someone who has facial paralysis to go into "hiding."  To put their social life on hold.  To keep things very private.  We even watched a video made by the actor who played The Hulk on the movie "The Avengers."  He had a tumor similar to Jon's about 10 years ago, and he told his story and his journey.  He confessed that he didn't tell anyone other than his wife and a few close family members for awhile.  (several months)  He was concerned about the "stigma" that came with facial paralysis and/or possible outcomes after brain surgery.  
Let's be honest.  When someone has a face that looks "different," sometimes you wonder if their brain is "different."  By the grace of God, Jon has the exact same personality and intelligence as before his surgery.  But we all know our culture judges a book by its cover.  At least to begin with.  And when our "cover" is altered and has abnormalities, it really plays into our insecurities.  If we're honest, we all agree that Jon looks amazing!  His recovery has been incredible and everyone is so blown away by how great he looks.  We all would also agree that if it was US in that position, we would really have a hard time with it.  It would be a definite struggle.  And so when Jon shows up at Halloween parties or goes to drop our kids off at school with me, or goes on walks in our neighborhood, it's tough.  It's not far from his mind.  But he has chosen to push through the embarrassment, the uncomfortableness, the awkward feelings, etc.. and still live.  He does not want to hide.  

Jon has also decided to not just 'grin and bare it', but to actually laugh and choose joy in the midst of all of this.  That's how he can put on the Phantom mask and just laugh about the appropriateness and the irony.  It is also how he can laugh with our kiddos about his paralysis.  I will never forget the day the kids were coming to the hospital to see Jon for the first time after his operation.  Jon was genuinely nervous. What would they say?  How would they say it?  What would their childlike, unfiltered reaction be?  I took a moment to pull our oldest 2 kids aside before we walked into Jon's hospital room. I told them a little of how daddy was doing and what some of his side effects were.  They really didn't care, they just wanted to see him!  When we walked in, they were precious.  So gracious, so loving.  So gentle.  They hugged him and kissed him.  After we chatted for a few minutes, I asked Taylor, "What do you think?  How do you think daddy is doing?"  And she said, "Well, he's doing good. The only thing that is weird is the big cut on his head.  And his smile is like this."  And then she made a crooked smile.  She wasn't being rude or trying to be funny.  She was just speaking honestly.  Immediately, Jon started laughing.  Then Jackson.  Then Taylor and me.  We all just laughed and Jon said, "You're right, honey.  That is what my smile looks like.  Would you take a picture with me? With our matching smiles?"  
This picture will forever be a treasure to our family:

I remember I grabbed my phone to take the picture, fighting back tears.  Proud tears.  Tears full of love for the strength and grace my husband was displaying.  Taylor knew in that moment she was safe.  It was safe to be honest.  No one would be upset, give her a glare, or tell her to keep her thoughts or questions to herself.  No, this will be a family who embraces honest feelings, loves deeply, and extends grace.  And my husband found safety in that moment too.  Profound safety.  Even after some stares or honest questions.  There was hugging, kissing and even laughter.  Relationship had not been broken.  If anything, it was built deeper. 

I remember sitting that night and talking to Jon about what this would look like - for him to choose to not live in hiding.  He said, "I don't know how this is all going to go down. But I have people who loved me yesterday and I have to believe that they'll love me today."  And with that, the choice was made.  Live out loud.  

I can't help but look at Jon's example and experience and wonder what it would look like if we all embraced that type of authentic living.  We all have friends.  Family.  Neighbors.  People that love us.   We also all have junk.  Brokenness.  Insecurities.  What if we were courageous enough to believe that those who loved us yesterday, will love us today.  And what if we actually found deeper relationships, deeper community, more love - all through our authenticity?  That's what Jon has found.  That's what I have found.  Even on this blog.  More support.  More relationships.  More love.  

Jon's courage does not come easily.  It's a conscious decision.  He wars against insecurities.  But he has found it to be substantially more fulfilling than living in hiding.   Hiding out breeds fear.   Fear is crippling.  Living courageously honest in the world breeds life.  And healing.  And when we love those who are honest, we are healers.  Our roles in this world are profound.  

Friends, let's love and be lovers. Let's find healing and be healers.  
Let's live.  And live courageously.  

Thursday, October 24, 2013

Apparently I Have A Pride Issue...

Throughout this journey, Jon and I have been overwhelmed by the generosity of friends, family and even strangers.  Completely overwhelmed.  People have been generous with their time, recourses, thoughtfulness...  And to be honest, it has been extremely difficult on me.  I basically suck at "the art of receiving."  For as long as I can remember, I've had a hard time with it.  I know I'm not alone.  I would assume almost everyone struggles with being on receiving end of things - whether it is receiving gifts or receiving love.  It's an awkward place to be.  I remember when I was in college, (APU! Woot, Woot!) ;) I would sing a solo with the University Choir and Orchestra and afterward, people would come up to me and say, "Wow, you sounded amazing.  You have such a beautiful voice." And every time, do you know what my response was?  "No." Seriously!  I told them no!!!  I would say it softly with my head down a bit.  And honestly, I didn't respond that way because I thought I sang badly.  I responded that way because I didn't know how to accept a compliment.  I thought I was being gracious.  I truly thought if I said, "Thank you," that would be arrogant.  So instead I just said "No."  It sounds so crazy now, 10+ years later.  I'm so embarrassed that that was my response. But I didn't know how to just say "Thank you."

As time went on, I noticed this problem seeped into other areas of my life as well.   When Jon and I were dating, he would pick me up for a date and say, "Wow, you look great!" and I would reply with, "No.  No I don't."  Again, it was not because I thought I looked ugly.  It was because I honestly didn't know how to accept a compliment.  I remember Jon telling me that after it happened so many times, it became really frustrating.  In an attempt to be "overly humble" I was insulting him.  Ouch.  He even confessed that knowing I would slam down his compliments every time, he became hesitant to express them.  Double ouch!

I know I have matured and grown in this area over the years - at least to the point where *most of the time I can at least respond with "Thank you." ;)   However, I still struggle with people doing kind things and giving me kind gifts.  On my 30th birthday, my dearest friend Jen planned a day filled with surprises.  She drove me all around San Diego where each place we stopped had a gift and a clue to the next location.  And at each location, different friends were there to surprise me and join me on that "leg" of the journey - whether it was a pedicure, coffee, shopping, etc.. And at the final "stop" of the day, all of my girlfriends were there for our final celebration meal. Here's the thing:  Do you know what my response was each time I saw a new friend show up at a location?  "Oh my goodness, I am so sorry!!"  They would look at me, puzzled, and ask why.  I would say, "I feel horrible you had to rearrange your day." or  "Oh man, you probably had to hire a babysitter!" or "It was probably such a long drive for you to get here!"  What I realized was instead of squealing in delight with the sight of each face, I pulled a major SNL "Debbie Downer."  In my attempt to be humble (as I truly was overwhelmed with their presence) I actually stole some of the joy out of the moment.

It's at about this point in my typing that I'm getting super embarrassed for just admitting all of that to you.  It sounds so immature.  So lame.  And honestly?  It is immature and lame.  But I have to assume I'm not alone in this struggle. Accepting people's love/affection/affirmation/gifts/time is hard.  It's humbling.  Hm.  Humbling.  That word implies that pride resides somewhere in the mix.  Ugh.

Fast forward all this to about 3 weeks ago.  Jon and I are going along our merry way.  Life is good.  Busy, but good.  Having 4 kids is kicking our butts, but we're hanging in there.  Then BOOM!  Brain tumor.  ICU.  Brain surgery.  Hospital stay.  Rehabilitation.  Our lives flipped upside down.  I will never forget - I texted my friend Jen in the middle of the night to tell her the news.  She texted right back that she'd be driving up from San Diego first thing in the morning.  I told her no.  I told her there was nothing for her to come and "do."  She ignored me.  She came.  And literally held my hand (and my purse and my diet coke) through the entire process.  I texted my life group girlfriends to let them know.  They texted back, "What do you need?"  My knee-jerk response came out, "Nothing!  We'll be fine."  Clearly.  At 7am, Jessica had a hot breakfast for my kids at my house.  At 7:40am, Nicole picked up the big kids for school.  At 9am, Sara picked up the babies.  Jon was in ICU.  I was by his side.  Whether I liked it or not, I needed help.  Fast forward a few days and as the "needs" were well taken care of, the "extras" began happening.  Jaime organized meals.  Jill showed up with Starbucks almost every single morning.  Heather baked treats.  Then I got a cold.  Tami brought medicine.  Andrea and Katie brought essential oils.  Michelle brought Trader Joes treats.  I can't go on because I could write an entire blog just listing names, but you get the point.  I could list name upon name and how they blessed us. (Did I mention Brian and Yvonne drove down from Fresno??  Or the fact that my sisters and our parents took on juggling 4 kids over the 14 days??  Oh, and the fact that we spent 14 days in the hospital and never once had to eat hospital food!  Can I get an AMEN!??)  ;)

Throughout it all, I have tried to get to the bottom of my issue with being on the "receiving" end.  Every time someone showed up with a card or balloon, and I said, "Thank you" I realized I was so incredibly grateful, but there was also a tiny part of me that felt, well, kind of dumb.  I felt needy.  It was uncomfortable.

Then we started getting phone calls and emails.  Thoughtful people were inquiring about our medical expenses. They asked how much of Jon's salary was covered/not covered by Disability.  They asked about things I did not want to talk about.  So we didn't.  And then several people asked if they could open some type of "account" to go toward expenses we had.  I was horrified.  I was embarrassed they even asked!  And then a dear friend and mentor stopped by to see us.  He asked us some of the "hard" questions and challenged us to think of every possible outcome here - even the worst case scenarios.  I told him about all the people inquiring and offering to open some type of "love on the Ramsays" type thing.  I laughed a little - with a "could you imagine?!?" type of attitude.  He looked at me, and gently said, "Deanna, you preach about community.  You preach about God's provision.  But you have a pride issue.  You can live out what you preach or you can choose your pride.  But you can't have both."  Wow.  Everything in me wanted to say, "But, But!..."  Except I knew he was right.  I knew allowing someone to do something like what he was talking about would be the most humbling experience of my life.  Hm.  Humbling.  A word that implies pride resides somewhere in the mix.  Ugh.  Yup.  Pretty much.  But what will people think?  Wow, pride indeed.

And so earlier today, our good friends Jeff and Jessica (Claire) Norwood posted this.  Jessica has been named one of the Top Wedding Photographers in the World (American Photo Mag) and Top 10 Most Influential Photographers of the Decade (Photo District News).  I mention this, because as much as she loves me and this blog, she just "could not" use any photos I had posted from my iphone on her blog.  LOL!  So at 9pm, she told us she would be meeting us at 5pm the next day to take her own photos of our family.  She's assertive like that, which works for this girl who always just says "no."  ;)

Anyway, the page they posted, the words they wrote, and the accounts they set up are beyond generous.  They are humbling.  And if I'm totally honest, "allowing" them to post this really isn't all about them or you.  It's about me.  Stripping my pride.

So here I am.  "Linking" their page to this blog, as I promised them - and our friend/mentor.  No obligations to you.  Just me stripping off another layer of my pride.  It's a vulnerable space to be in.  But if I can come out of this process a more gracious, humble person?  That's a gift in itself.

Jessica's Blog:

Wednesday, October 23, 2013

Quick Prayer, Please

Just a quick post to ask for some quick prayer. Jon's eye has gotten progressively worse as time has gone on and today the pain level has hit an all time high. We have been referred to a neuro-opthemologist, but it will take a few days for that referral to go through. Please pray for his pain in the meantime. He does ok, and then he hits a "wall" and he can't function. It's heartbreaking. Oh, and while you're at it, pray that neuro-opthemology falls under medical insurance and not optical. Because, well, we've never needed optical so we eliminated it from our plan last year. ;) Thanks friends...

Tuesday, October 22, 2013

Shrek, A Poem, and Mommy's Head in a Hole. (Not to be confused with Daddy's Hole in the Head) Ba dum bum chhh! ;)

While the craziness was happening with daddy, Jackson and Taylor were cast in the musical "Shrek" at Ladera Performing Arts! They had auditioned for the show earlier in the day on Oct. 1st - the day I took Jon to the hospital and he was admitted. From that night on, life became all about daddy, and that has become our temporary new normal. However, today, while I sat watching them at practice, I marveled at their accomplishments and talent. Taylor was cast as Teen Fiona (yes, big solo!) and a Dwarf. :) And Jackson? Jackson was cast as the Donkey. The Donkey!!!! A hilariously funny lead role! Come on!! How cool is that?!? This was my view today:

You know how they found out the "big news" that they had been cast in the show? Over the phone.  When mommy called from daddy's hospital room. SO not ideal. :( 
A few days after Shrek was cast, I got a mass email from Jackson's teacher at school, written to all the parents, saying how great all the kids did on reciting poems in front of the class. She said she gave them a choice - they could either recite a poem as a group (to help them feel comfortable) or they could recite it alone. I read it thinking, what poem?? 
I asked Jackson about it and he said, "Ya, I picked a poem and memorized it." 
"Did you say it in front of the class??" I asked. 
"Yup." He said. 
"Did you do it with a group of kids?" I asked, assuming he did. 
"No, I decided to do it alone." He said, and then proceeded to recite the poem to me.
I was stunned. Proud. And heartbroken. My sweet son had done all this. On his own. I imagined him practicing it. Over and over. We usually did that at home. Together. The family sits on the couch and is the audience. I felt horrible that he had gone through the whole thing, and I didn't even know it was happening. 

This journey has been hard. On everyone. It's been scary. And exhausting. Not just for us adults, but just as much, if not more, for the kids. And they have been troopers. Never complaining, never moping, always understanding. But it doesn't make The Situation go away. Nor does The Situation make time stand still. Nope. Life still happens. Real life to these kids. School projects. Community theater.  And when I've been smart enough and brave enough to pull my head above ground for a moment, I've seen some amazing kids doing some amazing things. I'm astounded by their strength. 
You think God's grace has just covered Jon's physical recovery?  Not even close. God has cared for our kids, protected them, loved them... He has filled in the embarrassingly wide gaps this mom has left. 
As our journey continues, I know we will have more and more "above ground" moments..until we find we are back to fully living in that space. I know that day will come. At least I'm told it will. Until then, I pray for God's continued grace over our kids. His grace IS enough. For them. For me. For Jon. For you. For real. 

Wait, did I mention my son is the Donkey?! The Donkey!!!!!! 

Monday, October 21, 2013

I Don't Want to Brag, But...

So...Jon and I used the handicap placard for the first time! Guess what? It worked! ;) I was so excited and felt so special. There was NO ONE who parked closer than we did! :)  I just had to get a pic of Jon in front of our spot. He looks thrilled, right? Kind of like those "first day of school" pictures you didn't mind until you reached Jr High. Then it was like, "Really mom?? We're doing this?" Jon's such a good sport.  He actually was kind of excited to debut his new and improved walker on here. Our amazing friends Jeff and Jessica took Jon's walker and painted it black for him. It looks great, right? Anyway, I just had to share this pic with you. Because, well, some days you just need to find something to celebrate. And today, front row parking was just the thing. 

What Happens When God Doesn't Answer How You Want?

Last Tuesday, when Jon was released from the hospital, we were both so excited.  We had packed up all our belongings from the past 2 weeks, given "thank you" gifts to our nurses and doctors, hugged each therapist... We were thrilled with Jon's incredible progress and couldn't wait to integrate him back into home life.  We walked with one of his nurses to the doorway and I left them there to wait, while I ran to the car to pull it around and pick him up.  While I was on my way to the car, my phone "dinged" with a message from a friend stating what so many others had stated, and what we had been celebrating all week:  "We are SO grateful for God's incredible blessings on Jon's life!  What an answer to prayer!"  I smiled to myself in a moment of gratitude and worship, fully agreeing with this friend's note.  I hadn't  walked 2 more feet when from out of no where, I heard this voice in my head.  "Really?!?  God's blessings?  His answered prayers?  Have you forgotten your specific 3 prayer requests from day 1? Have you not realized that God has not answered your prayers?"  I literally, out loud replied with, "EW!"  LOL!  Kind of a funny response I know, but that's what I said and that's what I thought.  Ew.  Gross.  Who is this voice trying to steal my joy?  I don't want to give this voice even an inch of space in my brain.  I immediately started thinking through all the amazing things that had happened in Jon's life.  I remembered all the blessings.  It didn't take many seconds to turn my thoughts around.
But over the past several days since the parking lot, I've taken some time to consider that experience.  Choosing to not acknowledging certain parts of our journey doesn't help anyone.  If we turn a blind eye to certain aspects of our story, we lack full understanding of what God is doing, who He is and how He works.  Now, the tone of "that voice" was without a doubt evil.  (Trust me, I "heard" it.  The tone was just mean and kind of like a bully!)  But when I took a moment to not fear those thoughts, but instead to really submit them and talk about them to my Creator God, a lot of healing took place.
Here's the reality: God did not answer our prayers how we asked.  In fact, we had 3 specific prayer requests as we went into surgery.  I even blogged about them on here.  Although there were many, many risks with the surgery, there were 3 major/probable risks we prayed over.   1) Jon might have paralysis on the right side of his face. 2) Jon might lose feeling on that side of his face.  3) Jon might permanently lose hearing in his right ear.  We prayed that those things would not come to fruition.  And guess what?  To date, all 3 of those things have happened.  Jon has facial paralysis, he has lost most feeling in the right side of his face, and he has permanently lost his hearing in his right ear.  But when I paused to face the reality of those things and acknowledge them, something crazy happened.  I still felt calm.  I felt peace.  I felt grateful.  Still.  How can that be?  Friends, the blessings that Jon has experienced and the provisions God has placed on our lives are abundant.  Abundant to the point that when we consider the details of the situation, gratitude is still the emotion that rules our hearts.  We had started a list of the blessings we were experiencing, from Day 1 in the hospital.  God had given us eyes to see His goodness and we didn't want to forget even one thing He did, so we began just jotting them down.  And what's amazing, is that although this story has not gone how we prayed it would go the night before surgery, God has done IMMEASURABLY MORE than we could have even asked or thought to pray for.  Want me to give you just one little example?  Jon can taste!  We didn't know that was a risk, but after surgery, the surgeon told us it was very probable he wouldn't taste.  What a huge blessing that he can!  Huge.  God has answered prayers that we didn't even know to pray for.  He has taken care of details we didn't know were at risk.  We are SO grateful!
When I think back to our 3 specific requests, the reality is that God did indeed answer.   He always answers.  Sometimes He says, "No."  Sometimes He says, "Yes."  And sometimes He says, "Wait."  I remember my parents teaching me that as a young girl.  And here I am as an adult, having to remind myself and re-learn that God always hears His children.  We are praying that God's answers so far are, "Wait" and in the future, will be "Yes."  Only time will tell.  We are praying that Jon's facial paralysis will go away.  We are praying his face will regain full feeling.  We pray that this is the "waiting" period and that healing will come.  And as far as Jon's hearing, we do know that it is permanently gone.  When we look at the grand scheme of things, we realize that is a small price to pay.  But should we grieve that loss?  Of course.  It does alter how we live, obviously.  Big questions like, "How do we now preserve the one working ear he has for the rest of his life?"  Smaller questions like, "How do we position Jon at restaurants so he can always hear the conversations?"  To tiny questions I personally consider like, "Which side of the bed should I lie next to him on?  If I lay on his right side, he can't hear me. So I'll sleep on his left side.  But wait, if I stay laying on his right side, if he rolls toward me to talk, that 'bad side' will face down onto the pillow, so his good side will be able to engage in 'pillow talk' still."  Silly, I know.  But it's just the reality.
So why am I writing about this?  Why am I bringing to your attention that God didn't answer our prayers how we asked?  Because.... get ready.... It's OK.  No wait, it's better than OK.  And God is not just kind of good, but He's been really really extravagantly good.   Even with the loss of something so precious.  Even with the waiting time - as we pray for complete healing.  And I really wanted to post this to help war against the, "Oh, it's easy for you to say how good God is.  Look how great Jon is doing."  Yes, that is true.  But this hasn't all gone how we originally hoped it would go.  You want to know the reality?  It's gone BETTER than how we hoped it would go.  Only God could do that.  Only God could do immeasurably more than we could ask or even imagine to ask.  And so I don't have to fear the questions.  I don't have to fear the answers.  I don't have to fear the voice that tries to distract.  I can face those things head on.  And when I do, my bottom line is still my bottom line:  God has blessed us immeasurably more than we could have asked or even imagined to ask.  God has protected Jon above and beyond from what we could have known was needed.  God has blessed above and beyond what we deserve.  We are grateful.  Not because God acted like a genie that comes to grant us 3 wishes.  But He acted as a caring, personal, intimate God.  One who knows us better than we know ourselves.  One who knows what we need or don't need more than what we can comprehend.  One whose plan is FAR better than our plan could ever be.  That is who our God is.  And THAT is why we are grateful.  Still.

Wednesday, October 16, 2013

First Day Out...We Go Back In

I got to spend this morning with my community group. It was SO good to squeeze each neck and thank them for being, well, them. This group of around 40 girlfriends are all young moms from my community. We do life together. We learn about God together. We laugh together, cry together and have a lot of "Wow, you too? I thought I was the only one." moments. These women are precious gifts to me. Over the past 2 weeks, they have loved our family extravagantly. They have watched our kids, fed us meals, sent their house cleaners over, dropped off Starbucks, ran errands, brought gifts to our kids, decorated the outside of our home for Fall, given gifts, cards, emailed song lyrics, verses of hope, and words of encouragement, cried with us, prayed for us... How do you thank a crew like that??  They have put God and His Church on display in a beautiful way. I am so proud to be "theirs" and have them as "mine." The Wednesday morning Jon was diagnosed, I (obviously) couldn't be there to lead them. Instead, they lead each other in a time of prayer for us and texted this pic to let us know they love us. My favorite part is the Kleenex boxes on the floor. Ok, and the Justin Bieber hearts. ;)
Did I say how much I love them? ;)

After a fabulous morning with those dear friends, I jetted back home to be with Jon. :) His mom is staying with us this week so she was with him, plus a nurse was there too..So he was well taken care of, in case you were judging me for leaving his side. ;) (first time in 2 weeks!) ;)

Anyway, I walk in the door and Jon says, "Babe, we have to go to the hospital. Our friend Christine is having unexpected surgery tonight and I just have to go pray with her. She visited me twice this week - it's my turn!" [never mind the fact that you just had brain surgery, babe!!] ;) So off we went! 
What a sweet time of encouraging each other and praying together. Christine and her family have been a huge blessing to our family. What a privilege to surround her in love and prayers today...

Well, tomorrow morning starts with an 8am in-home physical therapy appointment, so I gotta take this guy to bed:
LOL!! My awesome community group may or may not have given Jon this Superman PJ set the night before his surgery. :)

I love it. 
And I love him.

Goodnight friends. 


7 days ago, my friend Emmy Blakely came up with this amazing idea - she gifted me with this blog - so I could document our journey with Jon's brain tumor. Today, I logged onto the blog "stats" page and found that over the past week, there have been 93,134 hits. NINETY.THREE.THOUSAND. Know why that's so significant?? That's A LOT of prayer support!!! Prayer changes things, folks. We will be forever grateful for your love, support and prayers over the past days and will covet them in the coming days as well. Your prayers matter. I mean, God couldn't have Jon's name far from his mind this past week, even if he tried! (I'm joking...but seriously!!) THANK YOU for that!!!! What an invaluable gift....

Tuesday, October 15, 2013

Homecoming Day!

This morning I saw a hunky hitch-hiker standing outside of the hospital.

 I couldn't resist myself. I pulled over and just had to pick him up!
What a sweet ride home together... Reminiscing about our drive TO the hospital 14 days earlier. Little did we know we wouldn't be coming home that night... It has been a whirlwind of an October so far! But pulling into our driveway was a sweet milestone. 

Need I say more??

There is nothing better than pulling into home with this as your welcome! Daddy is home! Our pumpkin patch was in full bloom, balloons had been delivered from different people, a huge card was written on by all our neighbors... It was a homecoming we will never forget! 

Of course Jon had his priorities in place in what he wanted to do now that he was out of jail. First stop? The pharmacy to fill his "drugs." ;) You'd think Jon would want me to run and grab those. Nope! He wanted to go in to see and talk to our pharmacist because, quite frankly, we love our pharmacist! :) 
I teased Jon about where he chose to sit down - at the blood pressure machine. He has had his vitals checked every hour (or so) for 2 weeks. I asked him if we should check them one last time. He wasn't amused. ;) 

Next item on his "to do" list? Pick the kids up from school! Yes, you read that right. My hubby is crazy. Specifically, crazy about his kids. ;) He has felt so bad that he's been gone for so long, he wanted to be right there when they got out of school. Only Jon... :)

After all that excitement, a nap was in order. Well, not before loving on these 2...

Jon is supposed to be on a 90 minute cycle of activity (therapy or walk), snack, sleep. It's funny, at one point today I told Taylor, "Daddy has been napping, so he'll now be ready for some good awake time!" I had to laugh because it sounded like I was talking about one of the babies!  I'm juggling yet another nap schedule in our home. Hilarious! :)

I didn't end up taking any more photos because, well, I was just soaking it all in. But trust me, today was good. Very good. And now we head to our own bed! Cannot wait! 

As I was writing this and reminiscing on being back together as a family, I went to retrieve a pic to post on here, and I discovered these gems that Jackson apparently put on my phone this afternoon. LOL!

Just a sweet reminder of how good it is to be back home. :)

Monday, October 14, 2013

Rehab: Day 6: Our Final Full Day

Today was our final full day in rehab. Another day of the same. Therapists. Jon excelling. Me falling in love with him more and more. These days have been precious.
Here's a glimpse.... 

Stretching has become a new component of Jon's rehab. During the 11 hour surgery, Jon developed pressure sores - swelling and blisters all down the left side of his body. It has been very painful for Jon and he is just now finally getting to the place of being able to stretch that side. (As if he didn't have enough pain and healing to do at the surgery site/his head! Poor guy...)  

Jon also has built up his strength and stamina on this thing! Oh, and his "Year of Adventure" shirt is a perfect addition to his "t-shirt blog" line up, don't you think? :) 

This fun band will be coming home with us. Oh wait, he mastered this one. ;) The grey one (hardest one) is what he was graduated to. (Can you tell I delight in bragging on him??) ;)

Next came a visit from the babies... Even though therapy wipes daddy out, as long as Morgan can sit in his arms, she's content. (Ok, and an iPhone doesn't hurt either) ;) 

This one, however, wants Jon awake and playing with her! :) 

One bummer thing was that Jon got a severe headache tonight. So severe, that no meds could ease the pain. So off he went to another CT Scan... :( (you can tell I was more worried than he was) ;) 
Praise God, the CT Scan came back clear! Yay!!! Now to figure out how to help his pain... Praying for good rest tonight for him.

But before I could tuck him in, the nurse had one last thing she needed to do...take the staples out!!!! 
Jon was so brave and the nurse even collected the staples (19 total!) in a container for Jon to take home as his prize! ;) 

I said it earlier and after re-capping, I still agree: It was another precious day. 

Friends, God has been with us every step of our journey and as we head to bed for the 14th night in a row here, I can't help but be grateful. Grateful for God's provisions, His protection, His Church, His people, His goodness, His faithfulness, His peace. We are so undeserving and yet He gives and loves lavishly. What a privilege to have had the past 2 weeks to truly taste and see God's goodness. 

Only a gracious God would allow us to experience the goodness of Himself and have that be our lasting impression of our time here. Right?? It doesn't make sense and yet it just is. 

I don't know where you are or what you're experiencing, but I do know without any doubt... that God loves you. And He holds your [insert biggest fear/struggle/pain] in the palm of His hand. And as you surrender your life to Him, He will do for you what He's done for Jon and me. Peace beyond your understanding. Joy in the midst of pain. Goodness in suffering. It seems so far fetched, so impossible, I know. Yet it's something you or I don't have to be able to understand or wrap our minds around. We just have to believe. Surrender. And receive. 

I pray you go to bed tonight knowing that God has you. He has us. And being His is the best place to be.
Goodnight, friends. Sleep in peace. 

Sunday, October 13, 2013

Rehab: Day 5: Date Night Edition!

Something amazing happened today! Jon was given a 4 hour "get out of jail free" card..otherwise known as a 4 hour trial run outside of the hospital! Our insurance approved coverage for one week in the Acute Rehab Unit and our week is almost up! So Jon will hopefully be coming home Tuesday! (Insert happy dance!!!)  :)

Anyway, tonight we were allowed to leave the hospital for 4 hours. We were so stinking excited!!! 

In Occupational Therapy, we had practiced Jon getting in and out of the car, so he was ready to rock tonight! It felt SO good to have him by my side...

We had a dear friend who made a special dinner reservation for us at Nick's in San Juan...where we were treated to an amazing feast. So blessed...

Come on, these pics put butterflies in my tummy. He is so stinkin handsome!!

After dinner, we drove to Calvary Santa Ana to see our amazing friend Jason Gray. Jason is on tour with Laura Story (author of Indescribable, Blessings, etc..) and Steven Curtis Chapman. 

Although Jon couldn't stay (or handle the sound/lights) for a concert, we were able to see Jason perform and spend some time together as well. 

Only a friend like Jason can bare a matching pirate smile like Jon's, just to make us laugh. And we can laugh, because of who Jason is.... (see below) 

Jason has a beautiful story - he stutters when he speaks, but never when he sings. Jason is incredibly talented and God has used that talent, paired up with Jason's physical weakness, to bring God's hope and love to the world. Could there be a better message/example for Jon to see right now?? And after Jason sang, Laura Story sang - who wrote the song "Blessings." (one of my favorites..I actually sang it to Jon in his hospital bed this morning!) Laura wrote Blessings after her husband was diagnosed with a brain tumor and had surgery!! Um, hello!?! And then Steven Curtis Chapman sang, and he lost his daughter in a tragic accident a few years ago. I just found out his theme song after her death? "Live Out Loud." (The title of this blog, if you missed that) ;) Ok, seriously?!? God planted us with these people tonight. Were all of these things coincidences? Not a chance. Common theme? Brokenness. What does the world say about brokenness? You will never recover. You will never heal. You can't be used. What does God say about brokenness? You can be used to His glory. You can be restored to better than before. In your weakness, He is strong. 

These truths/people/stories were a gift to Jon tonight. He soaked them in. He hid them in his heart. He put them in his back pocket for a rainy day. They are promises. Of hope. Of redemption. 

I loved our 4 hours away. It gave me a glimpse of our new normal. There was his walker. And his scar. We moved slowly. People stared. Kids looked wide eyed. It won't always be that way. Jon's growing stronger every day. But my husband was confident. He was kind. He excused the stares. He told me I looked nice. We kissed. We spoke of God's goodness. We prayed. We were encouraged by a friend's faith journey. We were reminded of the faithfulness of God. 
Tonight was good.
May we have many more just like it. 

Rehab: Day 4 (written on Day 5! Oops!) :)

I ended up writing a blog last night on Living Honest, and forgot to give a little recap of Jon's rehabilitation! So sorry!

But I wanted to still share because there was lots to celebrate!!

(Oh, and today's t-shirt says "The greatest of these is Love" for those keeping track at home. I swear, these shirts WILL have their own blog someday...) ;) 

First, Jon walked without a walker! He has to be held by his therapist on his safety belt, and she did catch him a few times, but he did it!!! SO proud!
PS - this pic is him practicing his "arm swing." We all have a stride when we walk and our arms move naturally. Jon is re-learning his. So amazing. 

Then he got to do an exercise where he bent down to touch cones. The Dr does not want him bending down at all (have to keep the head upright), but this really showed his strength and balance improving. 

He also got to "play catch" with a ball - you can see here he did some of it balancing on one foot! Although the therapist encouraged him to start slow, he did it "Hot Potato" style - as fast as he could. ;) Par for the course with this guy..

One bummer thing, is Jon's license has been revoked. Of course we understand, and he clearly wouldn't attempt driving right now... But he'll have to go through many steps to get it back. (Which we know he will do in no time at all!) Today he took some preliminary tests to show where he's at with all of that. This will be used as a baseline to show his progress in the coming weeks & months. 

And me? Well I got to wear this necklace that a stranger bought for me after reading this blog. Strangers who love strangers astound me. My favorite part is the elephant charm - which reminds me of my post 'Elephant in the Room' - and to to Live Out Loud. 
God has been so faithful. He is so good.  He is gracious and kind. We see His healing hand on Jon every day. 
We are grateful. 

Saturday, October 12, 2013

Living Honest

So Jon often says these profound things in passing conversations - and sometimes I'm smart enough to jot them down afterward.  Here's one from a few days ago that I thought you might benefit from:

Living honest.  For some people, they think that means, “Let me tell you what I think.” That’s not what it is.  Living honest is, “I’m gonna show you who I am.”  
- Jon Ramsay, 3 days after brain surgery.  The moment he chose to "Live Out Loud" and be "OK" with posting pictures and thoughts about his journey.  

Over the past 11 days, Jon and I have had some amazing conversations about life, God, faith, trust, surrender, fear...  When I say that Jon is doing incredible, it is not because he haphazardly just says, "It's OK."  He has wrestled through tough realities.  He has processed through his fears and insecurities. He has verbalized that parts of this are embarrassing.  He has asked the hard questions. He has also had moments of feeling brave and courageous.  But when all is said and done, his bottom line is : I want to live honestly.  When Jon said what I quoted above, it was 3 days after his surgery.  He was laying in his hospital bed and he just began talking.  It was so profound that I grabbed my laptop and just began typing.  I didn't ask questions.  We didn't dialogue.  He just talked.  And I wrote.  I want to share all that he said throughout different blogs in the future.  Because there were so many different themes.  So many nuggets of wisdom.  Such Truth.

I have received many encouraging emails and comments about our decision to 'Live Out Loud' through this process.  Please know that Jon and I do it intentionally and purposefully.  It is not without pain and without sacrifice.  Yet we believe it yields the greatest reward.  And the more we share, the more it becomes habit.  Today's honesty comes way easier than last Tuesday's honesty.  Jon recently said, "We live life behind a curtain.  Facebook (and social media) is really only made for us to open up one side of the curtain and leave the other side closed.  The awesome vacations.  The beautiful kids.  The successful parts.  Yet we have pain and junk too.  We have failures.   The reality is, we all live on BOTH sides of the curtain, yet only want to let people in on the one side.  I think to actually live in community and to live honestly, it means we have to open up both sides.  And if I believe that, then I have to lead in that and live that out.  Even now."  And so he gave you, whoever you are reading this, entrance into his journey.  The stories.  The struggles.  The pictures.  

Living honestly means showing people who you are.  Today.  In the midst of your circumstances.  The reality is, sharing after-the-fact is so much easier, right?  We get to say, "This is what God did.  Look what happened!" And the story can have a pretty bow on top.  It's much more uncomfortable and potentially embarrassing to share a story with no bow.  But having honesty in your story now, when it's not done yet, will allow real community to take place.  It lets others in on what they truly can relate to:  Real life.  What I've learned, is that people want to mourn with you, celebrate with you, pray with you, stand in the gap for you.  And it frees others up to be honest with their journey.  And allows you to stand in the gap for them.  

Our first day here on the 1st floor in the Acute Rehab Unit, one nurse asked where Jon would like to eat.  He responded, "Well I'm supposed to eat in the Dining Room, right?"  The nurse said yes, but then said, "A lot of people don't like to go in public looking like, well, how they look here.  So they opt out of the dining room and eat meals in their room."  My heart sank.  This Dining Room technically is a public place, but it is reserved only for the Acute Rehab patients and their families.  And there are people who still don't feel "safe."  As we walked to dinner, I thought of the men and women, sitting behind their closed doors, too afraid to come out and join others.  If all they have been shown their whole life was the beautiful side of others, then I can imagine how devastating their brokenness must feel right now.  They must feel so lonely.  Not good enough.  A burden.  An embarrassment.  Oh how my heart breaks for these people.  Friends, let us not be people who perpetuate this type of thinking.  By living honest lives, inviting people to peek behind both sides of the curtain, we give others (and ourselves) permission to just be.  

Now of course life isn't all brain tumors and face paralysis.  It's soccer game victories, grandparent's 90th birthday parties and job promotions.  It's everything.  The good, the bad, and the real.  

I realize this blog is not about me telling anyone what to do.  It's not my place.  However, if there is one thing I have learned, it is that true community is beautiful.  And it's something I hope for everyone to experience.  But to get to that place, you may just have to pull back the curtain a little bit.  On both sides.  And in the words of my beautifully broken husband, "Don't just tell people what you think.  Show them who you are."

*To clarify... a sweet friend asked if I meant this honesty had to be done on Facebook.  I am sorry if I communicated that.  (and due to lack of time and energy, I'm not going to go back and re-write.  ;)  But to clarify, living honestly does not mean you have to show everything specifically on Facebook.  That was just the current "tricky one" for us because it is so public.  And we felt this tension because it is so counter to what Facebook is typically used for.   But finding people to live honestly with (face to face, over email, phone, wherever that person is) is really what I hope for us all.  We live in Orange County and are surrounded by men and women who don't let anyone "in."  The emphasis on "having it all together" is so strong.  And yet we all know that no one truly has it all together.  But it takes 1 person to say, "Hey, I have this going on." And a million other people go, "Wow, I thought I was the only one."  When we live honestly, we realize we are not alone. 

Friday, October 11, 2013

Pillow Talk

Jon and I were laying in his bed this morning, squeezing some cuddle time in before he was barraged by physical, occupational and speech therapists.  He whispered to me, "What are some descriptives of how you are doing?"  I said, "I am content.  I am filled with hope.  I am grateful."  He paused briefly and then said, "Are you scared?"  "Nope."  I said without hesitation.  "Me either." He said.  And we hugged and kissed.  

This is God at work.

Rehab: Day 3

I realize these posts are probably getting boring to most people.  How many different angles can one post of their experience in rehab?  I'm not sure, but I'm finding out!  :)  Regardless, thank you for letting me post them anyway.  To us, these pictures are victories.  They are hard work.  They are images of the grace of God.

Here's a glimpse of today:

*Today's shirt is brought to you by Transformers.  A friend gave it as a gift.  Jon loves it. 
 God is transforming him - inside and out.  Cheesy.  But it's true.  :)

Jon's eye is very sensitive to light and to air, so sometimes he needs to wear shades even indoors.  
Yup, he's one of "those" guys.  ;)

Jon went up and down a flight of stairs!  TWICE!  
(Why twice? Well, because the therapist asked Jon to do them once.)   ;)  

We're now cuddling in his hospital bed.  We keep his room pretty dark, thus the grainy pic.  
But still wanted to capture the best part of our day.  ;)