Friday, January 31, 2014

I Spy...

I've been playing a lot of "I Spy" recently.  No, not with my kids.  With God.  I know God is faithful.  I know He gives good gifts.  But right now our life is in a holding pattern.  We're at a stand still.  Jon's recovery is, well, stuck.  He has gone above and beyond to strengthen and heal what is in his control.  And he's been very successful at that.  His strength and determination and hard work has been remarkable.  What's left are the things out of his control.   We won't know where his facial nerve "lands" for a few more months.  We're waiting for insurance to approve the next steps.  He deals with daily eye pain that will hopefully resolve over time on its own or through surgery.  But right now, everything just is.  It is what it is.

Have you ever been in a doctor's waiting room for a really long time?  Let's be honest.  It sucks.  You get bored.  Then you get antsy.  Then you start counting the number of tiles on the ceiling.  All you have is what's in front of you.  The outdated magazines.  The pamphlets that tell you what you should or should not be doing.  The lame background music.  The window that shows another brick building next door.  Your mind is consumed with what will happen after your name is finally called.  The shot.  The drilling.  The diagnosis.  The opinions.  The answers.  The excitement of a prenatal ultrasound.  The dread of the root canal.  The results of the biopsy.  There is excitement.  And fear.  There is insecurity in the unknown.

Jon and I have been sitting in the waiting room for awhile now.  We've read all the magazines.  And the pamphlets.  We are doing exactly what they say.  We have studied every picture on the wall.  Sometimes we luck out and a song comes on that we love.  So we dance.  Then other times a different type of song plays.  And we cry.  We are hopeful.  We are expectant.  And we war against fear.  However, if we're not careful, we can let the room get very narrow.   Stale.  Small.  The sound of the second hand ticking from the clock on the wall gets loud.  Very loud.  So we have decided to start playing a game.  A game of "I Spy."  Searching for the goodness of God.  Searching for the blessings. Because they are there.  We just have to have eyes to see them.  They are there in the friends who stop by and sit with us in the waiting room.  The ones who drop off coffee.  The ones who pick up our kids for a play date.  The blessings are in the music.  Music stirs our soul.  Even the songs that make us cry.  The blessings are in the window.  Because if you walk closer to the window, you can see past that brick building next door.  You can see the blue sky peaking in the corner.  And birds flying.  Life.  And a rainbow, displaying promises of God's goodness.

Here's what we know:  We know that God doesn't waste our time.  And His waiting room does not exist as a torture chamber that we get to "grin and bare it" until our name is called.  On the contrary, He works all things together for good to those who love Him.  There is good that will come out of our time in the waiting room.  There is much to be learned here.  It is a place where He shapes us.  And develops us.   It's where we learn to live with our hands held open.  It's a place to rest.  To exhale.   It's also not void of blessings.  Nor is it void of God Himself.  He is here with us.  His goodness is on us.  We have just found we have to intentionally look for them.  We have to have our eyes wide open and focused.  Because if we wanted to count ceiling tiles all day, every day, we could.  But I think God has more for us than ceiling tiles.  He has more for us than ticking clocks.  And some day I will sit and write all that we learned from the waiting room.  But for now, I'm just content with playing a game.  A child's game.  A game that trains the young eye to not just see the big things right in front of them.  But trains the eye to seek out the interesting.  The colors.

I Spy with my little eye....
Will you play with me?

Tuesday, January 28, 2014

Praying for a Miracle This Week...

Jon posted this on Facebook yesterday.
Would you join us in praying for a miracle this week?

Hello friends, I have a prayer request...
Today marks the beginning of a big week for me. One week from today, after 4 months of recovery, I will be starting back at work on a part-time basis. My hope and prayer from back in October was that I would be fully recovered/healed before I went back to work. But as of today that just isn't the case. I still continue to have pain in my right eye and have facial paralysis on the right side of my face. I also am permanently deaf in my right ear. I'm so grateful for the excellent care I've received over the past months from my healthcare professionals, many of whom are now new and lifelong friends. They have taken me so far down the road of healing...But I believe in a big and powerful God and so over the next week I'll be spending time in prayer and fasting for a full and complete healing. You all have been such a huge and incredible blessing over these past months. I will never be able to adequately express my gratitude to you for your prayers, encouragement and generosity as you've followed along so closely with my journey thru Deanna's blog. You have changed my life! So, if I could be so bold, would you please join me in prayer for a miracle this week? For the specific items I mentioned above? Even for the hearing loss that is "permanent." I know God is able. I'm sure there are many people and situations in your life that need prayer as well and I commit to pray for all of you over this next week who like or comment here. I am more aware today of the truth that we are in this life together for a reason and I would count it a priveledge to come before our Creator in prayer for you as you do for me. Lets just see what He can and will do in a week as we surrender our cares to Him. Praying for the miraculous...
Shalom.
Ramz

Monday, January 13, 2014

Hope Wins...


Hope wins.

(Excuse the misspelled name. It was a (very awesome) gift!) 

Sunday, January 12, 2014

An Update on Jon...

It's been a little while since I've posted a medical update on here.
It's all very hard to communicate.  But I'm going to do my best to get you up to speed on 5 things that have happened... (I'll start with a re-cap of the past few weeks and then fill you in on our latest Dr appointment..)

1) Jon "graduated" from his therapies!  (physical, occupation and speech)  Congratulations to our handsome grad!  We are proud of all the hard work you put in, Jon!!!  :)

2) As previously stated in other posts, we've had quite a few referrals get denied by our insurance company.  Most of the specialists our neurosurgeon wants Jon to see are at UCI and our insurance co won't approve it.  One of those was a neuro-opthemologist - who could perform the surgery on Jon's eye.  (putting a gold weight on his eyelid so he can close it)  Our insurance co said they have a Dr in our network that we can see instead of going to UCI.  So we went and saw him.  Well, the Dr appt was pretty horrible.  Our time there can be summed up with sharing one of the gems that happened: His cell rang.  He had Jon in the chair, fitting him for the gold weight.  He answered his phone(!) and we said, "Hey man.  What's up?  Ya, I'm still stuck here. I got 2 more patients and I should be able to jet outta here in about 45 minutes.  Ya, I know.  Ok, well let's meet for drinks.  Ya Elephant Bar at 7:30 sounds good.  Drinks are long overdue."  I mean, come on.  This was after he told us he doesn't get paid enough to do this procedure. And before he reminded us that he's the only one in our network that does this type of procedure, so we have to use him.  We went home feeling uneasy about moving forward.  But we didn't have a choice.  Jon needs the surgery.  Then Jon went and researched this Dr online and found that he has horrible reviews.  Yes, bad bedside manner like we experienced, but also bad work that resulted in patients having further eye damage!  We decided to call off the surgery.

3) Jon's eye began to feel better.  From around Dec. 27-January 6, Jon's eye felt really good.  We knew canceling the surgery was a good choice.  We decided maybe we could just wait until we know for sure whether his facial paralysis would restore or not, before doing any surgeries.  (we were only having this surgery done early, because of the pain.  But w/o the pain, there was no need to have surgery early!)

4) January 6, Jon's eye pain returned.  :(  I called our insurance company to appeal their denial of the specialist at UCI.  They are currently reviewing our complaint and request.  Would you please pray with us that they would approve our request and re-consider sending us to a better specialist?

5) January 9, Jon had an appointment with a new neurologist.  This was supposed to be a HUGE appointment for Jon.  This Dr was supposed to perform a very special test (EMG) on Jon to determine if there is any life left in his facial nerve.  We were nervous to know this information, but were hopeful for good news.  This Dr is the President of the Department of Neurology for the State of California. We were thrilled to be in good hands.  However, the appointment did not go as expected.  He refused to do the test on Jon.  He said although Jon's ENT requested this test be done, the reality is the test is very rare. (to be done on a facial nerve)  And it is very painful.  He said he in no way would feel comfortable and confident doing this test.  He asked Jon about some of the therapies he had done for the past few months.  He then asked if he had seen any facial movement at all during any of it.  (especially in the e-stim therapy, where they shock his face) Jon told him he never had any movement.  The Dr then said the most gut-wrenching, devastating words:  "Because you've had no response to any therapies this far, it indicates to me that your facial nerve is dead.  It indicates there is no life left in the nerve."  He then went on to say that Jon needs the "best of the best" care.  He said Jon needs to see an academic that specializes in brain tumor post-operative care.  He said he will fight to make that happen.  He said he will settle for nothing less than the Chair of the Dept of Neurosurgery at USC.  (Dr. Steven Gianatta...anyone know him??)  ;)   He said the other place that would be good, would be to go to the House Clinic in LA.  But he said that would most likely be cash out of pocket.  He said USC is the best and he will fight our insurance company with us to get Jon the best.  (He kept saying the words "fight" and "best."  I wanted to do a standing ovation!)  He said all of the regular community doctors and specialists are great for 90% of what most people need. But he said what Jon needs now, is a higher level of care.  Specialized.  Academic.  It's Jon's face.  His face.  "You don't want to settle," he said.

The door had barely closed behind us as we walked out of his office, and Jon and I were both very emotional.  But surprisingly for different reasons.  I was emotional because I felt like Jon FINALLY had an advocate.  Jon finally had someone who was saying they would fight for him.  Fight for the best care for him.  They realized how important this was.  Jon however, was in tears for a different reason.  He was devastated.  Sad.  Mad.  Frustrated.  The words, "This indicates to me that your facial nerve is dead," was on repeat in his head.  We went to lunch afterward to talk and process.  There were more tears.  "What if he's right?  I just don't know how I can do this for the rest of my life." He said while pointing to his face.  My heart broke.  I mean, shattered.  "But babe," I said.  "He's gonna fight for you!  We are going to get you the best care!" Jon looked at me, unimpressed.  "When you take your car to the auto shop, you want them to look at the problem and say, 'Oh this is easy to fix.  You can get the part at any ol auto supply shop down the road.'  You do not want them to say, 'This is actually a really big deal.  And you need a really special part.  I have to ship your car to Germany to get it fixed.'  You just want it to be an easy fix."  My heart broke for him again.  The reality is, on October 1st, we wanted Jon's headache to just be a headache.  But it wasn't.  It was a brain tumor.  We are already in Germany.  We have been for 3 months.  It took one second to get there, and now the trip back home is a long one, with lots of stops and detours.

*Would you pray with us that the doctor's "indicator" was inaccurate?  Would you pray that Jon does have life in his nerve?  The nerve can restore up until 6 months, and sometimes (although rarely) can restore up to a year post-op.  We are about 3 1/2 months in.  There is still hope!
*Would you pray that Jon does get approval to see the neuro-opthemologist at UCI?  That we would find favor in the eyes of those reviewing our appeal?
*Would you pray that we would get approved to be seen at USC?
*Would you pray for Jon's heart?  That fear and worry would not have room to settle in his heart?
*Would you pray for me as I love and encourage Jon?

Thank you.  This is a roller coaster of a journey.  Thank you for bearing with us on this ride; covering us with your love and prayers.  We are grateful for you.

Tuesday, January 7, 2014

Today, I Cancelled My Baby's 1st B-Day Party...

My 4th child, Reese, turned 1 this week.  And Saturday is her 1st birthday party.  Well, it was going to be her 1st birthday party.  That is, until I canceled it.  Yes, today, I called off my last baby's 1st birthday party.

Here is what I emailed our guests:


RE: Reese's Winter ONEderland has been Cancelled!  

I know.  You're thinking, "Did I read that subject line correctly??"
Yes. Yes you did.
A week ago, an adventurous Ramsay family felt like throwing a 1st b-day party for 75 of our closest friend's for our baby's 1st birthday was a good idea.  Heck, with the holidays, this birthday kinda snuck up on us.  But with a little over a week to plan, we thought, "Why not?  Let's do this!"
Well, somewhere between borrowing chafing dishes, creating snowman crafts, borrowing folding tables, collecting folding chairs, making favors... somewhere in the midst of all of that, we came face to face with reality.  We are in a tough season.  We are stretched very thin.  Our kids are getting a sliver of what they deserve from us.  Party planning was probably not the wisest addition to our life right now.  So today we realized we had a choice: Our pride vs. our sanity.  Guess what?  We are kicking our pride to the curb.  A week ago, we were feeling quite ambitious.  Today, we are feeling tired and stressed and exhausted.  
So.  Can we all just agree to tell Reese some day that her 1st birthday party was a blast? But we just forgot to take pics?  ;)  
Honestly, as much as I (Deanna) feel like the biggest loser of a mom and wife and person right now for canceling this, I am reading through this guest list of names and I feel SO blessed that I know each of you.  I know you are a safe place for us to be real.  I know you will give us grace.  I love each of you for that.  
SO sorry for this cancelation.  
Thank you for your understanding.
We love you........


So, you know, that happened today.  
I freaking called off her party.  
I felt guilty and giddy all at once.  
So guilty.  So lame.  So incompetent.  I felt embarrassed and less-than.  
But once I pulled the trigger, I felt so much more free.  Like a weight had been lifted.  I felt peace and relief.  And almost giddy.  Giddy that I had the courage to take something by the cajones and show it who's boss. 

Hmmm.  Boss.  Who the heck is the boss anyway?  So often, I feel like a slave to my calendar.  A slave to my schedule.   A slave to life in general.  It's exhausting and overwhelming.  Today, I took a hard look at what's what.

I'm racing around trying to find thematic paper goods and decorations. I'm piecing together crafts.  As a "non crafter," I cannot stand Pinterest.  And yet, even I got sucked into the abyss that Pinterest is, where I realized how lame my current party plans were.  Because if I didn't have actual, real snow delivered to my yard, then my daughter's Winter ONEderland theme wouldn't be complete.  Oh, and that clever title I came up with?  Nope.  Pinterest informed me that was already a Thing.  Apparently, mom's all over the country have Winter ONEderland's all the time.  And they do it awesomer and fabulouser than me too.  Of course they do.  

Regardless of how uncool or unelaborate my plans were, a party is a party.  A party takes time and energy and emotional space and mental space.  Most of which I have a very little of these days.  And what amount I do have left, is not top notch quality, if you know what I mean.  ;)  And so today, I put a stop to it all.  My kids need what little I have left to give them.  And somehow, putting what little I have left into "Melted Snowman" labels for 75 water bottles just didn't seem right.  I couldn't justify it.  (But come ON.  That's a freaking cute idea, right?) 

So tonight, instead of cutting 35 orange pipe cleaners to use in a snowman craft, I took my 7 year old for a bang trim.  I came home and read the Bible to my 2 year old from her new Children's Storybook Bible.  I went over the entire Act 2 script of "Shrek the Musical" with my 9 year old - who has a lead role in the show in just 4 weeks.  I sat and played kissy face on the floor with my 1 year old.  I sent my hubby to bed at 6:45 because his eye pain randomly returned with a vengeance.  I was present.  I had enough.  It was barely enough.  But it was enough.  I'm sitting, writing.  I paid some bills.  I sent a few emails.  Tonight was good.

Now I am NOT implying that a birthday party is not worth my time.  I'm not implying we all should do away with them.  Heck, I've thrown some fabulously fun parties in my 9 years of being a mom to my 4 kiddos.  But I had to acknowledge the season we are currently in.  Acknowledge the capacity I currently have or don't have.   And swallow my pride.  

I've heard it said, "If satan can't make you sin, he'll make you busy."  Now that clearly isn't a verse in the Bible, but the underlying theme is so good. And so true.  Perhaps one of the greatest distractions and detriments in life is our own selves.  Our own schedules.  The thing that holds us back from being all that God designed and created for us to be, much of the time, is us.  Because somewhere along the road, we defined "busy" as "successful."  The busier we are, the more important we are.  The more things we're involved with, the greater we feel about ourselves.  On the surface, that is.  Because the busiest people I know, never feel great about the things they deem most important to them on paper.  They never feel great about the amount of date nights they get with their spouse.  Or the amount of play time they experience with their kids.  They never feel great about how much they are home to cook or how they tend to their house.  They never feel great about how much time they spend in the Bible and in prayer.  I know this, because I'm usually one of the busy ones.  And I know a lot of busy people.  From PTA moms to businessmen.  It's an unfortunate reality, but the more busy we are, the more things important to us tend to suffer.  No one likes to talk about it.  No one likes to admit it.  We like to appear like the plates are all spinning perfectly and effortlessly.  And yet no one can do it all.  We all need margin in our lives.  Space.  Time.  

What is it for you?  I have to assume I'm not the only one.  Where in your life do you need to cut back?  Trim?  Create margin?  What can go? I never would have thought my last baby's 1st birthday party would be in the category of "things that can go." But it was.  Sometimes things that are good in one season are not good in another.  Some things are not inherently bad.  They are just bad for now.  And just because something might be good and right for one person, does not make it good and right for everyone.  We all need to evaluate and come to our own conclusions.  No one knows you better than you.  No one knows your kids better than you.  No one knows your marriage better than you.  No one is going to force you to slow down.  No, on the contrary... this world will ask you for more.  Ask for more of your time. More of your attention.  The pressure to join the race is fierce.  You are the one with your foot on the pedals.  Do you need to hit the brakes?   Jon and I had a little mishap with those pedals.  We pushed the wrong one.  We had been cruising along.  My hip felt better.  Jon's eye was feeling better.  Our kids were home on Christmas Break.  We began to breathe.  And instead of resting in the goodness of those things, we saw that as a green light to add more.  Instead of allowing the good to fill our tanks, we saw it as an opportunity to use those newly deposited drops on something else.  Giving away what little we had just been given.  How embarrassing.  How immature.    

Since it's only January 6th, I feel like we're still close enough to the New Year to have a do-over.  2014 can be different.  It will be different.  Today, we hit the re-do button and it was big and embarrassing and smart and empowering.  Awesome.  I want to be the best expression of Deanna Ramsay as possible.  Mom, wife, daughter, friend...   Hitting that button just felt like a step in the right direction.

Oh, except now I need to go return all this:


LOL!!

I figure it's a small price to pay for the best birthday gift I can give my sweet Reese: Me.

Tuesday, December 31, 2013

BEST. GIFT. EVER. Might Still Be Sitting Unopened...

It was Christmas Eve Eve (yes, that's a thing) and I had run into Walmart (don't ask) really quick to grab a last minute bag of candy I needed for the mini-claw candy machine I had bought the kids for Christmas.  (I always love giving the kids one frivolous, random gift that I would typically say, "No way" to when we're at the store together.  Last year it was a gum ball machine.  This year it was the claw machine.  Next year, I plan to get them that cotton candy machine.  Shhhh....)  Anyway, I was walking down an isle and I heard a young boy's voice talking.  His voice was shaking and emotional.  I turned the corner to see this boy, about 8 years old, standing with his mom while talking on a cell phone.  His face looked pained and nervous.  I was concerned - almost wondering if something traumatic had happened.  He stood and said into the phone, "Ya, I did that.  And I really tried my best, too.  I really am good.  I think I am, at least."  His mom grabbed the phone out of his hand and said, "He is SO worried about being on the 'Naughty List.' He didn't sleep last night and it's consumed him all day."  She glanced at him and said, "I'm sure you'll be fine.  You've been trying hard."  And off they went.

I stood there in the isle with a pit in my stomach.  My heart broke for this boy.  He was SO worried.  SO fearful.  SO insecure.


And the reality of the situation hit me like a ton of bricks: This is as far from the real message of Christmas that we can get.


Now let me tell you, we engage in all expressions of Christmas in our home.  We have several nativity scenes in our house.  We read the Christmas story from the Bible before we open even one gift.  We serve others and give generously.  We talk continuously about the Reason for the Season.  (yup, cheesy slogans and all)  ;)  We also have a Christmas tree and hang stockings by the fireplace.  We visit Santa in the mall and he even makes a guest appearance on Christmas Day at my parent's house.




Even the adults play along! :) 



So me writing on this topic does not come from an "anti-Santa" point of view.  Santa is something we do for "fun" in our home.  But I will be honest.  The boy at Walmart about made me want to call the whole thing off.

The story of the historical St. Nicholas is a beautiful one, but if we're honest, most kids simply know about Santa Claus.  The one in the red suit who is round and jolly, who comes down your chimney and leaves gifts if you have been a good boy/girl, and coal if you've been a bad boy/girl.  "You better not... (insert anything bad).... He's gonna find out who's naughty or nice.... He knows if you've been bad or good, so be good...."  The message most kids know of Santa is this: If you're good, you'll get rewarded.  If not, you get nothing.  And to make it super clear, we are going to put Big Brother in your house for an entire month in the form of a cute little Elf, who will report back to Santa daily what you did or did not do right.  


Whether we like it or not, that little boy in Walmart had valid emotions.  Worry, fear and insecurity make sense if that's the world you live in.  It just depends how deep we want to dive in, right?  Most parents I know use Santa and The Elf as a mild incentive booster for improved behavior, nothing more.  I get it.  But perhaps now that the stockings have been filled with care, and children are sighing with relief, the other Christmas story can find it's way deeper into our hearts for the next 364 days.  The other story brings with it peace, hope and love.  Something the boy at Walmart, and the rest of the world, myself included, so desperately needs.  


Just give me me one minute to explain.


God came to this earth He created in the most humble, vulnerable state of being: as an infant child.  He lived life just like you and I live life and experienced what we experience.  He desires to know us and for us to know Him.  He lived His life as an example to us.  He was loving and a grace giver.  He was generous and kind.  When 'religious people' said to get revenge, He said to turn the other cheek.  When 'religious people' said to exclude people who were "sinful" in their eyes, He said all were included.  (He wasn't a fan of 'religious people.'  He wanted more for the world than just "religion.")  And to show His deep love for us, He then died on a cross, sacrificing Himself, so we could all have forgiveness of our sins.  'Sin' basically means we mess up.  We all mess up - no one is perfect.  God knows that. That's why He came. Back then, an animal had to be sacrificed for the people to have their "track record clean." That was the cost of forgiveness. [Anyone else thankful that we don't have to do that anymore??]  Jesus (God) sacrificed himself and paid the price for our sin.  ALL of our sin. And what's amazing is that He did this over 2000 years ago. He died for our sin before we even did it. 


The Bible says in Romans 5:8 "For God demonstrates His own love for us in this: While we were still sinners, Christ died for us."  You want to know the most crazy, absurd, profound word in that verse?  WHILE.  WHILE we were still sinners, Christ died for us.  You know what it doesn't say?  'When you got your act together, Christ died for you.'  Or 'When you were good enough, Christ died for you.'  Nope.  It says "WHILE you were still a sinner, Christ died for you."  There's no naughty or nice list.  The playing field is even.  We ALL mess up.  We ALL sin.  I mean, I guess technically we all deserve coal, right?   And yet before we changed our ways...  Before we said we were sorry...  Before we cleaned up our messes... Before we were "good for goodness sake"... He died for us.   He offered to wipe the slate clean.  There is no list of things to we need to do to earn grace.  We don't have to be "good enough" for God to love us.  We just have to say "yes" to His offer of grace and unconditional love and then live our lives in that grace in love.  Come on!!!!  How amazing is that!??! 

If your view of God has been similar to your view of Santa, I can understand why you'd want little to do with Him in your daily life.  If you have thought of God as some Big Brother, record keeper, I pray you have gotten just a glimpse of who The Bible says He is.  And who I have found Him to be.  My hope for us all is that we would discover - either for the first time ever, or re-discover and be reminded - that God, Emmanuel, is with us.  Still.  That He came near to have relationship with us.  To know and be known.  Even now.  Even in our sin.  And messiness.  And to hold on to the hope that our sin and messiness doesn't need to define us.  Or own us.  A fresh start is ours.  A new life.  The slate can be wiped clean starting now.

So here we are on the last day of 2013.  You've looked in your stocking.  You've opened the gifts.  And yet the reality is that you may still have a wrapped present sitting unopened under your tree.  A gift from God Himself.  A gift of grace and love and hope and peace.  This gift was what got Jon and I through a brain tumor, brain surgery, and recovery these past 3 months of life.  This gift has literally carried us, surrounded us, sustained us.  This gift brought peace to my life when all I felt was despair after our miscarriage.  This gift has brought hope to my life through the promise of heaven, when all I felt was pain from my mother's terminal illness.  This gift has allowed me to experience grace for my failures and also extend grace to those around me.  This gift is good.  And it's yours.  It doesn't force itself on you.  It will sit, waiting for you your whole life, if you let it.  But what good is a gift left sitting unopened?  Perhaps on this last day of 2013, it's time to open this gift.  And then let 2014 be the year you explore it and experience the greatness of it.  

Believe and receive.  
It's that simple.


I hope you had a Merry Christmas. 
And I pray you have a Blessed, Peace-filled, Grace-filled New Year. 

Saturday, December 21, 2013

Be NOW Who You Want to be THEN....

Jon and I are currently spending the final days before Christmas in Palm Springs with our little family.  The shopping is done.  The gifts are wrapped.  It about killed us, but we did it.  And the payoff has been so worth it.  We still have 2 days left here, but so far, this trip has been just what the doctor ordered.  We also invited my parents to join us out here for a couple of the days.  My mom has FTD (Frontal Temporal Degeneration/Dementia)... and my dad cares for her and loves her in a way that makes even the most elaborate fairy tale look like child's play.  Being a care taker for a loved one is exhausting, and Jon and I couldn't come out here without inviting another weary warrior to retreat from the heaviness of life with us.  It has been a joy to retreat together.

For those that aren't familiar with FTD, I must tell you.  It is a devastating disease.  It is a very rare form of dementia - that tends to hit at a younger age - between ages 40-70.  My mom has the behavioral variant FTD which changes your personality, impacts your executive functions, reasoning, sequencing, speech, etc....  My mom has lost about 95% of her speech and much of the time resembles a child.  A very sweet, tender, loving child.  (SO grateful that is her demeanor.)

For those who don't know my mom, she is AMAZING.  My mom is an author, speaker, professional pianist, talk radio show host, teaches around the country on marriage, parenting, organization, keeping the sizzle in your marriage (yes, she taught on sex!)...  She is a Type A, go getter, larger-than-life personality, energetic, passionate, leader.  She loves her family - loves being a mom to us 3 girls and taught us to celebrate everything.  EVERYTHING.  She invented "Happy Nothing Day"just because she wanted more FUN and LIFE in our home, even if there wasn't something 'official' to celebrate.  The past few years, she and my dad held "cousin sleepovers" on the first Friday of every month, where they would take ALL 11 grandkids for an overnight sleepover, just so that us parents could have an overnight getaway each and every month.  I could go on and on and on, but I just wanted you to have a glimpse of who she is.  Who she was.
Is.
Was.
I never know how to refer to her in these instances.  It is who she IS.  On the inside.  But outwardly, she is now simply a child.  She "was" able to be and do all of that.  To say it is heartbreaking or devastating to have experienced this shift from "is" to "was" would be an understatement.  But I'm sure you can imagine....

So why am I telling you all of this?  Why does this matter, except just to fill you in on that part of my life?

Because this.



























This is my mom.  Every single morning.  She sits in her chair.  And she reads her Bible.  She reads a Psalm.  And a Proverb.  And then she prays.  She has a prayer list that she goes through.  She prays for her husband.  She prays for her daughters.  She prays for her son-in-laws.  She prays for her grandkids.  She prays for her neighbors.  She prays for her friends that don't know Jesus.  She prays about specific things for specific people.  She spends time reading God's word.  And then she talks to God.  Every. Single. Day.

Almost a year ago, Jon and I had our 4th child - and although my mom was low-functioning, I knew how badly she wanted to be a part of helping me "post c-section," as she had done with my first 3 kids.  So my dad drove her up to our house and she stayed with us for a couple of days so she could "help."  I will never forget the first morning she was with us, I walked downstairs and I saw her sitting at my kitchen table.  No, I actually heard her voice before I saw her.  "God, I thank you for Paul and how he loves me and takes care of me.  Lord, I thank you for Paulie and the job you have given him to provide for the Bernard family.  God, I thank you for Melanie and how you have gifted her as a worship leader..."  She methodically went through each person - with either a praise or a request.  I remember walking into the next room and standing just far enough so that she couldn't see me, but just close enough so I could hear her words.  I was blown away and brought to tears.  Not because she was reading the Bible and praying, but because in her new "state" she was doing it.. still.  I mean, I had seen her do this routine my whole life, but today...  Wow, that's it:  I had seen her do this my whole life.  That was the key.

I don't know about you, but I have huge intentions.  I have big hopes and dreams for how I will be and who I will be in this or that situation.  But what I am learning - through my mom, through my dad, and now through Jon - is that when tragedy strikes....when illness hits.... when what you have is lost... THAT is a tough time to start a new routine.  In fact, when all else is lost, sometimes all that you have left is what you've built, up to that point.  Meaning, there is no way that my mom, in her childlike state, could possibly decide to start reading her Bible and praying daily today.  Her brain just wouldn't be able to initiate such a routine.  However, because she has built up a value for those things beforehand, her habits are a natural expression of who she is, even now.

Then there is my dad.  My dad can best be described in 2 words: Servant Leader.  These 2 words have been true of him my entire life and I'm confident anyone who knows him would agree.  Since my mom's illness, my dad has just continued to be exactly who he always was.  He is selfless.  He serves.  He leads us.  He loves.  He adores my mom.  And he continues to love her, as if she was the wife he has always known.  Last Christmas?  A diamond necklace with 3 diamonds, representing us 3 daughters.  Something he knew she had wanted.  Whether she is fully "there" or not, he gave it still.  Valentines Day?  Long stemmed red roses and a love letter.  Seriously.  He most recently had me come over to their house so I could teach him how to put my mom's make up on her.  He had me tell him what make up to buy, where to get it, and how to apply it.  He then went to my mom's hairdresser and had her teach him how to dry my mom's hair with a round brush, since he knows that's how she likes to do it.  He knows having her hair and make-up look nice is a value of my mom's, even if she can't express it now.  So he serves her daily, by getting up 45 minutes earlier to get her ready...  Again, I could go on and on with stories and examples of how beautiful my dad's love is. But the bottom line is, my dad didn't just conjure this up when my mom got ill.  He didn't go from selfish to selfless one day when he "had to" or "should."  No, he has lived a selfless life, and so these habits are a natural expression of who he is.  It's awe-inspiring to watch.

Then there is Jon.  My dear husband who courageously gets out of bed every morning and leaves the comfort and safety of our home - with a paralyzed face.  He lets me post pictures of him on Facebook, starting just days after his brain surgery, and he lets our church put his face on huge screens in the services a they share his story.  He is now officially diagnosed as permanently deaf in his right ear, which as a worship pastor, leaves him vulnerable.  He has many challenges and unknowns in his future.  And yet even as I type this, he interrupts me to share with me a new Truth He learned while he was studying the Bible today.  And then the other Truths he meditated on while he ran 3 miles this afternoon.  Jon's roots are so firmly planted in Truth, even though fear and insecurity attempts to sway him, he remains grounded.  Friends, he did not decide to plant roots the day of his first MRI.  No, in the MRI, he meditated on scripture that he has had hidden deep in his heart for years.
Jon has led our family through this journey.  Through his excruciating journey, he has led us.  I have had the privilege of being a voice for it on here, but he has led it.

My mom, my dad and Jon have all inspired me.  They have challenged me.  They have humbled me.  In my life, I have had huge intentions.  Big hopes for who I will be in this and that situation.  But I want to start now.  I need to start now.  I want the depth - not the short cuts.   I want the track record.  I want the habits and the routine.  I want the passion and the love.

When tragedy strikes, illness arrives, loss is experienced, Life happens... OF COURSE we can choose to start.  Choose to Be.  Choose to love and love passionately.  Choose to serve.  Of course.  And by the grace of God, His mercies are new every single morning.  His faithfulness knows no end.  So it is never, NEVER too late.  Hope is ours.  Always.

However, I just don't want to wait any more.  I know it's often times possible to wait.  Heck, in many areas of my life I have waited and still wait.  And probably sometimes it's easier in the short run to wait.  But this race called Life is long.  It's hard.  It pulls us and stretches us in ways we cannot predict or imagine.  And we never know the time or the place or the details.  But it does come.  And when it comes, I want to ooze the good stuff.   You know, that place inside of each of us.  That place that holds things no one knows exists until you experience something so severe, it rips every layer off of yourself and exposes your core.  And at your core is all that matters.  That is where I want to invest.  That is where I want the good stuff.  That is where I want to build into and develop and grow and nurture.

Are you in a sweet spot in life?  Build into your core.  Are you in the 11th hour?  Start now.

I am in a season of life where I have been given a front row seat to some of the most beautiful cores in the world.  Without trying, and without their consent, my mom, my dad, and Jon were exposed.  And what has been exposed has been profound.
Now, when you have a front row seat, and you are holding the hand of someone's core, your core will be exposed too.  Mine has.  And God has graciously given me peace.  And comfort.  And strength.  And hope.  But I've also taken a hard look at my core.  Not the core you see.  But the core I know.  There exists selfishness.  And pride.  And laziness.  And carelessness.  And insecurity.  (Ouch.)

But let this be a line drawn in the dirt.  The old has gone, the new has come.  These are the promises and the Truth I hold on to.

I want to be NOW who I hope to be THEN.

Period.
The End.
Let it Be.