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  The outdated magazines.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...

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:


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