Brain Tumorversary Day...

Anniversary.  Birthday.  I don't quite know what to call it.  All I know is 1 year ago today, Jon was diagnosed with a brain tumor.  We have survived a full year.  When I mentioned to Jon that this date was approaching, he paused and said, "I can't believe I've lived with this eye pain for a year now."  If my kids were to comment on today marking 1 year, they would say, "I can't believe our dad has looked different for a full year."  If you were to talk to our parents, they would say, "I can't believe we've prayed this fervently for a year now."  If you asked Jon's co-workers about today, they would say, "I can't believe it's been a year since you've led worship at church." But me?  I can't believe we've survived a full year.  365 days is a lot of days.  The impact of those days are different, depending on who you ask.  Those 365 days held long nights in the hospital.  They held therapy appointments where Jon learned to eat, drink, walk, balance, throw, catch... again.  The past 365 days held months of Jon not being able to drive.  5, to be exact.   Those 365 days have held tears and pain and questions.  They have held celebrations and rejoicing and victories.  We have watched God show up in very practical ways through very beautiful people.  We have experienced the "peace that surpasses understanding" and can testify to its power.  We have experienced miracles that doctors cannot explain.  We have heard God say "Yes."  We have heard God say "No."  And we have heard Him say "Not yet."    And through each day, we have fallen deeper in love with each other.  We have fallen deeper in love with our children.  And we have fallen deeper - much deeper - in love with our Creator God.   Gratitude is our chief emotion.

Over the next few days, I plan to feel. More than I do on a day to day basis.  I want to let myself feel what I felt a year ago.   I plan to remember.  I plan to read texts I sent one year ago...  Telling of shock and disease and fear.  I plan to process it with Jon.  And hear what he feels.  The 24 hours between diagnosis and surgery was a blur.  We didn't have much time to think and process and feel.  So I want to go back to that place.  And feel it again.   I plan to grieve and celebrate.  And remember where our God has brought us from.  What He has done.  To see the deep deep pit and sit in wonder at His goodness.

One year ago today, our lives changed.  We lost much.  We gained much more.  Lost physical things. Gained spiritual things.  The trade off has been painful but beautiful.  I have never trusted God more. I have never believed Him more.  I have never known His faithfulness more.

Tis so sweet to trust in Jesus.  
And to take Him at His word
Just to rest upon His promise
Just to know, "Thus sayeth the Lord"

Jesus, Jesus how I trust Him
How I've proved Him over and over
Jesus, Jesus precious Jesus
Oh for grace to trust Him more.  


Happy Brain Tumorversary Day, Jon Ramsay.
You are the most courageous, handsome man I know.

And Happy Brain Tumorversary, God.
If I didn't know you so well, I'd think you were just showing off for the past year.   ;)
Thank you.


ADDITION TO THIS POST.....

YOU GUYS!!!!! Tonight, we drove to Mission Hospital, went to the ER, waited for an hour, and then got to hug, look into his eyes, and thank our ER DOCTOR from one year ago tonight! This doctor saved Jon's life! He trusted his gut when Jon came in with his headache, and ordered the most extensive tests. We just HAD to hug him and thank him!!! He said this was the highlight of his year! What a blessing that God allowed us to track him down!!

Beards, Bangs and Bigger Fish...

My husband recently grew a beard.  Not your typical, nicely groomed beard.  But a gruff, scruffy, long, full-on mountain-man beard.  He and 9 of his buddies had decided to hike Mt. Whitney and in a spirit of manliness, outdoors-ness, and all things rugged and mountain climb-y, Jon decided to stop shaving until the hike.  Now the day of the hike has come and gone, but the beard is still here.  Jon hasn’t gotten around to shaving it and he’s kind of indifferent toward it.  What’s interesting though is that I get approached ALL the time - by both husbands and wives, friends and strangers - with the exact same question:  “So, how do YOU like the beard?”  This is usually posed by wives who can’t believe I “let” my husband have a beard or husbands who are trying to convince their wives to give a green light to facial hair.  The first time I was asked, without even pausing to think, I blurted out, “His beard? Oh gosh, I have way bigger fish to fry than to spend time hating on Jon’s beard.”  My response surprised even me a little.  But it was true.  Time has a way of offering perspective.  Years ago, I would have absolutely cared.  Who wants scratchy kisses?  I mean, really.  Until your husband has a brain tumor and survives and then you realize that the person who wants scratchy kisses is you.  I want them.  I want his kisses in whatever form they present themselves.  It’s interesting how Life does that.  Refocuses you. Jon once spent 2 years saying he wanted to shave his head and I kept talking him out of it.  Then one day, he said in passing, “Man, I just want to shave my head.” And I paused and thought to myself, “Why the heck do I care so much?  If he wants to shave it, he can shave it.”  And so we did it right then and there.  And guess what?  The world didn’t stop.  “But he has the best hair!  Many men would kill for his thick, beautiful hair.  Why would you ever want to shave it??”  Well, because…  Bigger fish. 

I remember when I was a new mom and my son Jackson wanted to wear his Superman costume to the grocery store.  “Sweetie, that is not appropriate.  We wear clothes to the store, not costumes.”  Fast forward 8 years as our 4th child heads out the door in her princess dress.  “You look beautiful, Snow White!  Let’s go shopping!” I exclaim, much to my daughter’s delight. 

Time.  Life.  Perspective.  Oh how I wish I would have had that from the beginning.  How much time did I spend ‘Majoring in the Minors?’ Too much.  Taylor begged to cut bangs for a full year.  “But honey, bangs are more trouble than they’re worth.  Growing them back out is such a pain.”  But after a year, I took a deep breath and thought to myself - Bigger fish.  So we cut the bangs.  And she looked beautiful.  And she loved them.  And I did too.  And now, a year later, she wants to grow them out again.  And so we start the growing process.  And if she isn't patient enough to let them grow out, and decides to cut them again?  Bigger fish.  

What are the bigger fish?  I want my kids to be kind.  Compassionate.  Generous.  Forgiving.  I want them to reach out to the kids in their school who are “outsiders.”  I want them to love mercy.  I want them to walk humbly. I want their hearts to break for those who are in need.  I want them to know that God loves them.  No matter what.  And I do too.  I want my husband and  I to have a thriving marriage.  I want him to feel respect and I want to feel loved.  I want to parent our children as a united front.  I want to be on the same team.  No matter what.  I want to encourage him in his passions and experience him encouraging me in mine. I want our intimate relationship to always be exactly that.  Intimate.  I want to be a kind and loving light in our community.  I want to model to our kids the compassion, grace, mercy, generosity…  And on and on the list goes.  

SO.  If something conflicts with those Big Fish, then I will give them time and attention.  If something doesn’t conflict?  Then we cut the bangs.  Shave the head.  Grow the beard.  

There is freedom in Majoring in the Majors.  A release of what other people think…  No more people pleasing.  No more unimportant standards / expectations.  Allowing my husband to be a grown-up man and choose his own darn haircut.  ;)  Allowing my 7 year old to stretch her creative muscles and experiment with bangs.  Because as time goes on, the battles we face in life are going to get bigger and more important.  Our battles must be chosen wisely and with intention.  

And so today I will run errands with Belle and Ariel.  I will pin back my 8 year old’s bangs as they are in that “awkward” stage, and tell her how beautiful she looks.  And I will grab hold of my husband’s long, scruffy beard, pull it toward me, and smooch those lips.  If I can find them in there.  ;)  Oh, and just for the record, in case he reads this:  Yes babe, “no motorcycle” is still on the GIANT FISH list.  ;)

What?  

I’m still a work in progress…  ;)  

--------------------------------

2nd grade birthday book for her classroom... "Really honey? You get to pick only 1 picture to put in your book. You want this one? Of you last year? Dressed like Anna?"

Perfect. Bigger Fish. 

TO: My Husband FROM: Your Stay at Home Wife/Mom

I wrote this "Note" on Facebook about a year ago.  I wrote it at 9am while my 8 month old sat on my lap and I typed with one finger while watching The View.  Seriously.  

I did not write it about my husband.  My husband actually does all of these things.  Well, except for the boob thing while nursing.  And the non-sexual touch.  (To quote him: "Non-sexual touch? What the heck is that?")  ;)  

I wrote this because of the many young mom's I have had the privilege of encountering over the past 10+ years, since I became a mom.  So many moms shared with me the exact same story with the exact same frustrations.  So on a random day in August last year, I posted this without even a thought.  After 17,881 Shares on Facebook, I realized this topic hit close to home for many women.  Is this Note exhaustive?  No.  Does it cover the other side of things for the man?  No.  But did I get hundreds of emails from strangers (many of them from men) thanking me for starting a much needed conversation in their marriage?  Yes.  So I thought I'd post it again.  A few words revised.  But the same note, 1 year later.  In case someone needs it today....

-------------------------------------------------------------------------------------------------------------

To: My Husband.

From: Your Stay at Home Wife/Mom.

I used to think it would be so romantic if you just knew me so well, that you knew exactly what I needed.  I would never have to verbally share with you my needs because if you really loved me, you would know what they were, even before I did.  You, my love, were to be nothing less than a mind reader. It sounded fabulous and romantic.   However, we’ve been married awhile now. And reality has set in.  You are an amazing man.  An incredible husband.  But I must tell you: You are horrible at mind reading.  And it’s not your fault.  I now get it.  It’s physically impossible. There’s nothing you can do to acquire this superpower that I wish you possessed.   So today, I am declaring that I am letting you off the hook.  No more guessing.  Today, I lay it out.  I’m giving you a peek into me.  You can choose to stop reading here if you enjoy the guessing game.  Ah, you’re still reading?  Awesome.  I love that about you.  You’re IN.  I knew it. 

Ok wait.  Before I express my needs, let me explain something that might be difficult to understand: 

I love our kids.  I love my role as a mom.  But honestly?  It’s tough.  And here’s the tricky part – those 2 things DO co-exist.  One doesn’t trump the other or cancel it out. I love it - And I’m tired.  It’s an honor – But it’s exhaustingly hard work.  I’m fulfilled - And I’m drained.  Get it?  Me either.  It’s tricky and complex.  But it’s called Motherhood and I’m in the thick of it.  OK, so in light of that, here’s what I need.  Or want.  TomAto….TomAHto. Here’s the reality in no particular order…. 

1) I need to refuel.  And it’s not by grocery shopping with only 1 kid instead of all 3.  I need to get out of the house.  Alone.  I need to ride in my car and listen to adult music.  I want to use the public restroom in the small stall. The one without the changing station.  Alone.  I don’t need extravagance.  [I mean, I won’t turn down extravagance, of course.  But I don’t need it.] ;) You know what I’d love?  To wander the isles of Target for an hour.  Or to sit at Starbucks alone for 30 minutes.  Or to walk in a shopping mall without pushing a stroller.  It really is that easy.  Will I come back completely changed and ready to conquer the world? Honestly?  Sometimes yes.  But sometimes, no.  But what I WILL come back with, is a little more life in me.  I will have a spring in my step.  It’s a little shot in the arm.  I reeeeallly need this.  When you ask if I want it, and I say, “I’m OK.”  I need you to tell me to go anyway. 

2) Please don’t call and ask what’s for dinner.  If anything, call and ask, “Do we have dinner plans?  If not, can I stop by the store and pick anything up?”  I love you.  And I love providing nourishment for our family.  But when I have spit up running down into my bra and a toddler who just learned to take off his own dirty diaper, I could do without The Call.  

3) When I take the kids to the pool, please know that I didn’t spend the day poolside with a cocktail.  Sometimes I feel like that’s how you view the life of a stay at home mom.  In reality, every 2 minutes, I’m doing roll call to make sure everyone is above water.  “1..2..3..…1…2…3…” over and over and over and over.  I’m changing poopy swim diapers on hot concrete and peeling wet swimsuits off of tiny bodies because they have to go potty AGAIN.  I’m schlepping towels and sunblock and swimming goggles and dive toys and flippers and water shoes and cover ups and diapers and wipes and snacks and drinks.  I have one child who has no fear of water and is jumping into areas he’s not allowed to, and another child who’s deathly afraid of the water and is leaving claw marks in my arm.  Blood has been drawn.  A walk in the park is not a walk in the park.  It’s chasing, and counting, and disciplining and refereeing.. A day at the pool is all of that, in a big hole of water.  Attempting to avoid death.  For real.

4) I’ve been nursing a baby all day long.  My “nursers” are over stimulated.  The last thing I desire when you get home from work, is to have one more person perusing the “food court.”  I realize it's probably hard to have parts of my body now belong to a bald, drooling, demanding "significant other."  I don't want you to feel in competition with our little one.  You win.  Except when it comes to my boobs.  My boobs are sustaining a human life right now, so you get trumped.  If you will understand this and not let it become a point of tension, I’m certain you’ll get extra rewards in heaven.  (or at least extra a grateful wife)  

5) However, when we’re home and you walk by me in the kitchen and grab my butt, and I swat you away, I don’t mean it.  I secretly love that you still want to be playful and frisky.  The timing may not be right, or I just don’t know what to do with your playfulness because my brain is counting the number of loads of laundry waiting for me.  But please don’t stop.  I need to know you still like me. Deep down I want to be pursued.  I understand this is confusing in light of the point above.  I can’t explain everything.  I’m just informing.  I’m complex like that.  

6) I need a Girls Night Out every once in awhile.  While we both know you rock, I  need some time with girlfriends as well.  Unless, of course, you would like to discuss bikini waxing, my period and the latest fashion trends with me.  No?  Cool. Girl’s Night Out it is.  

7) I need non-sexual touch.  I know you don’t quite understand what that is.  Just pretend it’s valuable and possible.  The grabbing mentioned above is fun and all, but sometimes I just want to feel your arm on my shoulder, without it slowly moving a few inches south.  I need your physical affection without another motive.  I need to know that you like to just be with me.  

8) When you walk in the door, let’s make a deal:  You won’t walk straight to the family room and collapse on the couch with the remote… And I won’t greet you at the door with all 3 kids, dump them on you and clock out.  When you come home from work, let’s do it together.  Share the load.  If you need to decompress from your day at work, please take the long way home.  Drive around the block a few extra times if you need to.  I'm not meaning to sound harsh.  And it's not that I don't want our home to be a safe place for you to decompress.  I do!  But coming home every night and making a beeline for the couch in front of the TV makes me feel not valued.  I need my partner.  My teammate.  And when it's been "one of those days" for either of us, let's give the other person a heads up.  That way we can intentionally create space for the other person to vent, rest, chill, whatever.  (I think it's a great learning for the kids when I can say, "Daddy has had a long, hard day at work.  Let's get him a drink and a snack!" and allow them to be a part of loving you on "Those Days.")  

9) That trip we took with the kids was awesome.  We created family memories.  We had fun.  But that’s exactly what it was – a “trip.”  I need a “vacation.”  A vacation is like a trip.  Just without the diapers and wipes and baby food and high chairs and primary color toys.  Oh, and without the tiny humans that come with those things.  Don’t get me wrong, I love those tiny humans. But a break to refuel, refresh, clear my mind, etc..is invaluable.  I have no way to explain what a true vacation will do to me.  Other than to say hotel room sex is fabulous.  The end. 

10) When you come home to a clean house, be assured it didn’t look like that hours earlier. There were crackers smashed on the floor, toys everywhere, food smeared on walls, 8 outfit changes from our preschool daughter strewn around the house…  If you come home to a clean house, please notice.  Please say something.  Acknowledge that it obviously took superhuman powers to get it to the state it is.  It sounds silly and needy.  Maybe I am.  But you know that “atta boy” you got from your boss at work that made your day?  Ya, I need that too.  And if your jerk boss never tells you "atta boy," I'm sorry.  Could you still tell me?  ;)  (Just to clarify, I'm not saying you're my boss.  It was just an analogy.  Settle down there, big guy.)  ;)  

11) When we go to a restaurant, sometimes I need you to offer to sit next to ‘The Kid.’  You know, the one that needs extra assistance.  The one that cries and grabs and throws and needs.  When I say, “No, it’s OK. I’ll sit next to The Child” I need you to gift me with the break anyway.  I’m not saying every time.  But we both know that going to restaurants with The Child is difficult. I’d so appreciate sharing that load with you. 

12) I need to go on a date.  With you.  I need to wear clothes that don’t smell like any type of child’s body fluid.  I need to order food for just me.  I need to eat it while it’s hot.  I need to look into your eyes.  I need to hold your hand.  I need adult conversation.  And while the topic of kids might creep into our conversation, let’s commit to keeping that to a minimum.  We spent so much of our dating years getting to know each other.  Asking questions.  I was your student and you were mine.  A lot has happened since then.  You and I have changed and grown. Let’s learn about each other again.  Re-discover who we are today.  Let’s know and be known.  Let’s date. 

13) Let’s commit to not comparing.  My friend might be prettier.  Or a better homemaker.  Or parent with ease.  Her husband might be more romantic.  Or more successful.  Or a more engaged father.  There’s always going to be someone who does what we do, but better.  Or so it seems.  Let’s commit to not comparing.  Comparison will steal our joy.  It will take the wind out of our sail.  It will make us feel defeated.  Or frustrated. Or angry.  Or all of the above.  Let’s be honest - everyone else is just as messed up as we are.  We just see the beautiful, shiny outsides of them that they put on display, and tend to compare it to the dysfunctional, broken insides of ourselves that only we know.  Let’s just be the best “us”we can be – keeping our eyes ONLY on OUR path.  I love you.  I chose you and you chose me.  Let’s be in for US and US only.

Thank you for hearing me.

You may not understand it all.  I don’t even know if I do.

This season is glorious and difficult.

And in all the uncertainty, the only thing I do know is there is NO ONE I’d rather do this with, than you.

You are exactly the “who” I need. 

The other stuff is just the “what” I’d love from you.  I ask you to just try. 

And if you’re willing, I’d love a list like this from you in return.
This is a tough season for us both. I know you have needs you rarely express as well and I’d love a peek into those if you’d be willing to share. 

I love you and love that we’re living in what we’ll someday call “the good old days.” 

You have my heart forever.

<3

BEST Date Idea EVER!!!

So I'm pretty sure my friend just went on the best date ever.

She and her husband are in a busy and difficult season of life, as they are raising 3 young (and active) children, they've had job transitions, and most recently a close family member was diagnosed with a terminal illness.
So as her husband's birthday was approaching, she asked him what he would like to do to celebrate his big day.  His response was brilliant:
"I'd like to do a 'Random Acts of Kindness Day' date."

Now friends, this might be the coolest date idea EVER.  We've all heard of doing a "random act of kindness."  But devoting a whole date to it?  Or an entire day?  What a life-altering, perspective changing experience!  Serving others changes you.  It just does.  Taking your eyes off of your own circumstances for a day and having eyes to see the world around you and searching for ways to bless that world?  That's a game changer.

I'm going to suggest this is the best 1st Date idea ever.
It's also the best 100th Date idea ever.
It's also the best Family Date idea ever.  (To cultivate a heart of service into your children?  Priceless.)

I literally got off the phone with my friend and ran to my computer to write this down.
I cannot wait to do this with my husband.
And I can't wait to do this with my kids.

You can sit down and brainstorm ideas that work for you and your community.
But here's the list they made....

1)  Get 2 rolls of pennies and place them around the fountains at the mall, so kids can make wishes.
2) Buy school supplies to fill backpacks for kids/families in need.  (When they dropped off the supplies, they also brought the girl who organizes it all a Starbucks.)
3) Go to the hospital and leave coins at vending machines.
4) Buy fancy sea shells and anonymously drop them around the beach for children to find.
5) Buy a box of dog treats and deliver to the Dog Park.
6) Go to Subway and buy 5 footlong sandwiches and have them cut into 10, 6-inch sandwiches.  Buy a bag of apples and a case of water bottles.  Drive around downtown and hand out to the homeless.
6) Buy lunch for the person behind you in the drive-thru line.
7) Go to the laundromat.  Put quarters in plastic ziplock bags and tape them to random machines.
8) Drive around town and leave coins on Parking Meters
9) Buy ice cream from the ice cream man for kids at the beach.  (this could be done in your local neighborhood too)
10) Buy Starbucks for the person behind you.
11) Go to Costco and buy 2 meals and drop off with 2 different families.  (they did 1 family who is expecting a baby in 2 weeks, and another family who just had a baby and the mom had her first day back at work that day.)
12) Go to an embroidery/tshirt making store and have them make a personalized custom item for someone going through a difficult situation and deliver it.  (They had a personalized baseball hat made for a little boy they know who was recently diagnosed with cancer.  They put his "I'm a fighter" type nickname on it.)
13) Buy flowers and drop them off during BINGO at the local Senior Center.
14) Buy all the supplies for banana splits and dropped it off at the door of a person who has encouraged your life.

The possibilities are endless!
Be creative!
I love these ideas because they bless special people in your lives as well as total strangers!

Sometimes we just need to let someone go in front of us in line.  That act alone can shift our focus from "self" to "others."  
And yet other times we need to spend several hours proactively blessing and serving others.  It's healing and hope-infusing.

Let's do this!
And the more we do it, maybe, just maybe, these random acts of kindness will become less "random" and more "second nature."  And soon we'll just call it An Intentional Life of Kindness.
That would be beautiful.
I'm in.

Squeeze and Space

I was recently invited to write a guest blog post for the incredible writer/blogger/speaker, Leeana Tankersley.  Leeana has a beautiful gift with words and her newest book, "Breathing Room" is soon to be hot off the press!  I feel SO honored to have been asked to guest blog on her site.  I invite you to check out her blog and her new blog series, Squeeze and Space, that I was invited to write on.  :)

http://www.leeanatankersley.com/2014/08/squeeze-space-deanna/

The Big MRI Results.....

First, let me thank you for your 'grace' on my last post.  I typically have time to re-read posts before I hit "publish."  I usually have time to process and think etc... Today, I had a short window of time coupled with a myriad of emotions.  Probably not the best combo.  ;)  But you were kind and gracious and let me express my "half baked" thoughts.  Thank you.  :)

Well, to quote my Facebook status update: "Today the miraculous DID happen!  Jon's tumor did NOT grow!!! NO radiation! (for now at least)  Next MRI is in 6 months!!!"

I honestly still can't believe it.  I'm still trying to exhale.  Here's how it went down:

Our neurosurgeon called us out of the regular "doctor/examination room" and walked us into his personal office.  He sat down at his desk and we sat down across from him.  He angled his computer screen so that we could see it and proceeded to tell us he had very good news for us.  He showed us Jon's 9 month (post op) MRI and compared it to Jon's 6 month (post op) MRI.  He said the tumor size is virtually the same as it was 3 months ago.  The tumor had not grown at all.  He said this was VERY good news.

Let me say it again and try to explain how cool this is:
*The MRI that was done right after Jon's surgery revealed a tiny sliver of tumor that our Neuro had left in surgery (attached to his facial nerve).
*Jon's 6 month post-op MRI revealed the tumor had grown and was growing at a fast rate.  (Typical rate of growth is 1mm per year.  Jon's tumor had grown 6mm in 5 months!)
*Today's 9 month MRI looked exactly the same as it did at 6 months.  Which is very odd, since it was supposedly growing at such an alarming rate.

The Doctor was baffled by this whole situation.  He said, "The only possible explanation for this, would be that the MRI that was done right after Jon's surgery was inaccurate.  It must not have captured the whole thing.  It must have been this size since Day 1, because tumor's don't just grow at alarming rates and then stop growing out of no where at 6 months."  I responded, "Yes, that could be.  OR the fact that we've been praying and have a ton of people praying."  He looked at us and said, "Well, there's that too.  Who knows.  We'll never know!"

*Since the tumor is not growing any more, and it is on the edge of Jon's brain and not pushing onto his brain or growing into his brain, the doctor said NO RADIATION is necessary at this point!

The reality is, there are 2 options:
1) If the tumor was this size all along, then Jon would have undergone Radiation on his brain unnecessarily!  God prompted us to ask for that "pause button." We got a 2nd and 3rd opinion and were patient to take the 3 months to double check the tumor's growth.  God's hand was so clearly guiding us and with us!
2) If the tumor was indeed smaller right after surgery and then grew extensively in the first 6 months... and then just stopped growing?  That is nothing short of a miracle!!!  God's hand was so clearly on Jon!

The way I see it, it doesn't matter what in the world happened.  We may never know.  And I couldn't care less.  God is good!  He is faithful!  He has been so present - guiding each step of this journey.  We feel SO grateful for the prayers of so many going up on our behalf.  THANK YOU!

So what is next???
Jon's next MRI is in 6 months.  If Jon's tumor doesn't grow and that MRI reveals everything has remained the same/stable for 6 months, he'll then switch to having MRI's only once a year!  Yes, it's once a year for the rest of his life, but we'll take it!  They will monitor the tumor every year to watch for any growth.  If it ever grows, then we'll begin the radiation/surgery conversation again.  Until then, I'm washing my hands of that topic!  :)

The Neuro said now we get to just focus our attention completely on Jon's recovery and his post-op illnesses/issues.  Possible eye surgery coming up... keep working on his balance... keep expanding his stamina... keep working on his management of details.... talk about possible specialized surgeries on different nerves to help bring movement to his face... etc... etc... etc...  Yes, there is still a lot to deal with.  But a growing tumor aint one of them!!!!  :)

Thank you for praying.  Thank you for supporting and encouraging.  Thank you for believing with us.  We are so humbled by your love.  We are so grateful for you.

Please continue to pray with us - specifically for the biggest issue at hand - Jon's eye pain.  We are currently looking at eye surgery options with our health insurance etc...  Please pray with us that God would open doors for that to be done.  It's not guaranteed that would eliminate his eye pain, but there is a big chance it could!  And please continue to pray for Jon's facial nerve to restore.  We believe God is able!

Thank you again.
And again.
And again.

Going to bed with a grateful heart,
Deanna

Dread...

Today at 3:15pm, Jon and I will meet with his neurosurgeon to get the results from his MRI.  This MRI will reveal if Jon's tumor really is growing as fast as they found it to be growing at his 6 month, post-op MRI.  At 3:15pm we will find out if Jon needs to have radiation on his brain or even a possible 2nd brain surgery.

Our kids are attending a water sports camp down in San Diego this week, so I just drove up to meet Jon at his appointment.  I didn't hit any traffic, so here I am, 90 minutes early.  I glanced over at my passenger seat and there sat my laptop.  God's gift to me in this moment.  A chance to write.  To process.  To gather this jumbled mess of emotion inside of me and try to put it into words.  God bless Starbucks and their free wi-fi.  :)

I have never believed more in the faithfulness of God.  God has been SO faithful to us in this season. I don't doubt His goodness.  He is so good.  He can be trusted.  His people have surrounded us.  He has provided for us.  Sustained us.  So what do I feel right now?

Dread.
I am dreading this appointment.

I remember driving Jon to the Emergency Room 9 months and 7 days ago.  Jon and I were both certain they were going to send him home with a dose of Extra-Stregnth Something for his headache and we'd call it a night.  Instead, they said he had a brain tumor and admitted him to ICU.

I remember driving Jon to his 6 month, Post-Operation neurosurgery appointment.  Jon and I were both certain that they were going to send him home with a clean bill of health.  I mean, he had the surgery. They removed 98% of the tumor and cauterized the tiny sliver left, it so it wouldn't grow any more.  It was successful.  He now has SSD (Single Sided Deafness) and facial paralysis to prove it.  He's paid his dues.  Instead, they said the tumor was growing back at an alarmingly fast rate.  They scheduled him to start Radiation a week later.

After canceling his Radiation to buy us some time to make an educated decision, Jon and I got 2nd and 3rd opinions.  We drove to USC to be seen by "the best." Then he was a Case Study at Hoag Hospital in Newport Beach.  Each time, we were hoping someone would say, "You're good!  Your journey is coming to an end!"  Instead, each time we were told action would need to be taken.  Different doctors had their differing opinions on the timeline, but all agreed that action is needed.

We got our neurosurgeon to agree to a 3 month "Pause Button."  Basically, let us wait 3 months and then do another MRI.  If this MRI reveals the tumor really is growing as fast as you say it is, we will move forward with more treatment.  There is no harm in double checking.  Today, those 3 months are up.

We're now 60 minutes away from our next "big" appointment.  And I am dreading it.  This isn't my first rodeo.  I've driven into this driveway.  I've been hopeful.  I've expected the best.  And I've walked out feeling like I got socked in the gut.

I realize these feelings are raw.  Not polished.  I probably shouldn't even hit the "publish" button when I'm done writing this.  Not sure if I will.

It has nothing to do with the faithfulness of God.  It has nothing to do with His goodness or His provision or His grace.  It has everything to do with my flesh.  My flesh is so weak.  It's tired.  I know that I know that I know that whatever 3:15pm holds from the doctor will also be accompanied by whatever it is we need from God.  God has NEVER left us lacking anything.  He has provided what we need - and abundantly more - for each leg of this journey.  So my dread is not that I worry about our needs being met.  It's just the dread of knowing that we live in an imperfect, fallen, broken, sin-filled, disease-ridden world.  And it's painful and hard and exhausting and scary and unsure.

I don't have answers. Yet.  I don't see or know what God sees and knows.  But I will tell you that I've prayed.  A lot.  I've asked God for good things.  I've told him my fears and expressed my dread.  And what is amazing and beautiful?  He is near to me.  So present.  I can feel Him.

I'm going to hit "publish" on this blog.  I realize I may offend some people, because I'm sure there are people who can't rectify the "rub" of believing God to be faithful and at the same time dreading something.  But I'm going to hit "publish" anyway - because I realize there are many people who are afraid to tell God that they are mad or scared or feel dread.  Sometimes we think our prayers need to be all sunshine and rainbows.  We think we should be grateful for our blessings and that's it.  Well let me give you permission to be real with God.  God can handle it.  Tell Him exactly how you feel.  Tell Him what your worries are.  Tell Him your struggles.  I am telling God today, I believe you.  I have faith in you.  I know You to be faithful.  But I am dreading this appointment.  I resonate with Mark 9:24:  "I do believe!  But help me with my unbelief!"

Would you pray with Jon and me?  That God would bring healing.  And that God would give us peace.  And that if we need to make decisions, that He would give us wisdom.

We are SO grateful for the gift of His presence through all of this.  And we are SO grateful for the prayer support from all of you - who live literally all around the world.  God hears us.  He cares for us.  He knows our story.  He is able.  He is faithful.  He is good and generous and extravagant in His love and grace applied to our lives.  We are so grateful.

I want to encourage you to invite God into your journey.  Invite Him into those painful places.  He alone can heal.  He alone can bring true peace. He alone can bring comfort.  Be real.  Even with God. He can handle it.  Don't think that's what prayers and talking to God should look like?  The Bible says otherwise:

Psalm 55:22 - Cast your cares on the Lord and He will sustain you.
1 Peter 5:7 - Cast all your anxiety on Him because He cares for you.

Join me.  I'm taking my dread and "casting it onto Him."  My palms are wide open.  I'm not pretending like unicorns are sitting in my hands.  It's dread.  And God will take it from me and sustain me because He cares for me.

Jesus loves me, this I know.
For the Bible tells me so.

Well, it's 3:03.  I gotta jet.
Courageously hitting "publish" now....
:)
xoxo