If you're lucky, a frozen pizza

As I was reading one evening, I came across a paragraph that I read over again about 5 times.  I put my head up and looked around. It was like the author had looked into our life, and put it perfectly into words: 
"...and occasionally he would just seem to disappear, as if the only way he could cope with the sensation (pain) was to absent himself from his own body."  *


A few paragraphs later, same thing:
"Despite all this, Will did not complain.  This was why it had taken me weeks to notice that he suffered at all.  Now I could decipher the strained look around his eyes, the silences, the way he seemed to retreat inside his own skin.  ...  Sometimes he was in so much pain that his face actually leached color, turning to pale putty.  Those were the worst days."*
 And then a couple of chapters later, again. 


I love to read, not that I have much time to read for pleasure.  When I do, a warning comes to my family in which they know clean laundry will become a mountain in the laundry basket and dishes won't get done unless they do those things themselves.  Also, sandwiches or cereal may be the dinner choices a few nights in a row.  If you're lucky, a frozen pizza. :)
Yes...in the second to last full week of school, I decided to start a book, because there wasn't enough going on! I finished in four days. Many of you have probably read this story, as it released in 2012 and is now a movie releasing in a few days.  Going into it, I knew the premise of the story of "Me Before You"...what I didn't realize was that it would strike such a chord in me. 


Now...
Do I live with a person who is quadriplegic?  No.


Do I question the value of one's life based on their physical abilities?  No.


Do I live in a small English town with a castle sitting in the middle of it?  Ahem, far from it.


Have I been a caregiver to a man I love, trying to make his life good and worth every minute he's around, trying to balance the man-vs-patient, caregiver-vs-wife, "independent grown man"-vs- "so desperately needing help", all while moving forward with the life that's happening around us?  YES.


Things with his health lately have been status quo and most people that just see him around right now probably think nothing's really wrong with that man.  Bad days, better days, and all the in-between.  Although I say it cautiously, no hospital stays in over a year.   But where we have been is not a distant memory, and what he lives with every day would put most of us in bed for weeks.


Whatever life brings, I hope and pray each of us value each day.  That's what I seem to always come to in this blog: appreciate the life you have today.  Appreciate those around you, even if they are getting on your very last nerve and cause you to do things like finish a pint of ice cream or a bag of caramel corn.  :)


"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow.  God will help you deal with whatever hard things come up with the time comes." Matthew 6:34


*  from "Me Before You" by Jojo Moyes, Chapter 7, pages 102, 103

Dance in Austrailia

Down on my hands and knees on the kitchen floor, it was evident I hadn’t mopped in a while.  Sweeping gets done daily, but gross….the floor was gross.  Still in my scrubs from the workday, dinner was started on the stove as I found myself down on the ground searching for pills.  The med box had been filled for the week, but then he accidentally dropped it, sending every one of the 120+ pills bouncing around the kitchen.  The girls quickly jumped up from the couch to help me with the search and rescue mission so daddy didn’t have to get down on the floor.   After moving appliances and all, all pills were recovered, and only two pricey casualties were counted.  Not bad.  

The night prior while driving home on dark, country roads after a basketball game, a game that had the worse officiating everever ever, a deer decided to run into the side of our van.  No injuries (human, anyway), no true damage to the automobile.  Arriving home, the girls ran in to ready for bed, Seth was riding back with his team…but what was that humming sound?  Searching revealed the dishwasher full of dirty water, the humming from the pump that wasn’t working.  Or maybe it was doing what it was supposed to do, who knows.  This was after the disposal had been replaced earlier in the day, and apparently a step had been forgotten, ignored, disregarded, etc.  (guess you can’t skip any steps in the instructions)  All the stuff from under the kitchen sink was still in a box across the room.  That was good, because water under the sink is much easier to clean up if all the bottles of cleaners and box of trash bags are not under there.  I had done that a couple of times recently. 

Finally getting to bed after picking Seth up from the high school, I looked at Chad’s knee.  It was obvious he’d been doing a little too much the last few days.  When a knee resembles a cantaloupe, along with the pre-existing extensive vascular issues in the same limb, it equals something that looks pretty yucky and painful.   He didn’t dish any guilt out at all but the feeling found it’s way to me anyway, as I felt maybe I’d had him do too much lately.

After these two days, I considered a move to Australia.  Maybe Alexander had something there.  :)  I had been down for a few days with fever, coughing up at least one lung, and producing more mucous than a basketball arena could hold.  And you know what happens when mom is sick.  Despite their best efforts…you know.   You just know.   (by the way, spend a dollar extra for the tissues with Vicks in them…they are life-changing!)

All things considered, these were all minor and temporary inconveniences.  Other than the health-issues-dealt-with-by-the-elderly-and-us, the things that caused stress those few days are all resolved now.  The kids are happy and smart and healthy and have met their reading goals for the 6-weeks(ALL three of them).  The floor got mopped and the dishwasher still works.  Got all the deer fur off the wheel well.  Laundry never ends.  No leak under the sink right now.

Moms, nurses, and generally anyone who lives with a chronically ill person are not supposed to be sick.  Saying “my cough is keeping me up at night” doesn’t compare to his over-stimulated nervous system that leaves him with countless sleepless nights. (NICU pals, think of a preemie…they get too much external stimulus and it freaks their nervous system out….same with the 40-year old non-preemie at our house)  No!  You’re the keeper of the schedules, the chauffeur, the chef, the organizer, the alarm clock, the cheerleader, and you never feel like you have a justifiable reason to complain of anything hurting or aching.  And that’s just normal every day around here.

A friend of mine is leading a somewhat similar life to mine,although they have very recently been dealing with her husband experiencing another serious health scare.  Her kids are a little younger than mine, but there are many similarities.  Discussing the fact that the issues we deal with are more often dealt with by people a few decades older than us, she simply stated, “we’re just early to the dance.”  I’m rarely early for anything but work and school.  But I love the way that’s stated.

We often talk about God’s timing and perseverance with the kids and each other.  There are ups and downs and good days and bad days.  When you have the normal every day bumps, and add the old-man-in-a-young-man’s-body issues, it just adds a different twist. I guess we are just early to the Golden Oldies dance!  Wonder if they have those in Australia?  :)

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

 

 

Not at all

Whatever life has dealt you, there are sometimes the darkness seems too heavy to shake off.  Circumstances beyond our control leave us feeling everything except that this is "the most wonderful time of the year."  I'm thankful for the kids in my house filling it with excitement and joy!

This year has been a pretty lonely one, you could say.  You question this.  It's true my children often talk to me two at a time.  I guess they think that because there are two ears on my head, I can hear and comprehend two completely different conversations at the same time.  Multi-tasking is a must, but I've gotta admit even that one is next to impossible for me to do well.  They are getting older and are all three very bright, intelligent kids, but the fact that mom can still only really listen to one person at a time doesn't phase them. 

Even with all of that conversation, lonliness has been a faithful companion in 2014.  It's true that even working as a nurse in a school surrounded by 800 kids and 70 wonderful staff members, the reality of being the only one around with a medical background can leave a lonely mark.  

-Driving to and watching hours of practice and games, even when there are incredible parents of other players around you, lonliness can come along.

-As a 30-something standing over my husband, looking at a group of physicians and demanding the best care for him while taking in what they were saying, and having to make life-impacting decisions(again)...lonliness hung out.

-For many months of the year, pushing him around in a wheelchair was lonely, at times even ostracizing, as others in a crowd either disregarded the handicap or stared with remorse.  That was eye-opening, I tell you.  

-Listening to a nurse tell me over the phone how my husband really wasn't doing well and possibly needed to move to a different unit late one night made for a very long, lonely night.  I laid there questioning if I be a good mom and stay home for my kids or be a good wife and be there as a lookout for him.  

-And even, dare I say, in church...A place to worship with other believers...loneliness finds it's way there, too.  Because how many of those people really know what's going on in your life?  And if they did, what would they think?

-Seeing others being given assistance when you are working so hard just to stay afloat and hold things together, inside thinking "Hey---see this family? I'm drowning over here,"  When in reality you have no idea yourself how others could give you any help.  That is lonely.  

-And to be brutally honest, all that has happened this year has made it one of the hardest and loneliest seasons of marriage in 18 1/2 years.  

Am I asking for pity or anything of the sort?

NOT AT ALL. 

Because I'm here to say that despite this fog of lonely that's been hanging around this year, never before have I been more certain that God is with me.

At Christmastime we hear of Christ being called Emmanuel, meaning "God with us."  And that doesn't just encompass Him coming to the world as a baby.  It means He is still here.  He is with me in every situation, every decision I have to make.  With each lonely minute I feel, I am not alone at all.  He is with me, and He isn't leaving.  I will cling to Him and He's not letting go.

That is the source of the joy and excitement in my family.  We are not alone.  We are celebrating Emmanuel.  

"Through these trials

You’ve always been faithful
You bring healing to my soul

I am not alone

You will go before me

You will never leave me..."

Kari Jobe

http://youtu.be/bfveawSAHJA

Help me to stand, and see up

There are so many times in life when I would like to lay down and whine and carry on.  You know, like the kid throwing a fit in a store when you don't like what mom's telling you.  Bury your face first in your hands and then into the chair that's by the Marshall's entrance.  The chairs put there for men to sit in while the ladies shop and check out...hard blue plastic.  But you don't care, you're going to make your point.  Burying your head and begging and pleading and "why?-ing" when you didn't get your way.

Surely that only happened to me with my kids.  (actually I like to remember that behavior only happened once with each kid...then they knew better and waited until we got to the car ;)  )

But that's what I want to do sometimes! 
That's not what we're supposed to do, darn it.  Although we all have come into contact with those adults who can't get past throwing tantrums, we're supposed to be the responsible adult that handles all the yuck...with great expectation from those around who are watching.  That's almost more daunting than the yuck itself.  Who is watching?  The people in my house, of course.  Anyone else?   What will they see?  Are they just waiting for me to mess up?  If I lay down and whine and wallow in the mess of life, will it affect them?  They're going to learn.  From me. 

Gulp.

Who do I learn from?  I learned an incredible amount from my parents.  (thank the good Lord I was blessed with the two best parents ever)  Learned a lot from my six awesome siblings, all of whom came-prior-in-line-of-succession, as dad would say. 
Trying hard to learn from my heavenly Father.  Easier said than done.  It's easier sometimes to act like the kid throwing the tantrum.  To dig my heels in the ground and demand my own way.

This is Molly Kate.  Molly Kate is almost two.  

She appears to be walking, but she's not doing it on her own power.  Molly Kate's muscles in her legs do not cooperate with her.  To walk (and play soccer) she is using the strength of her Daddy.  He's using a device she has called an UpSee to get her up in a standing position and "walk".  Molly Kate is the beautiful, precious daughter of my good friend, Tiffany, and her husband Barry.  Barry and Tiff have been dear friends of ours since college, and have walked through the last 20 years of life with us.  (for more about Molly Kate and her amazing family, click here http://elkinsfam5.blogspot.com/ )

Just like Molly Kate is using her Daddy's power to stand up straight, look forward, and move ahead, I must keep in mind to harness myself to my Heavenly Daddy in order to move in the best way possible.  That means trust.  That means even when I want to crumple up in a defiant whine, he won't let me.  If I use my Father's power, it is possible to keep from doing just that.

No matter the expectations that myself and others have for me, because I will mess up, this must be the choice.  Things won't always go as planned.  Life will have obsticles and I'll get lazy.  Lately I've so wanted to not keep my eyes up, to use my own power, to take care of it on my own.  But the overwhelming truth is that I can't.  Not on my own.  

Jesus savior, help me each day

Fill me with hope, fill me with faith

Darkness retreats at the touch of Your hand

Jesus savior, help me to stand

"Jesus, Help Me to Stand" by Alison Krauss

Apparently not

After six months of being out of his office, he returned yesterday.  He was greeted by a variety of salutations, some positive,  some negative. But, he went back.  

Currently, I'm listening to him beside me. He's asleep, doing a pattern of rescue breathing, occasionally needing a nudge when he goes too long between breaths.  But, he's here.  

When a set back happens in regards to his health, it usually takes us a while to want to bring it up.  We will then talk about it with eachother and close friends, eventually getting to a point where we will talk about it more candidly with more people, most of whom just don't get it.  But, we do.  

In all honesty, most people do not survive even one instance of what he has now had to recover from at least three times. When blood flow is stopped to an individual's lungs due to clots(not clot, but clots), the outcome is usually not positive.  He's now been given the chance to recover three times from that.  And all the other times he's had deep venous thromboses.   And all the times he went into burning buildings and came back out intact.   Some shake their heads, and in all honesty this reality can weigh heavy on our minds at times.  But we see it as God's still got plans for him. 

This summer was far from picture-perfect.  (I mean, can't we take just ONE picture where everyone looks at the camera and smiles?!?  Apparently not.) June was a blur.  July included watching big boy play some baseball and football.  Hearing of his kids' weeks at camp.  Spending a couple of days letting his family wheel him around while we tried to have fun as a family.  Sitting by the wave pool while the kids and wife (who threw caution to the wind and didn't care what she looked like in her bathing suit) climbed thousands of stairs to ride water slide after water slide.  Hours of PT. Days and nights of frustration.  Far from picture-perfect.  But, filled with God's grace.

Now, I may have scarred my kids for life by running around with them while in a bathing suit or making them try to pose for pictures that one always ultimately photo-bombed.  But, we've all been reminded again that God's grace is overwhelmingly sufficient.  

No perfect summer.  No lavish trip.  Not enough time.  But, full of His generous mercy and amazing grace.

"There's no space that His love can't reach,

There's no place where we can't find peace, 

There no end to amazing grace."

-crowder

Thanks for being a life saver

A perk of working day shift in the NICU ten+ years ago was occasionally being greeted by the pharmaceutical reps providing formula for our patients.  One in particular would always greet you with a smile, hand you a lifesaver wint-o-green mint, and say, "thanks for being a life saver".  (That rep happened to be my uncle John, my dad's brother--he's an amazing man!)

We all picture true life savers---people who risk their own lives or use their knowledge and skill to help rescue others.  In a cape, scrubs, BDUs, bunker gear, or uniform, we all have a picture in our minds.  

What about those life savers that don't fit into those pictures?

I mean, really, lately some of the following things have saved my life...

Yes, flavored sparkling water, favorite movie lines, good coffee and scripture have saved me more than once these last few months.  And the friends that will meet for a quick breakfast or ask to take me to lunch.  That sweet conversation is priceless. And even short texts, just letting me know we aren't forgotten, seem to save me some days.   And the three kids at my house---sometimes pulling at my tiredness and patience, but always keeping me going in the end.  They are life savers.  

These are a few of the things that have saved (& continue to save) Chad's life...

That silver claw-looking thing was in the biggest vein in his body catching clots for a month while he was recently off of his normal blood thinner. I did not include the group of people who helped him the night I got a call from the hospital saying "Mrs. Berg, we had to call a rapid response team on your husband...needs intervention...(insert Charlie Brown teacher voice here)...he's okay now but..."

He continues to have good days, followed by not-so-good.  He's finally beginning to be able to start PT in the simplest of forms, which is great although he still has a long way to go.  And I can't help but tell you that all of this has stirred up all of his autoimmune responses/diseases.  

Thankful for all of those "life savers" that are a part of his care.

Most importantly, this is our one true life saver.  Trust me. And know why.  

Never alone

Update, if interested.

Chad remains in the hospital.  He has had a rough couple of weeks.  He is showing some improvement today.  The doctor even said the "H" word as a possibility this weekend. 

A short synopsis, as there have been some questions as how we got here:

It has been two weeks since Chad's initial day surgery on his R knee. 

The Monday after the first surgery an unknown event occurred and he bled into the joint, filling the knee capsule with blood, which formed huge clots(think raspberry jam).  Since he is on angicoagulants he bled a lot.  This caused excrutiating pain as he continued to bleed, but the blood had no where to go.

Tuesday night/Wednesday morning he was admitted to the hospital for pain management and orthopedic observation.  

Friday he had a venous filter  placed and then had surgery to remove the clots and blood in his knee.  

He developed more complications throughout Memorial Day weekend and early this week.  

Wednesday day and night were very rough.  

Yesterday and today he has shown improvement and pain has been less. 

Thank you for continued prayers and offers of help with the kids.  They are resilient, great kids.  If you find them on your doorstep, though, please take them in for awhile.  :)

Since Chad has dealt with chronic illness over the last 11 years he has never stayed in the hospital this long. We know we aren't ever forgotten or alone, and are held in mighty hands.
Never alone...listen.