Come, Ye Thankful People, Come!

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

I’ll never forget hearing these words sung by a room full of grandparents.  A few years ago when I was teaching at Sonlight school we had a ‘Grandparents’ day and invited all the grandparents of the students to come and spend the day with us at school.  After lunch, and a few stories from the grandparents, we asked them to sing a song for us and they chose this hymn.  I distinctly remember the goose bumps running up my arm as I realized the lives that must have walked behind the boldness of their voices as they sang this hymn.  “Great is Thy faithfulness…Thou changest not… as Thou hast been, Thou forever will be… Strength for today and bright hope for tomorrow…” 

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After writing my last post I told Ian a day later that I was ready to post something else for people to read.  I wasn’t sure I wanted to accept the reality of everyone knowing how I really feel at times.  So why not post something more cheerful?

The reality is, I still feel that way.  I still feel lost.

People ask Ian, “How are you doing?”  And he replies, “I’m doing ok.  I’m glad to be here.” 

And I want to shout to the heavens, “My Ian’s not ok!” 

I want to howl at the moon, “He’s not doing well!  We don’t know what is going on!  We do have problems!”

Instead I mostly just say, “He’s not well, but he’s doing ok.” 

I wish I could say other things.  I wish I could smile when I talk about our lives instead of turning my head and biting my lip to keep from crying.  I wish my nose didn’t run so much when I cried.  At least then I’d look more dignified. I realize I don’t know what it means to be faithful.  I don’t know what it means to go on.  I don’t know what it means to find hope in God.  I don’t know what it means to live in grace.  But I long to know.  I long for my heart to be changed.  Like one of my friends put it so beautifully, “My heart aches, and my tears flow… and I long for heaven.”

Together, Ian and I are facing daily challenges, and we are learning.  Someday in heaven we’ll know what it truly means to receive and live in grace.  We’ll know what it truly means to believe and trust.  In the mean time we’ll try, we’ll struggle and we’ll choose God.

We were privileged to spend a few days in LA and MS with the Bennett side of the family over Thanksgiving.  I had a terrible head cold that had me in bed the Saturday before we left.  I don’t know when the last time was that I felt that sick.  Dear Emily, a church friend, came over and washed up my counter full of dishes and did our laundry and even ironed Ian’s everyday shirts.  He’s still looking sharp in them!  And then, she went back to her parent’s home where the Pifer family was having their Thanksgiving/Christmas get together and the ladies made up a freezer full to meals for us and delivered them!  Remind me again how to respond to such generosity?

It was a blessing to be able to sort of leave our troubles and worries behind while we travelled south.  I was rather surprised to realize after only a few days that I felt like I was truly able to live in the present and not worry about the future.  It was a good reminder to me that often I take God’s faithfulness as only something to be sung about and not lived in a commitment to trust.

And now we’re home.  We plan to go again to Mayo next week on Tuesday, to see if we can schedule an appointment for a muscle biopsy.  And God continues to shower us with blessings.  Our local church community has pulled together, for us, in so many little ways.  I know I’d have fallen apart a long time ago if it weren’t for their continued support, prayers, meals, love, blessing and encouragement.  Just this morning after church they surprised us with 26 packages, one for every letter of the alphabet for Ian to open over the next 26 days.  The other week when Ian was feeling especially low physically, and also in spirit, I came home from work to a rather large looking package in the mail from NC.  We opened it and together we cried and thanked God for what was inside.  Some of our dear friends from a church in NC that have been praying for us, put together a puzzle with encouraging scripture verses on each piece.  They also included a note with words of encouragement and what they’ve been praying for us.  Some of the people who sent notes we didn't even know.  Our hearts were blessed and I continue to look at it and am reminded to “Hope in God, for my expectation is from Him.”  Yet another church blessed us with a very large financial gift to help with general living expenses.  And did I mention all the gifts and packages that have come in the mail to us over the last months from family and friends and even those we don’t know?  We daily stand in awe of a God who knows how to give, “Every good and perfect gift.”

Though we are facing a difficult life journey, we are learning together what it means to find joy and to rejoice with a very deep, soul-joy during the especially low times.  So, while I may look like I have it all together at times, there are also moments where I do feel much like I’m falling apart, like I, or we, can’t go on into the future unless something changes.  

We’re learning to live in the presence of One Who

“Restores our soul, Who leads us in the path of righteousness, Who anoints our head with oil and Who truly causes our cup to run over with blessings.”

 (Psalm 23 paraphrased)

Confessions of a distraught wife…

I don’t do a good job of taking care of myself.

Ian is having a not-so-good day.

Sometimes I’m a work-a-holic.

My pile of mending is about to cascade off the sewing table onto the floor.

I didn’t clean our bathroom for over a month.

Baskets of clean, unfolded laundry sit around.  Most of the time.

I’m funny sometimes.  But normally I’m not.

I drink coffee every morning.  I didn’t used to.

Tonight I thought about running away.

Only thing… I would have to leave my heart behind.  It would hurt too much to take it with me.  Since being heartless isn’t an option.  I guess I’ll stay.

Shadrach bit me because he wasn’t excited about having Meshach and Abednego as friends.

Since I’ve moved to IA I’ve become a terrible driver.

Ian is often hungry and I usually don’t know what to feed him.

I bought another plant yesterday.

My refrigerator makes our food smell and taste funny.

I cry most days.  Every day.  Mostly.

I hurt when I see strength.  I cry when I see goodness.  I’m so mixed up and confused inside sometimes, mostly.

It’s the moments when hope is wiped away.  When I can’t see anything in the future.  It’s simply a void pulling me along.  Some days I hate time.  I hate the feeling of needing to do the never-ending list of, ‘have tos’, ‘should dos’ and ‘must dos’.  I hate the feeling of time slipping away.  And when I realize that Ian might get worse instead of better, I’m annoyed at myself for wasting these moments we do have together.  I’m annoyed at myself for crying.  I’m annoyed at myself for not treasuring life.

Sometimes I don’t know how I will go on.  Sometimes I don’t know how I will face the next few moments let alone tomorrow or in five years.  Sometimes I want to scream even though it would make my throat hurt and even though I don’t like screaming at all.

We talk those serious talks about the future.  We try to take into consideration all the options.  Even death.  And it all hurts too much.

I tell myself not to worry.  I tell Ian not to worry.  I say, “Stop worrying!”  I realize I am worrying.  What do I do?  What do I say?  What is worry?  How do I learn to quiet myself before God without a heart of worry?

I’ve fallen into a holding pattern that swings between, living as if Ian will someday change for the better, and the reality that not much has changed at all.

We spent a week a Mayo and then returned the following Tuesday for an MRI for Ian.  The doctor reported to us that the MRI showed nothing.  So far every single test Ian has gone through has come back normal except for the EMG.

EMG stands for Electromyography, a test that uses shocks and needles in the muscle to detect a problem with the nervous system or the muscles themselves.  Ian’s EMG did not find anything wrong with the nervous system but found some abnormalities in the muscles.  The EMG is not a diagnostic test but can only show that there is a problem.

We will go to Mayo for another appointment sometime within the next month for a muscle biopsy.  The doctor looked at us and said that there is, “Very, very little chance that we will find anything wrong, even with the muscle biopsy.”  We are going to go ahead with the biopsy.  Not as a last resort but as the next step.  We know that God is always the first and last resort and that is where we started and where we will end.  While we walked the halls of Mayo like hundreds and thousands before us with hopes of healing we also understood that there is only one true Physician and He can not only heal our illness and disease but He can heal our sin wracked lives with His precious blood.  And so while we are coming to the end of modern science’s understanding in this area, we know a God that created man and breathed life into him.  We are learning His faithfulness.

Thank you for your continued prayers, love and support for us.

Why do rabbits die?

It’s the Mayo Clinic haze.  It’s the first thing that hit me when I realized we were going and it remains hanging over our time as if I didn’t drink enough caffeine and I’m still trying to wake up.  Or maybe I hit my head on one of those marble pillars that support the elevator system between the Mayo and the Gonda building.  Sometimes my head throbs like I did.

Our first visit with Doctor Milone didn’t reveal much.  She sent Ian through the paces and gathered all the info from the previous tests that he has undergone.  She ordered more tests and a return visit on Friday.  The following days were a series of tests, not too intense, aside from the EMG on Thursday morning and a physical strength test on Friday that will have Ian wiped out for several days.

Ian’s sisters, Mary Heather and Rebecca came and spent almost the entire four days with us.  It was special to have them there.  They helped to cheer us on and cheer us up during the waiting times.

At one point I sat in the waiting room and looked over and saw another young couple sitting together.  He was the one there for an appointment and she sat next to him silently crying.  We didn’t get a chance to talk to them as we were called away to our appointment but it struck a cord in my heart.  So many, many, many ill people come and go through the halls of Mayo.  Each one is there seeking answers to some of life’s biggest questions.  Just like Ian’s little brother Clyde asked Ian last night.  “Ian, why do rabbits die?”  There is much in that simple question.  Hopes and dreams of today and tomorrow tied up and left to the inconsistencies of life.  And what is God saying in all of this?  I find the only place to rest is at the feet of the One who says, “I change not.”

Doctor Milone asked us if we wanted to go ahead and pursue a MRI and yet another muscle biopsy.  Why not?  Because it might reveal an incurable muscle disease.  So we ask, we wonder.  We hold tight to each other through the haze, and through the tears.  And like I read on the back of a pink sweatshirt that walked by, “Let us run with endurance the race that God has set before us.”

We’re home from Mayo for the weekend and we’ll head back up again on Tuesday.  Most likely for the rest of the week.

Not much

We left the house this morning around 9:15 and headed north towards Rochester MN.  God blessed us with safety travelling despite the fact that I felt sleepy most of the way.  We were also blessed with friends who offered their van so that we could bring all of our trappings along and Ian could also stretch out and find some level of comfort along the way.

The doctor saw us and after hearing our story, doing a physical, and looking through our stacks of paperwork, sent us home for the night.  In the morning we’re lined up to have yet another EMG, yeah, one of those, and then we’ll see the doctor again.  The Hoovers have been so sweet and made us feel comfortable in their home.  Ian is currently sacked out on their lounge chair, trying to relax a bit.

On other news, the test results came back from the blood work that was sent to Boston the beginning of October.  They came back negative for myotonic dystrophy so we have yet one more thing we can check off the ‘negative’ list.

And off to Mayo we go

Wednesday I found myself reading a text message from Ian, 

“Mayo appointment Oct 29 at 2:15… :)”  

 This is something we’d been hoping and praying for now for quite some time.  I was both excited as well as scared.  The doctors at Iowa City are struggling to know what Ian’s illness is called. We thought it was mitochondrial myopathy but then they decided that the muscle biopsy was not definitive enough for this type of diagnosis.  Another test they took was for myotonic dystrophy.  The results won’t be back for a while they said.

In the mean time, after waiting sometimes for weeks to hear from the doctors to know what to do next, we were encouraged to look into possibly going to Mayo.  There is a Mayo Clinic in Rochester MN about four hours from our house.  The doctor at Iowa City was willing to refer us.  They set up an appointment for December the 12th and said we could call twice a week between now and then to see if there were any cancellations.  The first time Ian called they told us they had an opening for the very next week.  They told us to plan to be there for five to seven business days.  I’m not quite sure what to expect since every other doctor visit we’ve been to in the past has always resulted in them not being able to find anything.  Maybe we’ll still be there next year? Maybe we should look for a house near by to live in?  Maybe rent is cheaper in Rochester?  I doubt it.  But sometimes I think about it.   

Once again I’m awed by the support coming from the Body of Christ.  Within just a few hours of finding out that we needed to go to Mayo, someone gifted us with a nights stay at a hotel and through several other connections we now have a place to stay that is quite near the Clinic.  We feel blessed by such generosity and we continue to feel God’s presence very close despite living in our broken world.

Thank you for your continued love, support and prayers.  Next week looks overwhelming to me but I know that with God's grace, we'll find His face in the midst of the week of challenges.

“Excuse me Ma’am, could I see your license…”

It was so nice to have my friend Kaylan here for a visit a few weeks back.  She, like so many others have been good about coming to visit us when we don’t have the option to travel as much as we wish we could. 

We were standing in the kitchen at work.  I was slicing fruit for the day.  Our conversation was all about her life and my life and family and friends we know.  I told Kaylan that even though life has been rough, God has been very present in our struggle.  As I cut the cantalope in half and cleaned out the seeds with a spoon Kaylan asked me, “How?  Do you have an example?”

I sliced the melon in quarters and found myself tearing up. 

“Yeah, the other day it was early in the morning.  I went and picked up Orlando, (the little boy that Ian babysits) and when I got home I was rushing around trying to get things lined up for Ian for the day.  He wasn’t feeling well at all so I dished up food onto plates for them and stored them in the fridge for lunch.  It was shaping in to a no good morning really fast.  Should I ask Dena to take care of Orlando?  (She’s been so good about helping us when we’ve needed it.)  Why do I have to rush off to work and leave my sick husband at home every day?  Why does my world look this way?  God didn’t create me to be living this life.  At least not in His perfect plan.

Just before I left for work for the day I sat in the drive and sent a text to several friends asking them to pray for me just to survive the day.  I’d been crying all morning and life felt like more than I could take.  When was my heart going to physically break in half from the pain?  I was just imagining trying to make food for people’s lunches with tears dripping into the soup and all over the sandwiches.  Not great.  But that’s how I felt.

As I left the drive, I glanced down at the clock and realized I was going to be just a bit late for work, if I didn’t hurry.  More thoughts coursed through my head as I drove and I wasn’t paying much attention to anything.

What does it mean to live in this state of brokenness?  What is God trying to teach us on a day-by-day basis?  How can I try harder to pursue God’s heart in knowing how to live?  Even for this moment?

 The pile of tissues grew on the seat next to me. 

And really, what do we do next?  Where do we go?  Who do we talk to?  How many more doctor’s visits should we seek out?  When God looks at my heart, what does He see?  Does He see a heart that is desperate only for physical healing for Ian?  Or can I hold my desires with an open hand realizing that clutching them tightly to myself will do no good anyway?

Just then I looked up in my rear view mirror and saw a white car pull around the vehicle following me and swing in behind me.  I put on the brakes right away.  I knew immediately it was a policeman.  Even more than that I knew that I’d let the way I was feeling take over my ability to drive wisely.  I’ve been pulled over before and I know that feeling of blood pounding in my ears, the sting of knowing I deserved what was coming, or in some cases wondering why I’d been stopped but being pretty sure I was at fault.  The rush of adrenaline that goes with it all.  Surprisingly as the police officer walked up to my window I felt none of that.  Just an odd feeling of calmness that didn’t seem to match with anything I’d been going through.

I don’t know what the police officer saw when he looked in my window.  I’d composed myself well enough that there were no tears running down my face and I was searching in my wallet for my license.  The $100 or so I was about to pay to the Dallas County coiffeurs for driving over 55mph, didn’t seem to matter for some reason.  Maybe the weight of perspective was still vivid enough in my mind to keep me composed.

Even as I told Kaylan the story tears ran down my face.  God was so real in that moment it almost took my breath away.  I don’t know if that officer ever realized that I thought he was an angel.  Maybe he was and maybe he knew it but he felt to me like one of those pink slips from heaven that we so often want God to send us.  I deserved a fine.  I needed to be reminded to drive safely and cautiously.  All of this I knew.

“Well ma’am I’m just here to give you a verbal warning…” I could hardly believe my ears.

Why the officer decided I only needed a warning?  I have no idea but to me he was a very tangible picture of God reaching down into my life at that moment.  “Ruth, let Me show you ME, right now.  In the midst of what feels like a difficult morning, in the midst of your pain, in the midst of your questions, let Me stop you.  Let Me literally pull you over, and show you mercy.”

My heart stands in awe of a God who takes such a personal interest in my life and a God who holds true to His promises.

“Surely goodness and mercy shall follow me all the days of my life…”   -Psalm 23

Grace like rain...

 I’m not quite sure where to start this post, or how to finish.  The only problem with letting too much time slip by between posts is that so much accumulates to write about that when I finally find time to write, it all jams up in my head and pours out in uncomfortable ways like our backed-up drain system has been doing recently.  Soon I find myself with a wet basement, piles of dirty laundry and I’m dumping my dishwater on the wilting morning glories that still refuse to bloom.  See!  I told you it gets confusing!

As many doctor’s appointments as we’ve been to in the last several months it’d be nice to say that we know what is going on with Ian’s illness.  It’d be nice to say that we know what we’re facing.  It’d be nice to at least say we have a diagnosis.  The only thing I can truly say is that we’re still experiencing God’s grace in our lives, and this is beautiful.

If God gives me more years of life to live, I pray that when I look back on our first year of marriage, I will remember grace.

My sister Martha was here the beginning of August for a short visit and I asked her to create a painting for me.  I had an idea in my mind for a while and I wanted to see if Martha could create it with paint for me.  Of course she did ‘cause she’s good like that!

This painting represents much of what I feel every day.  When I look at life it seems like dark, black clouds are hanging over us drenching us with rain.  My heart wants to run.  It wants to hide.  It wants safety.  It wants light and not darkness.  It wants life and the ability to breathe.  But instead, God is helping my heart to find beauty in the clouds and even in the storm.  When the thunders of the unknown boom, I am learning the boldness of trust.  When the lightning snaps its surprise I am learning the patience of taking each surprise with hope.  And the rain, oh the rain.  I’m learning that so much of it is in my perspective.  I can reach my hand out and say it stings, I’ll be drenched, it pounds and it pours!  Or, I can look at each precious drop as a gift from God.  I see the softening effect it has on my hard heart.  I see the growth that it brings.  I see the grace that is in each and every one of those little drops.

Early in the spring when I was starting to garden I was thinking about how we often use hard and tough tools to break up ground for planting.  It was fascinating to see that God used rain with the same effect.  Gentle rain brings softness.  I remember specifically asking God, over that time, that I would be able to respond to His grace, and the words from a song, “O for grace our hearts to soften.”  And now, today, I live that prayer fulfilled, moment by moment.

Seeing grace and accepting it can be as difficult as extending grace to someone that has wronged me.  Grace comes in so many forms sometimes I don’t even know what it is and I call it pain and despair.  I daily find though, that grace, is using the pain and despair to turn my heart to a God who holds my wound with a tender hand, a God who faithfully keeps His promises by building hope and a God who knows just what I need.

The last months have brought much change in our lives, and yet, no change at all.  We’ve been to the doctor numerous times.  We were given a diagnosis: A very mild form of Mitochondrial Myopathy.  Now the doctors are saying they aren’t so sure about this diagnosis and maybe it is something else.  More testing, more waiting and many days of not knowing.  A few weeks back Ian was feeling stronger than he had been for months.  He was walking around the house quite often without using his cane.  He had energy to babysit three children for several days in a row.  But then three weeks later he experienced some very low days where he felt so weak it was hard to even shake hands to greet people.  We wake up every morning unsure of what the day will hold.

But this we know, God is faithful.  Whenever my heart wants to doubt, or be afraid, I only have to remember a few years back, a few weeks, a few days, only a few moments ago to remind myself of His declared faithfulness.  I have nothing profound or clever to say, in fact, I’m still learning the definition of faithfulness but I cannot turn a blind eye to what I see daily.  I see and experience friends who call to encourage me even when I don’t have the emotional energy to answer the phone.  I get my after-work boost by opening the mailbox to encouraging notes and letters from so many of you.  I see God providing for us financially through hundreds and thousands of dollars coming from our friends and even people who we hardly know.  I've learned to feel blessed, instead of overwhelmed, by an over productive garden that left jars of canned goods and a freezer full in it’s wake.  I have a stack of material given to me by the young ladies in our church that wanted to bless me with some new dresses.  I have boxes and boxes full of canned goods in my basement from our mothers and friends who put away tomato products, pickles, peaches and more for us.  Our church family continues to support us in big and little ways through meal invitations, and just little things throughout our week.  And many times I have seen and experienced God’s strength in Ian’s life when he’s been low and we’ve prayed specifically for extra strength.

Fascinatingly enough, I find the hardest moments in life are not necessarily the odd ones.  Like last week when Ian was at an eye appointment and found it more comfortable to rest on the floor instead of in the chair in the waiting room.  You could see the worry mounting on the face of the receptionist when I didn’t bat an eye at how he was acting.  It did feel a little odd with people coming and going and I’m sure thinking we looked a bit crazy, my husband stretched out head to toe on the floor with his eyes closed.  Moments like that aren’t as hard as other times.  Last evening we watched the video that one of our friends put together for us from our wedding.  It had all the happy moments and the sad goodbye looks and the experiences from our special day, but the thing that caught at my heart the most was how Ian could walk, and stand, and jump, and feel excited.  I could hardly take my eyes off of his simple movements.  Another thing that hurts is looking at friend’s family photos where the man is standing, or watching some of the young men in our church cross the room.  Simple, I know, but surprisingly difficult for my heart to accept.  God is teaching me to thank Him in those moments that these men have beautiful strength from Him.  I praise God that Ian does have the amount of strength that he's been given.  And I learn most importantly not to not worry about our future.

 Thank you to so many of you who have let us know that you are following our story and are praying for us.  We daily feel and experience your support.

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Grace like rain by Martha Strickler