Monday, August 24, 2015

Broken Hallelujahs

What is written in the following paragraphs will be a mulling over of my heart.  This very public forum for my very private thoughts may not make much sense to someone else, but may be more of an exercise of my inner contemplation. You have been warned.

The weather is so fresh and cool here for this time of year.  I guess it is going to be September in a week but that seems so crazy.  Last night and tonight I went out and took a walk--not very far and certainly not enough to make a difference in my health.  But it felt so good to be outside and to be silent while my mind tries to sort out so much brokenness from the past many months.

Many times I have bragged to people how I cannot see even one of my neighbors' houses from my house.  I certainly do like that about living where we live in the countryside of hilly eastern Kansas.  During the past several months though it has felt somewhat lonely, not so much in my neighborhood, but in my soul.  I'm not really sure any human could stand to deal with all of the thoughts, concerns and flaws that are warring in my brain most days.  So I take them to Jesus often.  Other times I eat my cares in the form of a favorite food.  I know.  It feels like the worst kind of sin because there is no way to hide it. On other days, I hide myself in front of the computer and just try to read my way through not dealing with all that is in my heart and mind.

Right now I think I can almost empathize with parents who have lost their child or other loved one to death.  That seems very bold to declare and if I am way off base please call me on it.  We've been through such a long and weary road of difficulty.  I'm sure that most people think we are near the end of our trevail and they have gotten busy with their lives as they should.

School has started.  Summer activities are put aside for the more serious business of work, studying and family life.

Everyday I get up and am reminded that my 27 year old son is living in my dining room. We still do all the pill taking and wound dressing and drain flushing.  A nurse still comes by a couple times a week to draw blood.  Strangers still come in and out of my house to do physical therapy and occupational therapy.  We will be making our third trip, in as many weeks as we have been home, back to see doctors in that place where so many unhappy memories lie.

It is lonely.

And it makes me think of a friend who lost her husband not quite 2 months ago. Or the sweet family who lost their precious toddler boy just a couple weeks ago.  Not to mention my neighbor whose husband died suddenly soon after they moved into their home just up the hill from me years ago.

I think, 'What can I do for them?'  I can barely haul my tired self into bed each night".

But here is what I can do.  When I see them I can ask them to tell me what they miss most about their loved one.  I can remember that the person that is missing from their lives lived and loved them and that I haven't forgotten that it has left a huge hole in their lives.  Because if you feel like everyone else has moved on and you are still in that place of heartbreak and exhaustion it is so lonely.

Maybe that is the very lesson I needed to learn in all of this.

My heart aches for my son.  He longs to be back at work, go out to eat, even just to go anywhere besides the hospital.  To see people other than doctors, therapists or nurses and especially his parents! And most of all, I want him to be missed by others.  That sounds so needy.  But I know that is what people who have lost loved ones want as well.  To know that their family member is missed and remembered.

This is just one of the many thoughts jumbling around in my heart and my brain these days.

  I heard a song Sunday morning on the way to church called Broken Hallelujahs.  It ministered to me because I want so much to praise God through everything but I struggle.  I've had the sacred privilege of leading worship with our church's band for some years now.  When I sit at that keyboard and sing with the congregation I long for them and for me to meet God somehow in the music, the quiet, or the message of the morning's service.

But I realize that many of us there, perhaps most of us are like one-winged birds who are longing to fly into the heart of God in worship.  Some weeks all we can offer Him are broken hallelujahs.

That's where I am in my life right now.  Aside from the trials of Adam's illness I have other things going on in my life, too. They are all my broken hallelujahs.

I'm thankful that whatever I offer to God--He can make into something I could never dream about. I guess I'll go to bed and try to let Him sort it out.

Psalm 139:1-18, 23,24
O LORD, you have examined my heart and know everything about me. 
You know when I sit down or stand up. You know my every thought when far away.

You chart the path ahead of me and tell me where to stop and rest.
Every moment you know where I am. 
You know what I am going to say even before I say it, LORD.

You both precede and follow me. You place your hand of blessing on my head.
Such knowledge is too wonderful for me, too great for me to know!

I can never escape your spirit! I can never get away from your presence!

If I go up to heaven, you are there; if I go down to the place of the dead, you are there.

If I ride the wings of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me.

I could ask the darkness to hide me and the light around me to become night--but even in darkness I cannot hide from you.
Darkness and light are both alike to you.

You made all the delicate, inner parts of my body and knit me together in my mother's womb.
Thank you for making me so wonderfully complex!

Your workmanship is marvelous--and how well I know it.

You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb.

You saw me before I was born.

Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.

How precious are your thoughts about me, O God!
They are innumerable!
I can't even count them; they outnumber the grains of sand!

And when I wake in the morning, you are still with me!

Search me, O God, and know my heart; test me and know my thoughts.
Point out anything in me that offends you, and lead me along the path of everlasting life.


Thursday, August 20, 2015

Unexpected Mercies

Yesterday was a HUGE day for countless reasons.

Tuesday evening Adam and I headed out for the big city in order to be able to get up extremely early and be at the hospital by 7 a.m. on Wednesday.  

We arrived at the admissions office a little early and got checked in fairly soon.  They sent us to the wrong clinic first so once we filled out a little paper work for that one we headed up to IR.  I'm not sure if it is a good or bad feeling when the nurse who comes to the waiting room for you knows you by first name and your son acknowledges him by name as well.  Actually, it was kind of comforting to me to know that all of the staff in IR know him well and care about him in a sense.

The nurse who was checking us in yesterday was the same nurse that Adam had in IR the very first time we ever went down there with him to get work done while he was hospitalized.  Who could forget her?  She is a soft spoken, kind person who treats you so professionally as well as with loving care.  

We jumped right in to the plan of the day for their particular procedures and we began the litany of staff telling us what orders they had and the two of us responding with what we were told we were going to have done.   Those two scenarios don't always match.  It didn't seem as though the drains would all be coming out according to her account and that caused some consternation in both of us.

An IV team person was brought in to start his IV and let's just say it didn't go well.  It has been terribly hard for nurses to get a needle in Adam's veins since coming home.  His veins are tough from months of medications and his body is so depleted of nutrition that it is just extremely hard to get a good stick.  The team member decided to give him a break and left the room.  

In the meantime, a resident doctor from GI kept coming in (at least 3 times) and asked us to give consent to them doing an ERCP when it came time for us to go down to the endoscopy clinic.  Each time he came in and asked us for consent we both said NO.  You see, the ERCP procedure is the very one that gave Adam pancreatitis in the first place so we were prepared to say no to that no matter what.  Plus, at one point in his hospitalization I remember a conversation with a nurse who had told me "oh, he will never have one of those again."  

Well,  both Dr. G and Dr. O came down eventually and explained to us that the procedure would be called an ERC and that it would somehow be different which I will not go into here.  So with trepidation and my heart begging God to please help us, we had him sign the consent.  He had to do it prior to his other procedures as he would be heavily sedated and after that he would not legally be able to consent.

Another IV team member came in and put an IV in while nurse R finished telling Adam what drugs he could expect during the procedure and when.  At one point, Adam and I had had some "words" with each other and with the difficulty of the IV going in and watching him suffer I was crying a bit.  At that point God really stepped in for me.  

We were about to send him back and R had said she would personally go into the procedure with Adam and take care of his medications as he needed them best even though she was not really scheduled to do that.  At that point she asked us softly, "Would you be okay if I said a prayer for you?"  OH. MY. YES

I had wanted to pray for him before he went back but my emotions were already frazzled and I didn't feel I could do it on my own.  God stepped in and used R to give both Adam and I comfort and to ask Jesus to be with us.

And off he went.

During that procedure they took out the very uncomfortable final back drain, repositioned the two front ones and took out the biliary drain leaving a wire for the GI docs to work with later.  They also did a thoracentesis which is putting a needle through his back and into his right lung to draw out fluid.  They removed 2 liters from his right lung.

Before he was fully awake and around noon (which was our appointed time for his ERC) the nurse from endoscopy came down and transported him up to their clinic.  Of course before this happened they had already done two chest X rays in his bed to see if the thoracentesis was successful.

After consultation with the nurse anesthestist and the anestheisiologist he was taken back for his second round of procedures around 12:30.  

I got a snack and went outside to sit for a while and walked around a bit while I waited.  My dear, lifelong friend Sheila was texting me throughout the day and made it so much better than being "alone".  I finally decided to go back to the waiting area and sat in there for a while more.  It took about 2 hours and all of a sudden I heard a page that said "Dr. XXXXXXX XXXXXX please call #### STAT."  Then it was repeated. 

My heart dropped.  Was there something going wrong?  Why would Dr. O page him during the procedure.  I threw God some desperate prayers.  Then before I knew it, Dr. G came bounding into the waiting area and said that they were not going to put a stent in after all because it wasn't needed, etc. and then off he went.  (That is how he always operates.)

Then a couple minutes later, Dr. O was standing next to me and asked me to come out into the hallway to talk with him.  I was a bit worried but figured he was going to tell me they were done in private.  Then he told me the most amazing thing.  He said, "We went to put in a stent into the bile duct but when we looked in there, the duct was already the right size. In fact it is bigger than if I had put a stent into it.  I can't explain it.  The stricture has disappeared.  I don't know what happened.  I don't know what made that happen." 

 I said, "Maybe it was God."   

He said, "Maybe. I just don't know how to explain it.  And I don't think he will get pancreatitis."  I assured him that I didn't think so either even though deep inside I was really hoping and praying that we were both right.

After a bit more of a wait they came and got me and I waited with Adam back in recovery for a couple more hours until he felt he could travel.  

We stopped on the way home and he got a crispy chicken sandwich from Arby's and ate it all happily with no bad results.  Praise Jesus!!!!

South of Sabetha we met Craig in a parking lot and Adam got in with him and headed home while I went on to worship band practice.  When I got home late I got Adam's wounds all redressed where he needed it, flushed his drains and got him set to sleep and went to bed myself well after midnight.  

It was a day of many things, but for me there were several unexpected mercies, not the least of which was the miracle of my son not needing a stent and therefore probably not needing any surgery when in the past months things were certainly more bleak looking in regard to his health.

Thank you, Jesus, for your daily unexpected mercies!  They are new every morning!


Thank you, Friends, for your faithful prayers!  We love you!


Friday, August 14, 2015

Just So Thankful

Wednesday mid-afternoon we got a call from the liver transplant nurse at KU saying that Adam needed to go down the next day and see his doctor because some of his liver numbers were up and wonky.  Stressed?  YES!  

Our regular appointment that had been set up when we left the hospital was for this coming Monday.  "Why can't we just wait until Monday?" I asked.   They said they needed to see what was going on right away.  Disappointed?  YES!

Craig took him down since I had an appointment elsewhere and they left yesterday morning after we did flushes and dressings.  I truly felt that it was not going to be the emergent worry that it seemed they were making it out to be, but we wondered nevertheless. 

He had a CT scheduled and they said they would set him up in IR after 5 p.m. if that was a necessary procedure.   The day loomed long thinking in those terms.

Around 3:15 I got word from my guys that they were leaving the hospital and that everything was GOOD!  More than good, actually.  

The doctor said the CT showed that all of the collection areas of infection had collapsed and were NO MORE!!!  Remember "don't stop on 6"?  Well, those walls have come tumbling down!!!!!

On top of that, he said that it was a miracle that Adam didn't get some other condition which I can't recall the name of now.  But for THAT doctor to call something a miracle is, well, kind of a miracle!  He then went on to say that NEXT WEEK Adam will get all of his drains removed (unless one needs to stay--we'll pray) and they will put a stent into his bile duct and fix that for good.  The numbers being wonky was merely an immunosuppresant drug adjustment that we are fixing with a simple change of dosage.

I cannot describe to you the feeling of knowing that we will be done with this in one week.  It is like tons of weight off of our shoulders.  

God is so good.  He would still be good if none of this was happening, but He is so, so good for bringing us to where we are today.  

I cannot say enough thanks to all of you who are continuing to pray for Adam and for us.  This is still a journey we are on for a time as he strives to gain weight and strength to be able to go back to work.  We are so thankful to God and to God's people who are praying for us!!!!!!

The procedure to do all of these things will take place next Wednesday and they said it will be  a 3-4 hour surgery.  Please uphold us and carry us to Jesus once again.

Praise be to God for His wonderful mercy!


Wednesday, August 5, 2015

You Cannot Weary My Love

That was the title of today's reading in Come Away, My Beloved by Frances J. Roberts.  It speaks to me in my brokenness.  It reaches down to me in MY weariness.  

This morning I needed to go down to the basement to get a new gallon of milk from our fridge down there.  In order to get down there I had to go through this doorway which has had a zippered plastic "door" on it since they started to work on the mold issue down there. (Sorry the picture is sideways, I don't have time to figure out how to flip it right now.)  





On my way up the stairs the phone rang and I panicked because it is a delicate operation for me to get through that zippered door without something in my hands and the phone ringing.  I pictured myself falling backwards down the stairs and then the phone stopped ringing.  Phew!

Here are a few pictures of my once beautiful basement family room, our son's bedroom and our bathroom down there.
Lovely, yes?

Zach's closet

Zach's bedroom wall


The bedroom barely resembles a bedroom now. 




The bathroom is completely gutted.




And the wall with all of my family's pictures and the words Family, Friends, Dream, Bless, etc. looks like this now:







As I stated before, it makes ME feel like a mess.  

Things with Adam are going pretty well.  He's eating good food, sleeping well and tolerating being up much more than he did in the hospital.   For this we are very thankful. His care takes up a large part of the morning and late evening but it is manageable so far.

But it is easy for me to take all of this stress inside of me and it exhausts me.  Yesterday I had to drive back down to KC to take Anna to her annual hearing aid check up  which I had been putting off for months.  We had to get up VERY early and just driving that same roadway made me feel a little stressed.  

This morning both my devotionals were about resting in Jesus for my true peace.  

From Jesus Calling by Sarah Young:

Sit quietly in Gods' Presence while He blesses you.

Rest in God's sufficiency, as you consider the challenges this day presents.

 Do not wear yourself out by worrying about whether you can cope with the pressures.

Keep looking to Jesus and communicating with Him, as you walk through this day together.

(change of pronouns to names mine)


And then from Come Away, My Beloved by Frances J. Roberts:

My little children, you  cannot weary My love. You may grieve My heart, but My love is changeless, infinite.

While you have busied yourselves with your daily occupations, I have still been occupied with you.  

When your mind has been captured by the affairs of life, My thoughts have been of you.

(from page 63)


I cannot weary God's love for me!!!  I would say the same to my children.  During this hectic time in our lives as I'm pulled from one thing to the next, my love for them does not weary.  My body does, but my love does not.  So I can understand what God might be saying to me.

Here are the verses from God's actual Word about what He is speaking to me today:

Psalm 37:7A
Be still in the presence of the LORD, and wait patiently for him to act.

Romans 8:16, 17
For his Holy Spirit speaks to us deep in our hearts and tells us that we are God's children. And since we are his children, we will share his treasures--for everything God gives to his Son, Christ, is ours, too. But if we are to share his glory, we must also share his suffering.

1 Peter 2:9
But you are not like that, for you are a chosen people. You are a kingdom of priests, God's holy nation, his very own possession. This is so you can show others the goodness of God, for he called you out of the darkness into his wonderful light.


I've been struggling to serve my family with JOY and PATIENCE.  I'm tired.  Really, really tired.  But my heart wants to show my family and my friends God's goodness and His light.  God's Word is keeping me in check but I don't always act out the things He is teaching me.  

My dear family, you cannot weary my love for you.   I am so thankful for a God who says that to me.  He alone has perfect love.  

Thank you, Jesus!

Saturday, August 1, 2015

Home Sweet Home Can = Struggles

We are home!!

We're all happy to be in our own home.  But it is HARD.

Transitioning from our life in the hospital is going to be tough.  We all want to get back to our own normal lives and that is not going to happen very quickly.  And it has been a long road.  We still need your prayers.  So many emotions and many pent up feelings.  We're REAL people.

Last night I was thinking of all the things that I am appreciating about being home.  Here are some things:

  1. Unpacking  completely and not just living out of my bags while I'm here a couple days.
  2.        My own bed!
  3.        Soft toilet paper and Kleenex!!!
  4.        Being able to do laundry in my own normal routine.
  5.        Home cooked food.
  6.        Going outside and enjoying my yard.
  7.        Being in the country.
  8.        No murders happening as close as my own driveway.
  9.        Peaceful quietness.
  10.        Taking a shower and actually feeling clean.
  11.        Wearing whatever clothes are comfortable.
  12.        Not wearing make up if I don't want to.
  13.        Listening to my music as loud as I want to.
  14.        Washing dishes.
  15.        Bacon!
  16.        Going barefoot.
  17.        No doctors!!!!
  18.        Birds singing.
  19.        Seeing butterflies.
  20.        Eating tomatoes from our garden.
  21.        Seeing my other children outside of the hospital.
  22.        Having my son home and doing better!!!!!!


Monday, July 27, 2015

Whew!

5 months of pain, fear, questioning, praying and more praying.  

Now, suddenly, they are telling us that Adam will probably come home on Thursday and I don't know where to begin.  So I'm wasting time writing a blog post!

Last week they took Adam off each of his four antibiotics one at a time for 24 hours until he was off of them all and his white count was NORMAL!!!  Praise God!

Over the weekend they started him taking all of his meds by mouth instead of through his feeding tube and he has been eating a little more each day, though not huge amounts.

Yesterday they did another CT scan and today said that they can remove 2 more drains and his feeding tube.  That procedure will be done tomorrow morning and we ask that you pray for him during that time.  That leaves only 3 drains and his biliary tube. WOW!

I almost don't know how to react to all of this and I'm pretty sure he doesn't either.  For months time has dragged on while we prayed and hoped for recovery and now it seems like BANG they will be sending him home.  

There are not enough words to say thank you to all of you who have been and will continue to lift us up in prayer.  We need them greatly!  

I will try to update everyone here from time to time on his progress but I will happily go back to blogging about recipes and crafts and other mundane stuff.  

God has taught me SO many things during this time of suffering in our family.  Thank you for going along on the ride with us and being our friends!!!


Saturday, July 25, 2015

God's Goodness

Today I want to praise God for His goodness, even though I'm not sure how to do it.

There are many ways I know that God is good. Here are just a few reasons:


  1. I know His character and He can be nothing but good.
  2. His Word tells me of His goodness.
  3. I've experienced it millions of times in my own life.
And God HAS been so good to us this week even amidst some rocky times.  But since I have to be real and honest here because so many people are watching us go through this, I have to say that right now it is HARD to experience His goodness in our lives.  That may not make sense to you if you have not gone through a really tough time in your life, but I'm pretty sure everyone has so maybe you can understand a little what I'm saying.

For one thing, when you are going through a really tough time you kind of get used to riding that "wave" of bad stuff.  You have to or you will fall apart in the midst of it.  Some of you have been riding that wave like we have for many months or even years.  Others are just getting in the ocean and see that wave coming.  

This week we had some tough times emotionally and some really good things happening all at the same time. Maybe it is just me, but my heart sometimes tries to toughen up when we start experiencing good things because I'm afraid it won't last and I will have to be strong for the tough waves to follow.   My humanness is showing.

When I read my devotionals today they were both reminding me that God is good.  Even the most specific things it mentioned were things that I am thankful for while being home.  

From Jesus Calling by Sarah Young, 

You can find God not only in beauty and birdcalls, but also in tragedy and faces filled with grief. Jesus can take the deepest sorrow and weave it into a pattern for good.  (change of pronouns to names mine)

Of course one of the verses to read with that was Romans 8:28 NLT

And we know that God causes everything to work together for THE good of those who love God and are called according to his purpose for them. 
(capitalization mine)

It wasn't until I was an adult that I took note of  the important syntax of the word THE in that verse. It does NOT say that everything will work out good. (Besides, if that was the case it would have to work out well)  It says it will work out for THE good of the person who loves God and is living as His disciple.   I think I've talked before here about how what God sees as our good and what we think is our good may be two different things.  It is all about us getting to know HIM better and becoming more like HIM.

The other passage I read was from Come Away My Beloved by Frances J. Roberts.  From the reading A Perpetual Fountain of Glory on pages 48 and 49. Here is an excerpt:

But look to Me, and I will be your beacon in the night, and you will not stumble over the hidden things. You will walk in a way of victory though turmoil is on either hand, even as Israel marched through the Red Sea on a path My hand hewed out for them. Yes, it shall be a path of deliverance, and My Spirit shall go with you, and you shall carry the glad tiding of deliverance to people that sit in darkness and captivity.

Tarry not for a convenient time. The movings of the Spirit are never convenient to the interests of the flesh, and I shall engineer your circumstances to conform to My plan and My will. You will glorify Me; for My plan for you excels all other ways, and in the center of My will is a perpetual fountain of glory.

Do not doubt or hesitate, for I the Lord your God go before you. You already have My promise that the work I begin I am able to carry through to completion.

Yes, there is already laid up an exceeding weight of glory for those who go through with Me and determine to seize the prize. For I have wealth beyond your fondest dreams to bestow upon those who have left all to follow Me. All the glittering enticements of this transient life are as chaff in comparison, for God's gifts and calling never waver, and My giving is restricted only by the will and choice of the recipient.
__________
Lord, Jesus, , I cast myself at Your feet. Let me bathe them in tears, for my feet have been like lead. they have been weighed down with the cares of this life. I have been like one in a dream who seeks to run and is held paralyzed.
Set me free, Omnipotent Lord, and make me Your glad and willing bond slave. Free my feet and make them swift to do Your bidding. Loose my tongue to shout Your praise. Free my heart to love the lost with the great deep compassion of Jesus Christ. Free my affections and nail them to Your cross! Amen

Now, I realize that these are not Scriptures.  These are not really direct words from God to me and we need to be careful not to believe that words written by mere men ARE Scripture.  But the imagery in them speaks to me this week, even this day. 

Almost every dream I ever have has me frozen in my steps from being able to do the thing I wish to do in the dream.  I feel paralyzed just like the prayer at the end of the passage says.  That is sort of how I feel this week.  I want to praise God for the goodness of what He is doing in our hearts and in Adam's health but my fear of believing it to be permanent paralyzes me.  

Please pray with me that God would loose my tongue to shout His praise along with all of the other actions that the above prayer cries out to God to perform.