Old Fashioned Words

Due to the advent of the internet and just the world of visual images being a continual presence in our lives, more people have fallen in love with some of the old classic literature.  I know I have.  

Movies like Pride and Prejudice, Persuasion, Sense and Sensibility, Jane Eyre, and other similar titles have brought old literature alive for this generation of people who may have never read the books by the same name.  I love these movies and many more like them because they have wonderful stories which depict people from another epoch of time where manners and culture were much different from ours.  Even their language was much different from ours today. 

But there is more than one thing we can learn from enjoying these gems of yesteryear.

Today I was reading a devotional that used a word that I often hear in those favorite movies of mine:  constancy.

You don't hear that word much these days and I think it is a shame that we don't use it because maybe if we did there would be more of it.  Constancy I mean.

You see in those grand old stories that word was used to determine if someone was worthy of friendship, business, courtship or marriage.  It was a very important component to understanding if a person could be depended upon to ride out the storms of life's ups and downs.  

Imagine if our world used that as a measuring stick today.  Would our relationships in family, friends, work and marriage be better?  Not just because we used the word but if we truly lived it out.  

Sarah Young uses it in today's selection in her book Jesus Calling: "The human mind cannot comprehend God's constancy." (name mine)

Our world, our culture, has forgotten what benefits this quality calls into existence because we have become a society of inconstancy.  Nothing lasts anymore.  We throw away everything even if it is not disposable.  I know this because my generation throws away things that my parents' generation would have saved or fixed for decades.  I'm not saying that everything should be saved or fixed but the mindset of throwing things away is damaging to our hearts. Because of this mindset we throw away relationships just like we do old bread wrappers.

Hebrews 18:8b says:

"For God has said, 'I will never fail you. I will never forsake you'."

Going on to verses 8 and 9a:

"Jesus Christ is the same yesterday, today, and forever. so do not be attracted by strange, new ideas. Your spiritual strength comes from God's special favor" 

Jeremiah 31:3 says:

"I have loved you, my people, with an everlasting love. with unfailing love I have drawn you to myself."

Exodus 15:13:

"With unfailing love you will lead this people whom you have ransomed. You will guide them in your strength to the place where your holiness dwells."

Deuteronomy 33:26,27

"There is no one like the God of Israel. He rides across the heavens to help you, across the skies in majestic splendor. The eternal God is your refuge and his everlasting arms are under you."

Can you think of anyone in your life today who can do that?  Certainly we love our children and our spouses with fierce love but NO ONE can compare to Jesus when it comes to true constancy.  There are no other arms that are everlasting.  Eventually everyone we love will die or be incapable of holding us up. But not God.

Today I'm going to go through my day thinking about constancy and being thankful for all the old fashioned words that don't need to be considered old fashioned if we choose to live them.

It's Not Fair and Specific Prayer

Those words.  Every mother has heard them and said them herself as a child.  We've probably all said them as a adult as well.  It's not fair.

If I'm honest, I really don't recall my children saying those words very often if at all.  Maybe growing up in a house full of kids makes you realize that nothing is fair early in life so you know better than to say it.  Or maybe I've just blotted it out of my memory in favor of all the good things I remember from my kids' childhoods now that they are mostly all grown up.

As adults we become so jaded and have full knowledge that life truly is, not fair.

Last night Katrina and I left the hospital around 8:00 but we didn't stay in town.  We headed home so that we could have a full day here to catch up before Sunday and then going back on Monday.  

I cried all the way home.  

Adam had a really tough couple of days and nights these past several days.  It is torture for me as a mom to watch my child suffer in pain and discomfort on and on with seemingly no end in sight.  To have to hold your adult son as someone causes them horrific pain (and yet not really be able to hold him because of all the wires, tubes and dressings) is something I do not wish upon anyone.  But we are living it.  It's not fair.

My son cried out to me to please don't let them hurt him and to ask how can he take it any longer and my heart cries while my eyes stand strong in order to encourage him to hold on to hope.  It's not fair.

I long to have the worst thing in my life be a busy schedule or a lot of work to do.  I see pictures of people enjoying the things of summer and I want for that to be my son's face doing fun things instead of spending his days wondering if he can take the pain anymore.
It's not fair.


IT IS NOT FAIR THAT MY SON IS SICK AND SUFFERING.

But it is happening.  

This morning as I was looking for something for Jesus to speak to me I was reminded that we have had many answered prayers in this journey.  A friend sent me a prayer journal and it brought to mind that we have asked over these many months for friends to pray specifically for things and we have seen answers to those prayers that were so stunning and wonderful.  It is easy to forget those things when you are feeling stuck in the rut of pain and suffering.  

So it feels like God has prompted me to give you some very specific things to pray for in regards to Adam.  He is able.  He is powerful.  He is merciful. He is healer.

1. Please, please pray for them to find a way to get the infection out of him because the way they can do it is so SLOW.   Along with this, pray that the tubes could be made more efficient because they leak so badly and it is breaking down his skin. 
2. Pray for them to find the best, least hurtful way to dress his wounds around his drains so that they don't have to be changed so often. ( Pray request number 1 again)
3. Pray for him to be able to sleep and rest during the night.
4. Pray that he would be willing to go back to a different pain med that makes him less confused and anxious.
5. Pray for his heart, mind and spirit to be encouraged daily by Jesus.
6. Pray for complete healing in the areas that need it so that surgery can be done in due time and he could be on the recovery side of this illness.
7. For greater wisdom for Adam's doctors to know what is best and right for him and also that they would fully communicate with each other to be moving things along.

I cannot express enough thanks to you who are praying because I know there are virtually hundreds of people praying and that overwhelms my soul.

But we thank you.  Your love for us isn't fair, but we are so humbled by it and grateful for it.

Tough Day

Today was a long, tough day.

My mom and sister came yesterday from Illinois so we had decided to go over to the hospital a little later than I usually do.  Nothing was going to be happening this morning anyway. Or so we thought.

After the procedure yesterday, Dr. G said that he wanted to let Adam have a resting day where he was able to get his full nutrition so he cancelled the previously scheduled visit to IR.  But early this morning I got a text from Craig saying that though the orders for the IR had been cancelled it was not showing up on the computer that way. Besides, the doctor that was to perform the procedure would be here today but NOT tomorrow.  So it was a God arrangement.

When we arrived at the hospital Adam was still down in the IR so we waited for him to be returned. One of our friend nurses had a patient leaving today and offered the nicer corner room to Adam so after his return upstairs he was to be moved to a room with a much better view and more sunlight. When he was brought upstairs to his unit he was sound asleep and remained so while we were moving to the new room.  So when he woke up, he was in a different room.  He was a bit confused by that.

During a dressing change with his new nurse (because he changed rooms) some of the infected fluid in him just started to come out of him through his skin which was kind of a strange surprise.  They had to figure out a way to protect him from having that damage his skin and also contain the liquid without putting in another new drain.  The prospect of that was so discouraging to Adam.

They put out a call to the med team and the surgeon to see what they suggested to do with this problem and we saw the med team doc and eventually the surgeon.  This is the man we have been wanting to talk to for a while but he has been in surgery every day recently doing transplants. We finally got to have a good consult with him although what he told us wasn't exactly what we wanted to hear in terms of speed of recovery.

Dr. K feels very strongly that surgery at this point is still far too risky and does not recommend it to be done.  Going in and trying to "scoop out" the areas of infection sounds like a quick and easy plan for moving along the recovery process but it is not without chance of great risk of dangerous complications and even death.  Naturally we don't want to take these kinds of chances just to hurry things along so we agreed with him that we should prudently wait.  Seemingly not what we wanted but I have to confess that in my gut I have felt surgery was not a good idea yet for a while now. Two of Adam's other doctors whom I respect greatly have shared those feelings.  So as much as it would be great to have a shortcut to better health for our son,  it is not a safe path.

Through our talk with Dr. K he suggested that the nurse put an ostomy bag on the leak that had recently sprung and she did with great success.  One problem solved.

I need to say here, too, that the scope that they did yesterday showed that there were no holes in the area that they checked and things are healing in there.  That is good news and we are grateful for it.

But the reality that he will have to continue to wait and see how things work themselves out in the manner which they are now is very disheartening to Adam.  He feels like he will be here forever and that his life is horrible this way.  I don't blame him.  It is hard.  He suffers a lot of pain and having been dealing with this for 4 months as of today it is hard to imagine that he will ever get better since it is so slow and difficult.  Saturday night he had a couple blood clots in his leg.  It seems like there is something new all the time and yet we make minuscule steps forward.

Please pray for his mind, his spirits, and his heart to be able to work at the things he needs to do to slowly get better.  We appreciate your love and concern for us.  Life is hard, but God is good.

Tears and Fears

There have been quite a few tears and fears this week in our family.  

Monday morning when I got in to check on Adam and start one of his antibiotics I saw that a couple hours before, Craig had charted a temperature of 100 for him.  So, I took his temperature again and it was 101 degrees which is to be reported to the home health nurse and doctors at KU.  I didn't really want to make that call but I knew that I needed to do it. When HH contacted us back they said that we needed to get Adam to the ER at KU as soon as we could which meant that we needed an ambulance.  I'm pretty sure that was the first time in my life that I have actually called 911 myself.  

In literally just a few minutes the Axtell ambulance was in our driveway and things shifted into high gear.  Since they cannot transport directly to KU unless it is life threatening, they took Adam to Sabetha and he was evaluated there.  Then he got into another ambulance and I got to ride with him to KU Med.  It was a bumpy, painful ride for him since the roads are pretty torn up with construction. But he had two friends from his work taking him on the ride so it was comforting, in a sense to be "carried along" by people who care about him.

When we first got settled back on Unit 64 he was not too happy that we were there because his temp at that moment in time was 98.6 degrees.  But he needed to be in the hospital and I think that was the only way for God to get us there.  

The doctors had hoped that he could get 2 weeks of respite away from the hospital without incident but we only made it 10 days.  So now he is back while he waits for the surgery that he needs to get him on the mend and hopefully back to a normal, healthy life.  

I came home Tuesday night because I had an appointment on Wednesday morning in Manhattan.  When I got ready to walk out the door Wednesday, Katrina came downstairs and asked me if  I was really leaving that early.  I said yes and then she had to confess that my family had cooked up a surprise for my birthday (the following day) in which my dear friend Vickie was taking me down and after my appointment would take me for a pedicure as a gift from my mom and my sister.  It was a great surprise and a wonderful time for me to relax and be able to talk out all my feelings with my sweet friend.  

After getting home that afternoon we got the house straightened up and clothes washed so I could pack to go back down to KC.  It was such a joy to spend my birthday with most of my family and to get phone calls of love from my 2 boys who were working far away.  

But it was a teary day for me.  For one thing, it is really hard to be so loved and cared about when you just want to love and care for everyone else.  My husband surprised me with a lovely gift and card filled with words that were stretching my attributes a lot.  My Katrina gave me a sweet card with words that caused me to cry.  My mom's card made me cry.  My sweet boy in the hospital had a vase of roses for me and a sweet, loving card.  The nurses on Unit 64 even brought me some flowers.  My birthday buddy, Jan had left me some flowers the night before.   Everyone was so sweet to me and it was quite overwhelming.  

And then they told us that we would be meeting with a couple of docs and the surgeon to talk about surgery so there were tears thinking about all of that and possibly feeling a bit sick to my stomach about it as well.  

The meeting of "the 3" never happened but one doctor did come by and mention that he feels that surgery is a necessity and should happen soon by his account.  He is not the one who gets to ultimately decide but he is Adam's doctor so he knows.  The elusive surgeon has never made it to talk to us but that's because he has been doing liver transplants right and left.  He did 3 on Friday and 1 this morning.  He's a little busy.

There were some other incidents that I will not go into detail about here but they were a little distressing at the time so fears and tears happened again.  

We would certainly appreciate your prayers for Adam as he waits for surgery.  He wants it to happen soon, of course, because he hopes it will get him on the path to recovery more quickly, as do we.  But we want it to be in God's timing and with God's direction.  Please also pray for Dr. K, the surgeon, who will be doing a very difficult and complicated surgery to put things back together and to make decisions in the moment that will affect Adam's future.  Please pray that Dr. K would be rested, that he would feel confident of what he needs to do and that he would be wise.  Also,please pray for his associates, Dr. S and Dr. J. 

I would ask you to pray for our whole family as this is a difficult time for all of us.  Anna will be away at camp this week and she came to me a bit ago saying that she is a little sad about leaving during this unsure time for us all.  We want her to be able to get away with her friends in youth group and have some fun after all of this stress this past many months. Pray for Craig as he has had many claims to work that have gotten delayed by the rain which has been nice, but he does still have all of that work to catch up on and it weighs on him.  Pray for my other boys Nathan and Zach, who are away from the rest of us, that they could concentrate on their work and be able to rest in the Everlasting Arms of our Savior as they wait for word on the surgery.  Pray for Katrina, who will be with us in KC that she will be held up also by those same Everlasting Arms as she is a very great comfort to Craig and I.  Pray for me, as I watch my precious son, whom I carried those many years ago and whom I placed into the hands of surgeons nearly 17 years ago, that I will feel that same Grace that steadied me then, now.

We are so grateful for the MANY friends and family who continue to daily lift us up before Jesus for healing and strength!!!

Disclaimer

I just want to get it out there today that we are NOT amazing people because we are caring for our son at home.  In no way did I intend to infer that when I shared our daily schedule yesterday.  It just felt good to put it down on "paper", so to speak and to let people know how involved Adam's medical condition is at present.

People were telling me that we are great and amazing people for doing what we are doing.  But we are not.  We are simply parents who love our children beyond expression and would do this for any one of them.  

But we are not without faults.  We often snap at one another and second guess each other's particular way of doing a dressing, get short with each other and generally fail at being good people many times a day.  It's just who we are and we aren't super human or super loving.  

It does feel as if, by loving and caring for Adam that we are all loving each other better even in the midst of the battle.  

Don't think in any way that I am sharing any of these thoughts in order for you to feel sorry for us because I am not.  My heart has always been to share our needs and Adam's needs here so that anyone who is willing will prayer for him.  

I keep thinking of a verse of Scripture that says:

Galatians 5:15

But if you bite and devour one another, take care that you are not consumed by one another.

I think God is bringing this verse to my mind for  a reason.  And I'm pretty sure it is meant to be directed at ME.    Please pray that as we work together for our one purpose we will be able to love each of  our family members and not be consumed by one another.

Thanks for the prayers!!!

A Day In The Life

I'm sure some of you are wondering what our life looks like in this period while Adam is being cared for at home.  Here is a loose description of a day in our lives.


6:30 a.m.   Wake up, eat breakfast and get ready for the day.

7:00 a.m.    First IV dose of one of his antibiotics is due.  It takes a few minutes to set up the tubing, the medication and to properly set up the alcohol wipes, flushes, etc needed for this dosing.

8:00 a.m.    Put a protein pack down the J tube to boost nutrition.  Hope you didn't forget to put in the last can of formula into the feeding tube this morning.

9:00 a.m.     Morning meds.  Some I have to crush and mix with water.  Others I have to extricate from the capsule that they came in so that he can put it under his tongue.  Flush, administer, flush. Before you can put the meds in you have to put the feeding on hold and remove the feeding tube connection.  Restart feeding.

9:30 - 10:00 a.m.   Redress any drain dressings that are oozing or messy.  This is a difficult process for Adam as it is painful as well as tedious for him to sit up while in said pain.  We have to remove the messy old dressings, clean the area to be free of drainage, then put new clean dressings on in a way that will be easiest to remove it later tonight when we need to do it all again.  Not a pleasant job for us either.  It is not fun to cause your child pain no matter how old they happen to be.  Probably need to remove his shorts and replace them with new clean ones at this point because of the drains leaking badly.  Have to get him up out of bed for this.  While he is standing up we can replace the chux with clean ones and/or put new, clean sheets on the bed.
After this is done Craig empties all the drains and measures the amounts from each one so that we can record it.  Probably the least desirable job as it is also messy and to be honest, smelly.  Then I come along and flush and recap each drain.
Remove feeding connection tube.  Throw away old bags.

12 Noon  Next antibiotic is due by IV push.

3 p.m.    Another dose of the IV antibiotic that he had at 7 a.m. with the same process listed previously.

6 p.m.  Dose of IV antifungal medicine with the same process described in other IV medicines listed above.
            Start feeding.  This entails filling one bag with water and another bag with 4 cans of formula.  Then you set up the pump and get it primed.  Plug in the feeding tube feeder tube and start running it for the next 16 hours.

8:00 p.m.   Give another Protein pack.

9:00  p.m.  Give most of the same meds you did at 9 a.m. with the same process.

9:15 p.m.- 10:00 p.m.  Redress drain dressings again if needed and empty and flush drains again.

11:00 p.m. Set up the IV antibiotic that you did two other times during the day ONE more time.  Add another 2 cans of formula to the feeding tube.

Midnight    Flush, swab, flush, flush the PICC line after that last IV treatment and kiss him goodnight.

In between all of the previous items:    Give pain medication as needed.  Prepare and eat meals.  Clean up the mess you've made with dirty sheets and clothing.  Do laundry.  Do dishes.  Run errands.  Take him to the bathroom.  Get him up to walk.

After midnight:  Go to bed.  Wake up to check on him or take his temperature or give pain meds.

6:30 a.m.  Wake up and do it all again!!!

Our girls have been amazing and have helped us so much.  Anna is taking care of all of the landscaping.  Katrina has decided to withdraw from the class that she was going to take this summer and has reduced her hours at her job so she can be here for 4 or 5 days a week.  She can cook and clean and help in any way we need her to so that is a great help to us.

Zach has offered to come home and help any time Craig has to be gone for work.  Nathan was here last weekend and helped us tremendously.


Now you have a little idea of what is going on in our home.

Home Sweet Home

Yesterday was a day that will live in infamy at our house.  We finally brought Adam home from the hospital to care for him until surgery. 

The day was a whirlwind of activity.  I left home before seven and once I got to the hospital the day got really busy.  We had training in doing the feedings as well as the IV antibiotics.  So much information into my dizzy head.  Then the supplier started to deliver medical supplies.  We got the wrong feeding formula so they had to retrieve it and bring back the correct item.  We spent some time doing some "hands on" practicing of tasks we need to do at home every day and before we knew it the day was flying by and after a lot of supplies gathered, doctors seen, dressings redressed and actually getting Adam in clothes for the first time in a very long time we headed out of room 6427. 

To our surprise and amazement the nurses and aides had formed a gauntlet and we're cheering Adam along as he was rolled down the hallway.  We had tears and words of joy with congratulations for getting out.  I just have to say here that we love those ladies so much!  The men who have taken care of Adam on the floor were not there yesterday and of course the night nurses were not either, so we didn't get to say good-bye to them.  We love them all!!!!!  After hugs and well wishes we took a picture then headed down to pharmacy.  Then it was off to load the car and head home.  

The trip was long and hard on Adam but he powered through and made it into his new bed and some sweet pain meds by around 6:45.  Our home health nurse met us within a couple minutes of our arrival.  

She spent a long evening with us helping us get acclimated to a house full of medical supplies and sorting out what will need to be a very efficient schedule.  Craig and I got to bed shortly after midnight and felt like we did on the first night of bringing home a new baby.  Except with a newborn I don't remember fearing that I would accidentally kill the child if  I made a mistake!!

Adam had a good night and we are hoping to get into a solid schedule and not spend our days totally sleep deprived.  Thank you, again, for all your prayers for us and please continue to pray that God will heal our boy and return him to good health and strength once again! 

"For God has said, 'I will never fail you. I will never forsake you. This is why we can say with confidence, 'The LORD is my helper so I will not be afraid. What can mere mortals do to me?'" Hebrews 13:5b-6

100 Days

Never in my wildest dreams, or nightmares as it seems more correct, did I imagine that we would still be where we are on Memorial Day weekend.  Quite honestly, I can't wrap my mind around the fact that June is right around the corner.  It feels like I'm a computer whose history has been wiped clean for the past 100 days.  I can't even begin to imagine how my son feels.

I know that in the past nine days that I spent with him in the hospital that we have discussed how he feels like he has Stockholm Syndrome in a sense.  You want to leave the hospital so badly and yet you have felt safe there.  They keep you alive there.

As I posted on social media, the tests that they did this week on his duodenum showed no leaks which is an absolute miracle.  Several weeks ago they had described that area as "shredded" and they were anticipating removing the entire area to reroute his digestive system in the future.  I don't really know what all of this means for his future surgery but I believe it means that if he heals more fully they won't have to remove that part of him.  Praise Jesus!!!

So now we will begin another segment of our journey as we plan to, God willing, bring him home next week to begin the next phase of healing.  We will have home health coming in to do the blood work and such but for the most part, I will do the day to day care for him.  That includes several IV antibiotics daily, caring for 7 drains, and continuing his tube feedings.  Let me say here that I NEVER in a million years have wanted anything to do with being a nurse.  But it has been my joy and privilege to take care of my son while he was hospitalized and will be as well when he comes home.

The doctors are huddling together to work on what and how they will do the surgery that he needs to have to get back to "normal".  Right now his pancreas is still inflamed and he still has areas of infection that are being drained out of him.  This is not a pleasant experience.  He has drains on both side, his belly, and 3 in his back.  Lying in bed is not comfortable but it is a necessity.  He is very weak and has lost a tremendous amount of weight and muscle.

I feel like I need to clarify here that his liver is working perfectly and always has been.  This has never been about his liver.  He has a stricture in a bile duct that needs repairing but other than that the illness we have been dealing with was all caused by the procedure that they did to try to put a stent in that duct.

We continue to need your prayers to see him through this ordeal and get him back to good health.  He still longs to get back to work and to be a normal 27 year old man.

I can't describe to you how wonderful it was to leave that hotel and hope that I never have to stay there again during this part of the process.  But I, too, have mixed feelings about leaving the hospital. We have had such wonderful care there.  The nurses on his unit have been fantastic as they have on the other 3 units he has lived in while being there.  It makes my heart sad to think I may never see some of them again.  They feel like family.  I wish I could take some of them home with me to live with me!!!  I'm sure that when he has his surgery we will get to be there again and see them so it makes it a little less difficult to say goodbye.

I will be driving back down to bring him home, so I look forward to saying my teary goodbyes to the nurses, techs and the housekeeping people who have made our days less difficult.  The nurse practitioner who works with his liver docs has become a dear friend to us.  I will miss her daily visits with us that always have included more than just medical talk.

Once Adam is home with us at our house he will still need a lot of rest and time to heal.  But he will be HOME.  Of course he yearns to be back in his cute house in Seneca, but that time will come.  I want to reiterate that he CANNOT eat food by mouth so if you want to visit him please do not bring food as it only serves as a frustration to the fact that he hasn't eaten in all this time.  For many weeks he wasn't even affected by food being around because he had no sense of hunger.  But that tiger has awakened recently and he dreams of food many hours of the day. He still can only drink clear liquids and most of those go out a drain from his stomach.

There is no way that I could ever say enough words of thanks to extend our appreciation for all the people who are praying for Adam and us.  It is overwhelming and humbling.  We love you and are so thankful for the many people God has placed in our lives who are walking with us through this horrible time in our family.
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If you want to keep up with what is happening you can do so here.  I probably won't keep posting on social media as I know it can be annoying to see continual updates.

WE LOVE YOU AND COVET YOUR PRAYERS FOR OUR FUTURE!!!

Prayer: Does it "work"?

There is something that people say all the time--in person, on social media, in cards--that kind of rubs me wrong.  

Prayer works.

I remember getting a baby card when our first daughter was born after our having three sons and the person wrote something to the affect of  'see, God does answer our prayers'.  I took that to mean that God gave me what I wanted (which He did) because I wanted it.  I'm not completely sure I agree with that.

While I appreciated the sentiment behind the message on the card, I felt that it was theologically  incorrect.  Now, I am no biblical scholar by any means but I have had some wonderful pastors who truly taught the Word.  Not to mention that I grew up with Christian radio on nearly every day of my young life, listening to pastors speaking.  So there is a bit of a foundation of Scripture in my life.  

Right now, in this difficult season for our family, many people are supporting us and encouraging us.  Our appreciation for this kind of support is unable to be described with enough words of thanks, so please don't think I'm complaining.

But something about the phrase "prayer works" bothers me.  It makes it seem as though what we DO somehow makes something we desire happen-- as if we have chanted the magic words of a spell enough times.  I don't believe that prayer is that kind of tool.

I totally believe that our prayers move the heart of God.  Luke 18;1-8 is a good example of this.  You can see a good explanation of that passage here.    I like this explanation from that page a lot.

"Persistent prayer is the demonstration of faith in the character of God’s attributes and the chronology of his actions."

God's character is completely trustworthy and true.  He loves us more than we can fully understand and therefore knows what is best for us.  But what is best for us isn't always what we are asking Him for in our prayers.  At the time I was given a diagnosis of cancer that was considered "hopeless" I came home and called my pastor.  He spoke the truth to me when I told him that I just wanted to know that it was going to be okay.  His words were, "that depends on what you mean by okay."  Okay, you are going to be fine?  Okay, you are going to suffer?  Okay, you may die?  Okay, that means you go to heaven to be with Christ?  But for your family and friends, that is not the same kind of okay.

That's where the chronology comes in.  For God, our suffering and dying may be part of the "okay" of our life because it means we are safe with Him in Heaven.  We don't see the big picture. 

So our prayers must be in line with the Sovereignty and Justice of our loving God.  Only He knows the beginning from the end.  

In Daniel 3 we read the story of King Nebuchandnezzar and Daniel.  King N said 'worship me or die in a fiery furnace'.  Daniel and his buddies said, 'we will NOT worship you for we worship the only true living God'.  They went on to say in verse 17:  "If we are thrown into the blazing furnace, the God whom we serve is ABLE to save us. He will rescue us from your power, Your majesty. But even if He doesn't, Your Majesty can be sure that we will never serve your gods or worship the gold statue you have set up."  So God was able to deliver them and He would rescue them either through a literal saving from the fire (which He did) or through their being taken into heaven through death.

I believe this story is given to us to see that the glory would go to God alone for whatever the outcome and to make sure that the young friends' faith was in God alone and not themselves.  And that is how we should operate in our day to day lives.

So we pray.  We ask God to heal our son.  We have asked you to pray that God will heal our son.  With all of our hearts we believe that God can and does do miraculous things through the power of His people praying together.  But it is all up to Him and whether or not we can trust Him, regardless of the outcome.  

I believe that prayer does change things.  Mostly, it changes the people who are praying.  God does answer prayers.  I was taught that He answers in three different ways:  1) YES 2) NO 3) NOT YET

We always want the number one answer.  But God wants us to become like Him through whatever means it takes to get us there.    So, does prayer "work"?  

I believe God works through prayer to help us see Him.

Hospital Update

Today has been a rough day.

We started out the day tired.  Adam was tired because they got him up at 11 p.m. last night to do a CT scan and because he is ill.  I was tired because Monday night was a late night and yesterday was an early morning.  When I opened my eyes this morning after hearing my alarm I wasn't sure if I was home or here.  Reality became clear quickly.

Adam had been told yesterday that he would be heading to the IR (interventional radiology) today to have some things done.  Because of that he was NPO (nothing by mouth) since midnight last night.  The only thing he gets to have by mouth are clear liquids.  His nutrition comes through a feeding tube.

We've been waiting all day to find out what time he would be able to go down to IR. Sometime after 3 p.m. this afternoon his medical team came in and the attending asked if he could sit down and visit with us. He told us what we are dealing with today. 

 Adam has been losing some of his nutrition somehow and has lost more weight.  Remember, he has already lost at least 40 pounds so that is not a good thing. They did a test yesterday right here in the room where they put some pink colored Ensure type product through his feeding tube and as they suspected it mostly all came out through his biliary drain tube.  So NOT getting to his intestines to "feed" him.  So they suspected that either 1) his J tube (the feeding part of the feeding tube) has gotten coiled up or misplaced in the intestine or 2) there is a leak somewhere in his system that is so microscopic that it has not shown up on the CT scans they have done recently. This leak could also be the cause of his white count having been elevated consistently over the past week.  OR it also could be because he has another pocket of fluid in the other side of his abdomen which has been causing him intense pain for the past week.  

So he needs to have some comprehensive tests to find out what is going on along with fixing the 2 drains that come out of his back that are leaking and causing him pain.  Also, they will be putting another drain into that pocket of fluid to get the bad stuff out of him. [For those of you keeping score that will make 7 drains]If the J tube is coiled they can readjust that and do whatever else they need to do while he is in the IR.  They told us they would TRY to get him in during the morning hours but that would probably be a wonderful surprise. NPO again tonight--yippeee! BTW when the doctors had given him all of this information he said "You mean I could have had a drink of water all day and you are just now telling me?"

They also told us that because of his nutrition being lacking for a while and his muscle wasting that if his feeding tube needs to cease for a while he will go on TPN which is a feeding through his picc line IV.  Which means at least another 2 weeks in the hospital if not longer. As you can imagine this was devastating news since we originally were told he might leave tomorrow until the white count went up.  Then we were hoping for the weekend.  I can assure you that all I wanted for Mother's Day was to have my son home and our family back under one roof again. But this will not be happening. 

My heart grieves that my son had to ask the doctor today "Is this going to kill me or will I ever get better and  get out of here?" The doctor said he believes that Adam can beat this.  I do too.  But today has been hard.  Disappointing.  Draining.

Our family covet your prayers.  And if you have any creative ideas on how not to go crazy after many months in the hospital, we would appreciate your suggestions.

The Real Me {Rated BH: Brutally Honest)

If you don't want to know how ugly my heart can be, then you need to just go read some happy decorating blog or some "my life is hard today, I have one perfect child" blog.

See there.  It is already seeping through.  


This morning I was texting with my husband about some things and that horrible, ugly, green eyed monster envy came hulking out of me in one of my responses.  I said, "Sorry.  I have trouble with envy for people who seemingly have charmed lives right now."  

There.  Now you know.  Now you can see that I am NOT some perfectly spiritual being who sees everything through God's lens of perspective.  I trust in a Mighty, Omnipotent God who is able to do exceedingly, abundantly more than we could ask or think.  But I am not Him.

It is far too easy for me to get my eyes off of what needs to be sanctified in me and what seems to be someone else's easier life.

We have been in the valley of the shadow of death for many months now and it has been dark and very lonely at times.  You might even say dark both figuratively and literally. Choked off from the sunlight of reality and the fellowship of the world outside of the medical bubble.

It doesn't take much for me to get my view skewed a bit from what really matters.  

So this morning a devotional said to live in the moment and directed me to a couple Scriptures that made me say "OUCH".  

"Can all your worries add a single moment to your life? Of course not!

And if worry can't do little things like that, what's the use of worrying over 

bigger things?"

Luke 12:25,26

There are so many things that my heart wants to dwell on and be anxious about.  My five children are always on my heart and mind which urges me to pray for them.  There is just so much to pray for right now and I guess today pushed me over the line between concern and worry.

 Some of you are with me in spirit as you have children whether grown or little that need to be drawn in by the Holy Spirit and wooed to His heart.  Others have medical needs or very real physical limitations that won't go away and you SO want them to but know that it is your reality.  Some have marriages that are far less than the perfect images and cute sayings about relationships that we see on social media every day screaming at us that we are less than.  

God's heart drew me in today and whispered to me that none of those things are what He desires for me. 

"Because of God's tender mercy, the light from heaven is about to break upon us, 

to give light to those who sit in darkness and in the shadow of death,

and to guide us to the path of peace."

Luke 1:78,79

This verse isn't describing a method, a plan or a program.  It is describing a Person.

The path of peace is not an actual path.  The light and the peace are Jesus Himself.  He is all I need.  He is God's tender mercy.  He is the light from heaven.   He needs to be my focus.

You need to know that I have to be redirected to that focus each and every moment of every day.  

I'm struggling through this path toward peace, toward Jesus.  He lives in me and I still struggle to get to Him each and every day.  

Sitting in darkness and in the shadow of death reveals to me who I am without Jesus.  I need Him desperately. 

We all do.

Not Knowing Where to Begin

I walked into my home late this morning and quite frankly, I didn't know where to begin. 

Should I clean the sink, put away dishes, wash my bedding, put away groceries, open windows, turn off the heat (!), vacuum, empty my suitcase, pick out songs for Sunday's church service,  take a nap, or eat lunch?  

That makes me sound so overwrought and I'm really not.  I just didn't know quite where to start.  In reality, I was truly just wondering how Adam was doing, who his nurse is today and hoping he wouldn't get the crud that I seemed to have picked up somewhere along the way.  Yesterday I spent the day wearing a mask so as to not infect him with whatever I am brewing up inside my body.  When I texted him part way home and asked Adam how he was doing today, his reply was :  "SOLID".  That's my boy!

With hesitation I will say here that the doctors are tentatively saying that he may come home a week from tomorrow.  That means that before I go back to stay with him next week I will need to get my home sanitized and clean.  Maybe tomorrow.  Truly, that news is wonderful and daunting all at the same time.

 I just keep wondering how our next several months are going to go while he is healing up in preparation for surgery. What will his life be like?  How will he manage to go to work (once he's feeling up to it) with all those blasted drains coming out of him.  He's lost 40 pounds.  What clothes will fit his thinner body and yet cover the drains?  How long will it take him to get some strength back and feel like he doesn't need someone to be with him if we need to go somewhere?  I'm sure those questions tumble through his mind when he's not sleeping or not truly himself because of all the pain medicine and antibiotics he takes. 

I'm looking forward to getting some flowers planted sometime, but it honestly blows my mind that in two days it will be May 2015.  It almost feels like we've been in a coma since February 13th and just woke up.  And while I was in that coma I magically gained a bunch of weight!

My teenage daughter has spent almost this entire semester of school either living with people other than her family or without one of her parents at home.  It feels like a semester lost in a crevice somewhere.  I hope she's doing well in school because, honestly, I really don't know.

If you are praying for us, please consider praying for all the concerns in this post for Adam.  He doesn't complain at all but I know these things weigh heavy on his mind and heart. 

After next week, I'm hoping to get to know my other kids again, putz around the house while I put all of the medical knowledge of the past 3 months to use, while intermittently enjoying the end of the school year and the beginning of summer.

Nothing profound to say today.  Just thankful for the simple things of life and for Adam doing a little better day to day.

We Are Only Dust

This post will probably be a collection of random thoughts. I'm at the hospital this week so I'm using my son's laptop and I stink at typing on it so I will probably tire of it pretty quickly.

We had a good weekend.  Zach came down for the whole weekend and that made it so great for Adam who loves having his brothers here.  He loves having pretty much anyone here but he especially loves having his brothers here.

The other day I posted on social media that I was walking to the bathroom and encountered a woman walking toward me who was sobbing.  She had just walked away from a doctor and they were in the very same ICU waiting area that we were in 10 weeks ago.  My heart immediately went back to that moment in time.  I knew whatever she was crying about was breaking her to the core. I wanted to reach out to her and hug her but she seemed blinded by her grief.  If I had been in our hometown hospital it wouldn't have seemed so intrusive to reach out to her.  But people in the city seem more guarded and I didn't want to offend or frighten her. I let her pass by me.  I've regretted it ever since.

Last night I opened my Bible and I felt dry and burned out in my soul.  You would think that I would be driven to the Word for sustenance.  That has been true in the past when it was ME that was needing God's merciful miracles in my life.  But somehow this 10 and a half week odyssey has pulled the life out of me at times.  Go figure.  So I just opened my Bible and played the roulette of reading whatever page it opened to and I got this:

"The LORD is like a father to his children, tender and compassionate to those who fear him.  For 

he knows we are only dust"

Psalm 103:13,14

God is so good.  He knows that I am only dust.  He knows that sometimes I make mistakes and don't reach out when it seems later that I should have done.  He knows that as much as I NEED Him sometimes I don't have the strength to pick up my Bible and study it but just let the TV play some random show that I'm not even watching.  

He is tender and compassionate like my earthly daddy was and then some.  He knows that I fail and He knows that some days I am so spent emotionally that I just need Him to reach out to me from the page that I "happen" to open. 

I am so thankful for such a loving Savior, Father, Redeemer, God.


Adam is going back to IR today to have a drain repositioned yet again.  He worries about all the radiation he's gotten and is still getting.  I know he wonders when he will get out of here and what his life will be like until he has completely healed.  I don't even know how he has endured what he has over these many weeks except by the grace of a loving God.  Please continue to pray for his complete healing and for all of this to be a blip on the radar of his life one day.

Thank you, Warriors!

Trying to Live in Romans 8

I do NOT want to write another blog post about what we're going through in our lives right now.  But we're still here.

Our day to switch places is coming tomorrow.  My husband has reached his breaking point in being in the fight which happens when you've been there a week.  My son is letting me know that he needs me to be there with him.  My daughter is begging me not to go back.  I am wanting to be with my son but dreading the return to the city, the hospital, the hotel and the "routine".  

But the fight goes on.  It feels like we are perched on a ledge and each day the news from the doctors can push us either over the edge or back into the building but no matter what happens we find ourselves still on the ledge.

It is a battle.  

This morning I was led to read Romans 8.  It talks about the battle for our minds and our sinful natures.  

"If your sinful nature controls your mind, there is death. But if the Holy Spirit controls your mind, there is life and peace." Romans 8:6

When I let my sinful nature control my mind fear, worry, anger and bitterness want to control my mind and that is death.  I WANT life and peace.

It is a battle.

I'm trying to stay in it by going to the Word and finding hope.  But on many days I really feel like I don't know what else to say to God.  I'm sure many of you feel the same way in your own lives or in praying for us as so many of you are doing so graciously.

"And the Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray.  But the Holy Spirit prays for us with groanings that cannot be expressed in words."  Romans 8:26

So many times I have cried out to God and said "I don't even know how to pray anymore because I just keep saying the same thing--Please Jesus, just heal my boy."  

The medical world is a complex web and in particular when you are in a teaching hospital there are levels upon levels of doctors, residents, attendings, etc that come to you each day with their thoughts and opinions of your condition.  Some days it seems like all they can tell you is seemingly really bad news.  You wonder if you will ever hear a good word or if anyone really knows what they are doing.

"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." Romans 8:28

To be honest, I most truly understand that after 9 weeks of our predicament most people's lives have gone on and we are merely a blip on the radar of your daily prayers.  I get it.  I have lived it when other people's lives were struggling.  We also live 30 miles from where we go to church so our dearest friends' daily lives are always far removed logistically from ours.  Truthfully, that has always been really, really hard.  You feel so removed from the support system you so desire with which to connect.  It is lonely and isolating.

"What can we say about such wonderful things as these? [the things working out for the good]  If God is for us, who can ever be against us?  Since God did not spare even his own Son but gave him up for us all, won't God, who gave us Christ, also give us everything else?"  Romans 8:31,32

It is a battle.

Once again, the mind is the battlefield where we must focus on Christ and what He is to us.  But we are mere humans and the battle is tough.  Yes, Christ loves us and is for us.  But sometimes you don't feel it.  I told someone at church on Sunday that I just wanted for one good thing to happen for my family this week.  It felt awful even expressing that but it is how I am feeling.  

I want to focus on what Jesus is to me but, my friends, it is a battle.  

"Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or are hungry or cold or in danger or threatened with death?  No, despite all these things, overwhelming victory is ours through Christ who loved us.

And I am convinced that nothing can ever separate us from his love. Death can't and life can't.  The angels can't, and the demons can't. OUR FEARS FOR TODAY, OUR WORRIES ABOUT TOMORROW, and even the powers of hell can't keep God's love away. 

Whether we are high above the sky or in the deepest ocean, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord."  Romans 8:35, 36a,37-39

Run to the battle, my friends.  We need each other.

Warning! You Are About to Enter the Feelings Zone

Spring feels a little more powerful to me this year.  We left here in a hurry in mid-February with snow and ice threatening our safety.  Though I have been home a couple times intermittently, it is amazing to leave in February and come home with full blown spring in process.  It is like we've lost those months in a time warp.

 The trees were stark and dead looking when we left and almost every tree in our yard is filled with infant leaves now.  The grass was brown and covered with snow previously and now it is green and needing mowing.  My landscape plants are starting to awaken to the season and the birds' singing is the most amazingly, beautiful sound to my ears.  

To go from the constant noise of a hospital with all the beeping of IV pumps, the announcements on the intercom, and the hustle bustle of the never ending activity whether day or night to the peaceful symphony of birds singing is indescribably wonderful.

But my heart wonders.....

I'm wondering when they will get the feeding tube positioned correctly today?  How will the feedings go when they start them after the 24 hour wait?  Did my son sleep well last night?  Is he still vomiting up everything he drinks? How long will he remain in the hospital?

And those are just the questions for today.  

My mind wanders to the future days when we are finally able to bring him back to our house. because, you see, even when he comes home the gavel will not have hit the desk yet declaring him well and case adjourned. 

Will I be able to effectively care for all of his medical needs? Will they require me to measure what comes out of his drains every couple hours as they are now or will I be able to just empty them every couple hours and flush them every 8 hours? Will I be able to tolerate the smells?  Will we have someone to give him his IV antibiotics or will they train me to hook him up to his picc line? How about that feeding tube? Will I be sterile enough in my work that he doesn't get more infections? Will he be able to shower or will we have to figure out something else? What clothes will he need to fit over his drains and also fit his body which has shrunken several sizes?

When I was sitting in the hospital room the past few days my mind was fixed on these questions. Because it will not end on the day they send him home with us and that picks at my soul.  While other folks are anticipating their kids' weddings, new grandchildren, first jobs or other achievements I am hoping my kid will make it out of the hospital and praying he will one day have a normal life again.  That sounds like I'm feeling sorry for myself or that I'm unable to be happy for you.  Not really.  It is just my reality and I'm telling you how I feel.  

My other children's lives are ongoing and they want to be happy and enjoy the normal fun events of life too.  But in the back of their minds is the fact that their loved and cherished brother is fighting just to be well again. Should they feel guilty for moving forward? Their parents are pretty focused on one kid right now. You can imagine how they might feel.

And lastly, being prayed for, loved, visited, encouraged and helped is a very humbling thing. Each person who has come down to visit Adam has made him shake his head in wonder.  He has felt your love and encouragement by your many acts of kindness toward him.  In your love for him you have loved us and it is overwhelmingly appreciated.

A dear cousin of mine graciously offered to drive here and in her words "come out there and hold your arms up like Aaron did for Moses".  Amazing.

But let me say that we need that in the spiritual sense.  Many days I feel so weary and dried up spiritually that all I can pray is "Jesus, please heal my boy".  The words won't come and the strength is gone in myself.  That is when I depend on Jesus to send me your comforting words and prayers to keep me going when it feels like I cannot any longer in my own strength. 

Thank you, dear friends.  We appreciate you more than I can express.