More Faith and More Grace

Someone said, I have been looking for a blog post....so I decided since you haven't posted I would just call!  If I can just add a personal note...Beth you have no idea how much that meant to me!  When I chose to write a blog, I did so for the ease of getting information to our friends and family.   What I didn't realize is that because of my blog no one has to ever talk to us to know what is going on in our life.   Yes, I know I should have known that from the start but it just didn't register!!  I must say that has it positives at times but it also bring negatives as well.  However, it is still something that we feel God has called us to do and is using in the lives of others.  When I look at posts and see that over 500 people have read that blog entry, I stand amazed.  We are just ordinary people leading an unbelievable life!  And God is using our drama to touch the heart of others.  I promise, that is a God thing.  I once said we could make a reality show and people would be crazy enough to watch it.  Kinda like we think you all are crazy reading our blog all the time!  But we do pray that God would use our struggles and our faith to encourage you!

Zine and I have continued to move forward in life.  We went to church last Sunday and out for dinner.  We have had our occupational therapist here this week.  Our home health nurse has been out this week.  The physical therapist has been here twice.  Karen managed to sneak her routine massage in and a trip to the dr with a dang headache that wouldn't go away.  I have spent hours on the phone working on new insurance and disability transitions.  We have made difficult decisions this week.  We have shed tears this week.  We have had heart felt and heart wrenching conversations this week.  I overheard Zine talking to Krisann this week and this is what I heard him say, "Krisann, I wished God would heal me too.  The Bible says if you have faith the size of a mustard seed, you can move mountains.  And Krisann I have faith and I know that God can heal me.  But you know what I think, I think it takes more faith for God not to heal.  So we just get to have more faith."  Now if those words don't break my heart for a daddy to have to say those things to his six year old, I don't know what would.  Later I commended Zine on what he had to say!  It touched my heart.  And I agree.  Our faith has definitely been tested and our faith has definitely grown.

The past two months have been unbelievable.  In a nutshell, we have had three ER visits, two hospital stays, one rehab hospital stay, an ambulance ride, two surgeries, a trip to Ohio and the realization of scar tissue around Chloe's heart, a complete emotional breakdown for Karen, several trips to the nutritionist and psychiatrist, and numerous difficult counseling sessions for one person or another.  Not to mention that our freezer decided to melt cheese and had to be replaced.  My oven decided it didn't want to send electrical communications anymore and it had to be replaced.  Our lawn mower quit working but thanks to Zine's dad, he was able to help Conner fix it.  And now...my air conditioner is out.  We can spend several thousands replacing the air conditioner or we can spend 1/3 more to replace the entire thing!  I started to call it "stupid thing" but for someone with MS, heat is something they can't tolerate so in my house, the ac is very important.

So...if anyone has a reason to complain, I think we earn the right.  But you know what....I can't!  I can only give words to how God has been faithful.  He has been faithful to provide for us financially.  Despite Zine's low income while on short term disability, we have survived!  And then add in the major purchases, but once again, God has been faithful to provide through others, through savings, through money back from Uncle Sam...God has shown us very plainly His faithfulness.

God has carried us when our strength was gone!  The first night in rehab...God carried us!  We did not endure that experience on our own that's for sure!  Sitting in a doctors office listening to a cardiologist tell you that scar tissue is building up around your heart...God carried us!  When Zine was so sick he didn't talk...God carried us.  When my children were tired of "adulting" (yes that is a word at my house)...God carried them!  When my youngest is losing it emotionally outside a hospital elevator and I remind her that Jesus lives in her heart and He is always with her...God carried her!  When my middle struggles to understand and can't put things in perspective...God carries her!  When my oldest has more responsibility on his shoulders than most adults...God carries him!  We can do all things through Him...because we know He carries us!  And not only does He carry us but He sings over us!  That is my favorite visual...God holding one of us as He rubs our back or strokes our hair and sings over us with the sweetest lyrics ever!

Now...I would love to say we live in this attitude everyday!  But nope...we don't!  We are human.  We get stuck in the middle of difficult battles or difficult circumstances and we lose focus.  We become defeated. We get our eyes fixed on our problems and not on our God.

Zine made himself purely sick over disability approval instead of trusting God to work all things together.  Karen became so defeated in her eating that she lost the desire to battle.  Zine believes that he deserves MS and his self worth is minimal.  Karen's faith all but disappears in the middle of difficult situations.  Zine knows truth but believes lies from the enemy many times.  Karen forgets that God is good.  Zine gets angry.  Karen retaliates with anger.  Yep...we're human and we struggle.  We are NOT perfect!!  But we are the only ones who expect perfection of ourselves.  We need to learn that grace isn't just for others, but we are to immerse ourselves with it.  And I have to offer that grace to myself regularly.  I find myself saying, Karen, just because you are operating in survival mode does not mean you are a failure.

Survival mode means everyone finds them something to eat for breakfast and lunch and sometimes dinner.  And sometimes that means fruit loops and cheese puffs for three meals in a row!!!!!  Survival mode often means that Krisann gets a bath twice in one week (before church on Sunday and Wednesday)!  Survival mode means forgetting appointments until my reminder goes off on my phone.  Survival mode means I'm often short and snippy.  Survival mode means everyone feels like chaos is everywhere.  Survival mode means the same load of laundry has to be washed seven times or until Nan comes and rescues my laundry!  Survival mode means the mail gets stacked up for days or weeks at a time.  Survival mode means there are 500 emails in my inbox.  Survival mode typically means no rest for the weary.  Survival mode means the simplest decision is near impossible.  And folks, I have been in survival mode for three months now.  So I have had to give myself a lot of grace...and that's not easy!

Zine and I have had numerous conversations regretting the decision that we made to move forward with chemo.  Not one time but two!  Zine often says if I knew then what I know now.  We know why we made those decisions and there is no reason for us to beat ourselves up over those decisions.  We simply need to extend grace to ourselves knowing that we prayed about, sought wise counsel for, and agreed on as well.  So no need to go back and regret.  Just grace.

I can't help but find myself thinking as I write this, I wonder what situations other people need to give themselves grace.  Grace for me, Grace for you, Grace for me, Grace for you!  Grace, Grace, Grace!

Sorta Settling

So we have been home for almost a week.  In some ways, we are settling in.  Zine is stronger. He has mastered his sliding transfers again.  He still goes back to bed and naps everyday.  But the past couple of days it's only been one nap instead of two naps.  And some mornings he does not want to get up too early.  Which is quite unusual for him.  He has been known for being the early bird in our house.

He is still not wanting to eat a whole lot and seems to be sensitive to what he eats.  And nothing tastes good to him.  I welcomed him to my world where nothing tastes good.  Not sure he appreciated that welcoming too much.

He has found his voice again!  He is back to rambling and talking to anyone who will listen and then sometimes to those who don't really want to listen.  Ha!  If you know Zine, you totally understand.  However, what we have figured out is that Zine talks non stop because when he talks non stop, he controls the conversation and you can't get too personal.  He would hate for you to ask a real personal question and he have to tell the truth or change the subject.

We have home health nurses, home health occupational therapy, and home health physical therapy.  He doesn't like physical therapy.  He thinks they are mean to him.  :-)  I personally like having home health nurses coming in.  It gives us a place to call, when we have a problem or question.  Two nights ago, we got his cath bag caught in the shower chair.  So now I have a cath bag that has a hole in it and no extra bag.  YIKES!  So I call home health and when my brain doesn't work...theirs does!  So they had a solution for the night and came out the next day and got us a new bag.  And I didn't have to get out and drive into town to get one.  Yay!!!  But with nurses and therapists coming in almost daily, it does make for a crazy house.  One day we had two different nurses come in one day.

Zine still does not want to admit the reality of where he is.  So that continues to be a struggle.  What is more important independence or safety?  Finding the balance between the two is often difficult.  A question we battle and discuss daily.  He also has been struggling with denial/anger.  Unfortunately, those of us that live with him....we don't like the anger or denial stage at all.  But we do try to be nice...sometimes.

I am definitely not settling in.  I don't feel well.  I am very depressed.   I am not motivated to do anything.  I am tired.   I am extremely unsettled and dissatisfied.    Most all the time, I tend to roll with the flow.  But seems like these past two weeks, I have not rolled with the flow as well as I usually do.  Desiring peace and contentment for sure.  I have more than just Zine weighing heavy on my mind right now so when multiple things are just tugging at me constantly, I think I become a bit frustrated and overwhelmed.

We still haven't got back in a good school routine yet.  Yes...we will be doing school all summer. But that's okay.  We won't count how many days we've had to take off this semester.  But when I think about it, we may not have finished our math books, but my kids have learned SOOOO much aside from the books.  They've learned life lessons that many never learn. Their hearts and lives have been changed forever.  So they've learned...no doubt!  And my approach has become are you smarter now than you were when school started?  If so, then it's all good!!!

Tomorrow morning, we will be heading to the doctor.  Zine's enzymes must be checked again.  We are hoping those liver enzymes have come down.  There has not been one day this week that someone has not had a medical appointment!  They have definitely kept me busy this week!

So...although life is better not in the hospital...I'm not sure we have settled in!  I am beginning to wonder if we will ever settle?

Home and Busy!

We made it home!  I think we got home about 3:30 Thursday afternoon.  Zine went immediately to bed!  And then he needed to get up and down a couple of times which was pretty difficult on us both!

Showers are extremely tiring for Zine.  Zine is eating very little.  But has gotten a bit better about eating since we've been home.   Now what I fixed for dinner the past two nights didn't set well with him.  So I'm learning he needs really really bland foods right now and no fat!  And I on the other hand.....need lots of food with lots of fat!!!  Despite my good efforts to pay attention to my food I digressed greatly over the past two weeks.  From Ohio to Madison Hospital it has done a number with my eating!  Ugh!  I feel like I'm having to start all over again!  I am super duper discouraged about that.  But that's what got me to this place...stress.  I'm a no eater when I'm stressed.  

We were having a hard time getting Zine in the bed without hurting him.  And as I looked at our hospital bed, I knew what would help.  So with a phone call, I was able to get half rails!  And we have lowered our trapeze bar so he doesn't have to reach up so high.  And I'm learning to sit the bed up before Zine moves over in it.  We are learning some tricks to making it easier.  Zine is better with his transfers today.  He naps twice today so we've had several chances to practice those transfers.  We are back to the transfer board most of the time.  But he's improved as we've transferred.  This morning using the gait belt he even stood up for a few seconds.

I did learn something Friday!  I was told at rehab we would be renting our hospital bed.  However, I discovered today...we actually bought the bed!  It is ours...after I pay my bill that I received from them.   That was not what was told to me.  I was not happy.  I talked to three different people and finally talked to the general manager and no one can tell me how it got like that!  Rentals are almost always the way they are done.  I told the lady if I was going to purchase the dog gone bed, I sure would not have bought a crappy mattress that we've had to put foam over just to be able to lay on it!  So...I had to make a decision...to keep the hospital bed or to have them work with insurance at repaying insurance.  But the General Manager asked if we would need it in future because her advice was to keep it and not send it back.  Now, I have to wonder if that was not a God thing.  It was NOT supposed to be this way.  This was a temporary thing.  Or so we thought.  But maybe God knew neither Zine nor I would ever want to move to a hospital bed so maybe he made it easy for us!  We are currently trying to decide what we are going to do...Krisann's residence is in my room right now and I don't know if I will ever succeed at getting her back to her room.  But I can't do that too well as long as I have her bed.  So...we are praying about the decisions to make regarding our sleeping arrangements.  I think I know the best answer but dog gone it, I just don't want us to go there.  But I really, really believe God was in the details that we have a hospital bed!  And on top of that, because I didn't make the General Manager go to all that work to reimburse my insurance company, she sent me a brand new upgraded mattress.  (Of course, it couldn't get any worse than what we had!)  

Zine has started getting choked on liquids at times.  He choked twice in the hospital on some juice.  And tonight he got choked again on some water.  We do not like that!!  That does happen with MS!  They ask us every time if he's having swallowing difficulties!  So I'm afraid the answer is now yes.  Praying that is not the case but Zine has already said that's what it is, and I'm beginning to think it might be.

I do not think I can adequately put in words how terribly sad we are right now.  And I know I can not adequately express how alone we feel!  I think our house could be full of people and we'd still feel alone.   We feel like no one gets it.  And in reality I know no one can unless you have walked a similar path.  I would have never gotten it before now!  And we are completely different people!  You don't go through what we've gone through and not be changed.  So sometimes I think our social skills have been impacted greatly!   Just praying that God can work in our emotional status and in the depths of our hearts to bring peace!  I love this definition of peace...peace does not mean to be in a place where there is no noise, trouble or hard work, it means to be in the midst of all those things and still be calm in your heart.  We need a calm in our heart in the midst of all we're going through.

We are grateful to some organizing fairies who have made a huge change in my house while I have been away!  To think I used to be organized and every item had a home...long gone are those days!  But it is super nice for things to be organized and for Krisann to have boxes labeled so she knows where crayons go, etc.  Why did I not think of that??  Oh how I am trying to keep it organized and working on teaching her to keep her stuff organized.  And this week while we were gone, even the big kids worked hard at keeping it picked up!  YAY!!!  And the Smith kids were blessed with some Dunkin Donuts a couple of days this week and we all know how much Krisann loves those!  

Our children have turned into adults overnight!  And they have bonded in ways that they probably would have never bonded had we not gone through what we've been through!  And for that bonding between them I am grateful!  They said Krisann was a near angel this week.  And I listen to them talk and I hear the love that has grown in their hearts!

We had to buy a new refrigerator not too long ago!  And now our oven is on the blink, and our lawn mower is broke.  So...I think I'm about to see how good of a mechanic and appliance repair woman I can be!  It's amazing how little things like this can be so frustrating when your emotions are on edge. Our medical bills are coming in like crazy and they make my stomach churn everytime I get one.  It's crazy!!

There's so much more I could say but I can never share all the details of life!  I would be here typing forever! But for now...we are home.  And we would prefer to stay away from hospitals for now!  It's terrible when the ER doctor and nurses know who you are.  So can we not do this again for awhile?  We love Madison Hospital but we'd just like to take them some goodies and not live with them!!  

Thanks for your prayers this week.  It has definitely not been a fun week!  And definitely a week full of emotion. 

Still here...sigh.

We are still here at nice little Madison Hospital.  We are ready to go home.  Hopefully tomorrow.

The doctors and therapists recommend going back to rehab.  But Zine does not want to.  So...I will be taking him home against medical opinions.  (First time we've ever done something like this.)  But truly, I do not think he is well enough to go to rehab.  I don't know if we can put our family through that again.  And we have decided to no longer treat the MS, so there is very little rehab that can actually happen.  The more PT we try to do the more his body literally stiffens and rebels.  So I think we just need to admit where exactly we are and however solemn it makes us, we need to operate in reality and not some make believe land.   The therapists here have taught me some tricks today to better be able to help him.  He does not like the gait belt...but it's just going to be part of life I think.  And I'm sure they will have some more tips for me tomorrow!!

His pain is more manageable and today we have moved from IV pain meds to oral pain meds.  He still has waves of nausea.  And if you touch near his pancreas it still hurts.  But his enzymes have come down a lot!  He is VERY weak!  But he did sit in his chair awhile today.  At least a bit different position!

Today has also had a lot of emotional struggles as well!  There are definitely many emotional struggles that have to be worked through.  But for now, I will simply say we are exceptionally sad at where we are in life right now.  Please don't ask us what we need or how you can help.  We don't know!  So if you know of something you want to do, then just do it!  We simply are trying to figure out how to function and make life work.  This kid goes here, that kid goes there, Krisann comes to hospital with me, etc.  And as we think about going home, there's thoughts of how to function and how we are going to work on building strength back at home, and am I really going to be able to do what he needs, and is he going to listen and follow the rules, etc. It is SOOOOO hard to lose your independence!!!  Especially for a man!  My heart hurts so bad for him...love deeply hurt deeply!  And other times....well...I think I could shoot him!  So I'd say we have a pretty normal marriage.   So that's where our thoughts are all centered.  Beyond functioning, we don't see the needs or anything!  Just in our own little world trying to make it work.

I am trying to make a decision right now so I would appreciate your prayers that I would make a wise decision!  Continue to pray for Zine to feel better and for strength to be regained.  I know we will never get back to where we were, but if he could feel a bit better and have a bit more strength that would be nice!!

We are probably going to have a LONG night here tonight!  I forsee it in my future.   So just pray!!  Not to mention, I am exhausted to begin with.  And he is so sick.  So anytime he loses sleep it does indeed wipe him out and he's already wiped out, so if this is a no sleep night as I suspect....it's going to take an even further toll on his body.

I would never take his picture with him being so sick!  But I'll share a couple of my tired self.  The first one was taken early in the week.  And I just thought I was tired then.

 I was thinking....I'm so tired when I took that first picture.  But scroll on down to the bottom two pictures that I snapped tonight...I'm thinking the first one...I wasn't so tired in after all!!

So if you can see the week has taken its toll on me!  I have tried to take care of Zine, check in on my kids and take care of my girls when Conner wasn't around or at least make sure they were taken care of, and try to keep up with my school work.  I have videoed at night and posted for the next day.  I didn't realize how much that had added to my plate until tonight I didn't have to do that because I have a sub tomorrow.  And I have been like thank you Jesus I didn't have to do that tonight.  I have also had to fight for every bite I have put in my mouth!!  I haven't even kept up with what I ate this week because I know it has not been great.  But I'm hoping I have eaten enough to not lose weight.  Some days have been better than others!  But...it has been a HUGE struggle for me all week.  But at least this time I was aware and have made some strides to do better than I typically would have done.


I have told Krisann this verse numerous times this week and have quoted it to myself many times as well.  Be strong and courageous do not be discouraged for the Lord your God is with you where ever you may go.

Surgery Happened

Zine had a horrid morning.  He was in SOOOO much pain.  He has laid in this bed, not talked, and kept a pillow over his face.  I do NOT like my guy being so sick!

In pre op they gave him an ice bag to go over his eyes and he really liked that.  They gave him something in surgery to take care of the horrid headache he had had.  Surgery took right at an hour.  The doctor said the gallbladder was full of gallstones so it was definitely the right decision to take it out.  Unfortunately, the surgeon said without a doubt, the gallbladder did not cause the pancreatitis.  The pancreatitis was definitely caused by the chemo...even though it is not listed as a possible side effect.  But there is no doubt in the doctors minds here that is where it came from!

Since coming back to room, Zine has pretty well just laid here with his eyes closed....but the pillow is not over his face.  He has a sore throat!  And he is in a lot of pain still!  Think he may have two different kinds of pain!  One from the pancreas and now one from the surgery.  He rolls his head over ever once in awhile and looks at me.  Sometimes he will say something, but most of the time he just looks and then closes his eyes again.  

He asked for pain medicine earlier this evening and it was still two hours before he could have it.   He gets pain meds in his IV.  He also gets zofran in his IV.  He is getting IV antibiotics.  And today they had to give him magnesium because his magnesium levels were down.  He also gets protonics in his IV as well.  That port is getting put to very good use right now!  His heart rate is running high but that is just from pain.  His blood pressure is good and his oxygen level is good.

His enzymes need to come on down to normal range, and he needs to be able to tolerate some type of caloric intake.  He has had no calories by mouth since Friday about 5 pm.

One of the major concerns for him after surgery is developing pneumonia so we are definitely praying against that!

The kids came up for a couple of hours tonight.  They are all needing mommy loves.  Even my Conner said I'm never too big to sit in your lap!  And he piled right on up in my lap for some attention!  I tried to give all three of them a little bit of one on one time.  Zine hardly spoke to them at all but at least we were all in the same room!  And at least I got some time with them!!

When they got ready to go, Krisann had a very hard time.  I walked to the elevator and we had to have a pep talk.  And with as much effort as I had, I stood there in front of the elevator and prayed with Krisann!  Oh my mama heart...don't cry be calm!!!  Conner was SOOOOO good with her too.  And I know when he took her she was sad but she wasn't totally falling apart!  I can't imagine how hard this is for her!!!  There was a man sitting in the chairs at the elevators and when they got on elevator and I turned around, tears were brimming in his eyes.  He said one simple sentence but it definitely touched my heart!

My sweet Chloe is having a really hard time.  She had a rough visit at the doctors this past week.  Only to come home and have her world rocked again with her daddy.  My heart is hurting so much for her.  She's got a lot to process.  She and I visited together for just a little bit tonight.  But we are in need of several processing conversations!

  So....you've gotten a glimpse into our day!  I have just spent 30 minutes doing a recorded class for my students tomorrow.  30 min is much shorter than 2 hours, but at least they got a little teaching!  And yep....I did it looking like this!  I don't think make up will even make this face pretty right now!!  I am weary and exhausted!  When I enter function mode, I shut the emotions down because it's easier to function.  But today, those crazy emotions started rising to the surface!  But....I just wasn't ready to go there yet.  I've let some tears slide but I'm about to have to have a good long crying session I think! Sure am glad that I know that God's strength is made perfect in my weakness.  And that I can do all things through Christ who gives me strength.  I assure you that we have only walked the past three months because of His strength.  When I sent my baby off tonight after praying that God would comfort her and she would remember that He lived in her heart...that was MOST DEFINITELY God's strength.  Chloe is definitely an example of God upholding and strengthening her right now.  I know she feels weak, but I know the truth!!  God is at work even in her life!  And Conner...that guy never ceases to amaze me.    And I absolutely loved the hugs I got yesterday and I loved him climbing up in my lap tonight and showing me his guitar book!!  I pray all the time for my kids that the trials of life would transform them and not scar them!  And tonight that seems to be heavy on my heart!  God, please transform my children to be more like you and protect them from deep scars as we go through life together!

Hospital Again!

I arrived home late Thursday evening from Ohio.  Got up and made a trip to Cullman Friday morning.  That was a somber visit to say the least.  We are definitely still processing all of that visit.  We will share at some point!  But only after we have processed through!  And life has not allowed us to process through at this point.

After dinner on Friday, Zine began to feel very bad.  Thought he might be getting a stomach virus.   We ended up taking meds for nausea and indigestion.  Finally at 1 am, I convinced him to just try to go to sleep.  So we got in bed about 1.  Only for him to awaken a bit before 6 feeling very, very bad.    Showered in cool shower to try to stave off what we thought was going to be a MS hug.  As the day wore on, he just felt worse and worse.

I was very concerned about Zine.  His color was off, his symptoms were none like we've ever dealt with before.  I knew in my heart something was not right.  I let him give me reasons why he didn't feel good until about 3.  At 3 in the afternoon, I sat down and just explained that I felt like there was something going on that we couldn't see and I really felt like he needed to be checked out.  Now, let me say...he felt horrid!!  The only times Zine has ever admitted he felt bad he was VERY sick.  So when he admitted he felt bad, I knew he was VERY sick.  He obliged me without too much argument to come to ER. We went straight through triage and into a room.

What we have discovered....

His enzymes that the pancreas produces were extremely elevated.  Elevated by multiple thousands!
His blood sugar was high.
His liver enzymes are elevated and his liver is enlarged.
He has gall stones and his gall bladder is enlarged.
He has been diagnosed with acute pancreatitis.
We were admitted to hospital.
We slept none last night. And had slept very little on Friday night.
He will have surgery in the morning to remove his gall bladder.
We will be here thru mid to late week.
We loved the internal medicine doctor we had this morning.
We loved the surgeon that spent a long time with us this morning.
We would love to feel like we could come up for air long enough to take a deep breath!
We do not like that we have yet another medical thing to deal with.
We are sad that our kids don't get scared when they know that dad's going to the ER.
We don't like the fact that our kids have had to grow up so quickly.
We despise chemo and its long lasting effects!
We are done fighting this disease.  This disease called MS can now take its course and we will treat symptoms.  But no more chemo, no more immune modulators...done!  At some point you have to make tough decisions.

Zine doesn't like to take pain medicine because he feels like a whimp to take pain meds.  But when he finally agreed to some at 5:45 this morning, he saw how miserable he had been and has been being a good patient and asking for it when he gets to hurting.  Mid morning when the surgeon was in here, he got very sick.  So they have given him nausea meds through his IV to help with that.  But truly our door has been a revolving door constantly of medical staff. Hoping it is going to settle down.

We did learn in the ER that they have seen two other patients besides Zine who has had the same chemo come in with the same problem.  So we do feel and the doctors feel as well this is side effect of the chemo.  And for that reason, it is hard to know how long this could affect him or even after it clears up, will it return.  As the surgeon said this morning,  I don't have a crystal ball!

I'm done writing for now.  It has taken me literally about three hours to write this post because I keep having to sit it down.   But...now you at least have an update!  Be praying that surgery will go well and that there will be no complications!