Let the seasons change

These days, I'm continually remembering the past year of our lives.  A year ago, we were on a unbelievable roller coaster ride.  Heck, we are still on that roller coaster...we've just changed seats and are riding again.   But a year ago, we were experiencing so many firsts.  First glasses.  First cath.  Surgery for permanent cath.  Heart test.  Surgery for port.  First chemo.  All in a matter of one week!!!

Currently, we are making decisions about the next chemo we are going to try.  Wednesday the decision will be made!  The struggle is relentless.  Conversations of long term side effects, short term side effects, possible results, timing of treatments, etc. seem to infiltrate discussion after discussion.

Relationally, a year ago, we had a sweet relationship with each other.  However, over the past year, the relationship has struggled.  Especially in the past three or four months marriage has just been exceptionally difficult.  And for the past two weeks, we have lost count as to how many serious conversations/discussions we have had.  And those discussions are physically draining.  Healing and mending relationships take time!  We have to remind ourselves we didn't get to this place over night! But at same time, so grateful for the improvements that are taking place and the healing that is in the works!

One of the things I have told Zine since we started dating is that he gave the best hugs!!  And he did!!  I have melted in his arms more times than I care to count!  That's been my safe place!    But...I think we need lessons on how to give hugs from a wheelchair.  They just aren't the same!  There's something different about your husband pulling you to himself and holding you than there is for me to bend down and let him put his arm around me.  Just being real here....

Our children have become more impacted by MS over the past few months as well.  And they all struggle so differently!!  I'm sure the home environment has played a part.  I think just accepting reality has played a part.  As a parent, to watch your kids struggle is very difficult!  I can't imagine the pain it must be for Zine to watch his kids struggle because of his disease!  But I remind myself constantly and I remind Zine on occasion that these struggles make them the person they are today.  (And I happen to love each one of these persons just the way they are!!)   These struggles are preparing them for the plan God has for their lives.    And we must remember it is not our job to be God in their lives!  Our job is to love them through this season!  It's God's job to protect them from unneeded pain!

Anyone who deals with a long term illness, understand this...your friends often disappear.  They get tired!  You get tired of needing things. Relationships just struggle.  Friends don't know what to say.  And if they do say something,  it is sometimes greeted with frustration!  You begin to feel that you are simply someone's mission project at times.  Keeping relationships in tact is simply put...difficult.  There is always a grief when I think of changing relationships.   If I could only learn to just hold on during those times of change.  God always is providing but I just don't want relationships to change.

I love the phrase that a sweet friend used to tell me all the time....this is for a season Karen and the seasons always change!  I am so grateful for that truth she poured into me over and over and over again!  Sometimes when we see the season changing, its scary!  Sometimes we see the season changing and we're grateful.     But there is one thing that remains constant even as the seasons change, and that is His presence is always with us!  He goes before us, He stands with us, He walks behind us (and gives us some pushes periodically), and on occasion He simply shows Himself to us in very real and tangible ways.

So I am watching the seasons change these days.  A relationship that was good, then struggled immensely, and now is working it's way back to more steady place.   From changing sheets three and four times a night and lots of trip to a bathroom to a permanent cath.  A disease that did not respond to chemo, but it did cause blood clots, and now a new chemo is on the horizon.  From kids that have been accepting and loving to frustrated and angry.  From kids who sometimes seem to have it all together to other times they are falling apart.  From kids who didn't really understand to a time of intriguing questions and thoughts as they seek to comprehend.  From feeling connected to feeling disconnected.  From having time to focus on others to having to focus inwardly.  The seasons are definitely changing!






    

The Week that Went and Went and Went

This week has been unbelievable.  On Sunday night as we already shared Zine took a fall.  On Monday, we had an encounter with "an angel" at the hospital.  One would think that after such an encounter that life would be awesome.  Well, life has been very difficult.  We have had numerous in depth conversations about how life has become, how life needs to change, how Satan is stealing, killing, and destroying, and the list could continue.  It has been emotionally draining!!  But I am so thankful for even the little improvements!!  I will take progress any day!  And I will take the fact that Zine and I have communicated and discussed and not yelled, belittled, given silent treatments, gotten lividly angry as great progress.  We just have had the opportunity to work on communication skills in marriage a lot!

After our visit to Madison Hospital, I then made it to Birmingham for my one month follow up from my surgery.    Now...when I first came home from hospital I got to do physical therapy with this stick every hour.  And let me just say...it was torture.  My mouth indeed did not open to that marked line, until about try number 5 or 6.  I was supposed to do these exercises 10 times for a count to 10 every hour.  And then at 2 weeks post op, I was able to go to 5 times a day!  I was so sure that when I went back this time, he would say I could stop!  But oh no!!  It didn't work that way at all!  Scar tissue is beginning to form and things were not opening like he wanted.  So I'm back to the stick every hour!  Arghhh!!!  I have been very diligent to do these exercises because the thought of having to do that surgery again because scar tissue built up definitely doesn't warm my heart!!  So...the stick and I are getting to be very good friends.

I left Birmingham late afternoon and travelled home to have a painting night with these fun ladies.

Monday was the day that was full enough that the week could have been over that night.  But instead it was just the beginning!!

Tuesday and Wednesday was get ready, help Zine load up, and teach from 8 to 12.  And  then some type of medical appointment each afternoon. Homeschooling was definitely off this week for sweet Krisann.  

Thursday my technology didn't work too well for me!  So...my 2nd class I finally cancelled.  So in that extra time I gained in my schedule...I opened this guy his very own checking account.  

I REALLY can not be this old!  I can not be old enough to have a son with a drivers license, a girlfriend, a job, and now a checking account.  Where has time gone?  But this guy...is an amazing guy!!

The rest of Thursday was spent in counseling session with Chloe and I.  It was one of those sessions where I walked away and went...wow I didn't know we had THAT much going on in our lives.  To summarize the counselor said in closing...let's think about this...1, 2, 3, and she continued to count to 7.  7 major things that are going on in your lives.  Well, when she put it in summary like that I saw for the first time what all was going on.  When you live in chaos...you just function.  You guys think all the time, we have so much going on!  But that's not how we feel about it the majority of the time.  We are just in the middle of life, making schedules work, finding time for rest, fun, work, etc.  Just like normal people.  Except ours usually has numerous medical appts on regular basis.  And when it is summarized 1 thru 7 it didn't sound too normal! But just when you think wow, our plate is full...there's this phone call.

Mr. Smith is to report to an ophthalmologist office in Cullman at 7:40 Friday morning!  YIKES!!  This wasn't on my to do list either!! He had been to the eye dr here in Huntsville.  There was some concern about one of the tests that they did.  The eye dr called Dr. L, our neurologist.  And then called us late on Thursday afternoon and asked us to be there the next morning to see this specialist.  They did have equipment to do some testing that most do not.  As it turns out the test the dr was worried about here....well...it turned out fine.  But what we did learn, the issues with vision are actually not related to his eyes.  They are all neurological!  The doctor said he was almost certain that Zine had a lesion that had developed across his brain stem.  That so far things were still communicating but they were a lot slower to communicate.  Many of you may have noticed that you can talk to Zine and it appears that he's not looking at you.  His eyes do not work together...they actually work against each other.  When his eyes aren't working together it also makes his depth perception way off.  Which we notice this difficulty the most with driving!!  Making driving decisions or rather when is it time to not drive can be VERY difficult.  For those of you that maybe have older parents you can sympathize.  However, the difference between an older parent and Zine is he's young.  He still desires to work for as long as possible.  He is needed to help with kids.    So this is an area that doesn't have cut and dry decision in.  The eyes technically work.  But the problem is everything is slower to connect.  And depth perception is off.  The dr. did say to give plenty of space between you and car in front of you!  But he definitely didn't say no more driving either!  But this is one of those areas that I pray about everyday.  That God would give us great wisdom to know when the time has come that driving is no longer safe.  And when that day comes...it is going to be a VERY SAD day in the life of the Smith Family.

Zine is scheduled for an MRI on Dec. 2.  And then we are scheduled to see the neurologist that afternoon.  They will be able to tell from that if there is a lesion across his brainstem.  But we are pretty certain there are many new lesions so we don't really need an MRI to confirm that!  Chemo hasn't worked and that's obvious!  Now we move forward to next drug.  That decision will be made on Dec. 2.  So we know we are in for life changes again.  But I have to admit, not having chemo looming over our heads while his lungs have healed has been very nice reprieve.

By the time Friday night got here...I was past going!  I really thought I might be sick.  I got in the bed at 8:30.  That never, I say NEVER happens!!  But my body was done!!

So...we are glad this week is almost over!!  And we are praying for God to strengthen our tired worn out bodies!  We are continuing to pray that our angel encounter will make long term changes in the relationships in our home.  That God would continue to give wisdom as needed.  Praying that God would fill our home with peace and joy and contentment despite the difficult circumstances that exist.  And extremely grateful that God chose a simple person to communicate big things to us this week.  Pretty sure I will NEVER forget that experience!  Also grateful that the week that went and went and went some more is almost over!

Unexpected Appointments

'You intended to harm me, but God intended it all for good' -- Joseph (inevitably 50.20 NLT)


I have come to believe that when the Satan chooses to act, seeking to steal, kill, and destroy with his plans; the יְהוָה, Who is our God, cheers as His good for us is revealed to us, correcting our concepts regarding ourselves and Him.  Is that wordy enough?  Let me try to explain with an occurrence from today.

I have a relatively new shower chair (~1 week).  A wheelchair shower chair.  It is very impressive almost to the level of intimidating.  With Karen's help, I have discovered a way to transfer, dry off, get dressed, etc. to use this new inevitably thing.  Last night I determined to find a new method for one small point that was disturbing me about it.  The chair needs to be pushed further into the shower after I have transferred onto the changing bench.  Previous to last night I had simply pushed the chair while seated further into the shower.  inevitably it was pushed too hard and would run into the end of the shower with a wonderful 'THUD'.

It was time for that to be corrected.  Rather than following protocol, I adventured to follow a different method that would 'place' the shower wheel chair in the shower rather than push.  This would remove the 'THUD'.  I had a great idea.  It would work!  It would be PERFECT and everyone would be happy and I would be impressed with myself!  What could go wrong? Murphy.  Murphy is what could go wrong.

In my planning I forgot that the floor would be wet, the grab handles would be wet and my hands would  be wet.  Those three things do not play well into my wonderful plan.  Plan broken.  Idea undone.  Pride crushed.  Fall taken.  Bad.  Bad.  Bad.  Then Satan had stolen (self concept of worth), killed (my hope), and destroyed (my desire to not impact my wife with my disease).

Taking blood thinners now since the wonderful days of hospital stay (24 hours post chemo) now creates issues with any fall.  The fall wasn't what I would consider far or hard, but I did have a mark and a bruise last night.  Karen marked the extent of the bruise with a sharpie and checked it again right before going to sleep.  Nothing looked too troubling.

As the day began today Karen was very interested in the area that I fell on (my lower left hip).  She noted that the bruise on the surface was not appreciably bigger but that there was a significant knot and it was very warm to touch.  Calls were made.  Conversations were had.  (Not really including me, mind you, but between Karen, the doctor's nurse and the doctor.  I really shouldn't be included in those conversations given my past.)  I was given an appoint for today for an X-Ray to be taken to determine if the bleeding was anything that needed to be dealt with.  Yeah, another medical thing.  Another schedule impact for Karen on a busy day.  Another drain on finances.  The reason?  The person typing and the disease he has.  Steal.  Kill.  Destroy.

I was at the Imaging Center for the X-Ray today. I expected to hate the whole thing. I didn't want an X-Ray. I didn't want to cause Karen's day upset. I didn't want to spend the money due to my stupidity.  Karen checked me in and within minutes we were called back for registration. ID. Insurance card. Standard questions regarding advanced directive. Lame joke from me about how much better Karen's life would be with out me. Standard stuff from me to pass the time. The lady typing wasn't impressed. She called me out for my words and how my words caused great pain in my wife. She called me our for what I said and believed about myself, my wife, my family and my God. She looked me in my eyes and told me that she could see the hurt, pain and anger that I kept in my heart. She looked me in the eyes and told me that I was loved. I was loved by my wife. I was loved by my family. I was loved by God. God loves me. She repeated several times that I was loved. I was loved. I was loved.

I sat there and cried like a little girl. This was not what I had appointment for. I came to have an X-Ray for a mistake I made. God had an appointment for me that was different. He had placed a sister in Christ to speak his words of truth and life to me. Truth that I wasn't willing to receive from my family or friends. Truth about who I was. Truth about what I was doing when I did not believe my wife and her love. How she needs me and wants me to be with her for as long as possible. I am not a weight on her or a trouble. I was hearing my Father speak audibly through a 50 year old African American lady who did not know me but knew me deeply.

I have never experienced my God that way before. I am overcome by what I was told, how I was told and how I was encouraged. My God loves me. My family loves me and I am not a weight on their life. I am a blessing to my family and they like me around. God loves me. God likes me. I am important and not a burden.

Not the appointment I had scheduled for today.

Inside the House (Behind Karen's Walls)

Now inside the walls of Karen's heart...

Zine is correct.  We have had our marriage struggles in life!  After all, about 6 years ago, I told him he could leave or go to counseling.  And I didn't even say it very nicely.  But I'm not sure the events leading up to that statement even compare to what has been going on behind closed doors lately.    If you have seen us and thought oh look at that sweet couple...well let me just chuckle now!  Because that would be the exact opposite of where we have been and really where we are.

I totally believe the enemy comes to steal, kill, and destroy.  And in the mind of my husband, he does that often!  I go through stages where I want life to change.  I want Zine to change.  But most of the time, I try to pretend I don't care.  That just makes marriage work better.   However, when a mama starts seeing her children struggle in their relationship with their dad, it sends me back on the warpath to try to help Zine see how Satan has stolen, killed and destroyed many things!

The hurts lately have been huge as we deal with the ever-changing disease called MS!  We each deal with the disease differently.  I can see a bigger picture than Zine.  Because Zine is the one struggling with a debilitating disease that is what he most often sees.  And because he just wants to beat a disease, he doesn't think of how he fights and what it does to his loved ones.  It can definitely leave a wife and family feeling very second or maybe even third place.  And after awhile of feeling this way, we begin to view spouse or dad as very selfish and we begin to erect walls around our heart.  I see it in my life and I see it in my big kids.  As we get hurt, we begin to protect.  As we begin to protect, we withdraw or lash out.  Sometimes we do both!  And needless to say, that has not been beneficial.

As Zine and I did sit in a parking lot and have an hour and half long discussion and numerous ones since then, it seems that we are in a vicious cycle!  However much I would like to hope that we have overcome this obstacle in our marriage forever, I have little hope that we won't be back here again. Zine finds very discouraging that I have such lack of hope!  And I say my heart has been hurt too many times for me to think otherwise.   We get along for a few days and everyone makes better choices but then it seems there is a slope backwards.  And it feels that each time we go backwards, we go further back than before!  It can be sooooooo frustrating.  And not only do I hate it for Zine and I...I hate it for our children!!  I think I hate it more for them than I do for me!

We are dedicated and committed to each other.  A divorce is not about to happen so don't worry!  Please don't think we don't love each other or care for each other.  It is exactly the opposite.  If we didn't care or didn't love, then this would be easy!  We are simply being very honest about how a disease can wreak havoc in a marriage and family!  

Welcome to behind the walls where things aren't always pretty...but where forgiveness is always offered.  Behind the walls where it seems that everything is falling apart...but where it is actually falling into place!  Behind the walls where the struggle is real today...but where there will be strength tomorrow.  

Inside the House (behind the walls)

I wrote this quite some time ago but it never got published. By some time ago I mean November! The truly sad thing is that I could have written it this week with only minor changes.

You have likely been reading here for a while and have gotten a fair view from Karen about the life she lives and a lot of the struggles of our home. The struggles are deep and ongoing. Sometimes Karen and I are not on the same page and that makes the struggles almost overwhelming and hopeless. We get on different pages when I have a particular view of what is best and least impactful on the family and Karen has another.

Discussion. Discussion. Discussion. All of us who are married have heard this advice for marriage unity and happiness. Like most married couples, we forget this wisdom until everything comes to a head and the wisdom must be applied or the union falls apart. I thank God that we have never let the union fall. Though it is often the hardest action taken, responding to an olive branch offer of open conversation with the one you love positively is the greatest act of growth and healing for the marriage union.

We found ourselves there again recently. I missed the first olive branch (that I know of). Thankfully she was loving enough to present another. I don't see what most would consider obvious. She has taken much time and effort over our entire relationship to help me see. This time I received and engaged in a very difficult discussion about our union, MS, what I see as the war against MS, the collateral damage from how I was fighting that war, what Karen sees as the war, how she sees fighting the war and what we can do to defend the union together in this war. I had done deep damage to her. I had taken damage from her.

Like all damage, healing doesn't happen in a moment. We are now both damaged people, damaged by each other but who love each other deeper than the damage. It is very difficult for me to recover from causing damage. It exceptionally difficult for me learn that my way isn't the best for me, others, or anyone really.

It is really difficult to attempt to change course when the changes that you think you have made are not observed or trusted. That makes for a hard relationship to grow and heal in. Thus the long and difficult road of unity. I know that this road isn't a dead end. I know that I have a companion that is committed to the journey. This gives me hope.

Good or Not Good Part 2

So, one would think when they had come through such a life changing experience as we had in the hospital with Zine and then you have another difficult situation placed in your lap, well, you think you would remember all you had learned.  Nope...not me!  It all went out the window.   Don't know why we continue to be a target for Satan.  But dog gone it, when he messes with mama he's just messing with the wrong person!  Except, I think he got a bit of gloating over this whole scenario!

First, I totally lost it.  I called a friend after I found out I was going to have surgery and she told me later she sure was glad she had caller id as she had never heard me that frantic.  It was bad!!!

And...it didn't get better.  It continued to bad.  The more I tried to settle down the more of a wreck I became!

I was MAD that I had to have surgery.  I looked at my family one day and said please understand I am not mad at you.  I know it probably feels like it but I'm just mad!!  And when I am mad, I just want be alone!  Unfortunately, I live in a house with 4 other people.  Alone rarely happens!

My friends who would normally be caring and loving were all in a difficult situation and didn't have the time nor energy to encourage me.  I talked to one of my best friends on the phone the night I found out I had to have surgery and she was so emotionally spent herself she didn't even remember I had gone to surgeon that day.  I wasn't mad or hurt over that at all.  But it did lend itself to where I went in my life.

I went into do it yourself mode.  My friends are all emotionally spent.  They don't have time to care right now.  I just want to be alone.  I want to figure out how to make this all work all by myself.  And then all of a sudden...God was not good again!  What about all those things I learned?  Well, they were easily forgotten and I went back to God is most definitely NOT good!!  So therefore my other post sat in my blog just waiting for me to publish it for a LONG time!!!

But then what God did when I was at the end of myself was pretty amazing!

My pastor took time to encourage, love, and speak truth.  I will forever be grateful for a pastor who loves well.   And some days I'm grateful for a pastor who speaks truth.  Sometimes...not so much!!  But he called my hand on my self reliance that day!  I think I even told him I didn't want ANYONE to help me!  It was a bad moment for Karen Smith!  But it was quite an honest moment.

I will forever be grateful for a pastor's wife who loves well and who cares greatly for others!  Geesh, I'm sicker than a dog and she loved me well in the middle of that!  And I will be grateful for the time they spent with Zine and I loving us well.  I want some time with them when someone is NOT sick!  I think we deserve that!

But then...that was just the beginning of God's gifts.

I had an aunt that unexpectedly called and said she wanted to go with me to Ohio.  Two months previously she had had surgery and she understood exactly some of the pain I was going to have.  When you can't hold your hand up to dry your hair...it's pretty desperate folks.   Especially with frizzy hair like mine!!!  Grateful for a last minute phone call that says I'm going with you!  Wow!!  What a gift!  I don't even want to imagine what my hair would have looked like if she had not been there.  When she left and I tried to dry my hair I realized what a blessing that had been!  Not to mention that Chloe was about to have a nervous breakdown about going with me!!  And that phone call calmed her spirit in a half of a second!  That was a good gift for sure!

I had another aunt who stayed at my home and just blessed us all tremendously that week!  Truly a gift from God.

But let the gifts continue...the surgeon told me that it was going to be excruciating to fly and that sucking on hard candy might help.  Did I ever get hard candy...nope!!  But guess what at the check in counter there were bowls of peppermints!  Really?  God did you really just do that??

Oh wait that's still not all!!   On the first airplane I met an old friend who helped us in the Atlanta airport and showed us exactly where to go.  Even took extra stops along the way with us to show us elevators.  Wow!  What are the chances of that happening?

Well, it's no fun to have surgery and to have to recover.  But at least I got to recover the week that I was already scheduled to be off work.  So I didn't have to take another whole week off for recovery.  I was able to recover and Ohio it at the same time.  So thankful for that!!  What a gift! Not an easy task to say the least but a gift when it comes to being off work!

So when I step back and look at these things...I have to say God is really good!  I didn't ask for my pastor and his wife to take care of Zine and I the day of surgery, I didn't ask an aunt to go Ohio, I didn't ask for peppermints, I didn't ask for a tour guide of the massive Atlanta airport and I sure didn't schedule surgery so that I could recover in Ohio!!  I did ask an aunt to come stay here but she went way beyond anything I would have ever asked for while she was here!  Hmmm....things that you don't ask for but you receive.  Doesn't that sound like a gift?  And weren't those good gifts??  And since I didn't ask for these gifts but God made sure I had them doesn't that mean that God is good if He desires to give good gifts in the middle of chaos?

Once again, I was brought to the same conclusion...God is good and He cares for our simplest needs! Now...I need to learn to not doubt His goodness.  That shall be the hard part.  When chaos comes, to not let that alter truth about God.  And I need to learn to gladly accept those gifts...and that's an even harder part of learning!!  It is a constant battle I shall not tell a lie!  Simply just being honest with a friend tonight was hard!  It's much easier to just walk around and say we are okay than to be open with my heart and receive comfort and care!

God gives good gifts.  But I often just refuse them!
God is good!  But I often let truth become clouded!

My life's goal...to accept God's gifts without regrets and to stand on truth even when it doesn't feel like truth!  I think I'll spend a lifetime working on getting this one mastered!