Cared For Well

There is much to be said for having doctors and nurses that truly care about you.  It just makes for a much more pleasant experience when you feel cared for.  And despite the many medical stresses, we have been blessed with wonderful medical care!!

Zine's neurologist in Cullman is the most compassionate, tender hearted doctor I have ever been with.   This past visit, Dr. L came in and pulled up a chair beside Zine and just said I'm sorry!  Tell me about it!  And he just sat for awhile with Zine and listened.  He nodded his head but was super super sad with us. We have had more than one experience with Dr. L where we have seen his compassion come shining through.  He regularly asks, how's your marriage?  He will ask Karen how are you holding up through all this.  Just filled with compassion!  And for that we will forever be grateful.

At The Cancer Center we have yet to meet a nurse that is having a bad day!  They are all so friendly and upbeat.  We don't see them enough to develop a relationship with them but while we are in their care we are cared for well.

And then...there's Angela.  Angela has stolen our hearts!  I never will forget the day we spent an ENTIRE day in the office with her.  She watched us struggle through a VERY difficult decision.  She even said we could leave the building go across the street and have a drink with no condemnation whatsoever!  We just had to come back with a decision made!  She has encouraged Zine to look beyond how he has done things in the past to how he can do new things today.  She has given him practical ideas and really spoken to his self condemnation.  She has loved us both well!  Even when I feel a bit panic about Zine having a staph infection...Angela is as calm as a cucumber!  Angela is a blessing in our lives.  She makes getting cath tubes changed every month a bit more pleasant experience.  And we always look forward to our visits with her.   For some reason, today, Angela has been on my heart.  So Angela, I've prayed for you on and off all day today!  So maybe you all reading will join me in praying that whatever tomorrow brings, that Angela would be blessed over and over again! We would love for sweet Angela to have the best day ever tomorrow!

Don't get me wrong...Zine hates his cath!  6 months later he is finally not terrified of it!  He would rather not go see Angela every  month to get tubes changed out.  But she makes such an unpleasant experience much much better!

When we are feeling discouraged, we can always look at how these people make a positive difference in our lives!  And we can always be grateful for the impact each of them play in our lives.  And as our prayer is always, may we make a difference for Jesus in their lives and may they see us live out our faith in the most difficult of situations.

MDA Camp

To take a minute to focus on something completely different...MDA camp!  If you've ever donated money to my requests for MDA or if you've ever joined me in an MDA walk you have helped send children like Chloe to camp!


Last Sunday I made a 4 hour trip and took Chloe and dropped her off at MDA camp!  She loves MDA camp!!  It is the most amazing week for her.  This year I think the heat just about got the best of her though!!

She gets to be with other kids like her.  She also gets to see other kids whose diseases are worse than hers.   Each camper has their own individual counselor!  Chloe has been blessed with the same counselor since her first year.  She and Laura are a great pair!  I have thanked God numerous times for the wisdom on the MDA staff to put Laura and Chloe together!  

And then there is this special counselor AJ!  Chloe loves AJ!  Not sure I’ve met another young man who will show up at hospitals, doctors appointments, events just to be a part of the lives of these special kids!  

And then there’s Keesha!  Chloe’s good friend at camp!  They get to sleep in the same L shape!  And even in the few minutes I watched these two girls interact I saw conversation happen that doesn’t happen often with Chloe!  I would love to be a little fly on the wall sometimes and hear their talks!  Keesha and Chloe both walk but both use a wheelchair. Keisha loves make up.  Chloe does not!  But Keesha was more than happy to help Chloe with her make up one night!  :o)  After all...isn't that what girlfriends do??   But a bond they do share and that is they each have muscular dystrophy.  And they each get each other better than most people ever will understand.

But I think mostly at camp, they are like one big family!  Big girls, little girls, big boy, little boys…they are just a family and they are understood by each other more so than at any other point in their lives!  At MDA camp, there’s not people staring at you like you’re crazy to be in your wheelchair one minute and out the next time!  And no one thinks a miracle just occurred when you get out of your wheelchair to go down the water slide but back in your chair to go back to your cabin.  People there get this concept! I love this about MDA camp!  For once, these kids are in a place with others just like them!  So grateful for this special week in the lives of these kids with muscular dystrophy.  

As a mom one of the most difficult things for me is when people say your child looks so healthy!  Or things like people who see your child playing outside and think she’s surely getting stronger and won’t need her wheelchair anymore.  Sometimes these people will even comment about it.  I just want to say, instead of making wild haired assumptions about my child…just ask!  How’s Chloe doing? Or educate yourself on Muscular Dystrophy.  I know many times people mean well when they communicate such things.  But for me as a parent, I often think, uuughhh they don’t understand or uuuughhh they aren’t very observant or uuughhhh it’s none of their business or uuughhhh maybe she is better and we’re crazy for going to the doctors a gazillion times and we’re also crazy that she takes so much medicine and we should just stop it all!  And probably….it depends on what mood I’m in as to which uuughhhh I think!  So maybe the reality is…I can’t be pleased sometimes!

But in reality, what others get to see if the best of the best.  Typically they don't get to see the girl whose legs are killing her from pain.  After all...who wants to be a whip in front of other people?  These kids just want to be normal.  Typically others don't get to see Chloe have her shaking episodes.  But I have video tape to prove I don't make it up!  Typically people don't see me wash, dry, and fix her hair because her shoulders get worn out.  Typically people don't see her try to pick up a gallon of milk and pour herself a cup.  There's lots of things that people don't see until you live with a child with MD.  
 However, with all the excitement that surrounds such an event as MDA camp, I still have a hard time saying goodbye for a week.  I know she is well taken care of.  Breathing machines, wheelchairs, fatigue, pain, loads of medicine…it’s not intimidating to these folks there!  I also enjoy a reprieve from mom duty as it relates to having such a special girl!  I’m not responsible for washing, drying, and straightening hair.  I’m not responsible for medicine.  I’m not responsible for her emotional needs.  This week provides me many breaks.  So why is it hard to leave her?  I don’t rightfully know.  But it definitely does something in me!

I am always reminded when I go to camp that we truly are blessed.  Chloe has not progressed as quickly as some boys do and for that we are grateful!  Now compare Chloe to girls and she is much more significantly affected than most other girls with her disease.  But we will just choose to keep comparing her to boys!  After all, boys are the only ones that are supposed to have her disease!

I'm grateful for MDA camp and the week Chloe gets to be normal!  I'm grateful for grown men and women who give a week of their time to be counselors!  I'm grateful she gets to go...but I'm grateful that I have her back at home with me tonight!

What's Wrong With Me?

This blog entry became a soul searching entry!  It has caused me to think and think and search and search.  Don't read it if you're going to judge me!  And don't read it unless you want to hear some of the inner thoughts in my head.  And...please don't think I'm writing about you!  I promise I am not!!

I have had several good weeks emotionally.  And then out of nowhere, bam, I am knocked to my knees...literally!  Back to that inner turmoil that consumes.  Nothing I can put my finger on and say this is what is wrong.  Just a general uncontrolled totally consuming turmoil. 

When I find myself here, I am constantly trying to figure out what has caused it, why the turmoil, what do I need to do to fix it.

I think the thing I keep coming back to is that alone feeling!!  When I first dissect that alone feeling, the things that come to my mind can seem very selfish.  Things such as I have no close friends, I am not connected, no one understands, etc.   I read blogs like this blog entry on Why Women Need Girlfriends and I all of a sudden can so identify with this blog!  When my teenagers were preschoolers I had play dates and close friends!  However as they have grown up, my friends dwindled or at least became much less involved with each other.  Our lives became busy and we let those relationships slip past us.  A couple of my closest friends moved away as well.

Fast forward to my current situation, I have become more and more introverted and withdrawn just due to the circumstances of life.  Then I think let's be real, people are busy.  For many of our chuch people, I live on the opposite side of town or "Egyptland" as it has been tagged.  So doing things together or being with people becomes difficult.  It's hard for Zine to be out and about so that means all entertaining has to be done in our home.  And then for me that gets tiresome.  So it's simply easier to stay at home and not socialize very much.  And in November when life first fell apart, people were all over here on my side of town bringing meals, visiting, praying, etc. and they truly are part of the reason we were able to keep going.  But as Zine said at the time, this is the long haul Karen.  This battle is new and people are interested.  Give it few months and it will slow down and be just us again.  There was much truth to that.  People will still bring us dinners if we desired.  But it felt to me like it was a hassle.  People stopped coming to visit and rather it was a duty to drop a meal off.  I will let the meal train start back when we go for our next round of chemo because that is helpful during that time.  But sometimes meals were more about connecting than eating.   Oh, we have people tell us all the time how they pray for us daily.  Sometimes I want to say, just stop praying!  I don't even care anymore!   Can you all just tell that I am in a MAJOR funk?!

In that blog entry I mentioned above there's the story of some girlfriends who take beach trips together.  And I know ladies who do that.  But I've never had that type of relationship with anyone other than Zine!!  There's another example of the lady who lost her husband.  The article talks about her friends who knew just what to do and blessed her tremendously.  I just cried when I read that article.  I don't think I have friends that could come in my house and know exactly what to do or know me well enough to write my spouse's obituary!  That is a totally scary overwhelming thought that one day I might find myself in that situation.  You think about these things when you are 70 and 80.  Not 40!  The thought of losing my spouse is a thought that I contemplate often.  As our emotional cups overflow, the need for friends becomes very real.  Oh, we have LOTS of people who would minister to us.  But ministering to us and having friends are two completely different things!  But part of that friendship issue is my problem... I don't allow people to know me and my family.  I have safely erected castle walls around us!  They are great protection!!

And I'm certain that since November, I have withdrawn more and more into my little turtle shell!  Being with people causes me much anxiety.  It's like I have totally forgotten how to relate to people.  I'm not even sure I know how to carry on conversations anymore!  So...I'm grateful that some people are talkers and can talk to a brick wall!  :-)  That definitely makes conversation easier!!  Go to church....that is one thing I often make myself do.  I simply want to go to church service, sing and worship, hear sermon, and come home.  I definitely do NOT want to be going to some Sunday School class and talking nor some ladies connecting class right now!   So...what is wrong with me?  Blogs like this one evokes that desire for friends.  However, I look at life and come up with a gazillion excuses why friendships just won't work out right now.  Then I listen to a couple of friends who say you just need to learn to trust people.  And I mix all these together in a mixing bowl and don't even know what's supposed to come out!  For that matter, I don't even know what I want.  What is wrong with me seems to come to my mind regularly lately.  And I'm not sure...

I simply  know my insides are all in turmoil.  I also know that I have stepped way outside my comfort zone this week.  I invited a sweet lady to hang out with me the day of Krisann's bday.  It was very comfortable and friendly.  I truly enjoyed the company and conversation.  I would have never thought to do that prior to the past couple of weeks!  Maybe God will open my eyes to more opportunities like that!  And maybe I will step out of my comfort spot more often.  Second thing I did outside my current comfort zone was I went to one of those ladies connecting prayer groups!  Didn't share any requests, but I went!  A tiny step forward...maybe??!  Third thing I did outside my current comfort zone was I also spent an entire day with another lady and her girls this week.  I even rode in the same car together for almost 2 hours over and 2 hours back and several hours letting our girls play and picnic together.  That was WAY out of my comfort zone.  But I did it.  And I survived!  And it was fun!  It would have been more fun if I could have taken my castle walls down and totally been myself! If I could find that fun loving girl I have always been and resurrect her somehow!  But...I'm not sure I know how to do that anymore!  They may be permanent walls!  And maybe life has changed my entire personality.  Maybe I'm just in a funk and I'm going to wake up to a new perspective tomorrow.  I don't have a clue!

I do know one thing for certain...next week, I have a big counseling session with some sweet ladies where we are going to learn how to break down Karen's castle walls and hopefully take some steps to help me become friendly again!  And I do know that it's not until Thursday, and my insides are quite the disaster already!  I have no idea what is to going to come from that counseling session.  So I am having to trust really hard that God is out to prosper me and not to harm me!  I'm not sure what God is up to in my life but I'm afraid He is at work!  And I'm not sure I like it!  I personally think I like hiding better!

I've got to learn in the blogging world how to give credit for pictures that aren't mine.  But I borrowed this picture from another blog post that I thought was a very interesting and right on target for how we hide.  You can read the post about Turtle Shells here.

Father's Day

Father's Day...

A Time to love on your dad!

A Time to remember your dad!

A Time to thank your dad for all he does!

But what happens when all the things daddies do at home is slowly being taken away? 
Well, I think you focus on the things you can do not the things you can't.

What happens when your baby girl says..."Daddy doesn't ever believe he is special!  But tomorrow, we are going to rock it!"
Well...you laugh and then you cry!

What happens when your baby girl prays..."Please take my daddy's MS away but God I'm scared you won't."
Well....I guess you keep on believing. Believing God for miracles!

Sometimes I wonder how much Krisann understands and how much she knows.  But  then ever once in awhile she will say things like she did tonight and she gives us glimpses into what she knows.  I am always thankful for those glimpses!

I was talking with Conner this week and I shared with him that although I was very sad of the things we had lost because of MS, I was also very grateful for what he and Chloe had learned through this process and how God had used it to make them look at life differently!

On this Father's Day...

We are remembering that even in the midst of MS, God is using Zine to teach our children what it means to persevere under trial!   That's a life lesson everyone needs to understand and Zine Smith is living that out right before our own eyes! 

We will cry over the father roles that have been lost.


We will laugh about the time that Zine almost rolled down the stairs in his wheelchair!  Conner and Chloe always laugh when they think of that!  I sure hate I missed that excursion!

We will keep on believing God for a miracle!

We most definitely love you Zine Smith!

MS and Marriage

First let me make sure you know we both (Zine and I) added input to this entry before publishing.  So no worries, we are well aware of what is in this post before you are!  :o)   It's been edited more times than any post has been edited I'm sure!!  

When difficult situations arise, our marriages become an open target.  For some reason, when we are stressed, who gets the brunt of our stress...our mates!!!  Who are we the crabbiest with...our mates!  Who do we have absolutely no patience with...our mates!  So no wonder when difficult situations arise, a side problem is the difficult place it can leave a marriage.

So yes, the stress has taken a toll in our marriage.  But I think it just shows we are human!  And we are not perfect!

For me (Zine),  the losses in regards to MS have led me to isolation.  My logic has been and still is some, that no one would desire to experience pain of loss.  My loss.  That logic seems sound, caring, loving, sacrificial even.  The truth is that logic is a terrible lie that I battle on a daily basis.  Sometimes hourly basis!  That lie isolates me from others including Karen.  Another marriage struggle we have experienced is that I often have had no emotional capacity to support Karen.  Which I know leaves her feeling even further isolated.  For me, learning to live with someone who desires to live with me in my pain is a difficult lesson.  (Differential Equations was easier.)  

For me (Karen), I have felt pushed aside, disrespected, unappreciated, not valued on way more times than I care to count! I have struggled with feeling alone a lot!  And even in marriage, it often feels very alone.  It feels we are fighting the same battle but we're doing it alone. There have been moments when marriage has been nothing but pure sweetness through some of these days.  But others, I am just glad that I made it through the day...(without killing him)!


We have been at this MS battle for 5 years now, so we've had lots of practice in salvaging a marriage. 
We've grieved a lot of things already that God designed for marriage.   We've had lots of counseling and are in need of a lot more I'm sure!  But there is one thing that keeps coming to my mind as it relates to marriage.  Often we think our spouses should be our God.  Or at least I (Karen) feel that way.  "I have a need so buddy you are supposed to meet it.  You are my husband after all!"  But what happens when my spouse is hurting deeply and literally has nothing to give... I feel rejection, disrespect, unimportant, etc.  In return, it causes me to become defensive and angry because my spouse is not meeting my needs!  Sounds a bit selfish when I say it like that!!  But what God keeps telling me is that Zine Smith is not supposed to be God in my life. Amazing to me how I continually get that mixed up and place that huge amount of stress on Zine to be my ultimate need meeter.

We are both learning that we need Jesus in our lives, but we also need other people in our lives too.  We got married and all of a sudden didn't need anyone else.  Our love would be all we need to carry us through.  I'm sure we are not the only newly married couple who believed that thought process!!  If you knew us in our earlier years, we did EVERYTHING together.  We were inseparable.  Even after two children, we went and did everything together!  And we didn't need anyone to help us do anything.  We took care of everything ourselves!!  So a hard fact for us to learn, but we are VERY slowly learning, we need other people walking beside each of us so that we have safe people to share our hearts with and to help bear our burden.  This has been a challenge for both of us.  Sharing our true hearts with others is not an easy task for either of us.  Stretched way beyond our comfort zones for sure when we share our intimate thoughts!

We hope that sharing just a tid bit of our married life with you, you will understand that whatever stressful situation you find yourself in, please know it will affect your marriage!!  You shall not be alone in that boat!  But be encouraged, if we can continue to be married and live under one roof...you can too!!  We even like each other some days!  Our marriage relationship does look a lot different than we expected but that's okay!  We might have had unrealistic expectations anyway!!  So if you're struggling in your marriage, ask God to show you what lies you are believing about your relationship or your spouse.  Ask God to give you the desire to love your spouse well despite the hurt and pain in your own heart!  And in those places of your heart that you feel your spouse needs to come to you and apologize, just give those hurts to God and ask Him to heal them!  Don't hold them over your spouse's head!  God has the greatest power to bring healing in your heart!  And He is big enough to do just that!  We've watched Him do that in our lives.

But just to clarify...we would much rather focus on these carefree days of our lives...

than these chemo ridden, cath changing, MS raging days!

Heartbroken and Held

Now that I can think a bit more clearly...I will just give you some further insight into how doctors know that Zine's disease has progressed and what is on the horizon.

Depression--Depression has been a HUGE battle at our home.  Continues to be a HUGE battle at our home.  So we are adding another anti depressant that works differently than one we are currently taking.  Even this afternoon as Zine came in from work, the tears were flowing and overwhelmed was an understatement for how he felt!   He summarized some statements for where he was emotionally.  I am not appreciated at work.  There are emotional struggles in our home because of me.  There are looming financial concerns because of me and my ability to work. Nothing is fun anymore.  Those things that I think would be fun are too difficult to obtain or I wouldn't be able to do them anyway.  I think he had a couple more.  He said they are not perception they are facts!  I quickly agreed that some were facts!  But that struggles and responsibility were not to be laid in his lap!  With MS, he has done nothing to obtain and there is nothing more he can do to get rid of it.  And sickness exists because we live in a sinful fallen world.  So if there needed to be a blame game going on, it needed to be sat squarely in Satan's lap!  But when depression has a hold on you, it is so hard to see this!  So, I am definitely praying that the new med will work in regards to depression!  My heart is broken for him...my sweet love needs a break!!  Dog gone it!!  Enough is enough...that's what I think!!

Feelings--Not feelings of emotional feelings but the ability to use your sense of touch-Zine has lost all feeling on the left side from hips down for awhile.  This time, the lack of feeling consumed both legs all the way up to chest area.  MS patients can cut themselves and not know it...burn themselves and not know it...all because they can't feel like we feel!  We have a scald protector in our shower so the water can't get too hot!  We don't put sharp knives in the sink to be washed they are placed carefully to the side. 

Spastisticy--That means your muscles are very tight!  They are spastic!!  Zine can no longer bend his left leg at all.  He takes medicine for this constantly.  But we increased the dosage of his medicine in this area.  However, the doctor explained that Zine was to a point now that if we lowered the spasticisty that when his legs lose that spasticity, he would no longer be able to hold his weight at all because then we would see how weak he really was.  So in reality, spasticity is a blessing right now.  Those tight muscles that won't bend legs can be a blessing!!  Just imagine your knees won't bend at all.  And to make them bend, you literally have to have your hands to bend them down just so you can sit!  Yep...that's Zine.  And when you fall, if your legs won't bend it is near impossible to get up out of the floor.  When he falls, he is normally like a row of bricks...that body doesn't move at all sometimes!  Oh wait, I bet you climb in the bed each night and never think a thing about climbing in.  For Zine to get in the bed is a horrible difficult process.  Rolling over is near impossible!  Yep, we definitely don't appreciate some things in life until we see someone we love struggle do a task that we think nothing about!

Weakness--In the neurological exam, it was very evident that the disease now affected both sides.  To be able to do something one month, then three months later not be able to do some of those things is very discouraging!

Eyes--Zine's left eye has always been his bad eye.  However, this time his good eye is affected as well.  Yet another realization that the disease continues to wreak havoc in his body!  Have you ever had a conversation with someone and they are focused on you and what you were saying but yet their eyes were not looking at you??  It's kinda weird!  When it first started, I would say Zine look at me.  He would respond I am!  I didn't believe him at first but now I do!!  He's intent but his eyes just don't work together to look in the direction they need to!

The question that they asked us over and over again, is swallowing getting difficult.  So...I guess that means I know what symptom is next on the horizon!! 

So...it was exceptionally obvious that things were worse.  There was no MRI needed to show that!  The doctors were even able to say certain things were caused by lesions in certain places!

We were heartbroken but yet prepared to be heartbroken!  Prepared is always better than caught off guard, in my opinion!  We definitely do not wish to walk the path laid out before us.  We still believe that God is our only hope and that at any moment He can bring healing!  But in the meantime, we still have to make decisions and move forward with earthly decisions.  And sometimes these decisions come with a great risk and a great cost!  I love this song by Casting Crowns Just Be Held. Sometimes we need to be held!  Sometimes it's God who holds us.  Sometimes it's people who wrap their arms around us and love us.  And we need both!  There's also a line in this song that I just keep coming back to...Your world is not falling apart, it's falling into place!  I sure am ready to see it fall into place and feel like it is NOT falling apart.

Sad Facts

I know many of you have probably been on my Facebook page a gazillion times looking for an update.  If there is something one must know about me, I am a processor.  I have to take the facts and I have to hang onto every word and evaluate each word in every light possible.  Often I have to get through this before I can adequately express the facts.  I can say with utmost confidence I have still not processed all the facts we learned yesterday.  I think it is going to take a few days.  However, because you are so sweet to carry us in prayer through these difficult seasons, I do want to try to go ahead and give an update.  The facts and thoughts are still racing around in my head as they were even most of the night.  Zine, well, nothing interferes with his sleep! Our emotions are still definitely very tender and will probably be so for a few days.

The oncologist thought the chemo wasn't working.  We could see some signs that it wasn't working.  However, we see things very gradually over several months.  When we go to the neurologist and they do their assessments, then the regression comes into full light and you can see the major differences even in three months.  The difference in three months is absolutely heartbreaking.  We both saw the differences come glaring out at us and we both felt VERY sad.

Dr. L came in the room very somber.  He had already read the facts and seen the nurse practitioner exam notes.  He knew. And he was sad.  All of the visits, he has said, I am going to make you feel better.  This time, he said, I'm sorry.  I'm doing everything I know to do.  And it's not working.  Quite a somber place for a doctor to go.  But very very obvious, it is not working.

The most pressing issue was to continue with chemo, to change chemos (there are 2 other drugs we can try but they all operate similar), or to discontinue chemo all together.  One thing that became very obvious, when you discontinue chemo all together it feels like you are quitting.  As the wife, I can step back and see that very differently.  But I totally understand and can grasp why it feels like quitting.  So we will just say, there wasn't a peace about doing nothing.  So the next question is to change or not to change. After some discussion, we decided we would take one more chemo treatment.  One can always have a hope that Zine is a "late bloomer".  Maybe his body is just slower to respond to the drug that usual.  So, in an effort to keep fighting we will take one more chemo round with current medication.  We will do that the first part of August and then we meet back with the neurologist on Aug. 19.  At that time, the game plan changes.  We will be trying a different drug.  We do still have many questions about the drug but we have a plan and know what the next battle line will be.

We also know that unless God chooses to heal, this disease is going to continue to run rampant in his body.  There is no real hope that any of these other two drugs will make a difference.  The one we are taking had the best chance of making a difference and it hasn't.  The doctor doesn't have any high expectations at all but is definitely willing to keep trying to fight this disease and can hope that maybe possibly one might make a difference.  But a difference is not expected.  And for that we are sad.  Dr. L is sad.  We were sad together.  I don't think there's ever been a heavier spirit in our room.  But, if we could ever feel love and compassion, we felt it last night.  He definitely shared our heartache and burden last night!

I asked someone last night if they would just wrinkle their nose and make it all go away.  They quickly responded they couldn't do that but they would do anything they could do to make it better.  My response was I know you can't.  The only One who can has chosen not to.  And for that I don't understand.  And because of that sometimes keeping my faith is difficult.  But at the same moment, the flip side of the coin is that God is our only hope.    So when He is our only hope, how could we ever walk away?  So I think as far as our faith, it will continue to wrestle with God's goodness and God's plans for our lives.  We've always loved the verse that His plans are to prosper and not to harm us, to bring us a hope and a future.  We get the hope and a future--that's heaven!  But what about here on earth...sometimes it feels like we aren't prospering and that MS is definitely harming us.  But we also totally believe verses that say God's grace is sufficient and in our weakness His strength is made perfect.  We also believe that in Christ, we can do all things.  Sometimes we feel like we can't do this, we deep down know that we will get through these challenges.

We did make four other medicine changes yesterday.  Our medicine container is full already, I'm afraid we might have to buy a new one!  I can definitely share some more medical details with you but I think for now, you have the picture of where we are.  And I think that's about all I can handle to write right now.  I will post some more details later.  But thank you SOOO much for being our prayer partners yesterday, we needed them!

Faith versus Fear

At our last visit with the oncologist, it was determined that the chemo is not doing the job we had hoped for.  Tomorrow, we meet with the neurologist, and we are expecting to determine the next step.  And I wonder why my head hurts???!!

In November, we were not prepared for life to come undone!  Tomorrow, we are prepared that our current life will come undone yet again!!  In November, we were given 3 options!  Plan A seems to be a no go.  Plan B or Plan C.  Or neither.  Tough tough decisions to make.

Terribly afraid.  Future unknown.  Terribly afraid.  Sad hearts.  Terribly afraid.  Wishful thoughts of a different life.   Did I say terribly afraid??  So then I ask myself what is there to be afraid of...

I'm afraid of...
another medicine that doesn't work
children saying goodbye to a dad way too early
maintaining lifestyle as we have known it
a healing that never comes
how much effort it takes to face some days and some appointments
the emotional battle that rages in our home on numerous fronts

Just to name a few. 

In those moments, I am reminded of this Bible verse that I just love in the Message version.  Hebrews 13:6..."Since God assured us, 'I'll never let you down, never walk off and leave you,' we can boldly quote, God is there, ready to help; I'm fearless no matter what.  Who or what can get to me?"  I quote this version often!!  I spent an hour or longer making this picture to help me remember that my faith needs to be bigger than my fear.

Let's be real folks...sometimes my fear is bigger than my faith.  The picture should look like this a lot of the times.

When those moments come, I simply have to take some time to regroup my thoughts.  I have to remind myself that if I look back over the past few years, I can see God at work.  If you told me five years ago we would have been through everything we have been through in the past eight months I would have told you there was NO way we could survive that.  But God's grace is sufficient for those moments!!  So why should my faith waver??  I think the answer is I'm human!  Oh how I would LOVE to go through these circumstances and never feel the need to....

But, I'd surely be leading you astray to make you think I always live in that place of great faith.  Today I have been consumed with that thought...I need more faith!  My fear has been bigger than my faith numerous times!   Think if I put a hash tag in a blog post it would read #faithversusfear #constantstruggle.

Reminding myself that God already knows the next step.  With a 3:45 appointment I fear tomorrow will be a LONG day of a #constantstruggle.   Worse than that, I fear tonight will be a LONG night of no sleep!  #faithversusfear...needing faith to win!

Ohio Report

This appt was very different for us in Ohio.  We didn't see a slew of doctors like we normally do.  We had a very lengthy visit with just one--the neurologist.   He himself moved our appt up a day.  And I know without a shadow of doubt, he moved us so that he could spend more time with us.   It was very evident he had done a lot of homework since seeing us the first time! And he spent ALOT of time with us.

Since seeing him the first time, we tried some medicine with Chloe that made all the difference in the world in how she felt for about a week or two.  Then she began to have horrible side effects emotionally from the drug.  So for the past two and half months, we have battled a tremendous emotional battle.  It has not been fun for anyone involved!  But for a week or two early on, it was so fun to see Chloe feel good.  I think it was the first time we ever have seen her feel good!  But the feel good was not worth the emotional battle we have struggled to regain control over!

Last time, he did a ton of testing.  He had the results of all those tests and despite what he wanted, he was unable to draw any other diagnosis.  He had so hoped he could uncover something else that would make more sense.  But...he didn't! So that leaves us back in the place we started...several different problems and can't pinpoint anything that would tie them all together. 

So this visit, we began a completely different conversation and that was how to handle problems in the long term.  There was no let's try this drug for three months and see if we can make her feel better.  It was simple and matter of fact, what can we do that is safe for a long term situation to help Chloe not hurt.  That seems to be the goal..no pain!!  The disease is what it is.  If you compare Chloe to boys, she is stronger than boys her age.  But if you compare her to other manifesting carriers, she unfortunately is way more advanced than most all females he knows.  He still hasn't given us a long term outlook!  But I think his first mission is to get Chloe out of pain.  Which, if he is successful, will be a huge blessing!  While, his input is invaluable and brings much hope of a Chloe without pain, it was difficult and sad that we have to approach things from a "long term" outlook.  Chloe and I both felt down when we left!

This doctor does believe her shaking episodes might possibly be related to the high dose of a medicine she is taking.  Unfortunately at this time, she can't live without that!  So...we are going to work at some other avenues of treating her pain.  I really liked some of his ideas!  Some ideas for trying things that no one has ever mentioned before.  And I think he has some incredible reasons for trying them!  So...for that I'm excited.  We do have to move slowly as to try not to totally disrupt her emotionally again.  We definitely do not want repeats of the past few months! And he is very cautious of treating the emotional as well as the physical which is a blessing as well.  Over the next few months, we will do a lot of communicating via email about how she is handling new medicine and what results we are seeing.  So that means I am in study mode.  Watching all details and making notes of them!!!

Next time we go, (in October), there will be a slew of doctors and some more testing.  Think we will see a pulmonary doctor next time with a good number of pulmonary testing.  I think the good news is they have not totally bombarded us with everything at once.  But...for a trip I thought I was going to make one time...well...it's becoming routine!!

This trip was easier because everything wasn't new!  We were much more comfortable.  We knew where to go!  We were more at home at the Ronald McDonald House.  We even took some time to make some thank you cards for some volunteers there!  And we had Krisann.  She was probably the biggest blessing!  She attracts attention where ever she goes!!  And there was no sitting in the room being bored with her around.  She would have none of that.   The idea to make thank you notes was a God thing.  He just told me to do it and we did it!  And what a blessing it was for us and for the large group of volunteers that day!  So...we will go more prepared next time for such adventures.  And Chloe has some ideas for putting together some "not lame" craft kits for them.  So we talked to them about that before leaving.  So between now and October, Chloe has some work to do to! 

One of my prayers has been that throughout our medical adventures, that we would allow Christ to shine through!  We have had PLENTY of opportunity to minister to others right where He has placed us in waiting rooms, doctors offices, with unbelieving doctors, struggling nurses, etc.  And now on our newest adventure in Ohio, He is going to show us ways we can bless others in a new place!