Good or Not Good Part 1

I am blessed to have a friend that is a counselor.  And she has walked this road of MS with Zine and I for years!  When Zine's MS first started showing up and we were going through the diagnosis days,  she walked closely with us.  At one point in those early days, I looked at Zine and said words I thought I would never say.  I looked at him and said we are done!  Pack your bags and leave OR go to counseling.  He hated me and I hated him.  And that was an understatement. .For about a year Zine and I spent many hours in the counselor's office!  And we did many hard and difficult things!  But we also made huge progress in our marriage.  Today we like each other...sometimes!!   Well, most of the time.  But that just makes us normal right?!

Fast forward 5 years, and I find myself in her office again.  This time it's a different scenario.  This time it is because I need to care for myself.  One night she and I were talking on the phone and she said Karen, I think you are struggling with the issue of is God a good God!  I didn't respond at the time.  But I think I was almost offended.  I have been a Christian for years.  I know God is good!  That's what I've always been taught.  But then when we hung up, and I begin to think about all she had said, I realized she was right!  

Why would God let Zine and I struggle in our marriage several years ago?  Why would God give us a child with MD and a husband with MS?  Why is this MS not responding to medication?  Why would God allow my mom have Alzheimer's disease?  Why has God allowed MS to rob our fun loving spirits?  A good God would definitely not give those things to you.  God is good and He gives good gifts!  But now, these diseases have entered our world and it sure doesn't seem like God is good!  And this definitely doesn't feel like good gifts in our lives!  So I think my friend and counselor was very wise in her assessment of where I was spiritually.  

Fast forward again to a few weeks (months now that I am actually going to publish this post!) ago.  We have just spent a week in the hospital.  I literally had stood by Zine's bed and said my goodbyes!  The nurse and I both thought his time here was short!  But in that hour and half of watching Zine struggle and then all of a sudden just begin to turn a corner was truly an amazing experience.  There are many, many things about that night that I don't think I will ever share verbally!  I remember every detail vividly!  And I wouldn't trade them for the world!  But as I pleaded with God that He not take Zine on Chloe's birthday, and then I watched God work a miracle in our lives...that was a good gift!!  12 hours later the same nurse who held my hand and cared so tenderly for me, entered our room and said you are out of the woods tonight!  You don't need me!  She was the charge nurse and she only took patients that are considered critical!  The following Sunday, Zine and I sat on our love seat together and a friend face timed the service to us.  During that Sunday, I heard this song for the first time!   I sat and cried!  

You see through all these years, I didn't see God as good because I refused His good gifts.  But that entire hospital experience really opened my eyes to exactly what God has done for us and is doing for us.  And for the first time ever, I was on the receiving end of God's good gifts with a willing heart!  And He used His people to accomplish His purpose in my life.  In my desperate state of life, God provided!  And for the first time EVER, I didn't feel guilty!  I didn't push His good gifts away, I was so very thankful!  Never once did I say I feel so bad someone is doing this for us.  I simply uttered many, many thank yous to Jesus!!  And I felt loved by Him and by others!  

So as I have struggled through many things this is one that God has finally given me a glimpse into!   God is good!  He is a good Father.  And He will continually to call me deeper deeper into His love!  Oh, how I hope I can go deeper in His love easier than I have been known for doing in the past!

FOOTNOTE:  The reason this post took me so long to post was not long after I wrote this, I woke up one morning and discovered my mouth wouldn't open very well and it hurt.  Which led me down a quick road to surgery.  And guess what...I quickly fell back into that thought pattern of God is DEFINITELY NOT good!!

You'll just have to stay tuned for Part 2 as to why I am finally able to publish this post!

Back home and Ohio Results

Well, we made it back home!!  We had no delays or hiccups along the way!  It was still a very tiring trip for me!  But I think I made it easier than the going part of the trip!

Going to Ohio picture is on the left.  Return from Ohio is on the right!  I think it's fair to say I made improvements while I was gone!

Definitely not feeling 100% even now.  But I've made progress!  I had no clue how hard surgery was going to be!  I think I thought I was wonder woman!! But to no avail, despite my best efforts with the wonder woman jacket and everything...I'm really not!!  I told my brother tonight there was one thing I could say about that whole trip...it has been conquered!  It wasn't smart to have major surgery and then go.  It was not easy.  However, it has been conquered and put behind us!  At least the traveling part!

Chloe left very discouraged.  I think she's tired of fighting and battling!  She wants to be normal.  She doesn't want to have a disease period.  But she sure doesn't want to have one that very few girls have and there are no tried and true methods of dealing with it!  She's tired of trying this medicine and then that medicine.  And I quite honestly don't blame her.  I feel the exact same feelings sometimes for her!

But I also am very grateful to have doctors that seem to understand girls with DMD.  Although, every girl is different, the doctors in Ohio are not scratching their head not knowing what to do with Chloe. They are very willing to try different things.  And I just have hopes that one day they will come across the correct "recipe" of medicines for Chloe and she is simply going to feel much better physically and emotionally.

As of Saturday night, Chloe started yet again a new drug.  We didn't take any meds away...but we added to the mix!  So, now we wait and watch.  Does she tolerate it?  Does it help?  Does it affect her emotionally?  Those are all questions to be determined!

Can I just say I think this sweet girl is a trooper!  She feels bad almost all the time.  She deals with pain all the time.  And I have been dealing with pain for a few weeks and let me just say I have had enough.  I think I complain a lot more than she does!!  She just quietly endures!  I love her so much!

Recovery and Ohio

I am finally able to see well enough to write an update.  My vision has been severely impacted from my surgery.  But for the first time today, I can somewhat see normally!

My surgery was definitely not a fun experience!  They literally peeled my ear back to get to my jaw joint.  There was a large bone spur that the dr removed along with torn cartilage.  Then he sanded my bones so that they were smooth and would work together without cartilage.  He felt surgery was a success and when I am fully recovered should not have more problems.  I was very very sick during/after surgery.  Even though I was asleep, I distinctly remembered being violently ill.  In post op before I could even open my eyes, I asked the nurse if I had been sick.  She told me that I was so sick they finally put a tube in my stomach and pumped it out.  So crazy that I actually remember that. But that wasn't all, I was sick from that point almost all the way home!  It was NOT fun!!  And before we got home, the pain was horrible!  It was horrible in post op I remember that vividly as well.  And the nurse saying this is as bad as it's going to be!  I think they should have put me in a deeper sleep...that's what I think!

But...I had the best of the best taking care of me in the hospital and on the way home.  I couldn't have asked for Zine, Michael and Heather to be more attentive and sweet!  I'm sure I'll be reminded of how sweet they were to me for a long time!!  ;-)  And when I got home I had a sweet lady meet us and pick up my pain medicine.  And Sharon was super sweet to me as I was so very sick!  I was most definitely well cared for!!

The pain has continued to be a huge issue.  For the first time today, I have tried to switch over to Tylenol and off of some of the pain pills.  So today, I have not felt well at all.  Pain pills work much better than Tylenol.   But I had definitely made some progress from where I was.

As I suspected, I was no where even close to ready to getting on an airplane to head to Ohio with Chloe.  But much to my surprise, I must say I have some of the best aunts in the world.  Aunts who understand how much I miss my mama!  And aunts who have come to my rescue in a huge way!!!  One aunt came to my house and is loving on Krisann.  The other aunt came and travelled on with Chloe and I to Ohio.

Here I sit in the Atlanta airport.  Wondering if I am indeed going to conquer the next flight!  I did!  Because I know that God was supplying much strength!!  And you all were praying me there!

We saw our first round of doctors on Monday afternoon.  And I must say...I was SO disappointed.  To have traveled so far being so sick and to have such high expectations for a new team of doctors...well...I felt frustrated beyond belief when I felt like they were not helpful at all!  I am sure hoping that our regular team of doctors can put things in perspective for me tomorrow!  

Today was a quiet day for us.  Aunt Jan said if we couldn't go to Disney together we could at least make the most of a difficult situation.  

Chloe had prepped some craft activities to donate to the Ronald McDonald House here.  So we helped her assemble her craft bags.  And loved being a part of taking them to the staff and delivering such fun things!  They were definitely a HUGE hit with the staff here!

So we have been in blessing others mode this afternoon.  Thank you notes to some volunteers!  And activity bags assembled and delivered to the staff!  I have seen several little boys here this time.  They are going to love the pipe cleaner ninjas!!  I am at least partial to the pipe cleaner ninjas.  This girl...I love her heart!  Here we are getting blessed at the Ronald McDonald House but she has been on the lookout for ways to bless others while we are here!  Love her heart!!

It is exceptionally hard to keep nutrients going in right now.  Still have a lot of swelling and a good bit of pain makes me not want to eat anything.  But I think I have done a fair job at getting some nutrients in while I am away!

 You can see in this picture just how swollen my face has been.  I am pretty sure that even my forehead has been swollen.

Tonight when we cleaned and changed the bandage I got to get a good look at what the incision looked like.  Oh my word!  It totally gives me the goose bumps.  Literally they cut my ear off and reattached it!  I told Zine that's what it sounded like they were going to do...and by looking at the sutures...that's exactly what they did!!

That just literally gives me the hibby jibbies!!

No wonder my ear hurts!!  Tonight I am wishing I had not been the tough girl and tolerated some pain today.  It is definitely not feeling very swift tonight!

Tonight we're exhausted!  Chloe is already tucked into bed and asleep!  I am about to turn in for the evening too!  Aunt Jan...well...she has been such a huge help!  It has been a huge blessing having her with us.  God knows just what we need and He definitely prompted her heart to come with us at the last minute.

Pray for us tomorrow as we meet with a large group of different doctors!  Pray that they would all have great wisdom.  That we would all communicate clearly with each other!!  And that the best direction for Chloe would be made known!  Pray that my jaw would continue to heal, that the pain would subside, my vision would return to normal, and that my energy would return as well.

A desire, A concern, Wise Counsel, Guilt, and some Pixie Dust

So...the wife has been quite stressed.  The family is not used to mama and wife being stressed.   I am the laid back one over here.   On more than one occasion I have looked at my family with tears in my eyes and reminded them that I am NOT mad at that them.  That simply I am stressed!!  In the big scheme of our lives, this surgery on Thursday is minor!  But...when the cup is overflowing and plate is already full...it becomes huge!  Never mind the fact that I won't be eating for three months which in itself is a big deal!!  If you only knew how much I LOVED chocolate chip cookies.  The thought of going without one for three months is almost more than I can even consider!!  :-)

But as I began to plan out the details of making our schedules all work for surgery...I became very stressed.  All of a sudden what should be easy was no longer easy.  Thanks to MS!  As Zine and I began to talk, he wanted to go with me for surgery!  And to be real honest, I want him to go with me. He may have MS and it might wreak havoc in his body, but he is still my spouse!  So that should be simple, we go to Bham, I have surgery and he brings me home!  No biggie for most people.   I was so grateful for his desire to want to go!  Made me feel loved when I know that him going will not be an easy task for him!

But then enters a concern!  How can Zine do this alone?  He can't!  He needs help and I'm not going to be able to help him.  Who's going to keep up with my stuff?  Who's going to help him wheel around if he has to go along ways?  How will we park?  And a gazillion other questions started flying in my head!

So now...what's a wife to do?  Yes honey, I want you there.  No honey you can't go!  Yes honey I am so thankful that you still want to love me well.  No honey you can't go because it stresses me.  Really?  And as I thought, my insides got all stirred up!!  And I mean all stirred up!!!

I finally sat down with our pastor for a few minutes and spilled my deepest feelings...which is a rarity for me to share those with anyone!  He gave very wise counsel to me!  He definitely encouraged me and removed some of my stress.  He said some things I wasn't sure I liked but they were true!  And I know that!  But I still don't like them!!

And now...I am struggling immensely with guilt!  Feeling guilty about letting someone love me!  Letting someone go with us to Birmingham, spend the night away from their family, all to be with me and Zine!  Arghhh!  I have even tried to talk this family out of going!  I have given them plenty of text messages tonight offering them to back out!!  But for some crazy reason I get these text messages back that say...We WANT to go!!!!!!!!!!  Really did they have to put like 10 exclamation points at the end??

So...I guess there's no backing out, much to my dismay.  I guess I've got to swallow the pride, let them go, and let them love me!  But...I would much rather them be loving someone else!!!    And I'm just not an easy person to love right now!  And...it's not comfortable for me to let others in my life and love me!  It's so much easier when I keep you at arms distance and not let you behind my walls.  I like it that way better!  And if I had my wishes, there would definitely be no need to love me in this way!  I would much prefer you come love Zine in the hospital...not me!!  :-)  Zine would probably argue that statement!  But he's banned from my blog for awhile so I can say it if I want!

I  like to put a picture in my blog posts so that when they post on social media they have a picture and not this little tool looking thing!!  That just bugs me!!  But tonight I couldn't decide what picture would be good!  The only one I can think of is me pulling my hair all out!  Or a picture of a suitcase waiting to be packed!  But then God reminded me of a saying Krisann used to say all the time...so I decided I might need to remember it.  And it was her favorite saying for a long time...God uses Krisann all the time in our lives.    But I could hear her say tonight, mom all you need is faith, trust and pixie dust.  And she would put her little hand about my head and sprinkle me with pretend pixie dust.  But how true is that...I just need a bit of faith and trust.  And pixie dust never hurts!!

New Additions to Our Home

Nope....let's get one thing straight...I am not pregnant!!  We are not having babies!   It's not that kind of addition!  Just thought I'd take a minute to share some new medical equipment we have in our home now!  We are not done yet.  But we have some additions that are proving VERY helpful!!

 First you will notice some bathroom modifications.  We are so thankful that when we redid our house to make Krisann a space, that we went ahead and remodeled our bathroom!  So so so grateful that we did not have to do a HUGE renovation project.  But even though we made our bathroom accessible, it is still the room where we have the most falls.  So...we have added some more rails as you get ready to go into the shower area.  We also have had two men who have worked several many hours on raising our toilet up!  Amazing what a few more inches on a toilet will do for you!  Still needs some cleaning up a bit but it is finally done!  That was a project that should have been simple but turned out to be very time consuming and frustrating I know!  But much thanks to the two friends who stuck with it until the end!!  Well, I do need a new handle now!  But surely I can do that!! I'm sure if Noel reads this he will shake his head and say I definitely do NOT need to do that!  That guy has fixed several things this week that I messed up!!  Maybe remodeling and engineering are not my strong suits!

 This recliner has been a huge blessing!  I wasn't certain about it at first as I had to do some rearranging of the furniture.  However, Zine sleeps very well in this chair!  And as Zine has lost a lot of skills just in the past month, this has been a big blessing for him.  Now...he'd like to argue that he doesn't like it!  But...that's just on the reason why we have it.

This next piece of equipment is probably the one that is the most benefit.  But it is also the piece that stirs the most emotion in me!  So far as we have made modifications to our house, they have blended right in.  Well, this, it doesn't blend in.  It screams a handicap person lives here!  It has made tears come to my eyes several times.  But despite the emotional side of it, this is a HUGE help for getting in and out of the bed.  Even with this handle it is still difficult to get in and out of the bed, but it has helped make the process easier for sure!!

We have a few more items to come!  Another item is going to scream a handicap person lives here as well.  Those that scream a handicap person lives here...they are harder to embrace but really are the most beneficial for us to have.  So...we will continually look and be reminded of where we are.  I wonder if we will ever just look over the big pole in our bedroom now?  Will it just become normal?

But at the same time, I am grateful for these resources that are helping us!  Thankful for people who know exactly what we need!  Thankful for people who are willing to spend hours raising a toilet up to make it easier and safer to sit on.   Thankful for people who have helped us financially be able to afford equipment.  Thankful for those who loan us medical equipment as well!

And who knows....with a pole like this in your bedroom...you might get some entertainment.  After all, it does just scream for a stripper/pole dancer number!!!

Upcoming Surgery

I had tests done on Monday.  And I discovered on Monday I indeed do have to have surgery!  And...the surgery is expected to be quite a bit more complicated than my first surgery.  First go round it was laprascopic.  This time he fully expects to have to open my jaw up, remove torn cartilage, sand bones, and I don't even know what else!!  So...I will be having surgery on Thursday, Oct. 8.  I arrive at hospital at 5:00 am with a 7:30 surgery.  It is outpatient.  So I will be home Thursday afternoon.

I am typically very calm and laid back.  But this surgery has sent me over the edge.  I have been horribly stressed, grumpy, and emotional.   Outpatient surgery should be easy.  But...when your spouse has MS, it becomes a bit less easy and a bit more difficult.  In an overwhelmed moment, it was nice to be able to sit down with my pastor and say things that I would never say to most people.  And to have him speak truth, even if some of it was truth I didn't want to hear, was a huge blessing.  And for someone to take what I see as a lose lose situation and show me there are other ways to help it not be an impossible situation.  That definitely brought me some comfort.  But dog gone it...all that receiving I learned to do when Zine was sick...well...it's not so easy to receive when it is for me!!  It's all different when people are helping my family!  But when they are helping me...I'm not too fond of that idea!!  I am the strong one!  I am the healthy person!  I am NOT supposed to be down and out!  And so with those thoughts in my mind, I've pitched a lot of temper tantrums this week!  I've been quite angry and mad with God, with the enemy, and with the world!  No one has been safe from my frustration!  Heck, Krisann said one night she wished I would let her run away so I opened the door for her and told her I would miss her!!!  I never do things like that!!

Another issue is I am scheduled to get on an airplane the following Sunday and head to Ohio with Chloe.  She has NUMEROUS doctors appointments scheduled there that just can't be rescheduled easily.  I consulted with my doctor at great length about this trip.  We looked at his calendar and my calendar and contemplated and contemplated some more.  And we all agreed that this was the best situation.  I am VERY concerned about getting on a plane.  No one is sure that I will be ready for a trip.  But I do know that once I get to Ohio there will be rest time.  The last time I had surgery, I got into big trouble with my heart as I got dehydrated and that caused issues.  So, obviously, that is fresh on my mind as I enter this season as well.  I do know that to do surgery after returning home would cause me to miss almost an entire month of work.  That wasn't warming my heart either.  So...if I can simply hold my head up and get to Ohio, I can work on some recovering while I am there.  But I must admit, this trip right behind a pretty major surgery has me quite concerned.  But I just keep reminding myself that this decision was made with much thought and discussion and that I need to trust that God's got even this!!  But...I know this about me...I have major trust issues!!!

In Ohio, Chloe will see the neurologist as well as other doctors at the MDA clinic there.  Chloe is also seeing a doctor to discuss the possibility of a baclofen pump.  If we decide that this is the route to go, then that will be yet another surgery for the Smith Family!  And that will make 3 for Chloe this year!!  So we need heavy duty prayers the next two weeks!

I'd like to ask for all these specific requests but instead the only thing I can think to say is "Dear Jesus, please let us just survive the next two weeks." Then I see this picture...

and I think "Oh dear Jesus....we are in big trouble."

I'm totally certain when I look forward into the next two weeks I can't do this!!  But here's what else I know...we will get through the next two weeks!  We will do what needs to be done.  And it will not be because we are strong.  We are not!!  But evidently, I'm learning God likes to show His strength in my weaknesses.   And right now...I think I have a lot of those weak places for Him to work!

In a funk!

I have been so grumpy, teary eyed, needy, overwhelmed since Thursday.  A funk does not even begin to describe it!!  But I have three friends that have simply hit my target in responding to my funk!  One I called literally frantic!  She told me later she sure was glad she had caller ID or she would not have had clue who she was talking to!  And I talk to this lady on a regular basis!  But I don't think I've ever called her that frantic feeling before!!  I'm still sad she moved away and doesn't live three miles from me anymore!!  But I'm super glad for telephones and text messages.   She didn't have any advice for me! She simply listened!  She cared!  She said I'm sorry!  Another friend got to hug me while I weeped.  I didn't hear quit crying.  I didn't hear words that tried to fix my situation.  Only silence and an affirmation that I would get through this next medical drama on the horizon.  And my third friend, well she was surprised for a moment at the chaos that was spinning up again.  And then she prayed the most powerful prayer ever!!  Isn't it amazing how God used three different people with three different responses to care for my tender heart?!  They are not the only three God has used!  God has used many of my friends for different purposes.  These were just the three I wrote about!!  So no one get your feelings hurt that I didn't talk about you!!

And Zine Smith has definitely been working hard to stay out of fix it mode.  That guy just wants to wrinkle his nose and make my jaw work with no pain and my ear not hurt.  After all...that is his role often in my life...the problem solver and fixer!  He wants to encourage me that when they stick a needle in my jaw and inject dye on Monday that it's not going to be bad.  He talked to someone else who had an MRI but they didn't have to have that done!  So he tries to give me hope that maybe it won't be as bad as I am expecting.  But then he looks at me and says, I want to respond appropriately!  And I'm so sorry you have to do this!

Definitely in a funk over this surgery thing!!!  It was not on my to do list to say the least!

Another way I am in a funk...

To blog or not to blog...I often ask myself that question over and over again!  I have been blessed by many people when I have blogged.  I have got to see how God has used my blog and my realness over and over again.  That's been really cool!

The downside to blogging is that now no one ever needs to call or check in to see what's going on in our lives. They read it on the blog.  So in a lot of ways, blogging has reduced our one on one connections that we might have had without the blog.  The good side of that though is I don't have to make five phone calls and say the exact same thing because I know those closest to me will read my blogs!

The most difficult part of blogging our personal lives to an extent is that you all know us better than we know you!  And so sometimes that feels very intimidating.

It's so weird how God works.  Yesterday, I was done with blogging.  I was frustrated!  And I wasn't going to write anymore.  And then today...I get message from a sweet friend from college years ago that came across our blog!  And God said see, I want you to keep blogging.  I think because of my blog, God has opened doors for me to talk to other people that I wouldn't have had otherwise.  A lady in my church and I have become very good messenger buddies.  We rarely are together in person but because we have shared some medical journeys at the same time God opened doors for us to communicate!  So God says keep blogging!  You're being obedient!  You're reaching people!  That's what you wanted!!  You want people to see your struggles but you want people to see your faith!  And I hope that we have showed both of those in our blogs!  We are human!  We are far from perfect!  We do not walk this road without mess ups!  But there is grace in those mess ups!  Some days our faith is strong.  Sometimes we simply come up for a big gulp of air before going back under.  It's just where we are!  And I have come to understand...it's okay to be in both of those places!  It's okay to have strong faith and it's okay to struggle!

But let me just say...sometimes blogging is difficult!!  Sometimes I edit posts a gazillion times.  Sometimes we converse over whether we really want to write on that topic or not.  Many times I will let a blog post sit for days to weeks at a time before publishing it.  Just because I have to sit on it for awhile before feeling freedom to post it.  Sometimes I write a blog post and then two days later, I don't feel that way at all!  I have one right now sitting waiting to be published.  It was about God as a good Father.  We all know that's one of my weak points.  And I was making some headway in that area, but then slam I go back sliding.  So...I will just have to hold onto that one for awhile longer and let God work in my heart some more so I can publish it!  But...I will publish it one day and it will bless someone!  And that will mean I've wrestled and learned something and someone else has benefitted from my wrestling!  If only I were a quick learner!!

Another way I'm in a funk...

Well I think it might be PMS!  Now that you've all laughed and can't believe that I said that!  It's a fact of life!  And despite my night sweats and crazy hormones, those female cycles still come on occasion!  So...I'm thinking maybe one is on the horizon!!  It really is a fact of life for females!  And males have to live with females.  So I'm not sure why it is socially unacceptable to mention in mixed company or in this case mixed readers!!  :-)

Another way I'm in a funk...

My son is growing up.  Tonight he went with his sweet little girlfriend to a dance.  Don't get me wrong, we love his girlfriend.  But this mama...she's just not ready to let him grow up!  I'm not old enough to have a child this old!  And he's surely not old enough to have a girlfriend and go to a dance!  Wow!   However, we did decide...he cleans up nicely!!  Except for those tennis shoes with a tie!!  But I'm told that's hip!

I think I will try to sleep some funk off now!!