Surgery Again UUGHH!!

So tonight I am mad, sad, angry, frustrated, overwhelmed, tired, and weary.  We have an enemy.  He has been wreaking havoc all week.  My heart has been broken terribly for our youth pastor and wife who lost their 23 month old unexpectedly this week.  That grief has affected everyone and everything in my sphere of friends this week!

Today the enemy has been at my house.  And some sweet guys got to experience that at my house today.  Poor guys were trying to do something nice that turned into something difficult.  I told them welcome to my home.  Anything easy is automatically hard!!  Satan lives here!!

Tonight I am beat down!  Please just pray for God to breathe life back into me!  If you had been with me today these are some of the faces you might have seen!!  (Big thanks to bathroom at Sweet Frog for the emoticons!  Yes I made Chloe and Faith go in the bathroom to see the faces the other night!!!  I love these guys!  I might even have some more of these to share with you sometime!!)

Today I went to the oral surgeon with my jaw.  He told me what I didn't want to hear!!  I had surgery 11 years and 2 months ago on my jaw.  But now there is something wrong again.  I go back Monday for them to do a test.  I then take the test results right afterwards to the surgeon, he decides what all has to be done and surgery is scheduled.  So in all reality by the end of next week, I will probably have had surgery.   It seems that either the disc that they placed in my jaw joint has cracked or else scar tissue has built up and worn down the disc that they sewed in.  So depending on scar tissue or not depends on how in depth the surgery will be.  Yes, I am NOT a happy camper!!  If there is one thing that I have feared the most over the past months was...what if something happens to me?!?!  My children do not need their mother under the weather.  My husband needs me healthy.  I have been exercising to try and stay healthy for as long as possible. And then something like waking up two weeks ago with a lot of pain and a mouth that won't open very well happens.  I have known since that moment there was something wrong.  My jaw and ear have given me much pain.  Anti inflammatories have been my friend.  And I hate to swallow pills!!!

But really...I'm weary!  I'm weary of doctors appointments.  I'm weary of surgeries.  Since November my family has had 4 this makes 5 surgeries in less than a year!  Not to mention the horrible time with Zine and his blood clots a few weeks ago.  Also not to mention the chemo treatments and head shaving ceremony!  And MS wreaking havoc in Zine's body.  And having a child that struggles emotionally and physically as well!   Weary!  Weary!  Weary!  Satan and I are having lots of conversations tonight as my ear pounds in my head!   God and I are having a few words as well.  I wish I could say they were sweet words with God.  But...I don't think they are too sweet.  But that's okay with God!!  He doesn't mind!  God and I will keep talking and one day they will be sweet words again!!  And when they are sweet words again, I'm pretty sure our relationship will be sweeter because of it!!

Now when I am feeling this overwhelmed, weary, mad, sad, frustrated, tired...I always need comic relief.  You know Zine and I are great at making me people laugh.  Just this morning Zine miffed me a bit as I was trying to help him get loaded into the car.   But amidst my complaining I leaned over to kiss him goodbye and he jokingly wouldn't let me kiss him.  So I said fine!  You're loss!  Have a good day!!  And then he tried to kiss me and I refused! All in fun of course!!  And Zine said, oh Karen you would be so sad if you didn't kiss me and something happened to me on the way to work.  To which I quickly responded, I have already kissed you goodbye in case you have forgotten.  Kissing goodbye once is enough!  So we had a little sick humor giggle out of that!!  I was actually quite proud that I had come up with a zinger!  I don't do that very often!!  So I've gloated about that today!!  He's just shook his head everytime I say something about it!!  I'm grateful to have a hubby who tolerates my craziness.  Whether it be funny crazy, sad crazy, stress crazy, unreasonable thinking crazy, he takes it all in stride.  Sooooo thankful!!

But when it comes to fun and happiness... I had a friend a few years ago who said, God knew you were going to need some happiness and fun in your life so He gave you Krisann!  So...just to end my post on a happy note...this picture of Krisann makes me smile!  What a love for life this girl has!  And this picture may never be deleted from my phone.  I can't tell you how many times I have looked at this picture and smiled the past several days! So amidst my gloomy post, I hope this makes you smile!  

Where's our Fun Spirit?

I love this picture of our pastor, his wife, and Joshua!  What I love about this picture is the sheer happiness that I see in it!!  It looks like they are having so much fun!

MS has robbed my family of many things.  But the happiness and fun loving spirit is what I miss the most!  As Zine says, everything is hard now so it's just easier to stay home.  Often when I decide to make fun happen by the time we get home, I am exhausted! And I think...now why did I think that was a good idea??!!

As I sit here and realize how many nights we are at home now...it's kinda sad.  I can remember my father in law calling and leaving messages and being frustrated that we were never home!  You could hear it in his voice....I've tried to call you several times but you are never at home.  Another message might say...Do you all ever stay home?  Another message might sound like Ain't y'all ever at home?  Oh if only I had recorded those phone messages earlier in our married life!  But there was much truth to that!  We were never at home.  Even after we had two kids, we never were at home.  We were always gone!    Conner lived the life of a party for several years.  He was always on the go with us.  Chloe came and despite her muscular dystrophy, it didn't slow us down.  We kept going and doing!  Dinner out, professional mall walkers we were, and picnics/trips to the park were a norm for us.  Hikes around Monte Sano were some of our exceptionally fun outings!  Even if we did get lost!!  :-)  Zine says we weren't lost.  We are on a marked trail.  I still beg to differ with him.   Guess that hike could have been worse...I could have done that when I was six months pregnant!  Oh wait, that's what I did when we walked to all the monuments in Washington DC!!  :-)

Zine and I have always enjoyed going and doing.  Zine loves people.  I don't like people as much as he does but I do like to have a good time.  Zine loves to tell the story of the night I got escorted out of the mall with my best friend and yearbook advisor!  We really weren't bad!!  We were just simply having fun!  And fun is what I love!

MS has robbed that fun!  Despite the fact that I try to make a conscious choice to choose fun...it's hard to choose fun!  It's hard to create fun right now.  It doesn't matter how many positive thoughts I have, how many plans I make to create fun, it often just doesn't happen!

Some of the simple things like dining out is even difficult.  Last Sunday we decided to try out an eating place (we won't call it a restaurant more fast food oriented) after church on our way home.  Between parking, sidewalk entrance problems, too skinny sidewalks for wheelchairs, lots of people, booths no tables, Zine Smith was pitching a fit.  A loud one!  We had to stop and take a breath and remind ourselves that we just heard a sermon about putting on the new self and not the old self!  We did finally manage to eat our lunch.  But the impromptu fun was gone!  Even that turned out to be a difficult experience.

I actually had this post written before my counseling session this week.  It seems that this was a topic of discussion at counseling!!  The question was posed....what would you like to do for fun?  It was not a feeble attempt it was true...I don't know!!

So...I'm praying that even in the middle of MS, that God would revive our fun loving spirits!  That God himself would show us what fun is now!  That God would in his miraculous way drop fun in our lives!

It's Raining It's Pouring My Hair is Curling!

My life feels like a constant thunderstorm!  Sometimes there are moments when things seem quiet!  Life is just moving along!  And then out of the clear blue sky the storm clouds roll in, it rains like crazy...

 And I don't have an umbrella!  Which means, that nice straight hair that I worked so hard for just starts curling up like crazy!!

Yep that happened Wednesday!!  And on Wednesday, we received a piece of mail that sent our lives into a tailspin again!  It was so nice to have had a few days where we just did life and didn't think about anything extra!

However, despite the fact that we all got soaked to the bone from a nice little thunder storm and despite the fact that the rain did a number with my hair, as I was drying off in the church bathroom I was reminded of this sign in the Ronald McDonald House.

And today as I have gathered needed paperwork and pulled things together that needed to be pulled together, I have reminded myself of this sign over and over again!  Some storms may come and go, some storms may stay for awhile, but what am I going to do in the middle of the storm?   I want to dance in the rain!  I want to love others despite the chaos of my own life and I want to be loved by others!  I want to stand strong and not be blown around by the winds of life!  I want to find the happiness to dance in the rain and not be weighed down by the storm!  I want to not be scared by the storm, but rather walk in complete confidence!  I don't want to be overwhelmed by the storm, but I want to trust in a God who is bigger than a storm!  And when the storm has me confused and uncertain and answers are not in front of me, I want to trust that God is working all things out for my good and His glory.  IF I can do those things I think that might be a little bit like what dancing in the rain looks like!

What We Have Been Up To

A long awaited update...One would think that if it is quiet and I'm not writing that would mean things were quiet and nothing was going on.  But actually it is quite the opposite.  Several many things have been going on.

I did go back to work.  I was exceptionally worried about going back.  But it has gone well.  With a little bribing on my part, Krisann has really changed her schooling routine for me which is very helpful.  And the most helpful thing ever about going back is that I changed my work times.  So this year I work from 8 to 12 and then I'm done.  I was very worried about how this would work but it has been the biggest blessing.  It gives me afternoons to homeschool, run errands, go to doctors appointments, etc!  I had no clue how much this one change would free my schedule up and relieve stress.  I am soooooo thankful that God led me to do what seemed like a little change!!

Zine had a CAT scan for follow up on whether his blood thinners were working.  And the nurse was so excited to say Mrs. Smith, I never get to give you good news but Dr. L says Zine is having very good results with the blood thinners so I feel like for the first time ever I am giving you good news!  Now, his lungs still have a long ways to go and they will probably never be clot free!  But we will take progress!!

Last week we had a very emotion filled afternoon.  We had our wonderful rehabilitation friend come spend two and half hours with us as well as an occupational therapist.  One of the first questions the OT asked Zine was where was he?  He quickly spouted off 103 Blackwood Drive!  LOL!  That wasn't what she meant!  She looked at him and said well, you are in a manual chair...what's your aversion to a power chair?  His response, it says I am raising the white flag of surrender!  She quickly got all over that.  She told him for the first time ever in a power chair he could go watch his 6 year old daughter swing outside.  She reminded him that when his family left him here for an evening walk a power chair would make it easy and possible for him to go with us independently.  She told him that a power chair was a tool by which he fought the big bad ugly battle of MS.  Suffice it to say, they didn't see things eye to eye!!   They watched to see how Zine got up and down, how Zine got in and out of bed, how Zine took his shower, etc.  They joined together and brought so many ideas and resources together that we didn't even know existed.  I think they left my house with a list of about 9 pieces of medical equipment to bring here.  The afternoon was very well spent for sure.  But when they left, we were emotionally spent!  It is so difficult to just embrace and acknowledge where we are.  And I am not looking forward to my house looking like a hospital!!  But at the same time, I felt so much relief to have them on our side and to take some pressure off of me specifically!  God was definitely in the planning of the OT coming to our house.  Thankful for our rehab friend that has been with us for so many years.  Who would have ever known the first wheelchair I ordered from her when Chloe was three would begin a long term relationship with her that has definitely grown and emerged.  So thankful for God putting knowledgeable people into our lives who know exactly what we need when we don't have a clue.


And just like God sending people into our lives who know exactly what we need when we don't have a clue, God does the same for us.  There's plenty of times that I don't even know what to pray for us. But I'm so thankful that the Holy Spirit knows exactly what we need and He is interceding for us with words we can't even imagine!

I can't wait to share some things that God has done in our lives!  But that will wait for another post!

Work? School? Routine?

After several crazy weeks, this week seems a bit more normal in some ways!  There's not been 12 doctors appts!  There's not been 4 nights in ICU.  There's not been chemo!  There's not been a surgery!

Zine did have a CAT scan today to reassess his lungs!  Chloe has had a lot of pain and some problems with a new medicine we were trying.  But I think that's just going to be part of life now!

Zine has gone back to work this week after being off for 2 solid weeks!  Homeschooling is working out some days!  Some days...well...we won't talk about those!

Monday I start back to online teaching so we will really have to buckle down and dig in and find routine.  I can't say how nervous I am about going back to work.  It's been so crazy I can't imagine adding 4 hours a day on the computer into my world!!  Prep time...well...it's been very little!  But as I shared this with my boss this week how my anxiety was rising...she reminded me I had done this before.  She actually said, You're a professional.  You could do this blindfolded with your arms tied behind your back!  I so needed to hear those words.  After I laughed, those words did calm my anxious heart some.

Routine...that actually makes me laugh as well.  I don't think we will ever have routine around here anymore!  I think it will always be hold on for dear life, cry when you need to and dance in the rain when you can!  Add a little homeschooling here and there.  Take advantage of impromptu opportunities to love others despite our craziness!

Some days I really grieve the lifestyle changes we have experienced.  Krisann is being raised in a completely different environment than my other two!  And that makes me sad!!  And she is making us all sad as she begins to understand that her daddy is sick.  She is making statements that will kill a mama heart.  And the other night, I think she broke her brother's heart too!  Oh how we would love it if we could shelter her from the struggles and pain!

Some days I would give anything to go back to our old way of life...

Function Only Mode

This week...this week...is one for the record books!  Actually the past three weeks should go down in the record books for something!!  These past three weeks we have been in function mode only.  And I'm not even sure we've done that very well.

As many are awaiting an update from our trip to the neurologist, I simply have not had time to sit down and write!  Nor have I had the emotional stamina to write.  I am simply put...weary and worn out.  I am still struggling to function somewhat normal.  My brain is just foggy!  Details escape me regularly.  Simple decisions are very difficult to make!  Completing tasks seems impossible. But despite this...we have moved forward the best we could with life this week.

We did have an important drs appt with neurologist on Wednesday.  Our appt was at 4 pm.  Left home at 3.  Arrived back home at 10 pm!   A long night!!  Who knew that something as simple as going to the dr with you could be such a blessing?  That happened this week.  A dear friend went with us.  When I said I feel bad your skipping church to go with us, his response was I'm not skipping...I'm doing!  But I'm not sure Zine and I would have survived without him!!  Sooooooooo thankful!  Forever indebted!!

We arrived and was almost immediately called to the back.  But then the waiting began.  The nurse was quick to do her stuff.  But it seemed like forever before the nurse practitioner came in and did her evaluation.  Then it wasn't long before Dr. L came in.

When we went to this appt, Zine was pretty certain he was finished with all MS disease modifying drugs.  This chemo didn't work!  And it was the one with the best track record.  And after all we've been through and it hasn't helped MS, it doesn't really make you want to do anything else.  So we went, prepared to say we're done!

What Dr. L did do, was say we didn't need to do anything right now.  We need to give Zine's lungs some time to heal.  He has ordered a repeat CAT scan for Wednesday to assess if we are making progress with the clots reabsorbing.  But for at least three more months, we needed to take a break from treatments.   We still treat the symptoms of the disease but no chemo treatments or other drugs!

If after that we decide to treat the disease again, we will most likely be trying a chemo type drug that will be given 5 days in a row.  It will take about 8 hours each day.  We literally would go spend a week in Cullman, AL.  Now...after just getting out of hospital...that thought is overwhelming.

Dr. L is always good at encouraging you to stay in the fight.  But ultimately it is our decision whether we choose to proceed or not with the 5 day treatment in a few months down the road.   He said he would respect whatever decision we made.  And now...is simply not the time for us to make that decision.  Right now we are worn out and I think we are both ready to give in to the fight.  So I'm grateful that we didn't have to make that decision Wednesday night.  Grateful for a few months of not fighting a disease and just focused on allowing healing to take place in Zine's lungs.

We have a whole stack of prescriptions for medical equipment.  Words like power wheelchair, transfer boards, rolling shower chairs, a new bed, a taller toilet, grab bars, and patient lift were written on little papers that serve as an official documentation of our need.  Now we begin the hard part of implementing all those changes.  Once again, grateful for some knowledgeable people to walk beside us in these changes.

I would like to say I left feeling good and liked where we are.  Instead I left feeling very heartbroken.  This is not going away. I don't think there's anything we can do to make it go away.  It's forever here on this earth.  There's no relief.  It is.  It is our life.  It is our life forever.  And for that I am exceptionally sad.  And overwhelmed.  Oh I know that God could choose to heal!  And if He healed we would definitely be ecstatic and give Him all the glory.  But short of that miracle, this is.  And this is not the life we desired.  It is not we had planned.  It is not fun.  It is full of pain and grief.

Zine hates for me to be upset in his presence.  It is not okay for me to cry over him and MS in his presence.  I understand his thoughts and feelings regarding that.  But sometimes, I can not contain the tears!  I worked so hard to keep it together for him.  I did shed tears but I did not fall apart!  By the time we left the doctors office my head felt like it was going to explode.  And I think it was simply me trying to contain my emotions and stress just taking its toll in my physical body!

And there's been no time to process things emotionally yet.  We have lived in the function only mode all week!!  12 doctors appointments and a college visit all in a matter of five days!

And I know I've posted this picture before but it still remains as truth.

When Sleep Doesn't Come

It is 2:04 am.  I have yet to go to sleep! When I don't sleep that's because there are things bothering me deep in my heart!  And tonight is one of those nights.  I have laid in my bed and tried to be the good girl and close my eyes and rest!  But then...Krisann came and joined my bed and that was the end of me being a good girl.  I got up with sweet Krisann, gave her some Benadryl (yes her nose was a little stuffy), let her have the iPad and tucked the wide eyed girl back in her bed.  So what am I to do now?  I am now WIDE awake.  She's joined me up front several times now for various reasons, she has decided she would sleep on the sofa which I agreed to but that didn't last very long, and now she has gone back to bed.  But I'm waiting for her return up front at any moment and guess what...I don't even care.  She won't know what to think other than she has the nicest mommy in the world who doesn't even get frustrated when she gets up a gazillion times!  Not been a cross word out of my mouth tonight!   A rarity of a jewel for sure.  Most of the time in the middle of the night she gets a very grumpy mama!

Today (rather yesterday) was not a bad day.  Busy...yes!  But not bad!!  But it was one of those days that my mouth fell open as I looked to God and said, "REALLY???!!!!"  There are times when I just look around and think Satan is alive and well.  Other times, I struggle with what am I supposed to learn?  What is the purpose in the struggles?  But yesterday was one of those Satan is alive and well days.  And he's not just wreaking havoc in my life, he's getting my friends too!!  But three hours later I struggle with what am I supposed to be learning?  What's the purpose Jesus??

Let's just be real...life is hard, parenting is hard and marriage is hard!  Marriage is really hard sometimes!!  And it's one of those seasons in our lives!  Stress wreaks havoc in marriages.  And need I say...we have had more than our fair share of stress??!!   Oh please don't think we're about to divorce or anything like that!  Nope!  We are committed, we love deeply and when we love deeply we often hurt deeply.  Take that love and hurt and multiply it by 2 and viola...a perfect situation for struggles.  But one thing we both know...we will survive!


Parenting struggles...a child that is growing up way too fast with too much responsibility on his shoulders breaks my heart.  It is just not fair for my sidekick to feel so much responsibility!! But oh how deeply I love this child who feels so much responsibility.  I see myself in him all the time!!  And that's not always a good thing!!   A daughter that struggles with anxiety and depression and medical issues some days is way too much.  Last night was one of those pain nights.  Finally a warm bath to help those hurting legs.  How I wish I could take her physical pain away but also her emotional struggles!   And a lively 6 year old named Krisann...need I say anymore?  But this girl is beginning to process all going on in our lives and it's hard for my mommy heart.  She has said things like if I were God I would take daddy's MS away...but I'm not God!  This weekend she said my daddy isn't going to die because I'm not done with 5th grade yet.  Too too much for a mama heart!  As I sat and cried with  my pediatrician on Monday about how best to help her, I just felt totally overwhelmed.  It's one thing for teenagers to go through what we're going through but 6 year olds??  Really??!!

Life struggles...since the blood clots and the blood thinners...everything has changed.  Monday morning as Zine coughed and coughed I thought oh no....what's wrong??  Tonight as he has coughed on and off through the night I think...is this normal?  Why yes he could have congestion Karen and it's perfectly normal.  But wait, what if something is going on with his blood clots and it's causing him to cough?  Are we missing something?  Oh yes, the doctor told us over and over that he can not fall!  That's laughable almost!  Tell a guy with severe MS he can't fall?  Really??  My idea of safe and his idea don't always agree together to say the least!  My loving concerns aren't always appreciated to say the least.  I try hard, really hard, to not over react or over respond, but my goodness, it has been a constant battle this week.

A visit to the neurologist...that is most definitely a life struggle.  Our lives have been turned upside down on more than one occasion by a visit to a neurologist.  But this visit at 4 pm Wednesday...it might be way different. It has the potential to be a life changing visit in a different way.  There have been many discussions about moving forward between Zine and I.  Difficult conversations at that!  What will be the final outcome about moving forward...I guess we will know at some point after 4 pm!!  But I have some suspicions about what might be to come!!  Sometimes we think we are ready for things but when it comes right down to it, we're not so sure!!   So praying for God to go before us, with us and follow us home!!  Praying for God to give VERY clear direction!!  And praying that the final decision about moving forward would be made with much direction from the One who knows all, who sees all, who controls all things!  But can I just be real?  Just typing about this visit makes my body shake uncontrollably!

In my blog, I want to be honest.  It is my desire that others would get glimpses of the struggles we face!  Sometimes I feel that Christians paint way too pretty a picture about struggles.  I want to poke some Christians and ask if they are really real!!  I obviously have not arrived at that point.  But I also want others to see glimpses of our deep faith.  And tonight even as I wrestle with these struggles, I cling to my faith!

I love music!  Music can lead my heart to the Lord quicker than anything.  The past few days there's a song that I keep listening to.  It's called Arms That Hold the Universe.  You can click and listen.  This song reminds me of so many truths!  God is a God of strength.  He holds us and Zeph. 3:17 even says he sings over us.  Sometimes I just get this beautiful picture of a daddy who rocks their child and sings to them and calms them with his love and compassion.  That's exactly what God does for us.  We just have to be willing to climb up in His lap! And that is the part I struggle with..the climbing up and accepting what He offers! I'm often the child that just wants to be put in their bed with out that sweet time of rocking and connecting or sometimes I'm the child who kicks and screams when they are being comforted, rocked, and sang over!  You know that exasperated parent who after doing everything they can finally puts a screaming child in their bed because they don't know what else to do...yep...that's me a lot of times as well!

This song also reminds me that with three words God calmed a raging storm!!    And He can speak those three words into my life.  Peace be still!  So tonight amidst all these struggles, I'm just being still and listening to this song over and over again!  Reminding myself that God is in control.  I am His child!  He will never let me go!

Real life...real struggles...real faith! In the midst of real life, real struggles, and real faith, God is still God, God is still in control, and God still speaks and calms the raging seas!

PS:  It is now 3:36.  Yes this took me an hour and half to write and make my picture!  Sweet Krisann is now sound asleep on the sofa!!  And poor Amanda is getting her tomorrow after she's been up half the night!  I think we shall pray for Amanda!!  And...I still do not feel sleep coming on!! Soon...maybe soon it will come!