A Writing Wrestling Season

I know I have posted mini-updates on social media, but I haven’t taken the time to write.  Actually, I have been writing, just not on my blog.  However, a comment on social media stirred my heart and made me realize, I needed to take the time to write to you despite it being a writing wrestling season.

We are grateful for all of you who follow our family’s story.  To be honest, as my audience has grown, I have felt a bit more protective of what I share.   I have found myself wanting to withdraw the details and just give mini overviews.

As comments on my writing have grown, I have allowed comments to shape my writing or put hesitation in my heart about writing. Sometimes, I let the legalistic thinking of some of my readers to cause me to shrink back instead of speak up.

Also, I have a longing in my heart to write different things. I feel God calling me to write more about loving Him, loving yourself, and loving others. However, I feel like people who follow my blog desire to know about our life, what we are dealing with, and how God is working in the midst.  I also don’t want to force writing on readers that only are interested in the Smith’s medical story.

Because of these things, God and I had a wrestling season.  A wrestling season as to whether I was going to be obedient or not.  Initially, God called me to write my blog with vulnerability.  I strongly felt His call to give you glimpses of our medical struggles and glimpses of our faith. [bctt tweet=”His calling has not changed. However, I have allowed circumstances, fear, and other people to distract me from His calling.” username=”Karen_Kay_Smith”]

Also, anything else I write is going to be from a place of experience or wisdom.  Therefore, even though something I write might not have medical information in it, doesn’t mean it’s not part of the Smith story.  It will just be a different aspect of our lives.

It’s Time To Speak

A week or so ago, a social media comment bothered me.  I didn’t say anything immediately, but I stewed over it for quite some time.  God told me it was time to speak.  I wish I could communicate all God did in my heart through this comment that negatively stirred me.  However, God has renewed my spirit and showed me it is time to speak.  It is not time to shy away from sharing my life nor waffle over whether my readers want to read what I write aside from my family drama. Comments are now a time for me to give guidance and wisdom instead of shrink away in fear.  Contrary to my typical approach, which would have been me not saying anything yet stewing inside, I circled back to the social media comment that I struggled with so much and responded with truths we all need to learn.

The wisdom I have gained over the past few years as I have walked struggle after struggle is not for me to shy away from.  It is time to share from a place of victory at times and not a place of struggle.  Can I write both at the same time?  Can I write from places of success while still writing from places of struggle?  There is that wrestling again.  What God has confirmed in my heart to that question is one simple word.  Absolutely.

We all have places in our lives where struggles are going to abound.  It’s called life on this earth.  “In this world, you will have tribulation, but take heart, I have overcome the world.”  (John 16:33)  What’s interesting is in this same book of the Bible a few chapters earlier, we read, “So if the Son sets you free, you will be free indeed.”  (John 8:36)

As we do life, there will be freedom, and there will be struggles at the same time.  We can walk in freedom in one area, and walk through a fiery trial in another.  Can we talk about both at the same time?  Absolutely.  The enemy wants to put comments and situations in our lives that send us into a legalistic thought pattern that there can’t be both.  But I am here to tell you we can do both.

Feeling the Weight of Struggles and Holding Faith at the Same Time

Several years ago, I received a long text message with a preachy message about being grateful and what God’s Word said, etc.  My response was simple; I don’t need preaching right now.  I need comfort.  This response made my friend angry.  What came next in that conversation was if she couldn’t say what she thought, then she didn’t think she could be my friend anymore.   I still play these words over and over in my mind at times. Should I have done something differently?  Should I have just kept my mouth shut?

That social media comment that sent me spiraling for a bit, should I respond, or should I keep my mouth shut?

The message God has given me, again and again, is still the same.  We allow room for someone to hurt, to grieve, to feel the weight of their painful circumstances.  We also allow time and space for God to minister His healing in their lives.  Do we need to be grateful for what God has done in our lives?  YES!  But does that take away the need to feel and experience deep, painful emotions?  Absolutely not.

Over and over in Scripture, we find freedom and faith right alongside trial and tribulation.  Even Jesus, as he neared his time on the cross, cried out in anguish, if there is any other way, please let this cup pass from me. (Matthew 26:39) There were deep pain and deep emotion in Jesus’ soul. Did that make him less of a man, or did he need his disciples telling him he just needed to be grateful that He was about to save a world?  Not at all!

Maybe I am the only person who needs to hear this today, but perhaps not.

We can walk in freedom and trials at the same time. We can be grateful, and we can experience deep pain at the same time.  Struggles and faith go hand in hand. 

Now I’m changing gears from a wresting writing season to the sick season that has been going on in our home.

A Sick Season

The past month at my house has been filled with medical adventure after medical adventure.  I’ve held onto some of the details because it has felt personal.  It also feels like it would be classified as “too much information.”

Zine’s Sick Season

Zine started the sick season with UTI after UTI.  Antibiotic after antibiotic.  Finish one, and a few days later, he would need another.  The urologist decided a month ago that we were going to start flushing his cath a couple of times a day to see if that would help reduce the infections.

What I learned a long time ago, when doctors say we are going to start doing something, that means Karen is going to add a new routine to her life.  This was no different.

There’s no way Zine can flush his cath by himself. Even for me, it’s easier to have his hands to hold things.  So this cath flushing is a four-handed job at my house.  And may I just say, some days this cath flushing goes well, and then other days, things just aren’t as cooperative?  It makes no sense to me, but I can tell you it’s true.  I was thankful the other night when my dad’s nurse assured me sometimes flushing caths was tricky.

This flushing process made Zine extremely nervous, and it made me extremely nervous as well.  It took a toll on us for sure.  We had a month follow up this week with the hopes that we would no longer need to do this, but that didn’t happen.  For some reason, I think this is the new normal.

Zine’s urine was so saturated in the doctor’s office that their machine would not give a reading.  Of course, it has been sent to the lab for further testing, which ended up posing a real problem for us yesterday.

Thursday evening, Zine became so weak.  He could not move at all.  I put the gait belt on him and transferred him from commode to wheelchair, and he said, “Babe, that was all you because I couldn’t help you at all.”  I had hoped that after a good night’s rest, he would be much better.  However, Friday morning, I heard Zine bang on the wall.  When I went in, he said, I can’t get out of bed.  He couldn’t even get his feet off the edge of the bed.  We entered our morning routine with his body not working at all.  We managed somehow.

I called his MS doctor and discovered a problem.  Steroids would boost him up, but can also make a UTI worse.  Therefore, we needed the results of his culture or at least an update.

I discovered the urology office is not quite patient-friendly.  I encountered a very rude nurse in that office yesterday.  They close at lunch on Friday.  With direction from the neurology office, I called the after-hours number.  The rude person on the other side explained to me that checking on a culture was not an emergency.  I explained politely to her that another doctor had asked me to check on it, and I didn’t call without warrant.

What I didn’t say that I wanted to was, “Listen here, mam, to you this may not seem like an emergency, but when it involves my husband not being able to get the treatment he needs, it is an emergency.  And if your husband couldn’t move, it would be an emergency.”   However, it was a time I chose not to continue to argue.  I do try to be respectful.  I was not happy, though. I’m sure at our next urology appointment, I will bring that experience up.

Afterward, I called the neurology office back and let them know the urology office was unwilling to check on the culture and did not consider it an emergency.  They then told me if I got to where I couldn’t handle him at all, to call an ambulance and get him checked out at ER.  But who wants to go to ER during COVID season?

Thank goodness whatever had his body shut down has passed.  He says he doesn’t have that very weak feeling anymore and was able to get his legs off the edge of the bed this morning, and he did help me complete the morning tasks of getting ready.  As the day has gone on, he has seemed as good as he usually is.  We have no clue what had his body shut down, but we are glad it was short-lived.

Chloe’s Sick Season

Chloe has also had a sick season for the past two weeks.  It started with intense, sporadic abdomen pain.  Three days later, she was miserable nonstop. I made an educated guess that she had a kidney stone, but it was different from her other kidney stone, so I wasn’t sure.

To make a long story short, Chloe’s muscular dystrophy is wreaking havoc in her body.  For probably two years now, she has been under the care of a gastroenterologist.  He says her muscular dystrophy is slowing everything down in her digestive system.  We have altered and played with stomach medication to make her digestive system work a bit better.

Much to our frustration, it was discovered that Chloe had an impaction, and the doctor was concerned that she had a perforation.  A perforation would have sent her to emergency surgery, but thankfully, she didn’t have an intestinal perforation.  When they did the test to determine if there was a perforation, the doctor was hopeful that it would break up the soccer ball size impaction.  However, after several days of doing everything we could to cleanse her body, she still ended up in surgery.

She is feeling much better.  She has been weak but is building back strength fairly quickly.  I am pleased with her progress.  I am not happy about what her body is doing.  After surgery, the doctor developed a plan to see if we could stimulate her muscles to work correctly.  So far, it is not showing favorable signs of being a successful treatment.

We know that a colostomy bag could be in her future at some point, but the doctor is working hard to keep that from happening.  We need her body to work.

Krisann is a trooper.

Through all this with Zine and Chloe, Krisann has been a trooper.  Her anxiety has been increased, and I have had a bed partner many nights. However, she’s not been overly frustrated or exceptionally teary-eyed.  She has weathered this season better than she has other rough seasons. To be honest, this whole quarantine life she has done much better than I ever would have predicted.