Sunday, May 21, 2017

Eighteen Months

December 21, 2015 was a horrible early morning.  One of the worst I can remember.  I was startled awake from the dreaded sound of Brian starting a seizure.  I quickly switched the lamp on and turned to him.  I did my best to turn him on his side and keep him on the bed as his body aggressively jerked and convulsed. There is a sickening feeling experiencing this with him, but also, not with him.  Alone.  He was not aware or in any sense of the word “there” with me.  His body finally settled down.  I waited watching him, checking him, and making sure he was ok.  There was blood covering his pillow and throw up. He had peed himself.  He could not be woken.  After about an hour I turned the lights out and tried to settle back to sleep.  It wasn’t long, maybe a few minutes, and it started again.  “Oh NO!” I cried as I turned the lamp back on in turbo speed and tended to him again.  My heart ached watching him again.  He had never had two in a row. Worry FILLED me.  Should I take him in?  I told myself if there was a third, then we would go. Well, the third one came, but it was a mild seizure.  It was a THIRD one, though, and I was a mess.  I got dressed and when I was able to wake him told him we were going to the hospital.   Long story short, he would not go.  He hadn’t seen what I had. I felt so helpless, alone, and worried beyond belief.  Soon it was time for the kids to get up and the day rolled on normally for everyone else.  I went throughout the day doing my best.  

I had no idea that this was just the beginning of a long, hard, challenging, time.  Brian usually had a seizure every year and a half to two years.  He had never had more than one at a time.  The months that followed were new as far as his seizure activity.  Seizures became more frequent  and he would have several seizures or “clusters” of them.  The episodes came closer and closer, to be at about 3 week intervals.  When he had one it was usually in the early, early morning hours then they would continue coming.  Sometimes up to seven or eight seizures in an eight to twelve hour span.  

Seizures are terrifying.  Honestly, whatever you have envisioned in your mind from what you have seen on t.v. is nothing like the real thing.  I hate them.  I more than hate them.  I despise them.  They are horrible, like an evil monster has possessed the body of the kindest, gentlest man.  The arms that I used to feel safer in than any other place in the world, were not.  Laying down to go to sleep at night became a dreaded task.  I put it off.  I hated going to bed.  I can’t really put into words the feelings or real physical pains that came with just going to bed.  My heart raced at night.  SO much anxiety.  Painful anxiety.  BUT I must keep on carrying on!  Kids to be tended to.  Husband had work to get to.  School, work, and church callings.  Life continued, whether I slept or not.  Life continued, whether I was up several times a night with Brian.  Life continued, no matter how emotionally frail I felt.  Life continued even when I nervously anticipated seizures through the day.  Life continued, even when I didn’t feel I could handle it.  I had no idea how to deal besides to keep on going through the motions.  There were many very difficult days. MANY. This was hard.  Sooooo hard.  It was hard in ways I wouldn’t have ever thought.  Hard emotionally. Hard physically. Hard spiritually.  Hard on our relationship. Hard on the kids.  Hard, hard, hard.  

As time continued it seemed there would be no solution.  Different medicines were not working.  I began to feel hopeless about it all. It had been fifteen long, hard months. Then, I changed my prayers from praying it away, that meds would work and Brian could drive and feel happier, to praying for the strength to handle my part of this.  I prayed for peace.  I prayed to handle all the needs and added burdens better. I prayed that Brian could feel content and happy.  I believed that this was our new normal.  I felt this was not going to get better.  PEACE came.  STRENGTH came.  I knew God was aware and cared.  We carried on, but the heaviness of all this seemed a little lighter.  

Brian had an appointment with his care provider.  It wasn’t a special appointment.  It was an appointment that we had made several months earlier.  He had been taking a very expensive medicine that really wasn’t helping.  We went to the appointment and updated her with what was happening.  She was surprised that the medicine wasn’t helping.  We discussed lots of options.  We talked about medical cannibas.  We talked about several medicines.  After all the talking and thinking the doctor said, “My gut says lamictal.”  

Brian said, “I’m feeling keppra.”

“But her gut is saying lamictal.” I said to him. (I really should know better by now.)

“I’m feeling keppra.” he said again happy and confidently.

So, she wrote the script for keppra. This would be Brian’s fourth medicine.  She wrote up how to safely transition between the two medications. It takes about five weeks when switching medicines.  After we got home and filled the prescription there were several events that happened that really made us hesitant and worried to start the new medicine. (some scary possible side effects) He put it off. The longer he waited, though, the less he had of the old medicine to make a safe transition.  

We attended an epilepsy support group.  Brian wanted to.  That was a big deal to me.  We heard and talked with others who were dealing with what we were dealing with!  They knew the meds and struggles of trying to find one that worked.  They knew the fear.  They knew the struggles.  
We had a family home evening with our kids and discussed what to do when dad has a seizure.

About a week after the doctor visit, Brian began to take the new med in small doses and slowly build up to the full dose.  After he reached the full dose, he began to take less and less of the other medicine.  Three weeks came, with no new seizure activity.  The weeks continued to pass with no seizures.  I tried to not get excited.  I didn’t tell anyone.  I didn’t want to jinx it.  Weeks continued to come and go with NO SEIZURES.  Could this medicine be working?  

Two days ago, after going three months with no seizures, Brian drove himself to work for the first time in eighteen months!!!!!  I can’t even express the gratitude in my heart!  I get tears and choked up just typing this.  I am emotional and cry easily about this!  I am so thrilled for Brian!!!  He is so independent and I know this has been a big challenge for him.  As the days approached that he would be driving, I was getting very nervous.  It’s a lot of faith we put into those tiny pills.  I’ve seen him have more seizures than I can count.  As soon as he began driving it almost felt like this never happened.  I even wondered how I did all the driving for that long.  (I’m aware this could be over any moment)  

I KNOW we were blessed through this difficult, difficult time.  I know there were angels helping.  I don’t say that lightly. I have had physical strength that I am not capable of or abilities I needed when I should not have had them.  There were tender mercies.  One is that I almost always was close by him when he had a seizure.  I have caught him, held him on a stool at lunch, held his head as he seized in the shower after hearing him crash with no injury (his head was about an inch from the faucet).  He has had them just after walking down the stairs.  He has been kept safe through it all.  There has been soreness, injured tongue, fatigue, and some confusion related to the seizures, but considering all things, he has been extremely blessed!!

I hate that life has to be so hard, but very thankful for the Lord’s hand in our lives.  I consider the difficult times to also be blessings.  I know that sounds crazy because I have HATED this.  I hated this for Brian and the challenges that surrounded it.  I know that we are stronger from it.  Our faith, our relationship, our family, all of it.  My testimony and reliance on the Lord has grown. I LOVE  God and the love and peace I have felt through this.  I wonder sometimes what I would be like without any of the trials.  I kind of hate to imagine it.  I am thankful for this blessing that Brian’s medicine is working, even if it is just a break.  I know this will be a life long struggle.  I pray for his constant safety.  I love Brian!  He really has a resilience that I admire.  He never loses his faith.  He hated this time, I know that, but he really didn’t let it drag him down or define him.  He figured out how to get things done.  He worked hard at his business.  He took kids on bike rides and spent lots of time with them despite not being able to drive.  He tried to keep a positive outlook.  He lives in faith, not fear.

 Brad making cookies for our Stake President on his birthday.  President Keller texts everyone on their birthday.
 Brad working in his garden.

 Grandpa Bryce and Grandma Mary came to visit.

 Reagan and Aubryn after their amazing choir concert!

 James is graduating from Kindergarten!

 EDEN TURNED THREE!!!!  My baby is no longer a baby.

 BRIAN DRIVING TO WORK!!!!!!  It's been 18 months since he has driven.  He has now gone three months without a seizure.  wooo hoooo!!!!

 Eden wanted to help clean.  She was vacuuming with me.


 T ball has begun!  James and Wesley are on the same team.  So cute to watch.  Wesley was devastated  when there was no treat after the last game because someone forgot.

Monday, May 15, 2017

About a month ago Brian and I were on an airplane and sat by a boy who appeared to be in his 20’s.  We began talking and he told us a little about him.  He said he was doing an online religious study.  It was intense and he could only do one class at a time.  He said it would take about five years to complete.  He was a non-denominational Christian. (Not sure if he had been baptized into a certain faith.)  The course he was studying, however, was with a specific religion that he felt aligned with his beliefs the most.  He had studied the Bible and read it.  He could quote scriptures.  I respected his enthusiasm to study God.  He asked if we were LDS and wanted to know some of the differences between our beliefs.  I told him about the LDS faith and answered many questions.  (He looked surprised to find out that bishops are not paid and all the work done in a congregation is done without pay.  We receive a job that we are called to and get moved around, not moved up, just around.)  We were all respectful. There were different beliefs discussed and honestly, I was surprised at how many there were.  The conversation has stirred my mind and I have thought a lot about it.  

Here is a rough list:
-We believe that God, Jesus Christ, and the Holy Ghost are three separate beings.  He does not.  He believes God came down in the flesh.
-He does not believe in modern revelation. We do!
-He does not believe in a prophet on the earth today.  We do!
-We believe that we lived in the pre-existence before we came to earth.  He believes that his life began at conception.
-We believe that we are literal spirit children of our Heavenly Father.  He does not.
-He believes that it is quite offensive to claim that we can progress to become like God someday.  
-He believes that when you die, that is final judgement and you either go to heaven with God or hell.  We believe there is a time where we dwell in paradise after death, then final judgement, we are resurrected, and then go to the kingdom we are judged worthy of.
-He does not believe the Book of Mormon to be the word of God and felt that the small portion he read sounded like, “Someone was trying to copy the Bible.”  We believe the Book of Mormon to be the word of God and another testament of Christ.

I reflected mostly on two things.  No modern revelation, personal or through a living prophet, and not knowing that he is a child of God.  Those truths have blessed my life incredibly.  Knowing that I am a daughter of God makes all the difference.  I am trying to live like Christ’s characteristics for more than to be nice and good so I can live in heaven.  I am trying to become LIKE HIM.  I have great potential.  As a child of God I can essentially grow up to be like him. Knowing the big, eternal picture gives me purpose and goals.  I know I am loved infinitely.  I know where I came from.  I know why I am here.  I know God has a plan. I know all of this is part of His plan.

This lead me to ponder deeper on the power of that knowledge.  Knowing we are children of God is powerful!  Knowing where we came from and knowing Jesus Christ’s role in the Plan of Salvation is amazing knowledge to have. Knowing about the pre-mortal life and the war in heaven is such a blessing.  It led me then to think about the knowledge that gives us about Satan.  We know where he came from.  We know how he came about which gives us an advantage.  We know his motives.  We know his nature.  We know why he is what he is.  We know his tricks. We know his manipulations.  We know his desires.  We know his arrogance, anger, jealousy, and spitefulness.  We know his power, and the limits of it.  We know he is there.  That is also very powerful information!  Knowing that helps us know his lies.  When you have more information on the enemy, you are better prepared to avoid their traps, tricks, and manipulations.  We know we have power over him.  He cannot make us do anything.  We have to submit to it.  He will never have what we have.  He will never progress.

Thinking about this made me wonder what Satan is to this man we sat by. Where did he come from? Why is there opposition?  

Missing truths in the Gospel gives Satan an advantage over people in the world. People don’t know their true divine nature, infinite worth, and great potential.  Missing the truth about Satan also REALLY gives Satan an advantage over people in world. They don’t know they have a body that he is jealous of.  They don’t know he will do all he can to ruin their agency that they fought for.  They don’t know the root of his evil.  What a cunning being he is!  A devout Christian man who studies the Bible in depth can walk away from his worship knowing little about how Satan works.  
He doesn’t know the root of where Satan began because he doesn’t believe in the pre-existence. I believe this is part of Satan’s cunning plan. The less people know about him, the more defenseless they become. Scary.
2 Nephi 28:23 And others will he pacify, and lull them away into carnal security, that they will say: All is well in Zion; yea, Zion prospereth, all is well—and thus the devil cheateth their souls, and leadeth them away carefully down to hell.And others will he pacify, and lull them away into carnal security, that they will say: All is well in Zion; yea, Zion prospereth, all is well—and thus the devil cheateth their souls, and leadeth them away carefully down to hell.

Sunday, May 14, 2017

Mother's Day!

 I AM SO BLESSED!!  These kids are going places!  They all have great gifts and talents.  I feel strongly that they are amazing people.  They have done great things and will do great things to come.

Brad got his patriarchal blessing on Easter of this year.  Beautiful experience!!!!

 Trying to fit Brian in.  We definitely need a selfie stick.

 Not sure who did this.  But it made me smile.
new haircut!  Looks like a new man!

May is BUSY!

 It's RECORDER time for Reagan!  yay!!

 Picking dandelions at the golf course.

 That isn't for t's it for little flowers.

 Aubryn is catcher

 Idaho Falls Temple open house

 She is almost three.  These moments are limited.  I will MISS this.
 Brad was bored at Kristel's house so he weeded her front yard.
 The 2017 School year in one picture!  Bottle flipping, fidget spinner, and the dab.

 This must be the only picture from Wesley's fifth birthday!  WHAT?  I took lots of video that I will load.
Reagan loves pitching.