Epilepsy and Seizures - Scriptural Inspiration and Strength

2003 - My Five Incredible Children at Janson's Baptism
always loving Joshua!

Epilepsy and Seizures - 

Scriptural  Inspiration and Strength

I don't often fully explain the depth of the difficulty and anguish of watching my precious Joshua struggle with the pain and heartache of epilepsy.  I will go into some minimal detail of this journey at this time, but the last five years of his life, he had an average of 2 to 5 seizures a day (ranging from petit mal (absence) seizures, atonic (drop) seizures and tonic-clock (grand mal) seizures.  Since he grew to be 6'1" tall, the drop seizures were very dangerous, extremely frightening, and the grand mal seizures long and excruciating, and these seizures had us on pins and needles many days knowing he could drop fast in a split second!

I loved helping my boy!

He had multiple injuries from this daily challenge of epilepsy.  He had a higher chance of any type of seizures in the morning, but often had them in the middle of the night.  In fact, at one point I finally slept in the same large king bed with him because he would thrash around so violently that I needed to be holding and helping him the moment the seizure began.  My years as a single Mom were spent pleading and praying for help, which help I received time and time again from family, neighbors, church friends, and strangers.  We spent many tender moments together as I held him, protected him, comforted him and talked to him.  Although many exhausting nights were part of our life together, my love and awe of Joshua grew watching him work through the excruciating, painful and confusing episode of each seizure.  

Uncle Mark and Joshua taking a drive with broken teeth from a recent seizure.

His injuries were heartbreaking - from broken jaws to gashes in  his face to broken teeth.  A violent grand mal seizure could occur at any time ... from rivers to bathtubs, grocery stores to cars and the slide at the park to the spectator benches at sporting events.  He was in constant danger and we were in constant fear.  My son Jeremy's statement after one of these harder seizures tugged at my very heart strings when he said, "Mom, these are sooo hard."  

And the seizures were so very, very difficult and heartbreaking.

I am so thankful for my amazing family and extended family, friends and neighbors, church friends and strangers who were ready to help, lift, strengthen and serve at any given moment.  I am in awe of my incredible children - Jeremy, Jamie, Jacob and Janson - who throughout their young life were patient with his aggressiveness, loved him through his hard moments, strengthened him with his love, and showed maturity and love to their special brother that was beyond their years.  They are my heros!

But what I remember shining through was Joshua's beautiful smile as the seizure would begin to subside, and the fog and pain of each seizure would clear and the light return to his eyes.  And I remember the most precious word from Joshua as he would blurt out "hi".  It was then I knew he would once again, be okay.

Joshua at the Pine Valley River, a spot where one seizure almost took him into the river!

Although I do believe his severe autism and mental delays shielded him from the fear that would surely have been with him each day if he understood what each minute, hour or day could hold.

But when Elder Jeffrey R. Holland spoke at LDS General Conference in April 2013 about the family of an afflicted child, the words from the Bible, and the words from Elder Holland spoke understanding, empathy, love and compassion to my mother heart.  We lived this very scripture story.  

Thank you for lifting, blessing and strengthening me with these beautiful words below:

On one occasion Jesus came upon a group arguing vehemently with His disciples. When the Savior inquired as to the cause of this contention, the father of an afflicted child stepped forward, saying he had approached Jesus’s disciples for a blessing for his son, but they were not able to provide it. With the boy still gnashing his teeth, foaming from the mouth, and thrashing on the ground in front of them, the father appealed to Jesus with what must have been last-resort desperation in his voice:

“If thou canst do any thing,” he said, “have compassion on us, and help us.

“Jesus said unto him, If thou canst believe, all things are possible to him that believeth.

“And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief.”¹

This man’s initial conviction, by his own admission, is limited. But he has an urgent, emphatic desire in behalf of his only child. We are told that is good enough for a beginning. “Even if ye can no more than desire to believe,” Alma declares, “let this desire work in you, even until ye believe.”² With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, “If thou canst do any thing, have compassion on us, and help us.”³ I can hardly read those words without weeping. The plural pronoun us is obviously used intentionally. This man is saying, in effect, “Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”

“If thou canst do any thing,” spoken by the father, comes back to him “If thou canst believe,” spoken by the Master.⁴

“Straightway,” the scripture says—not slowly nor skeptically nor cynically but “straightway”—the father cries out in his unvarnished parental pain, “Lord, I believe; help thou mine unbelief.” In response to new and still partial faith, Jesus heals the boy, almost literally raising him from the dead, as Mark describes the incident.

Although Joshua was not healed from his epilepsy during his lifetime, I do know that he had many angels protecting him, surrounding him, loving him and strengthening him.  I know that he felt extra love during these excruciating moments.  I know that through the tears and anguish, our prayers were answered as we were given emotional healing, additional strength and comfort and love, even more than we will understand fully in this life.

https://www.lds.org/ensign/2013/05/lord-i-believe.p1?lang=eng
#epilepsyawarenessday2018
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Helmet of Salvation

Joshua's Helmet of Salvation

Just like one hard seizure could cause Joshua an injury that would take weeks or months of healing, one decision or choice could cause short or long-term harmful effects in our lives and in the lives of others.

Joshua’s battle with seizures seemed like a constant war between safety and injury.  For protection from the injuries from his grand mal seizures, Joshua began wearing a helmet.  His first helmet was a typical skateboard helmet which protected his head only.  As the seizures worsened, he needed a helmet with even more protection, yet allowed him to eat.  We began searching and searching for just the right helmet and tried several that did not work.  Joshua’s Aunt Debbie Anderson also searched hard and found a downhill biker’s helmet by GYRO with a very secure jaw piece that jutted out past his chin.  Although Joshua aggressively fought wearing this helmet by hitting and banging, we lovingly, very firmly and consistently, put this new GYRO helmet on from the time he woke up until he went to bed (with the exception of a few times when he could safely sit without fear of injury).  Joshua intensely disliked his helmet, but because his fine motor skills were so low, he was not able to undo the strap which held the helmet secure.  This was a blessing!

Joshua’s resistance to this helmet is very symbolic of the “helmet of salvation” referenced in the New Testament.  In Ephesians 6:11-17 we are told to “put on the whole armour of God, that ye may be able to stand against the wiles of the devil.”  Joshua’s helmet was able to lessen the extremely harmful effects of his seizures with the protection the helmet gave his head.  Before Joshua’s helmet, at 6 foot 1 inch, he would fall like a tree straight down at the onset of a seizure.  There was no warning for him or for us.  We were able to catch him so many times.  But for those times that we weren’t quite fast enough, we could not always catch him and he had multiple gashes in his head and chin, broken teeth and two broken jaws.  After Joshua started wearing his helmet, he would still fall down hard from a seizure, but his new helmet saved him numerous times when we were unable to catch him. 

God has given us the helmet of salvation for our spiritual protection.  As we strive to do God’s will and understand His plan for us, we, like Joshua, can find ourselves resistive to putting on the armour of God.  When we do this and resist the protection of the helmet of salvation, it is easy to make wrong choices, to go against the plan of God, and to then fall down hard and face devastating and harmful consequences.  Just like one hard seizure could cause Joshua an injury that would take weeks or months of healing, one decision or choice could cause short or long-term harmful effects in our lives and in the lives of others.

We can remember and think of Joshua and his resistance to his helmet, because he did not have the knowledge or understanding of the safety the helmet provided for him.  We can then look to God and trust in His commandments and His guidance to help us choose the right path, knowing that He always does what is best for us, even when we may not understand, for our learning and growth, which will bring us joy and lead us back to live with Him someday.

The beauty of his smile in this picture shows Joshua's peace, his joy and his security even though the helmet was tough.  His smile symbolizes the joy of his very special journey.