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
#epilepsyawareness

Memory Monday - Heaven is Cheering You On!

An early bonding moment at Zion National Park!

Memory Monday

I miss my sweet Joshua boy and my wonderful Dad every day.  In thinking about a recent talk by Elder Jeffrey R. Holland, I love to think of these two buddies, Joshua and my Dad together again in heaven, cheering us on every day!  

Keep trying. Keep trusting. 

Keep believing. Keep growing. 

Heaven is cheering you on today, 

tomorrow, and forever.

https://www.lds.org/general-conference/2016/04/tomorrow-the-lord-will-do-wonders-among-you?lang=eng

Joshua loved his Papa!

Papa loved his Joshua!

River buddies at Zion National Park!

Wheelchair buddies!

Pure love and joy!

Piggy Back Rides - Even as an Adult!

Piggy Back Rides

Even as an Adult!

Uncle Doug or Shrub!

Many sweet and fun memories throughout Joshua's life was when he would ride on my back, relatives' backs, friends' backs and dare I say, probably a few strangers' backs.  He had no clue that he was 6' 1" with very long, lanky legs!!  And if he wanted a ride, well then he definitely would find the closest willing person.

On a more serious note, I did have to carry him on my back for a variety of other reasons.  If he was just too tired, he would flop down on the ground, and hew as just done walking.  Period!  

If he had a difficult seizure, he needed time to recover, so many times I was able to hoist him on my back to get him from the seizure location to a safer place.

And of course, if he had a difficult tantrum, or other behavior, sometimes that was the only way to divert his attention, or get him somewhere safer.  If you have ever seen one of these, you might remember some pretty serious hits from Joshua, but those did not bother me.  I knew it was his frustration at life, and not at me.  I called them "love taps."

One of my favorite scriptures in the Book of Mormon is Mosiah 24:14-15.  When the Nephites were feel burdened, they were told, “Lift up your heads and be of good comfort for I know of the covenant which you have made unto me, and I will covenant with my people and deliver them out of bondage.  And I will also ease the burdens which are put upon your shoulders that even you cannot  feel them upon your backs.”  That’s why I could hold him on my back.  He was not heavy.  He was not a burden.  And I loved doing it.
http://joshuasheartfullofhugs.blogspot.com/2013/01/funeral-talk-excerpts-by-joshuas-mom.html

I loved carrying Joshua on my back!

Uncle Mark - a front piggy back - A Classic  Moment!

This is how to get Joshua to get him to take his t-ball picture!

Even on Doug's wedding day!

And cute Aunt Debbie was about one foot shorter than Joshua!

My wonderful family was always there to give a back to Joshua.  This was an incredible, sweet blessing to me, and to Joshua.  Here are some of my favorite piggyback photos.  

Jacob's Hug from Heaven

Jacob's Hug from Heaven

My son Jacob sent me a touching text message today:

"Joshua said hi to me today" with the picture below:

I can see Joshua with his arms outstretched yelling out "Ja-tob" with his big, loving smile.  He loves his family!  There is no doubt that Jacob felt that hug from heaven today!

And my heart just smiled as I thought of the beginning of our license plate journey.  The first personalized license plate was purchased by "The Uncle Mark" when Joshua was alive, and it said "WA HAPN" as we all loved to hear Joshua say, in all innocense, "Wa Hapn" when he would drop something, throw something, etc., etc.  He knew, yet he didn't know, what it meant!  With how much we loved that phrase, Mark bought the very first "Joshua" license plate.  

More license plates and stories are at this blog link:
http://joshuasheartfullofhugs.blogspot.com/2014/07/license-plate-fun.html

A Comical Drive-Thru Order -- Our Wienerschnitzel Story!

A Comical Drive-Thru Order

Our Wienerschnitzel Story

While it may seem simple to order food at a drive-thru fast food restaurant, it actually became quite complex with Joshua!  Since one of Joshua's favorite things was to throw anything and everything out any window or over any fence, or into any river, etc., etc. an open window was an invitation to find the closest items - no matter how large or small - and throw them very quickly and with great precision right out the window!

To be safe in my own car, the garage door opener was way deep under the front driver's seat -- and far enough under my seat that Joshua could not even see it or reach with his long, skinny arms!  My purse had to be also pushed under the seat or as far on the left side of me as possible.  If the kids dropped any toys, money, trash, etc., they were ready targets!  Items small and large could be thrown without notice! And with four younger siblings, we did have many items that were always in the car!  

So one day when we stopped at Wienerschnitzel to get some hot dogs, I had the usual problem of trying to figure out how to place the order without losing the very throwable items within Joshua's ever-ready reach!  

I pulled up to the drive-thru window, and decided that if I only rolled the window down an inch, Joshua certainly could not throw anything out that window!  While I was leaning closely into my very small window opening and talking loudly to place my order, a worker came out the back door.  He noticed me, noticed me talking at the top of the widow, stared with great confusion for a moment or two and decided he certainly needed to give me a little help!

While using his arms very dramatically to show me how to roll down the window, he also yelled very slowly to me these words:

"You have to roll the window down!"

All I could do was smile, give him a little wave and a thanks, and laugh to myself!  Of course I looked like a silly mom trying to place an order through a tiny little opening in the window!  He was so kind to try to help -- just think if we didn't know!

And Joshua, as always, was totally oblivious and completely innocent!  He just wanted his french fries and root beer!

I can only imagine what he told his co-workers about how it certainly was a good thing he walked outside and helped that poor lady and her five kids who were trying to place an order through a closed window of all things!

Oh well, we probably needed to lighten their day.  Joshua -- your fun and unique ways certainly brought great adventure and sweet memories!!

So if you ever see me placing my order through a tiny little opening in the window, I am just missing my Joshua boy!

"Remember Joshua's Encouragement"

Jeremy ... Jacob ... Janson

"Remember Joshua's Encouragement"

Miracle at LDS General Conference

On Sunday, April 3, 2016, my beautiful daughter, Jamie Eisenstat, was making her debut in the Mormon Tabernacle Choir!  Well, this was so exciting for all of us!  Jamie had worked so hard, and although auditions for the Choir are extremely rigorous and demanding, she made it!  I was looking so forward to this special day to see her at General Conference and completely joy in the thrill of her performance with this incredible Mormon Tabernacle Choir!

My handsome sons, Jeremy, Jacob and Janson were there with me, which is always extra special.  As a single Mom, I always love this precious Mom time no matter how old they are!!  And through my wonderful friend Kristy, we had seats on the 9th row!!  In fact, we laughed because when we picked up our tickets, we were told, "oh ... YOU have the red tickets."  We didn't know what that meant.  But they joked that we would need an escort to our seats.  Well, we basically did!  We kept walking closer and closer to the front, and there we were -- in the middle, 9th row back!  We could see everything so clearly!

I cried tears of joy as Jamie walked to her seat with the Choir!  This was incredibly special and such a joyous Mom moment.  I was sitting with my boys, supporting Jamie and I was so thankful.

And we were close enough to see her so well!  And she could see us!!  This moment cannot be adequately described it was so incredibly wonderful and special!!

Jamie was beautiful.  Her countenance was filled with light!  I am still in awe and gratitude for this wonderful blessing in her life, and all of her lives!


But I always have a little sadness in my heart that all of my children will never be all together on these special occasions.  So on this very special day, I prayed in my heart, that I would feel Joshua with us today.

The second to last speaker was Elder Paul V. Johnson titled "And There Shall Be No More Death."  He spoke tenderly and lovingly of his daughter Alisa who died of cancer.  His words were powerful and hopeful.  I thought of my Joshua, of my Dad and the great hope that they are whole, happy and we will see them again.  He said:

I am grateful for the blessings that are ours because of the Atonement and Resurrection of the Lord Jesus Christ. For all who have laid a child in a grave or wept over the casket of a spouse or grieved over the death of a parent or someone they loved, the Resurrection is a source of great hope. What a powerful experience it will be to see them again—not just as spirits but with resurrected bodies.

https://www.lds.org/general-conference/2016/04/and-there-shall-be-no-more-death?lang=eng


The final speaker is a favorite, Elder Jeffrey R. Holland.  He spoke about looking at the audience, and that became very personal that day!  I truly felt like he saw all 4 of us, on the 9th row and that he somehow knew us!  And then he gave us all a great and powerful pep talk on perseverance, and faith, and miracles!  He is so inspiring and powerful.   Part of the way through his talk, he stated:

 Keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. 
Heaven is cheering you on 
today, tomorrow, and forever.

(We have Joshua and my Dad cheering us on!!)

And then to become even more personal, he further stated:

If gospel standards seem high and the personal improvement needed in the days ahead seems out of reach, remember Joshua’s encouragement to his people when they faced a daunting future. “Sanctify yourselves,” he said, “for to morrow the Lord will do wonders among you.”  I declare that same promise. It is the promise of this conference. It is the promise of this Church. It is the promise of Him who performs those wonders, who is Himself “Wonderful, Counsellor, The mighty God, ... The Prince of Peace.”  Of Him I bear witness. Of Him I am a witness. And to Him this conference stands as a testament of His ongoing work in this great latter day. In the name of Jesus Christ, amen.

Left

It was as if I could hear Joshua saying those words of encouragement personally to me.  And saying "I love you Mom.  I am aware of your heartaches and struggles.  And I am here for you."  Joshua's understanding of the plan of salvation and the promises of eternity are beyond my comprehension now and I know Joshua really is cheering me and my whole family on!  I felt a greater faith and joy at the promises of miracles and blessings.  I am so very, very thankful for this personal blessing and power of Elder Holland's words, and the incredible miracle of feeling all 5 of my beautiful children together that special day.




https://www.lds.org/general-conference/2016/04/tomorrow-the-lord-will-do-wonders-among-you?lang=eng

The Best High Fives Ever!

The Best High Fives Ever!!

And Joshua proceeded to high five every girl on the opposing team's bench.

A fabulous bowl for Joshua!
And I loved our high fives!

To know Joshua, was to know he also loved high fives!!  And to greet Joshua meant you never knew if you were going to get a hug, a high five or a handshake!  But that was so fun!!  And he was equally enthusiastic about each greeting!  He would most likely be clumsy in his high five greetings, but he made up for it in enthusiasm, in his loud and infectious laugh, and in his pure love and joy that accompanied all of his greetings!

A favorite memory is told by my brother, who was the Girls Basketball Coach at Pleasant Grove High School:  "I think everybody's talked about how Joshua loved to give high fives.  Well, in the middle of a game, Selma was late bringing Joshua.  I was standing up – I can't sit down during a game.  And I look over at the entrance, and I see Selma and Joshua walk in.  And Joshua proceeded to high five every girl on the opposing team's bench."

Opposing teams, strangers and even people who were mean, didn't stop Joshua from sharing his love and enthusiasm.  I remember this moment well, and was so proud and happy to be his Mom!!

Here are a few pictures of high fives caught on camera!!

Bowling with my brother,
Uncle Doug Larson
(High fives even came after gutter balls!!)

High fives for my brother,
Uncle Carl Larson who was Joshua's computer fixer hero!
(He had probably already given the high five!)