Saturday, August 13, 2016

Seems Like Forever Child Ago...

Time is a sort of river of passing events, and strong is its current; no sooner is a thing brought to sight than it is swept by and another takes its place, and this too will be swept away - Marcus Aurelius
Over the past twelve years, a myriad of events have come and gone, some never to be forgotten, and others barely remarkable in the vast expanse that is our individual memory. For instance do you remember when you last owned, or watched something, anything, on a VHS tape? Or, where you were on September 11, 2001? Do you remember any of these other events that have occurred in the past dozen years?


  • Facebook was launched
  • Sumatra earthquake caused the tsunami which devastated Indonesia, Sri Lanka, and Thailand

  • YouTube was launched
  • Pope John Paul II died
  • Prince Charles married Camilla Parker Bowles
  • Hurricane Katrina
  • First successful face transplant

  • Twitter was launched
  • Pluto was expelled from the "United Federation of Planets 'cause they [didn't] speak English anyways"
  • Saddam Hussein executed
  • The "Housing Bubble" burst

  • Britney Spears shaved her head
  • The iPhone made its global debut
  • Virginia Tech University campus massacre
  • Harry Potter and the Deathly Hallows is published
  • Barack Obama was elected President
  • Bernie Madoff, made off with $18 Billion in the world's greatest Ponzi scheme
  • The cyclone Nargis made landfall on Myanmar's west coast killing 138,000 people
  • The Olympic flame was lit in Beijing China
  • The King's of Leon used somebody
  • General Motors filed for bankruptcy, and Chevrolet, following a US taxpayer bailout of $51 billion, literally became "America's Best Trucks"
  • Blu-Ray disc hit the consumer market


  • The King of Pop, Michael Jackson, died
  • The Fort Hood Massacre
  • Sarah Palin was the Republican Vice Presidential Nominee

  • Wikileaks and Julian Assange leaked into the public view with the publication of 400,000 pages of classified information known as the "Iraqi War Logs"
  • Deepwater Horizon, also known as the BP or British Petroleum, oil spill oozed 210,000,000 gallons of oil into the Gulf.
  • While the Gulf awaited its own bailing out, the European Commission, European Central Bank (ECB) and International Monetary Fund (IMF) bailed out the country of Greece for the measly sum of $122 billion.
  • A devastating earthquake struck Haiti killing around 160,000
  • An earthquake off the coast of Chile sent a massive tsunami inland killing 550 people
  • Adele rolled in the deep
  • The King's Speech won the Oscar for Best Picture, Director, Screenplay, and Best Actor as Colin Firth showed us just how to speak the Queen's English.
  • Following an earthquake, a tsunami struck Japan causing untold destruction including the Sendai nuclear meltdown 
  • Prince William married Kate Middleton
  • Osama bin Laden was killed
  • The 99% Occupied Wall Street
  • The Space Shuttle took its last flight
  • Aurora Theatre massacre
  • Sandy Hook massacre
  • Hurricane Sandy moved from the Caribbean to Canada and all coast line points in between and unleashed her $75 billion wrecking ball of destruction, taking 233 lives
  • The US Embassy in Benghazi was attacked
  • Boston Marathon bombing
  • Edward Snowden leaked CIA information
  • The Ebola virus began its destructive spread along the west coast of Africa
  • Prince George Alexander Louis of Cambridge was born
  • Jordan rolled as Twelve Years a Slave won the Oscar for Best Picture
  • The Olympic flame lights up Sochi Russia
  • Malaysian Flight 370 disappeared
  • The [Un]Affordable Care Act (Obamacare) began leaving its mark, and hasn't stopped yet.
  • Germany wins the FIFA World Cup
  • The Baltimore Riots
  • San Bernardino massacre
  • Airbus A320-211 crashes in the French Alps, killing 150
  • A magnitude 7.5 earthquake strikes the Hindu Kush region and causes 398 deaths (279 in Pakistan, 115 in Afghanistan and 4 in India)
  • The Zika virus outgrew its narrow equatorial-Africa belt and spread to the Americas
  • Princess Charlotte Elizabeth Diana of Cambridge is born
To be honest I didn't remember many of these, and some of them seemed so commonplace, I couldn't really think of a time they didn't exist. What should be one of my barely remarkable memories is that since March 2004 we have not owned a VHS player. See, I told you it was a barely remarkable memory. But why do I remember it so well?

To tell you the truth I didn't remember it that well, I had to sit and think about it following an experience my wife had with Ethan. While at his day program Ethan was taken on a field trip to Savers. There, with approval from the store, he was allowed to look through the DVD cases and take out all the filler papers. We have literally hundreds of these papers in our house. They get collected, carried around, and eventually will get laminated and cut into small images, then get carried around in a ziplock baggie for months and months.

If you ever see us in public, most likely, if you look close, you will see a small bulge just above Ethan's waist. There, underneath his t-shirt, he secures his little of baggie of images. He accesses them by reaching his arm down through the neck of his t-shirt. Presently there are two baggies of images down his shirt.

Well, during the Saver's trip, Ethan came across a filler that referenced an old video game. A video game which happened to have made its public debut two years before he was born. The announcement, rather commercial, for the Game Boy Pagemaster video game was part of the previews on The Pagemaster VHS tape. The Pagemaster is one of Ethan's all time favorites, but we haven't owned or viewed on VHS since 2004. 

After getting home from the field trip my wife asked Ethan what he did for the day. Here is what happened... (turn up the volume)


Here's a segment of the original VHS I found on YouTube - which by the way Ethan didn't know was available on YouTube.


Now, that's what I call a memory. No in fact I would call it a FOR-Ev-ER Child memory!

Sunday, July 24, 2016

Forever Child

Earlier this month, while driving to Camp Lo-Mia for girl's camp Evie and me had a friend, Sarah, ride up with us. As we drove we had an opportunity to talk, and we got on the topic of special needs children. Just as we were descending the mountain into Camp Verde, Sarah made a comment that stuck with me. She had mentioned that they too have a "forever child" in their family.

For a second I was caught off guard by the phrase. Then, as I played it again in my mind I was taken aback by the sweet utility of such a phrase.

I've never liked saying "we have a son who is autistic," because it is a lie. We have a son, and he has autism. It is a condition he has, not what he is. Daniel Gottlieb, in his stirring Letters to Sam, wrote about such labeling:
A couple of weeks after my accident, I was lying in my hospital bed and I heard my doctor in the hallway saying, "That quad in 301 - did he get his medication?" Just a couple of weeks earlier I had been Dr. Gottlieb in some circles. In other circles, Dan. In others, Daddy. And now I was "the quad"?
Well, Sam, over the years I have learned that I am not a quadriplegic. I have quadriplegia. You are not autistic. You have autism. Because of our labels, some people will be afraid to approach us. Others will be cautious about talking to us or trusting us. With my spinal cord injury and your autism, we look different and act different. But we can also teach people...that no matter what happens to our bodies or our minds, our souls remain whole.
I am in full agreement with Dr. Gottlieb about potentials, and labels, though I have felt the air rush out of the room when the proverbial elephant enters as the word autism is used. To avoid such uncomfortableness, not for me but for the others in the room, I try to be a little gentler in speaking of our son. I occasionally refer to him as our little rainman, or simply say we have a special needs child. then if they ask for clarification, we drop the autism word and take it from there.

But hearing Sarah's phrase - forever child - I could see the efficacy of such a sweet phrase. It at once captures the essence of Ethan. He is a perpetual 7-year-old in an ever growing adult body. He wears man sized clothes, can grow a simple beard in just a few days if left unshaved, yet he still needs assistance showering, and occasionally wiping. He still loves Elmo, plays with Legos, carries around a ziplock bag of cartoon pictures from the Internet he cut, pasted, printed, and laminated. He still wants to cuddle while watching Muppet Treasure Island, hates the scene in October Sky where Homer Hickam and his dad yell at each other, and cries when Little Foot's mom dies in The Land Before Time; truly he is a forever child.

But all of this talk about forever children is simply a culmination from events which took place this past May when Ethan had his birthday. It is not that shocking that he had a birthday, since he has had them every year in May for the past two decades. But this past birthday Ethan turned 20. He officially exited the teenage years.

But, not so fast - as most things work in this house. Somebody was not too happy about turning twenty. This conversation with me, or other conversations like this, took place whenever he was asked how old he was going to be:

     Ethan, how old are you going to be on your birthday?


     Aren't you already nineteen?


     So how old will you be on your birthday?
     Won't you be twenty?
NO! I don't want to be twenty. I don't want to be a man. I want to be a little boy forever. I don't want to be old like you, or grandpa, and walk like this [begins walking with an imaginary cane and slumped over with a sore back]
     You know sweet boy, I'm certain you're going to get your wish.
But, let's be clear. When I say forever child, I don't actually mean forever. Believe me I KNOW this won't last FOR-EV-ER. You see, when Elder Jeffrey R Holland spoke in General Conference in October 2013, in his talk "Like a Broken Vessel" I didn't hear him speak about depression, or mental illness, as most did, I heard the Spirit speak about autism.
I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last."
That is a day I look forward to, but for now, here in mortality, and all the todays and tomorrows that will come before "that day" arrives, he is and will be my Forever Child.

Wednesday, December 30, 2015

The Force, it's calling to you. Just let it in.

The other night we got together as a family and saw Star Wars: The Force Awakens. In preparation for the movie #ImDatingSeth brought over Jedi robes and lightsabers. The plan was He and MoKo would wear them to the theatre. 

MoKo, Jedi Master
It was a wonderful idea since it was chillingly cold that night and the robes were nice and warm.

However, upon realizing what the items were Ethan became excited and asked MoKo if he could wear it. She obviously couldn't resist his request and happily helped him dress in the robe. 

Almost instantaneously Ethan became Obi-Wan Jinn (yes, a mix of two Jedi masters). He stood up tall, pulled the hood over his head, gently folded his hands holding them close to his waist, and began walking proudly towards the theatre. As traffic approached he lifted his right hand and swept it gently in front of his chest, his thumb and two fingers extended in perfect Jedi-mind-trick fashion.

Once inside the theatre Ethan couldn't resist admiring himself in the reflection from the entrance doors. Unfortunately this need to admire himself also put him in every body's way. I asked him a few times to step out of the entrance so that he didn't get in people's way. This didn't go well when I asked him the third time to please step away from the entrance. Turning, he waved his right hand, thumb and two fingers extended, across his chest and declared:

     Dad, I'm using the Force to tell you to get away from me.
Sorry, but the Force needs you to step out of the way. You can admire yourself in the reflection back here.
He stepped away from the door, and found a new place to admire himself in the reflections. That lasted about five minutes - or maybe just two. The next time I looked up he had moved back into position right in the doorway. By now more people were entering the theatre. I stepped towards him and asked him to move. In his best put-out-whine he slowly said,

Thank you! Now, please stay out of the doorway.
Not more than two minutes later, he was back, proudly admiring himself in the reflection as he blocked the entrance. Not feeling very patient by now I stepped towards him and told him he needed to move or we'd have to go home, since he couldn't mind. Turning, he squarely faced me and once again waved his hand at me:

     Dad, get the %$#* back!
Nope, sorry, even with bad words added to it the force doesn't work that way. You need to get out of the doorway!
Reluctantly he stepped back out of the way, and luckily they began letting us through with our tickets. We took our seats, the movie began, The Force Awaken[ed], and it was fantastic!!

It is often said that Star Wars ideals and Latter-day Saint theology have close resemblances, such as the guidance of the Force and the guidance of the Holy Ghost. Consider how Star Wars portrays mankind as infinitely greater than the fallen worlds on which we live. It was Yoda who taught,
Luminous beings are we, not this crude matter.
President Dieter Uchtdorf recently spoke of the divine destiny of man.
There seems to be something inside of us that resists endings...Why is this? Because we are made of the stuff of eternity. We are eternal beings, children of the almighty God.
Since seeing The Force Awakens, Ethan has been on a superpower kick. That is how it usually goes. He'll be focused on something, say the movie Marley and Me which he got for Christmas - since opening that present he has watched the movie ten times, at least. The moment he finishes it he starts it over again. This "focus" will go on for days, weeks, or sometimes months at a time, before he moves on to a new topic.

Well, since the movie, he focused on superpowers for nearly two weeks. Just the other day he began printing off something from the computer. It printed for a rather long time. After it stopped he stapled it, and proudly announced:

     Dad, wait 'til God sees my list of superpowers He's going to give me!
Oh, I'm sure he will be so excited! What kinds of superpowers?
Taking a look at his 20-page "Superpower Guidebook" he plans on giving God, I was fascinated by some of the superpowers he was able to search on the Internet and included in the list. Among the 375 superpowers he listed were:
  1. Regenerative Healing Factor
  2. Amalgamation
  3. Additional Limbs
  4. Body Part Substitution
  5. Self-Detonation (that one's gotta hurt)
  6. Fat Manipulation (I seriously could use that one!)
  7. 360-Degree Vision (All mothers already possess this power)
  8. Emotion Vision
  9. Omnilingualism
  10. Ancestor Evocation
  11. Perspicuity
  12. Psionic Inundation
  13. Deoxygenation
  14. Cloaking
  15. Reality Warping
  16. Concussion Beams
  17. Hell-Fire Manipulation (a close cousin to Can-Of-Whoop-#@$ Manipulation)
  18. Age Shifting (another very useful trait)
  19. Dermal Armor
  20. Self-Liquefication (kind of like we feel in August in Arizona)
  21. Xenarthra Mimicry (the ability to turn one's self into an armadillo, sloth, or aardvark! Heck YES!!)
  22. Candy Mimicry (for those sweet tooth cravings), and of course the classic Godly standbys
  23. Omnipresence,
  24. Omniscience, and
  25. Omnipotence. 
Coming up with the list of superpowers was the easy part. Now he is struggling with what to have God call him once he gets all those superpowers. He's narrowed it down to four possibilities:
  1. Mega Super Ethan
  2. Captain Ethan
  3. Captain Mega Super Cool Boy, and
  4. Captain Wonder Boy
I'm partial to number 3, but only because it reminds me of the names of classic 80's Rappers like Grandmaster Flash and the Furious Five and DJ Jazzy Jeff and the Fresh Prince!

Though there is an obvious childlike genuineness in Ethan's desires, I can't help but recognize the divine potential in at least some of those powers.  Consider this in light of President James Faust's comments from an April 2002 General Conference address:
Great things, can happen to you, even beyond your fondest dreams and expectations! Often we do not have even a glimpse of our potential for happiness and accomplishment in this life and in eternity...We must recognize that our natural gifts and abilities are limited, but when augmented by inspiration and guidance of the Holy Ghost, our potential increases manyfold. You need help from a power beyond your own...We may not be fully aware of what the Lord has put in our “inward parts” and written in our hearts.
We would all do well to keep Ethan's youthful innocence when it comes to contemplating those Heavenly glimpses. Remember,

The Force, it's calling to you. Just let it in.

Sunday, December 13, 2015

The Worth of a Soul - #EthansTransfer

One of the anticipated events in a young man's life, especially if he is a member of The Church of Jesus Christ of Latter-day Saints, is turning nineteen - that age, historically (at least for the past several decades), has always been the age when a young man was eligible to serve as a missionary.

Since Ethan was first diagnosed with Autism at the age of six, my wife and I had accepted the truth that there would most likely be many milestone events in Ethan's life that would either not occur on the same timeline as other young men, or realistically, not happen at all. Occasionally we have those back-of-the-mind pauses when those milestone moments come and go without their usual fanfare or recognition. To be honest, those pauses may sometimes linger, but they never stay too long. Because they are always followed up with bright flashes of his divine potential and identity.

A few years ago I shared the words of Ian Brown (The Worth of a Soul and The Worth of a Soul - Revisited), who wrote of coming to find the "redeeming value of his [son's] life." In finding that answer he wrote:
. . . The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.
Well, as you can guess, because I'm writing about it, one of those back-of-the-mind pauses happened this year, as Ethan turned nineteen. Well, in July it was ushered away by one of those bright flashes of his divine potential and identity.

It all started with an e-mail we received from a missionary serving on the other side of the world... 
With his permission I share it:
I will start off by saying God will humble us very quickly if we are not humble. This week I am glad I was taught this lesson because it has change my mission.
So this happened Thursday. The day of transfers. I wanted to be transferred kind of badly to experience a new area (he felt tired and the area, to him, was feeling mediocre). So I will ever be grateful to a young man I have never met. I will ever be grateful to a young man who has one of the greatest spirits I have ever felt. I was taught a lesson I will ever be thankful for in life and will never forget. 
I was sad I wasn't getting transferred. I wanted to meet new people and a new area. So Thursday for lunch we cleaned up the flat a little bit. I found some old Ensign magazines. I thought I could go through them and find a picture or quote to put on the front of my new planner. As I got home Thursday night I grabbed one of the Ensigns. It was in the middle of about six of them. I randomly opened to a page that said in big words.
I thought to myself, "No way." I immediately thought of Ethan Kornegay. I then saw it was written by Jeff Kornegay. Then it said he lives in Arizona. 
So, as I read the article I was taught a lesson. The lesson the Lord decided to teach me that day was: 
  1. I need to love everyone I come in contact with and continue to love my ward I serve in and my investigators.
  2. I need to remember the things that matter most in life. 
  3. Never let things get in our way. We are all the same. We are all daughters and sons of a King. 
I want to live my life like Ethan. Honest, innocent, kind, live a life of love, not judgmental, see everybody equally and render to help without hesitation. As I read the article I felt of his wonderful spirit. It was like he was right next to me.
My wife replied to this touching email:
Oh, Elder...we are speechless. Not sure how to respond to your email. How touching...and more than anything else, thank you for sharing your sacred experience with us. As you know, Ethan will not serve a normal mission - at least not like most other young men in the church. However, I do know that he does still have a mission on earth to fulfill, it's just a different kind of mission. A short statement from Ethan's patriarchal blessing says that through his actions and through him just being himself, he will touch lives. We have had a few people over the years express to us similar sentiments as you did. As his parents, we are thankful and humbled for these occasions shared with us. It is a confirmation that he is fulfilling his mission and his patriarchal blessing in his own sweet way.
Our Elder replied,
Well I want you all to know that he has touched me this week. I have never met Ethan before but I felt his spirit so strong when I read that article. I felt of a spirit of much much love. So I am just another example of him touching people's lives. Who knew he could touch my life as I am down under the earth right now...This will be a lesson I will never forget...Please tell him I say hi and send my love. 
...This transfer will be known as #EthansTransfer

Friday, December 11, 2015

PEDIATRIX - a perfect fit

What every 19-year-old young man wants for his birthday is a nice kidney stone. I know, right?

We knew something was wrong when Ethan first went to the bathroom and it looked like red kool-aid in the toilet. In my profession we call that a "clue." The only problem, and the one that kept stumping the doctors, was that he didn't express any pain. The closest he came to expressing any kind of pain was to say, "I have a cramp." He would then go lay on a heating pad and the cramp would subside. That was it! No fussing, no wincing, nothing outward that he was suffering pain of any real intensity.

His Doctor examined him, thought it might be kidney stones, but without the pain, he was as perplexed as we were. Over the next few days the "cramp" he complained about came and went, and came and went, a few times. Again he never fussed about pain, and the kool-aid color of his urine even subsided slightly.

Eventually we were left with instruction that if any of the symptoms got worse that we were to call immediately. Well, it didn't take much more than two hours.

Ethan was walking up the stairs, getting ready to turn down the hall to his bedroom, when I saw the first real sign of pain. He noticeably winced! 

We called the Doctor and he directed us to go to the nearest hospital. We headed down to the closest hospital, and within minutes, Ethan was being taken back to a room - luckily we live near a recently opened hospital that doesn't get much traffic and were the only people in the ER.

The ER Doctor performed a quick examination and asked the million dollar question: 

     On a scale from zero to ten how bad is your pain?

          Uh, a four.

     A four?

          Uh, seven.


          Try Eight! 
          Heard enough...

Seriously, in the midst of being in an ER examination room, after peeing what appears to be blood, and most likely kidney stones, this kids is inclined to quote the Little Rascals movie at the Doctor.

Finally they brought in sign with a series of faces which ranged from a smile to a severe grimace. Asking him which face he felt like, he said, "Four."

Seriously? A four, again. Hmmm, maybe this kid has a high tolerance for pain, or it really isn't that bad.

A CT Scan was ordered and within 20 minutes of the scan the ER Doctor returned to advise us that Ethan was the proud parent of a 5 mm kidney stone.

* 5 MM *
Note to self, this kid has a super high tolerance for pain! 5 mm is the size of the pink eraser from a No. 2 pencil! Passing a 5 mm kidney stone would be like trying to fit a racquetball in your mouth! It could be done, but YIKES!!!
Besides the fact he was trying to birth a Volkswagen Beetle through a fire hose, the ER Doctor indicated that the stone was lodged in the Ureter just past the Renal Pelvis (the junction where the Calyces join together forming the Ureter). The removal of the stone would require surgery.

Within 40 minutes, our trip to the ER turned into this:

And 20 minutes later to this:

Ethan was transferred from our hospital to a sister-hospital just down the road. We arrived and were immediately taken to a room, where arrangements were made to help the discomfort and surgery was schedule.

While waiting, word got out, and a few close friends came to visit.

When Ethan was advised he was having surgery, his anxiety level rose, and he began firing off twenty-questions:

          Are you going to use a knife?

         Are you going to use a sword?

         Am I going to have a scar?

        Are you going to cut me with scissors?

Eventually the nurse, understanding that she was dealing with some special needs, and tried to gently explain the procedure in more descriptive terms. It didn't take long for Ethan to grasp the significance of what she was telling him:
No, we won't be using a knife. In fact we won't cut you at all. The Doctor is going to take a small tube and insert it into your penis...
Ethan's eyes got real big and then he shuddered. He clearly understood!

By morning, when the Ureteroscopy was scheduled Ethan seemed in great spirits. In Pre-Op he got quite the kick out of wearing the hair net...

Surgery was successful. The stone was too big to remove, so the surgeon broke it up, left the fragments in place, and placed a stent within the ureter to aid in passing the fragments. Needless to say this left him a little worn out, but luckily his BFF was there to cuddle with him.

During the night Ethan passed the stone fragments with the help of the stent, and even coined a new phrase for that sensation when you are peeing, the stone blocks the urethra, then suddenly gives way and exits, allowing the stream of urine to continue. He calls them: "Pee Farts!" And yes, he attests that they still hurt, regardless of the stent!

By the next morning Ethan was feeling better. 

JC May, a friend of Mo's, heard about Ethan, and not wanting his birthday to go unrecognized brought over a full-size Costco birthday cake! Chocolate of course! Ethan was ecstatic and eagerly ate two, or three, pieces.

He was released and sent home. 

After a week of having the stent in, it was time to have it removed. Ethan was given some "relaxing medicine" before we headed over to the urologist's office for the removal procedure. 

What should have been a two minute procedure never happened. They had booked us for the wrong day! We went home, waited it out over the weekend and by the next Monday we were back at the urologist where the stent was removed.

Throughout the ordeal I marveled at how kind the medical staff was, and how quick they were to recognize his special needs, and change their tactics to address his medical needs at his level. 

The other day I ran Ethan over to the pediatrician, and while observing Ethan on the exam table, I had a chance to think. We've been going to the same pediatrician for the past nineteen + years. Since day one, Ethan has seen Dr. Harold Magalnick MD, FAAP. He was always kind and attentive to Ethan. I remember how Dr. Magalnick would sit on the exam table with Ethan, when he was about three, and while talking to us, nonchalantly check Ethan's ears, nose, etc. His examinations were thorough, but always relaxed, and fit perfectly with Ethan's autistic ticks, nuances, and tendencies. Over the years Dr. Magalnick has attended IEPs, assisted us in reviewing service plans, and was our advocate in the guardianship hearings. 

Shortly after the kidney stone experience I broached the subject of Ethan getting older, and if it was time to make a change to a family practice doctor. Dr. Magalnick, smiled, and gently remind me that age was not really a factor, and his office was well equipped for Ethan, and though he is nineteen he was still a perfect fit at PEDIATRIX.

A Perfect Fit?

I know, right?