Christopher

Months ago, my dad called a family council on a Sunday evening.

In my parents, living room, all nine of us siblings and spouses 

listened as my dad began saying that the last time we had a family council

similar to this was when

 "Cubby was in her accident almost eight years ago."  

I then knew that whatever my dad was going to say was going to be bad.

We knew my brother Topher was having health problems; 

his back hurt all the time, and it was beginning to be hard for him to walk.  

Occasionally, he'd text us siblings and request our faith 

and prayers since he was in a lot of pain and 

unsure of what was happening.  

My little family began fasting for him every month.

Topher sat at the head of the room with his wife Lisa

 beside him and began talking about tests, doctors, and hospital visits,

 and then my mind started spinning. I felt sick.  

I felt hot but was freezing, and mostly, I just wanted this 

moment to stop- especially before he told us 

what he had discovered about his health.

Christopher had been diagnosed with ALS.

ALS is a terminal disease with no cure. 

Topher and his wife Lisa had known about his diagnosis for some weeks 

and had already begun processing what this meant for them for

their family, and for the rest of their lives.

As Toph talked more and more about what ALS meant

 I wanted to get up and run away.

I had similar feelings when I was bound and intubated in the hospital.  

People would talk to me and about me while I just lay there 

frozen, unable to move or speak.  

I often imagined myself getting 

up in a hulk-like frenzy, ripping all the tubes

out and away from me so I could run far. 

So far away that my painful and disappointing reality magically disappeared.  

I felt like the faster I could run, the more I'd get better and stronger.

One night, I attempted this and was subsequently given a babysitter 

to sit in the corner of my room for the rest of my hospital stay

because I was a danger to myself.

Running away played over and over in my head as all of us siblings took in

Tophers new challenges and limitations.

I wanted to run away right then, and I wanted to take Christopher along with me.  

I wanted to throw his cane away, grab his hand, and run out the door faster 

and further away from the situation we were in.

"Christopher, run!" I'd yell, 

"Faster, Topher! Faster, hang on to me; 

your legs will work again, and soon, 

your body won't stop; just keep running with me." 

After the meeting, everyone went home except

 me, Christian, Topher, Lisa, and my parents, 

I was crying and attempting to explain to Topher 

how I felt about running away. 

The use of my dramatic imagery was hard to understand.

But it made sense to me.

We talk and read about Christ breaking the bands (or chains) of death and 

"rising with healing in His wings." 

I know that one day, our failing bodies will be perfect again.

 Christopher and I both believe this because we have faith

 and hope and believe in Christ.

The scripture in Matthew 28:6 has come to mind several times 

since our family counsel.

"He is not here: for He has risen."

Christ has overcome the sting of death through the Resurrection.

I believe this and know through His miracle that Christopher won't suffer

from ALS forever. It will not be the end. 

Christopher will be made whole again.

"(Our) 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".

-Jeffery R. Holland

Now, Christopher is a creative genius.  

He acts (Paul in the Bible videos) and has directed 

some of the most creative plays I've ever seen.

A few years ago, he directed "Xanadu" (please tell me you know what Xanadu is). 

As a benefit for Topher and his family, Xanadu is coming back!!

Most of the original cast are flying in from all over to help raise money.

 To get tickets or see how you can help, please go HERE!

Happy Weekend!

XanaDONT get ALS.

The worst part about living over 2000 miles

 away from ALL MY siblings

in Utah is that I miss out on amazing events 

especially when my brother Christopher is involved.

And there is a very special event happening next weekend:

XANADU.

Topher sent this message out to his friends and family,

 and I want to share it with you:

"People are posting golden shirtless pictures of me and talking about Xanadu.

 I realize I should give you more more context!

.

I directed a production of Xanadu at the Orem Hale Center Theatre in 2011. 

It's probably the nuttiest, most ridiculous thing I've ever done, 

and that's saying something. 

It's based on one of the worst movies ever made made: 

a 1980 musical romp about Olivia Newton-John as a Greek 

muse on roller skates, featuring music by the Electric Light Orchestra. 

It's a cult classic. I grew up with a group of friends who watched it religiously.

.

After my diagnosis in 2016, my good friend and choreographer

 asked me what would cheer me up. I told her I wanted to see Xanadu again. 

So she heroically remounted it. 

Most of the original cast returned, some taking a leave from Broadway to do it.

 It was exactly what my family and I needed.

.

Three years later we're ready to laugh again!! 

The gang is getting back together for five shows only, Sept. 25-28, 

at Hale Center Theatre in Orem. It's a late show so drink a Red Bull 

and DRESS 80's if you want!! 

It's a total riot and I give you my word: 

You've never seen anything like it. 

Lisa and I will be at every performance to say hi!!

.

Proceeds go to the Rocky Mountain ALS Chapter, 

a local organization that assists families dealing with this BS disease.

.

Buy tickets at 801.226.8600 or online at halecentertheatre.org.

If you live in Utah, you NEED TO SEE THIS play.

It's so strange, and so weird, and so funny, and so Topher!

If you go, will you PLEASE give him a hug from his favorite

sister wayyyy out here in North Carolina!!!??

ALSO: He typed the above message with his eyes

on his fancy eye tracker interface computer!!!!

Pure Magic

How do you say goodbye to a brother?

How do you write something to honor him and 

convey feelings in the most delicate parts of your heart and soul?

It isn't possible.

With Topher's diagnosis of ALS, we knew this day would come,

but it never seemed like it was really going to happen, and then

one late night the phone rang, and that was the end.

And that's how it was.

Earlier last week, I felt so uneasy, and deep down, I think

I knew it was the Spirit preparing my heart.

So I began writing down ALL the memories I had remembered

with Topher...so many memories.

My list grew longer and longer as the day went on, and today

my list grows still.  I am so grateful we had those times together.

After we moved, Topher was always so good at reaching out to me

and letting me know what was going on with his health.

We'd video call, and then when his speech became slurred, we began texting, 

and he was really good at that since he had fancy glasses that could

type words into a computer screen attached to his phone. 

He was always so upbeat and so funny!  

I seriously never thought he'd die.

While my siblings were saying their goodbyes

to Topher in Utah, I walked around the Home Depot parking lot in Durham

sobbing and praying aloud while my Nies had dinner at a nearby restaurant.

Topher left us that night under a full magnificent strawberry moon.

My heart is heavy, and it hurts.

Life won't be the same without him.

In our family, he was the funny one. 

He was clever.

He was a unifier.

He was compassionate.

He was talented.

He was creative.

He was pure MAGIC.

I will miss him deeply.

I hope he gets a glimpse of the impact he had on people

because it was beyond huge.

My heart is heavy as I think about his children;

Miles, Owen, Phoebe, Hugh, Margaret, and

 especially his love Lisa.

But my heart rejoices in the plan that we will be with Topher again.

Christ said:  "I will not leave you comfortless: I will come to you."

Once Topher wrote me a letter on my 30th birthday:

"You will see that being in your 30's is just like being in your 20's-

you just don't feel as much pressure to be awesome all of the time.

It's a great time to focus on the important things:

 raising your kids and watching TV."

Christopher played Paul in the Bible videos produced by the Church.

I love you, Christopher Layton Clark!

He just is.

Texting with my siblings is always funny, 

but when my brother Topher chimes in

our text threads are SUPER funny.

He is hilarious with incredible insight and humor, and that is  

especially amazing since he is living with the stupid disease ALS.   

I am constantly amazed at how upbeat and positive he is

even though he is constrained to a wheelchair, can't eat, walk, 

or even talk for crying out loud!

He is still Topher 100% and his texts prove it.

Sometimes his texts are about what people say to him

even though he can't talk back.

Or when they kiss his bald head, 

or kiss his cheek with stinky breath or with lipstick on.

It's pretty funny.

My oldest brother Steve is the tight ends football coach at BYU, and a few weeks

ago the team honored Topher as their "true blue hero".

BYU put together a great video of the team highlighting Topher, and 

I must have watched the video 200 times, smiling right along

with him (and crying too).  

(How I wished I could have been there with some of my other siblings).

Topher said after in a tweet after that

 his only regret was that he wasn't wearing his Thor costume.

I don't think he needs a Thor costume to prove

 how strong and amazing he is.

He just is.

Happy Birthday, Topher!

Tonight, we celebrated my brother Christopher's birthday.

 Honestly, I don't even know how old he is turning;

 he is just alive and doing well, which is all that matters to me.

Our family came to Fox Hill to swim, eat ice cream, and sing to our brother.

Months ago, when we found out that Topher was diagnosed with 

ALS, I asked Lisa what her favorite photo of Topher was.

She sent me this:

(Justin Hackworth)

Then I asked my dear friend and talented artist, Beth Allen,

to paint that portrait of him.  It turned out perfect. 

He and Lisa were happy with it.

We all commented (and loved) the details, like his 

freckles and the little gray hairs in his beard.

Topher, I love you so much.  

Happy birthday, my brother!

And then Lottie (the mouse) fell asleep.

It was a long day of cousins, swimming, and ice cream.

That's a lot for one mouse!

Glorified and Grand

Hours after we landed in Utah (and had Cafe Rio for lunch of course), 

I met most of my family members at UVU to tour the new beautiful

 Noorda Center for the Performing Arts.

My brother Topher had a very large part in this gorgeous building
coming to life; especially while he was the acting
 chair of the theater department before being diagnosed with ALS.

We followed Topher in his wheelchair along with
his good friend, and fellow colleague
who curated the tour for us since Topher is unable to talk.

We wandered through the beautiful large rooms, 

spacious concert and dance halls, and amazing theaters.  

But the very best part was saved for last:
The Christopher Clark Green Room.

This room is a comfortable space for actors to 

lounge in before they perform on stage.

Inside the room is an amazing bust of Topher 

done by the amazing artist J. Kirk Richards.

The bust of Topher's head sits near the door and acts 

as a good luck charm for the performers.

His hope is they rub is bald head for good luck.
(This is SO Topher).

He wanted us to know that it was NOT a death mask, but rather
him sleeping because in his dreams he is creating and preforming.

Also in the Christopher Clark Green Room is a gorgeous painting
(again by J. Kirk Richards),
 which is full of rich Topher symbolism.

(Topher and his wife Lisa make a special appearance

 on the bottom left of the painting).

My brother Christopher is AMAZING!

He communicates by wearing special glasses that can identify letters

on his computer screen attached to his wheelchair just by looking at them.

Then the letters create words which are read as text messages through a robot.

Through these short messages, we still enjoy and witness his
hilarious attitude and sense of humor!!

He is STILL the TOPHER I know and love!

I wish he could teach and preform in this new gorgeous facility,
but I know that he has created a powerful legacy
that will go on and on, and on.
He is lucky to be in the care of his wonderful wife Lisa,
and five beautiful children.
 I am so proud of him and everything he has done and accomplished.

I love him so much!  So much that sometimes it aches.
I am not very eloquent in my writing, and feel like
I have so much more to say about Topher, his illness, and
my family.  But not everything can or should be shared on a blog.

I was reminded several times during my time with Topher the beautiful

 words by Elder Jeffery R. Holland:

 "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.”

Spiritual Enlightenment: Like a Broken Vessel

All About Topher.

 Today while organizing the pantry and other places in the house,

 the mailman came to my door and dropped off a package.

It was from my mom in Provo.

Inside was my favorite licorice taffy, BYU bookstore chocolate covered

cinnamon bears, newspaper clippings of stories

she wants me to read, microfiber cloths to clean my new house with, 

BYU stickers and an extraordinary book all about Topher.

After he found out about his ALS diagnosis, my cousin Jayne 

began interviewing him to compile a book for his family and posterity.

I sat down and began reading immediately, and before I knew it 

45 minutes had passed, and I was nearly halfway through it.

Jayne had asked him questions about his earliest memories, life as a child,

the places he and my family lived, his friends, schools,

jobs, his travels, his talented piano career, his acting and theater life,

his mission in Finland, Lisa, his wife, his five children, our eight Clark

siblings and parents, and his testimony of Jesus Christ.

I've been reading a little bit each day because 

I don't want it to end.

I have to force myself to slow down to make it last.

I'm grateful that I can re-read this book a 

million times whenever I want to feel him close.

There have been so many times after reading a story he's told that

I've wanted to call and ask him about it 

or just laugh with him about something he's said or done.

I just talk to talk to him. I miss him.

I'm so thankful that his colorful

life lives on through this beautiful book. 

Part of Topher's testimony that touched me deeply:

"When people ask me what I've learned from these

last few years. I think: God is awake.

I cannot tell you how many times I have been comforted,

 strengthened, or encouraged

because of a brief prayer or silent plea for help.

I have been blessed with peace and stillness, sometimes in the middle of

the night. I testify to you that I have been entertained by angels, unaware.

To quote Longfellow's Christmas hymn:

"God is not dead, nor doth he sleep.""

One by One.

We were incredibly lucky to have FOUR General Authorities, 

including Elder Gerrit W. Gong, come to our stake to speak, 

meet and minister to us.

It was one of the best weekends ever. 

Because I serve as the Relief Society President in our congregation,

I was invited to a leadership conference on Saturday, where we were trained

and inspired by our service opportunities.

Elder Gong spoke first and told everyone in attendance that he wanted to 

personally meet everyone...hundreds of people,

and he did.

I was the second to last person he met and quickly shared with 

him that I was Christopher Clark's sister.

He and Christopher have a personal relationship because

they were once neighbors. Elder Gong was very

involved as Christopher's ALS worsened.

He took a few minutes with me shaking my hand and looking

into my eyes. I felt truly loved.

This is genuinely what the Savior would do.

We talked about Topher and how much we loved him. (We still do!)

Then he shook my hand again, asked me my name, and after I told

him, he said, 

"Oh, yes, I know you! You're famous!"

I hope my efforts in publishing peace are effective.

 

Later that evening, Jane attended a young single adult fireside

where Elder Gong spoke.

She told me how she got teary-eyed at the beginning of the conference

when in silence and reverence Elder Gong walked around

and up and down the chapel, looking at all the kids, shaking hands, 

patting arms and hands.

We both agreed this is what it must have been like when the Savior

ministered to people in the scriptures.

One by one.

Heavy and Grateful

A few days ago after Lottie got home from school we sat on the couch

in the living room and read books together. 
Sometimes I read to her, and sometimes she reads to me.
(I love when she reads to me!)
I can hardly wait for her to get home so we can read
together-- especially since I pulled out the Halloween and fall books!

Tonight after I put Lottie in her bed and covered her up,

 she told me that she had a story to tell me.

So I turned off her light, and sat down on a 

red tiny wooden chair next to her bed and listened.

She told me about 'lion island' and two little birds who lived there.  

From her description of this island, it sounds like it's a really colorful place.

In her dark bedroom surrounded by the light glow of the new

 jack-o-lantern that I picked up while at Walmart earlier in the afternoon,

 I noticed her little eyes were growing heavy.

Then her words became spaced out until there 

was silence except for but her soft relaxed breathing.

I smooched her cheeks, tucked her in tight, then walked down the

stairs into the dark kitchen.

I walked into the laundry room where 

I loaded a pile of whites from the washer to the dryer,

then I unloaded the dishwasher and 

then thought about my brother Topher who is one of the most

amazing men that I will ever know.

I can't think about him without getting a giant lump in my throat,

and I think about him ALL THE TIME.

I went from the kitchen to my bedroom and straight into my
 bed where I cried myself to sleep next to Christian.

My heart feels heavy and grateful all at the same time.

I wish I could be at Christopher's Xanadu play next weekend

to support him, and the Rocky Mountain ALS Chapter.

And I think I could use a good laugh,

and this play is suuuuper funny.

I love you Topher

Spiritual Enlightenment: Just as He Did

Easter 2017

I hosted our Easter feast this year at Fox Hill,

 (2015, 2016). 

It was just as beautiful as all the previous years.

To be honest, last year was actually a tough Easter.  

The day before Easter, I learned about my brother Topher's ALS diagnosis.

It was complex information to take in.  

It was, however, quite appropriate to find out about this devastating 

news on Easter Sunday since Easter is about Christ's Resurrection,

meaning second chances-- at everything.

This also means that Topher won't actually die forever. 

His body will die, but HE won't.

And that beautiful promise is because of the Savior.

Christopher's news was hard- it was a punch to the gut, but never hopeless or doomed.  And that is one of the reasons I love Easter so much.  

This year I hosted my brother Andrew his wife Megan, their four beautiful children, 

my sister Lucy her husband Andrew, and their darling three children, 

and, of course, my parents.

Our Easter feast included the following:

-Ham (thanks, Mom and Dad), 

Megan's green salad

Lucy's fruit salad

Andrew's traditional eggs (I call them fart eggs...they kinda stink).

My girls and I made 3-cheese scalloped potatoes (making up the recipe as we went).

Double rolls

Mr. Nielson's asparagus

and Megan B's lemon bars for dessert (THANK YOU, MEGS!).

There was plenty of food and plenty of conversation.

After dinner, we moved into the living room, where we watched THIS VIDEO 

and shared our thoughts and testimony about the Resurrection and the Savior.  

It was really a perfect Easter.  

Saturday is when we celebrate "Springtime" themed traditions 

(Easter baskets, hiding eggs, games, treats...etc.), 

because I think it is important to keep Easter Sunday focused on the Savior.

Also, to note, this may have been the first year I didn't dye Easter eggs. 

 My kids were disappointed, but sometimes when life is busy, something has to give 

and this time, it was dying eggs. 

In those cases, I just smile and tell my kids 

"Welp, there is always next year!  Isn't that great news?"

(But I did manage to find amazing edible grass to 

fill the Little Nies baskets with).

I'm the best.