When Sadness Comes....

My sister sent this to me.
It's perfectly perfect.

This is what Kyle was trying to say in his post
a while back, the one about feeling the feelings.

The one about embracing the pain and letting it 
help us instead of pretending it doesn't exist.

This says it so well....

I will gladly hold the sadness (not FOREVER, but for 
a while) and I will embrace it--the only way
to the other side is through all of this.

I miss him so much.  So very very much.
My heart aches with sadness and I'm glad it does
for it reminds me of the love we shared.

Thank you for so many many many many countless 
acts of kindness done for, and to, and with, and on behalf
of my family.  

From the bottom of our broken hearts,
We Thank You All.

-------------------------------

When sadness comes, hold it lightly.

We desperately want to change it, fix it, make it stop. “Go Away,” we scream, 

“there’s no place for you here!”

We ask, “Why?” We wonder what’s the matter with us. We judge. We gripe. 

We wring our hands looking for the answer, the key to never feeling this way again.

We think we have no right to sadness and frantically remake our gratitude lists hoping 

they will sear the sadness right out of us.

Our plan of attack is to numb, duck and hide with food, friends, lovers, running, wine,

 more self-care, mothering, fixing, doing, working, should do‘s and have to‘s. 

All weapons drawn to freeze the sadness out. Ramparts erected around our hearts to 

protect against invasion.

And still, sadness finds us. It pulls up a seat and makes a home in the center of our being.

To figure it out, to make it disappear, feels impossible and imperative. 

Instead, we must hold it gently.

No fixing, no denying, no “I shouldn’t be feeling this way because I have so much.”

Life is not linear or binary. 

You’re allowed to have a sparkling good life and still feel sad.

Sadness is not a reflection of who you ARE. It’s simply an expression of your current experience.

Hold sadness lightly, then question, “What’s for lunch?” Hold it softly and plan a dinner.

Watch it walk across your chest then ask a friend, “What can I do to help you today?”

Sit in the sadness and go for a walk, talk it out, cry till your eyes turn red, read a book, pull your hair, dance, draw a warm bath.

Let yourself feel it all and watch it wash up, over and through you.

 If given room to move, it will not lodge itself in you.

Sadness is not a permanent state, yet when judged and ignored, that’s exactly what it becomes. 

We are multi-emotional beings. To try and only be happy is to deny our essence.

Sadness comes and it goes on its own accord. Our only job is to let it. 

When sadness arrives, let it have a place by the hearth in your heart and ask it how long 

it’s looking to stay.

Hold it lightly. Speak to it tenderly. Hold it with incredible love. 

Hold it with the door open to let it come and go as it will, knowing that your life is 

still moving forward.

Hold it, without the need to change it, and then watch as it does.

The Final Meeting for Team Kyle

Just a little update for those that are the planning type. Kyle's last meeting for Team Kyle, his memorial service, will be held this coming Weds. Dec, 31 at the The Garden Place Building at Heritage Park, 2601 E. Sunnyside Ave, SLC, UT at 10 A.M.

His obituary will run in the local papers (the Deseret News and the Salt Lake Trib) on

Sunday Dec. 28.

The services will be a little different, but it will be ALL Kyle. We will be graced to have the lovely Sarah Sample and some of the Lower Lights sings for him (and us) and a service honoring Kyle. Mark your calendars and come celebrate the life of this great man. Thanks for all the kind words, I'm sure I haven't read half of them.

Much Love, Dor and kids

**PS!!! Kyle wanted people to dress how they felt comfortable. If you have a favorite Superman tee you want to wear to honor him (or superman socks or whatever) come in that! If you want to wear a suit or skirt with you superman attire, come in that. He did ask that you at LEAST wear some brightly colored tie, or bright shirt or something colorful, instead of all black to honor him***********

(Now what else have i forgotten?)

The Longest Night

And then the universe rent, ripping apart
at the seams, and with it ours.

And when his soul slipped through the crack it made, 
it stole pieces of us to take with him.

And it pulled us to the other side with him, 
leaving a giant hole in our hearts.

We, the people who loved him most.



In most loving memory of our beloved Superman, 
Kyle Nielson,
who passed away on  Wednesday December 24, 2014
at 3:35 PM.

Our hearts are full because we loved you.
You will be so so missed by so very many.

Update

It's 3:30 am on Monday December 22. Its 3 days before Christmas and I'm sitting in the hospital on a hard chair next to Kyle listening to him snore. When normally I would tell him to "shush", this morning the sounds of him snoring are comfort to my ears.

I have been silent on an update for a few days since so much was happening and we were digesting it all moment by moment.

On Friday Kyle was admitted to the ER with a whole series of new complications --- his list of possible things waiting to snatch him from us has grown considerably. And yet, here he is, still snoring by me. 

The long snd short of it is that he's been admitted to die -- it doesn't get any easier to say so I'll just say it. They stopped any treatments other than pain meds and fluids and I am pretty sure all bets were that he would be gone by now if you asked the drs. 

These past few days have been sacred and beautiful in a way i cannot describe (and tender and heart wrenching) but mostly beautiful -- however impossible that seems. 

So if we miss a text or don't return a call, you know why . We are holding him and each other closely as family and ask that this time be respected for us. 

Thanks to so many for loving and caring and carrying us. 

We shall see now what today brings us.... Only the morning will tell. 

Much love - all of our family

Apologies

This is Kyle.

Apparently my blog (and yes it was MY blog
that my wife "wrote" for me, with MY feelings
from 6 months ago when a friend died) the one from
Sunday called "The Thing Is...." really offended 
people.

I apparently I offended people
near and far with what I wrote.

Apparently people interpreted that we 
were ungrateful with ALL the good and kind
things that had been done for us during the 
past 21 months.

We are EXTREMELY grateful.

I was only trying to talk about 
feeling the pain.

And honoring that part of this journey for us.

So I (Kyle) and me (Dorien as well)
are EXTREMELY sorry for the offense this
blog post caused.

We all need to remember that we all
grieve differently and what comforts 
one of us may not comfort the other.

And we all need to respect that.

So my (our) sincerest apologies for 
any offense we have caused and all the
heartache and pain.

I truly love ALL of you and all of the kind
things that have been done, and appreciate
that endlessly.

We try our best to be grateful but it's hard
to always "THANK" enough--Sometimes its hard
to thank so many people for so many things
without missing someone.  Sometimes
we don't even know WHO to thank for the good
things that have been done.  So to NOT be
grateful???  

That is NOT our intent at all.  

And so if we've missed
you (and thus offended you) just know we're
also trying our best.

Love and Respect,
Kyle (and Dorien)

The business of dying....

We spent all morning with Kyle up at the Huntsman.

His numbers were pitiful really.

He is severely dehydrated.

They loaded him up with fluid and anti-nausea to
help him be more comfortable and then sent
him home on hospice.

I don't have anything really good to say about
this but just wanted to get the word out
as quickly and easily as I could.

So here it is.

No, we don't know how long Kyle has--it's 
anyone's guess honestly. 

He could have a few days and go fast or he could
battle it out a few more weeks.  If we could 
be in business of predicting, we would be very
rich folk indeed.

Instead, we are in the business of dying, and 
it will come when it comes at whatever pace it
decides to take him.

*($&($@!())@@!** (<<That says F cancer)

Thanks for all the love and support.

And that's what I've got for today.

Reality, Juxtiposed

Kyle has lost 20 pounds in one week.

10 from Monday to Friday and 10 more from 
Friday to today.

I don't even want to tell you how many
pounds he is down in the past two months.

It's shocking and horrifying what cancer
can do to a body when it comes ravaging
through at the end of its stay.

We have DNR's hanging on our fridge next to
Christmas cards.

We're shopping for Christmas presents and
trying to pick songs for a funeral.

He vomits up everything he eats and people
keep bringing food into our house to nourish
our bodies.

Everyone around us is hustling and bustling
for the holidays, and he is getting slower
and weaker.

I'm thinking about wrapping gifts and
going to the hospital all in the same moment.

It seems absurdly silly that this his happening
now and I can't but shake my head at the 
impossibility, and reality, of it all.

It's such an interesting juxtiposition of
two contrasting seasons of life.

Being lived at the exact same time.

The world is celebrating lightness of
this Christmas season and our hearts are 
anguishing over another light being muted.

I crumple in my bed in tears and watch him
and watch him and watch him.....

And I see him shrinking away before me
everyday.

Literally.

We all tip toe around each other, pretending 
the lit up trees and Christmas lights are 
lifting our spirits...

But they're just lights, twinkling in a part
of some far off universe we no longer feel
like we belong to.

Everything is dimmer here.
The lights, the sounds, the beating of the human
heart.

We're gathering in and tightening our circle.

And life, as other people know it, goes on.

And our life has slowed to the tick of the clock
as it passes hour by hour.

We exhale and inhale and keep quiet watch.

Waiting for reality, while living in reality.

Both juxtiposed, one upon the other, in a beautiful,
harsh, hideous, heartbreaking, breathtaking,
unbelievable truth.

This is what I wish I didn't have, 
for today.

The Thing Is....

Here's the thing.

This is a post that has been on Kyle's mind 
for a long time.

Since the passing of one of our Cholangio friends
this past year, in fact.

He started a post once that was raw and angry
and we never hit publish.

It didn't feel right, yet.

I have written and re-written a similar post
without finding the right words over and over 
and hit then erase.

Every single time.

Erase.

Erase.

Erase.

Today I was reading some quotes from a favorite book,
The Fault in our Stars, which happens to be a beautifully
tragic book about dying from cancer.

As luck would have it, it strikes a chord with
our hearts right now.

(Imagine that?)

The quote that set my brain to thinking once again
about this subject matter was as follows...

"That's the thing about pain.  It demands to be felt."

To.be.felt.

Felt.

And that feeling stuff?
It's some messy, awful, hard stuff.

What Kyle wrote about so many months ago, and 
what I have wrestled with so often in my tortured heart
is simply that.

Feeling pain.

Feeling the pain.

Feeling.

So often in death, that is accompanied by pain--
a raw, deep, cutting, leave you breathless kind of pain--
we try and diminish the pain.

To make it not real.

In order to NOT feel.

But this pain? It demands to be felt.

There is no way around it.

There are no magical words, or religious phrases,
or trite cliches that truly take that pain away.

It is still there, inside of us, NEEDING to felt.

We cannot go over, or under, or around the pain.

The ONLY way to the other side is 
THROUGH it.

Through the pain.

By saying things like "well, they are in a better place
now"  or "at least they are out of pain" or
"Jesus just needed another angel" or, or, or....

In so doing, in saying these things,
we are denying the very existence of what cannot be
negated or nullified or voided.

Nor should it be.

Kyle has felt an anguished, painful, resentment when 
someone has passed away and the only responses people
give are something that tries to diminish the pain
he has felt in his heart.

(He's actually a big fan of the custom they have in 
Judaism of the rending of ones clothes when they
hear the news of the passing of a loved one.
What a beautiful thing to physically rip away a part
of yourself, metaphorically speaking via the clothing,
in anguish and grief.  Because lets be honest,
that's what it feels like.  Like a piece of your heart
has been ripped from your soul and body and life.) 

Here's the thing.

We know people are trying their best to offer condolences,
and comfort and love--but in trying to take away something
that must be traveled through, there is a great
disservice being done when we immediately offer
empty promises and cliche phrases.

I believe that everyone out there has every right
to feel whatever it is they feel in this process.

There are no two ways about it, we all do this differently.

Kyle just wanted to share how HE feels, how I feel.

"That's the thing about pain.  It demands to be felt."

I have no peace in the thought of my husband dying.
I guess that may surprise some people.

(But probably not if you've been reading all along)

I don't want my ears to be filled with cliches
about how much better off Kyle will be when he's gone.

Kyle knows that I will probably want to punch people 
when they tell me and my children all the things
that well meaning people will tell me and my children.

The thing is, we want him here.

Selfishly and fiercely and stubbornly and 
with our entire bodies and hearts and souls, 
we want him here.

Not one single thing (not ONE SINGLE THING) you
say will make it any better that he's leaving his 
4 kids and me.

Not one thing.

We will all still have to travel through the pain
and heartache that is calling our names.

Slowly working our way to the other side of it.

I am certain that though the task will be long
and arduous, with many many many bumps along the way,
we WILL come through the pain to honor Kyle.

So I guess what we're doing here is giving you 
all fair warning.

Do not try and diminish our hearts.

Do not try and diminish our memory of Kyle.

Do not demand that we not feel.

We honor him with our pain.

(The greater the love, the greater the loss. Right?)

And when the time comes, the loss will be profound.

And we plan to feel it.

And that's the message. 
The message Kyle wanted to share so many many months ago.

The message of pain and love and loss.

That's the thing.

That's what we've got for today.

Tears: Take Two

Yesterday as we sat in Room 7, in clinic 1A of 
the Huntsman Institute and were told the news,
I watched as Kyle's eyes filled with tears
when he heard, again, how his body was really doing.

Now one thing you have to realize, is that at
the Huntsman they like to cover all their bases.

So in the room (besides Kyle, myself, his mother
and his sister) were several other people.

Those people included Dr. Sharma, his PA Joan, 
Angelique our social worker, the pharmacist to
review Kyle's meds and see what to add or take off,
and Mallory the RN who makes lists and appointments
and calls.

One little exam room is always pretty full.  
Sometimes it is a bit overwhelming.

But yesterday I watched Kyle's face and saw his eyes
fill with tears and Angelique told me to grab
him some tissues.

And I knew he wasn't crying about what we already 
had been told, I knew his heart was tender about 
something else as he looked around the room filled
with people.

-----------------------

Last week Dave, Kyle's best friend was here, and he leaned
over and kissed Kyle on the forehead before he left with
his typical "Love ya buddy."

I walked Dave out and he commented on Kyle's emotions,
assuming sadness at what was transpiring. 

-----------------------

I tried to explain that the tears are not out of 
sadness, although he is sad, but more out of tenderness.

A tender heart that has been stripped away of 
everything else that doesn't matter anymore.

A heart that only sees and feels the love and goodness
from those around him who are trying to help make
his journey, from here to there, a more peaceful thing.

Kyle isn't crying because he is sad--he is crying 
because he feels what all the rest of us forget about 
most of the time.

He is crying because he knows the secret about what
is really most important in this life.

He's lived it for 21 months.  He has been the recipient 
for 21 months.  His heart is full, of love.
--------------------------

There are no magic answers about what will happen in
the days and weeks ahead, and to be quite honest, there
are no magical answers about what comes next for Kyle.

But what we do know, and what Kyle knows better than
anyone, is that love is the most magical healing
soulful real thing in this world.

It's a lesson that we hope to not soon forget, for
if we do?  This has all been in vain.

----------------------------

And so yesterday when Kyle's tears were falling in Room
7 of Clinic 1A--it was not out of sadness--but out
of gratitude for doctors and nurses and MA's and phlebs 
and pharmacists and ladies who check him in every week
at the front desk and social workers and lab workers
and a whole slew of people who have been fighting for him
to live for 21 months.

People who also had real tears in their eyes because
they loved a man named Kyle and wanted so very desperately
for his journey NOT to nearing it's end.

People with degrees longer than my arm, who have diligently
searched for any and every way to "save" this 46 year
old man to give him just a little bit more time with
those he loves.

Because they love and care in spite of overwhelming
odds against survival.

And so if you see Kyle and he has tears in his eyes
(which is most likely)--just know that it is because
he knows the real meaning of the one word, the word
that matters more than anything else...

The word LOVE.

And that's what I've got for today.

Numb

Last night our new reality hit me very hard.

I just sat and cried and cried.

Josh told me it was okay (what else could he say? 
except that perhaps I am a crazy lunatic....which is 
ALSO the honest truth)

Grace sat and held me for I don't know how long.
And let tears pour down my face and sobs release
from my body and anguish spill from my heart.

We have had a steady stream of visitors, people who 
love Kyle and want to say "good-bye".

It's been a long, hard, good, uplifting, terrible,
frightening, rewarding, positive, awful week.

Yes, it has been all of those things.

And more.

We are so utterly and completely overwhelmed at ALL
the acts of kindness being done for our family.

This is your "THANK YOU" ...you have been warned that it
is entirely impossible to write a personal thank you to
everyone, even though I would love to, I don't have the
time or energy to do so.

I hope you will forgive me.

My mother always taught writing "Thank You's" was a must.
And it pains me not to do so.

-----------------------

Today Dr Sharma was back in the office after 3 weeks
in India and a week of personal illness.

He confirmed the ugly truth we heard last week 
and said Kyle had "4-6 weeks left."

His liver and kidneys and body have had enough.

Damn this cancer to hell for stealing my 46 year old
husband and the father of our 4 children.  

Of course, Kyle could take a hideous turn for the worse
and die Friday (which we pray isn't the case)
OR he could last a bit longer than "4-6 weeks".

There are obviously no "exacts" with this whole dying 
business.  But this is where we are headed, no ifs,
ands or buts about it now.

Kyle had a lot of tears in the office today and he made
up for the ones I had last night.

My heart feels like it is literally splitting open--
and so more often then not I slam it shut and become numb.

It is entirely too painful to feel, all of this, all
of the time.

----------------------------

I believe if we had one wish, one prayer, one thing
we would sell our souls for, it would be that Kyle
makes it past Christmas, so that we don't have the pain
and anguish of reliving his death every year at Christmas.

I cannot imagine a worse fate, although I do believe we
have very little choice in the matter...and so what 
will be, will be.

------------------------------

We thank you all again for such an outpouring of kindness
to our family.  

Love, it truly is what makes the world go 'round.

That's what we've got people, that's what we've
got for today.

Some words from Kyle, for those of you not on Facebook....

My wife is so much more eloquent in sharing my feelings. 

That said, I feel like sometimes you all should just hear from the cancer 

guy's mouth. This whole journey is one long story of so much love and

service and kindness, but sadly when things like weeks and months come into the

prognosis, it hits us all a little harder. The kindness, the service, the thousands 

of sweet notes sent my way have truly filled my heart with love. It gives me 

peace and strength to keep fighting forward. People ask if I am scared of death, 

and I am not in any way, as far as death, no fear or anxiety. Lots of sadness 

and worry about family and the people that are left in the wake of my death.

I don't like being the guy that causes pain. I believe much of that lack of fear 

and anxiety is from each of you out there has done all your can to lift me and 

love me and my family. I really can't explain how much strength and peace it 

gives me. My one pleading wish is that, that same love and kindness for me 

carries on with my wife and family, their burden is far more than dying of cancer 

and they will need you all far more than me. I love you all, thankful for the 

many awesome people in my life. I hope to have months and time to see 

as many of you as possible. Dorien has shared and I concur that visits are

lovely, but they are truly emotionally taxing so I may not be good for a 

long visit. 

Please forgive me when I tell you I just gotta rest.

I love you all.

Kyle

A Photo from better days.....

Here's the scoop, for now.

First we have to say THANK YOU again for the love that
has come our way since the devastating news (that we always
knew was coming--but still....).

We cannot begin to express enough thanks ever to everyone
who has loved us in big and little ways. 

Seriously floored and grateful beyond words.

I loved watching Mark in his maid outfit steam clean our
bathrooms...

and Uncle Dave bend over and give Kyle a kiss on the 
forehead.

and Amy listen to me swear and gnash my teeth.

and for treats that have shown up on our doorstep.

and for people hugging and loving my children.

and for dinners that have been brought in.

and for podiatrists that have made house calls.

and for so so so so so many acts of love and kindness.

and for social workers that let me text anytime
and cry into the phone.

and for everyone who is anyone at the Huntsman Institute
who has touched our lives.

and for people who say F cancer for us and with us.

I am so so grateful for a boss who went above and 
beyond to make sure I could be home with my husband now.

I am so so grateful for co-workers in the "business
closet" that have truly been my friend and cared
about me and my life and my husband.

-----------------------------------


We are crushed and our hearts are filled with a sadness
so deep and heavy that it consumes us at all the worst
moments.

My kids are the hardest to watch.
Digesting this is a blow, a punch in the stomach.

I have a feeling that will be the case for a long time
to come.  

-------------------------------------

Some good news is that I had a boss that worked and 
worked until she could find a way to let me have 
time off with my husband (since I did NOT qualify for
FMLA until December 23)

Long story short is that *I* can take a leave of absence 
for *MYSELF* and be home to take care of Kyle.

That starts on Monday after I finish up some lists
and things to do at work.

---------------------------------------


We know that there are many people who want to visit,
and as I said on Facebook, without being rude, there
need to be parameters for Kyle at this point in time.

Kyle is tired and visiting makes him even more
tired.  It is emotionally and physically taxing on him.

That is the honest truth.

Wise words from people who have been through this before
are as follows:

**Please keep visits short (1/2 hour or less) 
That's what he has in him for now.

**Please call or text ahead of time and make sure
he's up for it.  (If you need a cell number message
one of us on Facebook)  This varies from day to 
day and hour to hour honestly.

**He is home during the day and also available then.
Again text beforehand to see how he is and if
he's up to it.

**Nighttime is when his pain seems to come on strong
and visits after about 8 PM are too late (I know 
we are worse than 90 year old people).

**He would love a text or email as well if there's 
something you want to share with him, or want him 
to know, or want to say.

**This is also a sacred time for OUR family.  
Please be respectful of that time.  (No one has
been disrespectful so far in case anyone is worried!)

Thanks again for an outpouring of love and acts of 
kindness.  I don't even know who to thank for half
of them.

This is our update for today.

Tears

There is no way to make this news any better.

We spent the day at the Huntsman ER and in one week
Kyle's numbers have gone from "okay" to "terrible."

But this is what I've been saying all along with this
cancer----on the turn of a dime it can be bad, done, over.

His liver isn't working and so his kidneys aren't working.

In short, his kidneys are failing.

No.  There isn't anything they can do but try and keep
him comfortable.

The doctor today said "a few weeks to a month or so...."

So it's pretty much day to day now.

Does it seriously have to be during the Holidays?

It does I guess.

That's the short story.

There are a lot of tears here at our house today....

And it's what I've got for today.

Oh ya, 

That and F Cancer!