Sunday, May 18, 2014

My healing place

When I need to heal, process, talk to God, write or just
This is where I go.  Hiking until I can find just the perfect spot to converse with God, I can escape the world just long enough to fill that emptiness my heart feels, and satisfy that craving my soul requires.
I used to go away and rent a cabin for a night, just to escape while living in Phoenix.  Or hike down into Oak Creek Canyon with all my textbooks to study while in graduate school in Flagstaff.
Nature, and more specifically, mountains are where my soul resides...
The cool crisp air, the bright warm sun, the pine smell, the rushing streams and waterfall beckon me to them.  It is where I do my best writing, it is where I feel closer to my creator.

In counseling we had agreed that Lee would give me 2 hours a week to use how ever I like.  Away from home, so as not to be distracted by motherly duties or housework.  Instead, I would deliberately escape for awhile and write or just be.  Something that would help me process through my grief.
This was the first week it actually worked out. 
The weather is improving and beautiful and the mountains called for me to trek their passes.
Today I was overwhelmed by God's beauty.  It is then that a song came on my Ipod, that I had never heard.   It is called "Stranger Here" by Tenth Avenue North.  It tells that we are only strangers on this earth, and soon we will touch God's face and all sorrow will cease.
Today I was overwhelmed at the sheer beauty of God's creation and tears spilled forth from my eyes.  Not that this had never happened previously, but this time was different.  God's artistry was just exceptionally more beautiful, more colorful, more vivid to my eyes and heart today.  It had truly been my first hike since losing my sweet Daddy and he would have loved this hike, and even joined me.  I knew that if God could orchestrate the divine construction of such an unparalleled adult playground, could he not just blow our minds with the artistry that we will find when we get to heaven?  The architecture and colors, and mountains in their majesty that will exist in heaven!  And at what a magnitude they will be there, just blowing these out of the water?
This realization made me think of my Daddy.  How he is already playing in his heavenly playground.  He loved the mountains and just like me, always said his heaven would have them. 
I can't wait to run without bad knees and a bad neck and back, through the mountain passes with my Daddy in heaven!  And with Jesus too! 

I was just so simply overwhelmed with this beauty today that it overtook me and led me to a waterfall and rushing stream where I rested and just shut off my brain and my phone and just sat still.  Talking to God about my fears and needs and asking him for divine healing of my body.  But more than that, just being still, asking him to open up my eyes and ears and heart to hear Him speak to me. 
Although today I didn't hear anything, just taking the practice to be still for 30 minutes of NOTHING but rushing water and quiet was nourishing for my soul.
God has seemed so distant to me lately, despite my intense clinging to Him as my greatest source of comfort.  And yet, I know that the Bible says this happens.  There are times He wants you to cling, and he will take a step back, to ensure your faithful dependence.  I long for him to speak to me again, loudly, boldly, clearly.  Or to do something mighty and miraculous like heal my tired aching body and thyroid.  So far, nothing, but I feel I am on the brink with him.
And so I will wait some more and just today be blessed by this amazing earth he created and that I am blessed enough to live 7 minutes away from enjoying it!!!
Today I cried in overwhelming Awe of my God, this amazing artist.  I felt my dad for the first time since I lost him.  Not his actual presence per say but more the feeling that he was with me in the wind and trees, and that he would love where I was.  Almost the feeling that he was saying "Sis, you can't even BELIEVE what you're gonna get up here!  Just wait Sis!" in a playful way.

 They weren't just the painful heart wrenching tears that symbolize the unbearable pain we must go through in grief.  No, instead these tears were cleansing.  Still painful, but cleansing.  That God is good and beautiful despite all my dad went through.  That if the God of creation made this area of Utah so lovely, then what else has he done magnificently.  And how extraordinary will heaven be?  I was baffled by his Greatness today.  And that was enough.

Awwwwwwww I miss him.  I cried many tears today but I noticed something.
The cleansing tears meant I love a God who is still remembering me.  And that I am beginning, to ever so slowly, allow God's healing hand to touch me, and glue the pieces of my broken heart back together. 
Cleansing Tears of Relief

The Bond They Share

Today after dinner Macie grabbed this necklace and wanted to see Grampy.  Not an uncommon occurrence, but tonight brought a twist.
She pulled his picture to her and said "I miss you Grampy.  I lub you Grampy."
And then she kissed his face. 
I lost it.  Somehow, she gets it.  She misses him too. 
As my brain sifted through the coming memories of our lives that she would miss sharing with him, I wept.  She said "Mommy Cry."
"Yes Baby Girl.  Mommy cries.  She misses Grampy too.  Everyday."
They have a special bond.  They just always did.  I am not sure how, or why, but I believe he and God speaks to me through her. 
We prayed for him daily after he was diagnosed.  Towards the end, even when we didn't know yet that the tumor was back, she started saying "Pray Grampy.  Bye Bye Grampy."  I knew in my heart of hearts that she knew what I was denying.  That his time left with us was short.
She loved him and called him "Googa googa" after he always said "Booga Booga" to her when she would swing at his house. 
At the time of this video, he was about a week from being diagnosed.  We knew he was in pain but hoped for an ulcer or bum gallbladder.  Little did we know...
But in my heart I knew this video would become my most precious and favorite...I knew the very moment I was recording it, it would become priceless.


I cannot even begin to think of all the things she has said and knows, but here are a few that stand out.
When he was home on hospice, a dear friend brought him a big happy face balloon.  Macie and her cousins loved it.  One day recently while we were shopping at the dollar store she saw one.  She suddenly yelled out "Gampy bawoooon!  Mommy! looka!  At's Gampy bawooon!"
Of course I bought it. 
Next at the grocery store, another balloon and again she said "Ooooooh!  Gampy bawoon!"  I still wonder what the lady in the deli thought when she saw me weep.
At TGI Fridays eating when mom was here with us a couple of weeks ago,  there was a happy face above our table.  I would have never seen it, it was up so high.  But Macie did.  "Oooooh Grampy bawoon!" Reminding us that he was with us there too. 
It has become a comforting thing whenever she says "Gampy Bawooooon!" when she sees a happy face anywhere, her little stamper, a happy face top toy from Maddie and Hannah's birthday party,  a book, anywhere.  I believe God has used her little eye for those happy faces to remind me that my Daddy is OK. 
And he is HAPPY.
Many times she has also said "Gampy with Jewus.  Gampy eat ice cream!" 


She instantly adored him...
She made Grampy build something with ALL the legos. 

She wanted him to pick her up so badly.  But by the end of October when we visited he was too weak from Chemo and the tumor returning.  She settled for laying her head on his leg. 
Their indescribably special bond reminds me that he is ok.  And is most definitely eating ice cream with Jesus. 

And we will be ok too.

Saturday, May 10, 2014

Grief is a phantom-limb pain

I read a long article about an Oncologist who lost his wife to cancer.  How no matter how much you know the treatments won't work, that they will have more risk than benefit (like chemo), you automatically kick into a mode where you do whatever you have to do.  Even on hospice I wanted them to keep my Daddy's drain in, to keep doing things they don't do in hospice, to keep the chance alive that he could be cured, to keep HOPE alive.    You just proceed to action mode, what test do we need to wait on today, what is the next step we can do to make him comfortable, full well knowing eventually all interventions must cease and you must accept the inevitable.   And yet, through it all, you long for the end, for the daily stress, worry and pain to end, for the suffering of your loved one to end, but you know what the end means and that is unfathomable.  It is such a precariously unbearable tight-rope walk, without a steadying pole to carry. 
I love what this doctor said about grief.  He hit the nail on the head for me and I totally 10000% agree.

"It turns out that Hollywood has grief and loss all wrong. The waves and spikes don’t arrive predictably in time or severity. It’s not an anniversary that brings the loss to mind, or someone else’s reminiscences, nor being in a restaurant where you once were together. It’s in the grocery aisle passing the romaine lettuce and recalling how your spouse learned to make Caesar salad, with garlic-soaked croutons, because it was the only salad you’d agree to eat. Or when you glance at a rerun in an airport departure lounge and it’s one of the episodes that aired in the midst of a winter afternoon years earlier, an afternoon that you two had passed together. Or on the rise of a full moon, because your wife, from the day you met her, used to quote from The Sheltering Sky about how few you actually see in your entire life. It’s not sobbing, collapsing, moaning grief. It’s phantom-limb pain. It aches, it throbs, there’s nothing there, and yet you never want it to go away."

Friday, May 9, 2014

Grief Timeline in Photos

One of the things my counselor and I worked on together was a timeline of events from diagnosis to present.  My therapist read the timeline and my comments, feelings and events over and over and over again in several sessions.  Although repetitive, I can now see its therapeutic value.  In hearing someone else read the timeline, I quickly realized that each time I heard it, different events would evoke different emotions.  It was amazing how I would cry in one part on one repetition and it wouldn't affect me on another reading.  Desensitization had occurred at times and I have realized it was meant to move me through the most painful parts.  Well, here they are in pictures.  I'm so grateful for these photos now.  It is ever so clear how cancer wrecks a body, a body God meant to be only temporary, that houses a spirit that lives on.  No other event in my life has made that more clear to me, then watching my beloved Daddy's body deteriorate.  It is amazing to me, that reading Hospice booklets are spot on, and the nurses can pinpoint how much time is left by the obvious signs that a body is shutting down.  Signs I never ever knew until I watched it happen before my eyes.  It was textbook and somehow comforting to know that he was not the only one that this had ever happened to.  That actually, we ALL will experience the decline of our bodies, maybe not in such a violent way, but that this is how it was meant to be.
And so, the journey in photos...
August 16, 2013
The night before his Whipple Surgery to get the damn tumor.  Which they got ALL OF.  I wish the surgeon had never told us later "I almost backed out once I saw it wrapped up in one of the arteries of the colon."  All my ears needed to hear was when he said "We got it ALL."  I immediately hugged my Mom, and cried "THANK YOU JESUS!!!"  We thought we had so much more time...
Dad getting labs for chemo.  I was so blessed to go with him!  He was such a sport.  All the nurses LOVED him.  Seriously, he was the BEST PATIENT!
Those nurses adored his baby blue eyes!
Late October, 2013.
Me with him at Chemo.  I just love him.  What a trooper.  He is truly my hero.
On my birthday, December 1st, I got the worst news of my life, a second time.  The tumor was back on his pancreas in the SAME spot where it was removed and ressected before.  How could this be after TWO CLEAR NO NEW CANCER CT scans!?  This is obviously where medical technology/science failed our family by providing us so much false hope.   He was so weak after not recovering from chemo the last time. (He decided to call it quits on chemo, it was wearing him down.  He was too weak.  Little did we know the cancer was growing back which explained his pain.  We wanted to believe it was adhesions or scar tissue from surgery, but alas, the back pain and stomach pain was the tumor again.  Our oncologist told us he'd be feeling great by Christmas and we could have a good holiday all together.  But he never recovered.  That has been one of my greatest struggles, to let go of the FALSE HOPE that the medical community provided.  That maybe it would be our last Christmas, but he would be feeling great and we could have a great one.  His continuing pain was ignored for 2 months...
So we moved him to Skilled Nursing unit (or as Mom and I called it, "Unskilled Nursing")  He was sooo upset to be there.  The tumor was inoperable, he had two drains placed to drain fluid.  He didn't want to die in a nursing home.  They were HORRIBLE there.  I practically had to give him his pain meds myself.  They wanted to do extensive PT and OT to get him strong enough to go home, which sounded like a good idea in the beginning.  Until we all realized it was actually time to call Hospice, that he was in horrible pain.  I promised him secretly I'd get him home.  This was one of the worst nights of my life.  Macie and I arrived in Kansas on December 6.  He took one look at her and lost it.  He said "There was so many things I wanted to do with her."  It was the most heart wrenching thing I have ever witnessed.  He was SO VERY SAD.
I sat with him in the Nursing Unit and he still looked pretty good.  So peaceful while he slept, yet SO very depressed when awake.  That night, 30 minutes after we got home, the nurses called us and said he went unresponsive and since we had a DNR did we want to revive him?  We said yes, since Brad and Erin and Lee needed to get there!  Mom and I rushed to St. Francis Hospital and didn't know if he was dead or alive.  It was the second worse night of my life.  He was awake and alert when he got there, and said he passed out when he tried to get up to go to the bathroom and the nurses freaked out.  Further evidence they were NOT adept at caring for a terminally ill patient.  We teased him that at least he got himself out of there. :)  We met with Hospice and they moved him to a Hospital Hospice Room immediately, but not before I suffered a major anxiety attack and was admitted in the room next to him for an EKG!  I told them it was 1 am and I hadn't eaten and I was having a panic attack and give me some juice and they finally did, with a half an Ativan and I was fine.  They wanted to run all kinds of tests and I said "I thought my dad was dead.  I had a panic attack.  Let me go." 
I spent this night all night in Hospice.  My dad was so much happier there.  I can't say enough about Hospice nurses.  They are special.  My favorite one, Don, told me he worked 3 days on and had 4 off but usually picked up another shift.  When I asked him if he was trying to make extra money, he said "No.  There is more that I could be doing so I want to work more.  More people who need my help." 
They are amazing. 
I cherished this night more than any other in my life.  I literally sat there watching my Daddy breath.  I noted the date and time.  I knew that this night would be etched in my memory forever.  I took a video of his calm and quiet breath.  I never knew that someone breathing would be so therapeutic.  I needed to be with my Daddy.  This night was one of my greatest blessings of my life from my Heavenly Father.  God had warned me on my last trip home in July, before diagnosis that I should begin to prepare to lose my dad.  I didn't know how or why or when, because I was convinced he'd live to 100.  But this was another time when I could CLEARLY hear my precious God tell me to CHERISH this night.  It was one of the greatest gifts I have ever received.  To simply Be.  Still.
He breathed peace into my soul. 
Everyone arrived.  Dad's face lit up to see his babies and even more so when the Social Worker said he could go home.   He was SO amazed that a hospital bed would be waiting for him and everything would be set up. 
Getting him home was a HUGE answered prayer.  We put him in the tiny guest room so that he could see out the window and watch his girls swing.  He said "This is so great Sis.  Wow, this is great."  He was sad when the girls quit swinging, he wanted to see more.  We got 2 great days from him, with chatting and visiting guests.  The last "surge of energy" as the Hospice booklets told us would happen.  He even got his appetite back and we spoon fed him clam chowder and baked beans.
Then, things turned for the worst.  I have so many memories of just sitting by his bead and playing Gospel Cds for him.  It amazes me that every song that came on was about going home to heaven.  It made me cry but comforted him...
I spent many nights holding his hand or falling asleep with my head on his bed.  It hurt to touch him too much by then or else I would have crawled in bed with him.  I wish I would have slept on the floor, but I knew his taxed breathing would be too upsetting. 
This was a couple days before he slipped into a coma and was incoherent.  I still thought he looked pretty good by this point but now when I look at the picture, I shudder.  His body was failing and his spirit was leaving.  We did everything for him.  His drain leaked and even the visiting Hospice nurses weren't sure how to take care of it.  The drain was draining into a colostomy bag that leaked all over his clothes and bed.  We had to get Brad, Mom, Erin and Me and all  of us hold him and change him and get the area cleaned.  It was the dignity thing. Soon it got too painful for him to be moved and we couldn't change his bedding and clothes each time.  I still wear a pair of his sweatpants with a bile stain and I will never stop.  It reminds me of the hell he lived and the hero he is.
  He also wore an adult diaper and we changed them.  I had a friend ask how we did that.  I told her that when it is your parent, you take care of them.  It is innate and you just do it without another thought.   It is amazing to me how we start as babies, with diapers, eating only liquids, cannot walk, cannot control our bowels or bladder, and we return to that exact state. 
 The pain got so great that we had to call Hospice in on December 16th at 10:30 pm.  We went to giving him meds every hour.  He was groaning in pain.  It was unbearable for me to watch and I began to bed Jesus to take him so he would no longer suffer.  The nurse was my favorite, she sat and held my hand and spoke of Pennsylvania, where she and Dad were both from.  He grunted and she said he was still with us partly, listening to our conversation and acknowledging that he heard about Pennsylvania, but that he was also partly gone.  She was so comforting.  I told her about our adopted baby boy and that I was so sad my daddy wouldn't get to see him and she assured me that he would.
I spent till about 1:00 am holding his hand and finally retired on the couch.  I was due for medicine duty at 6 am  and I remember waking up about 5 and hearing nothing.  By that point his breathing was so labored and thready and it alarmed me to hear nothing, but I decided to just lay in bed because I was so tired and would be getting up soon for meds.  My mom came and woke me up at 5:30.  I jumped up, startled and said "Is he gone?" She said "No, but I think its close.  You should get Brad."  I ran downstairs and woke up Brad and Erin and by the time I got in there he was gone.  My mom said he had breathed his last two breaths, clutched her hand and his eyes locked with hers and she felt he was wholly present in the room.  I got Lee and we all went in.  I hope he saw us gathered around before Jesus took his hand.  I finally got to crawl in bed with him and laid there for a good hour.  He was gone.  What a shell of a indescribably wonderful human being was left behind.  No need for that broken down body.
The day was a fog but we made funeral arrangements. 
The funeral and burial were beautiful.  They couldn't  have been more perfect.  The Gospel was clearly presented several times and two ministers spoke and Brad and Erin and I were table to share as well, by the Strength of God.  My biggest regret is not recording the service which could have easily been done because the sermons were amazing, the music perfect and the gorgeous full military funeral was wonderful.  I hope Jesus let him watch. 
Gorgeous 21 Gun Salute.

There you have it.  Many of the pieces of my grief timeline shared via photos.  There are infinite more stories and words I could share from this time, stories, events, etc. but this will do for now.  Next I will share about the night I spent with him in Hospice at the Hospital, and what I wrote there that I shared with him at home.  And another entry will be what I shared with him at the funeral. 

Tuesday, May 6, 2014

A memory made is a memory lost...

Today was especially heart wrenching. After 2 and a half weeks we took my mommy to the airport and shared a tearful goodbye. The time flew by, as we kept busy with shopping, sight seeing, eating and just hanging out. It was such a wonderful time and I so cherished every moment. The happiness was laced with some bittersweet sadness however. In a stark realization it became clear- that with every memory made with my Mommy, a memory was lost with my Daddy. This was the first time she came to visit since we lost him nearly 5 months ago. He should have been here too. A trip was planned last summer that he never made. Many trips were planned because he loved to travel, especially to see us. He would happily go along for the ride, anywhere we took him, any place we wanted to show him. These weeks were full of moments spent imagining what he would be doing. I pictured him sitting on my deck with his morning coffee, as he so loved to do. Or tinkering around Lee's garage, looking at tools and projects. I longed for him to fix my broken drawers, as he had before and ask me if he could use his amazing engineering skills to mend something. I imagined him laughing and smiling at all of Macie's antics, and happily riding along through the mountains. I missed him when I crawled in bed beside my mama for late night talks, as I used to do with both of them. I heard things he would have said, and mentioned several times

"Dad would have loved that."
  Today was a day with many tears. The bittersweet joy of the last two weeks overtook my heart. The times we take for granted, the stolen memories of loss were overwhelming today. I cried the entire way home from the airport, my vulnerability so quickly revealed to a 2 year old.
I cried out to God today. Asking him to heal my body of its physical ailments that have been so exacerbated by the emotional war of grief. I asked him to relieve me from this road I'm walking, that seems to only become more difficult, the mountain more strenuous to climb. 
Five months is almost half a year. In some respects the time has flown with a quickness unparalleled by any other life event, yet waned so slowly, I often think I couldn't get through the day. Some days I lie in bed dreading the day, begging God to make it fast so I could just crawl back in bed, fall asleep and pretend the nightmare didn't exist. 5 months of time. Half a lifetime ahead to discern how it is that I am supposed to survive without him. I know I am blessed to have had the relationship I shared with my Daddy. The grief is so deep, so real, so raw, and so painful, that it can only indicate a real and loving and loving relationship I shared.   And for many, this type of relationship doesn't exist and never will.  They may not experience the angst that I do, so for that distinction, I am ever so grateful. 

  Yet, now is when I walk the journey with God alone. My days are so lonely. I feel so disconnected from the world that has moved on without me. I am left behind to navigate these uncharted waters. As we were warned, the daily support stops here but the pain doesn't. People continue with life, and even my dearest friends have stopped checking in. Perhaps they forget, or they are tired of hearing about my grief, or afraid they may cause me to cry. Even my husband forgets to hug me a little more or ask how I'm doing more often than I needed prior to experiencing my loss. I don't blame anyone, I cannot be angry at those who have never walked this journey of losing a parent. I cannot judge those who aren't sure what support is needed, or fear that asking the question, "How are you? I mean, REALLY?" that I so desperately crave may invoke a response they don't have time to process. 

God has placed some extraordinary people,in my life, who have walked this road before me, friends with whom I would never have expected such a bond to form. Yet now, alone, I must muddle through my days. With ceasing support, the grief worsens. One would expect the pain to lessen with the passing minutes, hours and days. But as time traipses on, at least for me, there is no lessening. Only a distinct realization that this journey may be just a little heavier for me in comparison with others.  As I have read and heard and learned, the grief journey is entirely different for one than for another. There should be no time limit, and no one can judge me for taking things a lot longer. Only now can I begin to see the lessons I am learning. This has been the time during which my faith has been most tested, and my personal growth so strong and excruciatingly painful. It is not cliché to say that one doesn't understand until they go through it themselves. Indeed empathy is a real and true emotion. It is, I believe, one of the traits God instilled in our experience, a triumph of spirit that turns to nourish another in their darkest hour. That has been my prayer all along, that my journey, and my writings may only act to strengthen and comfort another...
And now, today is over. My heart is heavy as I miss both my Mommy and my Daddy. Others have even told me that it is time to move forward, to my "new normal." Well, I am not ready for that.  Five months to others may seem more than ample to progress out of grief. But here I sit at day one all over again.  I still spend the majority of my days merely existing, reminding my brain to remind my heart that he is really gone... And tomorrow may very well be another day of two steps forward, three steps back. Or better yet, tomorrow may be the day the sun returns to my heart. 

I so love this quote from a devotional on grief that I am reading...Thanks Mom for sharing it with me and walking this journey beside me...This is SO where I am!

Over time, the grooves of this new knowledge wear themselves into our brains, but it will take a while, and we will have many relapses--desperate yearnings for our loved ones to again fill their accustomed places.

But eventually the memory of their having shared this or that particular experience will carry a poignant gratitude for all the times they were with us. And we will find the power to go it alone."