Mere Intention

be vulnerable

Category: Dying

New Marks and Starstuff

As my dad’s quality of life deteriorated, I felt mine becoming more real, like all of the receptors were turned on full-blast to feel everything and anything. Like a high frequency squeal through my body. It has powered me for over a year now; charged me to make hard, big decisions and be confident in them and not look back.

Year one was challenging in a ‘how do I function now that the crazy life of glioblastoma has run its course?’ kind of way. At the one year mark, I said to a friend that I just felt (feel) sad. A whole new experience of sadness. Deeper and stronger than any I’ve ever felt. This sadness literally hurts inside my body. Its like the shock is wearing off and I just have sadness ringing in my ears (chest).

Since Dad died, I’ve been wanting to get a tattoo to commemorate his life, our relationship, the hard road of his illness. Initially, I was going to put his signature on my forearm. After about half a year, that idea was gone. If I would have done it when I felt it, it would have been perfect, but it went away, no biggie.

I’ve spent time here and there looking at tattoo design ideas, and a couple of weeks ago I came across a starburst. I’m not sure where my dad’s spirit is. We had many conversations about what he was looking forward to after his physical life ended, but I’m just not sure. But stars…that’s something I can get behind.

Carl Sagan said in his book Cosmos, “The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of starstuff.”

We are made of starstuff. An urn sits in my living room next to a photo of Dad with my kids about three weeks before he died. Ashes. Dust. Starstuff.

I set to work designing a starburst that made sense; paper, pencil, ruler. I liked a particular completed sketch and happened to count the marks I’d made. Fifty-six. Fifty -six years my dad lived before brain cancer, sixteen more months (and two birthdays) made him 58 when he died. Fifty-fucking-eight. I added two more marks to the design. It clicked. This was it.

Yesterday, I went and had the design permanently placed on my body. I now have a visible mark for the deep loss and sadness that will always walk with me. The pain and anxiety that stirred at my core as I sat down in the studio chair made me cry. I just cried. My fourth tattoo, the most painful.

starstuff

5.10.17 – starstuff memorial tattoo, right forearm

Just Fine

Today I met with a trusted advisor and shared my story of my dad’s illness and death. My intention of this meeting was to gain insight into my grieving process: have I missed a step, am I crazy, am I doing this correctly?

While I know that grief is a singular process, and I know it’s something I’m not running from, I just needed some semi-professional reassurance that my process is falling within the boundaries of normal.

Here’s the deal: It’s been almost 7 months since Dad died from a terrible, ruthless cancer. We don’t know how many tumors were in his brain when he passed, with their nasty tentacles. November 14th will be two years since the diagnosis – The Call – and I’m pretty sure I began my mourning and grieving process that day, that hour, that second, that breath.

I shared many great days with my Dad in the 16.5 months after The Call. I visited him, he visited me. We ran errands together that eventually required motorized carts at Lowe’s and then forgetting why we were there. The use of a cane to walk 256 feet to the edge of Bear Lake in Rocky Mountain National Park – then he posed for photos with my husband and son flexing their muscles like strong men beside the lake. He shared very specific, mystical experiences with me (“They’re waiting for me.”). We watched television and birds and I tried to communicate it was only 4am, so no, we were not going to be able to get donuts and get a haircut yet….choosing to not remind him that he hadn’t been able to walk or leave his bed for months. I emptied his pee bag. I wiped his tears. I prepared food. I was present.

I feel like each and every moment with my dad from his diagnosis was one of mourning, and yet, each moment was more valuable than the one before. Shiny-er and more vibrant, until finally, it was all over.

No more Sunday phone calls, no seeing my kids play sports or helping my husband with a house project. No more giggles and pure joy when we arrive at his house, or he at ours. No more inviting friends over at his request so he could see them while he was in town. No more Fat Tire, Silver Grill, fire pit…rituals – gone. Gone. They’re just all gone.

And here’s where I feel fine.

I feel like my dad lived an amazing life. He impacted so many people. At his funeral a resounding theme was, “I thought I was his best friend.” That is no small feat – to make everyone around you feel like they are the most important person in your eyes. He pulled it off flawlessly – and meant it.

I feel rested, and complete, and hopeful. I feel sad sometimes, but mostly I feel good. Strong. I also feel like I have been given glimpses into the mystical and unknown, through things Dad shared with me, but also by choosing to sit in the midst of the pain and the deterioration and the transition from body and the newly specific loneliness.

Something I said out loud today to my trusted advisor was that my dad always chose me. Always. He breathed life into me and encouraged and truly supported and respected me as a person. He loved me unconditionally. I know that the love he had for me is exactly what I feel about my own kids – and my intention is to be present for them, to show up, and hope that one day they say, “My mom always chose me.”

About fourteen years ago (pre-kids by a few years) I recognized that when my kids started middle school, that would be the time that I was home. Home to send them off and home to greet them. Being present. Being ready to listen, to engage when they wanted to, to just share space with them. This fall my son started middle school. I think the stars have been working to align over the last few years. Aligning to point toward the forgotten desires of my heart, with an unexpected, and frankly, unfathomable trajectory to get there.

I would take my dad back in a heartbeat and my enormously stressful job, too, but that’s not where we are. We are here. Right now. In this moment and this situation.

I’m feeling just fine. I’m smiling. I’m growing. I’m sad, but I am strong. And I am present.

Where to start?

This week marks six months since the end.

Sunday morning at 6:34a central time will be six months since I sat next to Dad as he took his very last inhale. His last long, slow, inaudible exhale. Twenty-two…27…30, 31, 32…35…37, 38, 39, 40…

Since counting the seconds, I quit my job, have absorbed a barrage of emotions and words from a few family members about how I should be/should have been acting/processing/grieving, traveled to Mexico with my husband, extended myself into vulnerable situations for the hopeful long term benefit of my children, try to show up everyday to what I need to do and try to also do some things I want to do, have been practicing yoga multiple times a week and meditated a few times, and just now am trying to write. There’s so much to process. To grieve.

A small urn of Dad’s ashes is now at my house. It was weird when I opened the vessel so we could look at the contents, and then some spilled out on the desk. We all giggled, and my son casually said, “Hi, Grandpa.”

The last phone call with one of my clients was divine –  in the midst of discussing life and choices and death, she said, “Heather, mourning is a singular process.” These words were exactly what I needed in that moment, and I have gone back to them numerous times in the last few months. No one’s opinion of my process is important. No one’s input is needed or sought.

In the almost three months since leaving my job, I have worked hard to find space to think and process and be fully present with my family, which has been harder and more fruitful than I expected. It has taken most of these weeks to stop thinking that I was supposed to be doing something else in the midst of my newly flexible days, that I’d dropped a ball or forgotten something.

It is hard to slow down, to sit still. My intention is to just stop. Be. Get to a place where I can feel again – feel anything.

I told a friend today that I think I’m getting close to feeling things again – I am sensing light, so I know I’m facing an optimal direction, and I will keep taking one step at a time toward the light until I have walked through it.

 

 

 

Protected: First family reality

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Day Two

This morning we went to church. Where my dad played drums in the praise band until he couldn’t. With the people who have loved on my family through this whole ordeal. With people that my dad has directly impacted. 

Then a visit to the funeral home to finalize casket and cremation and viewing and cost details. 

I went shopping for a bit. Alone for the first time. 

When I got back, I offered to fill out the last of the paperwork for the funeral home. Information for my dads death certificate.  

 
And now I’m trying to find a song for the short video of photos that will be played during the service. It’s been years since I’ve been around church music. I’ve listened to dozens…then I played one and lost it. Sobbing. I could remember Dad playing drums for it at church. 

I’ll offer that one.  

 
You see him there in the background watching me? That’s my dad. Always attentive to me. Always engaged.

Nightfall

Bedside. Moments together. Rattling and tears. 

A song I only know from dad playing drums at church – 10,000 reasons – comes on. I like it. CJ says it’s going to be sung at the funeral. We all cuddle in, lay arms and hands and cheeks and let the tears come. 

This song was played at church their first Sunday back after his surgery. She said it really spoke to them both. 

:

Bless the Lord oh my soul

Oh my soul

Worship His Holy name

Sing like never before

Oh my soul

I’ll worship Your Holy name

The sun comes up

It’s a new day dawning

It’s time to sing Your song again

Whatever may pass

And whatever lies before me

Let me be singing

When the evening comes

Bless the Lord oh my soul

Oh my soul

Worship His Holy name

Sing like never before

Oh my soul

I’ll worship Your Holy name

You’re rich in love

And You’re slow to anger

Your name is great

And Your heart is kind

For all Your goodness

I will keep on singing

Ten thousand reasons

For my heart to find

Bless the Lord oh my soul

Oh my soul

Worship His Holy name

Sing like never before

Oh my soul

I’ll worship Your Holy name

Bless You Lord

And on that day

When my strength is failing

The end draws near

And my time has come

Still my soul will

Sing Your praise unending

Ten thousand years

And then forevermore

Forevermore

Bless the Lord oh my soul

Oh my soul

Worship His Holy name

Sing like never before

Oh my soul

I’ll worship Your Holy name

Bless the Lord oh my soul

Oh my soul

Worship His Holy name

Sing like never before

Oh my soul

I’ll worship Your Holy name

I’ll worship Your Holy name

Jesus I will worship Your Holy name

Sing like never before

Oh my soul

I’ll worship your holy name

— Matt Redman – 10,000 Reasons (Bless The Lord) Lyrics | MetroLyrics 

Truthspeaker

When to get here was the hardest decision. Months ago a hospice nurse told me that when they say he’s in transition it’s time to get here. No one was saying it. All of the signs of the week pointed to it. 

Having a friend in your life who is a truth speaker is divine and invaluable. Someone to call you on your personal bullshit. Someone to say out loud what you can’t. To make things real instead of not being sure of what to do with what is turning in your mind. Someone to give you permission to fuck up, but to challenge you to choose something better, to push you to find your best answer, not just a rationalized response. Someone who will listen.  No judgement. Nothing but real. Brutal. 

I’m grateful. I’m blessed. 

Transition 

  

~Death Be Not Proud, A Memoir : John Gunther : 1949

Goodbye March

Two weeks since I was here to the day. Bought a plane ticket at 11a; fight at 820p bumped to 10p; arrived in Oklahoma at 1220a. 

The first walk in and the last walk out of this house is the hardest thing. I have to take a deep breath and just go into Dad’s space. 

Tonight he responded when I said hello. No words but a change of breath and maybe a groan. He moved his left hand up onto his chest. His hand looks different. He gave a single nod in response to a question CJ asked. His minimal urine output of the last twenty four hours is a dark fluorescent orange. He’s on oxygen via a nasal cannula. His feet are still swollen but not as hot as they’ve been the last few weeks. His hands aren’t warm. His earlobes are kind of protruding straight out due to the swelling of his face and neck. 
He hasn’t eaten since Sunday. He’s barely had anything to drink. Today was a full no-intake day. 

Tuesday morning was the last time he took meds…except for an anti-seizure one that now gets absorbed via his bum. No steroids since Tuesday morning for the brain with a tumor growing in it. No more steroids cold turkey. 

There’s only so much a brain can swell in a skull before it ceases to function.