01-14-20 Advocate For Your Loved Ones

Nearly every night I have variations of the same dream. I’m back in the hospital, in Room 12 of the ICU, watching my father die and being powerless to stop it.

One of my most important roles over the past year and a half was being an advocate for my father. Once during that time I had a nurse take me aside and tell me that I needed to stop researching things on the internet and leave things to the professionals. “He’s weak and frail, honey,” she said with a syrupy southern accent, “so you need to stop it. You are just upsetting yourself.”

“I know that one day I won’t be able to advocate for him. One day he will be too weak and too frail, and there will be nothing I can do to help him. But until that day, I will do whatever I can to get him the care he needs. Now call his doctor and have her look at this!” I responded while handing over an NIH study I had tracked down online that was a verbatim explanation of my father’s condition that the doctor’s had yet to pinpoint. A half hour later his medical team was onboard with what I had discovered and within 48 hours he was home.

Having spent a lot of time around hospitals in the past year and a half I have learned a very important lesson- you have to advocate for your loved ones. If it hadn’t been for me, my mom, or my sister stepping in on multiple occasions, my father’s story would have ended much sooner.

We watched doctors make some pretty bad decisions. We educated ourselves and we intervened whenever necessary. We asked questions, we demanded answers. There were times when we barely stopped doctors and nurses from giving my dad medicine he was allergic to. We pushed for nutrition and hydration as doctors shrugged their shoulders and wrote him off. We didn’t carte blanche accept their explanations just because they had fancy degrees and high paying salaries. We knew my dad. We knew what was normal and what wasn’t. They didn’t. They saw him in a vacuum and treated him accordingly. They didn’t see him.

That may sound unfair. In fact, most of the doctors and nurses that we met were amazing and helpful and kind. But when you have a bad doctor or nurse, the result can be dangerous. We met several callous and unfeeling doctors that nearly cost him his life on multiple occasions- the ones that read the word ‘cancer’ on his chart and never bothered to read further down where it said the cancer was completely under control. Instead they took one look at him and said, “Call hospice.”

So we fought back. We stepped in and protected him, the way he had spent our whole lives protecting us. Because that’s what you do when you love someone.

Deep in my heart I had hoped he would rally. I would have gone on fighting for years to keep him at our side. But he was weary of the battle. His body had gotten too weak and too frail and in the end, I think he was ready.

The night before he passed, my sister and I sat in his room and held his hands. It was the only time during his stay in the ICU that all of his vitals looked perfect. His breathing rate was spot on. His heart rate was where it should be. His blood pressure was steady. As I watched him with his eyes closed I saw the briefest of smiles cross his face. I’m not sure what he was seeing, but I know in that moment he wasn’t afraid. He was ready for Jesus and Jesus was ready for him.

Dear friends, advocate for your loved ones. Don’t assume the doctors know everything. They aren’t looking at the big picture. They don’t know your loved one’s ‘normal.’ Fight for them while you can with everything you have and when they are ready to go, hold their hand and tell them you love them.

12-31-19 Five Years – 1,873 Posts

I started scrolling through the photos on my phone this afternoon, looking for pictures of my dad. I have a lot of them over the past one and a half years, but most of them are in the hospital. I was disappointed that I didn’t have any good ones more recent than early November, but when I alighted on my last non hospital picture of dad, it was perfect. It was a picture of him and Tim at the shop. In the photo, they are in the spray booth. My dad is holding a spray gun and giving Tim instructions about something. I think it was the last time my father held the gun. We often joked we would bury him with it.

The next day my dad went to the hospital, and so began a series of reactions to medications and what I would mark as his obvious descent, however it was only really obvious in hindsight.

It’s only been four days since my father died, and yet how can that be? Is time moving slower? I’m sure the world outside my window has not slowed down a bit. Life goes on as it always has.

They don’t know they’ve missed the passing of a truly special man.

The most unexpected symptom of my grief is the overwhelming fatigue that follows me throughout the day. Sleep is the only thing my body craves, and yet in the middle of the night, with the moon shining through the windows, I am denied even that.

I’ve been at staring the photo of my father… the one where he looks healthy and happy, and absolutely the father of my memories. I stare at it to burn it into my mind in order to supplant the image of his final moments.

Oh how I miss him.

My dad was an artist. During the last couple of decades of his life, he dedicated much of his time to his art. He easily did hundreds of paintings. Some he hated, turned over, and used the other side. Others found their way into the dumpster. But the ones he liked, he kept. And he liked a lot of them. There are piles of paintings at the shop, and many hanging on the wall. Here at home, we have several proudly displayed, and a mass of them sitting in the basement. He did commissions as well, and it makes me happy to know his art is still out there, being enjoyed by the people he loved. He made me several pieces, which are among my prized possessions.

He was a talented man.

I’m thankful my children knew him and knew him well, and I’m glad they knew him before his sickness, the time they refer to as ‘Strong GP.’ Baby E is convinced no stronger man ever walked the earth. I’ll allow him that.

I miss his quiet sense of humor and his quick wit, which turned any family meal into a playful banter. I miss the way he used to call me on my commute home from work to read me his latest poem. I miss the way he would gather the family to unveil his newest painting. I miss the way he would dig through the recycle bin to take out any containers he thought might be useful at the shop. I miss his ingenuity that could conquer any problem set before him.

I really, really miss him.

Thankfully I know where he is, and it makes the hurt bearable. I’ll never stop longing for one more hour to hold his hand or hear his voice, but our lives here on earth are but vapors, and soon we will meet again.

I love you, Dad.

Today marks the end of another journey. Five years ago I made a commitment to blog every single day for a year. That first year turned into two and eventually into five. Every single day. Five years. 1,873 posts.

I had little imagined the stories I would tell- the raising of my children (nearly the entirety of Baby E’s life), the loss of two babies, and the death of my father. At times it has been a devastating journey.

Many of you have been here since the start. Thank you for that. Thank you for the words of encouragement that you have showered on me over the years. I have not always responded, but I have read each one of them and treasured the person who left them.

So this is the end… A soft ending, actually, because old habits die hard. I’ll be back. Maybe every day, but probably not. I’ve made no commitment to myself.

I think I’m ready for a new adventure and perhaps a new adventure is ready for me.

Thank you again and God bless.

To Christ be all glory.

12-29-19 Grief and Lovely Freedom

These past two months, grief has been my constant companion- awakening me in the middle of the night, shouting at me in the silence and darkness of my room, staring back at me from the scars on my stomach.

It’s been in the sound of hospital alarms and the ringing of my phone that lurched me from my hard fought slumber.

It was in the anesthesia fog that marked the passing of my child. It was in the way the ICU nurses stopped asking what room I was going to visit, and just started saying, “Come on in, honey.” It was in the tears of the people around me. It was in the familiarity of the hospital hallways. It was in the holding of my father’s hand, feeling its warmth, and watching that fade.

I’ve lived a lifetime in the past two days, and even more in the weeks before.

This is hard. So unbelievably hard.

But in the midst of my tears, when everything seems like tatters in my hands, I am reminded of my hope.


I need Christ. Not the meek, quiet Christ of children’s Bible stories. I need the turning over tables, walking on water, weeping at graves Christ. The Christ that hates sin and death more than I do, the one that vows it isn’t forever.

I need the Christ that carried a heavy and bloodied cross through the streets of Jerusalem stumbling, and gasping for breath. I need the Christ that hung on a tree under a sun scorched sky, sipping vinegar, and struggling to breathe, while the blood poured down his face from the crown of thorns on his brow. I need the Christ that endured the absolute judgement of God in heaven – my substitute, my proxy.

I need the one the grave could not hold, the one who conquered death, so that death could not conquer me.

I need Christ.

And I have him. Through my tears and in the depths of my grief, I am not alone. I am never alone. And the peace that passes all understanding gets me through each moment. The joy of the Lord makes it possible to face another day. What freedom there is in Christ, what lovely freedom.

To Christ be all glory, in all things.

Psalm 27:4

One thing have I asked of the LORD,

that will I seek after:

that I may dwell in the house of the LORD

all the days of my life,

to gaze upon the beauty of the LORD

and to inquire in his temple.

12-27-19 A Glorious Day

After a long battle with declining health, my father ran into the arms of Jesus this afternoon. It was a glorious day, indeed.

I am grateful to have been by his side. It was quick and painless. And while I will mourn his daily presence, I will forever be thankful that his future was secure before he took his last breath.

For there is no greater gift than the death and resurrection of Christ himself, for the forgiveness of our sins, and our continual sanctification.

So the tears that fall, fall for me. For him, there is only joy.

1 Corinthians 15:55-57  (ESV)

55 “O death, where is your victory?
    O death, where is your sting?”

56 The sting of death is sin, and the power of sin is the law. 57 But thanks be to God, who gives us the victory through our Lord Jesus Christ.

April 17, 1940 – December 27, 2019
You will be missed.

12-25-19 Christmas Day

With my dad in the hospital, we opted for a quiet Christmas this year. No traveling. We slept in a little, ate breakfast, opened presents, and enjoyed our time together.

This is the second year my father has been in the hospital on Christmas day. Last year we were fighting for him to receive the basic necessities of water and nutrition, but this year in the ICU they are taking such good care of him. Knowing his needs are being met makes it easier to sit next to him in peace and quiet, holding his hand.

In many ways he is doing much better, but there are still uncertainties and his situation is precarious. We continue to pray that he will make a full recovery.

This past week has been hard- watching life race by from a hospital window.

I’m glad our Christmas was quiet. I loved being with my little family, watching the kids’ faces light up at their presents, and remembering the birth of our Lord.

12-24-19 Remind Me You’re Here

Today was hard.

“Remind Me You’re Here” by Jason Gray

None of my pain has ever caught You by surprise
Still it’s hard to trust You when I’m lost in the wondering why
But I’ll trade every question just to lay down and rest in Your heart
And I’ll reach for Your hand, though You led me here into the dark

And I won’t ask You for reasons
‘Cause a reason can’t wipe away tears
No, I don’t need all the answers
Just be here beside me
Father, remind me You’re here

If it’s random or providence neither are a comfort to me
Are You cruel if You planned it or weak if You allowed it to be?
Half of me is still believin’, the other half is angry and confused
Oh, but all of me is desperate and longing to be held by You

So I won’t ask You for reasons
‘Cause a reason can’t wipe away tears
No, I don’t need all the answers
Just be here beside me
Father, remind me You’re here

Get me outta my mind
And into Your arms
Where hope comes alive
And fear falls apart

I won’t ask You for reasons
‘Cause a reason can’t wipe away tears
No, I don’t need all the answers
Just be here beside me
Come be here beside me

So I won’t ask You for reasons
‘Cause a reason can’t wipe away tears
No, I don’t need all the answers
Just be here beside me
Father, remind me You’re here

12-23-19 Christmas Eve Eve

On the way home from the hospital this evening, we took a detour and drove through some neighborhoods to look at Christmas lights. I wanted to give the kids at least a sliver of holiday festiveness. This year has been hard, and we are still in the thick of it. We still don’t have definite answers about my dad, but we continue to pray for his healing and God’s will.

Thank you for your prayers.