730 Days

730 days. 104 weeks. 24 months. 2 years.

Two years ago today Ed had surgery to remove the brain tumor that was causing intense headaches. The preliminary test during surgery showed that the tumor was the feared glioblastoma multiforme (GBM) an aggressive cancer with life expectancy of not more than a year. A week later the pathology report would confirm the diagnosis.

Throughout the last two years with radiation, chemo, radical diet, more surgeries, and clinical trials, Ed was blessed with many good days. We were able to take family trips, make memories, and squeeze the joy out of ordinary days.

But there is no respite from a diagnosis such as GBM. Never do you forget that without a miracle, your days are numbered.

We all know we could leave this earth at any time. I've heard numerous times, "I could be in a car accident tomorrow and die before Ed." I've probably said it myself. And this week this fact became true for the mother of a dear friend.

But I don't live like I expect to die tomorrow. I've watched Ed this past two years and saw the difference in how a GBM diagnosis affected his life. He wasn't morbid, but every decision from buying a new pair of shoes to planning a vacation was affected by the facts of his disease. Sometimes I was surprised by how well he was able to set aside the diagnosis and enjoy the moment, but I know it was never far from his thoughts.

For the last week we have sat in vigil around the hospital bed set up in the living room. Our family surrounds us with their love and presence. My brothers and Ed's brothers take turns staying with him at night so I can sleep. We try to keep Ed comfortable with the help of morphine and oxygen and the advice of our home-care nurse. Sometimes his breathing is labored, but in the last 24 hours he seems to be resting peacefully. Only rarely does he open his eyes, and he hasn't spoken for days.

Life flows around Ed. We sit by his bed and watch out the window as the children play volleyball with their cousins. We pull out the table, fill it full of people, and enjoy my brother's omelets. We gather around for bedtime stories. We laugh, cry, and discuss the latest book we are reading. We say good-night knowing that if Ed would wake in heaven it would be his gain and our loss.

730 days of knowing that this good-bye was coming. I'm not sure if it makes it easier or harder.

But I know we've had 730 days of God's grace, and we haven't used it up yet.

 2 Timothy 1:9 Who hath saved us, and called us with an holy calling, not according to our works, but according to his own purpose and grace, which was given us in Christ Jesus before the world began,

 Hebrews 4:16 Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.

 1 Peter 5:10 But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.

On Zion's Glorious Summit

In the last post I said I wish I could write a different ending to our story. That wasn't exactly correct.

I do wish I could write 2019 differently. I wish I could grow old with my husband. I wish I didn't have to watch Ed grow weaker every day, spending more hours sleeping than awake, barely aware of his surroundings. I wish I didn't have to order a hospital bed, discuss advanced directives, and figure out how to explain to a three-year-old that their daddy is going to die.

But I love the ending that God has written.

I've been reading through the last chapters of Revelations, and I copied few excerpts here for my reminder of God's ending to our story.

I saw a new heaven and a new earth: for the first heaven and the first earth were passed away...
I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God.
 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain...
And he that sat upon the throne said, Behold, I make all things new...
He that overcometh shall inherit all things; and I will be his God, and he shall be my son...
And I saw no temple therein: for the Lord God Almighty and the Lamb are the temple of it.
And the city had no need of the sun, neither of the moon, to shine in it: for the glory of God did lighten it, and the Lamb is the light thereof...
And he shewed me a pure river of water of life, clear as crystal, proceeding out of the throne of God and of the Lamb...and on either side of the river, was there the tree of life...
And there shall be no more curse...
And there shall be no night there; and they need no candle, neither light of the sun; for the Lord God giveth them light: and they shall reign for ever and ever.
(Revelations 21:1,3,4,5,7,22-23, 22:1-3,5)

A few months after Ed's diagnosis he found a new-to-him hymn. It was so meaningful to him that he made copies of the hymn and took them to church so our congregation could learn it. I think now is the right time to share this hymn with you.

I imagine that Ed is hearing the song and longing to join the redeemed around the throne of his king.

On Zion's Glorious Summit

by John Kent

On Zion’s glorious summit stood
A numerous host redeemed by blood!
They hymned their king in strains divine;
I heard the song and strove to join,
I heard the song and strove to join.

Here all who suffered sword or flame
For truth, or Jesus’ lovely name,
Shout victory now and hail the Lamb,
And bow before the great I AM,
And bow before the great I AM.

While everlasting ages roll,
Eternal love shall feast their soul,
And scenes of bliss, for ever new,
Rise in succession to their view,
Rise in succession to their view.

Sanctus (after last verse)

Holy, holy, holy Lord,
God of hosts, on high adored!
Who like me Thy praise should sing,
O Almighty King!
Holy, holy, holy Lord,
God of hosts, on high adored!
Holy, holy, holy.

As usual, you can listen to the song through the video below, but if viewing this 
post by email click over to the blog.

In Slow Motion

A friend described my life as a nightmare of being stuck on the railroad tracks while a train bears down on you - and you can't move.

The description fits. I wish there was a way to escape this story. Can't I write my own ending? 

(Photos on this post are from my  walk "around the block." Watching spring emerge these last weeks has been restorative.)

Ed's MRI this week showed significant growth in the new tumor in the center of his brain. Because of the physical and cognitive decline we've watched this last month, I wasn't surprised. Still, it is hard to see confirmation of our fears.

Old barn covered in wisteria

Ed's seizure on Monday left him even weaker on his left side. At first he could not move his fingers or lift his arm. He has regained a little movement, but still can't use his left side much.

My brothers and Ed's brothers take turns coming every morning and evening to help Ed dress and shower. With the children's help, I can move him from his wheelchair to the recliner, but it isn't easy. I'm so glad to have the help of family.

Road-side poppies

In the past two years we've thrown a lot at Ed's cancer including multiple surgeries, chemo, radiation, diet, and experimental treatments. We knew Ed had the most aggressive form of glioblastoma multiforme, which has dismal statistics. But Ed had nearly two years of good quality life after his diagnosis, for which we are thankful.

But now we feel it is time to change tactics. We've stopped all treatment and are focusing on caring for Ed. Brain cancer patients rarely experience pain, and Ed appears comfortable and worry free. Our palliative doctor and home-care nurse have been helpful in giving us the needed equipment and information.

I don't know what the coming weeks hold, but I know that we'll need to hold onto God.

Abide With Me
by Henry F. Lyte


Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.

I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.
If reading by email, click over to the blog to listen to this hymn.

Sharing Others' Words

I have half-written posts that I'd like to share, but Ed had a short seizure last night, and I'm not in the writing mode this morning.

Some of my favorite websites have shared posts recently that were so good I wanted to save them to reread. Enjoy their insights.

Anita shares some profound thoughts on loneliness and our longing for God in the Seduction of the Sehnsuht Part One and Part Two.

The Mullet family has experienced far more physical illness than most, and Cindy shares on Finding Hope in Suffering

Shari Zook's words brought me to tears in What I Saw: Good Friday Reflections.

Sara shares a poem she learned as a youth that echoes today in Dying to Self.

Katrina Hoover Lee shared some of her favorite Easter poems including the poignant Gethsemane.

Desiring God shares on How To Make Urgent Medical Decisions for Your Loved One.

May these words inspire you.

One Day at a Time

For months, my general response to "How are you?" has been "We're living one day at a time."

The past few weeks this has been even more true. I can only focus on today. Or maybe this moment.

I can't dwell on the past because then I remember how much better Ed was last month, or last summer or last year. The days I thought were hard then, now seem easy. I wonder why I didn't appreciate how good I had it.

No, I can't focus on the past.

I can't focus on the future. I do have to make plans. I must make phone calls, line up supplies, and work out details. Sometimes I even allow myself to dream, to plan a summer book club or look up a new camping spot the children would enjoy. But I can't imagine how I'll make it through the next weeks, the next months, the coming years.

No, I can't dwell on the future.



A few months ago I didn't know how I'd manage if Ed lost his ability to walk. Now it's our reality.

How are we managing?

We "do the next thing" as Elisabeth Elliot said often. Each moment there is a task ahead of me and always there is strength for that task.

When I accept my present reality and walk into it, I find grace for the moment. 

The last weeks have held some good times. Ed and I enjoyed his niece's wedding. On Palm Sunday Ed's family was together at his mother's house. My family spent Easter Sunday together, enjoying the presence of my brother who returned from teaching English in the Middle East. And of course, Easter is a reminder that we have a risen Savior who gives us hope.



Enjoying Iraqi naan at our untypical Easter dinner.

But Ed's wheelchair is now necessary just to move across the room. His shaky hands make eating difficult. The weakness on his left side is more obvious. Every day I see another sign of his deteriorating health.

But our families are holding us up in very tangible ways. My sister helped me scrub the winter grime off the windows to let in the spring sunshine. Ed's brothers and my brothers have helped with various projects around the house such as building a wheelchair ramp and stacking firewood. If I mention that my faucet is leaking, I have brothers vying to fix it.

Many of you have emailed, sent mail, and remembered us in various ways. Thank you for your love and reminders of God's care. Your prayers are holding us up and are the reason we are finding grace.

A friend sent me the words to this song which have been echoing in my mind ever since. I know that often people reject God in times of suffering. My prayer is that I will hold tighter to Him as my only place of safety.

Under His Wings
by William O. Cushing

Under His wings I am safely abiding,
Though the night deepens and tempests are wild,
Still I can trust Him; I know He will keep me,
He has redeemed me, and I am His child.

Under His wings, under His wings,
Who from His love can sever?
Under His wings my soul shall abide,
Safely abide forever.

Under His wings, what a refuge in sorrow!
How the heart yearningly turns to His rest!
Often when earth has no balm for my healing,
There I find comfort, and there I am blessed.

Under His wings, oh, what precious enjoyment!
There will I hide till life’s trials are o’er;
Sheltered, protected, no evil can harm me,
Resting in Jesus, I’m safe evermore.

Enjoy listening to this song in this video. (If reading by email, click over to the blog to view.)

Book Review - Suffering Is Never For Nothing

One of the shaping influences of my life is Elisabeth Elliot. I read almost all of her book in my teens and early twenties. I also had the chance to hear her speak in person at several different events.

I remember sitting on a couch next to Elisabeth in the lobby at one of these events. I thought I'd bubble over with questions, but I couldn't think of anything to say. (Yes, rare speechless moment for Gina.) Elisabeth turned the questions to me asking how I pinned my hair into a bun. We ended up comparing hair notes (she also wore her hair in a bun.) That was when I realized that Elisabeth wasn't only wise and articulate, she was also kind, funny, and, well, human.

When I heard of Elisabeth's death a few years ago, I pulled the whole stack of her books off my shelf intending reread them all. I don't think I got past my favorite (A Path Through Suffering). This post contains affiliate links.

I rarely buy new books. I'm such a tightwad that I'd rather borrow books from the library or wait until I can find the book used.

But when I heard that a new book by Elisabeth Elliot had been published, and when I learned the topic, I immediately ordered it from Amazon.



Suffering Is Never For Nothing was compiled from a transcript of a small conference where Elisabeth spoke on the topic of suffering.

Elisabeth met suffering personally. Her husband, Jim Elliot, was murdered while trying to share the gospel in Ecuador. Cancer took the life of her second husband. Elisabeth has personal experience with wrestling with the hard questions of why God doesn't do something about suffering.

Her answer? He has. God walked the ultimate path of suffering and won the victory. For all of us who suffer.

This book is unlike Elisabeth's other books. The tone is conversational since it came from her spoken words. The prose is not tight like her other books, and I wonder if Elisabeth would be embarrassed to have her unedited script be put to print.

But I underlined many passages in this book and when I finished the last page, I turned to the beginning and started reading again. Right now, a deep theological tome would be too much for me to ingest. But when I read Suffering Is Never For Nothing, I can see Elisabeth's tall thin frame standing behind a lectern, with her soft but authoritative voice sharing God's Word through her life story.

And again I thank God for the way His grace in Elisabeth's life is able to strengthen me.

Bookmarks: Picture Books on Inventors

I love the recent trend that has produced many lovely picture-book biographies. These books aren't just for young children. I enjoyed the introduction to famous, and not so famous, inventors.

This post contains affiliate links.

So You Want to be an Inventor?

by Judith St. George, illustrated by David Small

Short blurbs on many inventors and fun illustrations make this book a winner for any child who dreams of inventing the next spectacular widget.

From the Good Mountain: How Gutenberg Changed the World

by James Rumford

Rumford uses lovely water-color paintings to describe what Gutenberg needed to print his first books. Also check out Johann Gutenberg and the Amazing Printing Press by Bruce Koscienlniak which traces the history of printing throughout history.

Now and Ben: The Modern Inventions of Benjamin Franklin

by Gene Barretta

How could one man give us everything from a postal service, bifocals, and world-changing documents? This book shares the practical brilliance of Ben Franklin which impacts our world today. Look for other books by this author such as Timeless Thomas: How Thomas Edison Changed Our Lives.

The Hole Story of the Doughnut

by Pat Miller, illustrated by Vincent X. Kirsch

Hanson Gregory was only a teenager when he invented the breakfast treat that millions enjoy. Learn of his brave deeds and colorful history along with the true story of the doughnut.

John Deere's Powerful Idea: The Perfect Plow 
by Terry Collins, illustrated by Carl Pearce

You might recognize the famous green tractors, but do you know how the John Deere Company began? Bright comic-style illustrations share the story of frustrated farmers and a struggling blacksmith. You may also like John Deere, That's Who! By Tracy Nelson Maurer, illustrated by Tim Zeltner.

Marvelous Mattie: How Margaret E. Knight Became an Inventor

written and illustrated by Emily Arnold McCully

She may have been young, and she may have been a girl, but that didn't keep Mattie from loving tools and building things. Mattie's invention of the paper bag is still used today. Soft illustrations show Mattie's life and sketchbook.

First to Fly: How Wilbur and Orville Wright Invented the Airplane

by Peter Busby, illustrated by David Craig

From a toy helicopter to bicycles to gliders, and, finally, the first powered airplane – these brothers’ hard work paid off. Richly detailed paintings and period photographs share their story in fascinating detail.

Six Dots: A Story of Young Louis Braille

by Jen Bryant, illustrations by Boris Kulikow

Most boys would have given up, but young Louis was determined to read even though he was blind. Braille was still a child when he invented the Braille alphabet. The child-friendly illustrations help tell the story of this young inventor.

Girls Think of Everything: Stories of Ingenious Inventions by Women

by Catherine Thimmesh, illustrated by Melissa Sweet

Windshield wipers and chocolate chip cookies are only two of the products you’ll learn about in this book with its short chapters. Learn about women who turned a good idea into a useful invention.

Whoosh!Lonnie Johnson's Super-Soaking Stream of Inventions

by Chris Barton, illustrated by Don Tate

Lonnie loved to build action toys. Even when he became a real rocket scientist, he didn't stop inventing. Bright illustrations introduce children to a modern inventor and scientist.

 

I only shared a few of the picture-book biographies on this list. I hope to share more soon. You can also check out my book list page.