A gift

Stacy Kramer, and TED, thank you so much for this.

I wouldn’t change my experience.  It profoundly altered my life in ways I didn’t expect… So the next time you’re faced with something that is unexpected, unwanted, and uncertain, consider, it just may be a gift.

Stacy Kramer, brain tumor survivor, so eloquently told the story I’ve relayed to countless individuals.  I think a lot of us who endure life-threatening illness come out to see what a gift it was.  As I’m sure it was for her too, many of my nights were sleepless; there was a lot of pain. I wondered a million times Why me? How can I get out of this? Please, can someone make this stop?!  But standing on the other side of the whole ordeal, as I am now, it’s so much easier to see how the longest days would make me a better person in all the ways I needed, introduce me to hundreds of people I could learn from or impact, and teach me that there is more to life than anyone ever had thought.

So grateful for my gift.  I wouldn’t wish it upon you (you wouldn’t be able to see it was a gift until it was all over anyways), but I’m thankful to God that he brought my scariest, darkest, most painful experiences into something I’m now so grateful for.  May His light keep shining through the darkness.

God’s in the tremors

With my surgery early in the morning, I cannot find rest.  In the meantime, I’ve been reading through some old entires and found this one.  God is so close by, even in the dark places, even in the tremors.  What mercy.

I don’t have much to say other than I’m afraid.  Honestly? I’m tired of all of this.  It’s not the life I would have chosen for myself, but as my mentor always reminds me, just like Jesus, we must say, “This is my portion and my cup.”  (Psalm 16) As nervous as I am, and as much as I look for God’s glory in all of this, I believe it will end up just fine (Romans 8), and I pray that God would use me and my story to bring Glory to His Kingdom.

Ann Voskamp posted a beautiful article on her blog yesterday entitled The Horse Principle and I dare you to read it right now.  A couple lines that resonated with me:

How did he know? That even when we’re broken, we battle onward, all the fixing coming in the moving forward… From where we stand, we can’t see whether it’s something’s good or bad. All we can see is that God’s sovereign and He is always good, working all things for good… My focus need only be on Him, to only faithfully see His Word, to wholly obey. Therein is the tree of life.

“Whatever You may do, I will thank You.
I am ready for all; I accept all.

Let only Your will be done in me…
And I’ll ask for nothing else, my Lord.“

~Charles de Foucauld

Do any of you feel like you’re with me right now? We don’t know why life is how it is, but despite that, we know that our beautiful Lord is sovereign and always good. If we know that, then why should we worry? Has he not come through again and again?

I truly believe: “All the fixing in the moving forward” (Ann Voskamp)

May we breathe in and out, YWHW, or Yah weh, calling our Lord with each breath even when we are too weak to utter words.  [How to Breathe Through Hard Times] He is with us, orchestrating something much bigger and grander than we can see right now.

Please pray for me tomorrow (Wednesday) and through the coming weeks as I recover from a very invasive surgery.  We are hoping this will be the last.  May God be glorified in our sufferings.  Only then can we endure the pain with joy and gratitude.

Remember, “God is always good and we are always loved.” – Ann Voskamp

Wait.

Before I leave for Europe, I want to to leave you with this. I found this today, and apparently I posted it somewhere else – just months before I found out I needed a liver transplant.  Today, these words ring so much truer today than when I posted them before.  This is for me and you, everyone out there who is tired of waiting, feels it will never end, and is frustrated trying to see the purpose.

Oh what I have learned in the waiting…

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, “Wait.” 

Wait? you say wait? my indignant reply.
Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word. 

My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I’m needing a ‘yes’, a go-ahead sign,
Or even a ‘no’ to which I can resign.

You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.” 

Then quietly, softly, I learned of my fate,
As my Master replied again, “Wait.”
So I slumped in my chair, defeated and taut,
And grumbled to God, “So, I’m waiting for what?” 

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, “I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

I could give all you seek and pleased you would be.
You’d have what you want, but you wouldn’t know Me. 
You’d not know the depth of my love for each saint.
You’d not know the power that I give to the faint.

You’d not learn to see through clouds of despair;
You’d not learn to trust just by knowing I’m there.
You’d not know the joy of resting in Me
When darkness and silence are all you can see.

You’d never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you’d not know the depth of the beat of My heart.

The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that’s beyond getting just what you ask
From an infinite God who makes what you have last.

You’d never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I’m doing in you.

So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait.

Russell Kelfer, 1980

Thank you to my precious donor family, whoever and wherever you are, for choosing to give the gift of life.  Because of you and your sweet son, I am fulfilling my dreams all around the world.  My heart is swollen with gratitude; I could never find the words to express it.

Not them

It was a wonderful Saturday with my mentor, Rita, as we sat down for another quiet yet passionate discussion about the blessings we receive or the issues we face.  Rita is special to me as she is the mother of a friend I grew up with at school since first grade, and she was my seventh grade science teacher.  We had not seen each other in years, and we were purposefully matched together in a mentoring program.  God had a hand in the match up as we have strikingly similar personalities, struggles, and challenges.  Rita has gone through many relationship and health obstacles and has fought through everything with grace and beauty.  She has much insight on suffering and living fully despite it, noticing God’s blessings each step of the way.

Rita

And so on this particular day, I mentioned to her how I’ve been in heightened realization of my physical weaknesses lately. I told her how I’ve felt opposition from a couple of individuals as they sometimes judge me independent of my pain and fatigue, my daily struggle to live as normal of a life as possible for a patient with fibromyalgia, chronic pain, and a past of 17 years of liver disease ending with a liver transplant and two subsequent surgeries. I bemoaned how I deeply wish they could see my point of view, how desperately hard I want them to realize what I deal with each day so they could tread more cautiously and deliberately.  Of course, I meant it figuratively as in wishing they could just imagine what kind of physical and emotional pain I deal with and how my various thresholds can be so challenged at times.

Pausing to choose her words and then in her gentlest voice, she said this to me.

At times, we so greatly wish for people to see where we walk, yet at the same time, we try harder to hide it from them and pray in the depths of our hearts that they will never truly know what we experience.

As frustrating as it is, I am realizing it’s a good thing these people cannot relate to me because to be able to fully do so, they would have had to not only journey beside me through the years as they have done so diligently, but rather physically suffer through exactly what I have over the years.

My mind stopped immediately at this realization.  I whispered intently, “I wouldn’t wish this on my worst enemy.”

“Yes,” she continued. “There are times I cannot even tell my daughter exactly what I’m going through. It would kill her to know.”

Oh how true. For example, I have been protecting my these loved ones, shielding them from the worst, ever since I was in elementary school. They don’t know this, and I don’t even want to tell them now. To hide things like this from people so close almost sounds like a punishable wrongdoing. Yet we continue on in order to protect our loved ones, and we hold our breath hoping and praying they will never go through what we have, no not possibly that. Not this. Not anyone, but especially not them.

And so I proceed, journey on, more tolerant of their judgments, tempers, and inability to understand as I strive to daily thank the Lord that they just can’t comprehend what I’ve endured.

It’s not easy; I will assure you of that.  But when you love people, it’s really the only option.

May we take pleasure in our sufferings as they draw us nearer to our Lord and Him to us. He has willingly been through anything we could ever face in life just so He can truly, 100% understand what it feels like and in the meantime, guide us triumphantly to the other side.

Seeing God’s back

Author Ann Voskamp’s blog and book One Thousand Gifts (New York Times Bestseller) has often been a hope to me on long days and an ever-present reminder on all of the rest.  She challenge readers to be grateful for every moment with “a dare to live fully right where you are.”

No matter how dark that place is.

I was reading one mother’s account of losing her daughter at 18 weeks gestation.  Her thought-rendering words express such emotion, such grief, and in her blog entry, A Star Hung on My Soul Sky, she shares a comment Ann posted on her blog.  Once again, Ann’s words move me exactly where I am in my life right now, exactly as I am in this moment.  I pray they will move you as well – wherever you are, however you are, even if you are glancing up right at God’s back, crying to see His face.  God’s in the tremors.  Read…

In time, years, dust settles.

In memory, ages, God emerges.

Then when we look back, we see God’s back.

Wasn’t that too His way with Moses? “When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by. Then I will remove my hand and you will see my back” (Ex. 33:22).

Is that it? When it gets dark, it’s only because God has tucked me in a cleft of the rock and covered me, protected, with His hand? In the pitch, I feel like I’m falling, sense the bridge giving way, God long absent. In dark, bridge and my world shakes, cracking dreams.

But maybe this is reality:  It’s in the dark that God’s passing by. The bridge and our lives shake not because God’s abandoned, but the exact opposite: God’s passing by. God’s in the tremors.

Dark is the holiest ground, the glory passing by.

In the blackest, God’s closest, at work, forging His perfect and right will. Though it is black and we can’t see and our world seems to be free-falling in and we feel utterly alone, Christ is most present to us, eye beam supporting in earthquake. Then He will remove His hand.  Then we will look.

Then we look back and see His back.

He is close […] even in the blackest grief…
A gift in the grief… The Glory of God passing by in the dark.

I love you … and so pray.

[…] Love, the star that never falls…

Aaron Shust – Carry Me Home (Album)

Lord bring me home again
I’m no longer able
To bare the bitter winds
Or the heavy rains
I’ve long been settled
Lord without comfort
Just a man on an earthly throne
Headed for the grave

Carry me home
Sweet Jesus lift me
Until I’ve flown
The shadow of shame
Your love alone
Lord Jesus mends me
Lift me up
Oh Lord carry me home

Lord I’ve been branded
A loyal sinner
Seems like forever
Since I said Your name
I’m just a pilgrim
Still afraid of dying
But the sea is shinning brightly
With Your grace

Carry me home
Sweet Jesus lift me
Until I’ve flown
The shadow of shame
Your love alone
Lord Jesus mends me
Lift me up
Oh Lord carry me home

Through it again

I started this post Wednesday night after I had the procedure done to open the stenosis in my veins.  I’m going to finish it now and get it up for you, but please note I’m dealing with a computer issue.  To get the full effect, you need to see two imaging printouts I have, BUT my scanner decided it doesn’t like my computer.  So check back for that!  🙂

It’s the middle of the night on G-101, the Transplant Special Care Unit at the Cleveland Clinic.  It’s 2.29am, to be exact, and things aren’t exactly quiet.  The buzz of new transplants is in the air.  Several new patients are joining the floor, and more are waiting in the post-surgical ICU to come up.  The nurses are busy, and thank goodness I’m not needing them too much tonight.  Other than pain meds every two hours and anti nausea every six, I’m hanging tight dealing with my never-ending insomnia by getting some work done on my computer.  I still have that wide-awake yet very drowsy feeling of post-anesthesia and pain meds.  I just ate a bowl of Cheerios and am sipping on some milk, mmm.

Yesterday’s procedure went very well.  Dr. Sands went in through my ribs and threaded a stent to where my left renal vein and portal vein connect.  The stenosis in the reno-portovenous anatomic stricture was very bad, and the doctors were thankful they caught it in time.  The stent is now in place, and…

… apparently that’s where I got distracted, fell asleep, decided to call my nurse for more meds, etc.

So anyways, Thursday’s ultrasound showed the stent was doing well, and we saw increased perfusion to my liver which is exactly the result we wanted.  With such a narrowing, my liver wasn’t getting enough blood in/out.  So now the stricture is wide open with blood evenly flowing as it should.

I have a “before” and “after” scan from my doctor that shows several cool things, including all of the new blood flow to my liver.  When my scanner decides to work, I want to post it for you.

For now, thank you again for all of your prayers!  Tomorrow I go back to normal life – driving, events, nannying… everything I love so much.  It’s been (almost) six weeks since my splenectomy and other than incisional pain and referred nerve pain in my left shoulder/arm, I’m doing very well.  I’m back in sewing class, I’m participating in an event at school tomorrow about our Ireland trip, I have a busy social schedule, and I’m finding time to rest and read and enjoy these slower days before things speed up in the new year.  Right now, I feel safe and content.  I figure if I’ve been though this much, if God’s carried me through pain this deep, then how much worse could it really ever be?  God is my provider, and “an ever present help in trouble.” (Psalm 46.1)

Remember that this week.  Oh how He loves us.
Amanda