Wednesday, February 29, 2012

It is well

It was an Arizona winter in 1997...

Having been invited to sing special music for our church's worship service, I'd asked Emily, my dear friend, to accompany me on the piano. My selection -- It Is Well with My Soul, a moving old hymn written by Horatio Spafford upon learning that his four daughters had tragically perished during a shipwreck. This grieving father had penned the words as he traveled over the darkened waters where their ship had gone down. Knowing the story, I wanted, so wanted, his words of strength and peace in God to be my song.

Our son, Caleb, was about four months old then. Although a delicate three pounds at birth, he'd so far disproved gloomy predictions by becoming a happy, pudgy baby. Content, he nursed well and flirted adorably with his mama. Diagnosed with a devastating and rare genetic illness, our boy already had a shunt placed in his brain the day he was born due to hydrocephalus (fluid on the brain). His arms were missing the radii which caused the ulnas to bow like small half moons. Both hands were missing thumbs but he had eight perfect fingers. We were smitten with our blue eyed baby and thrilled that he had arms at all since several ultrasounds mysteriously indicated he would be born armless. Nevertheless, specialists asserted that despite his apparent health, his bone marrow would, without a doubt, fail him at some point in his early childhood.

I craved information about the new and unwelcome guest of ours, this shadowy figure with a strange name called Fanconi Anemia. But the more I learned, the more furiously black clouds gathered and the outlook went from worse to worse, to worse yet. Caleb would be extremely susceptible to leukemia and other cancers, he would have complex endocrine (growth) problems, viruses that were relatively harmless to most would likely annihilate his immune system. There was no cure. With each cruel wave, the current swept stronger. Why... WHY?! was there not a flicker of hope?

Out of desperation, I called the respected geneticist in New York who had identified a chromosome fragility which lead to Caleb's diagnosis. I must have hoped that since she was on the forefront of FA research, she would have something, anything, helpful to offer. (Unfortunately, I discovered that there is a good reason she, a PhD, does not normally see or interact with FA families.) From her removed, sterile lab, she pulled up my son's file, took inventory of his "anomalies", crudely rattling them off under her breath. But then, before I could catch my own breath, she continued, "Your son won't live much past the age of two by my estimation." Blindly, I managed to thank her, slowly moving my thumb to the OFF button.

Closing Caleb's bedroom door to practice my song, I tried to mean the words I sang. It was no use... on hands and knees, one sob followed another. "It's not well with my soul, Lord. It's not only not well, it's writhing agony. I can't sing this because I'm not sure I can mean it. Oh God, if you are even really there....I want you to know that I'm no Abraham. I cannot offer up my son. In fact, the most shattering truth is, that if I were given a choice between my relationship with you, Father, or my son's life -- I'd choose him. My son."

From the time I was a little girl, I've talked to Him. I had known my dear friend to die as a young teen which was truly life altering, but mostly had not experienced severe, lasting pain in my bright young life. When Steve and I had learned that our baby still developing in utero had not formed normally, I had sensed a warm wave of love from above -- as if we were loved enough to be entrusted with this child. But now, I couldn't hold on to it. The soft rug underfoot had been yanked, pitching me into unknown territory.

Immediately, I sensed the shift. What if God was a figment of my imagination and all this, my life, Caleb's illness, was not a part of some larger purpose or redemptive plan but a random series of circumstances? I confided in Steve and in my parents with how bitterly I wrestled, how my heart stormed. Without a glance of disapproval, they listened. Silently. And they prayed...

I struggled now to direct my prayers to Him. The lights had gone out completely, the night became starless and I threatened to suffocate on gray blankets of despair. There was no comfort in a godless world -- it was a shifting sand, mean, purposeless and vain. Void of eternal hope. Beauty dimmed as my sight wavered. I couldn't take this either, I soon realized. No, this, this place without God was far worse than pure pain or heart-piercing sorrow. This place was a loveless pit not unlike hell. Each twenty four hours the longest descent imaginable. And so I turned back, bowed low and called out.

Oh, how He came. My God heard me... I told Him that I wanted faith but no matter how hard I tried, I just couldn't conjure it. He had to be the one to impart this faith-gift to me. Would He? I didn't want one single night more without Him, without the warmth of His face. I couldn't know what cross I'd be called to bear but if He stayed with me, helped me, I wanted Him more than relief. I'd discovered that His love truly was better than life. "I believe, help my unbelief!" was my cry one day. I'm unable to describe the soul crafting that the Potter did within this brittle, cracked vessel, but He set my feet back onto solid ground. He healed my disbelief and covered me with blankets of down, balming my sore soul as a sore throat with honey. I cried good and well. It was well with my soul.

Standing beside the church piano, I'd sung up to the refrain, And Lord haste the day when my faith shall be sight. My voice caught now though, my heart so full that only tears flowed. Emily paused at the piano. Gaze shifting from the rafters to the faces before me, I saw then that everyone, every beautiful saint in that room was on their feet. Weeping with full abandon we sang,

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul!

15 comments:

Anonymous said...

Hannah is learning this Hymn on the piano currently and it is always as balm to my soul when I hear her play. Thank you for sharing this deep part of your story--the story God is writing of His amazing work in your life and what He has taught you through such deep deep waters.

In Christ alone, Adela

emily said...

Oh, friend! Thank you for sharing this intensely personal and real struggle. I had forgotten that we played that together but I remember now. Yes, it is hard to sing those words and people do not know at what cost they are sung. Truly through the fire of doubt and struggle our faith is born. Beautiful...

Linda said...

Amy, Can't think what to say and for me that is something. Caleb's life was a wondrous miracle that God lovingly placed into our lives to teach us so much! Thank you for sharing your heart! Mom

Erin said...

Awed by your honesty, touched by your beautiful faith. Thank you for sharing your heart. It's a privilege to know you better.

Naomi said...

Thank you so much for your honesty! What beauty in pain...no other words here...

Ginger said...

I remember that evening...I remember standing and knowing it was momentous and feeling like it was far more so than I knew. Something far bigger than myself or my understanding was happening. Thank you for sharing your heart, your journey, your insight, your love and, of course, your dear boy with us. This is authentic faith. I love you!

Susannah said...

Just beautiful writing Amy, not a dry eye here at my kitchen table. Thank you for sharing this story with us. It is so tender, it is so special and so very intimate. I always remember you telling me how you were told Caleb would not be able to nurse, how you worked with him, you were patient, and he learned and thrived. When I was working as a L&D nurse I carried that patience and hope with me to the families I was working with. Caleb was a gift, and that gift continues to give.

Amy said...

Dearest friends (old and new),

I can't thank you enough for reading this crazy-long post, for placing your hand out to hold mine as I recall these things that God has done. It is meaningful, so meaningful to me...

Tracy said...

Amy - in light of our conversation this week, I read these comments and just smile to myself! To God Be the Glory, friend. Thanks for being open to be used by Him even when it is difficult - Love you so much!

Kirsten said...

I'm so glad you started blogging again, Amy. You have such a gift for putting beautiful, haunting, healing words to the "deep deep waters"(as Adela said)of your soul. Thank you for sharing about Caleb's early months and how God met you in the midst of deep pain and joy.

Michele Dickison said...

Amy, Thank you so much for sharing this story. I hope God will give you at least a glimpse of how your story has touched (and continues to touch) so many lives. The way you have responded to the suffering God has allowed in your life has fruit far beyond what you will probably ever know. Thank you.
Michele

Genevieve Thul said...

I have only one sentence: this needs to be part of a book.

tonia said...

Amy, the comments here are so right...you have a powerful voice and your story is so important. Thank you again for sharing it.

Amy said...

Amy, I'm sure you don't know me, but I was there that day at the church, and my memory of you singing that song is as clear as the day you sung it. While I didn't know your internal struggle I knew bits and pieces of Caleb's story and that moment was so completely overwhelming. It poured out God's love to us in such an intense way that I don't know how it couldn't have changed something in the heart of every person in that room. How it couldn't have taught us something about suffering and faith. That one moment of your voice catching spoke so much more than you will probably ever know, and I am so grateful for it.

I have since relayed that moment to other people in my life. And I have played it back in my head several times over the years when I have had times of my own suffering. Thank you for singing that day. And thank you for writing about it so that I can finally say thank you. Blessings!

Angie Tolpin said...

What a powerfully written testimony of God's goodness in the midst of painful circumstances and life suffering. Amy, you have truly glorified God here. Thank you for sharing this intimate part of your life with me.