Saturday, March 3, 2012

Lulu's vocabulary list

The world is her oyster, no doubt. Never short on words, we think Lucia's language spins are very clever (we might be a wee biased) and too funny!

smooshmallows = marshmallows

jumpoline = trampoline

yoyuck = yogurt

hunkacheese = slice of cheese "Mom, I'm hungy, can I have a hunkacheese, pweese?"

snugglufugus = "Mom, will you cuddle me? You can be my snugglufugus!"

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!

Sunday, February 26, 2012