Nothing to Say

It has been four years since Kimani’s heart surgery and I don’t have anything to say about it. I can still get myself worked up about it by rereading what I felt then, but today, right this minute it feels like this is the same as any other day. So I guess, for once, it is a very good thing that I have nothing to say.

She, on the other hand, has something to say... “Eat cake... eat it with both hands. You know you want to.”

Heartbreak #4829

The school psychologist has a voice like a child. She sounds much too young to be telling me that the classroom teacher has asked her to do an assessment of Kimani’s mouthing behaviors so that a formal plan of action can be created to discourage such things as eating the wood chips on the playground.

It never ends... the things that don’t happen for her as they are supposed to. These things, they jump out like a springing puppet in an old-fashioned jack-in-the-box. The twisted metal handle with the wooden knob is always turning, the song of simple notes is always playing... always, always, always... and then BOING! Heartbreak #4829. (But really, who's counting?)



She is not delayed. She is detoured. She will not be coming back around this way. She tromps on delicate feet into uncharted territory. Her tiny fists are balled up. If you were to pry them open, you would find the hearts of her parents, crushed, one in each hand.

A Cold Hard Place

August 2008
One day my unborn child, who had already enchanted me, was handed down a sentence, unearned and unjustified, and it became my passport to the molten center of my life’s core. In the beginning the adrenaline fueled by my fear protected me. After that, I cried and I cried until I was empty and speechless, and then I slowly learned a new language... one that gave me hope of a way out, one that reminded me that there may not be one.

And now I wait. I watch my baby’s body war with itself. I feed off the brief glimpses of normalcy... a coo, a cry of hunger, a dirty diaper. I stare into eyes that do not know what I know, that do not fear what I fear. I wonder if the coin tossed high will land on my call, and if I will still be able to gaze into these eyes tomorrow. I am afraid to leave her, afraid to go home, afraid that she will die while I shower, or kiss a different child goodnight.

I pray, (and perhaps I bargain and make undeliverable promises). I walk alone into the temple with my paltry sacrifice, and I go one on one with God. I am terrified that He will ask for this child, and that I will not be able to answer.

Specialists, with stacks of medical degrees, confer at her bedside. They can not give me the answer. They can not write the end of this story for me. These chapters that hang between living and dying are fraught with needles and drugs, wires and tubes... the life support tools of the trade. Fancy machines monitor her score with numbers blinking red and ever changing. Alarm bells ring for more troops and battalions charge in to rescue her in these moments.

I am so tired in my head. I feel like we have been marching for days on end with no food or sleep. I feel as though I might drop her before we reach our destination, and that if I do, this will all be over, and her death will go on forever.

So I sit, awake in the cold hard space between life and death, watching her, waiting on her. I touch her soft warm skin, bruised and torn. I lean in close and sniff her baby scent. Heaven’s perfume still lingers on her. I swallow down everything that is outside of this breath of her. I push it into the tight ball that has taken over my stomach. I cannot let anything distract me from memorizing this instance of her... because I’ll need it someday, no matter how this story ends, I know I’ll need it.

(I read this post and it took me back in time to a place I’ll never forget. She does a much more eloquent job of explaining it, that cold hard place where a parent goes to wait for the answer.)

The Blessing of Tragedy

I have a confession to make.

There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.

Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.

Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?

I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.

Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.

And then the Lord God reached down and slapped me so hard my head spun.

Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.

I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.

She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.

Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?

I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.

As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.

As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!

And that is the greatest blessing of all.

Warriors

We were drafted. My only way out would have been to take her as the first casualty. Before I played this game of Risk, I knew I wouldn’t deploy that sniper. So now, here I am, far from the battlefield still dreaming of little shattered bodies.

This time last year I was living in a NICU chair, angry and sad, but still unaware of the real battles that lay ahead. I didn’t know yet that my baby and I had entered a war. I didn’t know that her aorta was too narrow and wreaking havoc on her heart and lungs. I didn’t know that a teensy bacteria could find its way into her brain and eat away at it. I didn’t yet understand that death really does come for babies.

Sarah, Rita, Jasanna, Miracle, Jayshawn, Bella, Savanna, Ryan, Kimani, Ashlyn... our battalion... some died, some made it out, some are forever wounded, some are still enlisted. I wonder if their moms feel like I do. I wonder if their dads play Guild Wars and kill fantasy creatures in dark livingrooms.



I wonder if I can ever get the shrapnel out from under my skin.

(Thanks go to my dear husband for providing the screen shot of his Guild Wars character (named after me, awww) standing over her latest trophy.)

Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.



The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.

Crossing the NICU Styx - Part 2

(If you haven't read part 1, you probably should start there.)

From across the water a shining figure appeared with an entourage and great fanfare, and even Cerberus whimpered in his presence. An angel of the Lord, I thought hopefully. He stared down at my child and the foreign words tumbled out, “Coarctation of the aorta... removal of the section and reconnection, deep hypothermic circulatory arrest...stopping blood flow to the organs, av canal...heart lung bypass...pericardium...sewing patches into the ventricles.” He spoke for some time describing his plan to secure the golden coin and the great risks it entailed. I could not listen to him, for my own voice was shrieking in my head, “He’s going to kill my baby, he’s going to kill my baby...” With sudden clarity I saw that he was not an angel. He was just a man, a man with no scars on his palms.

There are moments in life when you freeze, dig in your heels, and refuse to accept reality. You screech to a stop and the spinning world crashes into your back with its full force, knocking the air out of you. In a split second its pummeling affect leaves your body torn between puking and suffocating. With all your might you push back against it, struggling to reverse it just long enough to undo the tragedy that has befallen you. When that striking moment stretches into days and days stretch into weeks, you realize that your core is being smelted by God the Blacksmith. It hurts so bad.

Throughout the days and nights, I could hear the prayers of those in the Land of the Living beseeching the Lord with her name, Kimani... Kimani... Kimani. Hundreds, maybe thousands of voices pleading for her life. Mine too.

On Day 91, the gates of Hades opened up to receive my daughter. Cerberus drooled in anticipation. He would not let me pass with her. Somewhere beyond she would lay nearly frozen, disconnected from life, while the surgeon’s hands worked to fashion graceful conformity from a grave aberration. I gave her back to God that day. Still though, I called down every promise I could remember from His book. Then my husband and I, alone among the strangers on the river bank, waited the day through to find out if we had our baby or not. If not... if not... then part of me would forever stay there in that dark place.

Finally the heart surgeon came out to find us. His radiant smile gushed through my veins. He placed a glittering gold coin in my hand and I clutched it tight.



I paid it to the ferryman just as soon as I could and he loaded us into his boat. We made it almost half way across the rushing waters, almost. I was so focused on the light coming through the door to the way out that I did not see him coming. Cerberus. He lashed his tail at her, ripping her out of my arms. She fell into the water. No, not water... blood, poisoned blood... blood sepsis.

I screamed at God. I am no Job. I told Him the truth. "I am close to insanity now," I cried. "I need to be released now," I begged. He replied, "Go find her." He did not mean my daughter.

She was just down the bank a ways with her infant son. A mother like me, but not. A brokenhearted child like mine, but not. She needed me. Together we watched over our babies as their bodies labored to recover. Charon tormented us, flipping golden coins in the air. Heads they live, tails they die.

No, it doesn’t work like that I tell her. There is a God I tell her. Her eyes are hesitant but she wants to believe me.

After 113 days in the abyss, Kimani, all seven pounds of her, safely crossed the NICU Styx and entered the Land of the Living. I thank God everyday for sending her back to me.

Crossing the NICU Styx - Part 1

Five hours after my daughter was born into a comforting pool of warm water, strangers in scrubs came and arrested her. They carried her down into a world where life is in limbo. Her crimes were a broken heart and a narrow aorta. Her sentence would be long. Surely my sins were greater than hers...perhaps this was my punishment?

I followed her and found myself on the wrong bank of the river Styx, wandering lost, searching for the right coin to give Charon so that he would carry my baby back across to the Land of the Living. He rubbed a cold hand on her stomach. If only she would eat. Maybe if I gave up on nursing and let her have a bottle. Maybe if I gave up on the bottle and let her get a tube in her stomach. If only food were the answer.

My sweet daughter presented every sacrifice she could. On Day One she offered up her tiny hand and accepted the needle coursing with antibiotics. As time went on she would give over her arms, legs, head, and neck to the various needles. She submitted to multiple nose tubes, throat tubes, and a g-tube in the hopes that the food and oxygen they supplied would give her the strength to cross over.

But Cerberus attacked her, snapping his bacteria-filled jaws down on her. Not once, not twice... but again and again he cut his teeth into her, slobbering on her, filling her with poisonous creatures invisible to human eye. They tried to kill her but the needles flooded her with even stronger weapons of destruction.

And me? I sat there staring across her, across the river at the doorway to the Land of the Living and I shook with fear, with agony, with anger. I wanted to rip it all off of her and scoop her up in my arms... and run. The raging desire to escape with her was quelled only by the knowledge that she would be dead before we reached dry ground. I felt my inner self be slowly crushed and compacted. There was nothing left to me but a heavy rock in my stomach and my faith in God.

I was not alone on the river bank. I saw other mommies with other babies with other tubes and needles who had committed other crimes. And I saw Cerberus wrap his scaly tail around other tiny bodies and pull them backward to a place where only God could follow. I cried the tears of vicarious trauma... a suffering I’d never known existed.

Charon tapped a bony finger on my baby girl’s chest. Somewhere within her, somewhere inside the greatest artery, or perhaps hidden deep in a pumping ventricle was the golden coin he wanted. There would be no trip back across the NICU Styx without it.

(Continue to Part 2)