Danger of Silence

I have been silent before. It comes form motions, inertia from meeting the needs of the immediate. It hushes the responses and confuses the thoughts so they are nothing but a cacophony of voices. It is your own voice that feels like the chords have been cut. It is rooted in the routine of laundry, work, children, and exhaustion. Silence makes you feel unimportant.

I started this blog to rail against it. It use collected, unaccounted for minutes to write, to use my voice instead of sit on facebook or wrap myself in a movie. To become the observer, the constant listener. I needed it to shout the days, the lessons... to chronical the life I live. My sons... my daughter... my husband... my faith.. my job... my passions... my own voice contributing the the symphony of sound and need and humanity.

It is dicipline to speak... to write. There is a danger in not writing. There is a danger in remembering the things that identity is knotted to in inseverable ways.

Forgive spelling. Forgive the error. I just had to think. To speak. To wave my words frantically at myself to remind myself that I am still in here. That God still listens. That there is liberation in the process.

New Clothes

^{Apparently, I need new clothes. The ones that I am wearing don't fit. They are too binding. Too heavy. Ugly at times. I guess that is because they really weren't made for me, but I cling to them like some victim on "What not to Wear."}

^{"Let the peace of God reign in your heart." I heard this and the clothes that I wore to church that day, feel tighter, closing around my chest in a heaving anxiety attack. I came dressed in fear. I have chosen impatience as an accessory. Doubt coordinates well with these things. I chose the wrong clothes to walk through the circumstances of life this week. But peace sounded better than cotton. It sounded like a fabric that could hold me together. It sounded simple, classic but so overwhelming to choose because to dress in patience, compassion, humility, gentleness, and kindness requires a vulnerable undressing, a nakedness before God.}

^{Chosen? Holy? Loved?}

Deep breath.

Forgive. Breathe. Put on love. Visibly. Be thankful. Do everything for Christ.

I have to chose to wear new clothes. They are beyond circumstances and they are beyond the datedness of the times we live in. They always fit, when we choose them. They are beautiful. It doesn't mean that I won't feel doubt, fear, or impatience; it means that these things won't bind me. These things deteriorate so easily; they leave me so exposed. I choose new clothes unified by love that I am incapable of weaving.

^{Colossions 3: 12-17. 12}Therefore, as God's chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. ¹³Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you. ¹⁴And over all these virtues put on love, which binds them all together in perfect unity.

¹⁵Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. ¹⁶Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God. ¹⁷And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

Sweet Potatoes

Who learns how to eat with sweet potatoes? My daughter apparently. All Iliana has ever had is bottle with bitter barium. Yumbo. Or... not so much. The OT Mo came in with a jar of baby food yesterday and I almost gasped. It confirmed that this grandma was as crazy as she looked. She looked like she should retire in Santa Fe. You know what I mean?

But, in went the sweet potatoes. She was ready to eat. Small success. Elation.

Today, as they put my tubular baby in my arms, reality set in. I watched as her feeding tube, an unpredictable red rubber tube slowly slid out of her small intestine. Process this: Iliana has a hole in her skin that goes to her small intestine. This is how she is fed. Today, gravity won, and it slowly slipped out of this hole confirming what I must not forget; in spite of her strength, she is fragile.

So, up came the blue scrubs and army of three (surgeon and nurse practitioners) and so ended the feeding session. Temporarily. After a chinesee firedrill that included an emergency trip to the underworld (radiology). Everything was in place. Excellent. Minor crisis adverted.

OT Mo came back and we attempted a bottle again. Now, I do believe that she has the best of intentions. I acknowledge that she knows more than me about feeding babies like Iliana, but she does not know Iliana. I was told that she was revered at Children's Mercy. Revered is a strong word. It belongs to classics in art, literature, and those that attempt human divinity. But, we she snatched the bottle out of my hand for the "take two of Iliana having a bottle" I am certain that I glared. If I were superhuman, my retina might have burned her hand. Iliana didn't know what to do with the bottle. She pushed it with her tongue. She rejected the feel and the foreignness of the shape. Failure. Deflation.

At the end of the day, I would rather remember the sweet potatoes of the journey. They are more hopeful, but the formula nags at my fears for Iliana's progress.

Sounds

Iliana's heavy chest rises and falls on her own today. The monitors that I have learned to read with sufficient fluidity show that her heart and lungs are working slightly harder to keep up, but they are.

She looks right at me, as if to ask, "Mommy, hold me and take me home." Maybe these are just the things that I want her to say. But there is not sound.

Outside I hear all sorts of sounds of the ICU. Phones, conversations in the foreign language of doctors (the language of trauma that I have learned with some fluency), heavy steps of other parents who carry even heavier fears and hearts, and nurses asking for help from their fellow nurses.

All these sounds seem muted by the sound that will not come. Iliana cannot make sounds right now. Something in the surgery hurt her vocal chords. She turns to me, open mouth, trying to make something come out. With silent frustration and confusion she sticks out her swollen lip. So, she has to learn to compensate and she speaks with her eyes.

Perspective

The child down the hallway is dead. Her parents are planning her funeral and experiencing tremendous grief.

My child started breathing on her own today. Tonight our family is experiencing tremendous joy and planning for her to come home.

Thank God for breath. Thank God for comfort in the midst of the darkest grief. Thank God.

Use Your Words

Dadrian is learning to speak. For a 2 year old, he does remarkably well. I eagerly encourage him to, "Use your words, son." If he can slow down, and process it, he can articulate what his understanding, need, desire, or feeling is. If he is beyond this, he erupts a cacophony of sounds that are not words. There are moments where his unbridled emotion inhibits him. Whatever the emotion is, it is effusive. It all comes too fast, and he can't tame it with his tongue.

We teach our children to articulate feelings. We teach them to say, "Thank you God" as the simpleist of prayers. We teach them to communicate love, and frustration. They learn to ask for help when they need it instead of scream or fall to the floor. (Life is sometimes just too much, and falling on the floor is the preferred option) We teach them to ask questions. Somehow, they learn from watching us how to use words in their defense, or more sadly as weapons. We teach these things, and yet we forget.

I feel that we forget the basics. We forget how to use our words in they way they are intended. We say what we do not mean. We lie to ourselves or others for many reasons that in the end make little to no sense. We fall to the floor. We fail to communicate simple prayers. Desires, hopes, fears, love, appreciation, anger.... become stuffed and stifled. With that much presure, no diamonds of truth are formed. Nothing is more void than the silence that follows.

We come to points in our relationships, often when we are breaking points, that someone must say to us directly, and teach us again that what we say is valid and lifegiving. Today, we have to learn again to use our words.

A Slow Leak

I cried for the first time this morning. I knew it would call catch up with me, and the stress just became too terse. Like a slow leak, I cried. I needed there to be a vacuum where this overwhelming waiting has resided for months. I did not cry because of fear. Not from worry. I just missed my daughter. I missed her eyes half closing in a smile. I missed her cheeky, gasping laugh. I just missed the signs of life. Now, I must wait for these things to return; the minutes and hours leak slowly as well.

I met my daughter, February 5th. She was about two months old, and not even six pounds. She was born without an esophagus. Meeting her has been followed by months of juggling time, emotion, waiting, plans for the next step to make her normal, whole. Since August 12th, she has been on a vent after twelve hours of surgery. We anticipated the swolleness and days like today when nothing seems to change. I have learned more than I have ever wanted to know about blood gases, vent settings, third spacing, tissue layers, and central lines. If education fails, I can go to nursing school. (Except for that darn fear of another person's blood... and my lack of mathamatical inclination.)

I look out our glass door, and see other families walking back and forth. I can see from the slowness in their step, and their supportive embrace that they are waiting for something different. They wait for life to end. Life of a their child, like a slow leak, to empty.

And I cry for different reasons. My own selfishness. Thankfulness. Grief for the other mother.