Wednesday, May 9, 2012

It's Cold Outside

It’s cold outside. It’s raining outside. And we’re hurting inside. We’re fractured and cracked, broken and beaten, and every step is like walking on the glass that was our armor. A beam of light is flashed outside. While a flash of light beams inside us, on the pain that seems to keep us dry. There’s a game on TV, two guys care but cannot speak, But who really cares about the Heat. This is NIH.


Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.

Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.

Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.

Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.

5 comments:

Tengadave said...

Paul, Liz, Morgan, and Evan, I am touched beyond words and have been missing you all since you left the area. Know that our Lord loves you all and has a plan already set in motion. Life is rarely what we want or expect of it, but know that you are loved. I am so tempted to make the journey for Miracle 2012 (and may yet) but will definitely participate in some fashion. While heart-wrenching, this blog is wonderful and a must-read! Thank you! Prayers for all :-*

Anonymous said...

"takes authority of the sickness and commands the sick persons body to be healed "on earth as it is in heaven"
This is how we are praying for Evan...
Josh and Michelle gardner

Heather said...

I tried unsuccessfully to comment from my mobile phone. Just wanted to tell you all that a great web of love and support and concern radiates from Evan and extends around the globe. We are sorry not to be able to attend Miracle 2012 but would like to bring something from France to Westlake for you - whatever exoticism strikes your fancy. We hope the appetite returns soon and correlated with better news today. Best wishes to the whole family.

Sharen said...

Praying to God, pleading with God, praying to God, pleading with God, pleading with God, pleading with God.....

Lisa Bale said...

A heart-felt flood of tears runs down my face, as I have read about the emotional and physical jarring that you have all gone through. My soul cries out to our merciful God to calm all your fears and uplift you through His grace. It is beyond my imagining, the road you have traveled and continue to travel. I am tortured to think that careless, self-centered, egotistical, carefree people roam about this planet, stealing every earthy thing imaginable for their own gain, without thought or concern that beautiful, loving and selfless people are living a life of hell. On the other hand, I am refreshed to know that their others who would willing travel to the ends of the earth and heaven to relieve Evan of this plight. I pray God would share His miracle of healing for Evan and for your family. That through you, God's light of hope and salvation might shine for all to see.