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.