I shall know why, when time is over,
And I have ceased to wonder why;
Christ will explain each separate anguish
And I, for wonder at his woe,
I shall forget the drop of anguish,
That scalds me now, that scalds me now.
~ from Emily Dickinson's Time & Eternity, 1926 ~
And I have ceased to wonder why;
Christ will explain each separate anguish
And I, for wonder at his woe,
I shall forget the drop of anguish,
That scalds me now, that scalds me now.
~ from Emily Dickinson's Time & Eternity, 1926 ~
It was a golden, crisp autumn afternoon: October 8th, the last day I remember Amelia healthy in the recent past. We went to the park to play Pooh sticks off the bridge I used to walk as a child. Today has been a tough day. I think the stress is starting to hit home a bit. I feel like I am spinning wheels when I am doing anything other than tending to, absorbing, or cuddling my children - any of the four of them. And unfortunately, I can't have all four together in one room due to the unknown origin of Amelia's infection (she is in droplet isolation). That means wherever I am, I am not sure if that is where I am supposed to be. When I am with the "home" group of kids - Katy, Rosy & Cal - I feel like I should be at the hospital, and when I am at the hospital, I feel like I should be home. And I won't even mention the actual, real, physical home...abandoned until who knows when! I am thanking God already for the group of friends who is going to clean it tomorrow. I can only imagine how it smells after nearly a week sitting vacant, abandoned under duress with laundry in piles, diapers still in pails, bathrooms uncleaned, and garbage fermenting in the trash cans. Wait - perhaps I should quit describing it until my team has had a chance to go clean it - I don't want to scare them off!! What friends.
Regardless, here I sit. Surrounded by the familiar but nevertheless disturbing cacophony of the hospital. Being a nurse is a distinct disadvantage for me in this environment: I trained myself all too well to hear every code alarm, every urgent page, every IV pump beep, every peep from an unhappy baby in a distant room, every unexpected closing of a room door, every crash, bump, and thump. That means I spend my nights virtually sleepless, and my days permanently on edge. If only I could just go out there and work, I'm pretty sure I would feel much better! As it stands, I'm not even allowed to touch my kid's IV, or her beeping alarms, or the dirty linens. I even get an occasional odd look when I empty the commode, and definitely when I weigh and record a wet diaper. Apparently they don't get too many parent/nurse combos up here.
As I prayed, read, and caught up on the world at my computer tonight, these images came to mind. The fallen leaves frozen in the frame, the stream rushing by without regard. I am crystallized at the bottom of the torrent, plastered to the cold rocks of circumstance, clinging to a Rock that promises He is greater than I. Life, death, disease, the torrent that rushes by, pulling at my edges and threatening to send me spinning in a sea I am paralyzed by, terrified to navigate. I don't want to feel the tug. I want to remain plastered here, frozen in a moment of time, resisting this change. I want "today" to always be - Amy improving, keeping all the balls I'm juggling in the air. I fear the crashing down, I even fear resuming life at home with a new reality. I am just beginning to accept that "new reality" must now include a child with neurological deficits for an unknown period of time, possibly with an indwelling catheter, possibly trips to the hospital for I.V. drugs for weeks or months. I don't want to hear truth as it goes rushing past me, spewing from the lips of three teams of doctors, countless nurses, therapists, aides...I don't want to hear words like "damage might be permanent", or "at least it's a better mortality rate", or "improvement is probably temporary". On the other hand, I don't want to stand at the top of this new flight of stairs ignoring the fact that there are stairs in front of me. I know I can't do that type of crash, either. I want to fall slowly into this, one step down at a time. I can't fall down the entire flight at once because I refuse to hear scary details. So I'm trying to find the sweet spot between optimism and despair, anguish and hope. I'll never forget the feeling in my chest this morning when I woke up. A million times worse than waking up with cancer in your own neck is waking up with a child that might be dying. While I slept, Christ did, indeed, carry my burden. When I woke, it took about one full minute for me to remember what life was yesterday. And in that moment, the pressure built in my chest, all the way back up to that deep, penetrating, emotional pain of the heart that parents must endure as a consequence of the intensity of love.
So here they are, falling down beneath my cautious feet. Steps leading down into reality. I can't see the bottom yet, but I dare not close my eyes to avoid seeing it. I don't know these stairs. I've seen others walk them, but I don't know them with my own feet, know their height and depth with my own experience. So I have to keep my eyes open this time, and take the pain as it comes. Little doses or big.
I rise before dawn and cry for help; I have put my hope in your word. My eyes stay open through the watches of the night, that I may meditate on your promises. Hear my voice in accordance with your love; preserve Amelia's life, O Lord, according to your laws. Psalm 119:147-149
3 comments:
Take strength from my heart for you, Aaron and Amelia. You do not go these stairs alone. I only find comfort in the promise that in the twinkling of an eye we will have the answers we yearn for. And His justice will be swift for the one responsible. Wings wrapped around you.
Praying for you all....
Papa and I found relief only in eternity. Peace and joy intermingled with anguish. Watching for each morning's new mercies. For the "mundane" graces of light washing over a wall, the golden dance of a leaf. And choosing to perceive His continual Love and Presence despite the pain and deeps of love.
Your madly in Love, Mama
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