Monday, November 12, 2012
Darkness into light
This is what God the LORD says-he who created the heavens and stretched them out, who spread out the earth and all that comes out of it, who gives breath to its people, and life to those who walk on it: "I, the LORD, have called you in righteousness; I will take hold of your hand. I will keep you and will make you to be a covenant for the people and a light for the Gentiles, to open eyes that are blind, to free captives from prison and to release from the dungeon those who sit in darkness . . . I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:5-7, 16
I'm in bed in my new room curled under my heated throw with my sweet dog companion adding an added burst of warmth on my feet. It's the second day of full sun in this place I now call home. I study it like a crazy person. From morning until afternoon I keep my camera close and try to learn the way the light changes as the great orb travels from east to west over our shelter. The freedom from darkness is like an IV bag of a magic drug I have desperately needed for well over a year now. As it courses through my veins I taste it and feel it first. I have to close my eyes because the brightness and the relief burns in the good way before the calm comes. I knew in my heart of hearts this would make me suddenly better; not well but oh so much better. Today my joints shout out all day long. My muscles twitch. I see black floaties as I type. The pressure in my head is moderate, but I can feel loose vertebrae in my lower cervical area and entire back slipping and pushing on the cord of life. My head goes numb. My fingers too. I know for sure there is something neurological going on, and this time I'm taking trying to ignore it will be short. My chest has been hurting more too. When my hypermobility is bad, the scary heart symptoms seem worse too and the stabbing takes my breath away. On a day like this in the basement I would have been stuck on an incessantly off key note of pain. Instead I am distracted here by the simplest sights and sounds I will never take for granted again. I am able to release some of my constant pain back into the space between the sun and the earth. My afflictions are eclipsed by this glory. His glory.
A stack of poetry books are beside me and my Bible. I am able to read again. I am able to pray something different here. I chew over His words. I can scarcely breathe when I see for sure the promises I screamed in doubt and fear to Him are being revealed clearly as true once more. They were always true, but it was such a stretch to keep believing for so long in the dark. I finally admit to myself it was at the lake house recovering from my brain surgery and cervical fusion I last experienced this close communion with God. It was almost a year ago now that I had this kind of peace and hope. For just a moment it causes me to question if my circumstances have been the foundation of my faith. He whispers comfort to me on another shaft of brightness. There is no need for deep theology in this cathedral He provided. It's simple. He rescued me. He delights in giving good things. He called me from darkness into light. He IS the light. Oh How He loves me.
Dan and I are suffering an intense gratitude there are no words for. We thought we had been the most thankful before. Somehow it was never as deep as this. Just around the corner of all this fulfilled hope and desire granted is the lie we shouldn't be allowed to have something this nice or peaceful or secure. We've seen too much on the other side. It's like survivior's guilt of the worst kind. We still wake from our homeless nightmares. We walk around this place in disbelief we made it here and choke on a strange dread it won't last when we should be tasting more fully the gift of today. Dan will say out of the blue, "STOP. Girls, we are really here! Look at us!" We cry at the silliest things. The fruits of the Spirit flourish here in the light too. We are almost startled at how much kinder and more patient we all are here. Good things will grow here. We can feel our hearts pushing out of the dormant place we waited in for so long reaching up through the cold dark earth to begin a shoot we know will really bloom.
A year ago I could not get out of bed. Literally. My brain stem was in such jeopardy I did not know if I would make it until my surgery scheduled for November 21st. People ask me if the operations were worth it. They see my continued pain and wonder. As I move through my days now there are a dozen simple tasks I can push through for myself or my family and friends I simply could not live before without the stabilization I was given. The reality of Ehlers Danlos and its progression and the need for further intervention cannot be dismissed. Every hour is full of trading even basic life for more pain and injury. I'm ever learning. My family is learning. We walk a balancing act of grabbing life and drawing back because the good hurts people like me. This home is so important to prolonging what is the inevitable. Every stair I don't have to climb is adding life to my knees and hips. Every breath of fresher air is making me less reactive to the world that sabatoges me without warning. Every particle of light is fighting mast cells and mold and the demon of depression . . .
It's Monday morning now, and it's been days since I began this post. We had a beautiful weekend together as a family. Our hearts are full. Our joy is real. Our peace is sure. Your love and prayers have carried us and our merciful God has given us so much more than enough. This week includes our first family counseling session tonight to continue the real work of heart healing from all we've endured and learn better ways to move forward and be the family God wants us to be. I think we are all a little scared and excited to start this dialogue. Tomorrow night Delaney will play her flute in her first band concert at her school. We will celebrate the loving place God has always provided for her to learn and grow and the gifts He's given her. Friday Dan will take more time off work and drive me to meet with the Cleveland Clinic pectus surgeon. We cautiously move forward with seeking treatment closer to home in the coming year.
Thank you for sharing in our excitement and praise as we settle in our new home. Thank you for indulging me as I share too much about what the light is like in this place. It is like I'm seeing for the first time. Everything is wonderful. Thank you for continuing to pray for us. Our Hope remains.
(I am quietly removing our "donate" button today. As I read my Bible this weekend I was reminded through the story of Bartimaeus how our "begging" has been one of the most humbling parts of this journey but also the way our God has tested our dependence on Him. Through your own stories I know it has also tested your faith as you have given sometimes more than you really could afford to. There is a point in the story in Luke where someone from the crowd shouts out to the blind man, "Be quiet, beggar!" There are some family and friends who have surely shouted this our way. Bartimaeus continues to cry out to Jesus to have mercy on him. He receives his physical sight that day and many who saw this miracle also believed and were made spiritually well. When I have focused on our material needs and the gifts and provision in my writing I hope you have always known it is to point to the Great Provider and how He faithfully gives all things to us. I pray it has pointed to Grace. We move forward not knowing how the next wave of our needs will be met but feel confident this place has more than served it purpose. We thank each of you for making such a difference in our lives. You have been God's hands to us. We are ever grateful.)
Posted by Monica Kaye at 10:05 AM