Thursday, June 7, 2007

Faith, testing

What are you trying to tell me, God? I don't know what to do with all this. Do I let them do the best they can, knowing I've never had anything turn out right in what, a dozen surgeries? Something always gets screwed up with this severity of Ehlers-Danlos Syndrome. Do I say forget it and enough is enough. Is that ok.

I don't know. I don't know anything any more except I'm emotionally exhausted, too much so to feign bravery with these diseases. The kids get to bed and the quiet rushes in, a dark curtain of desperation envelops me. I have never felt so alone, nowhere to turn, and for the first time, no hope in a new day.


  1. Dear Keesha, I don't know why we have these wilderness times in our lives. We are not alone in facing these moments, as others have faced them before us. Moses wandered in the desert, David cried out in the wilderness, and Jesus hung on the cross in pain, bearing our sins, alone, for a time separtated from God.

    And so we have our own, Job times too, where nothing seems to happen right, where life and body just continually fall apart. Imagine how those in Babylon felt, in exhile, when they were told to make their homes there, apart from their beloved Jerusalem. Yet, God promised that he would not forget them. "For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope." Jerimah 29 10b - 11

    The docs at TCI have not given up on you. And believe me, I've been through a lot of surgeries myself (although I admit not as invasive as yours, 2 decompressions, 3 VP shunts, LP shunt removal, 4 revisions, optic nerve surgery..but no severe EDS impacts) and its hard thinking about one more possible trip to the operating room, and is it worth it to try one more time? Do I do this again?

    We have to keep hope. It is what we have to keep us living. I am keeping you in my prayers that you will have that hope. Lean on others for awhile, and let them be strong for you. That is strength too.

    Peace be with you,

    Betsy P, Erie PA (the dragonfly lady)

  2. I have been reading your blog, I am a fellow Chiarian ~ just started my journey in Sept 2006 with ACM, EDS, and TC ~ you have been through it all! I often feel the cloak of feeling totally alone ~ I have nowhere to turn but to God ~ I heard this song on the radio a couple of weeks ago and it rocked my world!
    Of course we are not alone. Press on ~ take one day at a time and pray that others will have faith from watching you and your faith during these dark times.

    Here's my blog if you are interested