Faith, Hope and Poo

Faith: My faith has changed. I obviously didn’t stop believing in God all together as is evidenced by my anger with him. I never stopped believing that God was  strong, powerful and  mind boggling–that  he created my daughter (in a manner of speaking)  and knew she would have AMC.  But I stopped believing he  cared. After these days of one bad event after another… Watching  Laelia attempt to do something she can’t… Stares of strangers… Uncaring professionals… I wonder if  God is  all that loving or kind. So I tend to  nod when people talk of God as being just or pure or powerful, but emotionally tune out any “eye on the sparrow” talk.  And just as logic and emotion can be at odds,  emotion and truth can be at odds. But watching God’s  behavior affects what I think about his character. Maybe recently I should say his lack of behavior. Although that’s not entirely true. Sometimes I feel he’s there for me and sometimes he’s not. His whim I suppose. Or my filter.  I don’t know how to succinctly explain what I mean. All I know is that my daughter is a joy and all the things I want, I want for her. If God cares for her, why not help her? I mean Jesus didn’t have AMC! .. Of course, as I was reminded recently, humanity was  a bigger disability.

Hope: I had no idea how completely hope drives out depression. I also had no idea how much power I had given doctors to crush that hope. After Friday’s doctor’s visit, I gave up on my daughter’s future for 10 solid  hours.  It was scary.  I took the doctor’s view of  having a stump with four dead branches for a daughter–a dark thought for sure. Hope came back after one email from another mom.  (Don’t believe them!)  A few days later two moms, Sue and Ginny,  from  a church I used to attend in northern California, GCBC, got on a plane just to be with our family and gave me more hope. (Don’t limit her!)  I realized I need this hope more than oxygen. It’s the only thing that keeps me going.  

Poo: I love my daughter and I adore my husband. I don’t know what I would do without either one of them. It’s hard to believe God is uncaring when I see my husband’s goodness or my daughter’s beauty. Right now I watch  Laelie grin through a diaper change and remember the first weeks when those were  painful for her because of bent and twisted legs and feet.  Sometimes I think the greatest of these joys is being able to poo. :)    

One Response to “Faith, Hope and Poo”

  1. Beth says:

    Hey sweetie!

    Glad to hear that you haven’t lost your hope. My husband is close friends with a man who has Lupus. When he was first diagnosed, the doctor told him that he would only live for a max of 15 years. And he was just interviewed for a documentary about Lupus because he has lived 25 years since that first “death prognosis”.

    I love knowing someone in person who has beaten the odds. Someone whose hope and determination helped him surpass the odds. It gives me hope whenever life (or people) seem to pass out doomsday scenarios, either for myself or people I care about. And I care about you and your family very much.

    I am proud of you for having the strength to reach out and grab your hope back. Its easy to give in to the despair-you would have every right to let it overwhelm you…but to hold on to your hope takes real strength, which you and Charley obviously have, even though you may not feel like it. However dark the days ahead may get, don’t ever let them take away your hope. Because you just never know…..

    Big hugs,
    Beth :)

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