Monday, February 6, 2017

Thoughts, Words, and the Color Grey

The plans are made.  Plane tickets bought, rooms booked, procedures and appointments scheduled.  We leave for Boston February 26.  Jacob will have surgery on March 1, and if he recovers well, we will return March 5. I will give more details later, but for now, I’m just too tired.  I’ve sat down to write several times.  Somehow the words won’t come.  I know it helps me to write.  A therapy of sorts.  I know keeping things in doesn’t help.  Still the words haven’t come. 
I like noise these days.  With 4 kids, most of the time it’s not a problem, but if I am alone, I keep music on or the TV, anything to drown out the silence.  The noise in my head gets too loud if it’s too quiet.  I try not to think too much, delve too deep.  I’m afraid of what I may find.  I’ve thought many times over the past two years, about how good I’m doing with all of this with Jake.  But in the back of my mind, doubts reign.  Am I doing good because I’m truly doing good, or is it just because he is doing good?  Am I ok only because he is?  I guess the doubts were founded, because as soon as it came creeping back, I began to feel myself falling.  Not like last time, or maybe so; maybe now I’m just better at hiding.  Hiding from my own thoughts, hiding my anger and fear and grief from everyone. 
I feel guilty.  What right do I have to question this?  What arrogance to see and care for the suffering children of others all around me, and feel outrage when it is my own.  I see so many walk these dark roads with such grace, such unwavering faith.  And here I am, drowning under the weight of a burden no one can see.  I look at my son, and the perfection that he is.  I feel no right to struggle with this.  And I’ve said before, I am thankful, truly.  I have seen firsthand how fortunate we are for the health that he has.  The thing is, though, I know there is no levels of health that are acceptable for our children, other than the fullest level of health.  It doesn’t make it ok that “it could be worse.”  And most do not understand that he is great…until he is not.  And the devastation of what the “not” could mean.  I do know that I shouldn’t make myself crazy over what if’s.  And that I could worry and stress my entire life over possibilities that may never come.  The unpredictable nature of his condition is truly the worst thing for me.  My make a plan, take charge, and make it happen self is completely derailed by this “wait and see” diagnosis.  
I pray for Today’s Miracle, and sometimes I wonder if I truly believe we will get it.  I am always preparing myself for what may happen, as if it will somehow soften the blow.  I blame myself, as if my unbelief could be why we wouldn’t get a miracle for Jake today.  Again, such arrogance, as if the health of my son revolves around life lessons for me, though the mere thought of that is absolutely infuriating.  I battled the anger last time, with God mostly, to be honest.  The perceived injustice, and the suffering our son would and has endured.  It does creep back at times.  I broke down in our small group a couple weeks ago.  We were talking about being thankful in all things and for all things.  Before I knew it, tears were running down my face.  I couldn’t stop them, and finally shared my brokenness.  Romans 8:28 burns off the pages of my Bible.  I cling to Romans 8:26 instead, the promise of intercession even when we’re weak and don’t know what to pray for or can’t pray as we should.  Romans 8:28 is too heavy.  What good is there in this?  I think I could see good in my own pain, the personal refinement it would bring, how much I could help others.  But it’s hard to see the good in the suffering of my child.  What is this worth?  And again, any personal refinement just makes me hate myself, if that could even be the larger meaning.  I battle anger with myself these days.  I see myself struggling, and hear Dave Matthews’ words, “She would change everything about her, using colors bold and bright, but all the colors mix together, into grey.”  I would.  Make myself stronger, with more faith, less worry.  I keep trying, but the colors just keep mixing together…into grey. 



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