Friday, March 11, 2016

When the Waves Keep Coming

The waves keep rolling over me in crashing torrents.  I shake, I cry, I feel panic wash through me in ways that are new and frightening.  This life, this unexpected life that we've been given has given us opportunities to trust God in ways we never imagined--because we've hit places in which only God can reach us like never before, too.

Last week I was out with the boys, and we had an event that proved to be my emotional undoing.  We were, once again, at the local thrift store to search out free books between school and therapy.  The boys rushed to the toy and book section.  This is also always feeding time for Pip.  After assuring him that he would get to look at books, too, in just a minute, I lifted his shirt to connect his tube to his pump.  However, upon lifting his shirt, what I saw instead of his button, was simply a puckered hole in his abdomen where his button should have been.  Feelings of panic filled me so quickly that instinct took over.

These two pictures show what I should have seen upon lifting Pip's shirt--both without (above), and with (below) the dressing.

You see, it typically takes less than an hour for a G tube stoma to close enough to require going back into surgery to replace it.  We've had the tube fall out once before.  That time, when it was noticed we happened to be at the hospital.  It took the GI many, many minutes of sweat and uncertainty to get his tube back in.  Pip screamed and screamed in pain while I held his writhing little body down and cried and whispered what comfort I could in his ear.  When the tube finally went back in the doctor let out a huge sigh and said "wow.  That was close."  It isn't something you forget.

So, when I lifted Pip's shirt, and rather than seeing his button, I saw this, I panicked.

It had been two hours since I'd last fed him, and I had no idea when in those last two hours it had come out.  For all I knew, it was already too late.  So there, in the middle of the thrift store, I said "Oh God, no.  Boys!  We have to go to the hospital. Now!"

And even though they were in front of a display of toys and books they're allowed to play with, the boys moved--fast.

Once we got to the car I realized that I had two emergency kits--one in the diaper bag and one in the car.  I emptied both, saying "please, God, help!" all the while.  During this time one of the boys asked me why I was saying that.  I said something to the effect of "this is what praying sounds like when you really, really need God to help you!"

I found the Foley catheter, the one that the doctor tells you he hopes you'll never need, some lubricant, tore both open, lubed it up, kept crying (literally) to God, and it went in!  His stoma was open!

At that point what was in his stomach started pouring out the foley catheter all over the seat of the van and my clothes.  I found a diaper that was in the emergency kit and wrapped it around the end of the catheter to at least soak up the flow.  Then I picked up my phone, called Ryan at work, and cried.   He said he would leave work and meet me at home.  

The aftermath of having replaced Pip's tube on the living room floor.

Once home I was able to replace his button with a new one, and physically, all was well.

Emotionally, however, is a whole different story, and one I'm still sorting out.  Things have been stacking up for awhile.  I've been trying to get developmental disability services set up for both Abel and Pip.  This is the sort of process that makes you realize that getting support services is more theory than reality in many, many ways.  The red tape, bureaucracy, classes to be taken, and stacks and stacks of paperwork to complete are unreal.  And I broke after this incident.  I became a jittery, crying, shaking, illogical mess.

What is hardest for me to process is the fact that my faith is not gone.  It is very much here, and it is real.  God is here, and HE is real.  However, I always imagined, reading others' stories, that knowing His presence would feel somehow--I don't know, empowering, maybe?  But I am broken.  I'm so far beyond a place in which I can handle this.  The same week in which this happened, Mercy was home from school one day with her Cyclic Vomiting Syndrome, and in our bed all night with it another.  And Abel is clever and witty and hilarious, but autism is also exhausting.  And these things don't rest.  Mercy can't just stop feeling like throwing up, and Abel can't control his neurological function any more than Pip can make his white matter regenerate.

We live in a fallen world.  And I am fallen, and falling.

There's beauty in the fact that our children get to see moments in which we are literally, literally, crying out to God, and then they see him answer.  That is not lost on us.  But just because beauty rises from ashes doesn't mean that the ashes aren't there with the accompanying burns and scars, or that when the waves come we don't inhale some water, enough water to cause some damage, before the storm subsides and the sunset paints glorious color on the horizon.