Wednesday, February 26, 2014

A Mother's Thoughts on a "needs surgery" email

How do I describe the thoughts and feelings I experienced when I got the email saying my daughter needs surgery?

What mom wants to hear that they're going to take the back of her child's skull off?  This isn't like putting tubes in ear drums.  This isn't like getting put to sleep for a non-invasive test.  This is big, to quote Barney Fife.  This is a procedure that's only done one place in the entire USA that we know of.  This is bloody.  This is painful.  This is messy.  This is expensive.

But this is her chance.  This is what I've fought for, since I first found out she had closed sutures at 15 months.  I didn't know this procedure exactly was what she needed, but I knew something needed to be done.

And incredibly, or maybe it's not so incredible given the last few months, when I got that email, I had peace.  Finally.  Despite probable out of network doctor.  Despite being in Texas, which is a long way away from Montana.  Despite facing balancing a newborn baby and a fresh post-op child through Denver airport, which wasn't the kindest to us car seat-toting parents. Despite having no idea how to handle caring for Turkey, who may very well be upset at seeing her big sister unable to jump on the bed.

It'll work out.  I really believe that, just like this crazy move to the middle-of-nowhere Montana, God has opened this door.  And He's closed the other ones.  I think He gave me a brain and a gut and when I no longer feel comfortable, it's time to move on.  In all honesty, finding this doctor, knowing to check for this particular brain malformation, was a fluke.  If I'd just trusted our first doctor, none of this would be happening.  And I think God's had His hand in this.  And His hand will see us through... through the insurance battles, the airports, the surgery, the recovery, the medical bills... It may not be pleasant.  Just like the move out here hasn't always been pleasant or easy.  Sometimes, you have to deal with grey shag carpet in the dining room and kitchen sinks that don't like to drain.  There may be challenges with what we face now.

But He is in control.  He is the Great Healer.  And He is going to take care of my child.  And while I need to believe that no matter what, I must admit, it's a great comfort to me to know the name of the person He's going to be using!

I'm taking her on a trip for her autism evaluation starting tomorrow.  Last week, I was dreading it.  I didn't know how I was going to get through it without crying.  Now, I no longer fear it.  They can say whatever they will.  I know the doctors say they can't promise anything, but I believe this surgery is going to give my child a chance to learn and develop like she did in December after her skull changed shape overnight.  There will be things to work on, but whatever label they want to stick on her is not the end of the world for me anymore.  I have hope.

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