Wednesday, June 5, 2013

Battling Fear

As I write this, my husband is driving Joshua to the emergency room.  Josh has had a fever off and on for two days but this evening he started throwing up and could not keep his meds down.  Josh has a diabetes-like disorder (called panhypopituitarism) which necessitates that he takes a shot and many pills every day, throughout the day.  If he is not able to keep his pills down, he has to be taken to the hospital so that he can get them via an IV.  Thus, we are not allowed to ever be very far from a hospital.  No camping in the backwoods for our family... ever.

I am at home with my girls, with my cell phone charged and close, waiting for a call.  How am I doing?  I realize as I mechanically do some laundry that I am filled with fear.  Dark scenarios of something really bad happening are shooting through my adrenaline filled brain.  I think about how if he dies tonight, my last interaction with my son will be him explosively throwing up all over me.  Was I compassionate to him in the moment?  Was I mean because I was stressed?  I can't remember.

Why do I go there?  Why does a bout of mere fever and vomiting lead me to thoughts about my son's death?

One reason is that when Josh was first diagnosed with Septo-Optic Dysplasia, his primary diagnosis, we asked a service provider if this was something that could threaten his life.

"Has anyone died of this?" we asked.

The woman was taken aback by our question but answered us honestly. She had recently heard of another young child with Septo-Optic Dysplasia who had passed away because she had the flu, was not able to keep her meds down, and had an adrenal crisis.  It's hard to forget stories like that.

I think that the other reason that I am filled with fear is that all parents struggle with fear about our children.  They are these phenomenally precious, wonderful gifts in our lives and we are responsible to keep them alive (and then some).  Something terrible happening to our children is unfathomable but it seems like there is a role for fear in that it helps us to wake up and forces us to give our best to protecting them.

Yet, no parent can live in fear for the long term.  It makes us crazy, cranky and gives us ulcers.  Ultimately, I think it keeps us from being good parents.  At some point, we have to put fear to bed and snuggle up with trust.  What do we put our trust in?  Right now I am trying really hard to put my trust in a God who loves me and loves my son more than I could possibly imagine.  Secondly, I'm choosing to trust that my husband will take the right steps in advocating for Josh and explaining his really complicated diagnoses to the staff at the ER.  Finally, I am trusting that being a good parent does not depend on my being constantly anxious, perfect and vigilant but in doing the best job that I can do according to who God has made me to be.

Well, okay.  Those are my thoughts for this moment.  Now, I'm going to go back to the mountain of laundry.


  1. I wish I had a good answer for you. I had to sign the papers to put my son Daniel on ECMO (heart-lung machine) after he coded two years ago during a three week hospital stay during which he spent a week and a half in the PICU. It was the hardest thing I've ever had to do and the longest four hours of my life while they waited for the surgeon and then deliberated about whether or not to do it when he improved with just a few ventilator tweaks.

    I think doing laundry is probably your best bet. Folding clothes can use up some of the nervous energy.

  2. Hope he is better today Susan

  3. Thinking of you with love.

  4. Josh returned from his trip to the hospital about 2 hours ago. Just now he emerged from his room and declared, "Want School House Rock video". Now he's sitting up comfortably for the first time in three days laughing and clapping because his old trusty video that he's seen about a billion times is making him happy.

  5. I know that feeling, the 'what-if-this-is-it?' feeling. Anna isn't quite so medically fragile, but we've had some moments. I think of you and your family often, though we haven't been in touch. I am glad that you are 'out there', and that we're not alone. prayers for you all.