How Julia Died

Anxiety…such a pervasive difficulty in our human experience.  I myself have experienced more anxiety in my life than most might admit to.  I know what a panic attack feels like, and I also know transcendent peace.  In fact, I believe I told several people that right before Julia’s surgery that I felt a “peace that surpasses understanding” (Philippians 4:7).  It certainly surpassed my own understanding.

But prior to Julia’s surgery, I could not have claimed that.  In the early months of Julia’s life, I worried…a lot.  There was so much to think about.  Life had been open and free, and now it was constrained by what Julia would need.  It was scary to think about all that we would need to do, about all of our dreams and goals that would be changed and given up.  Probably one of my biggest regrets now is that I spent so much mental time worrying about the future.

It is difficult now to be anxious about anything.  Nothing really seems important enough to worry about, once your daughter has died.  The worst possible thing has happened to you, and much to my surprise, I am still here!  I truly wake up some mornings semi-surprised that I have not died of a broken heart.  Thankfully, those days are fewer now.

During Julia's life, we spent an unbelievable amount of energy worrying about germs.  We had to.  We had hand sanitizer on every level of the house, we gulped Airborne chewables like candy, and we dosed Natalie on immunity-boosting supplements.  We enforced hand-washing rules; our hands were cracked and bleeding from washing them so much.  Julia never went anywhere, other than an occasional outdoor outing when the weather was good.  Natalie too was confined, as toddlers are such little germ magnets.  We attempted to disguise our anxiety when the rare visitor did come to our house, as we were so grateful for the support of friends and family.  When I would return from a solo outing, I would scrub my hands, sometimes multiple times. 

And still, despite all of this effort and anxiety, we caught mild colds that Julia in turn experienced.  She tested positive for rhinovirus (a common cold) at both scheduled surgery dates, but the second time, it was a mild enough version that the doctors felt confident that it would not affect her during surgery.

So when she died, I immediately blamed myself.  I had not kept her well; I had not protected her enough.  I had not left the house, literally, during the two weeks before her surgery, but I still felt that I should have known she was not well enough for the surgery.  How could I have failed my daughter in such an enormous way?  I had been charged with her care, and yet I had not held her back from surgery despite her having a mild cold.

This was how I felt for about 6 weeks after Julia’s death.  The weight of this began to subside slowly, but it was still there.  Encouragements from various friends helped me to know I wasn’t thinking logically, but I was “stuck.”  And, having the upcoming autopsy meeting didn’t help. 

I was afraid that the doctors would tell us, on February 4, that the rhinovirus killed her.  Or that a nurse had made a mistake (which I had preemtively found ways to blame myself for).  As the meeting neared, Taylor and I were a mess.  When we arrived at Nationwide Children’s Hospital that day, we were frozen in the car for about 15 minutes.  We knew we should pray, so we gave that a feeble try: “Dear Lord,” I prayed.  “Please help me not to throw up.  And other things.  Amen.”  (I’m serious!  That’s all I could muster.)

Do you know what we learned at that meeting?  NOTHING. 

What would they have done differently?  NOTHING.

Guess what her autopsy showed?  NOTHING.

Our doctors have no idea why Julia died.  They were nearly as upset as we were about her death, because there is no rational explanation for why she died. 

What’s more – she was negative for rhinovirus.  She did not have a cold at the time of surgery.  (My jaw hit the floor when they told us this.)

Julia has taught us an extremely uncomfortable, difficult truth.  The truth is that even when you do everything you can do, we are not in control.  You can move to another state in order to get the best medical care for your daughter, you can love strongly and deeply, you can advocate for the best care you can get, you can quarantine your family, you can follow all medical instructions perfectly – and you are still not in control. 

I have often been counseled not to worry about things because the worst is so unlikely to happen.   With great sadness, I share that that was not our outcome.  Against all odds, the worst did occur…and yet, in an unlikely paradox, that has freed me from many other anxieties.  My counsel to myself is now, "Don't worry.  Terrible things happen in this life, but nothing can separate us from our loving God."

Safe with her earthly father before her surgery.

 A dear friend wrote to me,

“God has taken what is misjudged by the world to prove His great love. A life that would be thrown away by some, God kept close to Himself, close to heaven because it is so precious to Him.”

And that, dear friends, is why Julia died.