12/27/13

Love is as astonishing as the failure

It is astonishing that months of planning, oodles of money, years of expertise, and months of patience, could be wasted in an explosive infection. The surgery was a disastrous failure. The surgery itself went so well, and everything looked so promising. But the stitches ripped through, and let bacteria-laden saliva seep into the chest cavity, causing a life-threatening infection.
There is, truly, no silver lining this time. It was a failure, and Eloise is suffering because of it. It is no one's fault; everyone of us involved tried our very, very best, but it didn't matter. It looks like we are going to have to abandon the esophagus all together, and in a year try to create a new one with bowel tissue. It is, quite literally, our last option. I have no idea how long Eloise will still have to live in the hospital, and how long I will have to travel sixty miles to see her.

I hope the hardest thing I have to do in life is watch my beloved little girl struggle for life, and suffer great amounts of pain. On Christmas day, we were perilously close to losing her. She is still fighting. She has been administered the strongest and best antibiotics the tweny-first century has created. I am working with teams of people daily, trying to make the best decisions for her health.
Today is the first day in four that I've been home at all, and as lovely as it is to sleep on my own bed, I have a constant flutter of anxiety over what is happening with Eloise. Its like a trapped hummingbird in my ribcage. There is no doubt in my mind that she does better when I am with her to take care of her. But it is literally impossible to be there all the time. Not to mention how much I miss my girls at home.

I am surprised at how much this experience has changed me. I won't ever be the same, and in some ways not for the better. I still believe in God, even a God who lets children suffer, even a God who lets my child suffer. But I can't say my faith has been strengthened.
I cannot tolerate being consoled, and kinda just want to be left alone. No one can fix anything, and its hard for me to discuss what's going on again and again (and again). Nevertheless, I have felt incredibly loved by those around me - those who have come to Primary's to see me and Eloise, those who have stopped by our house, and those who have sent love from afar. I can feel love from Heavenly Father. Love is as astonishing as the failure.

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