The first truly distinct feeling I had when Elli died, apart from the pain of being cut off from her, was guilt.

Is guilt.

For guilt has leeched onto me and threatens to suck my life out.

Elli died in our care, in our home. Caring for her was our responsibility that day –we had not delegated to the hospital staff or to a babysitter.

Yet, she slipped away unnoticed in the early morning hours, while I drifted in and out of sleep, wrestling unsuccessfully to master my body and start my day.

When we found her still in her bed, we did everything we could at that moment. But it was too late. She was already gone.

A seven-month wrestling match began that morning. I struggle daily with myself over what I did not do, what I did wrong, how I failed her at the most critical moment of her life.

Did we miss something the day before? Did I screw up her medicines somehow? Should I have given her that formula at 11pm the night before? Why didn’t I check her pulse and oxygen level? Was her color bad? Did I monitor her breathing enough? Did she need extra breathing treatments? Should we have left her alone that night? Had she cried out and I didn’t hear, or worse, sleepily ignored her? Should we have taken her to the hospital? Did decisions we made months prior set this in motion? Should we have had the tendon-lengthening surgery that resulted in such massive internal bleeding? Did a clot from that hematoma dislodge and give her a deadly stroke or pulmonary embolism? Why did we put her through that painful surgery and recovery when she only had a few more months to live anyway?

Then I wrestle back. She showed no alarming signs. She ate well at dinner. She was resting peacefully when I checked on her late the night before. When I double-checked all the drug interactions of all the medicines she received, nothing showed up. Her eyes were closed when we found her, so we know that she was asleep when she died, not awake. We made the best decisions we knew to earlier in the year. We didn’t know how short her time with us was. If she had been in the hospital, what sort of painful interventions might we have tried? What sort of agonizing decisions might we have been forced to make? This was clearly out of our control.

In part, I set myself up for this. From the first second we learned she was so ill, our precious 3-day-old first child, I determined to be with her when she died. She would not be surrounded by strangers. She would not lay on a cold steel table alone when she breathed her last. I was there when she was conceived, I was there when she was born, I would be there when she died.

As she grew and her health conditions became more and more complex, I reasoned that she would die of illness… or in surgery. Either way, we would know it might be coming. We would be there.

But God did not allow that. God did not grant me that deep desire of my heart. I tell myself that God knew what was best for Elli and for me, and that perhaps the agony of that moment would have been more than we could bear.

But the agony of finding her gone forever without me is also great beyond words.

“How could this be the best way?” my heart begs. “I wanted to be there, to see her face, to say good-bye.”

It has been seven months, and I have yet to shake the guilt completely. Ever so slowly, my heart is accepting what my mind is trying to say: She is gone. And it is not my fault.