For much of Clara’s life my husband and I lived with fear.

Not a giant, constantly-at-the-front-of-your-mind fear. But a quieter, more subtle murmuring of fear that would bubble to the surface every now and then, increasing in intensity as the date of yet another doctor’s appointment or procedure approached, then receding into the background as it passed without incident.

While we knew that Clara’s illness was progressive and life-limiting, we purposefully avoided going to the place of our darkest fears. Her doctors never committed to a prognosis. We were never told when to expect things to deteriorate. Or how long that deterioration might last. New treatments and therapies emerge regularly and there’s no way to know how a child might respond to them and whether a definitive cure might be right around the corner.

Since her death, we have repeatedly asked ourselves why we didn’t press for more information earlier on.

After doctors discovered that the first surgery hadn’t gone as well as they had hoped it would.

Why her second surgery was postponed when doing it earlier might have prevented long term damage to her heart and lungs.

Why a heart-lung transplant wasn’t considered before the kidney cancer appeared and made it impossible.

How the many ultrasounds she’d had over the years failed to notice the renal cell carcinoma that took over her kidney, burst and metastasized to her lungs.

No matter how many times we run the alternative scenarios through our minds, we know that all paths lead to the same outcome.

If her heart and lungs were healthy, the late stage of the kidney cancer may still have killed her. Kidney cancer caught earlier? Her weakened heart and lungs wouldn’t have tolerated either the surgery required to remove the kidney or the heart-toxic chemotherapy afterwards.

In either case, we would have had to share our fears about Clara’s future with her. We would have had to tell our beautiful, sensitive, joy-filled daughter that her illness would prevent her from living a long, full life. That she would never experience having children of her own. That her ability to get out and enjoy nature would be increasingly limited and that she would spend more and more of her time in bed, too tired to go to school and see her friends.

I thought that when she died the fear would die too. For after you’ve lost a child, what could there possibly be left to fear?

But the fear hasn’t gone. It’s just changed…

In the beautiful words of Joan Didion (from “Blue Nights”, 2011)

Go back into the blue.

I myself placed her ashes in the wall.

I myself saw the cathedral doors locked at six.

I know what it is I am now experiencing.

I know what the frailty is, I know what the fear is.

The fear is not for what is lost.

What is lost is already in the wall.

What is lost is already behind the locked doors.

The fear is for what is still to be lost.

You may see nothing still to be lost.

Yet there is no day in her life on which I do not see her.