Our son was 8 years old when we faced an impossible, and painful, decision.

He was born with multiple medical issues, including glaucoma, and as a result was legally blind and hearing-impaired. He had already endured a dozen surgeries on his spine and eyes, including a corneal transplant. The first transplant failed. A second was performed on a Friday, and by the following Monday, the pain had commenced. His surgeon said it was probably normal post-op pain, but our son never had post-op pain after any eye surgery, and definitely not after his first corneal transplant. We knew something was wrong.

He was admitted to the hospital twice over the course of that week to manage the excruciating pain that not even morphine was helping. After the surgery, he had suffered a massive hemorrhage in the back of his eye. The hope was that the bleed would reabsorb and he could carry on with his life.

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Sadly, that never happened.

By Saturday morning we had reached the end of the line, and we knew the eye had to go. We had exhausted every avenue to save it, but we couldn’t in good conscience let him keep suffering.

A surgical team was assembled, and I sat next to him in the operating room as they put him to sleep, just as I had so many times before. This time, though, the surgery was devastating, not hopeful. I looked one more time at his precious eye, then burst into tears in the hallway. My only comfort was that we had no choice. He needed us to do this for him.

He had no idea what had happened, and we broke the news to him several days after the surgery. As he sat in our bed I asked, “Do you know what they did in the surgery the other day?”

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“No, just another eye surgery?” he said.

“Well, do you remember how your eye was so painful and it was so sick?” I said. He nodded and I said, “Your eye was so sick that it had to come out, and I’m so sorry. We did everything we could, and we love you so much. There are lots of people to help us through this.”

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He sat there in silence, processing what I said, and asked: “So mommy, my eye is gone? I’ll have a fake eye?”

“Yes, your eye is gone, and you will have a fake eye,” I said.

He was silent again as I reassured him the best I could. He then turned to me and said, “Mommy, I want to go on my swing.”

I was taken aback by his reaction. It was frigid outside, with about three feet of snow on the ground, and we had to climb a hill to get to the swing, but we were going to do it. He was weak but able to sit unassisted, so I bundled him up and we trudged up to the snow-covered swing, where I pushed him for a long time. It was his way of feeling normal in an abnormal situation.

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Several months later, it was time for him to be fitted for a prosthetic lens to cover the socket. As I sat in the waiting room with him, and he clutched his favorite stuffed dog, I knew that everyone sitting there had either lost an eye or was accompanying someone who had.

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Most of them were elderly, but one man in his late 40s sat there alone. He tried to make eye contact with me, then leaned in and asked, “Was it cancer?”

“Cancer?” I asked.

“Your son, did cancer take his eye?” he said.

“No, complications from a corneal transplant. You?” I said. He told me that he lost his eye in an industrial accident at work, but it’s what he said next that changed everything.

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“You know, my wife and friends kept telling me how I should feel about this, that I must be devastated, that I needed counseling, but you know what? It made things worse for me,” he said. “I didn’t need counseling. Don’t force your son to feel a certain way about losing his eye. Let him decide how he feels about it.”

I thanked him profusely. Many people, including me, had projected onto our son how he should or must feel. But he went on with life as normal. Because he was a child, I wanted him to talk to someone about it. But he refused, choosing to talk only to me and my husband. As horrible as it was for him to lose his eye, it ended his almost-daily visits to the city for appointments, and freed him to be a normal kid focused on friends and school, rather than the status of his eye. I lost sleep wondering what he needed, but what he needed most was normalcy and to not be placed under a microscope.

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That man in the waiting room was right.

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Our son is 15 now, and we were looking at old home videos the other night when he said, “Wow, I can really see that eye looked messed up, that white spot on it.”

“Yes, can you see now? You couldn’t see out of it, just light and dark,” I said.

He has faced so much in his life, but he wants to handle it in his own way. He doesn’t feel the way I feel about it, and I need to respect that. He’s forward-focused and has taught me to be the same.

Laura Richards is a freelance writer based in Massachusetts. She writes about parenting, lifestyle, health and travel. Find her on Twitter @ModMothering.

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