Permanent flair

Level 11 turns out to be really level 5 in Jacob’s world. 

We had a hearing test.

It wasn’t great.

Just one of the “sides” of chemo. Permanent hearing loss. You know “e” word. He has significant hearing loss in both ears which is permanent.

It was the audiologist’s third day at Sloan. She was previously at Mt. Sinai. She said she is still getting used to the change. I asked what is so different, she said “you, the parent. Still struggling to adjust myself to the parents here. Every meeting is like a shock for me.”

She explained that previously when she would give a parent the news that their child has suffered permanent hearing loss, there are tears, there are crazy questions, there is even denial. She told me that some parents don’t understand and are beyond hysterical that their child will be “different.” Some refuse to get hearing aids. But at Sloan the parental response is just procedural questions. Parents just ask what is next. They don’t cry. They don’t question. They have been through trauma. This is not life or death. This doesn’t matter.

And she’s right. 

I didn’t question. I didn’t cry. I just asked when can we get him fitted. 

However, I did pause when she said permanent. I paused because every day Jacob will be reminded of this disease. When he one day walks away, there will be a lasting artifact. His every day will change.

But I’m changing my perspective. I’m going glass half full. Maybe those aids will be his tattoo. His permanent flair. A flair that marks triumph. A flair that does remember yes-ter-day, but in the light of today. In the light that he did it. He survived. 

Now we got to get this kid in remission so he can wear these aids with pride.

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