Thanksgiving 1993

The day before Thanksgiving we had a follow up for S with his ENT and one for B at the neurologist. I took B first and the neuro measured his head. He did not like what he’d found. He sent us immediately over for the CT scan and MRI to check on the craniosynostosis. This time, he was so convinced that something would need to be done that he went over the surgery with me.

The removal of his skull, and the bones re shapen. The risks are what normally come with surgery. I also remember something about blindness and mental retardation, but can’t honestly say what they were. I was numb with fear at that point.

We rushed to the hospital to get the films done before I had to take S to the ENT. We got them done and B was allowed to climb up into the helicopter when we were coming out. He was on top of the world. I was sinking in fear. By this time, I’d known that this was a possibility, but so much time had gone on, I’d come to believe this moment would never come.

I dropped B off with his dad and I took S to the ENT. It was a routine follow up and I expected to have the hearing test and be in and out in an hour. After the morning I’d had, I was more than ready to get on with the holiday.

We went in for the hearing test and it was taking longer than normal. The lady performing the test was familiar with me, we tested his hearing every 3 months, but a year after his last set of tubes, they said we could go to every 6 months. This was his first hearing test since that extension. The audiologist called me over and repeated a few of the sounds. S was not hearing a certain level.

Devastated, I wasn’t sure how much more I could take. I knew that of all the things that parents could face, *my* child having a hearing loss was probably low on the severity. I knew sign, I was fluent in it. I could help him and anyone in his life. But nothing logical could get through. My child would suffer … and have more difficulties than what others have. I didn’t know how to fix this.

The doctor came in to discuss the testing. He was sorry but assured us that he could still hear and a 30% loss was not insurmountable. This, I knew, but it all seemed like too much at the time. He looked in S’s ears and I saw him change colors in front of me. He went white. He looked up at me and asked me to wait a minute. He left the room and came back with his partner and a special light. They both looked in his ear.

When they were done, they had an assistant come get S to go play. As they talked to me, I felt like the world had opened up and was going to swallow me. Part of me wished it would.

They were seeing what looked like a cholesteotoma. An insidious brain tumor that spiders its way into the brain. It causes brain damage if not caught in time and sometimes the surgery to get it out causes brain damage. They described to me the process of removing the tumor. It would require going through the skull behind the ear … that was all I heard … that and they were pretty sure that this was what they were seeing. So they wanted to cover the procedure with me. If he did in fact have a cholesteotoma they would do the surgery the next week.

They sent us to the hospital for an MRI and then home to wait the holiday weekend for the results.



I came home from the doctor’s office and was just numb. I called my mom and asked her to babysit and D and I went out for dinner. I explained to him the events of the day. He was as heart broken as I was, and was unable to be any kind of support for me. We were both broken and bruised and feeling helpless.

After dinner we went to the coffee shop that we frequented. A friend, T, was there. I told her what was going on. She reached across the table and held my hand and said “we’ll get through this weekend”

That weekend she called me every day and I met her up at the coffee shop …sometimes by myself, sometimes with the boys, while we waited, together for the results. We talked about the what ifs and we talked about politics. We talked about whatever came up …

Thanksgiving, as usual ended up with S having strep throat and B getting bronchitis. Our T day was spent in the ER with 2 sick boys. I only have a slight memory of that day. I know that strep and bronchitis suddenly seemed mild comparatively. Everything we’d dealt with, to date, seemed mild in comparison.

After the weekend of sitting in the coffee shop with T and just trying to function enough to keep the boys clothed and fed, Monday finally came.

We took S first to see the ENT and the results were in. It wasn’t a cholesteotoma, it was severe scar tissue. This meant that his hearing was permanently effected, but there was no reason to believe that he would experience any more loss. The level that he had would probably not have any real effect on his life. With the scar tissue, if it is on a nerve, he could be sensitive to loud sounds. (he was and is)

Greatly relieved but not feeling like we were out of the water yet, I took him out to McDonalds for lunch and then took him home. Then went to pick up B. When I got B, I took HIM to lunch at McDonalds before going to the doctor. Both boys had been completely oblivious to the world crashing down around them. I watched him play and had to fight the tears as I wondered if he’d get off as easily as S.

I got to the neurologists office and waiting for us was a neuro surgeon the neurologist had asked to come and consult. The neuro felt the surgery was warranted. The neurosurgeon felt that given his age of almost 2, it was not. If he was even 3 months younger, he’d be as insistent as the neuro. The lack of pressure on the brain made the neurosurgeon inclined to wait 3 more months. The neurologist acquiesced to the neurosurgeon.

I walked out of there with the weight of the world off my shoulders. Feeling like we dodged a bullet once again, I hugged my son even though he couldn’t stand to be hugged. He tolerated it that time. Maybe he was able to sense that this time, it was for mom and therefore it was tolerable.