He Speaks, Again

This is a guest post by a friend and fellow Cancer Mom.

By Kathleen Manning

Have you ever had a déjà vu moment? You know, a moment when you have a strong feeling that an event or an experience, that you are in the midst of experiencing, has happened before. Déjà vu is French and, when translated into English, literally means “already seen.”

I recently had a profound déjà vu experience. It happened on May 8th, four days prior to Mother’s Day. I found myself in the market that day and nearly collided carts with another woman as I rounded a corner. And in proper grocery store etiquette, we apologetically nodded our heads and then waved to each other to go on ahead. As we were passing one another, she stopped me and put her hand on my left wrist. This complete stranger looked at me with a crooked smile and struggled to form her words. It seemed as though she had some type of neurological impairment. Perhaps she had had a stroke, although I couldn’t be certain. It was clear that she was just learning to speak English and looking for the right words. And then, completely out of context, she wished me a “Happy Mother‘s Day.” I was paralyzed, right there in front of the peanut better and jelly. My breath caught, goose bumps erupted on my skin, and my eyes welled with tears. I had just received a most incredible gift.

That was it, my déjà vu moment. You see, when I looked at this woman, this kind stranger with a crooked smile, I saw a 60 something year old immigrant woman. But I felt my 3 year-old son. I had a remarkably similar exchange with him on March 10 of 2010, just 4 months before his death.

My son, Aidan, was diagnosed with medulloblastoma, a vile malignant brain tumor, just six days before Christmas in 2009. His tumor was resected just two short days after its discovery. After surgery, Aidan was brought up to his room to recover and slept off the anesthesia most of that day. When he woke up, he was different. He had a blank stare and he didn’t speak. We were informed that one of the risks of surgeries in the area of the cerebellum was the development of something called cerebellar mutism, a symptom complex that includes decreased or absent speech, low muscle tone, unsteadiness and deceased coordination, and the inability to coordinate voluntary movements. Mutism produces a severe incoordination of the motor aspects of speech. This means that Aidan didn’t lose his language. He simply couldn’t get his mouth to work to form his words. The muscles that one uses to form their words also happen to be the same muscles that one uses to eat and the same muscles one uses for facial expressions, such as smiling. At the time, we were told that the mutism may last for as little as six days or as long as 52 months.

It was during the first week of March in 2010 when we noticed that Aidan was starting to regain some use of his mouth and facial muscles. He was slowly learning to eat and make some sounds again. We were blessed to hear his sweet giggle that week, music to our ears. And he was beginning to smile again, although he had poor control over those facial muscles. His smile would often be crooked.

I kept a blog during my son’s illness. It provided the framework for what would become Aidan’s Cancer Story, written in 2012 to recognize pediatric cancer awareness month. The following is an excerpt from the 15th entry in Aidan’s Cancer Story titled, “He Speaks”:

It was on March 10, 2010, Aidan’s 82nd day at Children’s Memorial Hospital, when we finally heard him speak. It was Aidan’s first spoken word since December 21, 2009. I was sitting next to him, in his hospital bed. We were in the middle of reading a story. He stopped me and gently put his hand on my left wrist. He then looked up at me with his crooked smile as he struggled to form his words. And in the tiniest raspy voice he said, “Mom.”

This is Aidan.  He loved dinosaurs and trains and Buzz Lightyear.  He had exceptional taste in music at such a tender age.  Elvis Presley’s “Suspicious Minds” was a favorite to dance to.    Photo October 2009
This is Aidan. He loved dinosaurs and trains and Buzz Lightyear. He had exceptional taste in music at such a tender age. Elvis Presley’s “Suspicious Minds” was a favorite to dance to. Photo October 2009

Aidan, keep speaking. I am listening.

Kathleen Manning is the co-founder and director of Aidan’s Army, a Chicago area non-profit that seeks to raise funds to support pediatric brain tumor research.

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