Our Rituals, Our Music

Written by Dianne Gray for Room 217 Foundation/ Canada

It is an amazing thing how the threads of our simple rituals can become the very fabric that keeps us together when our lives seem to become unraveled.

Many of us as families have a routine with our kids at bedtime, one that at times is both sweet and exasperating, depending upon our own level of exhaustion at the time. Do you have a routine with your loved ones? For me, a daily event meant the singing of three bedtime songs to my then two-year-old son Austin. Now, if you’ve ever heard me sing, you would know this is not a good thing! He didn’t seem to mind my off-key voice, however, as he requested the same three songs night after night for as many years as I can remember: The Barney Song (his title for the I Love You song in the TV show), Twinkle Twinkle Little Star and the hymn, Amazing Grace.

For years, I continued to sing these songs to him when we would settle in for the night. Somehow, it just became "what we did" though the content of our days changed vastly once he was diagnosed with a rare genetic brain disease at the age of four. Shortly before his fifth birthday, Austin, a tan, blond-haired, green-eyed, bundle of love and energy, stopped walking. There were "signs" but nothing to indicate that the years of imbalance and falling down would lead to the inability to walk, crawl and eventually to move his arms and body. For us, our lives changed forever with the diagnosis of NBIA Disorders (Neurodegenerative Brain Iron Accumulation) on Christmas Eve, 1995. This horrid disease, the doctor told me, would rob him of his vision, and would eventually take his life, paralyzing him through the years, while leaving his cognitive abilities intact until the very end.

At nine years old, Austin lost the ability to speak. His once repetitive requests stopped, and the silence was deafening. So we filled the house with music: the same music I had danced with him to and that he would sing to.

He delighted in the songs of Garth Brooks, the Lion King soundtrack and Raffi, as well as the sounds of dolphins and babies. The music comforted both of us through his pain and intense muscle spasms that were strong enough to fracture his femur while lying in bed one Halloween night.

You may be asking about his medications after reading about such a horrible disease. There were plenty of them. Yet while they brought pain relief, they did not bring comfort. Eventually, while heavily sedated from morphine and several other drugs given every hour and a half, the physician mentioned that Austin was simply "not there mentally." That same week, Jona Kimbrough, a gifted contemporary Christian singer from our church, offered to play her guitar and sing to Austin every Wednesday in our home. The bond between the two of them became so strong, that Austin, while bedridden and unable to speak, would frown and moan when it was time for Jona to leave. During an especially difficult week for Austin, the physician decided that he simply “wasn’t there any longer.” Yet it was Wednesday, and Jona came to sing her songs.

She started with Amazing Grace, his favorite. Three bars into the hymn, he smiled sharing the most extraordinary and luminous smile. We knew then that he was indeed "there." Singing through tears, Jona continued, and we then knew in our hearts that the spirit of Austin would remain stronger than his disease ridden body ever would.

Austin passed away at the age of 14 on February 25, 2005 after a long and difficult struggle. The songs that became our ritual and guided us through pain are now the songs that make our hearts skip a beat in remembering our very special boy. Friends young and old have shared with me how they hear "his songs," feeling his spirit there at that moment. One of Austin’s closest friends, Melissa, called this summer, sharing her story of how during her visit to Notre Dame Cathedral in Paris, the choir began singing Amazing Grace – in English! She feels it was a message to her, from him, in a most incredible way.

So it is in this spirit that I ask you to explore your own rituals with music, knowing that when our loved ones pass on, the music we share with them remains, no matter how far we feel we are from the journey we once shared. Perhaps the following lyrics from a song by Trisha Yearwood say it best:

The Song Remembers When
I was standing at the counter
I was waiting for the change
When I heard that old familiar music start
It was like a lighted match
Had been tossed into my soul
It was like a dam had broken in my heart

After taking every detour
Getting lost and losing track
So that even if I wanted
I could not find my way back
After driving out the memory
Of the way things might have been
After I'd forgotten all about us
The song remembers when

May music fill your heart with a recognition that simple words cannot, all the while creating an enduring fabric that becomes the tapestry that will unfold for rest of your life.