When the Band Train Answered a Chronic Illness Question I'd Been Afraid to Ask

Music has always been a comfort to me and my family while on this journey of living with chronic illness.  Both of my babies were born premature, and they spent months in the Neonatal Intensive Care Unit (NICU); there was little I could do for them. When they were stable enough for me to hold, I would rock them gently and sing softly. My daughter’s song was “Tupelo Honey” by Van Morrison. “She’s as sweet as Tupelo Honey / she’s an angel of the first degree / and she’s as sweet as Tupelo Honey / just like honey baby, from the bee…”  I remember the first time I held my baby boy; he had on a little knit cap to the keep his tiny head, about the size of a baseball, nice and warm. The cap was blue, brown and orange, and my husband and I joked that he looked like a little Rastaman. As a result I started singing “Three Little Birds” by Bob Marley to him. The chorus of “Don’t worry about a thing / ’cause every little thing’s gonna be all right” is comforting to me to this day. And our family will forever know it as “the hospital song.”

There have been numerous days over the past 14 years when I didn’t possibly know how I could manage one more setback, diagnosis or surgery. On those days, I’d roll my car windows down and blast “Walk On” or “Beautiful Day” by U2 and let the wind wash away the pain and struggles. I would sing along at the top of my lungs. It’s funny how you can hear a song many times but never really listen to it; it’s when I’m at my most vulnerable that the lyrics really hit me, and it’s almost as if I find answers to questions I didn’t even know I had to ask. I find myself covered in goosebumps.

Most recently, it happened when I took my 14-year-old daughter Shea to see the band Train in concert at our local outdoor amphitheater. We’d just returned from a wonderful family vacation, but like all vacations, this one ended too quickly and reality hit me like a ton of bricks as I looked at my calendar full of medical tests, doctors’ appointments and finally a surgery scheduled for my son in September. I was overwhelmed and sad that the remainder of my children’s summer vacation really kind of sucked. They were not going to day camps or sleepovers with friends; they were going to visit the dentist, orthodontist, geneticist, ENT and the cardiologist. 

Both of my kids are hard-of-hearing and require bilateral hearing aids. They also live with a condition called Chiari Malformation and many of its related conditions. My daughter ended up hitting the genetic lottery, and she seems to have the most medical challenges, including cardiac issues. She has something called cardiac heart block, borderline hypertension and also a leaky mitral valve. Most of her concerning cardiac symptoms seems to take place when she’s asleep, as indicated by the 24-hour heart monitor she’s hooked up to several times a year. Knowing this also makes it difficult for me to sleep. When she was a baby, I would frequently sneak into her room at night and lay my hand on her chest to make sure she was still breathing.  Here we are 14 years later and I still do it.

On the day of the Train concert, I was tired and depressed and I really did not feel like going out. But I put on a smile and my skinny jeans and helped Shea pick out a cute outfit, suited for what I considered her first real concert. We arrived just as the first opening act was winding down. Shea asked me how loud it would be and wondered if she should turn off her hearing aids. Despite her hearing loss, she’s sensitive to overly loud conditions. I reassured her we weren’t at a heavy metal show and that if it was too much she could turn her hearing aids off or down. The lights dimmed and the sound of a locomotive roared as the band took the stage. We jumped to our feet and were soon swaying to the music. The look on Shea’s face as she watched Pat Monahan (who she’s described as “very cute, even though he’s the same age as you, Mom”) interact with the crowd and sing like nobody’s business was enough to make me forget how tired I was and I just enjoyed the moment. I could feel her excitement as she took videos of the performance. And then the band took it down a notch, and just like that, it happened — the music hit me.

The song was a tune called “When I Look to the Sky.” I’d heard it many times before, but for whatever reason, on this particular day I actually listened to the lyrics and within them I once again found answers to a question I’d been too afraid to even acknowledge. Will we be all right?

Here’s a small sample…

When it rains it pours and opens doors
And floods the floors we thought would always keep us safe and dry
And in the midst of sailing ships we sink our lips into the ones we love
That have to say goodbye

And as I float along this ocean
I can feel you like a notion that won’t seem to let me go

Cause when I look to the sky something tells me you’re here with me
And you make everything alright

And when I feel like I’m lost something tells me you’re here with me
And I can always find my way when you are here

And every word I didn’t say that caught up in some busy day
And every dance on the kitchen floor we didn’t have before
And every sunset that we’ll miss I’ll wrap them all up in a kiss
And pick you up in all of this when I sail away

And as I float along this ocean
I can feel you like a notion that I hope will never leave

Whether I am up or down or in or out or just plane overhead
Instead it just feels like it is impossible to fly
But with you I can spread my wings
to see me over everything that life may send me
When I am hoping it won’t pass me by

And when I feel like there is no one that will ever know me
there you are to show me

Cause when I look to the sky something tells me you’re here with me
And you make everything alright
And when I feel like I’m lost something tells me you’re here with me
And I can always find my way when you are here…

Tears ran down my face as I watched my daughter sing along to this beautiful song. I felt emotions I didn’t even know existed, and more important, I felt a sense of peace come over me. I just knew that no matter what happens, no matter what our future may hold, everything will be all right because the love I have for my daughter, my children, my family and the love we have for one another is infinite. No matter what, we will always have one another… and I felt the all too familiar goosebumps. I put my arms around my daughter and we swayed together with the music, and Train healed me.