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I love music. It has always had a strong presence in my life, so I knew that when I became a parent, I would incorporate music into my children’s lives as well.
I have played guitar since I was 10 years old and was trained in classical music.
But it wasn’t until I had our third child, Elias, that I realized the unique way in which music can connect people to each other.
Elias was diagnosed with Krabbe disease, a type of leukodystrophy that destroys the white matter in the brain, at eight months old. He went from nearly sitting on his own, eating crackers and saying “mama” and “dada” to losing most of his functioning. He became very weak, couldn’t eat on his own, and started having seizures.
As his development regressed, we eventually found our way to the neurology department at Cincinnati Children’s. I still remember that day like it was yesterday. It was a sunny, gorgeous day when we walked into the hospital, and I was hopeful about the outcome of Elias’s appointment.
But then I heard the words “severe” and “leukodystrophy” and tears made their way down my face. At the time we weren’t familiar with the disease but his neurologist explained to us that it is a degenerative genetic disorder that affects the nervous system. Symptoms typically appear around six months and most children do not survive past two years of age. They would do more testing to determine which type of leukodystrophy it was, as there are more than 40.
The contrast in the weather was symbolic to me – when we entered the building it was bright and sunny and when we exited it was storming. It was like the weather was matching my emotions and it was my tears that were falling from the sky. It rained for what seemed like weeks straight.
But as time passed and we came to terms with his diagnosis of Krabbe disease, I felt the clouds and the weight of it all melt away. I am paraphrasing of course, but we realized that we couldn’t stop living for Elias, our other children, or ourselves.
We relish every moment that we have with him because we don’t know how much time he has left. We have fun. We have dance parties in the kitchen. I picked my guitar back up again and we play music and sing together.
We discovered that music is the conduit for the most powerful connection with Elias. He cannot speak, see or move well. But he can hear and he loves music – it makes his eyes light up.
The StarShine Hospice Program helped foster this passion further. We met a music therapist named Brian Schreck who helps Elias play musical instruments. He will do things like place Elias’s fingers on electric piano keys and strum a ukulele. The joy in his eyes when he realizes that his fingers are responsible for that particular sound makes my heart happy.
Music allows Elias to interact with his environment and with us. When he hears slow and mellow music, his heartbeat slows down. When he hears upbeat music, his heart rate picks up, his eyes widen and he makes movements with his arms.
I think I have successfully incorporated music into all of my children’s lives. My 12-year-old daughter Livia is taking flute lessons and my 10-year-old son Leo is playing trombone (on top of our kitchen dance parties, of course).
So when we were approached by local musician Zak Morgan to gauge our interest in having a song written about our family’s story, there was no hesitation to participate. Not only would it be a time capsule in the form of music, but we saw it as a way to show our gratitude for the hospital that made us feel at home. Cincinnati Children’s has shown us nothing but kindness and compassion – from the sweet people who clean the facilities to the brilliant doctors. Doctors who involved us in every decision and made us feel like our opinions mattered.
So later into Elias’ diagnosis, Zak Morgan heard about our family’s story from a mutual friend and watched our Tell Me A Story. He reached out to me to learn more and that’s how the music video about our family came to fruition.
And it makes me so proud to see Elias in it. Children like Elias aren’t shown a lot in mainstream media. We hope that this video will help bring awareness and exposure for other children like him.
People like reading about happy endings, and while Elias might not have a happy ending, his story is worth sharing because it’s one of beauty, strength and love. Qualities that I think make great music.
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