By Stephanie Spillmann 4/28/17

 

It’s Raining in My Heart

 

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The Day the Music Died

My vivacious two-year-old, from the miracle brain tumor story, grew up to be a musician and artist of unreal talent. She started with piano and composed a song at age 11 that was hauntingly beautiful. I used to tease her that it needed a name.

 

Finally, I told her we would just call it “Boom, bang the fat man fell down, and the mustache man drove away fast.” That’s incredibly weird and seems quite insensitive. It’s actually from a story series we listened to on tape years ago. She rolled her eyes and said, “Oh mom.”

 

She moved on to playing violin and cello, could tear it up on her harmonica, and she could pick up a guitar and play anything by ear. The piano was always in her blood, though. Through the years, she learned many favorite movie scores and all sorts of classics that could send my mind into a state of nirvana.

 

I knew she had loved to sing, but she was shy and would only solo when she was alone. Recently, my oldest found some files on her computer where she had recorded herself singing several of her favorite songs. I haven’t been able to listen to them yet…my heart isn’t ready.

 

She died almost two years ago now. It is surreal to type that — she was 21. At age 16, she was diagnosed with type 1 diabetes, which is a life sentence with no cure as of yet. But there are amazing breakthroughs that are just around the corner that you can read about in my diabetes post.

 

It is also a terrible and miserable disease to live with — and for someone who’s shy and doesn’t want any attention drawn to them, it was mortifying. All the shots, watching what you eat in restaurants, low blood sugar at work, finger pricks multiple times a day…

 

She did okay for a couple of years, and then the anger and denial came, followed by intense self-loathing. Her daily doses of insulin were barely enough to keep her functioning. This was by choice. I feared for her life all the time.

 

 

In May 2015, I took my four girls to Kauai. I was about to get remarried in July, and I wanted one more trip that was just us girls. It was sublime and unforgettable.

 

We have so many amazing pictures. ​For twelve glorious days we were together, laughing, watching movies, exploring the island, and forgetting our daily burdens.

 

My oldest, who had moved out a couple years prior, hadn’t spent that much uninterrupted time with us for quite a while, and we all joyfully soaked it up.

 

This was our last treasure with my second born — time. What a gift. She died three days after we got home. Her inner pain was too much to bear.

 

 

With her went our family, a huge part of our future, our funny Caroline, and of course, the music. The glorious music I’ve heard for 20-plus years is reduced to a few recordings that are far too short.

 

​If I could put losing your child into any words it might be this… Imagine living with your heart blown to a million pieces, your mind scrambled, the energy of a zombie, and your whole body turned inside out so that you are one, giant exposed nerve.

 

I applaud all who have gone before me in this and quietly intercede for all who come after. It is difficult to breathe and near impossible to get up and live each day at first. We are survivors, every one of us. Each mother, sister, brother, dad — everyone who has lost.

 

Today, we are still living and we’re doing a pretty good job of it. My oldest is realizing a dream she’s had in her heart for years — to relocate to California where she was born. She leaves in a few days, and I’m overjoyed for her.

 

My third daughter is living in Oregon, happily independent and creating a life for herself with her talents and intelligent mind. The baby girl is now 19 and has been accepted at several colleges. She committed this week to a great school in Washington, and she is over-the-moon happy about the coming adventure.

 

Me, I got married that July. Five weeks after my beautiful girl died. It was one of the most magical and painful nights of my life. A fairytale and a bad dream sending mind and heart spinning like an unwieldy top. I also run two freelance gigs of my own. I feel like she would be proud. Who knew I had it in me? I didn’t.

 

Through this, we have learned to ignore stupid things. We crave deep people who are fellow survivors. We enjoy each other and good things more profoundly. We know what’s important, and that life is short.

 

I can definitely hear the music if I’m real still and listen with my heart. I especially hear her in that gregarious fiddle player at church, hopping all over that stage, as he plays with sheer joy.

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