The power to find a song that speaks to your soul

One of Bryanna's favorite song is Fireworks by Katy Perry! When she was the sickest while on Ecmo (lung and heart bipass machine), she would respond to Fireworks. She would squeeze our hands, blink her eyes and her blood pressure would go up. When she would go back for her IT chemo, we would play the song, when we were in our kitchen making dinner, in the car heading somewhere, cleaning the house...just being a family and living life - Bryanna loved this song.  Somewhere along the way, Bryanna had started to grow up. She went from being the cute and cuddly silly little girl who loved Disney Junior to preferring the Disney Channel shows, listening and knowing all the lyrics to Taylor Swift songs and loving Katy Perry. I remember when the song Call Me Maybe came out. We had just moved to Maryland from Massachusetts, and Bryanna was in Kindergarten. She LOVED that song. That song was her JAM. Which of course meant that we were absolutely going to listen to that song anywhere and everywhere we could. So, one day we went to a local park and just as we arrived, Call Me Maybe came on the radio. The park was empty, so I opened the windows of our car and cranked the radio up. Loud. Bryanna, Evey and I got out of the car and had the best silly dance of our lives. We sang that song at the top of our lungs. We danced until we couldn't spin and twirl anymore. And just at the end of the song, a car pulled up staring at us like we were absolutely crazy. We were crazy - for that song, for dancing, for just being silly, for each other, for life. 

To have a song that touches your heart - that touches your soul is nothing to be shy about. Songs that speak to you help you get through whatever battle you may be fighting. They speak to you when you need to hear those words the most. They sing their melody to you when you need to lose yourself in that moment the most. Songs...or even music may seem so trivial in the scheme of life - but really they are so powerful. Evey and Liam cannot sleep now without piano music playing softly in their rooms. We started that two years ago after trying to get past the trauma of our house fire, the trauma of being woken up in the middle of the night and getting outside as fast as we could. The trauma of losing everything (except miraculously the kids' lovies). Piano music helped calm the fears that the shadows brought. Piano music filled the darkness with love and peace. Piano music helped Bryanna, Evey and Liam sleep through the night. Now, piano music is helping Evey and Liam fall asleep knowing that they have a special routine that they enjoyed with Bryanna that is helping them now. They know that Bryanna loved that same Piano music that they love every night. It calms their fears. It brings light to the darkness, it shows them that we care. They see that we take the time to put music on no matter how tired we are. They see that I make sure that the sound is just right, and the songs playing are just so. They know that Bryanna would have been happy. They are trying to find their place of comfort, their place of happy, their place of calm in the sea of quite and darkness. The one thing they tell me they know, that they always feel, and that they like is the love that they feel. The love from us, the love from Bryanna, the love of the every day special touches like music. 

When Bryanna responded to Katy Perry's Fireworks, it brought so much hope to us. She actually responded to Fireworks and when we talked about the trip we were hoping to take with the Make a Wish Foundation to Disney's Animal Kingdom. Those moments brought an indescribable feeling to us. It was hope mixed with sadness. It was love wrapped around the desperate thought that we would do anything to make her better, yet there was nothing that we could do. We found the right team of doctors and nurses, techs and staff...yet there was nothing more that anybody could do. That feeling of desperation that you see in parents that are losing their child in movies - that feeling of being on the brink of doing something crazy and drastic with the hopes that it would save your child's life. I understood that feeling - no, I would never have done anything crazy or bad. That would have only have hurt Bryanna and the rest of our family. But, I still know that feeling of being desperate to find anything that will help her improve - that feeling of hope when she shows improvement and that feeling of absolute despair and pain the moment that I knew that we had to let her go. I remember everything as if it was an out of body experience. It's weird how much of the three months that she was admitted to the hospital, that I remember in detail - yet I can't remember what I had for breakfast yesterday. 

Bryanna's subtle responses to Katy Perry's fireworks gave us so much hope. It showed us she was still fighting. She had strength, she had fight and she was showing that to us. Someday, I will write a letter to Katy Perry thanking her for giving Bryanna those moments, for giving her a song that spoke so deeply to her, that touched her soul. I think it is important for her to know how powerful her music is, and how it truly does touch people so deeply. Even spiritually. 

The past few days have been rough. We think about Bryanna so very much these days. Not a day goes by where I don't think about Bryanna a gazillion times. Every day the kids tell me how much they miss her, how much they want to see her.  Liam wants to go to the hospital to see where she was. He wants to see her doctors. Maybe someday. But for now, we have to find our song. We have to find that one that touches our soul and gives us that strength to fight through this loss - to get through each day. As Katy Perry sings "Do you ever feel like a plastic bag drifting through the wind wanting to start again" - Some days, that is the best way to describe how life feels..Not in a depressed, can't get out of bed kind of way, but trying to navigate life without a big part of me, without the missing part of our team, of our family...with a hole so deep and an emptiness that just can't be filled at the forefront. So yes, sometimes I feel like I am just floating through trying to figure out life and making sure that Evey and Liam know that we are here for them, that they matter and are loved...but feeling so lost in this huge world. But just when I feel like that, I think about what Bryanna would have said or done in certain situations and can't help but smile and be encouraged when I think how she sang and danced especially to this particularly powerful part of the song: 

"...You don't have to feel

Like a waste of space
You're original
Cannot be replaced
What the future holds
After a hurricane
Comes a rainbow
Maybe the reason why
All the doors are closed
So you could open one
That leads you to the perfect rod
Like a lightning bolt
Your heart will glow
And when it's time you'll know

You just gotta

Ignite the light

And let it shine
Just own the night
Like the Fourth of July

'Cause baby, you're a firework
Come on show them what you're worth
Make them go, "Oh, oh, oh"
As you shoot across the sky

Baby, you're a firework
Come on let your colors burst
Make them go, "Oh, oh, oh"
You're gonna leave them all in awe..."

After a hurricane comes a rainbow - we will find our rainbow. Somehow, we will try to find a rainbow in the smallest things each day.  Evey colored a rainbow and we put it on her wall by her bed. That rainbow gave her the courage to sleep in her room tonight. That rainbow reminded her of Bryanna, and that Bryanna would have loved it. She fell asleep quickly, next to her rainbow, thinking of Bryanna and being comforted by piano music. She is finding her song.