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The First Day of School…That Wasn’t

The day after Labor Day means the unofficial start of fall and here, in our county, it marks the first day of school. Kate should be starting kindergarten today. She should have been dropped off this morning with a new backpack full of supplies a cute new outfit on…and a bow in her hair. There should be a first day photo of her proudly smiling on our front porch. A classroom with a teacher excited to learn more about her. A desk with her name.

Childhood cancer took that right away from my little girl. It stole the opportunity of a lifetime of learning, starting right here, today. In a classroom at Dranseville Elementary School with new friends, new books, new people and new hope.

Instead of dropping her off and worrying about her all day, I visited her at the cemetery and miss her beautiful face.

This is childhood cancer. This is my life.

Diagnosis Day – 3 Years Later

The peaceful, happy and normal world we lived in turned upside down three years ago today when Kate was diagnosed with leukemia…for the first time. She was just a baby…only 26 months old. She still had baby fuzz hair. She still used pacis. She would work at it for 25 months but she would kick cancer to the curb. She was high-risk upon diagnosis but for some reason, that’s not what we heard. What we heard was “this is the most treatable type of pediatric cancer. If you have to have a child with cancer, THIS is the one you want.”

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Daydreams of Kate

I have this dream…it’s more like a daydream but it only really comes to me when I’m drifting off to sleep or just about to wake. There is no business of the day or self-imposed to-do list to keep busy. It’s when I know you’ll always come. It’s this beautiful sort of feeling and sense of you. The daydream is about what it will be like when we finally reunite again in heaven.

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The Soundtrack of my Life

Yesterday, I decided to share a snippit of my story with Coldplay because I had a dream they would read my post. (I also had a dream they sang Happy Birthday to me at the Kentucky Derby, but that didn’t happen.)

I fell in love with my husband while at a Coldplay concert…I can remember the precise moment. “The Scientist” played in the background. When we married years later, our recessional song was “Yellow.” When our beautiful daughter was born, it sort of morphed into our song…all three of us. “Look at the stars…look how they shine for you…” how fitting, no?

When that same beautiful daughter was diagnosed with cancer at the age of two, I couldn’t hear “Fix You” without her face coming to mind. (I still can’t.) Lyrics from the song are being engraved in her headstone. After she’d been in treatment a year, I made her a video with the song “Us Against the World.” When she reached the end of treatment, “Sky Full of Stars” was our anthem. She’d say “MY SONG MOMMY!” when we heard it together.

When she died in January of this year after relapsing from the same cancer she had just beaten 4 months earlier, I heard “Everglow” and felt like it was written just for me. It spoke to me so deeply that it’s now forever a part of my person; part of my Katie Girl’s tattoo.
I’ve heard “Paradise” a million times, but it took a new meaning to me the other day when I heard it again. I feel like every time I close my eyes, I dream of seeing my girl again…in Paradise.

Coldplay writes the soundtrack of my life and I am forever grateful.

You Should BE Here

It is just as simple and as complicated as this.

Some days I do okay. Then days like today I fight…FIGHT. I work at it all day long to choke back the tears until my throat hurts and I collapse at home unable to do anything but pull the covers over my head and sit numbly wondering what’s next.

Kate, you should be here. Because you were only four years, six months and six days old. Because you had the “good kind.” Because from day one, you did so remarkably well. Because we did “everything right.” But because of some God-only-knows reason, you are gone. You are gone because we failed you. Because you, as a child, weren’t a priority for our nation, there were no medications available to you to keep your cancer from coming back. So then why did we torture you with it for two years if it wasn’t going to work?? It shouldn’t have come back and it damn sure shouldn’t have come back as fast and relentlessly as it did. You were going to be okay…everyone thought so.

And so I lost you. I lost you FOREVER. You won’t be coming back and this is the life, the hole, the emptiness we have to live with in the wake of your absence. And I do mean the wake…because the waves have knocked me down over and over again and I’m just sometimes really tired of getting back up.

I miss you Kate. Every single smart, tender-hearted, kind, loving, silly, funny, quirky, beautiful ounce of you.