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Soul Day

I first experienced what I now call a “soul day” three years ago this week. It was the day before Thanksgiving and I didn’t have any vacation time to take a random day off, as every hour I had went straight to clinic visits & hospital stays. My sister, nephew & niece were in town and I just really wanted to spend time with them and Kate, who was in great spirits and feeling well. My co-worker (and best friend) Megan donated one of HER vacation days to me and a soul day was born.

It snowed that day. We had breakfast at “the pancake place” and Kate was GLOWING.

See what I mean?

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Handling Anger

My finger has hovered on the “publish” button of this post now for several days, so if you’re reading this, it means I have found a little bravery. Or maybe a little “I don’t give a #&*” but either way, here it is.

The title of this post in itself is ironic considering the gist of what I’m saying is that I am NOT, in fact, handling my anger. I know that official stages of grief are BS, but that a good majority of us deal with most of them in waves, re-occurrences and oftentimes, we get stuck in one particular spot. Mine? You guessed it. Anger. Continue reading “Handling Anger”

DST and the Blues

Daylight Savings Time has never been something I cared much about. I had that awesome kid people dreamed of. The one who went to bed and woke up “normal” during DST and napped the same. But now when any little thing can (and will) bring the blues, it’s really and most sincerely not my cup of tea. Sure you get an extra hour of sleep (assuming you sleep) but it gets so dark so fast and, well, that just doesn’t do well with my moods nowadays.

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Lean In

Getting acclimated to our time zone, being back at work and back to the “grind” is going to take some time, so I’m taking a bit of a self-imposed break. BUT, I wanted to share this story.

Grief sneaks up in really obvious ways, but also in really sneaky ways. Parents like us are always AWARE of this fact, and know that something can reach out and grab us at any moment. One of those things is handling the question of “how many children do you have” and the like.

One night while in Maui, we were at a luau – seated at a table with three other couples. We all exchanged pleasantries, where we were from, what brought us to Hawaii, etc. Afterwards…the dreaded question came from one woman…”did you leave any children at home to come here to celebrate?”

A bit of silence…and then I replied (as I always do) “we have a daughter. Our four year old died of cancer nearly two years ago. But we actually brought her with us to celebrate.”

Silence.

But then, the most amazing thing. ALL THREE couples teared up, but rather than try to cover their tracks or say something in haste, they sat with the silence and the tears for a moment and then? They leaned in.

They asked us her name. Asked us to tell them about her. They cried with us for a few minutes and then asked to see a picture of her. THAT, friends, is a BEAUTIFUL way to handle someone else’s pain and I am SO GRATEFUL to the six other souls sitting with us that night. Six other people who got to hear about Kate and took a little piece of her with them.

Or a little PEACE of her.

Thank you, luau friends from Pennsylvania & Minnesota. I wish this message could reach you because I will ALWAYS remember that night.

Mahalo, Hawaii

Today, we head home after 10 days escaping to paradise. We went to Maui and Kauai, drank and ate ourselves silly, survived the Road to Hana, a stupidly absurd rough sea tour of the Na Pali coast, a helicopter flight over Kauai and we celebrated a vow renewal and remembrance ceremony of Kate on the beach.

Neither of us wants to leave, not only because we are in paradise, but because of the empty home that awaits. We both agreed the only thing we’d have changed of this trip would be Kate waiting for us anxiously at the airport when we arrive back home.

She was here with us for sure, sometimes so obviously all we could do was laugh, cry and say hello to the heavens.

Back to reality is always hard after a trip like this. Even moreso when the reality is what ours has become. But we have work to do, love to give and a beautiful soul whose memory we are sworn to protect. So…farewell Hawaii. Aloha a hui hou.

“Aloha na Hale o ‘Oukou i Makamaka ‘Ole…the fragrance of a blossom lasts even after the flower has gone.”

Twinkle Twinkle Little Star…

Two years ago today.

My house, my heart and my LIFE were so full of love I could’ve burst. I was truly the happiest I have ever been in my entire life. Family and friends in town for a celebration of life, victory and health….two years ago today was Kate’s “No More Chemo” party.

I will never pretend to understand why we were given this remarkable gift only to have it ripped away. While selfish, I know I could have handled her cancer again. I could have handled her relapse. I could handle anything thrown our way…but not this. Not what happened.

And yet, I know how lucky we were. I KNOW there are families who never even got the OPTION of this day. Because there is no “done.” There was no “better.” For this reason, and because she deserved a LIFETIME of this right here…I celebrate my beautiful, precious, smart, kind and LOVED little girl.

I love you my angel. I loved this day two years ago and I loved every single minute I spent planning, crafting and talking about it with you. I imagine heaven is just as full of pink and gold glitter, sparkles, painted faces and balloon lady bugs. I imagine you and your beautiful, perfect friends playing on heaven’s playgrounds for hours.

Twinkle, twinkle little star…do you know how loved you are?

Sick Day, PTSD…and Target

“I’m here at Target so I’ll be home a little late. Tell Katie I’m on my way. I’m picking up the prescription and anything they sell that will get her better. Enough is enough.”

I asked my mom whether I should buy the cute little elephant humidifier or the one that you can use with those Vicks vapo tab thingies.

“Cute is cute, but get whatever will WORK!” she replied. She then added “get those pads you put in the shower to steam up her bath time, too!”

It was “some day” in January and I’d been logging Kate’s symptoms, eating habits, bowel movements and sleep patterns for days. We’d seen the oncology team and pediatrician and thought we were onto something when he prescribed nebulizer treatments for likely asthma. That cold she caught in November hadn’t gone away.

I didn’t know that on that “some day” in January, Target didn’t sell what she needed.

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A Kegs & Corks Recap

Kegs & Corks for Kids’ Cancer is very quickly becoming our favorite. It was SO. MUCH. FUN. Lots of work? Definitely. Totally worth it? Without a doubt.

Beer + wine + great friends + football + cute kids + a good cause = one amazing way to spend a Sunday.

Kegs & Corks for Kids’ Cancer started four years ago and was founded by Kate’s beloved nurse, Sarah. Never one to sit back and watch the world of childhood cancer pass by without being ACTIVE, Sarah found a need to give back (as if her contributions to our kids and families wasn’t enough.) This year, Sarah decided she wanted Kate’s Cause to benefit from the monies raised and the dream partnership of Sarah + Lindsay was created and Kegs & Corks for Kids’ Cancer Benefiting Kate’s Cause was born. Continue reading “A Kegs & Corks Recap”

Why I Failed CureFest

I so wanted to come to this place after a weekend of awareness and activism with dozens of photos of the events that unfolded and new friends we’d made. I wanted to feel I’d made a difference…raised my voice. I wanted to make Kate proud – so many of these organizations there are just overwhelmingly awesome with what they accomplish and how they raise awareness.

But. I didn’t.

I failed at CureFest this year.

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I’m Sorry it Didn’t Stay Gone

I shared most of this post a year ago today when it had been one year. Today is mind-numbing to me that it has been two. A friend shared a post of her own last night that said “September is my season” referring to the season of way too many emotion-flooded days relating to special anniversaries, memories and of course, childhood cancer awareness month. I told her that September is my season too, and today is really the reason.

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