A day with Daddy

As luck would have it, little brother Bravery got to have a pretty incredible adventure with Daddy this weekend. A friend invited us on his boat to watch the Redbull Airplane Races from the water!!! (of course it was from the water, I'm Captain Obvious. boats = water)  They had an amazing time....it's not often we get to take Bravery out on cool adventures, you see, we're all just a little bit terrified to leave Amelie for very long. The doctors gave us a terminal diagnosis, one we politely ignore and defer to God for the miracle, and with no particular time frame attached to it, every day is a blessing no doubt, but we live on this sort of knife's edge, ever fearful of getting too comfortable in this routine.....

It's always been, almost her entire life, that as soon as this child starts to THRIVE and GROW, something happens. The details for another post, another time. It's hard to even type it b/c it makes my heart ache just thinking about how this child has basically been given the shit end of the stick her whole life.  So, we stay home. A LOT. and some days, even the homebody Hubbs (wait, that’s actually going to be my new nickname for him, “Homebody Hubbs” boom.) it's hard for us, b/c we're movers and shakers. We like adventures, and traveling, and fun days outta town for no reason, and we especially love vacations (on the beach with a glass of champagne and easy on the eyes waiter, preferably)….

So when Bravery gets to go on adventure—b/c let’s face it, he’s deeply struggling emotionally right now—it’s pretty darn awesome for him. We got to the dock and he couldn’t wait to get on. Literally, he could not wait. He jumped from the dock right on the boat and gave everyone a massive heart attack. He loved it. He LOVED the boat ride with Daddy, the totally unauthorized, NOT MOMMY APPROVED, completely unsafe, adrenaline junkie speeding ride back to harbor. Your Honor, I’d like to submit as evidence the following photographs, see below.

Amelie woke up not doing well, you see, so Mommy didn’t go (yes, I often refer to myself in the third person, but only online, bc I’m cool like that). Amelie’s eyes were sort of cloudy, her face red, and she was a little angry. She was vocal about it, too. So, I took one for the team. I admit I was bummed for a few minutes, then got my head out of my own pity party, grabbed 5 iced teas from Native Foods (a local vegan place here I’m totally addicted too, and the iced teas are organic black beach tea, with a perfect 2-second splash of hibiscus and lavender lemonade, it’s perfection really), drank all said 5 iced teas, and went home to be with my girl. And she was fine. More than fine, she was already back to sleep, peacefully and skillfully put to sleep by one of our amazing nurses, Emi, whom I’ve already decided I can’t live without. I want to build a shed in the backyard and have her live there. I spent the afternoon at home, in our insanely obnoxiously loud, I mean peacefully quiet backyard, near my babes, and I just felt GOOD about it. I was missing a boat adventure, a brunch with some amazing girlfriends, the outdoor free yoga in the park, all of which are activities in the top 5 of all my favorite activities, but my heart was at peace. Which means I was doing the right thing. I know that may sound pretty effin obvious (I’m Captain Obvious today, remember?) to ya’ll reading this, but it’s not as easy as it sounds to halt life in the most unnatural way.

This is what all cancer families go through. Life as you know it just STOPS and another one begins. And it’s often pretty shitty. Reminds me of all those weekends in the hospital where I waited for Amelie to fall asleep, then I cried my eyes out so hard until my body gave out from exhaustion and I passed into sleep myself, only to be woken up by Amelie vomiting all over the place and calling the nurses in a panic.

I admit, I want those days back. I want those days where I can HEAR her talk and see her RUN, and I’ll spend every night on a hospital couch if I have to. But, there’s another part of me that doesn’t want that ever again. Amelie was in a LOT of pain then. She was miserable. It was tortuous to anyone who was around her, how tormented on every level Amelie was during treatments. And you know what? She’s not in pain anymore. She’s calm, relaxed, warm, undisturbed at home, surrounded by friends and family, with no needles or painful procedures or chemo drugs ravaging her little body and crushing her delicate spirit. We are home on hospice and its poetically, heart-wrenchingly beautiful. She can’t eat Pirate Booty (her hands down fav snack) but she’s comy and resting as often as she wants, with a nightly hot tub excursion followed by a long, hot bath. She falls asleep peacefully every night and, for the first time in over a year and a half, she’s not violently vomiting anymore.

It’s not a wild boat ride across the ocean, but it is CALM and COZY. I can’t help but think it’s the calm before the storm, but then I realize I am in the storm. We, as a family, are in the middle of a storm. We’ve just gotten so acclimatized to the shitty weather, we don’t notice it anymore (kind of like people in Boston. Sorry, but your weather there is just so awful. Be proud of your cold ass winters, I’ll give you the medal from my beach chair).

Tomorrow’s forecast? Sunny with a chance of your worst nightmare coming true.

HAHAHAHA ok I’m laughing out load right now. like so LOLing right now. I’m twisted, I know. But it’s just a funny way of describing the truth, really. It’s so sunny here in SD, some days I want it to pour rain and darkness so the sky matches the grief in my heart. Then I quickly take it back, beg the Sun God’s forgiveness, and go back to my worship of all things sunlight. And I do that joyfully, with glee and gratitude, even if I can only go as far as my front patio.

 

Xo

Amelie’s Mommy

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