Category Archives: Cure

#whatwouldyougive 2015

My daughter starts Kindergarten on Wednesday. She’ll be at this school for the next nine years of her life. I’ll drop her off on her first day, take her to her classroom, kiss her goodbye. I’ll watch her as she takes this big, brave step, meets new friends, and finds a space for herself. And I’ll think about the day, nine years from now, when she finishes her last year at the school. I’ll think about how I should be there to pick her up that day. How much I want to be there.

This weekend we went to the wine country wedding of our dear friends. I watched my daughter dance, watched her chat comfortably with other guests, watched her insert herself into formal wedding photos with the bride and groom. I watched as she ate a cupcake, and a cookie, and then wandered off to find the donuts she’d been hearing about. I thought about all the big days in her future, how maybe one of them will be a wedding. How much I’d love to be there.

I love watching my daughter. I love to see her learn and grow and do ridiculous things followed by remarkable things. Being there for her, in moments big and small, is all I want in the world.

And it’s why I started the #whatwouldyougive campaign. I can’t adequately express my gratitude to all of the team members who challenged themselves by giving up an ability to raise money for and awareness of this cause. You have no idea what your support has meant to me. All I can say is thank you. And that you are some *seriously* impressive fundraisers.

It’s the last day to donate, and so many of you already have. Thank you. Your generosity wildly exceeded my expectations. Thank you for caring about our lives, and the lives of all the people dealing with ALS. Someday this disease will no longer be allowed to destroy families. Someday, maybe, I’ll see my little girl walk into high school. Someday, maybe, I’ll dance with her again. I hope so.

Donate here.

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Ice Bucket Challenge

Rob and Scarlett are dueling over music right now. He’s controlling the Sonos system in the house, which means he basically wins, but she’s giving him a good run on the back deck with Let It Go, tinny on my cell phone, but somehow still SO LOUD. Rob turns up The Black Crowes. Scarlett clears her throat and gives it her Elsa all.

The battle flips to Margot and the Nuclear So-and-So’s versus something horrendous from Kidz Bop. Obviously this seemed like the perfect time to sit down and try to write.

Rob is still on vacation this week, but we’re home, just dealing with end-of-summer things: purchasing school uniforms, contemplating how to handle an $875 parking ticket, continuing our efforts to train Otto (and wondering if his training could include a court appearance to argue that ticket down to a more reasonable amount. This is a story for another blog, especially if Otto does end up being our lawyer.)

Can we really now be listening to both Bonnie Raitt and The Wiggles? Why is this happening?

Rob is opening a bottle of wine. Now that’s a sound I can handle.

Today was Ice Bucket day. I knew we would be doing the challenge again, but Scarlett was vehement that she and Otto be our family representatives in the chilly endeavor. So there they were in all their glory, (slightly different from their current status running in circles together listening to Shut Up and Dance With Me while Rob tries in vain to calm things down with Tom Petty’s Wildflowers. This is not an “everyone wins” situation.)

A reprieve. Scarlett and Otto go deeper into the yard, their noise receding until all I hear is Rob’s REM. The wine is pink and cold, the grill is filling the yard with sweet and smoky smells, and a breeze is blowing towards my spot at the dining room table. I think I’ll leave it at that, enjoy having only one song in my head, and just share our #icebucketchallenge video.

Every August Until A Cure.

Wait. Taylor Swift vs Led Zeppelin? Someone stab me with an ice cube.

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In the Words of The Team

It’s Day 6 of #whatwouldyougive. The observations and insights from the team members have really touched me. It didn’t take long for people to clue into emotions and feelings that I’ve been having for the past three years. I’ll let them speak for themselves, after reiterating how grateful I feel that they took on this challenge. The campaign feels like a success, with nearly 100K raised, and that has everything to do with the team members and donors. THANK YOU ALL, from the bottom of my wheelchair (or perhaps the bottom of something less disgusting.)

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“The most challenging part was that I couldn’t make friends as easily as I normally do. I can talk to a wall and love having conversations with strangers. I just didn’t feel like me! That is the most upsetting part of ALS; people’s personalities, what makes you uniquely you, eventually gets stripped away.”

“Some unexpected things I’ve learned today about not being able to use a limb: it hurts, throws off your equilibrium, and can even make you feel claustrophobic. Multiply that by 2, 3, or 4 permanently and you have the experience of an #ALS patient.” 

“During the day I felt many emotions: sad, rude, introverted, inefficient and annoyed. I carried a note around with me explaining my silence. The second person I showed it to (at early yoga) said her brother died of ALS.” Read More>

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