Category Archives: Life

The Way Things Are

As a family, our morning routine needs work. Yesterday was the first day of kindergarten, and despite our efforts to arrive early, we did not even manage to arrive on time. Scarlett wears a uniform, I had planned quick and easy breakfast options, Rob was up early to shower. But it didn’t matter, because, not to be dramatic, everything takes us forever.

Today we actually had to wake Scarlett up for school. This child has never had to be woken up for anything, but we were told that kindergarten can be exhausting, and that appears to be a true story. She rolled around for a few minutes before springing out of bed, ready for another day. Oh, to wake up like that. She then proceeded to eat two pieces of toast and a banana as though it were a three course meal that she was reviewing for The New York Times, by which I mean sloooowly. I know we’ll get the hang of this, and I really don’t want to stress her out, but watching someone get ready at a snail’s pace turns out to be one of my least favorite things.

On the plus side, the first day of kindergarten was fantastic. She may have been the last kid in the class, but it was a mellow morning and no one seemed to mind. It was a half day, only three hours long, and Rob and I attended a parent orientation meeting after dropping her off. I spent the rest of the morning sitting outside, getting to know other parents, before it was time for early pickup. Scarlett was disappointed when it was time to leave, which I consider a very good sign.

Chatting with the other moms and dads felt so normal. I really liked everyone and I felt like we were going to be part of a great community. As we left, I was tired but definitely in high spirits. Things are good.

But things are hard, too. Read More>

|Categories: Life, Parenting, Progression, Relationships, Vanity | Tags: , , | Permalink

#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.

|Categories: Cure, Drugs, Life, Parenting, Research | Tags: | Permalink

The Parking Ticket

The dog had been in our possession for four days. He was small and cuddly, and peed wherever he felt like it. Every morning, sometimes as early as 4:45, he would whine to let us know he was ready for the day to start. It was time to take him to the vet, to get him vaccinated, the goal being that he could eventually graduate from the backyard, run around in the real world, tire himself out and maybe sleep until 6:30am.

Rob was working, so the vet visit was up to me. My assistant Rochelle, Scarlett, Otto and I got into the mobility van and set out on our mission. I was feeling short of breath, still not far enough away from my ICU visit to be purely comfortable in the great outdoors, and looking forward to my new anti-anxiety medication kicking in.

It did kick in, somewhere in the middle of the appointment, and I began to feel my personality returning. The visit itself was uneventful, except that obviously Otto peed on the floor.

When we got back to the car, there was a ticket on the window. Rochelle picked it up and handed it to me. $875 for parking in a handicapped spot with an expired placard. Unbeknownst to me, the placard had expired on June 30. It was July 15.

If you have a permanent parking placard, there is supposedly nothing you need to do but wait for a new one to arrive when the old one expires. But nothing had come in the mail, and I hadn’t even noticed. I don’t think about the parking placard very often. I drive around in a mobility vehicle, with a wheelchair and hands that can’t even reach up to greet a friend or new acquaintance. I was relying on the efficiency of the DMV. Cue insane laughter.

We went home and I stared at the ticket. It felt like an insult. Obviously an officer had placed it on the mobility van. Who the hell would be driving that thing if they didn’t have to? Read More>

|Categories: Life, Venting | Tags: , , , | Permalink