Tag Archives: scarlett

Someday

I canceled all of my appointments for this morning, feeling too tired to deal with the real world and the people who live in it. It’s raining outside and Otto is pacing the floor. I spent an hour reading blog posts that I wrote to Scarlett in 2011 and 2012. They didn’t make me sad, but I did feel nostalgic for a time when she was a ferocious toddler and I was her complete mom. I know, I know. I’m still her complete mom, but that’s not what I mean. I mean the mom who moved, who drove, who carried her across the city, even as I began experiencing symptoms of ALS. I read blogs about her first few days, weeks, and months at preschool. When I knew I had ALS, but I was still so mobile that I saw no need to acknowledge it.

Right now my sister and her family are in New York, and when I facetimed her this morning, she immediately put the phone up to the street sign over her head: 23rd St. and 10th Ave. Where Rob and I used to live. They were going for lunch at our favorite tapas restaurant, a place we frequented when we lived in Chelsea. I miss New York. I miss those early days of Scarlett in San Francisco. Sometimes I wish I could go back for just one day and appreciate the use of my legs, the strength of my arms, my ability to be alone with my little girl, or to jog along the Hudson River, just to be in charge of my life. But in most ways, I don’t want to go backwards. This month has been busy, but fun. We went to a gingerbread house decorating party yesterday, and Scarlett has a winter sing at school tomorrow. In the mornings, we sit together at the dining room table while she eats a scone and tells me stories. Who said what, who did what. She laughs and uses the words like and dude. She is so different from that feisty baby I remember, and somehow still the same. Read More>

My Kids

My sister is going back to work tomorrow, after a six-month maternity leave. It gives me flashbacks to when I went back to work after Scarlett was born. I had a very leisurely seven-month leave, and when it was over, I worked from home in my dining room, while my sister took over as Scarlett’s nanny and best friend.

Right now my parents are in town to help with the transition period, before my sister has to hire someone to take care of her two kids while she works. I wish it could be me. I would love to have that time with my niece, the way my sister had with Scarlett, to bond and play and snuggle. I want to be my niece’s favorite aunt, but how is that possible when I can’t even pick her up? I remind myself that my 4-year-old nephew hardly cares at all that I’m in a wheelchair, only noticing really that it’s cool because he gets to ride in it. He was born one month after I was diagnosed with ALS, and he’s never known me any differently.

So I won’t be the nanny, and I won’t be the aunt who picks them up and swings them around, who bakes with them and plays soccer and all the things that I would like to do both with my own child and with these two children who I feel are nearly mine. I’m not exactly sad about it. I’m so used to the situation by now, that it just feels natural to sit in my chair while someone brings the baby to me so that I can kiss her. My nephew puckers his lips and stands by the side of my chair for his kiss. I’m in a wheelchair. For the rest of my family, it’s surreal. For these three kids, it’s totally normal. Read More>

Too Beautiful

150K, people. That is what we have raised through the #WhatWouldYouGive campaign. It’s amazing. The idea was that the campaign would run through August, but we are going to keep it rolling, because no one in their right mind turns down money for a cure. We’ve also seen some late additions to the team, and feel like the fundraiser is still full of momentum. I want to thank all of our team members for their incredible efforts throughout the summer; we absolutely couldn’t have done it without you. For our new team members, and those still actively fundraising, a big thank you to you for joining and being a part of the inevitable end of ALS.

I also owe thanks to our more than 1500 donors, who gave selflessly and generously. My family and I are very happily overwhelmed by all of the support and empathy that you’ve brought to the cause. It’s true that right now there is no effective treatment for ALS, but I’m not exaggerating when I say that reading the notes from donors, both those I know well and love, and those I’ve never met, has definitely made me feel stronger and more able to stay positive.

In the realm of other things that make me happy, Read More>