Category Archives: Life

To My Nephew On His 5th Birthday

Dear Jack,

The first thing I thought when I woke up today was that you are five. FIVE. That means it was one whole hand ago that I walked into your delivery room, commandeered the video camera, and proceeded to document your birth. It was one of the most amazing moments of my life. As your mom and dad were falling in love with you, I was falling in love with you, too.

You had giant eyes and even bigger cheeks, and you were absolutely perfect. I didn’t stay long after you were born. I wanted to give you three some privacy. Or rather, I should say I wanted to stay and stare at you forever, but it felt like I should give you some privacy. I drove home and walked up two flights of stairs to where Scarlett was asleep in her crib. I told Uncle Rob everything about you. Everything about your brave and incredible mama and your rockstar dad. I told him how it felt to watch someone come into the world and to know that they are quite suddenly one of the most important people you will ever know.

Fast-forward five trips around the sun and I feel so lucky that I’m still in your life. Read More>

| Categories: Age, Life, Relationships | Permalink

Identity Theft

I think Otto might be having an identity crisis. He hasn’t said anything specific about it, but Scarlett changes his name nearly every day and I just feel that this must be confusing. Sometimes she calls him “Sticks” and other times she affectionately refers to him as “Phinneas.” She has spent hours telling him that his name is “Bernice”, and I once caught her chasing him in the backyard with a stick screaming “COME BACK, PROFESSOR!”

In case that thing about the stick alarms you, let me assure you that the professor was having the time of his life.

But really, what’s in a name? An Otto by any other name still farts as much. I guess I’ve been thinking about identity a lot lately, because there is so much wrapped up into what we consider our self, and it’s undeniable that parts of myself are slipping away from me. I’ve never been someone who dwells in the past, at least I wasn’t until I got ALS. Now I look back with a nostalgia typically reserved for someone who has lived twice as long as I have. I have never wanted to go backward, but I would like to go forward differently. I would like to feel more like me.

The writer Gerda Saunders recently published a book called Memory’s Last Breath: Field Notes on my Dementia. I read a review of the book and was struck by the following phrase: Read More>

|Categories: Life, Meditation, Progression | Tags: , , , | Permalink

Mom’s Week Off

It is Day Four in San FrancIsco without Scarlett. In many ways, I’m doing better than I thought I would be. I’ve been sleeping in, which never happens when the small human is present. And Rob and I have been having very mellow evenings, with no one popping out of bed 17 times because they “have to pee/get water/hug Otto/learn how the BiPAP works/look in the refrigerator and consider the following day’s breakfast.”

We’ve even been able to watch HBO’s The Defiant Ones at a volume loud enough to hear, without worrying about a little voice calling from bed, “What are you watching? Did that person just say fuck? Why did he say fuck?” And you know the answer “Because he’s Dr. Dre.” probably won’t suffice.

Parents who are smarter than me, and there are many of you out there, probably already knew that having your kid away for a week can be relaxing. I have intense moments of missing Scarlett, and a couple of nights I’ve had dreams that she is a toddler and we are dancing together, buzzing like bees inside a preschool room that I have never seen in real life. I wake up desperate to hold her. But there is stress relief in knowing that your child is well taken care of, and that the responsibility for her resides entirely with someone else, if just for a few days. I have, for example, not even considered grocery shopping. Read More>

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