It’s my 40th birthday. This morning I woke up in a hospital bed in a hotel in California’s wine country. The hospital bed was crucial to the trip, so that Rob and I could get some sleep. But of course there is something extremely messed up about spending your 40th birthday in a hotel with your husband in separate beds. Especially when your bed has rails.
I asked Rob to bring me to Calistoga for my birthday because the wine country might be the longest love affair I have ever had. The first time I came here was November 4, 2000. My 22nd birthday. I knew nothing about wine, except that I greatly enjoyed it, and so my boyfriend at the time and I went to all the places we had heard of (meaning all of the places that sold cheap wine in Madison, Wisconsin.) We had an amazing time. This is my happy place.
The first time Rob and I traveled here together was in 2005, Read More>
Last month there was a big ceremony at my former high school in Oak Park, Illinois. Four alumni were awarded the annual Tradition of Excellence, a recognition of work that is representative of the Oak Park River Forest High School ideals and mission. I was fortunate to be one of the recipients, based on a nomination from one of my classmates. As my ALS progresses, travel has become very difficult, and I wasn’t able to attend and speak directly to the 3000 students who piled in to the auditorium for two different presentations. Instead, I made a video, and my parents and two of my best friends went on my behalf.
That morning, I was agitated and I couldn’t figure out why. I suppose I was wondering if my words would land in a meaningful way on this audience. A big part of me was disappointed that I couldn’t be there, and I was anxiously awaiting feedback. I shouldn’t have worried. The events went beautifully, and the Student Council representative who introduced me and my video did an excellent job. Afterward, I received photos of my friends standing next to the wall where my photo would eventually be hung, alongside people who have made much grander contributions to society. It was extremely humbling.
But the best part came a few weeks later, when an OPRF senior sent me a message. Her business class finishes every semester with a group project that benefits a charitable organization of their choosing. Hannah had written to tell me that her group had chosen #whatwouldyougive and the ALS Therapy Development Institute. They made T-shirts using our logo and you can see and purchase them here.
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>