Tag Archives: bourbon

Big Day

I am on a plane. Well, presently, I’m writing a blog at my dining room table. But by the time it’s posted, I’ll be up in the air, and I even bought a new iPad for the occasion. Technically, it is mine, but it’s already loaded with kids apps and once the plane takes off, I’ll be handing it—and a lollipop—over to Scarlett. Maybe this won’t make me sound like the greatest parent, but at this point, I have very few rules for air travel. She’s never allowed to kick the seat in front of her, but if she wants to watch Dora the Explorer for 3.5 hours while we cross the country, it’s fine by me. Pretty much anything that keeps her from rolling around on the floor and licking Enterovirus D68 off of her seatbelt is fine by me.

I am cautiously optimistic about the flight. Now that I’m wheelchair bound, people do make things easy for me. We skip lines and board first (although, is that really a perk? I always used to enjoy arriving at the last minute and spending as little time as possible in the airport and on the plane.)

But it hardly matters; the flight is just a means to an end. I am so looking forward to the purpose for the trip. My beautiful niece is getting married in Lexington, Kentucky. Rob will be giving her away, a place of honor that he is filling on behalf of his older brother, John, who passed away last year. Scarlett will be the flower girl. Read More>

An Underfunded Disease

“ALS is not an incurable disease.  It is an underfunded disease.”  – Stan Appel, M.D.

Last year, my husband Rob gathered a huge team of people to participate in the Napa Valley Ride to Defeat ALS. The event was held in September in Yountville, California on a gorgeous day. And I was nervous. It’s sometimes hard for me to prepare myself to be around other people with ALS, people who are further progressed than I am. I was afraid that what was meant to be a day of fun and accomplishment was instead going to be wildly depressing.

I am happy to report that I was wrong. Read More>