Category Archives: Relationships

Phasing Out—A Guest Post by Carrey

Many thanks to Carrey Robinson Dewey for providing today’s guest post. Carrey first shared this on Facebook, and I thought it was so honest and enlightening. This is life with ALS: abilities—moments, really—are taken from us. Family life changes in ways we didn’t foresee and do not welcome.

It isn’t easy, and it requires us to shift our thinking every day so that we don’t drown in the reality of the disease. So that we can keep taking care of the people we love, even if we sometimes feel that we’re doing it from the sidelines.

PHASING OUT

Our morning routines have been nuts-o here at the Dewey household the past few years. In the morning, I wake up first, craft my edible art we call lunches, get the basic breakfast supplies out, cut fruit, empty the dishwasher, greet hubby when he comes downstairs, fix his collar, hand him breakfast, kiss him goodbye—finish getting lunches, backpacks, folders ready, find shoes, fix bedhead, stick a hair bow in, and a final “don’t forget to brush your teeth,” kiss them and put them on the bus routine!

That was all before ALS. Read More>

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

You’re Not You

On Saturday night I watched the just-released movie You’re Not You, starring Hilary Swank as a woman with ALS. Swank’s character, Kate, is 35 when the movie—and her disease—begins, and I wasn’t sure what to expect from a film that set out to tell a story that is so close to my own. Though I initially understood this to be a memoir, it is actually based on a novel written in 2007 by Michelle Wildgen. A very brief scouring of the Internet did not uncover Wildgen’s ALS connection or the source of her ability (or is it the screenwriters’ ability?) to so cleanly access many of the emotions and challenges that come with having this disease.

It was my story, at the same time that it wasn’t my story:

The pre-ALS life, full and fulfilling: check.

The initial symptoms, the confusion: check.

Fast forward to a husband helping with clothing: check.

The feelings of blame and guilt: check.

The comfort that comes from connecting with other ALS patients: check, check, check.

But… Read More>

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

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>

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