Rob and Scarlett and I watched the first Harry Potter movie this weekend. I didn’t realize that it was over 2 1/2 hours long, so it was by far the longest movie she’s ever seen. I also wasn’t sure if maybe she was too young for it, because I don’t think that your average five-year-old is out there watching Harry Potter. Three-headed drooling monster dogs and a scary snakelike wizard whose evil face is coming out of the back of someone else’s head…it’s quite a step up from The Octonauts and Frozen.
But it’s an example of something I occasionally find myself doing, which is introducing her to a book, a movie, or a concept a little early just so that I can make sure I get to share it with her. We read Charlottes Web when she was four, even though I thought that might be a little bit early to deal with the themes and storyline. I think her mind probably strayed a little during the book, but ultimately she declared that she loved it, and she was especially fascinated when I started crying at the end. She brought Charlotte’s Web home from the school library this week. She wants to read it again.
Likewise, she really loved Harry Potter and didn’t seem at all afraid, and I think it helped that we had listened to the audiobook first, so that she knew the story and what to expect. When the hideous troll lumbered into the girls bathroom, Scarlett burst out laughing. It’s so important to me to be able to do things like this with her, and I’m honestly not sure who had more fun. She started the movie curled up on the couch with Rob, but by the end she was in my wheelchair with me, and I was in my happy place.
I’m feeling good and bad these days. Although my body continues its slow deterioration, mainly noticeable in my hands and arms, I’m in a better place than I thought I would be by this time. Most notably, I’m still breathing, and that’s always a positive thing.
But I come up against frustrations every day, reminders of all the help that I need. I try to just let an “off” day be what it is, without assuming that it means the future contains only a miserable string of “off” days. This can be difficult. Everyone in the world has those days, but usually people can expect that things will get better. With ALS, I know my body might not get better, but I remain in control of my mind, and that’s what I focus on.
I’m still involved and active in Scarlett’s school, and even just volunteered to join the fundraising committee, because if I know anything by this time, it’s fundraising. I also know myself well enough to know that I need to stay busy, although it’s a fine line between having projects to do and going overboard with commitments. I plan to push myself right up to that line and see what happens, and it will probably involve me crying and Rob cursing. So that’s something to look forward to.
There’s summer camp to plan, a sixth birthday coming up, and lots of writing ideas circling my brain, bumping into my misfolded proteins and bouncing around like pinballs. It sounds odd to say, but life doesn’t stop for ALS. Being a mom doesn’t stop for ALS. And as much as ALS can affect our bodies, it can’t take away who we truly are. So I guess I’m truly a spazz who just wants to have as much going on as possible. Including inducing potential nightmares in my daughter simply so we can experience some much-needed magic together.
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My husband had ALS, and your writings remind me so much of his attitude. He always referred to himself as a “spazz”. We both worked so hard to make sure that people saw him for who he was and not the disease that trapped him in his body. He lost his battle in July of 2015. I continue to do what I can to advocate for PALS and work toward a cure for this horrific disease. Thank you for your bright attitude and sharing your experiences.
Doesn’t the troll die with a wand up its nose? That is pretty funny (in a disgusting way). Scarlett seems to be an amazingly fearless kid, and you are teaching her well by example.
ha ha, I didn’t realize it was actually dead, but basically yes!
Wow….you are amazing, Sarah! I love you so much.
Sarah , todays post is painfully very similar to what my daughter , Carrey Dewey’s days are like . What you both have in common ,beyond ALS ,is a drive to get the most out of each day . Tomorrow is not promised to any of us . Admittedly, perhaps the ” clock” ticks louder for some , more than others ,you like Carrey , get the most out of each day with the things you can control . Once again , a lesson for all of us . As the saying goes , “yesterday is history and tomorrow is a mystery ” God bless you !
Thank you, Joe! Xo
Sarah, you are a true inspiration for many people. I read your blog all the time. My brother was diagnosed in 2004 and although he is still limited in many ways, he has still got his amazing humor. Your postings always bring a smile (or tear) to my face and I look forward to every one of them.
Kelly