So, this has the potential to be a tiny bit awkward, but I've realized that I have a few newish readers to this blog who don't necessarily know all the important background info about my family and me.
Hi Dad! I know you're reading this. Mind if I explain a little? No? You don't mind? Thanks.
So, in April 2002, my dad, age 53 at the time, was diagnosed with ALS. Pick almost any other diagnosis on the planet, and you'd rather have it. For reals. I have this independently confirmed by my friend Greta's husband, a neurologist.
What's really incredible is that it's been seven and a half years now, and he was only given about three years to live. Thanks to some divine and tender mercies, we have been able to borrow him longer than we expected, and due to the generosity of some anonymous friends, we have been able to visit regularly and inject my parents' house with some rambunctiousness. Eliza loves to ride around with him in the electric wheelchair. The other two make plenty of noise.
Things that you and I take for granted -- walking, talking, brushing our teeth, typing, rolling over in bed, breathing -- everything becomes more difficult and eventually impossible to do on one's own with this disease. So when we visit, we always seek out activities that requires as little as possible of any of the above, and that shift the focus away from what can't be done. Things like flying a kite (no photo of kite plunging toward ground on windless day).
Things like finding fresh corn at a farmstand (Dad's ultimate favorite) and bringing it home to shuck for dinner.
Things like visiting the ocean. My dad's spiritual life sustains him mightily. But I think being able to get oneself out between the sea and sky where the rhythm of life can mesmerize you with its simplicity can't be a bad idea. It sure works for me, anyway.
The one thing I didn't really bring him in on was stopping on the way home from the beach to buy a lobster roll to share with the kids. Y'all. Sixteen bucks for a lobster roll that fit into a hotdog bun (which I can't even eat!). What was I thinking? I was raised a New Englander! An offspring of my Dutch father! We don't pay full price for items bought on impulse! "Buy?" "Impulse?" Vhat ees thees? Some bolts of temporary insanity are best kept secret.
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5 comments:
Your dad is Dutch?! I didn't know that. That makes YOU dutch, doesn't it :) Which means...you must come visit sometime! Your kids have to know their roots, right? ;-) We live in Delft and we have room for guests! And hey, if you're interested, you can read my blog and see neat pictures of Holland (but I'll need your e-mail address to send an invitation).
Reading your blog, I can't help but admire your spirit and outlook on life. I'm gonna go out on a limb and guess a good bit of that comes from your parents. I know a little about ALS and just reading the letters made me go "oh no!". But the tone in which you write says a lot of wonderful things about you. God Bless you all.
It sooo warms my heart to see that you and your family have the opportunity to cherish these days together with your dad. May the Lord continue to abundantly supply him, your mom and your whole family. Lord Jesus, pour out the bountiful supply upon them day by day.
@Tamara: Yes! Invite me! To the blog, since you already invited me to Holland. :-) dillerh@gmail.com
Perhaps divine and tender mercies have allowed you to borrow him longer than you expected, but my bet is that your love and the closeness of your family is what keeps him--and you--so strong at heart.
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