Friday, November 15, 2013

Monday Coffee

I'm pleased to announce that an essay I wrote about John, my son with Down syndrome, is included in a book that was released on Saturday.  Monday Coffee and Other Stories of Mothering Children with Special Needs is available on-line at Barnes & Noble and amazon.

As I was looking at the title this morning, I got to thinking that I feel like a fraud.  I don't think I know much at all about mothering a child with special needs.  John's "special needs" are so minor.  He's delayed, there's no doubt about that, and who knows what the future holds as far as what kind of support he'll need once he leaves the school system, but for now my job is relatively easy.  The most difficult part of mothering John has been dealing with his medical issues. I deserve a medal for working through some of the complex medical stuff we've had to deal with.

If you've ever been intimidated by doctors as I once was, you'll find that having a child with unusual medical issues quickly fixes that.  I've sought second, third and fourth opinions to find the care John needs.  When you've seen more than one doctor for the same issue and no one seems to know what's going on, you educate yourself and end up with just enough knowledge to go back to the medical professionals and demand they take your concerns seriously.  I've gotten good at creatively combining words in a Google search to locate the information I need, and then reading studies in medical journals, stopping every other sentence to define unfamiliar medical terminology.  I can explain the meanings of porcine bronchus, posterior urethral valves, methemoglobinemia, os odontoideum, and bipartite atlas.  When it comes to John's medical care, to keeping him alive, I'm a rock star!  The other stuff, the special needs stuff, is easy.  This is pretty funny considering how I felt when he was first born, how I didn't think I was up to the task of raising a child with special needs.

So, go order the book, but know that at least one essay-writing mother included in the compilation feels a bit like a phony.  (I've also been pretending to be an adult for a few decades, but that's a post for another time!)

Friday, November 1, 2013

You can't sit on an iPad

Isn't technology fascinating?  I'm amazed by all the fun devices out there, by how small they are and what they can do.  Sometimes it feels as though I've stepped into an old episode of Star Trek: "Beam me up, Scotty!"  Every time I use my flash drive, I look over my shoulder for James Bond, certain he'll be there ready to steal the highly classified information contained on that super secret, super small, technologically incredible invention.

What I can't get my mind around is the cost of owning and operating most of the new technology.  I don't have a smart phone because I can't imagine spending money every month for a data plan.  I like having a cell phone--I've gotten spoiled that way.  The money I spend on my basic plan is worth it to me, especially if it means I can be out running errands but the school can still get ahold of me if they need to.  But what would I do with a smart phone?  Do I really need to be connected all the time?  Sure, it would be fun to post pictures on facebook from anywhere at any time.  And it might be convenient to find out how late a store is open or where a particular restaurant is located when I'm not near a wifi connection, but all that still isn't worth the cost to me.  At times, though, I feel a bit panicked, like I'm being left behind technologically.  I watch other people use their smart phones, iPods and iPads--it all looks like so much fun!

I went out with a friend recently.  She had a small Samsung tablet.  She showed me pictures.  She showed me videos.  She showed me how she could connect to the coffee shop's internet.  I wanted one!  I could keep my pictures there.  I could take videos of my kids.  I could buy ebooks and read them on it.  It would slip so nicely into my purse, I could leave my laptop at home.  I could load it with music.  I've never owned an iPod because of the cost, but this would do so much more than an iPod, I reasoned, it would totally be worth the cost.  I went to Best Buy to look at them.  They weren't as expensive as the Apple products.  I went to Best Buy again.  I wanted one, but there wasn't any extra money in the budget.  Until there was.

Years ago while John was still on treatment for leukemia and inpatient at the hospital, I watched an infomercial late one night sitting in his dark hospital room.  Beautiful, thin, fit women demonstrated the use of a piece of exercise equipment.  The exercises seemed easy, like something I could do.  The women had all lost weight.  It was expensive, but I was sure it would change my life.  I ordered it a few days later when we were home again.  When it arrived, I took it out of the box and set it up.  Then I folded it and carried it downstairs, and we tripped over it in our basement office for years.  Years.  I never opened the DVDs that came with it.  I never inflated the little exercise ball that came with it.  "We should sell that thing," Tim said a few weeks ago.  And then when I was out of town, he dragged it upstairs, took pictures of it, and sold it on craigslist!  (Many thanks to the Fluidity company for re-running the same infomercials and re-igniting interest in my long-ignored fitness exercise bar!)

Suddenly I had the money needed to buy myself a Samsung tablet!  On Monday I went to Best Buy and relinquished a handful of cash for the sleek, lightweight electronic device.  I brought it home and turned it on.  The screen lit up with vibrant color and I discovered a whole host of cool apps, many of which were free!  When I asked my daughter about downloading music from her iTunes account, I was disappointed to learn that I needed an Apple device to download music from iTunes.  (Of course, I thought to myself. That little "i" should have clued me in.)  Now what could I do with my new tablet?  I tried surfing the internet, but it was more cumbersome than with my laptop, which was sitting next to me on the coffee table.  I could take pictures with it, but I wasn't very impressed with the quality. I have a digital camera that works just fine.  I could play games on it, and I did.  For four days I played games on it.  Had I really just paid all that money for a handheld gaming device, a toy?  I'm already so good at wasting time I don't have, did I really need another distraction?  A full-on case of buyer's remorse settled in.  It would slip so nicely into my purse, I thought.  So what? I thought.

This morning I returned my Samsung tablet.  As I left Best Buy with my cash tucked safely back in my purse, I decided that I'm still fascinated by technology, but I'm fine with being left behind.  Someday I may yet own a sleek tablet I can slip into my purse.  For now I'll save my money for something more low-tech, like sheetrock for our unfinished basement, or a new living room couch.  After all, when James Bond shows up, he'll need a place to sit.