That’s Fritz (or a reasonable facsimile)

If you’ve seen Monty Python and the Holy Grail, you know the scene: The black knight keeps having body parts lopped off, keeps coming back for more, and is eventually left behind by his opposing knight, shouting “Come back here, I’ll bite your legs off!”

Well, that’s about where our trusted 1998 Volkswagen Passat is. An exhaust pipe fell off, just disappeared last week—and it now sounds like a diesel locomotive. The rear view mirror fell off the windshield, and I superglued it back on — three times. The key fob hasn’t worked for years, and now the locks are haunted — they go up and down on their own. There’s a mysterious water leak behind the driver’s seat. The gas cap door release control stopped functioning a few weeks ago, and I had to pry it open to put gas in.

The license plates expire on March 31. That’s the day I will donate the car to some poor unsuspecting charity, and we will begin a new era: Beth and I are going carless.

I’ve already signed up for Zipcar, a car sharing service, and between that and all the public trans options we have downtown, we should be fine. We’ll probably save some cash in the process. To be honest,  I’ve been thinking about retiring our Passat for ten years, ever since we moved to Chicago. But you know, I’m just irrationally attached to the damn thing.

We bought it when we lived on the Outer Banks of North Carolina, so it carries some nice memories of cruising up and down the beach road with the windows down, the moonroof open, and marine air permeating everything. Our salesman was an African-born man named Fred. I met him when I did an exploratory shopping trip on my own—he said my wife would love the moon roof. Didn’t have the heart to tell him.

The only model they had on the lot was white—not my favorite color—but it would be cheaper (and faster) than ordering one. I came home to tell Beth that I liked the car, and explained about the white thing. We couldn’t decide, so Beth suggested we defer to our magic 8 ball. Will we buy the white Passat? Signs point to yes.

Gus still lived with us then, and one reason we liked the wagon was that the doors swung very wide open—easing the task of getting Gus in and out of the back seat. The cargo area was really large—making it easy to load his wheel chair in back without having to take the wheels off. In fact, we did not sign the contract until I went through that very test with Gus at the dealership.

The year was 1998, and I was awed by the technology—it had a trip computer that read out mileage, mpg, time, and temperature! It had electric windows (my first car ever with those)! Automatic locks! An indigo blue lit dashboard! ABS! Five airbags!

Just over 183,000 miles later, Fritz—as Beth nicknamed him—has lived on the ocean front, in Urbana, Ill., and on the mean streets of Chicago. I know other Passat owners have had trouble with theirs, but ours has been a champ, and to be honest—except for the roar of the engine, the car still runs like a top, and just hums at 75 mph. We’ve had a lot of great road trips in Fritzy. But it’s time.

Outside of one short stint in Washington, D.C., when I relied on my motorcycle and my roommate Pick for rides, I’ve had a car my entire adult life. So it’s kind of weird to contemplate. I know I’ll adjust. I certainly won’t miss the insurance costs, the monthly parking fees, the repair costs,.

But I think I will miss Fritz.

A woman who teaches two-year-olds who have visual impairments had me sign a few copies of my memoir, Long Time, No See for her at the Vision Forward conference I spoke at last fall. When I was signing her books I had no idea she’d been diagnosed with an eye disease called retinitis pigmentosa when she was in fourth grade. She emailed me later to explain that she’d been able to see well enough to drive until 2007. Her eyesight continues to deteriorate, however. Last October she took medical leave from her teaching job, and she’s on a waiting list to train with a Seeing Eye dog.

When she got home from the conference, this teacher managed to convince her book club to read Long Time, No See, too, to help them understand the adjustments she needs to make now.

A number of memoirs have been written by people who lost their sight in adulthood, and it is extremely flattering to have this woman choose my book from all of them. Her book club meets this Monday, and they’ve invited me to come to Milwaukee and join the discussion. I’m looking forward to the trip to meet them all and introduce them to Whitney.

Another woman I met at that same Vision Forward conference happened to email me this week, too, with news about her six-year-old son, Bennett.

Bennett and his companion dog Journey.

I wrote a post about Bennett here last year after his mom sent me a thank you note for the Braille copy of my children’s book, Hanni and Beth: Safe & Sound. Her thank-you was so moving that I wrote her back to ask if I could share it with my blog readers :

Dear Beth,I met you at the Vision Forward Conference in Milwaukee this past weekend. I purchased your book, Safe and Sound, for my blind 5 1/2 year old son, Bennett.

My husband read it with him tonight, while I worked on homework with my 9 year old. Bennett was so excited about the book. He told me, “I loved that book you got me. It’s a true story mom. And no one ever writes true stories for kids about people who are blind like me.”

Thank you for writing this story and reaching out to children who can not see. Bennett has a Children’s Companion Dog and he said when the story started, he thought for sure it was about his dog Journey.

Thanks again. And it was a pleasure meeting you. Keep writing and we will keep reading 🙂

The email I got from Bennett’s mom this week came from the Children’s Hospital of Pittsburgh. Bennett had 2 cornea transplants in his left eye years ago, but both had negative results. He and his parents traveled from Wisconsin to Pittsburgh this week to have Dr. Ken Nischal, one of the world’s foremost children’s eye specialists, try a cornea transplant in Bennett’s right eye this time.

Currently, the cornea (the clear tissue that’s about the size of a dime and covers the front of the eye) is the only part of the eye that can be successfully transplanted. People who have macular degeneration, retinitis pigmentosa, or diabetic retinopathy, like me, have a disease of the retina. The retina is a thin tissue that lies in the inside of the eye and acts like the photographic film inside a camera. Corneal transplantation would not help those of us with retinal diseases, but scientific research resulting from eye donation could help future generations.

Cataracts, old age, poor eyesight, or cancer will not necessarily prohibit you from signing up to have your eyes donated after you die, and signing up to be an organ donor is much easier than you might think. A web site called Donate Life America provides a list of where to register in your state, and if you do decide to donate, make sure to tell your family your wishes as well.

Bennett’s mom says her son approaches each challenge with “a strength we never knew could come from someone so small” and requested I ask you blog readers to keep their family in your thoughts and prayers over the next couple weeks.

Thinking of you, Bennett, and sending all good wishes to you and your wonderful family.

That’s Ella–her brother Bryce is happy to have a sister.

This week brought some good news in the Finke extended family: Ella, who had been born to Beth’s niece Stacey and her husband Ryan prematurely, came home after a stay in neonatal intensive care.

In this day and age, one can say, “No big deal.” After all, preemies are common, we have folks scheduling births to accommodate busy calendars, we have people having extravagant baby showers and now—I understand—something called “sprinkles” for babies to be born after the first child.

It’s almost as if all this childbirth stuff is routine. I’m here to tell you: It ain’t. And to confess: Every time a friend or family member reports that they are expecting a baby, Beth and I hold our breaths a little.

Don’t get me wrong: We’re happy. But our experience with Gus nearly 30 years ago taught us something about birth: as commonplace as it is, it’s a ridiculously complicated miracle that should never be taken for granted.

For those of you who don’t know the story, Gus is our son. Conceived during an enthusiastic reunion after Beth had spent months at a blind rehab facility she nicknamed Braille Jail, he was the product of what I alternately describe as major contraceptive failure or unplanned parenthood.

Beth and I did not intend to have children—largely because she was diagnosed at a type 1 diabetic when she was seven. Diabetes had already cost her eyesight, and pregnancy can cause other very serious—up to and including fatal—problems for a diabetic.

Beth had a fantastic primary care doctor who ran a battery of tests, some of which could have revealed certain problems that for us, anyway, would’ve ruled out carrying through with the pregnancy. But they all came back clean, and he explained that if she/we wanted to, and if she/we committed to a bulletproof program to manage blood sugar levels, there was no reason we could not have a healthy baby without Beth suffering for it. And so we decided to carry on.

It was months of countless finger prick blood tests and weekly (at least) doctor visits. And everything checked out along the way. Babies of diabetic mothers tend to grow large quickly, and so we knew there was a prospect of an early birth by c-section. Indeed, Gus was delivered at just over 8 lbs. about three weeks early.

“Delivered” really doesn’t do the event justice. I was there for the procedure, and will never forget the sights and, frankly smells, and, well, let’s just say placenta is pretty psychedelic. Gus came out, the doctor said we have a boy, he gave a little squawk, and proceeded to try to leave the world as quickly as he had popped into it. I got a quick glance of him, they rushed him to a table in the corner of the OR, and it was a frenzy of activity and medical talk.

Beth and I had decided that we did not want to have more than one child, and that she would have a tubal ligation after the baby was born. Our OB/GYN, smartly and responsibly, said to us: “In light of what’s going on behind me with your baby, do you still want to go through with the ligation?”

YES! was our resounding, unified chorus.

Gus was given a 50/50 chance of making it through the night. Beth was in a pain-killer induced daze, but still had the wherewithal to hold my hand and say, “However it works out, we did everything we could.”

She fell out and I went home and sat on the couch, my view a tower of disposable diapers stacked in the corner of the living room, gifts from a baby shower.

Gus was in the neo-natal intensive care unit for more than a month. The days brought good news, bad news, ups, downs. I made multiple daily visits, Beth arranged rides to visit while I was at work, it was our second home.

Apart from our own drama, what I remember most is this: Gus and we had a lot of company in the NICU. Rows of distressed babies festooned with tubes and wires in incubators,  and distressed parents standing beside them. And unbelievably kind, capable staff—particularly the nurses.

We parents and doctors and nurses didn’t know a dang thing about each other but it was sort of like a college dorm. We got to know one another. We watched, with some envy, parents taking their babies home. We arrived to find a baby gone only to learn she hadn’t made it.

Gus, tough in his own way, proved to beat his odds. We eventually did bring Gus home, but only after learning he had a very rare genetic disorder that would leave him severely disabled. His difficulties had nothing to do with Beth’s diabetes.

It was impossible to understand. I saw him last week—27-year old Gus, that is. He’s doing swell in his little group home in Watertown, Wis., thanks to the good Badger and Packer fans at Bethesda Lutheran Communities.

I’d like to say all’s well that ends well. But it’s a lot more ambiguous than that. It’s still not really understandable.

One thing, though, that I’m sanguine about: When it comes to childbirth, our hubris can tempt us to believe we’re driving the bus. But we’re not. Best we can do is check the tire pressure, change the oil, and hope for the best.

Whether you believe in the wonders and complexity of biology, of God, or both (I don’t think they’re mutually exclusive), a healthy baby is one gigantic deal.

And I could not be happier for Ella and her folks.

The good folks of Saints Cyril and Methodius Catholic School gave us flowers. (Photo by Penny Wong-Matzelle)

I often write posts listing the questions kids ask me during school presentations, but I don’t always tell you how I answer those questions. Penny Wong-Matzelle has two daughters at Saints Cyril and Methodius Catholic School (SSCM) in Deer Park, N.Y., and this article she wrote for the Deer Park-North Babylon NY Patch about our visit to first, second and third grade classes there last Monday lets you in on how I answered one of them. “The most poignant question came a short way into the Q & A session from a small girl in her neatly pressed SSCM uniform.”Penny wrote.

The question that girl asked was, “What does it feel like to be blind?” I’ve been asked that question in other school presentations. My answer changes with my mood. When things are going well, I don’t notice my blindness much at all, and just shrug it off. That morning I’d woken up in a motel room, though, so the article said, “She went on to describe how it can be frustrating at times, because it just takes longer to do certain things and she has to remind herself to slow down and take her time to avoid fumbling…”

I love that Penny thought to mention that the girl who asked was so small, and that her uniform was “neatly-pressed.” It gives me such a great image. It wasn’t the only visual detail Penny Wong-Matzelle included in her article — here’s another one:

The enthusiastic students of SSCM each had questions burning in their minds and the only thing Mrs. Finke may have missed out on was not being able to enjoy seeing the number of hands that flew into the air when she announced it was time for some Q & A.

And then there’s this:

Mrs. Finke’s demonstration of how Whitney works to guide her to the nearest exit brings nearly every student quietly to their feet as they lean forward and crane their necks to watch the pair make their way down the hall and back, stepping easily in stride with one another.

Without being able to see the audience during our school visits, I’m left to assume/imagine/hope the kids aren’t napping. I’ve had parents and teachers tell me their kids really liked our presentation, but I’ve never had anyone spell out visual details the way Penny Wong-Matzelle did in this story. Thanks, Penny – very fun to imagine a bunch of first, second, and third graders leaning forward and craning their necks as Whitney leads me out of a classroom!

That’s us at Daniel Street School in Lindenhurst; clearly, Whitney is ready for her close-up.

Whitney started every presentation we did on Long Island this week with a whine and a moan. She wasn’t scared of the kids. She wanted to play with them!

Who can blame her? The kids were cute, cute, cute, but somehow Whitney managed to settle in and lie down by the time we got to the Q&A part of our presentations. Hearing them ask in those adorable Long Island accents made me want to gather them all up and play with them, too. Some examples:

• What happens when you have to go down stairs?
• Which is your favorite dog?
• How do you eat ice cream?
• How can you write books if you can’t see??
• How do you plant?
• How can you use the remote to watch TV if you can’t see?
• But what if the ice cream is in a cone?
• Can your dog have babies? Why not?
• How do you know which dog is your favorite if you can’t see them?
• How come you are so pretty?
• How can you drive?
• Dr. Who started in 1963 and you could still see, did you ever watch it?
• How come you have to change dogs so much?
• How do you know what your hair color is?
• Is your dog with you all the time when you’re at home, too?
• I liked the Fourth Dr. from the planet Gallifrey and he had a robot dog named K-9 and I liked it when Nyssa was on, too, so which one was your favorite Dr. Who?
• Can a Seeing Eye dog work with more than one persons?
• How do you feel if you’re blind?
• How do you know where your dog is if you can’t see her?
• What if you had a glass and you were walking to the couch and you went to sit down and your dog was there and you got to the couch and you dropped the glass and it broke and got all over the place?

Whew! Whitney and I spent three entire school days with students on Long Island, and trust me, we both slept well afterwards. No wonder teachers get the summer off. They need it!

After my presentation to one of the kindergarten classes at Harding Avenue School in Lindenhurst on Tuesday, a boy raised his hand to let me know his dog is blind, and that his family is teaching her to go up stairs without being able to see. I’ve had Kindergartners tell me before that they have blind dogs, blind friends, even blind parents. I assume they’re telling me a story, and I usually comment on how lucky they are. I responded to this boy by asking, “Are you a Seeing Eye kid, then?”

The kindergartner liked that idea, and his teacher asked if he might want to tell me why he has to teach his dog to go up stairs now. “We were living with our Grandma,” he said, explaining they just moved into their own house. “It has lots and lots of stairs, and it’s way, way, way up high.” That little boy wasn’t just telling me a story. Their family dog is old, and she really is blind. His family’s home was destroyed by Superstorm Sandy in 2012, they’ve finally just moved into a new house, and it’s on stilts.

During breaks from my talks, the school principal and teachers explained that Harding Avenue has 400 or so students, and 163 families from the school were displaced by Superstorm Sandy. Outside of this little mention of the new house way, way up high, though, the resilient kids never mentioned that storm. The temperature was in the sixties the day I visited, the winter snow had melted, and after I answered all their questions and took Whitney’s harness off so they could rub her belly. Then they ran outside. Recess!

PS

Mrs. Antonelli’s 2nd grade class at Harding School came up with a way to thank me that I can hear, and that you can see: