The Routine

One thing I have to do for a nurse to come in and help take care of Brennen is document the routine. Here's the evening routine:

[Starts around 8:30pm]
Snack (200-500 calories if possible for weight maintenance)
Medicines
Brush Teeth
Remove body brace (clean brace with rubbing alcohol)
Resporatory Treatments: Vest and Nebulizer
Remove foot splints, support socks, and compression bandages
Undressing/Toileting
Shower
Back in chair
Nasal Rinse
Nasal Spray
Put in bed
Dress for bed
Physical Therapy
Bandage face (prep for nasal mask)
Put on Nasal mask/chin strap
Position for sleep (1 pillow, 1 blanket, 1 rolled up towel for legs, one pillow under back, cervical pillow under head
Turn on night ventilator and adjust to stop leaks
Adjust ceiling fan and blankets for comfort
Lights out!
[Between 10:30 and 11:00]

Next time: the morning routine.

Week of Aerin

To honor Aerin's 11th b-day, our digital picture frame is featuring Aerin for the whole week. Over 300 pictures of and by our girl. She wasn't properly thrilled.

More Birthday Highlights:

For her party on Friday, Aerin took 6 friends to see Rango, then to California Pizza Kitchen, and then to Sweet Factory. On Saturday, her actual b-day, Aerin opened her family gifts, then went shopping with Mom to spend some of her $. Tonight, I helped her spend some of her Amazon gift card money (mostly for manga, but also, oddly, some scratch-n-sniff pizza stickers).

Aerin said yesterday, "Dad, I'm almost 12!"

Grief

Grieving is an innate coping process. Attempting to suppress, ignore, or circumvent it exacts a high price. We grieve not just for death, but any major loss, including loss of possibilities. It is common for the parents to grieve when their expectation of their child's possibilities gets radically altered.

When my oldest son was diagnosed with Duchenne Muscular Dystrophy in 1988, I went through a year long grieving period with a lot of time spent in denial (hoping somehow that the diagnosis was wrong). Also, I couldn't talk about it with anyone but my wife. It was just too raw and tender. When acceptance came, it came rapidly, though, and it was such a relief to be able to talk about it with others. It helped me cope, and so many cared and wanted to be there for us.

Progressive and long term conditions offer multiple grieving points. For Duchenne, in addition to diagnosis, grief can be triggered at the loss of the ability to walk, loss of the ability to eat independently, the need for respiratory support, and other major transitions. This applies not only for the family, but for the sufferer.

Yesterday, a family friend died. Simultaneously, I felt grief for our friend's death, but also anticipatory grief for my son. We don't know how long my son will live, so the anticipation was for an event hopefully far off, but nevertheless it was real.

I thought of my Saviour, a "Man acquainted with grief", and I knew that grief, like so many things, is not just inevitable, but necessary. It comes because we love and care for others. It is part of healing.

50 Musings

Turning 50 confused me. Was I supposed to feel different? All I felt was unreality. How could I be 50? How could my oldest child be 25? How could I have been married for more than half my life?

Some more observations on unreality:

• Maybe amnesia has set in, but life seemed simpler when the kids were small. An idyllic haze surrounds memories of poor, married college life.
• I knew everything when I was younger. Now I know a few things.
• Watching my adult children make their own choices and live their own lives is terribly rewarding, but I feel like a spectator.
• I have developed a "healthy" paranoia about staying relevant and vital in the workplace.
• How come I still sometimes act like a child in my marriage? Shouldn't I have figured this out by now?

Well, I guess I'm not done yet.

Tribute To An Old Workhorse

I am always a generation or three behind getting the latest gadgets. My friends have their Kindles and Nooks and iPads, and I have ........ [drum roll please] .......

My Dell Axim X5. A Pocket PC. From 2003.

Yes, it has a blazing fast 300MHz processor and all of 32MB of RAM. But with SD and CF slots, it can hold whole libraries. It's also an MP3 player, a voice recorder, and a whole lot more. Heck, you can even edit Word docs and Excel spreadsheets (If you're crazy enough to do that on the 240 X 320 screen). But the best part is that the battery will (still!) last all day. No, it doesn't have WiFi, though you can add that, and even browse the web.

Doomed by being ahead of its time.

It's been my faithful eBook reader for 7 years, and I pay it tribute! Now, when will it die so I can get one of those cool new gadgets?

Cylinder O' Smell

One of the unwritten rules of life is the Cylinder O' Smell. It works like this:

Each human being is encased by an invisible 3 ft. (1 m) cylinder. Any smell, good or bad, emanating from a person should not be detectable outside their Cylinder. Very simple.

There is a good reason for this rule. Inside the cylinder is personal space (yes, the size of the cylinder varies by culture). Outside is public space. You invite people into your personal space, smells and all. Assaulting the public space with your odors is an uninvited invasion.

Note: The Cylinder O' Smell is about odor and not about environmental allergies, which are a different discussion.

Interestingly, this rule applies equally to perfumes and gym socks. Some examples:

• You enter the lobby of a building and are nearly overwhelmed by the receptionist's scent enhancement (a mix of perfume, hair spray, body spray, and makeup) from 30 feet away. Bad
• Someone uses spray underarm deodorant in the locker room. Bad
• Mr. Evil (but, to my experience, never Miss Evil) wears their unwashed non-scent suppressing gym clothes. Very bad
• You wear subtle perfume/cologne and someone has to get real close to check it out. Sounds good to me.
• You nuzzle your S.O.'s clean hair. It smells wonderful. Very good.

You get the idea. The exception to the Rule is when everybody smells that way (hunting trips, marathons, makeover parties, etc.)

Next week: The Cylinder O' Sound, or headphones and earbuds.

Last Line From CNN Article on Facebook Outage

Why is it that the last line of news articles are often the best?

From a CNN article:

"OPB BREAKING NEWS: Facebook is down," read a message on Oregon Public Broadcasting's feed. "Worker productivity rises. U.S. climbs out of recession."

Back to Weight Watchers

I have been attending Weight Watchers again for about a month, after a year and a half hiatus. Even though I exercise regularly, my weight had crept back up. So far, my weight loss has been modest, but I am so happy that my head is back into it.

This works on so many levels

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Es gibt einen Idioten

Train drags half-naked mooner along tracks

My Dirty Little Secret

To avoid full mental meltdown while shopping, I play a game called "Fashion Disaster". Here are the rules:

• All people I see are divided into three categories: Exempt, Good Fashion, Fashion Disaster
  
  
• Exempt: Look like they are not trying to "make a statement". In its simplest form this consists of jeans, t-shirt, and healthy skin and hair and the appearance of spending no more than 5 minutes getting ready to go out. This is the highest, best, most exalted category. How long it actually took to achieve this look is anyone's guess.
  
  
• Good Fashion: Looks like they spent some time on their looks, but it works. Their hair style works with their facial shape. Their hair color is natural, if not original. Their clothing and shoes work with their body shape. They aren't a walking cliche.
  
  
• Fashion Disaster: Everyone else. Though the possibilities are effectively infinite, examples may be educational:
  
  The only look more pitiful than this year's cliche is last year's: Exposed bra straps. Distressed jeans. The homie look. Etc.
  
  Really tight low-waisted jeans worn with flat shoes make the wearer's legs look about 16 inches long.
  
  Wide hips and skinny legs are not well served by tight pants and stiletto heels. "Does this make my butt look big?" Yes.
  
  Muffin tops = bad.
  
  Thongs should not be worn under sweat pants. Ever.

Sorry to expose my dark side.

Public Service Announcement

Drivers beware: It's deer-mating season

Call Me Clyde

Runners of Unusual Size (ROUS's) are called Clydesdales or Athenas, depending on gender.

Here's the world according to Clyde:

• Shoe companies assume all large runners hulk around on flat feet and need beefy motion control shoes. I have high arches and so require a neutral cushioning shoe. I have only found one neutral cushioning shoe (the NB 1062, discontinued of course) that has heel cushioning that can take the tonnage. If you are a high arched Clyde, please share what works for you.
• Most Clydesdales are mesomorphs. Big shoulders tapering to narrow(er) hips. Then there's me. Years ago I earned the family nickname "The Cylinder of Flesh". One size from shoulders to waist to hips. It was true when I weighed 300 pounds, and equally true when I weighed 200 pounds. I lift weights, but my shoulders, though stronger, remain narrow, sloping, and bony. However, to misquote a running cliche: "You don't run on your shoulders."
• Most entry fees include a shirt commemorating the race. Apparently XL for race shirts means anything from Medium to Large, but not including Extra Large. Always order a size up!
• Someone who shall remain nameless packed the clothes for my very first race back in 2007, accidentally including a child's XL shirt. Form fitting clothes on a big guy look even better drenched in sweat. Always pack your own gear!

Sorry if I spoiled your appetites with that last mental image,

Clyde, aka JeffTheTwoThirds, aka Me

PeeveDay

It's Jeff's personal PeeveDay, so here's my top 6 running raceday peeves:

6. Getting lost on the way to the race (ok, usually my fault)

5. Races starting late

4. Traffic jams during the race

3. Getting lost during the race (not my fault!)

2. Not enough bathrooms

1. Walkers who start in front of runners

Actually, only the last two are very common. Maybe if I were more patient.

Recollections

Between the wild turkeys and the red-tailed hawk my hat started to drip.

Each Saturday morning during the Summer and early Autumn of 2007 I made my "long run" in preparation for a marathon. In July I ran around the neighborhood. Six or eight miles. But, by August, it had grown to 10 miles.

Ten miles was enough to run to Coyote Creek Trail, run some of the trail, and run back home. Three miles to the trail, two miles to the wild turkeys' favorite lounging spot. Turn around and run back: ten miles.

Each week I ran a little further along the trail.

To run 12 miles: Pass the turkeys. Pass the park where the wild pigs dug up the grass. Pass the water ski slalom course, with skiers stretched out flat to the left, then flat to the right. Run a few hundred feet more and see the pelicans! For a few weeks a flock of large white pelicans visited the fishing pond next to the course. What majestic birds! Around this point my running hat starts to drip from the end of the bill. One drop every three or four footfalls. I ran past the pelicans and through a more heavily wooded section and turned around at Coyote Ranch. Each time I would take note of the warning sign about rattlesnakes and mountain lions.

In September and October the runs got long: 14, 16, 18, 20 miles. I just kept going further along the trail. There was so much to see.

Past Coyote Ranch I had to cross the creek in two places and usually got wet feet. Then past the old quarries, now wildfowl refuges. Ducks. Geese. Herons. Along this section a bobcat gave me a dirty look. The golf course was the midpoint of my 14 mile run.

To add a couple more miles I would go past the golf course, past the radio controlled airplane club, gawking as I ran, to the 101 undercrossing.

For those few 18 and 20 mile runs, I would continue under 101. The trail enters grassland with occasional clumps of sycamore and eucalyptus, and passes by more bird sanctuaries. Cross a wooden footbridge and there is that stretch of trail owned by the red-tailed hawk. This marked my farthest point. I remember the hawk effortlessly passing over the trail about 12 feet up as I labored to my invisible halfway mark, turned around, and began the long run back.

Summer Reading

I love to read, but don't always get much time. This summer I am treating myself to mostly Newbery Winners and Newbery Honor books. Here's what I have read so far:

Harry Potter and The Deathly Hallows*

Princess Academy by Shannon Hale*

Silent To The Bone by E.L. Konigsburg

Incident at Hawk's Hill by Allan W. Eckert

Holes by Louis Sachar*

It's Like This, Cat by Emily Cheney Neville

Skellig by David Almond*

Kit's Wilderness by David Almond

Interworld by Neil Gaiman and Michael Reaves

The Headless Cupid by Zilpha Keatley Snyder

Afternoon of the Elves by Janet Taylor Lisle

The Thief Lord by Cornelia Funke

* - favorites

Ding-dong ditch?

Cops bust man for ringing doorbells naked in San Mateo County

Grueling morning, but ...

Brennen had an appointment at Lucille Packard with his pulmonologist this morning. It was a grueling morning, because Brennen got really nauseated on the way to Stanford, then we had to wait forever for his bloodwork. However ...

His blood gas results look great! And he says, aside from the nausea which passed, that he feels good again. And the bridge of his nose has healed, so he is having almost no mask problems at night.

My frustration has been that he has been up and down since last September, but he is on the upswing again.

Can't wait 'till she gets her drivers license ...

Texting Teen Unaware As She Falls into Sewer

And it's not October ...

Drunk badger disrupts traffic in Germany