T+110: Fighting for Normal

This weekend, Sarah and I sold our low mileage 2006 Mazda sedan and spent $8,000 buying two electronic assist bicycles. 

Yes. You can read that again.  Go ahead.  We'll wait. 

Are we insane?  
Is this some kind of spur of the moment folly?    
Are we negligent parents?

And no.

And before you call social services and report us for endangering our sick kid, know that we did hang on to the minivan.  (Though we're hoping that it will stay parked at least four days a week.)
Sarah's new bike
Todd and the boys' new bike (click here for a better picture)

In the two years since Ethan was diagnosed, we put everything on hold, or at least tried to keep it spinning in the background, while we fought to help Ethan survive. Now that it looks like Ethan has come through the worst of it (knock on wood), we started thinking a great deal about how we get back to some of the things that were important to us before we got on this roller coaster.  

For me, that means getting back to bicycling on a regular basis.  Two years before Ethan was diagnosed, I started commuting by bike. In those two years, I rode a 20+ mile round-trip and 4-5 times a week  Riding helped me quit smoking and stay quit (up to a point), it became a stress relief, a time of enjoyment and reflection and got me into the best shape of my life. 

For Sarah, it means singing again with the Aurora Chorus, a fantastic Portland women's choir which Sarah loves. And it means a return to Sarah's interest in environmental sustainability and living a sustainable life. 

Before Sarah and Caleb left Minneapolis, we started talking about how I could get back on a bike.I recognized that, as much as I love cycling, it's a very time intensive activity.  I was always loath to let it pull me away from Sarah and the boys before, and I still hate the idea of 3-4 hour weekend rides while the family is hanging around the house or doing something else.  That's why bike commuting worked so well for me, it just fit right into my schedule with minimal impact on my time with the fam.  

Looking forward to coming home, I knew that I wanted to ride regularly, ideally with the boys.  However, while I was comfortable with the idea of riding with the boys into the city for Ethan's doctor's appointments, I didn't like the idea of pulling them in a kids' trailer behind me all that way.  In addition, I wanted to be able to get into the city in under an hour; something I can do when I'm riding by myself, but that would be impossible while pulling the kids.

Then serendipitously, I came across an article about a local congressman who had recently visited a Portland-based maker of electric assist motors for bicycles.    I mentioned the idea of an electric assist kid carrying bike to Sarah and her eyes light up and she immediately latched on to the idea. See, while we were away, Sarah's office moved from the Portland suburbs into town, and Sarah had been looking for a way to stop car commuting, but felt the ride would be a bit too long for her.

For us and the kids, e-assist bikes make a ton of sense.  We live in the burbs, about 12 miles from downtown.  We bought our house at the peak of the market, so we ain't moving anytime soon.  They allow us to ride together, and help shorten the suburban distances and ride times to more manageable chunks.   

We know that going mostly car free wouldn't be easy for a normal family living in the suburbs.  And we know that we're not normal and will never be normal.  But this is a change that very much reflects ideals, activities and practices that are important to us.  

The first day of this grand experiment showed just how challenging this might be.   On her first day of commuting, Sarah got clipped by a car.  She was going straight through a light and a driver that was turning left was sun-blinded and clipped her rear tire. Sarah is okay. But the back tire on the bike is akimbo, and we've called our bike guy to check it out. 

Caleb on the Willamette River at Oaks Bottom with downtown
Portland in the background.
For my first day on the bike with the boys, we headed up to the hospital for Ethan's weekly clinic check.  When we got to the hospital, I realized that I'd forgotten to bring a bike lock and so had to call upstairs and reschedule.  While I enjoyed the exercise of the 25 mi r/t, it would have been better if Ethan had gotten to see the doctor like he was supposed to.  But our new appointment time is tomorrow, so we'll check-in then.  And on the way back home, we stopped at Oaks Bottom Park and the boys got to run around the park and play on the docks which they wouldn't have done if we'd gone by car.   

Then when we got home, we had about an hour to have lunch and relax before heading halfway back into the city to meet a prospective new pediatrician.

As you can see, the first day was pretty chaotic.  Fortunately, Sarah came through with only a couple of scrapes and bruises.  She's shaken them both off and is ready to get back on the bike.

Finally, we had got some pretty good news from Minnesota this morning.  Last Monday, we drew blood for updated engraftment numbers, and got the results this morning. 

Ethan's 6/29/11 results were:
CD15:  93% donor
CD3: 12% donor

These results were:
CD15:  96% donor
CD3:  30% donor

I'd say that's a nice, healthy improvement.  Oh, how I hope the trend continues!!!

Thanks for checking in. 


Anonymous said…
orry for the bad news ie Sarah but glad she is bc up and trying again - and so glad you are trying to get back to a 'more normal' - just remember 'new' normals come in all shapes, sizes and definitions! :)

Sarah said…
Sorry to hear about Sarah but LOVE your bikes!! So glad to see the improvements in Ethan's engraftment numbers, too!!
Anonymous said…
Hello, I am an audiologist at the Univ of MN Amplatz Hospital. I was encouraged to view your blog by another Hurler patient that you met here in Minneapolis. They are in the process of getting hearing aids for their son and suggested that I ask what your son had received since they were so small and working so well. You can respond to me via my email if that is ok- jward3@fairview.org

Thank you for sharing your story.
Jennifer Ward