Midsummer, from Ronald McDonald House

A note:  This is a letter that I wrote to friends and family about a week after Xander's operation in Philadelphia at the end of July this summer, which I thought might be good to post here as well.  Xander is now doing quite well in Chicago, by the way, and it's looking like he and Jane should be back in China by early October...

Quick quiz - what do Xander and I have in common with clowns, a dozen Shriners with jeweled fezzes, Santa Claus, Megan Shiel (New Jersey Super Miss, 2010), an Amish buggy maker, and about 450 guys on Harley Davidson motorcycles?  Answer:  We were all at the same party last Sunday!

The occasion was a Christmas in July party at Shriners Hospital, and most everyone mentioned above was there to deliver toys to kids who were there.  (The Amish buggy maker was the uncle of one of Xander's hospital roommates, which is a whole story in and of itself..)  Xander and I took the city bus there from our nearby digs at the Ronald McDonald house, just three days after his surgery and two days after he was discharged.

It was a fun party.  Highlights for Xander were lots of big gleaming motorcycles to look at, and a clown that caught a soap bubble and transformed it into a small glass bead that he could keep.  Highlights for me were people watching, being gladdened and amazed that Xander was getting around so well after surgery on both forearms, and being impressed by the generosity of so many different kinds of people.

We've now been in Philadelphia for just a day over a week, and I continue to be amazed and humbled by the generosity we've encountered.  We're staying at Ronald McDonald House, about a fifteen minute bus ride from Shriners, and every evening, a different group of volunteers comes in to give us a home cooked meal.  For breakfast and lunch, we're free to help ourselves to food from a restaurant sized refrigerator, freezer, and pantry.  Most of the staff are likewise volunteer, including a weekend manager who comes in for a weekly 24 hour shift.

And then there's Shriners, which is a hospital that is funded entirely by donations, and doesn't charge its patients for anything.  Ever. There's a very interesting positive vibe to the place.  This particular Shriners specializes in pediatric orthopedic and spinal cord injury care, which means that in the spectrum of things, Xander's surgery, even though it requires a couple of months, seems fairly routine.  In contrast, the two other boys in Xander's shared hospital room, both with scoliosis, were on their eighth and twelfth surgeries.

On the van on the way back to RMcD House, Xander and a teenage girl from the Bahamas that also had arm surgery had four of the five functioning legs of all of the passengers under eighteen.  All of the other passengers were staying at another RMcD House in New Jersey, and you could tell that they had all become extended family during their kids' extended physical therapy.  The talk was all in (Dominican?  Puerto Rican?) Spanish, but you could tell that the jokes were flying. One teenaged boy in particular, a double amputee, seemed to be the master of ceremonies, and was cracking up everyone else in the bus.  (Well, everyone else who spoke Spanish, that is...)

This isn't to say that everyone who is at Shriners is a carefree superkid gleefully overcoming adversity.  My impression is that most of the kids and parents that we saw there have numerous challenges to deal with, and are happy to have landed in a safe place where they can get some help along the way.  Still, it does put many of life's so-called "problems" into perspective.

So, as a final conclusion, yes, Xander and I are doing quite well, all things considered.  The surgery and the night afterwards wasn't particularly fun, for sure - let's just say that there are much more enjoyable things to do than wake up every two hours the whole night long to help your kid maneuver two heavy arm casts and an IV attached to his ankle so that he can pee..
Now, though, Xander is feeling almost up to his normal self, except that he's got the aforementioned casts to lug around for another couple of days.  He complains of a bit of soreness in his arms every now and then, but we haven't had to use the Tylenol 3 with codeine since the weekend.  His next appointment at Shriners will be to get his arms x-rayed, and if all looks good, the casts come off and we start the one millimeter a day process of bone lengthening.

We're settling into a routine at the House of Ronald, and have already had a good visit from Cathy, a good friend of mine from college.  We're also looking forward to more visits from my brother and family and my mom in the next week and a half.  Gifts and cards for Xander have also made their way here from various points around the country and worldwide, which have cheered him up a great deal.  I could (and probably should) go on and on about all the help and support we've received, but then this email would move away from the territory of an update and start sounding like an Oscar acceptance speech...

So, to wrap up, thank you all so much for your prayers, support, and just plain concern and caring.  The whole process has been much less difficult that I had worried it was going to be, and much of that is due to help we have gotten along the way - thanks so much!


-Dave and Xander