The Kindness of Strangers

I'm amazed really, at how much it hurts. Each time that Tom goes through something, and after he's getting better, and the care-giver adrenaline subsides, I'm left with a wound. It hurts, and each time it surprises me at the severity and at the recurrence. 

Oh, and the timing. 

That's the kicker. It's been a little over a year since Tom had his transplant, and I think we all thought that most of these sorts of days and worries would be behind us. Yes, we expected some new worries; the rejection question, and his susceptibility to illness would be the big ones. But this other stuff, the CVS* type of sickness, or whatever it was that plagued Tom from November to March and caused him to lose over 30 days of school this year, no one quite expected that.


Yet, here it is, back again, for a brief stop or an extended run,  or something new is going on.


He's fine now, sort of. The Make-A-Wish trip/getting ill thing was horrible (and the Memorial Day weekend illness was a bit scary), but he made the best of it and at least got in the last day of E3. Fine for the rest of the time, and for the trip home. And he was fine for his last week of school/finals, and fine for his first week of summer vacay, but last night -  he vomited.


It's makes me sound a bit mad - getting all dramatic about a puke session. But when this has happened again, and again, and again, and again, and again, and then wethoughtitwasoverbuthegotdreadfullysickinLA - the drama is already built in.


Last night was hopefully a one-off. It could have been anything. Food at Chunky's didn't sit well? He was overtired from two sleepovers this week? Who knows. And he felt better after that one vomit. Been OK today, just a little tired.


And we've mostly recovered from the LA thing, that wound is healing. 


But I am covered in bruises. Not the cool kind I used to get at the dojo, although I feel like I must have earned some sort of new rank by now.  


These bruises are quite invisible, but just as real. These ones though, I didn't expect. I'm really sucker-punched, each time.


However...


I'm also hugely and amazingly amazed at the "kindness of strangers" Did I say amazing? I'm having a hard time processing it still.


Now I would imagine that an organization that knows they are dealing with a Make-A-Wish recipient is going go out of their way to please the kid. That makes sense. But what happened with Tom - I still don't know how to describe it.


Well, he's been getting stuff. Lots of stuff. I was putting pictures on Facebook, but I'm not going to do that anymore, I don't think. I don't appreciate these gifts any less, but I'm thinking it will look "showy". We pretty much expected these items, because all the gaming folk showed Tom stuff and then promised to ship these items out, but it's almost too much.


Don't misunderstand. This isn't a criticism of the gamers. It's incredibly cool. And we are receiving things in the same spirit, we get why they are doing this. 


But when I consider all this generosity, I'm still at a loss to describe how surreal it all feels at times.

This Reads: "We'd like to thank Tom Williams and his family for supporting our family. Bethesda Softworks" Yes, really.

But for now, I'll leave it with "humbling."


*Cyclic Vomiting Syndrome

Persistence - and Passion - Pays Off

A year ago today, Tom had his liver transplant. We celebrated with just the four of us last night at the Olive Garden, one of Tom's favorite restaurants. I'm sure his docs would have been thrilled to see him eat two bowls of chicken gnocchi soup, most of his steak and potatoes, three bread-sticks, and dessert. We certainly were thrilled.

And how did he celebrate today? Well, the kid had to go to school. They sort of require that.  : )
But Tom was able to realize a big dream, of having a huge assembly/presentation at his school with (I believe) most of his sophomore class, and many seniors, and perhaps some juniors were there too. Lots of kids.

Tom is stubborn. He annoys me greatly much of the time with his persistence about stuff. But I've known for a while that this quality was going to serve him well, as it did today.

For this assembly, Tom had lined up quite a few speakers. He had Mike Slama, a man who received a heart transplant a few years ago, talking about how lucky he has felt every day, and how happy he was that Tom was able to share in that same feeling of gratitude. Also on the agenda was Sam Scott, one of the program managers of the American Liver Foundation, who spoke of liver health, and had some stark images of healthy and sick livers. At the sight of  very diseased, cirrhotic liver - I heard one student exclaim, "oh please change the slide" - yeah, it was pretty gross. 

Also speaking was Nancy Erhard, a woman whose son died several years ago, and Nancy and her family made the difficult, yet easy decision to donate whatever was needed from her son Bo. Nancy speaks at functions often about Bo's story, and she has worked with Jamie Redford (Hollywood legend Robert Redford's son) through the Share the Beat organization.


We also heard from Nick Giordano, a man who has run 11 marathons, and who himself was diagnosed with liver disease. Nick was chairman of the Run for Research Team this year, and at the very end of the day, he graciously and humbly gave Tom his marathon medal.

Even at a younger age, Tom was a fund-raiser. Here he was preparing to ride the Pan-Mass Challenge for Kids

Tom, recovering from his first surgery, age 12

And because of Tom's persistence, he was able to line up Matt Noyes, the meteorologist for NECN. We talk about Matt a lot, because he has been such a tremendous support not only for our family and for Tom, but for the New England chapter of the ALF. Matt is a very, very busy guy and he's also got a beautiful young family to take care of too. But this year, the great staff at the ALF convinced him to run in the Boston Marathon. Matt has been involved with the ALF for several years, as MC for the Liver Life Walk. He's also involved in other charities as well, and his enthusiasm for life is contagious and inspiring.


And of course, there was a nice plug about the upcoming Liver Life Walk by Hung Pham, an ALF staffer.


It takes great persistence to make all this happen. Of course, I took care of a few emails and phone calls, but Tom's passion was the driving force to bring this event alive.


It also took a lot of passion for a shy-ish 16 year old to get up in front of an auditorium of peers and tell his own story, starting from first diagnosis to his surgery a year ago. He spoke of various procedures he endured, holidays that were basically ruined, too much time out of school and other snapshots of how his illness impacted his life.




But he also spoke of his friends, and how much they meant to him, and how he appreciated their support. And Tom spoke about Rachel's Challenge, and how by either joining him at the Liver Walk, signing up to be an organ donor (for those 18 year old students), or just being more aware of others' suffering - can answer her challenge and "Start a Chain Reaction" of making life a little bit better for someone other than themselves.