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

What Gives Hope

(Published first on PNN.com - the Personal News Network)

Note: I started writing this back in March - and finally find time and inspiration to finish.

I was at the doctor's office yesterday, it's a family practice so the patients come in all age groups, young and old, male and female. I was there for some funky female issues, nothing horribly upsetting, but still somewhat concerning. So, before actually being seen, I was OK, but feeling a bit apprehensive. And in walks this tiny little girl with her mother. The wee thing had to have been not much more than two years old, if that. (Rather like Cindy-Lou-Who, who was No Bigger Than Two - just as cute, if not cuter). She had this adorable little poncho and an adorable little purse. And her poncho hood was still on, which gave her a sort of Kewpie-esque /Snow Babies appearance.

While her mother checked in at the window, young "Cindy-Lou" toddled over to near where I was sitting, attracted to a toy house. " 'ouse, 'ouse", she said. I smiled and confirmed, "house!" Then, too soon, I was called in for my appointment.

My own appointment went smoothly enough, but even knowing my issues were most likely going to be OK, it was still nerve-wracking to be setting up further appointments for an ultrasound and then a biopsy. Once those dates were set I was ready to leave. And out comes little "Cindy-Lou", still no bigger than two, but even cuter than before. She sported a smile that was killer. And the energy between her and her mother was tangible and lovely.

And if you know me at all, you know our family's story - how the Young Prince has been battling liver disease, but at this very moment was healthy and in school (for a nice change). You also know that the Crown Prince was dealing with a new diagnosis of diabetes. In fact, at that very moment he was with his dad at the Joslin Clinic in Boston, having been called in on a somewhat urgent basis, based on the blood numbers that his doctor had sent them.

So our lives had been shaken, our family momentum had been thrown quite off course, and I was trying to be calm about every bit of it. And if you know me - am I ever calm, really? So, it was an effort.

But this little girl, this tiny sweetie carried a wave of pure goodness with her, it was hard to feel anything but happy in her presence. I imagine even still following her and her mom around, not just to observe, but to maybe absorb the good juju that she was blessed with. Little "Cindy-Lou" gave me a boost that stays with me even now.

Fast forward to June 9. Tom has been sick. He was sick in May with a GI thing (in the hospital for three days) He never really felt very well once he was discharged, he still had odd symptoms that brought us back to his pediatrician the very next day. Within a week he developed a cholangitis infection, and directly on the heels of that news, a cellulitis infection in his foot. Eventually the two antibiotics did their work, and he felt a little better.

Better, but not fantastic. His liver docs stressed that he needed to eat better, he'd lost maybe ten pounds in just a short time, so we struggled with that during the end of May. But he just kept feeling worse, and by early June he was eating even less. And on the 9th we were on our way to Boston, knowing he was probably going to be admitted for fluids and testing, and perhaps insertion of a feeding tube.

We were driving through Boston, I think just merging onto Brookline Avenue, when I saw this small gaggle of school children on an outing with their teachers. It was a rainy drizzly day, and the kids were all wearing the most damn adorable rain gear. Boys and girls alike, they were like little water-repellent jewels splashing their way through the afternoon. Polka-dot boots, striped slickers, brilliant little backpacks; the sight of them made me yearn for my old camera, and my old life when I used to take lots and lots of photos of scenes like this.

The reality is though, that those kids - just like little "Cindy" - have stayed with me. Seeing the utter naked joy that floated over these bright souls like little auras of hope was a kind of a tonic. A mini-salvation in the midst of real worry.

We perhaps laugh in our jaded adult ways, at the innocence of children. Not out of meanness, but sadness that we lost our innocence, and dearly wish for it back. But behind the laughter, we have hope. Hope that these sweet precious babies never lose that natural buoyancy of curiosity, laughter, and love. Hope that their goodness will rub off on us. Hope that somehow, life will get better, and even in the midst of the nastiest of nasty days, there are still good and sweet things in our lives that must be recognized for what they are.

Little blossoms of hope.