Wishes

If you will recall, we spent a magical 36 hours in the Magic Kingdom in August. It was right before the transplant. Sam was feeling really really good. Our spirits were high. 

There was a very quiet cloud over that trip. We didn't speak about the dangers of the transplant to the kids. We didn't voice our deep worry -- would this be our last trip together?

Well...it wasn't our last trip. But it was the last one like that. 

When Sam asked to go back to Disney, I know that what he was really asking for was a rewind back to that August day when he felt so well, so strong, so full of hope. 

There's magic here for sure. 

But not the kind that can turn back clocks. And so this trip is so very different and so very difficult. 

Sam is weak and uncomfortable. He's so thin I can see every bone -- even sitting in a wheelchair becomes uncomfortable after a little while. His intensely high expectations are often not met and he has developed some odd fixations that are exacerbated by his emotional state. He wants things to be perfect-- and of course they are not. It's so difficult to manage the expectations of a "normal" 8 year old...how to manage them now? We are constantly stymied and saddened. 

However, there are bright spots and we cherish them (and photograph for posterity of course!) as they come...

Hogwarts Express...

Choosing a wand....he chose You-Know-Who's wand so he's making an evil face:

Catching a lizard - these guys are everywhere!

Winning an arcade game!

Touching a shark!

A glimmer of Sam-ness came through when he wanted to do crayon rubbings of the hotel lobby floor (we had seen others doing this, and it seems like a thing here). Our friend Jason sat down next to him and met the real Sam...for just a few moments. Because he's truly not himself. He doesn't talk a lot, and he doesn't share much of how he's feeling. He doesn't want to meet new people or even talk much with the ones he knows and loves. But every so often we see his light shine through. 

And so we continue on, seeking the light, finding the fleeting moments of joy. 

(Lighting candles on the balcony of our room)

--

There are some incredible things going on right now in Sam's honor. I'm writing from my phone so I can't get all the links together for you but there are some amazing fundraising efforts going on to help in the fight against childhood cancer.  Links available on my Facebook page (which I think is public enough or you can just friend me). All I can say is "wow" and "thanks" -- two of my favorite prayer words. When I return home I will find the words to properly thank the Make A Wish organization, our Wish Granters, and everyone who helped to make this trip possible. Until then -- again, I will just say "wow" and "thanks." 💜