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...
Touching a shark!
And so we continue on, seeking the light, finding the fleeting moments of joy.
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." 💜
I wish this was perfect for you all too. It only seems fair. But, of course, all of this is anything but fair.ReplyDelete
Thank you for sharing these thoughts, wishing you a wonderful last night of Hanukah.ReplyDelete
Oh to find a Working magic wand there in the Magic Kingdom...ReplyDelete
You are in our thoughts and hearts and we are wishing on stars...
So much love your way.
Oh how I do so wish that this was not happening to Sam or to any of you. My heart breaks for you all, and yet I, along with everyone else you touch, am inspired by all of your family's strength and love.ReplyDelete
Tell Sam that Asher wants everything to be perfect too in life, he gets very frustrated too. Just so he knows that's how 8 year olds feel, and his buddy is right there with him.ReplyDelete
My women's Rosh Chodesh Prayers in Tel Shiloh group prayed for Sam and all of you. May G-d give you health and strength.ReplyDelete
Wonderful memories should last forever.
Another excellent piece of writing and generous sharing. What an amazing journey. Your work is an excellent example of how to use words to honor love. Thanks as usual.ReplyDelete
I wish you could all experience the hope and strength of that August visit again.ReplyDelete
I am thinking of y'all all the time. You are always in my thoughts and in my heart.
I'm glad there are some moments of light. I pray for more of them, for Sam's sake and for yours.
Hi Sam: So, you went to Disney World again! What was your favorite part? did you see any people walking around eating those gigantic turkey legs and wonder why on earth they like them?ReplyDelete
My family was at Disney during Hannukah a couple of years ago. At our hotel, they had a menorah in the lobby and asked our family to make sure the candles were lit on the right days. It was funny because we were walking around the Magic Kingdom and it was a Friday. it was super decorated for Christmas, but every time we saw some dad wearing a kippah, we wished him and his family a "Shabbat Shalom!" And the family would give a huge smile and wish us a Shabbat Shalom also. ----- From your mystery friends in Ohio, the Lipkin family
These blogs are Sam's real magic wand! You are blessing us all, lighting another candle every time. We are standing by, praying by, "wow"ing by, the real Sam has my heart, I only really WISH I could give him mine.ReplyDelete
hugs and strength to all of you. much, much love.ReplyDelete
On the last day of chanukah im davening for miracles for your family. That you all have the strength to get through this difficult time, and that sam should be as comfortable as possible, and that your family makes the best memories possible for everyone, and of course the ultimate miracle, which can only come from Gd.., You should all be blessed with much nachas and simcha from eachotherReplyDelete
i've been a fan of sam (and the rest of the clan) for a little while. a sheepskin helps a great deal on a wheelchair, and might even be more comfortable for him on other surfaces as well. hoping for strength and love for you all...ReplyDelete
sending prayers and love from Israel. as I have written before, I really don't know what to write, but my heart is aching for sam. much love always.ReplyDelete
I hope you know that Sam has influenced so many people in so many ways. You can't possibly know who and in what ways. I remember an 8 year old named Akiba. She was my favorite patient ever. She had AML in a time before transplants. I think of her often, 30 years after her death. She taught me so much about taking care of children. She taught me how to be a better doctor. She taught me how strong and all-knowing children are. Few people make such a difference in the world, even when they live until 100. Sam is blessed to live such an important life. I pray for all of you.ReplyDelete
I have to second that thought. Sam has made such a difference in so many lives. There is something so special about it. It feels like he belongs to all of us. Always praying for you.ReplyDelete
Hi there, I've been following this blog through a family friend... and on the same day as your last post, I saw something on Upworthy about a leukemia treatment for a little girl. I read a few details (she had a different type of leukemia than Sam, for example), and you're working with the best doctors, who may already know about it and it probably can't work... but just in case, can I post it?ReplyDelete
The headline's really sensationalized. And it totally might not be applicable to Sam. But I wanted to put it out there because something in the back of my head told me to connect the dots. Wishing Sam and your whole family comfort and good moments among the hard stuff... and refua shleima to every possible extent.