After Phyllis resuscitated me from my state of shock, she proceeded to tell me about all the fun she and Sam had been having in between baths. In the morning, after tutoring, Sam painted with shaving cream. You put the shaving cream on the table and smooth it out. Then you add paint to the shaving cream and swirl it a bit. Then you put paper on top of the shaving cream. You scrape the excess shaving cream off the paper and then let the paper dry. The result is a really pretty water color type painting and an incredible sensory experience for all.
After Phyllis left, Sam wanted the gift I brought for him. I drew in a deep breath, counted to ten and told him he could have it after his second bath. No sense waiting around for the inevitable. Might as well take the bull by the horns, while I have all my best nurses around to help me. Nurse L was busy with another patient so my good friend Nurse D lent a helping hand and some good cheer.
Sam just chatted through the entire prep time without a care in the world, hopped into the special oil/water combination to wash all the toxic sweat from his frame and get on with his day.
I let my breath out once he dried himself, removed all the tape and the aqua guard and dressed in his second outfit of the day. It is getting hard to find something that will hold Sam's interest for more than a few minutes, let alone more than a day. I had gotten him a CSI DNA evidence kit that would allow him to build a 3D strand of DNA. Sam thought it was so cool.
At first we had no idea how to assemble the DNA and the instructions were not all that clear (heck, who are we fooling, we never really found them and sort of just figured it out ourselves, but we looked for a good while).
Once we figured it out it went really smoothly. Sam picked out the genetic pattern from one of the many cards and we set about building it. Sam would assemble the matched proteins and hand them to me to assemble.
"Why's that, Sammy?"
"Well, she's sort of the brains of this operation and you are sort of the creator of fun."
I didn't know whether I had just been insulted, complimented or both. It sure felt like I'd gotten hit going both ways with that one, but I nearly laughed myself silly inside at the thought of those words coming out of his mouth. He's an amazing child, this one.
Then I tried to explain that DNA is part of what caused him to have leukemia and would also be part of what would help him get strong again. And without missing a beat he took my legs out from me and punched all the breath from my body.
"It also might be what causes me to die."
I couldn't deny it and couldn't be silent as much as I just wanted to stand there in awe at his insight and understanding. I also just wanted to shed all my tears at his potential truth.
"Yes, Sammy. That's true, but you've been so strong so far I believe your DNA will help you get better. Besides you promised after all the times in the hospital having to wipe your behind that you would help change my pull ups when I'm 95."
"Ug, Dad, do I have to?"
"You promised. Maybe if you're lucky I will still be able to do it myself."
"I sure hope so."
Potty humor will lighten up any deep and dark conversation. Thank God for potty humor.
"It's six. Shouldn't we be getting ready for my third bath? We should probably swish while I'm in the bathroom too." Who is this child? I swear he's a thirty-year-old man caged in a seven-year-old's body. When we finish each bath he's a pro at calmly peeling the tape and aqua-guard from his skin, drying off and carrying on with his day. I am in awe.
Afterwards Sammy ate two more orders of vanilla yogurt and cheerios (sorry, folks, I think hamburgers are out for a while). It's only day three. Who knows what hell we'll face in weeks two and three? I still have my amazing son to cherish. He's still his happy self as all these chemicals drip into his incredible system. He still shines from a light that burns so brightly deep within him. He admitted today to one of the child life specialists that he likes it here because he doesn't argue with his siblings. It's scary to think that this place has become a safe place for Sammy. On the other hand I am so glad that this place has become a safe place for Sammy, because we have to be here a lot and he might as well enjoy this alternate reality if it is his dominant reality for quite a while. Sammy teaches me so much each day.
Thank you all for your blessings and love. We couldn't get through this without you all. You all help our strength equal Sam's incredible inner strength, and for that I am eternally grateful.