Coming To You Live..

From my bedroom. 15 feet from Kris'. A place where he spends the majority of the day. After spending the entire day at City Of Hope yesterday hooked to a bag of hydration, he landed home. And weaker. The weakness didn't come from the body, although losing over 45lbs in the last 7 months, it's only a given that he's weak. When I arrived home he was sitting on the couch. As I was unloading groceries he sat watching me, and would give me his little side dimple smile. It wasn't until he began to speak did I realize....hmm...something's wrong. Hearing Bill and Kris' side...he was utterly exhausted! He sleeps about 20 hrs a day right now...so the trek throughout that hospital pretty much did him in.
As he asked me why the food I was cooking was so loud (sautéed homemade turkey meatballs in olive oil) I said "Honey, do you want to lay down?" His reply...I'm okay mom, I'd kinda like a bite of pickle.
After a couple of bites he'd ask to head to his room.
His counts are at 1.4. His platelets hovering in the 120's. Losing another 2 lbs.just this week.

My warrior mode in full force. I must force feed you. I must monitor output, and input.
Finding out he'd fallen at their place in LB right before his Dad picked him up for doctors.
Bill and Kris waiting to tell me, knowing I would freak. His bony side bruised.

I made my way back to the pharmacy this morning while my sister came to sit and hover.
Shaking that place again, because they NEVER have the full quantity for him. Three meds he takes are very important. They are keeping him alive. And yet, VERY expensive. And so they don't stock them.
As I made my way back to the rows of seats to wait for his name to "Lightup on the board" and realized that things like this, and explaining over and over to workers are making me a hard soul person. One I'm not proud of. Both clerks I dealt with today crawled so far under my skin. And yet, I calmly explained the process. Carrying my summary. Asking for the pharmacist. Smiling through the shit storm. To finally lose my cool and aggressively explain my reasoning. My full name. My number. My title in this life. The meds must be ordered and be there by Tuesday. No later. We spend hundreds of thousands of dollars on our insurance between our family of 4.
Tacrolimus and Sirolimus and acyclovir are key factors to keep this mom calm. Order it. Call me. Bye.
I left there with my three bottles. Hauling ass to another pharmacy. Losing my cool again.
Finally pulled back into my driveway. My sister sitting here. On my porch. Watching her only sister navigate
through fear. Through strength. Through a makeup-less teary face.

I would wake him back up to eat a little more. Sip water, Ensure and two more meds.
I was standing there in his room while he was sipping his little Dixie cup water and remember
standing in his room as a baby with my sister after we'd hear a peep in his room, and we'd walk in there receiving that little happy smile. The arms up to pull him out. Smiling at his auntie and his mama. That little smell of his formula stained cheeks and his binkie in tow.

To now, we hover.
To eat. To thrive. To build up from the pit he's in.
It's raining right now. He's been back to sleep for a while and so I head back in for a full glass of water and sips of Gatorade. Trying to get creative on what might sound good for dinner.

The rain is so good. For our Earth. For my peaceful home that cries for healing. For my cozy black sweatpants with the hole in the crotch, but just amazing softness.
My pandora is playing my favorite BonIver. I'm meditating. I'm praying. I am gonna do whatever I can to help him.

Kali drives home tomorrow....and his last words before he fell back to sleep..
"Aww that's awesome Mom, I feel like I haven't seen her in months"

Me too Bub, me too.

Have a weekend filled with peace my friends. Never take life, and health for granted. Ever.

Forgive and move on.

If you can...leave your someone special a love note-
I watched the beautifully graceful Mrs. Nancy Reagan's funeral...and how about their love letters you guys?! Pure beauty. And their pictures? Oh my....

Big love,
This Mama Lisa