I have had many people ask what a typical day looks like for me. Me, with my sweet boy, on 7 East. ME. I’m not speaking for Luke. I would imagine his day looks quite different, depending on the day. And Luke is the one that is enduring the physical pain, not to mention the emotional pain. He is also much more patient than I am. And calm. I’m calm during emergencies. Otherwise, calm is not in my vocabulary.

Luke keeps me up until midnight/ 1 am. We are both night owls. Except he is 19, I am not.  FYI. I try to get my “next day’s outfit” ready the night before. “Outfit “meaning I change out of sweats, into nicer sweats. I have been a part of many “rounds” in my leopard PJs. I have walked to the PICU in my leopard PJs. I care none. Plus, it’s leopard. I’m in my mid-40’s so who cares?

Luke sleeps in. Sometimes I do, but rarely. His labs are drawn at midnight every night and I sleep with my phone under my pillow to get the ping that new results are in. I study them. Sometimes I am in a half-dazed Ambien funk. Some nights I am standing next to Luke with so many machines beeping, I just keep hitting silence on the pumps and stand next to them hitting silence until a nurse comes in. I’m sure I have also slept through a lot of beeps, as well as jumped up out of bed in the middle of the night, dreaming of beeps. Luke can reach over and eventually silence whatever is alarming, but when he is sleeping and comfortable I want to try and let him have that peace. Oh, who am I kidding? I jump up all day and silence that stuff and Luke has learned to just ignore me.

If my day doesn’t officially start with the ice pellet machine and a diet coke…good luck to ya.

There are a LOT of people in and out our door every 20 minutes on average-then u get to talk to whomever that is. Nurses. CAs. Psychologist. Child life specialists. Caseworkers.  Social workers. Chaplains. ISS’s. Attendants.  Students.  Fellows. Bone marrow “team”. Oncology “team”. Pharmacists. Charge nurses. Janitors. Room service.  Nutrition.  Allllll dayyyy long.  U track every single teardrop, an ounce of fluid, and food in and out.  Any tiny pain anywhere.  Vitals every 2 hours. 300 medications. Some IV, some oral (now). Draw labs. Interpret labs.  Ask questions. Order food.  Fetch food. Sanitize every single thing.  AND ALL THESE THINGS ARE NOT instantaneously in his chart. Even if they were, not everyone is up to speed. So we do a lot of rinse and repeat. Speaking of…Laundry.  Re-sanitize over and over and over. Decorate room.  Very very little time to sit. Everyone thinks I’m just sitting up here knitting or reading a book or something.  It is nonstop. 24/7. It is exhausting. I pray. I text when I can. I update when I can or when I have anything to say after talking and listening all day. In between doing laundry every day- I am the sanitizing queen. I do so much laundry, I get pissed if someone else is doing laundry. ANNNDDDD, I just realize that I typed that. I’m kind of disgusted with myself. Oh well.

That’s a tiny smidge of the day in the life on 7E. I haven’t even gotten to what a shower for my sweet boy entails.

We are where we are. I know there are grand reasons and positives. I have faith I will understand that someday. Right now, I don’t get it. Enough is enough. I have begged God to give this burden to me. Not my son. Allow Luke not to have to go through this again. I would do anything to take this for him, in a heartbeat. If only it worked that way. I know the majority of parents will understand what I am feeling.

Shit tons of stupid buckets I can’t change,

Suz