I have wanted to write a blog about what a typical week looks like for Royce and me for a while now.  After some recent events I have decided it was time to write this blog.  I want to remind everyone that I am writing this blog per COTA recommendations; “Blog for Yourself First. Ignore the fact that anyone else will read what you write. Focus on your thoughts and experiences, and figure out how to put those into words. Be true to your voice.”

So a look at a typical week for us….

I work full time.  So during my four day work week I clock 32 hours of work.  I work an eight hour shift with a one hour lunch.  Majority of the time I work the 8-5 shift.  I have Tuesday as my set day off every week so that I can run errands and take Royce to dialysis.

Royce attends school full time as a first grader.  His school hours are from 9am to 3:30 Monday through Friday.  He attends the school aged child care (SACC) at his school.  On a typical week he attends SACC Monday, Wednesday, and Friday for roughly four hours each day, split between the morning and afternoon. He also spends Thursday mornings at SACC for 2 or 3 hours depending on my work schedule.   

Royce has dialysis four days a week.  He does miss roughly 30-60 minutes of school on Tuesday and Thursday afternoons so that we get to dialysis at a reasonable time.  Royce is attached to the dialysis machine for a full 3 ½ hours on Tuesday, Thursday, Saturday and Sunday.  But it takes time from the moment we leave home/school to drive, park, get food (he usually demands getting an ice cream), get his weight, draw labs if needed, and actually connect Royce to the dialysis machine.  Then it also takes time after his treatment is done to again get his weight, walk to the car and drive home.  On a good day it takes about 5 hours out of our day for a round trip to dialysis.  So dialysis easily takes up about 20 hours of our week.

On Tuesday’s I try to run any errands and schedule any needed appointments.  Of course I never feel like the five hours I have between dropping Royce off at school and picking him up for dialysis is enough time.  I have learned that ordering groceries from Target to be delivered in 2 days is the best thing ever. 

Since adding in the fourth day of dialysis, my mom and sisters Jackie and Jodi have helped by spending one of the weekend days with Royce at dialysis.  Because what I can’t accurately calculate is the hours each week needed to clean the house, do laundry, get groceries I can’t order online, get gas, sort through the mail, go to church, or spend time with people we love.

Our life is overwhelming sometimes.  Even when I am at work, I am always thinking about Royce or something Royce related; does he need any medication refills, did he eat his lunch today, what is his blood pressure, do we have any upcoming doctors’ appointments other than dialysis, what phone calls do I need to make next time I have a free minute and privacy, and this list is never ending and always growing and changing. 

I know this blog may sound like I’m complaining but I feel like people needed a little reality check.  Everyone’s life is busy! But there is so much in OUR life that is out of our hands.  I can dictate our dialysis schedule to point but it still takes 20 hours every week to keep Royce feeling good, his body healthy and simply put…it’s what we have to do to keep him ALIVE.  YES ALIVE!!!  Royce would be dead today if I had not brought him home from China when I did.  He is my son and I will forever do anything and everything I need to make sure he lives his best life.