Earlier this year I decided to reduce my weekly hours from 40 to 32. Yes, I'm taking a whole day off. My day job is that of a graphic designer. The company I work for very much treats the employees like family. Most of us have been there for 10 years or longer.
So, when I approached them with the idea that I would work only 4 days a week they were very open to the idea. The reason they are ok with this is because they know why.
My son, Luke, is the reason why. Luke has been regressing in his health for almost a year now. He is a very handsome 20 year old man with a rare genetic disorder called FoxG1 Duplication. In January 2017 Luke went into the hospital with Pneumonia. He did recover from that illness, but every since then we've been struggling to find out why he has regressed physically in almost every way.
Luke has a difficult time sleeping, eating and taking in fluids. Mama's full time job now is pretty much just taking care of Luke. It is a daily, all day long, job to make sure he gets the calories and fluid ounces that he needs to sustain his body. At night time we are up all night long taking care of his needs to make sure he is comfortable enough to get some rest.
There is so much more to be told about Luke, but I'm going to let @findingjoy tell that story. Yep, Mamakirbs is on Steemit! She hasn't posted yet, but you may want to keep an eye out for that first post whenever she gets a moment to sit down to write it.
Today, Friday... my day off, I got to spend a little time with Luke on the tractor. Here's an instagram pic of that moment with description below.
Luke likes to sit by me on the tractor when I'm out pushing stuff around. Yes it's a little uncomfortable with two people on that tiny tractor, but I value these moments with my son. Every day is a struggle for Luke. We are continuously trying to figure out how to give him the highest quality of life. I'll look forward to these tractor moments until he just doesn't want it anymore. (Then I'll miss them)
Oh, so why did I title this post with ... at what cost??
Well, sometimes I think about the $10,000 per year that I gave up to take every Friday off. Yes... that's the cost. However, to me
It's So Worth It!
We are doing ok on the reduces salary and I'm so loving being able to give Mamakirbs a little break during the week and loving having these extra moments with Luke.
Thank you for being a very supportive community!
