NavigatingLifeWithLMS

I am not tired. No, I am not exhausted. I am beyond exhausted; I’m burned-out. As a special needs parent of a medically complex little girl I don’t get vacations….or at least I can’t remember the last time I had one.

You might assume I mean a vacation in which we go somewhere as a family. Yes, that would be nice, but I don’t even get to use my paid time off (PTO) from work for anything but medically related to my daughter.

Before you get your panties in a wad and think I am just a special needs parent complaining about the vast amount of responsibility that was thrown at me, I assure you that is NOT it. I wouldn’t trade a single thing about my daughter because I love her just the way she is. All I want is extra time off with my family that is not spent at the hospital, or anything else medically related.

At any given moment our sweet princess can get sick, have shunt failure, develop a fever, or any other random things that can get her admitted to the hospital. Especially since she is still in treatment for leukemia, her hospital stay can be lengthy.

I work most of the time she is in the hospital, but sometimes for many different reasons I can’t work. When I can’t work, I have to use my PTO. In less than 6 months Kailanie was admitted 3 different times for 3 weeks to a month-long stays. Luckily, I had co-workers donate some if their PTO. Without these wonderful people, it would have been impossible for us to pay bills.

The point of this rant is most people do not realize our lack of “normal” family time. Many people likely don’t take the time to think about why I need so much time off, and why I might be burned-out. All the “fabulous” time off you see me taking, I assure you, it isn’t all fun and games. Unless you count guessing what random virus your kid has, or playing 20 Questions with a specialist fun, we are not having a good time.

It is getting harder for me to get out of bed every morning and go to work. I am not as driven to get things done as I once was. This burned-out person is not who I want to be. I feel too weighed down with too many other things. The idea of recharging is constantly on my mind. It would be nice for us to spend time together as a family and not have to worry about work, the hospital, kids going to school, or anything else. I long for the moment we can be free and exist without expectations….even if only for a short while.

Peace, love, and happiness

DON’T FORGET!

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