Will this ever be easy?

So I have wanted to write a blog post about Logan's Make a Wish party he had a couple weeks ago. I just haven't found the time to put my thoughts down. Part of it may be the dark heavy feelings that tend to creep in from time to time. Tonight I am so upset and honestly sick of what Logan's illness has taken from us and what it has put us through. Please don't think for one second that this reflects on how I feel about my son. His illness (or whatever you would call it) does not define him. He is a three year old living with disability. 

So tonight I am mad at the disability. I am once again very mad that we have to rely on others to care for our son. We have had a very hectic schedule with our nurses this summer. Between vacations, nurses leaving, a no show, and ill calls I am frustrated and exhausted. We have a great group of nurses that have bent over backwards. They have been through the ups and downs with us. Now as changes are happening, the replacements are just not fitting into place. We have almost one night shift every week that is not filled causing Joel or I to stay up all night.

I agonized when we had to request nurses schedules be changed to accommodate 24 hour care. We used to have 20 hour a day care which worked out pretty well but with Logan's increased need for monitoring and care we were allowed the 24/7 care. And boy we are so fortunate to have been given the hours. Now we are having to shuffle schedules and that affects more than just our family. This is people's livelihood. I hate that we have to be involved in it at all but unfortunately I have to be on top of the schedule otherwise shifts don't seemed to get filled.

As Logan's parents it is our job to care for him but is it fair that we have to stay up all night when the funds are there for a company to provide us with help. Logan requires frequent care at night that doesn't allow us to sleep. I am always thankful for my time with him but I feel more and more anger building and I don't want to start looking at him and seeing him as the problem. He can't help that some crazy degenerative disorder has taken over his body. Once again I am so mad at this whole situation and mad at what having to rely on others has done to me. 

I feel horrible for saying all this. There are so many families out there that don't have the resources we do. I sound like a spoiled brat complaining. 

I am a cranky wife and mother and a poor friend. I can't follow through on things and when I am home I get overwhelmed and shut down. I can't even pack my lunch without it stressing me out. Not to mention the other stressors that come along with parenting and marriage. We never seem to get ahead or catch a break. 

Ugh. As someone I know might say, I just vomited all over. She says that is what venting is! I don't feel any better but at least I have worked myself into enough of a tizzy that I am getting pretty tired. I have a five year old who is now awake complaining of a headache (it's 1:45am). She is so good at being sick. She just rolls with it and always tries to make it seem like she's not sick. Not sure why but she really puts on a good face! 

Hopefully she is better tomorrow because we are planning a day at the Como Zoo. I have wanted to take Logan all summer. Something always comes up when we either try and go out of town or when we try to plan something with him. Hopefully the stars align tomorrow. Also hoping he doesn't freak out too much. He is becoming increasingly sensitive to all sensory input these days. 

As always, thank you for reading and allowing me this space to write. Therapy is a lot more expensive than a blog! Hopefully I will have the Make a Wish blog up soon. Anyone want to help?! :)