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207f222d96de29dfa4b021361d46e627It is summer vacation in my world. This means much the same thing as it does to mothers around the world. Long days of interrupted routine, despite searches for free or low priced entertainment, and the cussing every time the pool is closed for cleaning.

I have great kids but they are typical of all children. They need things. And when they  are bored they want things. And they want lots of things. They need to be entertained, they need to be seen, they need to be kids. But the problem is when they need to be kids, none of us can be grownups.

I have a routine. I have a routine because in order to survive this disease and this life that I have, I have to have a structure. I eat the same breakfast every morning. I do the same chores every morning. I live by a clock, both external and internal, that allows me to function at my best.

I have learned through the years that my best writing happens when I can pace, smoke, clean random rooms and furniture, and basically have the freedom to find the space I need to bring the visions I have to life. I can’t be stopped by requests for candy or even apples. I can’t be stopped by demands that I fix boring lives. And I can’t be stopped by ridiculous claims of glory between two children who just want something to do.

This means that my writing takes third place in a life desperately needing something that will activate my children’s imagination, while making them run until they can’t anymore, and still have the ability to laugh. This means that the voices that I have in my head have to be ignored in favor of keeping those kids. It means that the stories, the reality I live that no one can see, is a world I can only visit when I am exhaustingly laying in bed wishing that morning would come in its own sweet time.

I find it hard not to resent my life. I find it hard not to resent my children for this. It isn’t their fault that they are normal children who have no idea how to accommodate their diseased mother. It isn’t their fault that they don’t hear the screams of characters demanding that their world becomes true. It isn’t their fault that my life has to be run by routine because otherwise I am liable to lose my cool easier and easier. Keeping it all in line is the only way I can deal with all that is happening.

I know that September will come. I know that I have a lone vacation coming up where I will be able to write for days without interruption. I know this and so much more, but I worry about what those voices are going to eventually do when they realize that I won’t be able listen to them for awhile.

I have been slowly changing and finding my new way in this world. The goal being a better, more courageous, more loving, and more strong person. A person that can live successfully her own dreams. A woman that can find the things that will keep her soul in tact so that she can live another day. I am slowly trying to find away to fight a disease that makes no sense to most, and changes on a daily basis in me. I am trying to find a way not to be bigger than this disease, but to be able to find a place, a safe place, that will allow me the strength and courage to try the things I can’t wait to see.

Life, even for those of us who have diseases, doesn’t allow for our own opinion. It doesn’t give us our own wishes; we have to take them.  But the courage to take them only lasts for a certain amount of time. What if I am so busy with my children that I forget to find a new course, or I simply give up on all those dreams and bucket list items to lay down my life for motherhood.

I suppose the truth is I am very nervous that being this mom means that I can’t be anything else. I suppose the truth is that I resent my children not because of their existence, I love them too much for that, but because they are kids. I suppose the truth is I am looking for courage, strength and some sort of safety with everything inside of me, yet, my children also keep reminding me they haven’t eaten in the last fifteen minutes.

This is my life. And no one said having a disease would be easy. And no one said being a mother would be easy. So instead, I will simply close my eyes, go about my routine as much as I can, and pray at the end of this, that the voices I hear so loudly won’t have left me for a better diseased mind.