Rock stars

There are moments when you just have to wonder if the few days away by yourself are actually worth it because of the resulting chaos your leaving causes. If you didn't already guess, life with R. for the past couple of days has not been easy. Today we plunged even further into the abyss with some psychotic behavior we haven't seen a long time. (Thank goodness for rescue meds that work, because heading to the ER was not really on today's to do list.) This is definitely one of those ten steps back moments, especially after we had seen what seemed to be real progress in terms of emotional stability. Sigh.

This post isn't really about R., though, and is instead about her siblings. Their life with their sister isn't exactly typical. Frankly, there are times when they all really do have to fend for themselves because one hundred percent of my attention is focused on keeping R. out of the hospital. It kind of stinks. It is not the life I would give them if I had the ability to create what I would see as the perfect life. 

There are some days that I wonder if my imagined perfect life for them is really all that perfect. I'll use today as an example. The morning started fine. In fact I texted J. to say that R. seemed back to her normal, cheery self. And she was, until she wasn't. She turned on a dime and I have no idea what really set her back. One moment she's fine, the next she is screaming as if someone was pulling off her fingernails. I know that scream and my stomach dropped. 

The next few hours were spent trying to multi-task (something I despise doing) both getting ready for my afternoon horse classes at the same time trying to get R. calm enough that I can teach the horse classes. I thought I had done this as I walked out to the barn, especially since no one brought her out to me during them. When I got back into the house, I was told stories that showed her calm was a temporary state. 

Y. managed to get her involved (for a bit) with watching Frozen, R.'s favorite movie. But R. was so disregulated that it didn't stick. Y. cooked her a goose egg thinking that a huge dose of protein would help. Y. tried to get her to play a game with her. Y. finally realized she was loosing all patience and went to TM to say she needed to tap out. TM then took over, doing his best to contain her until J. got home and took over. On other days, D. has been the one to de-escalate R.'s mental state. I have seen nearly every child in our family step in when necessary and I hear them using my words to help to start to regulate. They are not always successful, but they are making excellent attempts. 

I have also watched these same children navigate their sisters having seizures. They know what to do and what not to do. It is a part of their life and they don't seem to think twice about it. When A. was teaching swimming lessons, she had a new student and the mother wanted to talk to A. first. The mother said her daughter had seizures and was A. okay with that. A. didn't bat an eye and said she was... because she was. A. told me afterwards that the mother started to cry. I understood why. People are funny about seizures. A. was able to give that mother a child a huge gift that day. 

The skills my children have developed living with R. are not skills that everyone has. It's not every fifteen year old who can use grounding and mindfulness techniques to de-escalate behavior. It's not every eighteen year old who can remain patient and calm in the face of fairly outrageous oppositional behavior. It's not every eleven year old who can manage a person having a seizure. It's not every nine or ten year old who can fix themselves a full meal without help because their mother cannot leave their sister. 

I realize that in the perfect life I would give my children, they would have no need for these skills and so they would never have a chance to develop them. They have not totally lost out by having a sister with very challenging needs. I do hope, though, that I can still insulate them a little bit, so that they do not have to worry about it all the time. It's one thing to help every so often, it is another thing completely to feel as though you are responsible. And there's the fine line, I think. Balancing awareness and ability with feeling responsible and all that goes with it. I'm not sure I get it right one hundred percent of the time, but I try.

Anyway, what I really wanted to tell you about the day is that my children are rock stars.