Playing Limbo

Right now it feels as if we are playing 'limbo'.  It feels as if the bar is getting lower and lower of what Ellie can and cannot do.  Even earlier this week when Ellie was doing "better", the better meant being able to talk and sit on the floor.  Not being able to actually do burke (book work).  Ellie had a seizure last night and then another one this afternoon. 

 

Thanks to all who have participated in the parade of love this weekend.  Thanks to Zumba Jen for her lovely visit and delumptious soup.  Thanks to my in-laws for driving all the way from St. Louis.  Thanks to Cynthia for her visit and errand running.  Thanks to Sue for more yummilicious cookies and reading and talking time. 

I would be negligent, if I did not mention all of the wonderful behind the scenes work my mom has been performing.  Her continued efforts at taming our laundry monster pile, sweeping the floors, emptying the garbage, cleaning the kitchen, rocking the baby to sleep, sitting with Ellie--that doesn't even cover all the emotional support--have made my life so much easier.  With her here, I have been able to focus on the people in my life.  Thank you does not even begin to express my appreciation.

Here is another lesson from our frabjous neighbor, Chris.

One thing that I'd like to share that Ellie has taught me is how true the statement is that "life is not the sum of what happens to you." Ellie truly experiences each moment that she has, enjoying whatever is there for her, whether it is colorful crayons or a chocolate chip cookie or a person that she loves. I believe her ability to do this is at least partly because she also experiences pain or frustration or whatever else may come up in the moment, rather than repressing those feelings. But I also believe it is because she is open to joy and beauty and love and focuses on that rather than on what is unsatisfactory. Ultimately, the fact that she is so often "jilled" or "frabulous" in conditions under which I would be very tempted to be full of self pity, is an incredible life lesson. She doesn't let a story about "what should be" get in the way of experiencing the beauty and wonder of being alive and surrounded by people who love her. She is a great spiritual teacher as well as a little girl who is very loved.

 

Love to you all,

Chris