The begining of the end..or maybe not

Every so often, something will happen that feels like the prism of my life has been turned.  All the shapes are suddenly different.  Nothing looks the same.  That is how I felt when Ellie was diagnosed with a brain tumor.  And that is how I felt yesterday. 

Our neurologist, Dr. Hsu (pronounced "shoe") came by yesterday.  Our doctors here are so spectacular that they often will stop in just for a visit.  I told him how the Dr. Hsu in the PICU(same name, weird, huh?) called this "disease progression" rather than "recovery" as our Dr. Hsu had been.  In my mind, I expected that our neurologist Dr. Hsu would tell me why he felt all of this was part of Ellie's recovery.  Instead, he went "off script" and told me that all of the things we are seeing now are signs of the end of life.  In my head, I hoped that I was the only one imagining this as the "end", that later on, friends and family would laugh at how dramatic and emotional I had been at this time.  Maybe I am just feeling emotional because I am flooded with post pregnancy hormones.  Dr. Hsu said that our main doctors were wanting to sit down with us and have a discussion.  Being "at the end" feels similar to being "at the beginning" of a child's life in a strange way.  The anticipation, what will it be like?  How will our lives change?  But in some ways the opposite, too.  How would it feel not to have this big thing (brain tumor) that our lives virtually revolve around suddenly gone?  Will I have a love big enough to let her go when it is time?  When she is gone, do I still get to say I have 3 children?  Of course my mind has been trying to prepare itself for this news for years.  I have felt as if we were living on borrowed time for quite some time.  We have been so fortunate to get to spend 10 years with this little angel. 

Today Ellie was really out of it--repeating everything someone else would say, or becoming completely nonverbal.  Then Ellie's grabulous 3rd grade teachers stopped by and it was as if a flip was switched, she was suddenly "back"--talking about books, making up words, telling jokes.  It was astounding!!!  Dr. Hsu came back inyo our room to say that he had received an e-mail from Dr, Iskandar (he is outta town) stating that he absolutely believes a shunt revision will improve Ellie's condition.  That has been the roller coaster ride around here!   

So my mom had a grabulous (great + fabulous) idea to give a "shout out" to all of you to send in the lessons you have learned from Ellie and I can share them through my blog.  If you feel so inspired, e-mail me your stories, ideas, comments, songs, poems to debibetsi@yahoo.com.