That's my story and I'm sticking to it.

[caption id="attachment_2086" align="alignright" width="300" caption="Ben, our very own, "Gilda Radner"."][/caption]

At the gym the other day, someone was talking about a fundraiser for Gilda's Club (a support center for people experiencing cancer.)  One woman piped up that Gilda was a woman who died of ovarian cancer.  That statement made me feel as if I were physically punched in the stomach.  Gilda Radner was SO much MORE than how she exited this experience!  She was such a fantastic entertainer, paving the way for female comedians today.  I understood that this woman was trying to explain what Gilda's Club was, but not only does that definition not capture what Gilda's Club is, it only captures a minuscule part of Gilda's LIFE. 

[caption id="attachment_2087" align="alignleft" width="300" caption="More silly Ben faces."][/caption]

Often times when I am telling someone for the first time that my daughter has a brain tumor and that she was diagnosed with it at 20 months, they will get this shocked sad look on their face.  I would probably do the same if someone were telling me this story.  As I am telling the details of this story, sometimes, I think to myself, "Wow, this SOUNDS really bad."  Talking about shunts, surgeries, hypothalamic obesity, thyroid malfunction, precocious

[caption id="attachment_2088" align="alignright" width="300" caption="Ben showed up at just the perfect time and has added so much to our family."][/caption]

puberty, loss of vision, sleep disturbance, lack of communication between the hypothalamus and pituitary gland.  It all sounds so incredibly terrible and dramatic.  I am quite certain if I spent a great deal of time contemplating it, I could get myself quite worked up about it (and sometimes I do!)  But this medical description in no way captures our experience.  How can you feel sorry for one of the happiest kids I know?  Whose main goal almost every single day is to spread her joy or be as silly as she possibly can.  SHE does not feel bad about having a brain tumor.  Having a brain tumor isn't even really a part of her

[caption id="attachment_2089" align="alignleft" width="300" caption="What could be funnier than a wide open mouth? I bet one of the doctors would appreciate that pose..."][/caption]

experience.  She is used to going to the hospital, so it's just a place we go like the library, school, the grocery store.  

Here's the story that I feel best about.  Ellie decided before she chose this physical body to come have the experience she is having.  This is what she is working on and allowing us to work on too.  When I think of this, I am filled with awe of her courage.  Thom & I were chosen along on this incredible journey.  This journey called "brain tumor" is not really a part of her experience, she's got more important things to do.  

[caption id="attachment_2090" align="alignright" width="300" caption="Ben has turned the world upside down for Ellie! Still, she is NOT amused by his picture taking..."][/caption]

Our lives have been transformed having Ellie in our midst, she is a constant reminder to stay present, appreciate this moment , to focus on what is important and not get waylaid by minor irritants. 

[caption id="attachment_2092" align="alignleft" width="300" caption="Ben adores a photo op."][/caption]

Last week, Ben, Ellie, and I were walking to Willy Street Co-op.  As we were walking, Ben shouted, "Hey there's my favorite color, purple!"  It was a purple van that Ellie had noticed on the previous day's walk.   I said, "Wow!  You and Ben have so much in common--you both adore purple, you both think I am the best mom in the whole world..." to which I began to chuckle at myself for my little joke.  Ellie looked at me strangely, she had no idea why what I had

[caption id="attachment_2091" align="alignright" width="300" caption="Ellie plays the guitar, while Ben continues to make funny faces."][/caption]

just said would be funny.  She thinks that me being the best mom in the whole world is the TRUTH, not a joke.  What other 9-year-old would not roll his/her eyes at a parent for saying such a thing?  Not our Ellie.  It was one of those amazing, shining, fleeting moments where I was so filled with appreciation and gratitude that I did not want to change one thing about our lives.  And if all of this is what she comes with, well, it's worth it.