Birthday Wishes

On Wednesday, Ellie would have been 11.  Ellie was born at 12:01 pm (12+1=13).  The school had a luncheon for all students and staff who wanted to come and remember Ellie.  As I walked to school, I felt sad thinking about how Ellie and I would never do this again.  Then I laughed at myself because Ellie hated walking.  Once she was diagnosed with hypothalamic obesity I was hardcore about walking her.  Even through snowstorms (some may have even called them blizzards).  Then I thought of how last year I asked Ellie what kind of balloons she wanted for her birthday, she responded that she wasn't that interested in balloons.  Nevertheless, this was our tradition to have the number of balloons as the age the child was turning.  So I forged ahead.  And I wished that Ellie were here this year to tell me to forget about the balloons.  My super friend, Cynthia, released 11 balloons in Ellie's honor. 

[caption id="attachment_3526" align="alignright" width="300" caption="Ellie moments after birth."][/caption]

As I was contemplating Esther's e-mail from a previous blog, I thought about how Ellie was pure love while she was here.  It was "too late" even while she was here, she did not have to die to experience that.   My sister commented on how Ellie would look at those around her with eyes filled with such love and appreciation, as she had never seen before. 

I just finished reading condolance cards from the students of Marquette.  They were sweet and funny and so sincere.   Here is what one of the students said, "I know it must have felt so horrible for Ellie, knowing she was going to die soon, knowing she wouldn't get to be an adult and be whatever she wanted to be when she grew up..."  Reading this made me literally feel sick to my stomach (maybe it was the big lunch I had just consumed but still).  The hospice counselors suggested we tell Ellie she was going to die soon.  Their recommendation was based on their expertise in grief counseling.  Our decision was based on our expertise in our family.  We took their recommendations into consideration and decided which ones worked for our family and which ones did not.  We decided that for Ellie telling her was not the best course of action.  Ellie never talked about what she would be when she grew up.  Ellie lived in the moment.  We did not feel that this recommendation was based on an intimate knowledge of Ellie herself, but a recommendation that is maybe made to everyone as a general rule.  I know that in many cultures around the world, the patient is never told if they are dying, whether they are old or young.  We wanted Ellie to feel peaceful and at ease her last moments here with us, not upset and worried.  We did not see what telling her would gain anyone, especially her.  So will someone please tell Ariel at Marquette so that she will not feel so worried?