Crazy Seeping Out

Ok so perhaps the last blog was a bit dramatic.  And that was where I was at and I thought if I could put words to someone else's grief as well as my own, then it would be worth a somewhat revealing possibly later embarrassing blog.  So I went for it.  Thanks for all your comfort in the form of e-mails!  I must say it is harder and harder these days to keep all my crazy stuff from seeping out of this package I'm in. 

We told Ben on Saturday that Ellie is not going to get better.  That she is in fact going to die.  He seemed shocked.  And throughout the weekend he continued to have relevant, smart questions about the situation.  First he thought about how we could now go on vacation.  Then he was sad.  He shared last night (don't tell) that sometimes he likes Ellie and sometimes he doesn't.  I was so appreciative that he was able to verbalize that, because a thought like that could really cause a lot of guilt in a situation like this if it was allowed to fester.  He also shared how talking about death makes his heart and his tummy feel funny.  I agreed that indeed it does.  He shared that sometimes he cannot believe that Ellie is actually dying.  I agreed that I too wonder about that and then I remember that she really is.  This morning when I was particularly weepy, I told him that I was feeling sad right now, just as he sometimes feels sad, and I knew that I would also feel better soon, just as he does.  I was  having one of those moments where I felt as if I would not be able to stop crying EVER.  But I did just like I told Ben.   

Tonight two of our magnificent doctors, Dr. Iskandar and Dr. Puccetti came by to visit.  Dr. Iskandar confirmed that Ellie has not gotten better and it does seem that the end is drawing near for her.  He apologized.  I reiterated that I did not in any way feel that there has been a failure here.  We have had almost 11 fantastic years with Ellie.  Her body is giving out on her, it is time to release her and allow her to go play with her angel friends.  I shared with them how when Ellie was 4, she saw angels before her shunt placement but not afterwards.  Now when she is talking and reaching out unaware of the human visitors in her room, I imagine she is conversing with her unseen friends.  It makes me feel better. 

Great big shout out to Cynthia for not only visiting but bringing bagels AND taking Ben so he could go have fun with Caitlyn.  Also gratitude  to Esther for hanging with Ellie AND bringing us lunch (yes we have been well fed!)   Thank you to Ms. Zwart for once again spending time  with Ellie this afternoon.  She has the highly challenging job of telling some of the students at Marquette tomorrow about Ellie. I hope that some of Ellie's angelic friends come to help her out.  Big shout out to Dr. Jen for visiting and bringing gifts and discussing doctor stuff even though she was here as a friend.  Gracias to our neighbor, Chris for reading to Ellie and playing with Ben yesterday afternoon.  Merci beacoup to Lainie and Argyle fand Gavin and Aubrey for the super fun playdate Ben had on Sunday plus transport to and from said playdate.  And finally (I think) a big shout out to Kathy for bringing us dinner yesterday (yummilicious!!)