October 4, 2008 - Something's wrong?

Hi all,

So this past week has been tumultuous to say the least. I think everyone feels it, but my gut really feels it. I just want the new President of the United States elected already so we can move forward. The VP debate and the bailout bill have turned me into a MSNBC and NPR junkie. I can't get enough information about what will happen next. BTW, I love Rachel Maddow's show on MSNBC. If you have not seen her yet, please check it out. She is a funny, smart commentator and says what I wish I had said!

So I have been up since 4:28 am. I can't sleep. I have so much to tell you all but really can't remember any of it now. Since my last post, I have joined Facebook (please look me up, I would love to meet you!!) and love it. I have reconnected with some dear long lost friends. One is from and lives in Denmark. Hi Annette!!! Another one is my college friend, Mike. Mike and I spent ALOT of time together. He was my best friend and we truly loved one another. I am so excited to have him back in my life. Unfortunately, he was not aware I was a mom or of Alex's journey. So telling the story of my last 10 years has been gut wrenching. Literally, my gut is in knots and I can feel it churning.

Also, I had lunch with two dear friends this week. It was good to get out of my normal routine and just have an hour to myself, for myself and my friends. I think part of my current discomfort is due to the fact that I feel as if I am "falling away from the lessons of the past." Does that make sense or did I use way too many words in that last sentence?

Yesterday, we had a conference with Zoe's teachers. Zoe had some real difficulty at the beginning of the Fall semester when one of her favorite teachers became "sick" and was absent for two weeks. Zoe does not do well with the word "sick" and really had a serious regression. The classroom became a scary place for her and she was spending time in the hall, by herself. Needless to say, that won't ever happen again at this school. The lead teacher had some great insights and questions for Steve and I. I had to ask though, what was different in the summer months, when she made such great strides in her social development. The teacher replied "you were happier." WOW!! What a blow. But it is true.

I woke up thinking, "why was I happier?" Was it the workouts, the camping trips, the free time? I don't know, most likely all of that. But I know I was in touch with myself. I wasn't drinking so much (maybe) and I was knitting too. I feel like life is sweeping me up and away from all that I really want and need to accomplish to honor Alex and change this world.

This point really was driven home when we attended the Children's Hospital Remembrance Ceremony last week. Alex's name is on a plaque near the chapel at TCH now. This was the dedication ceremony of that Remembrance Wall and also an opportunity to plant a bulb in the Hope Garden. While the pastor was thanking all of these different persons/families, etc. I felt, I should have done that. I want to volunteer here and make a difference to families with sick children.

At this ceremony, I also saw Dr. Foreman. I was able to ask him some questions, I have always wanted to ask since the loss of Dear Alex. I asked him "has it happened again?" He replied, "no". G-"So in all of medical history, there are only two cases where a jpa or gangliganglioma has fostered a second high-grade tumor?" F-"Yes." I asked, "have you considered going back and reexamining the biopsy to double check the original diagnosis?" He replied, "Yes, I have and we did (and it was correct)." Then I asked if he knew of any study regarding Breath Holding Spells and brain tumors. (I asked this question, because Alex's pediatrician has had three kids, in her decades of experience, with BHS and two of them (Alex included) ended up having brain tumors). He said he did not and would look into it. Then we got into a conversation of correlation v. causation. I then introduced Zoe to Dr. Nick and Zoe was not happy to see him. You could see her brain just spinning with memories, etc. Dr. Nick is British and very distinctive. I could pick him out of an airport filled with people quite easily. And Zoe was not pleased with these memories, or rather was confused by them. So then we went to plant the bulbs. Zoe wanted to plant several and we plan to go back in the spring to see how they did.

Finally, the Kabbalah class is starting to get to me. Kabbalah is about finding parallels, light in the dark, etc. It is very difficult to believe that the loss of precious Alex is a part of a destiny for me. If I had known that, would I have had children? Would I choose to live this life? I don't know. But it really does not matter since, I am here, I have children, I am living this life. So what do I do with that? I know I have to work on my own self value. I know I don't think highly enough of myself. Who does? But that is a hard task for me. I need to go on that show "How to look good naked!" where the gay guy helps women break through their warped body image. That would be a huge gift to me if I could feel comfortable in my body instead of hating my body so much. That has to affect how I feel about myself! I know I am kind and generous and a good mother, but I also know that I hate my flabby gut and have always hated my thighs. And as I age, I'm just adding body parts to my hate list: neck, arms, back, etc. Where will it end?

Okay, I'm done. This is just too much. Back to that gnawing gut again!

Love,

G