October 28, 2008 - Happy Birthday Alex

A sister's laughter
A cousin's companion
An aunt's awe
An uncle's heart
A neighbor's gift
A grandparent's joy
A friend's playmate
A stranger's smile
A father's pride
A mother's love

Alex, you are so special to so many people.
We all miss you and your incredible, unstoppable smile.
Today is a day we promise to remember your unique and very precious spirit.
We are all blessed to know you.
Happy Birthday my boy, my love, my heart.
Happy Birthday Alex!

October 26, 2008 - My Tattoo!!

Hi All,

So I finally did it. I got my tattoo. I love it so. It makes me smile every time I look at it. Alex drew this picture of himself when he was about 2.5 years old. It was part of a beautiful Christmas card. My favorite part is the little penis he included! He was proud to be a boy!

Have a great day!

G

Tuesday, October 21, 2008 - Hard Day

Hi all,

So today is a very hard day for me. It started out just fine, but then I thought about the fact that Alex's birthday is just one week away. The thought that we are not all excited about his upcoming birthday party and celebration just makes my heart want to scream. I should be out buying gifts, sending out Evites and checking it twice, getting Alex and Z ready for Halloween. Yet, that won't happen this year. My boy will never turn six years old. There will be no birthday party with tons of kids running around laughing with Alex. Alex will never be a grown, beautiful man. We'll never attend his graduation or his wedding. We'll never so many things.

It is just so unfair!!! It hurts too much.

Sometimes I wonder if I'll make it through this pain that invites me to fall into unknown depths of agony. Some days are better than others at avoiding the dungeon of hell that is my pain without Alex. Others, like today, are not those better days. A storm is brewing and it matches my inner turmoil. The thunder you hear is my inner angst fighting with my sense of survival. I'm sure there will be lightening and perhaps a tornado or two!

G

October 12, 2008 - Conversations to Remember

Hi all,

So the last week has been an interesting one. On Thursday, I participated in a panel discussion, "End of Life Nursing Eduction Course: Pediatric Palliative Care ELNEC-PPC" at The Children's Hospital. I was crying during the introductions. There were four children represented at this panel discussion with about 20 nurses in attendance. Two of the presenters, worked in Oncology at TCH. One was a nurse and the other was an administrative type (not really sure). The Oncology nurse / parent, chose this line of work after losing her 18 year old daughter to cancer. I thought that was too cool! Anyway, the panel discussion ended with this question posed to all panelist, "What did your child teach you?"

I had to think about this and if I had had time, would probably had a different response, but I said, "Alex taught me so many lessons, too many to list here, but one of the important ones is to appreciate the minutia in our lives; the simple, overlooked joys that exist in every moment."

BTW, I would like to hear your answer to this question as well. Please share!

So when I got home, I was ready for some wine! About half an hour later, Steve and I ended up in the back yard with our neighbor, Kevin. If you attended Alex's service, then you may remember Kevin. He talked about how Alex and God had their own calendar and that Alex did something every one of us from great politicians to you and me wish we could do, made an impression on everyone he met (and some he never met!).

Anyway, so we are outside enjoying a wonderfully beautiful fall sunset and I posed the question to Steve and Kevin. Kevin said, "Alex proved to me, beyond a shadow of a doubt, that there really is Spirit, something more than the physical reality." Steve agreed and posed this question, "Was Alex's spirit so bright, because he knew he only had a short amount of time to shine?" I disagreed with this. Personally, I think Alex's beautiful spirit would have continued (and does continue) to be as bright as ever. I even said that all children are born with this bright spirit and it is the soul's interaction and reaction to life - parenting, social mores, education, experiences, and life lessons- that either keeps that brightness alive or diminishes it over time. I think Steve and I disagree on this point. Anyway it was a great conversation to have and I wanted to share it with you.

So I also want to record/share a conversation Zoe and I had last night.

Z-"Mommy, where's Alex? He is supposed to be here, coloring with me."
G-"I know Zoe, that would be wonderful. But he does not have a body."
Z-"Alex is in the rainbows, and the mountains and the sunshine and the rain."
G-"Yes you are right."
Z-"But I want Alex here. I miss him so much. I just want my brother."
G-"I know baby, I want Alex here too. It is very sad that Alex is not here to paint with you right now."
Z-"Alex loves me very much. I love him too."
G-"Yes, Zoe, Alex is your angel brother and he loves you very much."

I have posted a pic of Zoe's new do!! Isn't she just adorable?!! We got her hair cut Friday because she won't let me brush it and it is torture for me to get tangles out and listen to her scream bloody murder. So this is our compromise!

Okay, so that is it. We are anxiously awaiting Nonni's arrival on the 22nd! We've got a ton of prep work before she gets here, so don't be surprised if you don't hear from me for a while!

Have a wonderful day!
G

October 5, 2008 - Choices, Poor Wretch, Choices!

So I can officially recommend berry picking in the mountains as a cure to gut wrenching angst. Mostly because it leads to berry pie later in the day!!!!

Steve and I had a good conversation Saturday morning on our way to the berry farm. Just for the record, I am not a fan of my own words coming back out of my spouse's mouth but in this case it was for the best. Anyway, he made the point that Alex would not want us to be hating the season of his birth, or the colors of his joy and spirit. So it is our duty to him to overcome our sadness and grief and live this life as we would with him, since he really is still "with us".

So I felt Alex's beauty while surrounded by the berry bushes under the clear blue skies with the wondrous mountains in the background and Zoe running around in pure joy of the simple life.

I can't say that all is well yet. But I am trying very hard to make better choices. One choice I have made is to re-read Elizabeth Gilbert's "Eat, Pray, Love". Last night I rediscovered this passage and want to share it with you. I believe it is a direct response to my prior post.

"The Yogis, however, say that human discontentment is a simple case of mistaken identity. We're miserable because we think that we are mere individuals, alone with our fears and flaws and resentments and mortality. We wrongly believe that our limited little egos constitute our whole entire nature. We have failed to recognize our deeper divine character. We don't realize that, somewhere within us all, there does exist a supreme Self who is eternally at peace. That supreme Self is our true identity, universal and divine. Before you realize this truth, say the Yogis, you will always be in despair a notion nicely expressed in this exasperated line from the Greek stoic philosopher Epictetus: "You bear God within you, poor wretch, and know it not."

I think I will end on that note.

Have a wonderful day!

G

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