December 3, 2008 - 1 day to 1st Deathday

Morning, I apologize for not writing. So much is going on these days. We decided to keep Zoe home instead of sending her to school for a while. After much deliberation, it was the best decision for Zoe and our family. We will miss all of our friends at the school but I hope to keep in touch. Zoe seems to love being home. She just had a house full over the Thanksgiving holiday. Steve's sister and her family came in and stayed for almost a week. The boys, though 9.5 years old, really took to Zoe (again) and they had a great time. Zoe is working on become a great artiste! She loves to paint and does it with such deliberation and intensity. The works are actually very interesting and quite colorful. I'll try to post some later. So tomorrow is the 1st deathday. I received an email yesterday and the author said that it must be hard since his birthday is approaching (just a mistype, I'm sure). But that got me thinking, tomorrow is like a birthday, but not. So I have called it a deathday. Steve may prefer passingday, but it is what it is no matter what you call it. My body has become very ill and I have a mild flu thing going on (thank God for flu shots). I think it is quite appropriate that I am physically ill at a time when I am invited to be mentally devastated. This past year has been a blur. I really do not want to remember the events of one year ago tomorrow, but they keep creeping into my conscious. So I have started a mantra, it is a meditation taught in the Kabbalah class. It is Dlayt Atar Pauni Meenay (pronounced d-late, a-tar, panooee, manet (like Monet, but the "a" sound). It means "there is no place empty of you" or "God is everywhere". It has really helped for some reason. I love saying these words softly, they follow your breath and just come naturally to my being. Feel free to try it! Tomorrow, I hope to sit with an "Angel's Influence" candle given to me by dear friends that practice meditation and repeat these words. Alex has been making himself very present lately. He loves to play with the light in our bedroom that is a "stained glass" bulb and usually kept on most of the time. It also shines on a collage of pictures made for his Memorial service last year. He turns it on and off whenever I pass and I love to feel his presence. I think it is his way of telling me, I am here, I am Light, I will always fill your world! Okay, that was deep. I hope you feel Alex's light in your life. He was so precious and a such a gift to this reality. God bless! G

November 13, 2008 - Parallels

So things have been uhhh, interesting, lately. Let's start with last night. I had this intense, vivid dream where I, Gwen, (not Gwendolyn, not mom, not Mrs. Kasnoff) moved into a house with a few of my high school friends. (I have reached many friends from HS via Facebook and am loving it). Any way, a party ensued at this shared home. Rob Thomas, musician from Matchbox Twenty (who sings our song "Smooth") was hell bent on OD'ing on crystal meth. Many things happened at this party but it's true meaning came out when I told Steve about it this morning. During my description I said "I was just so upset that I was living in a house where someone had died." Read that again, just to get the full effect.

In addition to that, my subconscious is playing tricks on me. Let's just say it kept me from going someplace that I really wanted to go by creating a diversion to a similar location.

On top of all of this, we feel that taking Zoe out of school for a year might be the best thing for her. It seems pretty apparent that Z needs some attention that only a Mom (supported by Nonnie) can provide. This transition will not only benefit Zoe but me as well. You see, trying to teach someone else how to handle your child's emotional and developmental needs is more stressful than just doing it yourself (or that is what I'm thinking right now).

So Linda/Nonnie knitted a sweater for Zoe and when she finished, Zoe said "Okay, Nonnie now make Alex a sweater!" Linda agreed and my first thought was "oh no". But the next day, we spoke to Z's play therapist about the sweater and she thought it was a great idea. She said this is Zoe's way of saying "I want Alex included in my life" and that to have something tangible would be very useful to Zoe. Zoe is too young and developmentally not able to understand "angel brother". So this is her way of processing Alex's loss. As the therapist said, it offers us the opportunity to ask, "What shall we do with Alex's sweater?" and "Where will we keep Alex's sweater?" So send us all your prayers for successful trials!

So December 4 is coming too soon. I wish I could just disappear. I remember hearing it said that "you won't remember the first year." At the time I thought, "I'll never forget this, how could I?" but now that we are over eleven months into it, I think that they may be right. My mind is just too overwhelmed with emotion to recall many events of the past year. If you ask me about almost any day the year prior to Alex's passing though, I think I could give more details than you could imagine. Let's just say, I'm a different person every day with different wants, likes, dislikes, aspirations, plans, etc. I'm all over the place these days and it is a wonder I still have a head! Poor Steve!

So please forgive me if this is disjointed entry. I had to write it in several sessions through the night.

I'm exhausted. More later.

God bless.
G

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

Friday, September 19, 2008 - A Day I don't want to remember . . .

So I just had an incredible weekend in Richmond, VA with some friends I have known since elementary school all the way through college and to today. We all gathered to witness the wonderful wedding of our dear Terry and her husband, Aaron. It was all that I hoped for her and much more! Aaron is just a wonderful, kind, beautiful soul. I can't wait to get to know him as well as I know Terry (though the feasibility of that is slim.) I reveled in being with my friends of old. I feel so comfortable and real with them. Many did not know what the past two years have been for our family and were quite taken aback to find out. Yet, the leper I was not. Each one said or did (thanks Jen!) something that expressed deep sympathy and concern. This could have been a drunk fest for me. I worried about making a fool of myself for weeks until my therapist told me that I needed to "honor Alex and be the mother he respects and wants to show off to the world"! Boy! that worked!! I still imbibed but was able to remain in control and off the piano top! The fact that I was sweating buckets probably helped as well!

So while I was gone, Steve's mom, Linda sent ZG a baby. Zoe had asked for a baby in an earlier phone conversation with her Nonnie. It is a Middleton Doll that has big brown eyes and brown hair, is very realistic and resembles Alex very much. I will attach picture for you to see what I mean. Anyway, the doll seemed really spooky to me via its picture I received in Richmond. Zoe liked the doll and played with it a little bit, but I had not seen her touch it except to carry it to me when I arrived home. On Tuesday, Zoe and I had this conversation while I was preparing for a bike ride with our bike trailer (ZG and Alex used to ride in this together).

Z- Mommy, Alex sits there. He will be so excited to go on a bike ride. Let's go find him!
G-Zoe, we can't find Alex. He is an angel and does not have a body.
Z-Why?
G-Because he died.
Z-Why?
G-Because he had a bump inside his head and it grew too big and Alex could not breathe and then he died.
Z-Why?
G-I don't know why Alex had to die. I know we miss him very much and it is very sad that we don't get to see him anymore.
Z-(silence, look of great disappointment)
G- (leaves garage, too much to handle)
Z- Mommy, let's ask Nonnie to find Alex!
G-Baby, Nonnie can't find Alex.
I turn around and Z just looks like she needs a hug, so I pick her up and hold her and she holds on to me with her arms and legs as tightly as possible. And we start crying and I say "Zoe, your brother loves you very much and I don't know why he had to die. It makes me very sad that I don't get to see him anymore." Then we just held each other and cried some more. Then Z was done being held and started to push away from me, so I let her down.

Later that evening, Zoe had almost the exact same conversation about Nonnie being able to find Alex with Steve. As Steve and I were discussing this later, we realized, Nonnie had sent the WRONG baby. Zoe did not want just any baby, she wanted Alex. Just about that time, Zoe came into the house and said "Mommy Dad (both of our kids called each of us Mommy Dad(dy) come see, come see!! I made something!" So we followed Zoe outside to her sandbox which had this large well packed and defined mound that was even kinda decorated with finger lines. Steve and I oohed and ahh'ed over Zoe's mound and went inside to finish our dinner. Later Steve turns to me and says,"you know what that was in the sand box don't you?" I reply, "besides a mound?" and he says "a bump."

So take that in for a while then continue reading if you choose.

As you know, I am currently working for Kabbalah Experience. I have been given the opportunity to sit in on a Level I class, Soul, on Thursday mornings. So far I have had two classes and can tell this is going to be deep. One thing that was mentioned that I wanted to share with you is the difference between Kabbalah and Eastern (Buddhists) beliefs. In the East, an ultimate goal is to be free of all attachments so that one can be "detached" and experience God's mind. Our pain (and joy) are direct results of attachments to people or places. To hold on to these attachments prevents us from experience God. This is a very internally driven view in my mind.

On the other hand, the Kabbalists say that true understanding of God comes from being open and aware to the parallels of our existence. The physical reality is paralled /mirrored/and effected by the spiritual reality and vice versa. So to Kabbalists a great loss, like the loss of our dear Alexander, will bring connections to our lives. To experience God, we just need to be open to how and where these connections take us. Therefore, I see Kabbalah as a very externally aware practice. I am not ranking either of these points of view and I know I have done neither justice in explaining them to you here. I just wanted you to understand what I am thinking about these days.

So to end, I really want to scare you. Remember that baby doll, Nonnie sent? Remember when I said earlier that it was kind of spooky? Well the other day, I picked it up. I was planning on moving it someplace out of view. Then I held it, and it felt sooo very good. The doll has real weight to it and its bottom is shaped just like a diapered infants bottom. I started kissing it and holding it like a baby and felt joy in my heart. It was so strange (I know, I know). But it felt good. I carried the doll around for a while, on my hip, etc. Then I put it down. The next morning as I was driving Z to school, I started thinking about this doll. I just wanted to turn around and go home and get it and hold it again. So yesterday, after a very long day, and about an hour or more of trying to keep myself busy so I would not go to the doll, I went and picked it up. Again, I felt at ease and comfortable immediately. I just love hugging and patting this doll. I told my boss at the staging company about it and we agreed that if I start calling in saying I can't find child care for my doll then she can have me committed. But for the time being, we both think if it feels this good, then just do it. Steve is completely freaked out (I think) but he has not really done or said much about me carrying this baby around. We'll see how long this lasts.

Okay, there is so much more to talk about but I'm exhausted. Zoe is napping and I think I will join her!

Love to you all.

G

Friday, September 5, 2008- Letter to Parents of Children Fighting Cancer

Here is a letter I wrote to a family who's child is fighting Leukemia. I just wanted to share it with you so if you know anyone (hopefully you do NOT) you could share the sentiment. Steve and I are doing okay. Being busy helps and hinders us. I told Ms. Grace yesterday, "I'm not used to this stress!" and she just looked at me and said, "now, Gwen . . ." So I guess the more accurate statement would be I'm not used to being in traffic, rushing from place to place and feeling like I am spinning my wheels and getting nothing done. So much is falling through the cracks. I am dreading the 19th and just to make it worse, I have scheduled my first session with a personal trainer that morning. Maybe I can just fatigue myself out of that day! Wish me luck! Zoe is doing well. She still dances to her own beat and is very head strong. (I have NO idea where she gets that trait!!) I have put some pics from our last camping trip at Steamboat Lake up. I hope you enjoy them. So here's the letter:

Our mutual friend, xxxx, told me about your precious little girl. Our son, Alexander, lost his fight against brain cancer last December, and I may or may not know exactly what you are going through. I just wanted you to know that you CAN do this. You can do this for your little girl because every ounce of strength you muster helps strengthen her. Your smile helps her feel better. Your laughter fills her heart and gives her comfort. Your care and tender touch heals her soul and lifts her spirits. She is a precious soul that will never leave you nor stop feeling and knowing your love. And the gift is, neither will you ever know a day without knowing her love and spirit. Hold your baby girl, talk to her, sleep when you can, but if you need caffeine don't hesitate to take all that TCH has!!!

I wish I could tell you (lil girl's name) will make it through this unfair test of her physicality, but I don't know that. I do know that TCH is an incredible facility with amazing doctors and specialist. My prayer is that you feel that your child is getting the best care. If not, then fight for it!! You are ALWAYS right and should always be listened to when it comes to (little girl's name) care. Do not hesitate to speak up for her.

Alex told my husband one night, "Daddy, if you get scared you can hold my hand." Sometimes I wonder if these souls know that they are here to make us better. To give us insight into the blessings and trials of humanity. I bet you know what I am speaking about.
If you ever would like to meet and just hug one another, talk, drink coffee or anything; please do not hesitate to ask. I would be honored to run to and fro the hospital for you. To bring you "non-hospital" food. To do anything that would make your life easier. Just ask and I will be there. Does your dog need walked? Your house need cleaned? Your car need a tune or fill up? Just ask. Please know that (little girl's name) and her entire tribe of friends and family are in my prayers and that I have complete trust in your abilities to take care of your dear child.

God bless.

August 26, 2008 - 38 Weeks

Hi Everyone,
Well, life is roller coaster for me lately. The transition to working two gigs has not been an easy one and the change in seasons is also very trying. You see, Alex and I always loved autumn. The cooler weather, changing colors and falling leaves always signaled the coming of Alex's birthday. There will be no birthday party this year with my beautiful boy. I know this and absolutely HATE it.

Zoe has been asking about her brother ALOT these days. Just this morning she asked me, "Mom, where's Alex?" To which I had to reply, "Alex is dead baby." And Steve added, "He is not here, Zoe."

On our last camping trip she and I had the following conversation:
Z-Mommie, Alex come back like Nonnie?
G- No baby, Alex is not coming back.
Z-Alex has a bump, Alex has a bump inside his head?
G-Yes, baby.
Z-Alex need a band aid!
G-No baby, there is no band Aid for Alex's bump. We tried very hard to find one. It is very sad that Alex is not here. We miss him very much.

On most every other front, Zoe is doing fantastically! She has really blossomed over the summer and her smile has returned.

I know this post is short, but you all are probably grateful for that. I will do my best to keep you more up to date on our status. Just know that rough waters are ahead for us from this point on.

Take care and take a moment to appreciate the ones you love in your life today. It is worth the effort!

God bless,
G

July 25, 2008 - The Circle of Life

Good Morning All. I am writing to you from a place of peace and tranquility. Life has worked some incredible miracles for me recently and I am so excited to share them with you. First of all, a dear friend and wife to one of Alex's best friends has organized an incredible group of women to participate in the East Boulder Relay for Life benefiting the American Cancer Society. I have been invited to be a member of the "Sleepless Beauties" team and next Friday night we will walk to honor Alex, the organizer's mother (who is a cancer survivor) and another member's husband who is winning the fight against breast cancer. There is just too much cancer in this world and I am honored to participate in this event. Thea (the organizer) unbeknownst to me or Steve asked all their guest at her husband's birthday party to purchase (and decorate) a luminaria to honor Alex at this event. If you would like to purchase a luminaria to honor Alex or someone you know and love please go to www.eastboulderrelay.com . They are $10 each and will light our path as we walk through the night next Friday.

Next I want to tell you about our last camping trip. I was so excited to have three other families join us for camping at Mount Princeton last weekend. While I had a blast, the best time was watching Zoe following her friends in the adventures of camping. She was so proud of herself for climbing on the rocks, jumping off rocks, walking over narrow bridges (which I could not do), and wading in the creek. She hiked with us and was always saying "Look at me! Look at me!" when she tried something new. It made my heart sing to see her so joyful. She really loved being around all of her friends.

One family had a son named Alex. When I told Zoe the list of kids that were going to be there and came to "Alex"; her face lit up and she was so excited! "Alex is going camping with us!!!" I knew I had to do some quick damage control and said "no, baby, not our Alex, Jackson's Alex". She took my words in and became very quiet and walked away. She never mentioned it again. It was strange to be calling Alex's name again and when I asked Steve what he thought about saying his name he said "it felt good to speak his name again". When he said that I realized he was right! Can you believe that just speaking his name could bring joy?

So last week I started a part time gig with Red House Staging. I will be doing the administrative and bookkeeping work for this home staging company that operates out of Washington DC. The owner, Lyric, is awesome and about to deliver her second child in early August. So far this week we have been able to set up her accounting and I even got an old debt collected for her. She and I should make a great team!

On Friday, I also accepted an administrator position with the Kabbalah Experience. This is a religious studies, non denominational, non profit. It is a small organization and my work will be as their "face" or administrator. I have to tell you this story. So on Tuesday, I was speaking to my therapist and she started talking about "compassion for self, so one can be compassionate to others" as a difficult concept for most humans to comprehend let alone accomplish. I was confused and asked, "But don't you think I am compassionate?" She said something to the effect that "while I am compassionate to others; I do not honor myself as worthy and deserving of compassion so that compassion is limited". I still don't get it, but anyway the night before the interview I asked Steve to tell my about Kabbalah and Jewish Mysticism. He asked me to look it up on wikipedia then come back to him. So I did. While I was reading I came across this:

"Righteous" humans (Tzadikim) ascend these ethical qualities of the Ten Sefirot by doing righteous actions. If there were no "Righteous" humans, the blessings of God would become completely hidden, and creation would cease to exist. While real human actions are the "Foundation" (Yesod) of this universe (Malchut), these actions must accompany the conscious intention of compassion. Compassionate actions are often impossible without "Faith" (Emunah), meaning to trust that God always supports compassionate actions even when God seems hidden. Ultimately, it is necessary to show compassion toward oneself too in order to share compassion toward others. This "selfish" enjoyment of God's blessings but only if in order to empower oneself to assist others, is an important aspect of "Restriction", and is considered a kind of golden mean in Kabbalah, corresponding to the Sefirah of "Adornment" (Tiferet) being part of the "Middle Column".

This was the day after my therapy session and I started to see myself as a thread being woven into a grand fabric. The next day the interview went very well and yesterday I got the call that they want me and are very excited to begin working with me. Last night I asked Steve "don't you think it is interesting that in one week I got two jobs?" He responded, "Yes and not just any two jobs but jobs that meet all of your expectations and needs." We continued talking and it came out that both my desire to be a part of a creative environment and a spiritual one has been fulfilled! Do you see this? I am now headed down a path of creativity, individuality, spirituality, learning, and self growth. On the Kabbalah Experience's website their header reads "Reflecting the Authentic Self". In the interview, they said that I would be assisting people to improve and enhance their lives. That this organization's goal is to actually help change the world (or people in it) into self-actualized human beings. I am so jazzed about this! And I get tingly and almost creeped out when I realize that this is really all a part of my soul's journey. Can you say, WOW!!!

Okay, so I also want to share with you an experience I had last week. Zoe was outside and she was asked "to help daddy with the hose". When she completed this task, I said "Zoe that was so good, you are such a good helper!" She kinda stopped and thought about my words and then said "thank you mommy", and came and gave me a huge hug and said "I love you". When she paused I swear I saw every cell of her being swell while absorbing the praise she had been given. At dinner I told Steve about my observation and then said "you know instead of taking in and absorbing praise, I deflect it. But criticise me or even say something that I can construe into criticism and I take that in deep to the soul level". He acknowledged that I was correct and that it was a "learned technique". Then I said, "I want to learn by Zoe's example, how to take in the praise and let the criticism drop." It is so grand to have Zoe as a teacher in these lessons. I hope you are able to learn from the children in your lives as well. They have so much to teach us!

So the night before my therapy session, I was putting ZG to bed and my eyes locked on Alex's leg braces in the shoe organizer. I had such a strong desire to go and hold those braces. I had to fight this impulse because I knew it would upset Zoe who was on the verge of sleep. I had planned to take them to my counseling session but had to rush out the door. So next week, I plan to take some of Alex's clothes and definitely those braces and just hold them for the first time in a long time. I know I need to do that. I'll let you know how it turns out.

Okay, that's everything, I think. I will keep you updated!

Much love to you and yours!
God bless!
G

Wednesday, July 9, 2008 - 31 weeks

Hi All. Summer is flying by for us. We just returned from a visit to my hometown. We had a great visit and Zoe really enjoyed being with her extended family! We spent most of our time at the Fat Boys Ranch near Lake Tenkiller. Lake livin' is grand! We had such a great time on the water. We were able to see fireworks from the boat. Zoe got to feed fish and float in the water. She even drove a Jeep! Of course it was her cousin's mini-Jeep but she did not care. She really enjoyed having a big boy to play with all the time. Evan also seemed to enjoy the company as well. It's visits like this one that make you want to win the lottery and buy a plane so we can be with family more often.

I had a few moments of melancholy on this trip too. My nephew has grown so much since I saw him in December. It made me wonder about Alex. What would he look like now if he had been tumor free? How great it would be to see him enjoying his family and the new experiences! When we got home, I felt like I had left him behind. I had that same experience in a dream that night and it was so horrible that I woke myself up and stayed up. Then I found a video of one of Alex's physical therapy sessions. After opening and closing it a few times, I watched the video. Alex was so sick but he's laughing and working hard. It was so great to see him move and smile and laugh. It makes my body ache to hold him though.

So about three weeks ago, I started acupuncture to help me with my constant back pain and overall "well being". The first session had a huge impact on my system. So much so that I bought a pregnancy test. Of course, the results were negative. But for the day and a half that I thought I was pregnant, I was on cloud nine. I so want to meet another one of our children. We have great children and I adore being "mother" to them. It seems to be my calling. Steve is not on the same page as I am on this topic so it is a good thing that things are back to normal. We had decided to stop all conversations for six months a few months ago. I was driving us both insane. Then Steve came to me and said that if Zoe said that she wanted a sister or brother then the discussion could be rekindled (so to speak). Well, I knew not to say anything to Zoe because Steve is way to smart for that to fly! A few weeks later, we were all watching television and I was knitting a baby blanket for our neighbors; Zoe saw a baby on tv and said "I want a baby." I then said, "Zoe what do you want?" And she repeated, "I want a baby." I then asked "Dad, did you hear that?" to which he replied, "Yes, but that does not count!"

This exact conversation happened again a few weeks ago and Steve was right there, scowling at me. I have no idea what the universe wants from me/us at this point. I just know that if it is meant to be it will be and I am not going to worry about it. I just really loved that feeling and have since tried to find it everyday. There is an author out there that talks about "having fun everyday" as one of several steps to a good life. I know that when I laugh and play, I feel so much better. Zoe and I have come up with this great way to swing together. Almost everyday since we have had our "swing date" and she just "wee"s and smiles the whole time which makes me respond in the same way. It is great! I highly recommend that each of you set aside five, ten, sixty minutes a day to just have some good ole fun. Try dancing, singing, walking like an Egyptian! It really helps change your day!

Okay, well that is a good note to leave on. I hope you are all having a wonderful summer. I hope you find a bit of joy in every day!

Much love!
G

Wednesday, June 25, 2008 - Update

Hi All, I apologize for the reduced number of postings. Summer has been quite busy. Can anyone believe we are almost done with June and I have actually seen Christmas decorations in two stores. Unfortunately, Father's Day coupled with the brain surgery of a close relative sent Steve into a funky spiral. He was able to come out of it on our camping trip this past weekend. Also, the surgery was a success and the prognosis is very good! Thank you all for your prayers and support.

Our camping trip was really great. Steve took Friday off and we were able to head out as soon as we picked up Zoe from school. Friday night was mostly just spent setting up and getting to know the terrain. Then on Saturday, we headed out for a hike that ended up being over six miles. Zoe was a real trooper on the hike and having a kiddo backpack was a real life saver. At one point, when she had worn Steve out, I ended up putting her on my shoulders and carrying her up the mountain! The reward was a beautiful rest at some spectacular falls/river. The water was ice cold and the sound of the river was mesmerizing to me (and Zoe). When we finally got back to our tent, we all took a great, long nap! We all slept really well up there. I was surprised. I love my ThermaRest air mattress and down sleeping bag. Our tent was great too! On Sunday we took a two hour horse ride. Zoe was great for the first 15 minutes then she was very uncomfortable and distressed by her constantly slipping cowboy boots! Once we got that situation under control, she had a great time. Of course just about an hour and a half into the ride, it starts to rain. Mountain rain is very uncomfortable on top of a horse with a screaming three year old and no rain gear. I do NOT recommend it! Luckily we got to the stables quickly and Zoe was ready to go again!

So I'm okay but I am freaking out on how to make ends meet. I really need to return to work and bring in some income, but that thought does not make my heart sing! It actually makes it sink. I really want to honor Alex's life with my time, attention and energy. So far the most we have done is the Steps N Strides Walk and in August, I will participate in the "Relay for Life" to benefit the American Cancer Society. I know I need to give myself time, but I don't want to lose our house in the process of our grief! This sucks on so many levels for so many people and I'm afraid the end is not in sight.

So did you know that my brother is in Afghanistan? He is part of the 101st Airborne and he is the pilot of a Black Hawk helicopter. His birthday was Saturday and I just missed his phone call this morning. I know many Americans are anxiously awaiting to have their loved ones home. I am most definitely one of them. Joe has a lovely wife, Courtney and an incredible little boy, William. I can't wait to see them all again. You may remember we met for the first time when they came out for Alex's service in December. What was so amazing about that was how quickly and easily it was to be around each other. There was none of that "awkwardness" one would expect when meeting a sibling for the first time in thirty something years.

So the play space is coming along quite nicely. We laid sod down three weeks ago and Zoe's house is mostly complete. I am awaiting the items for her "sensory garden" to come in to finish off the space. Steve still wants to finish the stage as well. So far the favorite item is the water feature. Zoe loves to be naked and splash around. It is almost more of a toddler tub than a water fountain.

I hope you all have a happy holiday.

God Bless!
G

Wednesday, June 10, 2008 -Zoe's Questions

Hi all. I want to share a conversation Zoe and I had the other day.

Z - "Mommy, I don't want to watch this show. It's Alex's show."
G- "Yes, it is one of Alex's favorite shows."
Z- "Mommy, Alex come home soon?"
G-"No Zoe, Alex is dead. He can't come home. And that is very sad."
Z- "Alex cross the street?"
G-"No, Alex did not cross the street. Remember, Alex had a bump?"
Z-"Alex bonk his head?"
G-"No Zoe, Alex did not bonk his head. Alex's bump was inside his head." (tears flowing now)
Z-"I kiss it!"
G-"Zoe, that is very sweet. But you can't kiss Alex's bump. It is very sad that Alex is not here. But he loves you very much and will always be with you here (point to her heart)."
Z-silence
G-"Would you like to come outside and see your new playhouse?"
Z-"New playhouse? Oh YES, YES, YES!!!" (runs to back door)

The next day we had almost that exact same conversation again. Zoe really wants to make sense of this and she really, really wants her brother back. She wants to "kiss it and make it better." It is very sweet and very sad.

I have to say that I am doing better. I booked three camping trips for our family this summer. Our July trip we will be accompanied by five other wonderful families, all with young children. I'm so excited. We invested in some new camping gear and can't wait to get to the mountains for some R and R. We never got to take Alex camping. We did do hikes with Alex and several car rides. But it has been over two years since we really spent much time away in the mountains.

In addition to the camping trips, we are planning a trip to my home town for some fun lakeside living!! My family is going to be STUNNED when they see how Zoe has grown. I can't wait to get and give big hugs from them all!

Steve and I have been working hard on the back yard and specifically the play space. We should have it pretty complete within a week or so. We got a great play house kit for Zoe and friends assembled this past Sunday. She is so happy with it! We are in the process now of building a platform for it and painting it. I hope you like the picture!

Okay, I'm going to meet a girlfriend in a few. God bless you all and thank you for your continued support and wonderful comments.

G

Monday May 26, 2008 -My First Memorial Day

Good Morning. So the weekend has been a good one so far. Zoe had a play date with a new friend. He is five years old and they were fast friends at their first meeting a few weeks ago. Zoe absolutely loves following this boy around and playing with him. He is very sweet and just great to ZG. I know it is "co-dependent" of me; but I am happy when she is happy! I think all parents like to see their child(ren) smiling! I know I do!

Saturday, we kicked butt and took names on our front yard!! Our yard has always been an eyesore and on Saturday from dawn til dusk we whipped that puppy into shape! It looks better now than it has the entire six years we have lived here. It is a pleasure now to drive by the house and to open the door to friends. Needless to say, yesterday we were utterly exhausted!

Late yesterday afternoon, we headed up to Erie to be with some dear friends up there. It was a very laid back time and just what the doctor did not order! We were so excited to have ZG asleep before nine o'clock that Steve and I took the opportunity to watch a movie "on demand".

You see, I have fallen in love with Eddie Vedder's song "Hard Sun". I found out yesterday that he wrote and performed this and all of the other original songs for the movie "Into the Wild". So Steve and I watched it last night. It is the story of a young man that travels to Alaska after his college graduation. It turned out to be a VERY intense movie. I was sure I would have nightmares due to the subject matter. I did not have nightmares but I can't get this story out of my mind this morning. I just may watch it again! You see this young man is a "lost son" and during his travels to Alaska he becomes soul-bound to two characters that have each lost a son (via different means). The lessons of karma and "oneness" is profoundly exhibited in this movie and I must say very moving.

So today is Memorial Day. We have decided to update our prayer flags in front of the house today. You might remember last year's "Pavers and Prayers" party; where friends came to the house and made pavers for the play area and prayer flags for the temple chimes. It was a great day for everyone. The prayer flags are supposed to be granted when they fly off the temple chimes. Unfortunately, I used faux twine that is obviously indestructible and the prayers are just getting torn up in the wind. So Steve, Zoe and I will be making new prayers today and attaching those to the temple chimes with real twine.

Another way we will be honoring Alex is by sponsoring a Cambodian boy named Loun through the International Childreach Program. Steve and I just made this decision about five minutes ago but already I can feel my maternal warmth rising and releasing little specks of hope and joy in my body.

I hope today is a good day for you. We have had perfect weather the last two days but today will be cooler and cloudier. I'm glad about that. It seems appropriate. I have never really honored or even thought about anyone much on Memorial Day before. It has always just been a day "off" to me. This year though, everything has changed. I hope to use this day for healing and prayer. I hope to have a few milliseconds (or more) in the moment; enjoying the beauty and preciousness of life and being. I pray you do too.

God Bless.
G

Friday, May 23, 2008 - One Day at a Time

Hi all. So Tuesday marked six months without Alex in our lives, physically. I have actually felt his presence more lately and had a vision of him the other night. I asked my therapist if I was insane and she said "most certainly"! No, she didn't but that would have been funny, huh? Actually, she said that after such a "trauma" visions are actually quite normal. With that being the case, I wish it would happen again. I do so miss our beautiful boy. Every day without him is such a struggle lately and time is not making the pain any easier to handle. If anything, I feel things are getting worse. In lieu of that and recent events, I have seriously curtailed my alcohol intake. While it makes great sense to want to medicate these horrific feelings, it ends up actually putting me in a great deal of danger. I have come to understand that alcohol, in addition to lowering your inhibitions, also lowers your "filters". You see when I drink in excess I become so depressed that I forget how much I have to live for. I talk and think about being with Alex and at times it has become pretty scary for me and Steve (and my therapist). I have also recently learned that my medications are not helping (when mixed with alcohol). It seems that the anti-anxiety medication I am on actually increases the likelihood of addiction and the effects of the alcohol (as well as seizures). So when I say scary, I mean SCARY!!!! Wish me luck, strength and peace. I need all of them.

In addition to that struggle, I have not been to exercise class since Monday. During a backward lunge on the step, I heard a loud "pop" and immediately felt pain in my left calf muscle. It was so bad I had to scoot down the stairs to get out of the gym. I did the "R.I.C.E." thing Monday and the pain is greatly decreased but I can still feel the pulled muscle. I plan on cleaning the house today as my workout!

I want to take a moment to say "Happy Birthday" to Evan Winston!!! Evan is such an incredible child and we love him sooooo very much. I can't believe it has been seven years since his birth. Happy Birthday Evan! You are VERY SPECIAL and VERY LOVED!!!!

I would also like to encourage all of you that are in the area to join our family at the Kyle O'Connell Foundation's annual Steps-n-Strides Run/Walk on June 1st. We will be walking to honor Alex along with other families that have dealt with pediatric brain cancer. You can register at www.kyleoc.org !! Hope to see you there!

Finally, I would like to ask for your prayers. A member of our family is having brain surgery today and we are all just reeling!! It seems that we just can't catch a break right now. Please pray for the doctors' steady and skilled hands; the children's peace; the patient's easy and fast recovery; and our family's "break"!! We need one!

This weekend is Memorial Day. We plan to work on the yard and play area over the holiday and try to honor Alex in a very special way. I hope you join me.

God bless!
G

PS- Make it a GREAT day!!!

Friday, May 9, 2008 - Druthers Day

So I can't tell you how hard life has been since Tuesday night. You see while I was reading Zoe her bedtime story, I realized that this is my first Mother's Day without the son that made me a mother. How can that be? Why must this be? Until last night, I was in a serious depression. I just could not imagine how I was going to live through this pain and anguish. Last night I realized that I could call upon my support system for help and that is what I did. So after three tearful talks I feel like I can do this and realize that I must. There really is no other option. Zoe is a wonderful child that I adore. Alex would never want me to give her less than my best. So to honor him, I will get up on Sunday and open the small box Zoe brought home from school today and feel her hug and soak up her love.

I wish all of the wonderful mother's I know (and the ones I don't) a spectacular Mother's Day. Please be kind to yourself and appreciate the beauty of your children (even if they are no longer children). I know Alex would want you to!

Much love and God Bless!
G

Wednesday, May 7, 2008 - Weird Space

Hi all. Zoe's birthday party was a success and if anyone wants some "death sticks" aka: mac 'n cheese on a stick; just let me know. We have tons frozen in the freezer! We also have a good portion of a keg of beer left over, even after lending it out for a neighbor's party. Needless to say, my pants are getting a bit snug! Zoe had fun but only after the party died down a little and she and a few friends headed over to the playground. I think she was overwhelmed by the amount of people. We also think there may be some real emotional baggage for Zoe related to birthday parties, since we had three bday parties to celebrate Alex turning 5 yrs old.

I know ZG misses her sweet brother. Every time she talks to her grandmother, or a departing parent, she says "you come back, okay?" We always are very reassuring that we will be back. The other day, we were in the nursery and Zoe said "Alex come back soon!" I had to reply "no honey, Alex is not coming back" and her light and bright energy changed immediately to an angry and dark mood. It was heart wrenching.

Yesterday marked 22 weeks without the most wonderful, beautiful little boy I have ever known. I miss him so much my body still aches with the pain of it. On Friday night, we decided to have some family time outside. Steve built a fire in the outdoor fireplace and the three of us sat outside. It was great and very lonely at the same time. Alex loved sitting by the fire. He loved helping his dad stoke the fire and build the fire. It was one way we could get him outside when he did not feel good (which was a task toward the end.) We have so many good times around that fireplace. It was very bittersweet. I guess that is how it will always be from now on.

I can't decide what to do with my life when I grow up. I just wish it would come to me with the energy and enthusiasm to make it a reality. I have too many interests and seem completely uninteresting at the same time. I saw so many friends at the bday party that asked "so what's up?" I really had no answer that was of any interest. How do you say, well, I'm just trying to not cry today, to not completely break down and melt into the ground today, to maintain a semblance of normality and acceptance of a life without my son. No one really wants to hear that. I have had friends call and email for lunch and I just do not have the energy to call them back. I am lonely, but don't really know how to be around others right now. It's a whole new world for me but everyone else is living the same existence with the progression of time.

I did think of a great story to share with you all. I finally found a fabulous hairdresser. We met a few years ago and I adore her. At our last appointment she told me about how Alex and I have changed her father's life. You see, he survived the death of his brother, at an early age. It was a tragic accident and was not discussed during his lifetime until she talked him into pulling out the pictures and remembering the precious brother he had. It has brought a lot of healing to this family and I have to think that Alex's spirit made it possible.

Well that is about as upbeat as I can be right now. I am going to have some hot, keg beer!! Come and join me!

Much love and God Bless,

G

Tuesday, April 29, 2008 - 21 weeks today

Hi all, today marks the end of 21 weeks without Alexander. I have to say the days since my last post have been quite trying for me. Last Tuesday I got hit with a triple whammy. It was the five month anniversary of Alex's passing; I met with my personal therapist and attended the hospital's parent support group. At the group, we shared the video our neighbor made for Alex's Memorial Service. I had seen it a few days prior, for the first time since the service, but it was Steve's first time to see it since then. Watching this wonderful video of our beautiful boy over his five years was excruciating for me. It makes my skin ache to hold and touch him. I know it was hard for Steve as well. He did not speak at all during the session.

After Linda left, my body immediately fell ill. I was knocked out by a bad cold, sinus infection etc. When I started to feel better, Steve and I worked in the yard the entire weekend. We have started a "rainbow garden" for Alex. As a result of all of the hard work done in the yard, come Monday, I threw out my back buckling ZG into her carseat. So I was down and out for about 2 days, then very tentative with all other activities up until yesterday. I finally got back to my workouts yesterday morning after two weeks. It felt good even though it did almost kill me.

So last Thursday, I had a job interview with three Realtors in the neighborhood. They were looking to hire an assistant. I just found out a couple of hours ago, that they chose someone else for the job. I was a Realtor, when Steve met me, and I loved helping others find their homes. It was a dream job for me. I knew, when I moved, that I did not have the contacts nor the knowledge of the area to become a Realtor here (besides the competition is fierce and the market well-saturated). The assistant job was full-time and I did have some anxiety about the time commitment but really started getting excited about the prospect. So now that I know I did not get this one, I think I will try something else. I have always wanted to start a "home staging" career. You know, making a home appealing to buyers via design. Well, if I can stay on this up swing, I want to put together a brochure, print up some biz cards and start working the market. I love interior design and ,while I don't have a degree, I do have some skill and I feel I could do a great job. So send me some good mojo and the energy to make it happen!!

Another thing that is helping me get out of the funk of the past few weeks is Zoe's bday. Zoe will have her birthday over the weekend and I love throwing parties. So I now have a project that is helping me keep busy and focus on the positive. I just hope the weather holds out for us. It is supposed to snow this Thursday and Friday! I know I am ready for the warmer, Spring like temps of the season!

I also want to thank our friends that have opened their homes and hearts to us over the weekend. You may not know it, but spending time with your families, has really made a huge difference to my emotional state. So thank you!! It was great seeing Zoe play with her new and old friends, and laugh, and be happy. I know she misses her brother so much, and feels very lonely at times; so it is great when she can socialize with other kids. And even better, when Steve and I can have fun too!

Okay, well tonight is the 8th out of 9 parent support group sessions. I really, really don't enjoy these sessions. You see, while I am learning something about grief, I endure hearing about some truly horrific tragedies of the other parents. The only reason I continue to go is because I want to support these mothers (and one father). I truly do care about them and their families. I also get to hear Steve's side of the story and his struggles/opinions during these groups. But, all that said, I won't miss them when they are gone (the sessions, that is, not the people).

Okay, well, I should end this. I want you all to know that your comments really help me through my days. Please keep them coming. Somehow knowing that I am not alone and that our experience is shared with persons, known and unknown, keeps me going. I think of you all often.

God bless,
Love,
G

Friday, April 18, 2008 - New, New Normal

Hi Everyone,

So since Tuesday, Steve, Zoe and I have embarked on another, new, "new normal". For the first time in our lives, we are living as a threesome. I have to say it seems quite strange and very uncomfortable to me. Alex's presence is here but at the same time it is NOT here and we all miss him very, very much.

Yesterday, Steve was asked to speak to his fellow co-workers. His company will be preparing 24,000 gift bags for kids with cancer this year. Steve talked about the first time we received a gift. It was when Alex had just had the brain biopsy and he was in Intensive Care. I will never forget it. I was holding Alex in the rocking chair and the ICU nurse brought in this green piece of luggage resembling a turtle. Inside it were books, games, toys, bubbles, voice recorder and small DVD player. It was an amazing gift. I remember I felt so relieved that someone was thinking of us that knew what we needed even before we knew. I felt that we were not alone in this ordeal and that there is hope. This wonderful gift came from the Gabby Krause Foundation and you can read about Gabby at www.gabbykrausefoundation.org. So it is my wish that each of the 24, 000 gift bags that will be handed out have a similar impact on the children and families receiving them.

So I wanted to tell you all about "thawing". Thawing is a term a father who had lost his child, came up with to describe the grieving process. Until you go through a loss like this it is almost impossible to know what the experience is like. Thawing refers to the process of melting away sadness, despair, and sorrow so that you can get through a certain time period (varies constantly) feeling okay, like you can get out of bed. Then you realize that while you were thawing another layer of your sorrow has reached the surface and you are back in the pits again. Utter despair, angst and sadness consume you. You don't want to move, to talk, to eat, to drink, to breath. But you do and eventually, with help from family, friends, counselors, children, you find yourself back in the "thawing" experience. Unfortunately, you never know how long this will last, so you do your best to enjoy the time and to honor your child while you can. I think we all know our deceased children would never wish us to be in pain and sorrow. Children are all about love and joy and laughter and BUBBLES!!! Bubbles of wisdom that we have forgotten and have to relearn.

So I hope that helps you get some what of an understanding of what this confusing, ever-changing grieving process is like (for me, at least). It truly sucks and I don't recommend it to anyone! So, go enjoy your day. Be in this moment right here, right now. Listen to the far off birds sing their song, the squirrels scampering in the tree limbs, the wind talking through the leaves. This is all that really matters. You, Now, Here!!

God bless,
G

Tuesday, April 15, 2008 - 19 weeks without Alex

Hi everyone. This is going to be a downer post so continue reading at your own risk. I'm quite sick and I think it is just from all of the stress/hell I have been through these last few weeks. The past weekend has been a real roller coaster for me as well. You see, Alex and Zoe's school, gave us tickets (thanks to Ms. Grace for asking and everyone involved in that decision) to the annual fundraising event which was a silent auction and casino night combined. We had not planned on going since we had blown our "wad" on the honeymoon. But when I told Steve about getting the free tickets he said he would go. Then on Saturday afternoon, his tune changed and he ended up asking me "why do you want to go so badly?" I thought about it and replied, "Have you noticed how quiet the phone is these days? The only person that called me this week was you and that was yesterday. I miss our friends. I really want to go to see our friends and reconnect with the school. They have been a wonderful source of support for us." With that said, and the tears in my eyes, he conceded to go.

The night was a huge success for both of us too. Steve did very well at the Black Jack tables and I had a lot of laughs with some dear friends old and new. The only problem was that I wore these high (did I say HIGH) heeled shoes and could not find a seat all night. My feet still hurt! After the party, we tried to hook up with our friends, but could not find them and ended up having an incredible dinner at Il Posto. If you have a special occassion and like authentic, fresh Italian food, please consider this place. It is just too good and the staff is very friendly and fun!!

Okay, so you are thinking, she's got sore feet what is so wrong with that, right? Well then came Sunday. On Sunday, I visited hell in the form of a Memorial Service at The Childrens' Hospital. Again, Steve tried to talk me out of going, but I refused (I should have listened this time). So Linda and I went. OMG, torture!!! Absolute TORTURE!!! There were so many families and so many beautiful children that are no longer a part of this reality. As soon as I sat down, I noticed a mom next to me crying and the service had not even started. Then I started looking at the program and reading the words to the poems and songs. AUGHHHH!! I started crying. When the slide show started, Alex's picture was the first one and that was it for me. Stick a poke in me I'm done!! (I know it is "poke a stick in me, I'm done," btw.) Then the mom with her little girl (about 4 or so) saw their baby and the little girl said "there's (name of child)" and the mom acknowledged her as she was weeping. Then the little girl began wailing. Wailing with such pain and sorrow. My heart was breaking all over again, because I wanted to wail right there with her. Her mom carried her out and the wailing continued for a while.

So at some point during the service, they gave the moms a rose and a glass votive holder with a flameless votive in it. All the time I 'm watching these parents come up and get their "prizes" I'm thinking, "so your child dies and you get a flower and a candle, RAW F'ing DEAL!!!" I really wanted to run out and just go but instead we stayed until the end, ate some cake and talked to a parent from the support group. I also got a balloon for Zoe and a glitter wand too. Then we headed home.

When we got home, Steve and Linda started preparing dinner for the evening. We were having some neighbors over to say "good bye" to Linda. Again, it was a fabulous time, but my experience was blackened by the hell of the afternoon. So I drank some wine, listened to the chit chat and did the dishes. Steve built a nice fire in our outdoor fireplace and the fun continued outside. Zoe would not sleep so she ended up outside as well. One funny thing about that- when Zoe saw the moon she said "moon, mommy, moon!" I said, "yes, la bella luna" and she said (for the rest of the night) "that's not a balloon, that's the moon, mommy!" You get it? "la bella luna" sounds like "balloon". Anyway, it was cute.

Then comes Monday!!! Oh geez! Due to our computer crashes, etc. we were only able to get our accounting system up and running on Saturday, thanks to Steve's diligent work. So Monday, I got to enter in every bank transaction for the year 2007. Well, if that was not like walking down memory lane!!! Again, torture. Every McDonald's Happy Meal we got after chemo; every Snooze brunch, every purchase on the Make A Wish trip, every meal at the Red Wagon Grill ( hospital's cafeteria) was relived. I was completely drained by the end of the day. I sat at this computer for over 8 hours yesterday.

Then to top it all off, Linda left this morning. She is going to be missed so much! Toby (her dog) not so much, but he is part of the package and we love him. Roxie is scouring the house trying to find her friend!!! So you can see why my body has decided to let illness take me down, can't you?

Just to polish this off. I want to share a reading from the service. It actually made an impact on me and I want to share it. So here goes!

To Honor You
By Connie Kiefer Boyd

To honor you, I get up everyday and take a breath.
And start another day without you in it.

To honor you, I laugh and love with those who knew your smile and the way your eyes twinkled with mischief and secret knowledge.

To honor you, I take the time to appreciate everyone I love. I know now there is no gaurantee of days or hours spent in their presence.

To honor you, I take chances, say what I feel, hold nothing back, risk making a fool of myself, dance every dance.

You were my light, my heart, my gift of love, from the very highest source. So everyday, I vow to make a difference, share a smile, live, laugh, and love.

Now I live for us both, so all I do, I do to honor you.

God bless!
G

PS- The first pic was taken the Friday before Alex passed at the Make A Wish Holiday Store/Party at TCH. The second and third pics are from Thanksgiving last year and the last one was taken over two weekends ago.

Friday April 4, 2008 - Vacation details

Hi everyone! Well we survived our Honeymoon! It was absolutely FANTASTIC!! The hotel that we stayed at in Mendocino (actually little river) was the location for the movie "Same Time Next Year" with Alan Alda and Ellen Burstyn. I have wonderful memories of watching this movie with my mom during my childhood and it truly is one of my favorites. If you have not seen it and are in the mood for a romantic comedy/drama I highly recommend it!!

After Mendocino, Steve drove me to San Francisco to meet my sister and he headed back North to his college fraternity's charter dinner/weekend. My sister and I had a fabulous time in the big city and we realized the first night that while we have been in the same room over the past 18 months; we rarely had any time to be sisters. It was great to reconnect in such a wonderful spot. We stayed at a nice, European hotel in downtown and on Saturday we went to the Japanese Tea Garden. I have such Spring Fever right now. Everything was so lush and green, as you can see by the pictures I have attached.

Zoe and Linda had a great time and Zoe was okay with our absence until we called and reminded her that we were not there. I have to say though, it was wonderful to come home to her and get the biggest, longest hug ever! She even looks taller and her hair is definitely longer! Somewhere over the break, she started this faux crying thing that is just pathetic and actually kinda funny. She pulls it out over the littlest thing and it just seems so strange to see her like that. So I guess the trip did have some effect on her. Overall, I know she had a great time with all of her friends that made it over and set up play dates with her.

Our next challenge is Linda's departure. After six months she has decided it is time to return to her home. We will miss her so much! She plans on returning later in the year but in the mean time she will be missed!

So I want to tell you about the little, green Buddha in the pictures. Do you remember (did I write about) the Buddhist Monk, Eric that came by the house a while back? Well, after talking to Steve and I, Eric came in to meet Alex. At that encounter, he gave Alex that little Buddha. Alex really was not that impressed with the little Buddha since it did not resemble Spider Man at all, but I made sure we kept it around. Ever since Alex passed, I carry that Buddha with me. It dawned on me at the Japanese Tea Garden to actually put it in some pictures since I saw Alex in every beautiful flower and green grove. So I hope you enjoy the pictures. I just may have to travel the world's botanic gardens and publish a book some day!!

Next time, I want to tell you all about the parent support group "Colors of Healing" that we started a while back at Children's Hospital. Right now is not the time, but I will tell you all later.

I hope your Spring is bringing much beauty to you! God bless!

Love, G