Friday, December 21, 2007

Friday, December 21st - Getting Harder

So we have moments of "normalcy"; moments of confusion; moments of distress; and moments of woe and despair. I look at the Alex and Zoe's last Christmas picture taken November 2006 in which they are standing, holding hands and smiling for the camera. That seems so long ago and far away but also just like yesterday. Oh how I long for Alex to be a part of our holiday. It's just too hard to do this without him.

There is no refuge either. I can't go out. I can't stay in. Yesterday his fingerprints on the backseat car window made me weep for him. I want to hear his sweet voice. I want to make him oodles and oodles of noodles in a river of sauce with a mountain of cheese on top. I want to hold my baby boy. I want to see his beautiful face and tell him how much I love and cherish him.

Tonight we will have our "Christmas" here. Zoe is getting an "Alexander Girlz" brand baby doll with brown hair, brown eyes (just like her). Nonni got her a doll set including a baby rocker, high chair and stroller. I also got her a sock monkey, but I can't find it. I can't tell you what I got Steve since he reads the blog. But it is something he has asked for and will enjoy, I'm sure.

This week has been very difficult. I'm afraid it is not going to get any easier either. I'm glad we are leaving town but also dreading it. I just hope I don't ruin Christmas for all of my dear family and friends. I try so hard to remember Alex's lessons. To enjoy every moment and to be present in the moment. To love and smile. To play no matter how difficult it might be to do so. To listen to music that you love and dance whenever you can. To give and get big hugs. To say "I love you" to everyone you care for every time you see or talk to them. To enjoy the sun and the moon and rainbows. To ask for help when you need it and never do anything you really don't want to do. To eat what you love when you want it, but not to be gluttonous about anything. To honor the day and be grateful for everything in your life, even the bad stuff that makes life worth living!

I think I could go on forever, but I'm feeling better now, so I will stop. Happy Holidays to you all. I love you.

God bless.

G

Wednesday, December 19, 2007

Wednesday, December 19th - Good Morning After All

Collective Soul has been one of my favorite bands for a very long time. As I was listening to their new album "Afterwords" I felt as it was written for us. The song below says how I feel many days and I wanted to share it with you. I highly recommend the album as well!


"Good Morning After All"


Yeah you give up some days
When the tears they must flow
But God is always your strength

The only strength that you know
Now everything starts to fall in place

As you wake just to crawl
Still you say good morning after all
Yeah you stand just to fall
Still you say good morning after all

Yeah you questioned this life
Sure you wondered about love
But you swear there's always hope
Always hope from above
Now everything starts to fall into place

[chorus]

It's just another breath
It's just another breath you say
It's just another step
It's just another step today

Monday, December 17, 2007

Monday, December 17th - This is Too Hard

Thank you all for your prayers and kind words. I love to read how Alex's life has made the world a better place. I too do not know where the energy comes to face each day. I have to force myself out of bed in the morning and into bed at night since sleep is not coming easily to me. Alex's presence is all over the house. I think he is playing with us in his very special ways. I miss him so much. And now I am crying.

Last week on the ABC Nightly News program, Joe Biden was being interviewed. He lost his wife and daughter in a car accident early in his life. His 2 boys survived and he talked about loss. To paraphrase his words he said "suicide is a rational option, if the love you shared was as great and profound as you believe then why would you want to re-establish your life?" (to hear the interview in its entirety go to www.abcnews.com and search "joe biden"). I have to say that living without Alex is too hard at times but I don't want to check out. I just want Alex with us again and always. I miss his smile and his laugh and his big brain! I want to hold him and stare into those beautiful eyes; watch him sleep and play a game with him. My heart has never known unconditional love before Alex and Zoe. Alex was the first to show me how grand love really can be. I knew when I met him that my life would never be the same again.

Mr. Biden also talks about feeling guilty when you realize that you want to live. He talks about his father telling him "get up, get up". His father told him that success is not measured on how many times you are knocked down but how quickly you get up. He also says you have to focus on what you have. I know this is an absolute truth. So many of us (myself included) focus every second of every day on what is wrong or what we don't have that would make the next second better. Well the truth (as I see it) is that when you get that "thing" your life is not better, because you have programmed your mind to always be searching. Each of us search for something different but the result is the same - feeling unfulfilled, unloved and empty. I have a huge hole in my soul and I know that the only way to recover from the loss of my dear boy is to finally and wholly love myself.

It always boggles my mind to hear so many people talk about me with such admiration. I truly feel that I have done only what any parent would do and that is love my children and do the best possible for that day. That does not seem extraordinary to me. I am starting to listen more and learn from you all though. So many of you can't be wrong, huh? So, with baby steps, I am going to try to feel Alex's unconditional love for myself. Wouldn't that be a grand way to go through our days; if we loved ourselves unconditionally and therefore knew that the rest of the world was hurting just as we hurt and love and kindness were the answer to the crisis at hand? Wow! what a concept!!!

Okay, so Christmas is coming and I realized yesterday that no where in our media, advertisements, or daily lives do we talk much about the true meaning of Christmas. It is no longer "correct" to do so. I feel our children only know it as a day that they get gifts and that is it. I'm not saying that everyone should go to church, not by any means. But shouldn't we talk about giving and love and the reason for Christmas? Shouldn't we teach our children about the origins of this holiday? I realize this would be different for every family and I also think it would be grand if we all understood Kwanzaa and Hanukkah too. Perhaps learning how this holiday is celebrated all over the world would be a better idea than just emptying our pocketbooks, creating more debt and filling our homes with stuff. Okay, I'm done. Please forgive my soapbox rantings!!

I remember our second Christmas with Alex in 2003. Alex was one and Steve and I had had a very difficult year financially. We only had money to buy Alex one gift. I thought long and hard about what I wanted to get him. Since he loved music so much, I decided to buy him a kid size piano. Tuesday Morning advertised one and on the day the store opened, I got up at the crack of dawn, poured some coffee and drove to the store. I wish I could share the feeling of joy and happiness I felt that morning. I was so excited as I stood outside the doors waiting for them to open. As I drove home I thanked God for helping understand that I was blessed to have such a beautiful family and that the love we shared was much more important than the giving of gifts. I still think of that Christmas as my favorite.

This year's Christmas is not something I am looking forward too though. We will be with family and I am trying to focus more on that than Alex's absence. I'm pretty sure though that I will be overcome by sadness and grief. The question is how long will it last and will I be able to pull myself out of it? I'm sure I will. Zoe Grace absolutely demands my attention and she constantly reminds me of what I have still to live for.

Well, this is too hard but with your love and prayers we'll make it through.

God bless!
G

Friday, December 14, 2007

Friday, December 14th - The Blur Continues

First I want to thank you all for your prayers and kind words of support and love for Alex and our family. I know it has made a difference in our home. It is absolutely awe inspiring how Alex has affected this world in such a positive manner. I am so amazed that our little boy could accomplish so much in such a short period of time. He is such a Super Hero!!!

So, this last week and a half has been a blur. I remember lots of hugs, lots of uncontrollable wailing, physical pain, a beautiful ceremony, flowers and an unexplainable feeling that I have lost something very important and just can't find it. It's like a panic. Where is it? How can I live with out it? What do I do now? Losing Alex's presence in our daily lives has been traumatic. I walk around the house doing stuff until the grief grips me and all I can do is hold down the couch. I have watched many movies the past few days and don't remember much about them. One I do remember was "Catch and Release". It was filmed in Boulder, CO and to honor her dead fiance, the main character creates a "peace garden". I thought that we should create a "hope garden" for Alex at the Children's Hospital. Wouldn't that be grand? Something really inspirational and fun for kids. I also watched "Edward Scissorhands" and it just occurred to me that we could have those fun-shaped hedges and trees like in that movie. Children should have a place to go and learn that there is always hope. (Is there always hope?)

You can't imagine how much physical pain I was in last week and the first part of this week. The physical manifestation of my grief and loss was acute and engulfing. A dear friend bought me a hot stone massage that worked wonders for me and I know has expedited my recovery. If you have never had a hot stone treatment, GO GET ONE!!! Coldwater Creek Spa is where I recommend you go too! If you can't do that then get an "essential pedicure" and just relax!

At Alex's service many incredible words were spoken. I remember our neighbor, Kevin, saying that Alex accomplished something every person in the world strives to do and that is to impact the lives of every person they meet. I thought that was a profound statement and very true. Of course, Alex has changed the lives of people he has never met too. That is the wonder of his truth, spirit and love for life.

Alex was cremated on Wednesday. It was my birthday and a very hard day for me. The dogs had gone on a rampage the night before and I found two of the gifts Alex chose for Xmas gifts for his family. Alex absolutely loved flashlights so he got his dad this really cool lantern. He also loved baths and so he got ZG some bath tub letters and numbers. Knowing that he picked out these gifts and also knowing that they reflected his love for his family brought me to my knees. I still can barely contemplate Christmas without Alex. Each day I feel his absence. I also feel his joyful spirit at times too.

Okay, that about does it for me. Steve seems to be handling things okay. Unfortunately, his good friend moved away this week and I worry about him sinking. Zoe Grace asks "where's Alex? Alex in Oklahoma? Mom, I lost Alex?" about once or twice a day. She really misses him and we just keep telling him "no Zoe, Alex is dead." That is what all the books say to say. They don't say where the well of strength is to say it though!!

God bless!
G

Wednesday, December 05, 2007

Wednesday, December 5th - Pain, Agony and Info

Alex passed very peacefully in his father's arms. He awoke yesterday morning with a very painful headache and swollen forehead and right eye. Tylenol did not help and since Alex was crying due to the pain, we started the Dilodid IV. Due to many factors, it took hours to get Alex relief but he was free of pain eventually. His last word was "music". He wanted to change the tv channel from his shows to the "massage music" on comcast (soundscapes).

Alex passed at 11:45am. After that we took him to the master bedroom, bathed him and oiled his body with massage oil. We changed his clothes and put on his Spider Man pajamas. Then I broke down completely and utterly. Then I stayed with him kissing and holding and just looking at his beautiful face. The swelling was gone and he looked so lovely and at peace.

By 3pm the morticians were here to take him away. Steve carried him out the back door. The sky had this eerie yellow tint to it and for the first time all day, Alex looked dead. I think the hardest thing I have ever done is to watch him leave our home for the final time. I broke down again in the back yard screaming at the top of my lungs.

Steve and I were able to compose ourselves enough to talk to Zoe. She went in and said "good bye" to Alex then went to watch Diego. She seemed very sad and mad yesterday and would not sleep until I came in and laid down with her. I woke up at 4:30am in terrible pain. My entire body hurt. I felt as though I had been in a horrible car accident. I got up and took some med they gave me in the ER for pain. Next thing I know it was 7:30am and I needed to get up and get ZG ready for school. I have no idea how I got out of bed but I did and when Nadine came by to pick up Zoe, I was laying on my back in the playroom with Zoe laying on top of me. As soon as she was out the door, I went to lay down in our bed. All morning I felt as though my limbs were made of lead and the pain was excruciating. Finally, I was able to get up and take a divine bath downstairs. All the ladies did an incredible job at making me comfortable. A

Since then I have been to the funeral chapel and made arrangements for services. The fact that I just had to pick out my child's casket is mind numbing. I feel like a zombie as I write this now. I asked Steve this morning if I was still Alex's mother. Since Alex is no longer here to nurture, nourish and hold then how do I call myself his mother?

Here are the details of the services for Alexander Michael Kasnoff:

Friday, December 7th Viewing/Visitation from 5:30 pm to 8 pm at Moore Howard Funeral Chapel; 4345 West 46th Avenue, Denver, CO 80212; 303.433.6425; john.demers@sci-us.com.

Alex's memorial service will be held on Saturday, December 8th at the same location at 10am.

God bless you all. Hold on tight to one another and make sure everyone you love knows how you feel today.

G

Wed Dec 5 - Information

We'll have more details after 4:00 today so until then: visitation will be on Friday and the memorial service will be on Saturday at the Olinger Moore Howard Chapel, 4345 W. 46th Ave.

The family asks that memorial donations be sent to:
Neuro Oncology Research Fund
Children's Hospital
13123 E 16th Ave
Aurora, CO 80045
Attn: Amy Wilson - Box 115

This is Dr. Foreman's facility and your support will help Alexander's friends. Thank you!

Tuesday, December 04, 2007

alex is gone

Tuesday, December 4th - Amazing Kid

Thank you all for your comments. I just got a chance to read them this AM. I did not leave Alex's side much at all yesterday and he is resting now. Alex is absolutely AMAZING!!! He fought so hard yesterday. He was blue at 10:30 AM and fought back from that. Then his blood pressure dropped into the low 40's and we all started saying our good byes. I called my sister and when her husband, who can magically make coins appear from Alex's ears, said "watch those ears"; Alex's eyes opened and a huge smile came over his face. He then woeke up and played Spider Man Wii with his dad!

We are able to keep him comfortable with the robinul (dries up the fluid in lungs) and the Midazolam (anti-nausea, anti-seizure, and anti-anxiety med). When the Robinul stops being able to help him with the fluid in his lungs and he starts gasping for air (most likely scenario) then we have some Dilodid (morpheine derivative) to give him so that he won't feel like he is suffocating.

So the hospice nurse says this up and down can go on for days. I'm sure I can take it but I don't want to. I hope you understand what I mean by that. I will have to find inner resources that are currently unknown to me to survive more days like yesterday.

Both my sister and sister-in-law arrived last night. We are so grateful to have them here! I plan on using some of their resources as well! To top all of this off, our dog (puppy) Roxie is very ill. She has been quite mopey since Sunday night and we all thought it was just a dog's way of mourning. But she woke Steve up crying and whining last night. She has a vet appointment at 10:30am. I hope this is an easy fix (and cheap one too). We love Roxie so much. She has to be one of the sweetest dogs I know.

Okay, ZG needs to get to school. Love and hugs. Keep those prayers coming!!!

G

Monday, December 03, 2007

Monday, December 3rd - Prayers Please

Good morning. Alex is not doing well. Last night he became very frustrated because he could not drink or eat. He even asked that we do his "thrush swab" so he could eat his dinner. He hates his thrush medicine! Last night he also needed lots of suctioning. It sounds like his lungs are full of fluid. My worst fear may be coming true. That Alex is suffocating! If he has to go, please Dear Lord, don't let him suffer!!! This morning he is on O2, on the couch and resting. His eyes have not opened in the past hour and he no longer has control over his head, legs and his left grip is very weak. It is very difficult to understand him because it sounds like fluid is stuck in his throat. It just comes out very weak and girgly.

Please forgive me for not calling you if you are on our call list. THis is the most time I care to be away from Alex.

Alex had an absolutely wonderful time at the Make a wish Holiday store! With a great deal of effort, my old boss delivered his Power chair to the hospital and Alex was off!!! He loved going fast and doing spins in his chair. Everyone noticed the beautiful smile on the beautiful boy in the fast chair! It was a spectacular time!! Thank you Jerry!!!! You made this possible!!

Please pray for Alex.

God bless!
G