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
Friday, December 21, 2007
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
"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
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
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
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!
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
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
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
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
Thursday, November 29, 2007
Thursday, November 29th - Update
So we have not had any alarms during the night lately. Alex does seem to need the O2 when he is awake more than ever though. But that is okay! Yesterday Steve came to Alex's OT/PT appointment with us. Alex had a good time kicking blocks and bugs onto his Dad. We took some great video. Alex also has a yeast infection in his penis and thrush in his mouth. We started treatments yesterday and hope that his swallow will be better when the thrush is gone.
Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.
Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!
So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!
I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!
Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!
Love and many thanks for the powerful prayers. Keep it up!
G
Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.
Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!
So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!
I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!
Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!
Love and many thanks for the powerful prayers. Keep it up!
G
Tuesday, November 27, 2007
Tuesday, November 27th - Update
Good Morning! What a beautiful, sun-filled day! Alex had his second "no-alarm" night last night. He is currently battling his cousin on the Wii Spider Man game.
I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.
God bless! love and hugs!
G
I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.
God bless! love and hugs!
G
Monday, November 26, 2007
Monday, November 26th - Update
We went through the night without any alarms on Alex's pulse ox. This means his readings did not go below 80% all night. We think that is probably due to the fact that his Midazolan was increased about an hour before bed time. This morning he seemed pretty out of it and we are sure we have seen a few petit mal seizures (space out-like) today. His pulse ox dropped into the 70's and he was very out of it at 3pm. They say these small seizures will lead up to a big one.His hospice nurse said his blood pressure was pretty good and his lungs sounded okay, but he is definitely slowing down. She would not commit to the 72 hours instead she said "no one knows." Steve and I had to discuss what we would do in the case of coma, etc.
So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.
My sister plans to leave tomorrow morning with her husband and son.
God bless you all for your support and beautiful messages.
Gotta go!
G
So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.
My sister plans to leave tomorrow morning with her husband and son.
God bless you all for your support and beautiful messages.
Gotta go!
G
Sunday, November 25, 2007
Sunday, November 25th - 72 Hour Notice
So Alex had a "seizure" last night that lasted about 20 or 30 minutes. During this time, despite being on his oxygen, his pulse ox dropped to the high 50's and it was with great difficulty that he was able to get it to a reasonable concentration. Steve and I were completely scared but calm at the same time. I have never been so happy to see the sun shine on Alex's face as I was this morning!
Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!
Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.
Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.
If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.
Your prayers are most welcome!
God bless!
G
Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!
Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.
Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.
If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.
Your prayers are most welcome!
God bless!
G
Friday, November 23, 2007
Friday, November 23rd - 24 hour watch
While we were painting pottery today, Alex was holding my hand as I squeezed the writing paint so he could spell out his name on his vase. Very soon after we started the "A" Alex's hand just started going up and down, up and dooooooown, slower and slower. When I glanced at him, his eyes were glazed over and then his head jerked and you could tell he had "spaced out" for a while. Within 10 minutes he had a raging headache and we had to pack up and head home. ON the way, I figured out that Alex had had a seizure. When the hospice nurse arrived she confirmed my fears. Alex must now be under observation 24/7. We have to be aware and available to react if anything else should happen.
Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.
Okay, more later! Think positive, longevity-inspiring thoughts!
Love, G
Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.
Okay, more later! Think positive, longevity-inspiring thoughts!
Love, G
Friday, November 23rd - The day after!!
Wow! What great comments! Thank you for your notes. I absolutely love to hear how our situation helps others stop and take the time to appreciate the gifts in their lives. Alex is such an inspiration to so many people. AS he (and every child) should be!
Thanksgiving brought us a house full of family and friends; much laughter; some great food and the time to just be! Alex had a pretty good day yesterday. He always perks up so much when his cousin(s) are around! We spent so much of the day in the kitchens (had to use the downstair's one too) that once I was able to just sit and snuggle with Alex I felt so blessed. At one point, when Alex was not doing so well, the horrible thought that this may be his last Thanksgiving grabbed hold of me and I began to cry. I was immediately hugged and reminded that he is here now and given a glass of wine. I love my family and friends!
Yesterday we were not able to be around all of our loved ones, some due to distance others due to the passing of life; but via modern telecommunications and fond memories brought about by old recipes being resurrected we felt the love and warmth of so many souls. It was a glorious day!
So today we hope to go paint some pottery. Tomorrow, visit the new Modern Art Museum our neighbor just "gave birth to" (as Steve puts it) then go watch some bedlam football at a local alumni watch party in Lodo. My sister's family will head home on Sunday but I don't want to think about that now.
Okay, I really just wanted to thank those who posted some incredible comments. I hope each of you have a wonderful holiday!
God bless!
G
Thanksgiving brought us a house full of family and friends; much laughter; some great food and the time to just be! Alex had a pretty good day yesterday. He always perks up so much when his cousin(s) are around! We spent so much of the day in the kitchens (had to use the downstair's one too) that once I was able to just sit and snuggle with Alex I felt so blessed. At one point, when Alex was not doing so well, the horrible thought that this may be his last Thanksgiving grabbed hold of me and I began to cry. I was immediately hugged and reminded that he is here now and given a glass of wine. I love my family and friends!
Yesterday we were not able to be around all of our loved ones, some due to distance others due to the passing of life; but via modern telecommunications and fond memories brought about by old recipes being resurrected we felt the love and warmth of so many souls. It was a glorious day!
So today we hope to go paint some pottery. Tomorrow, visit the new Modern Art Museum our neighbor just "gave birth to" (as Steve puts it) then go watch some bedlam football at a local alumni watch party in Lodo. My sister's family will head home on Sunday but I don't want to think about that now.
Okay, I really just wanted to thank those who posted some incredible comments. I hope each of you have a wonderful holiday!
God bless!
G
Monday, November 19, 2007
Monday, November 19th - There he goes!
Hi everyone. Well, things are somewhat the same as the last post but fear is battling with my hope and faith causing some horrible nightmares each night. You see Alex's heart is beating at about 160 beats per minute. A normal five year old's heart beats about 80 or 90 bpm. If Alex were an adult this high heart rate would indicate only a few days left but since his heart is young and strong then all we really know is that his body is not utilizing the oxygen well and his heart is trying to compensate for the deficient. Speculation is that the tumors are causing his lung function issues and could very well be a part of the heart rate issues. We know his paralysis is worse on his right side. His right eye has pretty much stopped being able to follow a moving object and soon we will have to restore the moisture (tears) it is not producing for him. All of this is happening but Alex's smile and incredible spirit still light up our days!
On Sunday, using the ramps Steve and his friend Mark (visiting from Idaho) made on Saturday, Alex was able to leave the house of his own volition in his new power chair! You can't imagine the joy in this little boy's soul. It was absolutely tangible! His power chair came with five skins of different colors and Alex was told to put on the red skins when he wanted to go fast! So after he made it down the ramps he asked for the red skins! Then we headed out into the alley and around the block. There we found our neighbors and Alex's best friend enjoying the absolutely incredible, warm, beautiful day! We all headed out to the park a few blocks away with dogs and Frisbee in tow. Alex had a great time going fast and even asked Esther for a race on the grass! I don't know who one but who really cares! It was so weird for me not to know where Alex was at all times. I just am not used to his new mobility yet. So we played Frisbee, watched dogs run and did some cartwheels. It was a glorious time! Alex's stomach then started bothering him and he wanted some O2; so we headed home. Alex was not even willing to drive the power chair on the trip home. The rest of the afternoon was spent comforting him and doing anything we could to help him feel better. Alex had to take a bath after his nap at which time we noticed his Broviac line (which he vehemently wants out of his heart) had been pulled out of his body a few centimeters. Luckily, Alex's hospice nurse said it is still okay but I must say all of my nightmares last night revolved around this situation.
So, we are just a few days away from Thanksgiving. I have so much to be thankful for and so much gratitude for it all. I just wish this nagging little voice in my head would stop saying, "this is Alex's last Thanksgiving, will he make it to Christmas?" I've tried to ignore this voice but it is relentless! Then I realize that all I really have is this moment and it really helps me get to the next moment. So here we are again, just striving and thriving from moment to moment.
Okay, I'm exhausted writing all of this inner turmoil stuff. I really just want to focus on the holiday and the fact that my sister's family will be here very soon. I hope each and every one of you know how grateful we are to know you are out there; praying and hoping and crying with us. We love you and wish you a wonderful holiday filled with family, friends, laughter and joy!
God bless!
G
Wednesday, November 14, 2007
Wednesday, November 14th - Ups and Downs
Good evening everyone. So I know when I have neglected you all when my friends call and start asking about Alex. I love to talk to my friends and so I reluctantly post this update. (that's a funny!) While we are on the topic of friends, I want to say that I have noticed a universal reluctance of close friends to discussing any events, thoughts, or life issues that are on the negative side. I just want to say, "CUT IT OUT!!" I am your friend in good times and bad and I don't want to be treated with kid gloves because Alex has brain cancer. It is not fair that I don't get to be your real friend anymore. Do you really think I want to hear how great things are with you? NO!!! I want to hear your shit and your irks and your frustrations! Please! Let me be a real friend. Don't take that away from me! Is that how I am supposed to treat you when life gets rough for you? Is it all about me? No! Let me be there. I really hope this message is received well. There is no one person that this is directed at. I think the natural tendency of kind people is to be kind and gentle but enough is enough! I'm completely bored, let's spice this up a little!!
Okay, done.
So Alex received his new "power chair" on Monday. He seems to really enjoy "having legs again". You should have seen how excited Zoe was to have her brother ambulatory again. She was absolutely giddy! When Alex went to bed Monday night he said, "this has been a great day!" He even asked if we could take Roxie for a walk on Tuesday. That did not happen, but it is on the agenda.
Alex seems to be "changing". His voice is softer and his drool is much worse. Today his feet and legs were quite cold up to his mid calf as well as his hands. He seems to be dehydrated for the first time since hospice care began but I must say this morning he was incredible! Alex had "evil OT/PT" this morning. He has been referring to it as "evil" because he gets to do bad things like throw leather bugs at his mom and Noni. He gets to kick large blocks and cylinders on us as well. This morning we had an upside down, backwards and opposite day! It was tons of fun driving to his appointment and pointing out the submarines, noodles and whales! Alex decided to stand on the platform swing today and knock blocks onto my back! This morning was really great. That is just how it goes around here. Up then down, then down then up! Flexibility and stamina are key!
So I am having a hard time believing next week is Thanksgiving. Were has the time gone. Did you know that today begins the 9th week of hospice care? These docs don't know anything!! Nonetheless, we have decided not to move forward on the MRI. The benefits just don't out way the risks!
Okay, dinner time and I need to get. Thank you all for your support! WE love you all!
God bless!
G
Okay, done.
So Alex received his new "power chair" on Monday. He seems to really enjoy "having legs again". You should have seen how excited Zoe was to have her brother ambulatory again. She was absolutely giddy! When Alex went to bed Monday night he said, "this has been a great day!" He even asked if we could take Roxie for a walk on Tuesday. That did not happen, but it is on the agenda.
Alex seems to be "changing". His voice is softer and his drool is much worse. Today his feet and legs were quite cold up to his mid calf as well as his hands. He seems to be dehydrated for the first time since hospice care began but I must say this morning he was incredible! Alex had "evil OT/PT" this morning. He has been referring to it as "evil" because he gets to do bad things like throw leather bugs at his mom and Noni. He gets to kick large blocks and cylinders on us as well. This morning we had an upside down, backwards and opposite day! It was tons of fun driving to his appointment and pointing out the submarines, noodles and whales! Alex decided to stand on the platform swing today and knock blocks onto my back! This morning was really great. That is just how it goes around here. Up then down, then down then up! Flexibility and stamina are key!
So I am having a hard time believing next week is Thanksgiving. Were has the time gone. Did you know that today begins the 9th week of hospice care? These docs don't know anything!! Nonetheless, we have decided not to move forward on the MRI. The benefits just don't out way the risks!
Okay, dinner time and I need to get. Thank you all for your support! WE love you all!
God bless!
G
Thursday, November 08, 2007
Thursday, November 8th - Sad day
Good Morning. Yesterday was a very sad day in our home. Alex is doing well, but Steve's employer shut down the 25 million dollar project he has been working on for about a year and a half. Several of Steve's friends and colleagues have been laid off. Steve was one of the lucky ones who had his position redeployed. While we are relieved to have our family's income still coming in; we are very distraught for the others that were not so fortunate. Steve and I have been through a few bouts of unemployment and it is never an easy feat to overcome. My prayer today is that everyone that was laid off yesterday find their new place in the world in a timely manner and with as little hardship as possible. Please know that our thoughts are with you.
So Alex is having a very hard time lately with his swallow and nausea. It's so hard to watch him struggle to eat and drink and even harder to watch his nausea. When Alex is sick he needs to be suctioned and he struggles to breathe. It 's probably the worst part of our days. Of course it could be worse and we know that. Generally, Alex is in fine spirits and is enjoying his days. That is the most important aspect of all of this.
Yesterday, Linda and I did some Christmas shopping. It was very hard for me. No one knows what the future holds but my anxiety about planning for anything is very high at this point. The Starlight Foundation called yesterday and wants Alex to join them and United Airlines for a Fantasy Sleigh ride to the North Pole on December 8th. They require that the child be able to be away from his/her parents during the whole event which Alex can not be for obvious reasons. So the coordinator is going to try to get me on the sleigh ride so Alex can go. When I told Linda about the event she said, "well we just have to make it one month!" There is alot wrong with that statement and it really struck me that we can not take even one month, one day or one moment for granted. I thought I knew this but it is astounding how poignant the realization can be sometimes.
So make it a great morning, afternoon, dinner and bedtime today! Thank you all for caring about our family.
God bless!
G
So Alex is having a very hard time lately with his swallow and nausea. It's so hard to watch him struggle to eat and drink and even harder to watch his nausea. When Alex is sick he needs to be suctioned and he struggles to breathe. It 's probably the worst part of our days. Of course it could be worse and we know that. Generally, Alex is in fine spirits and is enjoying his days. That is the most important aspect of all of this.
Yesterday, Linda and I did some Christmas shopping. It was very hard for me. No one knows what the future holds but my anxiety about planning for anything is very high at this point. The Starlight Foundation called yesterday and wants Alex to join them and United Airlines for a Fantasy Sleigh ride to the North Pole on December 8th. They require that the child be able to be away from his/her parents during the whole event which Alex can not be for obvious reasons. So the coordinator is going to try to get me on the sleigh ride so Alex can go. When I told Linda about the event she said, "well we just have to make it one month!" There is alot wrong with that statement and it really struck me that we can not take even one month, one day or one moment for granted. I thought I knew this but it is astounding how poignant the realization can be sometimes.
So make it a great morning, afternoon, dinner and bedtime today! Thank you all for caring about our family.
God bless!
G
Thursday, November 01, 2007
Thursday, November 1st - Best Mom Ever!
I hope everyone had a great Halloween. Alex took his cousin and sister trick or treating at the new hospital and got lots of candy. You should have seen ZG! She really picked up on the concept and just loved grabbing candy and putting it into her basket. At home, she would run to the door at every knock yelling "Twick or tweet, I do it, I do it myself!" Then proceeded to give out large handfuls of candy to each child. It was a fun day.
Alex had OT/PT yesterday morning and really ended up having a great time. Initially, he was upset because he did not get to sleep in but when it came time to throw the balls at my sister and me; he really perked up. We got Alex back on the Prevacid for his upset tummy. Hopefully this will help relieve his nausea or acid reflux. Last night Alex asked me for his super boot (brace). He said he wanted to stretch his legs and run around; so I got his shoes and boot on him and he stood up with his transformer and tried a couple of steps. He did not go far or stand for long but this is HUGE!!! Alex refused to walk yesterday at OT/PT and has not even looked at his transformer (walker) in over eight weeks if not more! Alex was upset when Evan left yesterday to go trick or treating with his other cousins. Alex has expressed several times that he just wants to run and play like other kids. So I think he thought about it for a while after Evan left and then decided to give a try. Steve and I were so amazed. Alex's strength, courage and perseverance is remarkable! I told Alex that we would resume his leg and arm exercises and keep working with the transformer for as long as he wants.
So, Steve and I went out Tuesday night for sushi. We really needed to reconnect as a couple and it was a very enlightening evening. One thing I learned was that Steve has been worrying about Alex's Pooh Bear for a year now. He expressed this to me and after some thought we decided to let Alex tell us what he wants. So when we got home and I put him to bed I told Alex a story about a little girl who was going on a trip but her brother would not be travelling with her. This little girl has a favorite doll and she is unable to decide whether to leave it with her brother or take it on the trip with her. I asked Alex what he thought she would do. He replied, "take it with her because boys don't play with dolls." Which makes way too much sense, so I went to story numero dos. So then the little girl was going on a trip and had a favorite tshirt. Alex asked if it had a flower on it and I said "no, it has a circle on it." So she has to decide whether to take it or leave the tshirt with her brother. Alex said "she takes it, but makes him a shirt just like it." So there you go. Out of the mind of Alex! Isn't that beautiful? I adore this kid!
Finally, I want to document something that happened earlier this week. First of all you have to understand that sleep schedules are completely off around here. So due to a long late afternoon nap, Zoe and I were up late watching a movie. It was 12:45am and I decided that we needed to go to bed. On the way though, I wanted a bite of Alex's chocolate bday cake. (This was a very yummy cake that spoke to me!) So as I was taking my little bite with ZG on my hip, she said "I want sum." So I begrudgingly shared my bite. Then I thought, well if she took some of that bite then I need another bite. Before you knew it she and I had eaten a whole piece of cake! I am the BEST MOM EVER!!!! I know I am not, but it was a fun moment in our lives and I just wanted to document it. Zoe and I went straight to sleep, in case you were wondering!
Okay, so no decision has been made on the MRI. Alex wants to have another picture of his big brain so he can see if the bump is gone!! I am even more fearful and really don't want to "be devastated again (as Steve put it)" so I just don't know. I am leaning toward not doing it right now but that could change. I still need to get information to make an informed decision with Steve.
Hope your day is a great one!
Love and hugs!
God Bless!
G
Alex had OT/PT yesterday morning and really ended up having a great time. Initially, he was upset because he did not get to sleep in but when it came time to throw the balls at my sister and me; he really perked up. We got Alex back on the Prevacid for his upset tummy. Hopefully this will help relieve his nausea or acid reflux. Last night Alex asked me for his super boot (brace). He said he wanted to stretch his legs and run around; so I got his shoes and boot on him and he stood up with his transformer and tried a couple of steps. He did not go far or stand for long but this is HUGE!!! Alex refused to walk yesterday at OT/PT and has not even looked at his transformer (walker) in over eight weeks if not more! Alex was upset when Evan left yesterday to go trick or treating with his other cousins. Alex has expressed several times that he just wants to run and play like other kids. So I think he thought about it for a while after Evan left and then decided to give a try. Steve and I were so amazed. Alex's strength, courage and perseverance is remarkable! I told Alex that we would resume his leg and arm exercises and keep working with the transformer for as long as he wants.
So, Steve and I went out Tuesday night for sushi. We really needed to reconnect as a couple and it was a very enlightening evening. One thing I learned was that Steve has been worrying about Alex's Pooh Bear for a year now. He expressed this to me and after some thought we decided to let Alex tell us what he wants. So when we got home and I put him to bed I told Alex a story about a little girl who was going on a trip but her brother would not be travelling with her. This little girl has a favorite doll and she is unable to decide whether to leave it with her brother or take it on the trip with her. I asked Alex what he thought she would do. He replied, "take it with her because boys don't play with dolls." Which makes way too much sense, so I went to story numero dos. So then the little girl was going on a trip and had a favorite tshirt. Alex asked if it had a flower on it and I said "no, it has a circle on it." So she has to decide whether to take it or leave the tshirt with her brother. Alex said "she takes it, but makes him a shirt just like it." So there you go. Out of the mind of Alex! Isn't that beautiful? I adore this kid!
Finally, I want to document something that happened earlier this week. First of all you have to understand that sleep schedules are completely off around here. So due to a long late afternoon nap, Zoe and I were up late watching a movie. It was 12:45am and I decided that we needed to go to bed. On the way though, I wanted a bite of Alex's chocolate bday cake. (This was a very yummy cake that spoke to me!) So as I was taking my little bite with ZG on my hip, she said "I want sum." So I begrudgingly shared my bite. Then I thought, well if she took some of that bite then I need another bite. Before you knew it she and I had eaten a whole piece of cake! I am the BEST MOM EVER!!!! I know I am not, but it was a fun moment in our lives and I just wanted to document it. Zoe and I went straight to sleep, in case you were wondering!
Okay, so no decision has been made on the MRI. Alex wants to have another picture of his big brain so he can see if the bump is gone!! I am even more fearful and really don't want to "be devastated again (as Steve put it)" so I just don't know. I am leaning toward not doing it right now but that could change. I still need to get information to make an informed decision with Steve.
Hope your day is a great one!
Love and hugs!
God Bless!
G
Tuesday, October 30, 2007
Tuesday, October 30th - Back to ER
Hi there, first of all Alex is fine but his broviac line just split open during last night's flush and after waiting for an hour to hear from hospice that it would be another hour before anyone could get to him, we headed for the ER. Three hours later Alex left with an IV in his right arm. As scared as he was about getting a poke he never flinched or cried at all while getting the IV. He truly is an amazing child.
So today we headed back to the hospital at 8a to have his line repaired. Three hours later we leave with Alex's third line and flu shots for my sister and me. Alex appears to being doing as well if not better than the last time he was seen by the clinic staff. We are currently gathering information on the risks/benefits of having another MRI done. Steve and I need to make some big decisions and more information would be useful. So I'll let you know when we know our decision.
Yesterday my sister and mother-in-law went to visit the funeral home we have selected. It is a beautiful place right between Alex's two favorite parks. It is very close to home and I like that alot. Anyway, I could not muster the strength to go and actually enter the place so they bravely did it for me (us). When Stephanie left she told the funeral director, " I hope I never see you again." To which he "dittoed" the sentiment! I also had Stephanie and Linda pick up some black cloth to cover our mirrors if Alex should pass. I like this ritual alot and may even take up some more if the situation actually arises.
So I just wanted to fill you in. Love and hugs!
God bless.
G
So today we headed back to the hospital at 8a to have his line repaired. Three hours later we leave with Alex's third line and flu shots for my sister and me. Alex appears to being doing as well if not better than the last time he was seen by the clinic staff. We are currently gathering information on the risks/benefits of having another MRI done. Steve and I need to make some big decisions and more information would be useful. So I'll let you know when we know our decision.
Yesterday my sister and mother-in-law went to visit the funeral home we have selected. It is a beautiful place right between Alex's two favorite parks. It is very close to home and I like that alot. Anyway, I could not muster the strength to go and actually enter the place so they bravely did it for me (us). When Stephanie left she told the funeral director, " I hope I never see you again." To which he "dittoed" the sentiment! I also had Stephanie and Linda pick up some black cloth to cover our mirrors if Alex should pass. I like this ritual alot and may even take up some more if the situation actually arises.
So I just wanted to fill you in. Love and hugs!
God bless.
G
Monday, October 29, 2007
Monday, October 29th - Happy Day!
Good Morning! So Alex had a wonderful birthday MONTH thanks to all of you and yesterday was especially nice. At 5a, during a body shift in the big bed, I wished Alex a "Happy Birthday!" He said with awe in his voice, "today is my birthday?" To which I replied, "yes" and he fell asleep with a smile on his face. I got up at 7a to purchase party stuff and donuts! I never thought I would be happy about having a 24 hour Walmart nearby, but it came in handy yesterday. On my way there with the sun rising in a beautiful sky, I felt pure joy. I was so worried that Alex would not be with us on his birthday, but he is and that makes my heart sing. I just need to keep that feeling every day!
sunglasses, When I got home, Alex was awake and ready to open gifts. Yesterday he received SpidermanWII game and t-shirt; Lightning McQueen collector set and racetrack; Transformers t-shirt and movie; a case of silly string; a pirate's chest and a Shining Star Bear that allows Alex to name his own star! That is so cool to me!
All of Alex's friends that could make it with less than 24 hours notice, joined us at Go Paint! for a pottery painting party. Alex had a blast and it looked like so did everyone else. Unfortunately, after the two cupcakes worth of frosting, Alex was quite nauseous. We upped his meds and he did better later in the day.
This weekend was also full of some fun activities with dear friends. I'm ready for a day off!
One last thing, the other day, Alex said he wanted to wake up early to watch the sun rise because "that is the best part of the day." I thought that was so awesome.
Okay, have a wonderful day! I know I will!
Love and God Bless!
G
sunglasses, When I got home, Alex was awake and ready to open gifts. Yesterday he received SpidermanWII game and t-shirt; Lightning McQueen collector set and racetrack; Transformers t-shirt and movie; a case of silly string; a pirate's chest and a Shining Star Bear that allows Alex to name his own star! That is so cool to me!
All of Alex's friends that could make it with less than 24 hours notice, joined us at Go Paint! for a pottery painting party. Alex had a blast and it looked like so did everyone else. Unfortunately, after the two cupcakes worth of frosting, Alex was quite nauseous. We upped his meds and he did better later in the day.
This weekend was also full of some fun activities with dear friends. I'm ready for a day off!
One last thing, the other day, Alex said he wanted to wake up early to watch the sun rise because "that is the best part of the day." I thought that was so awesome.
Okay, have a wonderful day! I know I will!
Love and God Bless!
G
Thursday, October 25, 2007
Thursday, October 25th - Most Important Things
Hi Everyone, well yesterday was a very good day for Alex. The two days prior were not so good. Alex was very tired, took alot of oxygen and yet still had low energy. We think this was due to the increase in Medazolam over the weekend. Nonetheless, yesterday was a different story. The birthday party at Alex's favorite breakfast restaurant probably helped boost his spirits. On Tuesday, we made arrangements with the restaurant's owner and the evite went out. Alex had a five pancake cake with whipped cream frosting to celebrate the event. All of the kids were in costumes and Steve and I were dressed up also. I was Lady Guenevere and Steve was Lord of the Torridors (or something like that).
Alex got this incredible talking faux parrot that is still amazing us! And today he opened his Pirate kit and turned into a real pirate. Later today we hope to make it out to Build-A-Bear and use the gift card he also received yesterday. I can't say enough thanks to everyone that came on such short notice. Your support made it a very special party.
So Sunday is Alex's real birthday. He wants the house decorated again and since some dear friends are in town from Seattle and Santa Cruz; we are going to keep this party low key. Wish us luck!
So last night as Alex was fading into sleep he said the following:
"Having fun with friends; sleeping with you and Zoe and Grace (I'm pretty sure he meant dad) that is what is MOST important. Oh and watching my shows in the morning."
I just thought that was too sweet.
Okay, day going on, gotta go.
Love and God bless!
G
Alex got this incredible talking faux parrot that is still amazing us! And today he opened his Pirate kit and turned into a real pirate. Later today we hope to make it out to Build-A-Bear and use the gift card he also received yesterday. I can't say enough thanks to everyone that came on such short notice. Your support made it a very special party.
So Sunday is Alex's real birthday. He wants the house decorated again and since some dear friends are in town from Seattle and Santa Cruz; we are going to keep this party low key. Wish us luck!
So last night as Alex was fading into sleep he said the following:
"Having fun with friends; sleeping with you and Zoe and Grace (I'm pretty sure he meant dad) that is what is MOST important. Oh and watching my shows in the morning."
I just thought that was too sweet.
Okay, day going on, gotta go.
Love and God bless!
G
Monday, October 22, 2007
Monday, October 22nd - Six days and NOT counting
Good Morning. Well it was quite a roller coaster weekend for everyone here. On Thursday night, Steve had a conversation with Alex about journeys. He told him how some journeys can be scary but when Steve goes on a journey he always has his family with him. He then told Alex, "You won't have to fight the bump forever." To which Alex responded, "I know". Can you say "Wow"?!?! What a mind blower that is, huh?
Okay so let's go to Friday night. Here's the bedtime dialogue as best as I can remember:
A - "Mom, I'm scared to go to sleep."
G - "Why baby?"
A-"Because, I'm afraid that bad dream will come back."
G-"Well you know bad dreams rarely come back. Can you tell me about your bad dream?"
A-long hesitation
A-"Well, I was in the hospital and there was a can with a string. I pulled the string and out came a bunch of cigarettes and I was really scared."
G- pause "Oh baby, I'm sorry you were scared, but I'm confused. What about cigarettes coming out of a can scared you?"
A-"There was a button and I pushed it and I was dead."
G-(no idea what I said, but I tried to comfort him)
G-"Alex, what did it mean to be dead?"
A- long hesitation
A-"I was in the ER and I got pokes and shots and I was really scared."
G-"you mean just like the last time you went to the ER?" (Last ER visit was after he stopped breathing after the morphine and had to be revived by paramedics and then we went to the ER in an ambulance. He was put on an IV and stayed for several days, which was last hospital visit."
A-"yes".
G-"Well, Alex your dad and I are working very hard so that you never have to go to the ER again and never have to have any more pokes or shots. That is why we have a team helping you fight the bump."
(This was followed by some more comforting words, songs etc.)
The bedtime continued to be restless but I was in excruciating pain from my shoulder and completely fatigued by this time, so Steve stayed with Alex and ZG and I slept in the nursery (the master and nursery doors are inches from each other). I awoke at 1:30 to the sound of the suction machine and Alex gagging. I came in and looked at Steve and knew that he had not slept and that the night so far was very difficult for him and Alex. We finished with the suction and Alex told us his tummy hurt, so we gave him a Tylenol suppository for the pain. He laid back down and Steve got up and whispered in my ear "Watch over him" then left the room.
I watched Alex toss and turn with pain and anxiety until 2:30am. I then got up and told Alex I would be right back. I found Steve on the couch and told him that Alex was not sleeping and we needed to call the nurse. She picked up immediately and since Alex was having so much trouble with his secretions, told us to give him more Robinul and that she would call back in 45 minutes. So we did that and as I was returning the meds to the kitchen, Steve and Alex started making shadow animals on the bedroom ceiling. Pretty soon, Alex was a bunny going "boing, boing, boing" all over the ceiling and Steve's hand was a monster which was always defeated by the boingy bunny. We were laughing so much. I then had a moment of genius and went to get the 10 inch Spiderman action figure Alex had received that afternoon from Leo F. (a son of one of Steve's friends, that Alex has never met). Anyway, Spiderman was soon battling Alex's prayer bunny (stuffed animal that says the "now I lay me down to sleep" prayer) and the fun and laughter just kept coming. At about 3:30 am or so Alex finally said, "Okay, I think I have had enough." So we rapped up the shadow party; promised to do it again the next night and we all went to sleep. It was quite the night.
Saturday was a gorgeous day here and Alex spent time in his Sky chair with his dad and I made chili. We had some dear friends over and played some more Wii. Then Sunday morning came and Steve told me that "he was never so happy to see Alex awake as he was that morning." Alex had slept in and also took a long nap Sunday afternoon. Sunday was the first day that I would say was a "bad day" for Alex. Even though he had a friend over, he just was slow and seemed to have more difficulty breathing. He wore his oxygen quite a bit yesterday too.
So last night went okay. There was suctioning at 4am, but that has become the norm now. Alex has been making jokes and seems in better spirits today. It may be due to the fact that my sister and her family on driving up today and will arrive this evening. Alex has already asked if he can stay up to see his cousin!
Alex has not eaten much (if any) in the last few days. He has peed though! Praise the pee! And the nurses say he is not dehydrated. His Spider milk now has glycolax and yogurt added to it. I think some of his tummy pain is partially due to constipation and some to coughing soreness.
So today begins another day. Make it a great one! Tell everyone you love how you feel and give some one special a big fat kiss!
Love and God bless!
G
Okay so let's go to Friday night. Here's the bedtime dialogue as best as I can remember:
A - "Mom, I'm scared to go to sleep."
G - "Why baby?"
A-"Because, I'm afraid that bad dream will come back."
G-"Well you know bad dreams rarely come back. Can you tell me about your bad dream?"
A-long hesitation
A-"Well, I was in the hospital and there was a can with a string. I pulled the string and out came a bunch of cigarettes and I was really scared."
G- pause "Oh baby, I'm sorry you were scared, but I'm confused. What about cigarettes coming out of a can scared you?"
A-"There was a button and I pushed it and I was dead."
G-(no idea what I said, but I tried to comfort him)
G-"Alex, what did it mean to be dead?"
A- long hesitation
A-"I was in the ER and I got pokes and shots and I was really scared."
G-"you mean just like the last time you went to the ER?" (Last ER visit was after he stopped breathing after the morphine and had to be revived by paramedics and then we went to the ER in an ambulance. He was put on an IV and stayed for several days, which was last hospital visit."
A-"yes".
G-"Well, Alex your dad and I are working very hard so that you never have to go to the ER again and never have to have any more pokes or shots. That is why we have a team helping you fight the bump."
(This was followed by some more comforting words, songs etc.)
The bedtime continued to be restless but I was in excruciating pain from my shoulder and completely fatigued by this time, so Steve stayed with Alex and ZG and I slept in the nursery (the master and nursery doors are inches from each other). I awoke at 1:30 to the sound of the suction machine and Alex gagging. I came in and looked at Steve and knew that he had not slept and that the night so far was very difficult for him and Alex. We finished with the suction and Alex told us his tummy hurt, so we gave him a Tylenol suppository for the pain. He laid back down and Steve got up and whispered in my ear "Watch over him" then left the room.
I watched Alex toss and turn with pain and anxiety until 2:30am. I then got up and told Alex I would be right back. I found Steve on the couch and told him that Alex was not sleeping and we needed to call the nurse. She picked up immediately and since Alex was having so much trouble with his secretions, told us to give him more Robinul and that she would call back in 45 minutes. So we did that and as I was returning the meds to the kitchen, Steve and Alex started making shadow animals on the bedroom ceiling. Pretty soon, Alex was a bunny going "boing, boing, boing" all over the ceiling and Steve's hand was a monster which was always defeated by the boingy bunny. We were laughing so much. I then had a moment of genius and went to get the 10 inch Spiderman action figure Alex had received that afternoon from Leo F. (a son of one of Steve's friends, that Alex has never met). Anyway, Spiderman was soon battling Alex's prayer bunny (stuffed animal that says the "now I lay me down to sleep" prayer) and the fun and laughter just kept coming. At about 3:30 am or so Alex finally said, "Okay, I think I have had enough." So we rapped up the shadow party; promised to do it again the next night and we all went to sleep. It was quite the night.
Saturday was a gorgeous day here and Alex spent time in his Sky chair with his dad and I made chili. We had some dear friends over and played some more Wii. Then Sunday morning came and Steve told me that "he was never so happy to see Alex awake as he was that morning." Alex had slept in and also took a long nap Sunday afternoon. Sunday was the first day that I would say was a "bad day" for Alex. Even though he had a friend over, he just was slow and seemed to have more difficulty breathing. He wore his oxygen quite a bit yesterday too.
So last night went okay. There was suctioning at 4am, but that has become the norm now. Alex has been making jokes and seems in better spirits today. It may be due to the fact that my sister and her family on driving up today and will arrive this evening. Alex has already asked if he can stay up to see his cousin!
Alex has not eaten much (if any) in the last few days. He has peed though! Praise the pee! And the nurses say he is not dehydrated. His Spider milk now has glycolax and yogurt added to it. I think some of his tummy pain is partially due to constipation and some to coughing soreness.
So today begins another day. Make it a great one! Tell everyone you love how you feel and give some one special a big fat kiss!
Love and God bless!
G
Friday, October 19, 2007
Friday, October 19th - Odds and Ends
Good morning. So I want to tell you all some things that I keep forgetting. First of all though, Alex is having very good days and very undesirable nights. He has neither, eaten, pooped or peed in several days. I'm concerned about his hydration level too. But through all of that Alex still finds pleasure in his days. You should see him "change position" on the Sonic Wii Treasure Hunt game. The character does this kinda cool "beam me up" graphic which when Alex saw it for the first time made his chin drop and say "Wow, Mom did you see that? That was so coooool!!" And from that point on in the game, he forgot about winning treasures and just wanted to repeat that cool effect. Yesterday, we had an impromptu lunch at Snooze with some of Alex's favorite people! Which was followed by a play date here while Steve and I met with the hospice chaplain. I have no idea how we had the conversation we had with her about "arrangements". I just know that life is pretty surreal at times these days and somehow that helps you get through stuff you never imagined in your whole life doing.
Anyway, after taking a long drive with Nonni and dad (read as Alex's favorite napping place); Alex came home and even more friends started showing up. Pretty soon we were having a dinner party and the house was full of laughter, good Thai and lots of wine. Alex entertained the masses with his new "Incredibles" game! It was a very special night.
So back to the odds and ends. I have realized that I have not written about Zoe Grace in a very long time (I think). So I want to tell everyone that she is doing quite well. She has not been to school much in the past month or so, and she really does not seem to mind. She loves to watch Alex's Teenage Mutant Ninja Turtles DVD and if we did not entertain her in some other way probably would watch it 24/7!! She also feels and knows the energy of the house. You may wonder how I know this and let me tell you. As you may have read, Tuesday was a VERY hard day for me. I woke up crying and could not really control my tears much that day at all. Anyway at one point, I was in the kitchen (not crying) trying to figure out what to eat for breakfast and Zoe came running from the play room (directly across from kitchen) and jumped into my arms. For the next few minutes, we just stood there holding each other. She had her arms tight around my neck and her legs even tighter around my waist. That same thing happened later in the day and I must say at a perfect moment. I love this little girl and when I think of the tragedy that is predicted my heart aches and my tears come immediately.
Which leads me to my next point about "Why?" I have concluded that there is no "why". There is not one possible reason any of this should be happening. And if someone were to come to me and give me a reason it would be so inadequate as to explain why Alex's bright, shining beacon of intelligence, beauty and pure joy has to be extinguished. It could never help me understand the reason Zoe may never remember her brother. Nor why any mother is asked to survive without her first born. There is no WHY!! And somehow that knowledge gives me peace. At least I don't dwell on "Why?" anymore (okay sometimes, but not as much).
Another revelation I had just minutes ago and the reason I got out of bed to write to you concerns mortality. First some history. My paternal grandmother, who was an angel on earth, passed of breast cancer at 55. She never smoked nor drank a day in her life. My dad, who never went a day without smoking or drinking, passed at 55 from brain, lung and liver cancer (and that is just as far as they looked). So I have had it in my head since 1998, that I may not make it past 55 and that the day I turn 56 would be a wondrous day. Lately, my "clock has been ticking" and the thought of having a baby has risen. Steve said to me last night, "I don't want another baby, it is too late in the game and I don't want to raise a Down's baby. But that does not mean I don't want to raise another child." Then we went on to talk about adoption and timing so ZG would not get confused, etc. Anyway, in the wee hours of this morning, I started calculating how old a child would be if I were to get pregnant when I turned 55. Then I realized, how ridiculous this thought was because of Alex and his prognosis. Here I have been thinking that I was good til Alex was 18 or so. When in reality, I only have today. Just today. And so do you. You only have today with the ones you love and if you don't realize that every second of every day then you are living a lie! Don't count on any years to do anything. Why would you if you have read this blog for a while?
Okay, I'm off my soapbox. Today is a very busy day. We will be going to pick up the pottery Alex painted last Saturday with his cousin, Addison. And will have a mini painting party with the same friends from yesterday. That is after the oxygen guy comes this morning as well as two nurses visits and I am having lunch downtown after that, then painting. If you want to join us, we are thinking 2:30 at the mills. Just show up! Love to see you!
Finally, I just want to say thanks for all of the support. Your comments lately have made a world of difference and I am most appreciative!! A dear friend told me the other day that it takes him several hours to recover each time he reads the blog. I know this feeling since it is exactly what I went through reading the Steadman's blog. But just so you all know, you don't have to read this stuff! I don't know that I would if it took several hours to regain my composure and ability to function. Anyway, I do appreciate your comments.
Love and God Bless.
G
PS-Melinda, thank you for the comment. I would love to talk to you but don't want to interrupt your day. Perhaps you could email fightthebump@comcast.net and we could set up a time that works for both of us?
Wednesday, October 17, 2007
Wednesday, October 17th - ?
So my eyes popped open this morning at 4am. I have no idea why, but when I looked over at Alex I could not tell that he was breathing. When I finally did see his body move with breath, it only seemed he was inhaling. I can't express the terror of that moment. I kept watching and feeling and finally hooked up the pulse ox machine to check out his stats. His blood ox was at 100 (nurse explained this is not so good, since it indicates he is not releasing carbon dioxide) and his heart rate was up more than normal for sleep (this too is bad, since the heart will work extra hard to compensate for the poor breathing). I tried to get him to wake up so I could adjust his position (for his airways) and he did not respond until I finally just moved his body. (Another bad sign). So I went in and got Steve and we just stayed with Alex for a long time. I finally had to leave the bed and ended up on the sofa with single tears running down my cheek.
Steve came and joined me for a while and we talked about how horrific this is and this is must be what they meant by "it will be very hard towards the end." Yesterday was very hard on me and last night did not ease any of my discomfort. This morning Alex decided he wanted to get up and go to PT (to see Kerry) and so we headed off. He had a great time with Kerry and I videotaped the whole thing. He loved kicking her down and then swinging and kicking large bolsters over on me! There were even bugs on top of the cylinders just to add to his pleasure. He took a few steps and then we headed home.
After that, I went to my hair appointment and have a surprise for you all!! I'll post pics soon! Anyway, while I was gone, Alex had a wonderful visit with some of our friends who kindly brought us yummy Indian food. Everyone but Linda was resting when I got home. Steve and Alex spent a lot of time on the Wii this evening playing some fun games. Alex is now sleeping and Steve and I plan to both be in bed with him tonight.
For the last two evenings, Alex has told Steve "Daddy, if you have any bad dreams just squeeze my hand." This with the question Monday at Mac Grill tells me Alex is quite aware of his changing body. Steve and I have discussed whether or not we should tell him that we know his body is changing and that he will not have to fight much longer. That we love him and our warmth and love will always be with him and his with us. I want to tell him he is the bravest boy I have ever known (wouldn't be the first time) and that being his mom is my greatest, most fulfilling accomplishment of my life (Zoe is too, for the record). As I type this I just finished a phone call with Alex's play therapist. She concurs with our thoughts. I'm sure much more thought will be given to this in the very near future.
I'm going to bed now. Pray for our beautiful, strong, courageous boy.
Love and God bless
G
Steve came and joined me for a while and we talked about how horrific this is and this is must be what they meant by "it will be very hard towards the end." Yesterday was very hard on me and last night did not ease any of my discomfort. This morning Alex decided he wanted to get up and go to PT (to see Kerry) and so we headed off. He had a great time with Kerry and I videotaped the whole thing. He loved kicking her down and then swinging and kicking large bolsters over on me! There were even bugs on top of the cylinders just to add to his pleasure. He took a few steps and then we headed home.
After that, I went to my hair appointment and have a surprise for you all!! I'll post pics soon! Anyway, while I was gone, Alex had a wonderful visit with some of our friends who kindly brought us yummy Indian food. Everyone but Linda was resting when I got home. Steve and Alex spent a lot of time on the Wii this evening playing some fun games. Alex is now sleeping and Steve and I plan to both be in bed with him tonight.
For the last two evenings, Alex has told Steve "Daddy, if you have any bad dreams just squeeze my hand." This with the question Monday at Mac Grill tells me Alex is quite aware of his changing body. Steve and I have discussed whether or not we should tell him that we know his body is changing and that he will not have to fight much longer. That we love him and our warmth and love will always be with him and his with us. I want to tell him he is the bravest boy I have ever known (wouldn't be the first time) and that being his mom is my greatest, most fulfilling accomplishment of my life (Zoe is too, for the record). As I type this I just finished a phone call with Alex's play therapist. She concurs with our thoughts. I'm sure much more thought will be given to this in the very near future.
I'm going to bed now. Pray for our beautiful, strong, courageous boy.
Love and God bless
G
Tuesday, October 16, 2007
Tuesday, October 16th - Hard Questions
Good Morning. So yesterday was a very hard day for me. We took the kin to the local aquarium and then out to lunch at Mac Grill. While we were enjoying our lunch, Alex asked me "Mom, how many days until I quit choking?" I responded but the hole in my heart has yet to recover. Somehow this question revealed to me (again) that Alex is very much aware of the changes going on in his body and no matter how hard I try to ignore the facts this is really happening.
I went into a mini depression and I really don't know if I'm out of it yet. Alex really did have a great weekend. He even took three steps on Saturday night, while Steve and I were out on the town. His Nonni said that in all of her time spent with Alex she has never seen him laugh as much as he did on Saturday with his cousins. I think Steve and I should go out on the town more often!!! Anyway, with news and rejuvenation like that I was pretty strong in my hope and faith.
This is really scary and Steve and I have started having discussions no parent should ever have to have. How do you make such decisions when your child is such a bright and shining star in your life and the lives of so many others? I really don't know how to and I REALLY don't WANT to either!!! This sucks on so many levels. Okay, I'm slipping. Must come back!
I'm done here. This spilling of inner thoughts is bringing me down. If anyone knows of a good housekeeper, please let me know. I'm desperate!!
Love and peace to you all.
G
I went into a mini depression and I really don't know if I'm out of it yet. Alex really did have a great weekend. He even took three steps on Saturday night, while Steve and I were out on the town. His Nonni said that in all of her time spent with Alex she has never seen him laugh as much as he did on Saturday with his cousins. I think Steve and I should go out on the town more often!!! Anyway, with news and rejuvenation like that I was pretty strong in my hope and faith.
This is really scary and Steve and I have started having discussions no parent should ever have to have. How do you make such decisions when your child is such a bright and shining star in your life and the lives of so many others? I really don't know how to and I REALLY don't WANT to either!!! This sucks on so many levels. Okay, I'm slipping. Must come back!
I'm done here. This spilling of inner thoughts is bringing me down. If anyone knows of a good housekeeper, please let me know. I'm desperate!!
Love and peace to you all.
G
Songs of Love Resolution Information
I have heard from several of you that Alex's song would not play after download. The song has been re-uploaded by the Songs of Love staff so it should work now. If you have already paid for the song and still want it; just give them a call and they will email it to you (after verifying your transaction). Their number is 800.960.SONG.
I hope this helps!
I hope this helps!
Thursday, October 11, 2007
Thursday, October 11th - Songs of Love
To hear/download the song or ringtone for Alexander's Song of Love go to www.songsoflove.org and click on the Family and Friends Song & Ringtone Download link. Simply type "Kasnoff" in the field and the number Child's last name13489 in the Child's Record Number. They will ask for a small donation, please help us support this organization.
I hope you enjoy the song.
God Bless.
G
I hope you enjoy the song.
God Bless.
G
Wednesday, October 10, 2007
Wednesday, October 10th - Dr. Lee's Visit
So the week started off with Alex having to go to the hospital/clinic to have his broviac line repaired. They had to put an IV in his arm. Alex was such a trooper. He was very upset about getting another "poke" but when it came time to put the needle in he did not cry or even flinch. The catheter broke on the first try too, so he had to endure two pokes. It was an amazing moment of pure bravery and courage.
Alex did not sleep well that night and was really exhausted all day yesterday. He asked to go to bed early last night but according to Steve, did not get a good night's rest then either.
Today we started the day with a return to OT/PT. Alex's therapists have coordinated overlapping appointments so that Alex only has to make one visit to see both of his favorite people. It was so great to see Alex laughing and smiling. He had a great time and so did I just playing with him.
Steve's sister and her family arrived today. We are so happy to have them here with us. Alex is loving having the boys around to play video games with him. We are looking forward to a great visit.
Today I woke with a sense of hope. A dear friend of ours made arrangements for her acupuncturist to come by to see if he could help Alex. He has had prior experience with brain stem tumor patients in the past. Before he examined Alex he told us the criteria that would need to be seen to know whether or not he could help. He talked about a vein in his finger and said if it is visible to this line then there is nothing I will be able to do. During the exam, he showed me that Alex's vein is to that line. The consult ended soon after that but not before Alex bravely accepted his offer of two acupuncture needles to help him feel better. Afterwards he spoke to Steve and me privately. He reconfirmed that unfortunately there was nothing within his power to help Alex. I (stupidly) asked if he could tell how much time Alex might have and he replied, "perhaps two to four week; it is severe".
These words brought such a wave of sadness over me I was barely able to maintain my composure. I absolutely hate this. Again, I must say "IT IS SO UNFAIR"!!!
That's it. Alex wants to go outside and I am going to go with him.
Love and God bless.
G
Alex did not sleep well that night and was really exhausted all day yesterday. He asked to go to bed early last night but according to Steve, did not get a good night's rest then either.
Today we started the day with a return to OT/PT. Alex's therapists have coordinated overlapping appointments so that Alex only has to make one visit to see both of his favorite people. It was so great to see Alex laughing and smiling. He had a great time and so did I just playing with him.
Steve's sister and her family arrived today. We are so happy to have them here with us. Alex is loving having the boys around to play video games with him. We are looking forward to a great visit.
Today I woke with a sense of hope. A dear friend of ours made arrangements for her acupuncturist to come by to see if he could help Alex. He has had prior experience with brain stem tumor patients in the past. Before he examined Alex he told us the criteria that would need to be seen to know whether or not he could help. He talked about a vein in his finger and said if it is visible to this line then there is nothing I will be able to do. During the exam, he showed me that Alex's vein is to that line. The consult ended soon after that but not before Alex bravely accepted his offer of two acupuncture needles to help him feel better. Afterwards he spoke to Steve and me privately. He reconfirmed that unfortunately there was nothing within his power to help Alex. I (stupidly) asked if he could tell how much time Alex might have and he replied, "perhaps two to four week; it is severe".
These words brought such a wave of sadness over me I was barely able to maintain my composure. I absolutely hate this. Again, I must say "IT IS SO UNFAIR"!!!
That's it. Alex wants to go outside and I am going to go with him.
Love and God bless.
G
Saturday, October 06, 2007
Saturday, October 6th - Counting Days
So it is day break and I can't sleep. Alex is doing okay. I wish he would eat more or any really. We raised his Medazolam up Thursday night because he was so scared about choking and would not sleep due to his fears. He now only wants angel hair pasta (with alfredo sauce) because it is easier to eat.
My mom and stepdad are in town until tomorrow and it has been great to have them around. ZG has turned into a momma's girl lately and I absolutely adore it. She is such a sweet child with such a big spirit. You can't help but be infused and lifted by the energy she puts out.
So I woke up Tuesday morning with the thought that it was 13 days since Alex left the hospital with that "six week window" looming over his head. I can't wait to get to 43 days post and tell the doctors Alex is doing well! I want to make each day count but not in that way!!! I am struggling with this so-called countdown. I try very hard to think of it as a "count up" but it is difficult at times.
I want to thank some more folks. Please know that my mind is not right and if your name is not on these lists, it does not mean that I don't love and adore you. Just that I am exhausted and can't remember my own name at times.
Heartfelt gratitude to our dear friends:
Okay, well I think that is all I had to say right now. We plan to revive the Play, Pavers and Prayers event. Just not this weekend. Next time, we will set up individual dates with friends so that everyone can have some one on one time with Alex. It should be much more manageable this way.
See you soon!
God bless!
G
My mom and stepdad are in town until tomorrow and it has been great to have them around. ZG has turned into a momma's girl lately and I absolutely adore it. She is such a sweet child with such a big spirit. You can't help but be infused and lifted by the energy she puts out.
So I woke up Tuesday morning with the thought that it was 13 days since Alex left the hospital with that "six week window" looming over his head. I can't wait to get to 43 days post and tell the doctors Alex is doing well! I want to make each day count but not in that way!!! I am struggling with this so-called countdown. I try very hard to think of it as a "count up" but it is difficult at times.
I want to thank some more folks. Please know that my mind is not right and if your name is not on these lists, it does not mean that I don't love and adore you. Just that I am exhausted and can't remember my own name at times.
Heartfelt gratitude to our dear friends:
- Jerry and Martha
- Susan, Jevin, Emma and Mitchell
- Diane and Josh
- John and Nicholas
- Kerry
- Peggy
- Jenny
- JoAnne
- Dr. Foreman
- Wanda
- Bridget
- Gayle
- Katie
- Linda
- Christina and the boys!
- Barbara and Burnsie
- Ms. Lisa
- Katrina
- Kathleen
- Eric Alexander
- (and to all of you that read this blog and send us your positive thoughts and comments)!
Okay, well I think that is all I had to say right now. We plan to revive the Play, Pavers and Prayers event. Just not this weekend. Next time, we will set up individual dates with friends so that everyone can have some one on one time with Alex. It should be much more manageable this way.
See you soon!
God bless!
G
Instead of "How are you" say . . .
Here are some alternative greetings for you to consider:
GB,
G
- What's up?
- How's it hanging?
- Peace.
- Peace Out.
- Seen any good movies lately?
- How about them (Sooners, Rockies, or your choice)?
- Read any good books lately?
- I got some money for you.
- Wanna dance?
- Have I told you lately that I love you?
- Can I borrow a cup of sugar?
- May the Force be with you.
- Mind if I do that for you?
- Can I get the door?
- You've just won a NEW car!!!
- What's your sleep number?
- How's the play area coming along?
- Can I bring you more wine?
- Would you like these Rockies tickets?
- How would you like to meet Oprah? She's been dying to see you?
- How do you like me now?
- You were in my dream last night.
- I brought you this pumpkin!
- Happy Autumn!!
- Feel the POWER!
- Wanna cookie?
- Gee you look great!!
- Have you lost weight? (even if you know I have not!!!)
- Keep the faith.
- Be strong.
- Mind if I cut in?
- Can you hear me now?
- What's your sign?
- Isn't it a beautiful day?
- Can I get you some coffee?
- Wanna go to the spa?
- I just love your kids, dog, house, car, etc (you pick)
- I found this money tree and wanted you to have it!!
- God bless you.
- How are you?
- How's the family?
- Can I borrow a ten spot?
- Can you help me with this ingrown toe nail?
- Did you see my new car?
- Hey, your dog just crapped in my yard!
- How are the kiddos?
- Can I get a ride?
- Smile! (I hate it when people tell me to smile!!!)
- Can I get you some more blood sausage?
- I believe in hell.
- Have you decided on the corneal donation yet?
- Have you gained weight? (even if you know I have)
- You're my heeeerrrro.
- Hey there big mama!
- Sleep much?
- You've just won a free mountain vacation!!!
- Sorry, mam, but that's gonna cost you.
- I feel your pain.
- Can you mow my lawn?
GB,
G
Tuesday, October 02, 2007
Tuesday, October 2nd - Fabulous Days!!
Hello Friends,
Wow what incredible days we have had recently. I've posted some pics for you to enjoy. First of all I want to say thank you to Susan and The Brown Family and the kids at Primrose in Arizona for a wonderful gift and lovely card! It was such a surprise and we have the banner hanging in our living room so we can enjoy it all the time!! You are so kind and loving to think of Alex and follow his story. We cherish your kindness and loving spirit!!
I also want to thank the following for their generosity and kindness towards Alex and our family:
Judicial Arbiter Group, Inc
Don Kramer and his associates
The Fix family
Missy Hooper
Karlyn and Vikram
Jo-Nell and Katharine
Sky Chair
Kris (OT)
The Honorable Virginia Chavez
Alex Garlin
Patricia and Howard McCarthy
Ben Michaels
The Honorable William Meyer
Kathy Cavanaugh
Valerie, Fernando, Gabriela & Sebastian
Courtney & Steve
Tina, Gregg, Samantha and Aidan
Paul and Diane
Stephanie, Blake & Evan Winston
Ms. Alicia
Ms. Grace
The Slater Family
The Hunter Family
Ben, Crissy, Esther and Wiley
Mark, Thea, Callan and Allyson
Merrie Jones
Joanne Olmstead
Kat
Ms. Olga
Nadine
Heather and Alan
Steve K.
Beecher
Patty
The Honorable Daniel Shannon and Joyce Shannon
Kevin and Cydney
Heather and Duncan
Marilyn and Ben
Annie, Sam, Jackson and Alex
Chantall and family and the TC2 community
Jane and Lucas
Brook, Kelly, Casey and Zack
and everyone else that has loved and supported us through this journey!!
We love you all!!
So, some of the pics show Alex enjoying his new Wii game. Going fast at the Nature and Science Museum with his cousin. Then Alex and friends at the first Play, Pavers and Prayers party. Alex made a beautiful stepping stone and so did his friends. We had to cancel this last Sunday's party due to exhaustion, but will do it again soon (just on a smaller scale).
Then there are pics from the birthday party Jo-Nell, Judicial Arbiter Group, Inc. and the Downtown Aquarium made possible and absolutely fantastic! Spiderman showed up as a complete surprise to Alex and he really made it a very special day for Alex and everyone in attendance. It was incredibly joyous to see Alex enjoying himself and his friends so much!! I know everyone there was moved and felt the wonder of the moment(s). I had a blast but singing the "Happy Birthday" song really took me off guard. I almost lost it right then. I so don't want this to be Alex's last birthday and am putting so much energy into prayer and hope.
Finally, there are pics of Alex on his new track (riding his trike!!!!) and in his graciously donated Sky Chair. Steve and company have built a swing arbor, track and installed mulch in the play area. Also completed are a new fence for the back yard and the transformation of a Bali firebowl into a really neat water fountain with changing lights at night!! This is really coming together thanks to all of the hard work of many dedicated and loving persons! Thank you all!!
Also, I want to tell you all about Alex's introduction to Dr. Jesus. My sister's in-laws drove all the way from Oklahoma to tell Alex a very special story about the greatest superhero of all time, Dr. Jesus. Dr. Jesus' special power is taking away bumps (at which Alex replied "I have a bump!") and he loves healing children the most!! Alex (and everyone there) called Dr. Jesus to come and take Alex's bump and allow him to run and play like he used to do before the bump. Since then, Alex has asked Dr. Jesus to take his dizzy eyes away. This morning Alex proclaimed, "Hey, Mom, I think my bumps are gone. I think Dr. Jesus took them away!" I agreed and told him Dr. Jesus could do that and that he was absolutely right to say so.
There have been so many blessing lately that I can't even recall them all. Steve's dear friends from California came out this past weekend for a visit and my sister and her family were here for the bday party and to offer more support as well. Steve's sister came out as well and had a lovely visit with us. We have been surrounded by so much love that one can only be grateful and filled with the energy and support of those around us.
Alex is actually doing remarkably well. He has slept well at night mostly. And except for some nausea episodes (tummy bug hit this house over the weekend) that are very scary for everyone; Alex has really seemed to enjoy being home. He got upset with me yesterday, when "no friends came over to see him". I had to remind him that his cousin had just departed around noon and that he counted as a visitor. Everyone here is exhausted from the last week or so and I had to call for a break from visitors. I think I am going to have to limit our home visits so that the complete exhaustion does not get more of a hold on us. I still feel like I could sleep for days, but with Alex's medicine schedule, it is impossible to sleep past 7:30am each day. The days get so busy too that I find my self overwhelmed with basic life stuff. I even took a week off from opening mail just because I couldn't handle it!
Okay, well that is all I can think of right now. I hope each of you make this a great day and enjoy those who love you!
God bless!
G
Monday, September 24, 2007
Monday, Sept. 24th - Good Days
Hi Everyone. My sister has asked me several times to update the blog so I thought I'd better do it. On Friday, Nonni bought Alex a Wii video game and life has not been the same since. It's alot of fun and quite easy for Alex to use. He was playing with it on Saturday with his cousin's cousins and someone described the scene as "Alex is laughing from his toes!" I must agree it was so wonderful to see him engaged and happy and laughing. Saturday was spent with Steve and some incredible friends building a fence. I picked up Steve's sister, Christina, at the airport and we enjoyed the last day of summer on the porch.
Sunday started off with a call to hospice for oxygen. We have 7 canisters of O2 in this house and every single one was empty. Alex looked pale and would not talk because he "did not feel like it" so we were told to call 911 and before you knew it you could hear the sirens and our house was full of firemen and then paramedics. It was not how anyone would choose to start their Sunday morning but what can you do. Needless to say, all of the portable tanks will be kept full from this point forward.
Alex started his Valproic Acid infusions on Saturday. He gets them every eight hours and I have to say that schedule is causing alot of exhaustion for me. I have to get up at 4am to take the stuff out of the fridge. Then at 7a I have to be awake enough to mix up the concoctions and administer the drug. This happens again in the afternoon then at 11pm. Each infusion takes 45 minutes and it is imperative that Alex not be off his Medazolam for much longer than that so I have to stay awake while it is going on.
Last night, Alex and Zoe took a bath together for the first time since he got his mediport in July 2006. Zoe loved it. Alex was a bit tentative but he finally started playing. He thought he'd have his pump (Medazolam) hooked up to him during a bath so that is why he put it off for so long. Once I figured that out then it was much easier to convince him to get in the tub.
Yesterday was also the first Play, Paver and Prayer party. Our house was full of so many friends and love that it infused us all with energy and joy. Some great stepping stones were made (thanks Herndon-Chadd family) and a lot of work was completed on the play area too. The water feature was set up and it is so awesome!! It has beautiful lights at night and is so tranquil and soothing! I love it. Our friends also made prayer flags for the four temple chimes in the front of the house. Steve is out buying string now so I can hang the first batch up asap!
The party will continue next Saturday and Sunday and I can't wait. It was exhausting but worth every bit of our energy and once again, Alex had a great time. He even went to the Home Depot twice with his Dad and friend Mark!
So after the first night of sleeplessness due to a grown up pulse ox machine on a kid's body; we took Dr. F's advice and unplugged the darn thing. Sleep has been much better. And Steve and I now switch nights in the "big bed" with Alex and the nursery with ZG. No matter where you sleep, things still wake you up, but at least some sleep is possible.
Today found Alex with lots of energy and smiles. We had talked about going to the Science museum but that did not happen. Tomorrow the "Flashes of Hope" photographer will come by and we will have a family photo session. I can't wait. They did a session with Alex before but ZG was ill and could not come to the clinic.
I want to thank you all for your support and prayers. I believe I am only standing thanks to the strength you send me and the energy I sap from anyone that will hug me!
I have thought of something that would help us out alot! We need someone to walk Roxie and Toby. Roxie is such a wonderful dog, but she is a puppy and a high energy one at that. We would love to work something out so she (they) could get walked in the AM and PM. Let me know ( fightthebump@comcast.net ) if you are available.
Finally, I want to thank Don and his colleagues for their generosity. Your gifts were overwhelming and such a blessing. May you receive tenfolds the prosperity in return.
Okay, I hope that is complete enough for you (Stephanie)!
Love and hugs,
G
Sunday started off with a call to hospice for oxygen. We have 7 canisters of O2 in this house and every single one was empty. Alex looked pale and would not talk because he "did not feel like it" so we were told to call 911 and before you knew it you could hear the sirens and our house was full of firemen and then paramedics. It was not how anyone would choose to start their Sunday morning but what can you do. Needless to say, all of the portable tanks will be kept full from this point forward.
Alex started his Valproic Acid infusions on Saturday. He gets them every eight hours and I have to say that schedule is causing alot of exhaustion for me. I have to get up at 4am to take the stuff out of the fridge. Then at 7a I have to be awake enough to mix up the concoctions and administer the drug. This happens again in the afternoon then at 11pm. Each infusion takes 45 minutes and it is imperative that Alex not be off his Medazolam for much longer than that so I have to stay awake while it is going on.
Last night, Alex and Zoe took a bath together for the first time since he got his mediport in July 2006. Zoe loved it. Alex was a bit tentative but he finally started playing. He thought he'd have his pump (Medazolam) hooked up to him during a bath so that is why he put it off for so long. Once I figured that out then it was much easier to convince him to get in the tub.
Yesterday was also the first Play, Paver and Prayer party. Our house was full of so many friends and love that it infused us all with energy and joy. Some great stepping stones were made (thanks Herndon-Chadd family) and a lot of work was completed on the play area too. The water feature was set up and it is so awesome!! It has beautiful lights at night and is so tranquil and soothing! I love it. Our friends also made prayer flags for the four temple chimes in the front of the house. Steve is out buying string now so I can hang the first batch up asap!
The party will continue next Saturday and Sunday and I can't wait. It was exhausting but worth every bit of our energy and once again, Alex had a great time. He even went to the Home Depot twice with his Dad and friend Mark!
So after the first night of sleeplessness due to a grown up pulse ox machine on a kid's body; we took Dr. F's advice and unplugged the darn thing. Sleep has been much better. And Steve and I now switch nights in the "big bed" with Alex and the nursery with ZG. No matter where you sleep, things still wake you up, but at least some sleep is possible.
Today found Alex with lots of energy and smiles. We had talked about going to the Science museum but that did not happen. Tomorrow the "Flashes of Hope" photographer will come by and we will have a family photo session. I can't wait. They did a session with Alex before but ZG was ill and could not come to the clinic.
I want to thank you all for your support and prayers. I believe I am only standing thanks to the strength you send me and the energy I sap from anyone that will hug me!
I have thought of something that would help us out alot! We need someone to walk Roxie and Toby. Roxie is such a wonderful dog, but she is a puppy and a high energy one at that. We would love to work something out so she (they) could get walked in the AM and PM. Let me know ( fightthebump@comcast.net ) if you are available.
Finally, I want to thank Don and his colleagues for their generosity. Your gifts were overwhelming and such a blessing. May you receive tenfolds the prosperity in return.
Okay, I hope that is complete enough for you (Stephanie)!
Love and hugs,
G
Friday, September 21, 2007
Friday, Sept 21st - Some Good news
Well, Alex is home and seems to be more relaxed. He is on a "dying drug" that is an anti-nausea, anti-seizure and anti-anxiety medication. It kinda makes him stoned. Yesterday morning he said to us with glossy eyes "I am soooo happy." Alex has had several friends over and really enjoyed sharing his Spiderman Welcome Home cake with them all. They loved the blue tongues and lips!!
So one good thing that has come out of the past ten days is that Alex has been given permission to take "real baths". He had two in the hospital and we are still waiting to take one with little sister soon. I want to get him a bathtub handle to help him feel more secure. You should seem him. It is such a simple pleasure and he loves it!
So I just wanted to share some good news. Alex ate pretty well yesterday and we pray that that continues. Thank you all for your comments and love. We love you too.
G
So one good thing that has come out of the past ten days is that Alex has been given permission to take "real baths". He had two in the hospital and we are still waiting to take one with little sister soon. I want to get him a bathtub handle to help him feel more secure. You should seem him. It is such a simple pleasure and he loves it!
So I just wanted to share some good news. Alex ate pretty well yesterday and we pray that that continues. Thank you all for your comments and love. We love you too.
G
Thursday, September 20, 2007
Someday in September, 2007 - Visitor Rules
If you choose to visit Alex, then we ask that you practice great discretion when asking questions and in all discussions. We prefer that you focus on making Alex and ZG happy. We also ask that you wear your GAME FACE! No bawling, weeping, sobbing, etc in front of the kids and actually we don't want to see it either.
I know this is hard, believe me! But if you can focus on the fact that no one has any guarantees on even how the next second of our lives will go and that Alex is here, NOW and it is our job not to waste ANY precious time then you'll have the strength to visit and enjoy this beautiful boy!
Love,
G
I know this is hard, believe me! But if you can focus on the fact that no one has any guarantees on even how the next second of our lives will go and that Alex is here, NOW and it is our job not to waste ANY precious time then you'll have the strength to visit and enjoy this beautiful boy!
Love,
G
Wednesday, September 19, 2007
Someday in September, 2007
So Alex came home today. I thought I would be ecstatic to have him home, but as we pulled into the garage, I realized I was bringing my firstborn home to die. I can not express the depth of sorrow and despair that came along with today's meetings. At one point, I was just begging that Alex not suffer from one of the many scenarios given on his death.
Steve and I have picked several fights with one another just to vent the frustration of the day. Steve did not take signing the DNR lightly and really sunk after that event. I did not like the discussion on the highly possible "48 hour coma" that was to come before death.
I have no idea what to think about. This is so F'd up on sooooo many levels that my mind is constantly struggling on not sinking into despair. Luckily we have friends and family to help us through these dark days.
I'm on the verge of exhaustion so I must go. So much more to share later. God bless.
G
Steve and I have picked several fights with one another just to vent the frustration of the day. Steve did not take signing the DNR lightly and really sunk after that event. I did not like the discussion on the highly possible "48 hour coma" that was to come before death.
I have no idea what to think about. This is so F'd up on sooooo many levels that my mind is constantly struggling on not sinking into despair. Luckily we have friends and family to help us through these dark days.
I'm on the verge of exhaustion so I must go. So much more to share later. God bless.
G
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