So here we are on the eve of Scan week.
I am trying to grasp sanity, with everything I have.
And I have to say, this week it's hard. This world is so messed up!
The earthquake and tsunami in Japan leaves me speechless. I think I have problems.
So, today Ross did something that was a 6.7 on our marriage richter scale. Jolting, but no major damage. Ryan (our 2.4 y/o) was in the kitchen saying "owe, owe, owe". Ross said"what is it, is it you tummy?". And then it happened: Ross turned to me and said, "he's been touching his left kidney area, scratching at it and saying owe, did you notice".
So for most of you this is what? What's the big deal? For the parent of an NB child this is where the white noise fills your head to point where you think it might explode.
Neuroblastoma is often found as a tumor on the left adrenal gland/kidney. We are. . . .NOW . . . Acutely aware of symptoms.
So, I bite and ask Ross why he would say that. His honest answer was fair enough he said he is always looking for it.
But, see, Ross is my rock. I'm the crazy freaked out mother. I'm the one who worries over every fever, worries over every single complaint of pain. I worry enough for everyone. But Ross doesn't, so i thought. And that kept me safe.
So this admission sent me realing. Especially since it wasn't Josh,it was Ryan. Don't go bringing the baby into this!
This shocked me. But at elastic I know Ross is human and real and not so unlike me and maybe I'm not so crazy.
Josh continues to struggle everywhere he goes. I can't help him . . .I'm afraid that changing schools would just show the same problems. Then it really is him.
School counsellor says we need to think about whether peace arch is the right place for Josh. Principal thinks he's delusional and potentially dangerous. I am filled with rage.
I want them all to FUCK. rIGHT. OFF. While I don't want to be that parent, don't they know or have any clue what Josh has been thru? Can't they give him a little bit of a break?
So now we bring him home for lunch every day. Well, I go get him, make him lunch, then drive him back. I don't enjoy this. I hate it.
Ugh, don't have the heart for all the details. I'm trying to remind myself that I am good and it's okay to be good. Yes, that's my counseling homework.
Fuck it. When's it gonna get easier?
In the mean time, I cant help but spoil all Bree kids rotten, cause I never want to regret no doing it when had the chance. Love. Love. Love. My. Boys!
Sunday, March 13, 2011
Wednesday, November 10, 2010
Mommy, have you been crying?
Today I wrote my Son's Eulogy. Nice, Eh?
For those of you questioning, my son is very much alive. He is downstairs eating Dill pickle flavoured rice crackers and watching TV with his brother. It's a four day weekend, so they are in goofy good moods.
Mom: not so much.
Death is on my mind.
My 90 year old Grandmother is Dying. She lives on the other side of the country. As a Child I was lucky to see her once a year and as an adult once a decade. We are not "close". But she's my Grandma, my Moms Mom and she is dying and it's sad. Mostly for my Grandpa who is having a very hard time accepting it and the life changes that he must make - -moving into a home, giving up driving, giving up independence.
Did I mention that next week is scan week? I wrote D Day on the calendar. D Day, because that's the day we find out if the mystery spot is still on Josh's Liver, i so, what is it, has it grown, is this relapse. I'm extremely anxious. Every bruise, every sore this, that or the other has me convinced of relapse. I want to think positively, but negative thoughts invade and replay all day and night in my mind. So Josh asks me yesterday why I wrote D day on the calendar. Why? Can't really say because I'm afraid it's our family's D Day. So, I lied and said it was for Dr. Davis Day. He seemed satisfied with that, and then explained that there was, you know, another meaning for D Day and it had something to do with war and people dying. Hmm, Really?
Today I had to drive to Abbotsford to drop off a CTMH order . . . so that's about an hour and a half in the car alone with my thoughts while Ryan watches Milo and Otis for the 367th time . . .
My thoughts turned to Josh's Stupid Tree. This is a beautiful Norweigian Pine Tree that Josh won out at our Cabin about 6 months before diagnosis. He ran up through the crowd to see what he'd won and when he saw the tree he very loudly said " I won a STUPID TREE?!". Reminder that Josh was Josh even before Cancer. Anyway, because there was such a crowd at our cabin when he won, lots of people ask us about "Josh's Stupid Tree". How is "Josh's Stupid Tree"? "Josh's Stupid Tree" is happily planted in our backyard, beside the Alder tree that will have to come down one day soon and will hopefull grow in it's place. I love the story and love the tree.
So then I thought, at Josh's funeral we will give everyone a Norweigian Pine seedling and ask that everyone plant one of "Josh's Stupid Trees". Maybe even have little tree plaques made that say "Josh's Stupid Tree" so that maybe 100 of these trees would be scattered all over. Keeping a memory of my little man on this planet for just a little while longer. Of course, my head turns to logistics: could we afford that, would we be able to get them on short notice, would 100 people even show up at his funeral? Do that many people love my kid? Can my huge, enormous amount of love make up for it?
So I thought of the stories I would tell, about how I cried the day I found out I was pregnant with Josh, and feel so guilty for that every single day. Mostly just how empty and quiet our life and home would be without him. So, I cried the whole drive home thinking of such things.
I blame Carol Berner. She was found guilty of drunk driving and killing sweet little Alexa Middelear. Yesterday I saw her parents on the news after giving their victim impact statements in court. They talked of how small their family was without her. God, I get that. They talked about how at 45years old the couple was looking into IVF to try to grow their family because it was just too small. I look at Ryan and smile through my tears. I GET IT. Ross and I fought that three years ago - just fighting Josh's Cancer and facing that he MIGHT die. We knew it would kill us. So one day Ross said to me "I'd rather have 3 children than 1". And about 9 months later Ryan arrived. I GET IT. I hate it.
So, I have the Eulogy planned, for a seemingly healthy kid. Is that therapuetic or just as mental as I suspect?
For those of you questioning, my son is very much alive. He is downstairs eating Dill pickle flavoured rice crackers and watching TV with his brother. It's a four day weekend, so they are in goofy good moods.
Mom: not so much.
Death is on my mind.
My 90 year old Grandmother is Dying. She lives on the other side of the country. As a Child I was lucky to see her once a year and as an adult once a decade. We are not "close". But she's my Grandma, my Moms Mom and she is dying and it's sad. Mostly for my Grandpa who is having a very hard time accepting it and the life changes that he must make - -moving into a home, giving up driving, giving up independence.
Did I mention that next week is scan week? I wrote D Day on the calendar. D Day, because that's the day we find out if the mystery spot is still on Josh's Liver, i so, what is it, has it grown, is this relapse. I'm extremely anxious. Every bruise, every sore this, that or the other has me convinced of relapse. I want to think positively, but negative thoughts invade and replay all day and night in my mind. So Josh asks me yesterday why I wrote D day on the calendar. Why? Can't really say because I'm afraid it's our family's D Day. So, I lied and said it was for Dr. Davis Day. He seemed satisfied with that, and then explained that there was, you know, another meaning for D Day and it had something to do with war and people dying. Hmm, Really?
Today I had to drive to Abbotsford to drop off a CTMH order . . . so that's about an hour and a half in the car alone with my thoughts while Ryan watches Milo and Otis for the 367th time . . .
My thoughts turned to Josh's Stupid Tree. This is a beautiful Norweigian Pine Tree that Josh won out at our Cabin about 6 months before diagnosis. He ran up through the crowd to see what he'd won and when he saw the tree he very loudly said " I won a STUPID TREE?!". Reminder that Josh was Josh even before Cancer. Anyway, because there was such a crowd at our cabin when he won, lots of people ask us about "Josh's Stupid Tree". How is "Josh's Stupid Tree"? "Josh's Stupid Tree" is happily planted in our backyard, beside the Alder tree that will have to come down one day soon and will hopefull grow in it's place. I love the story and love the tree.
So then I thought, at Josh's funeral we will give everyone a Norweigian Pine seedling and ask that everyone plant one of "Josh's Stupid Trees". Maybe even have little tree plaques made that say "Josh's Stupid Tree" so that maybe 100 of these trees would be scattered all over. Keeping a memory of my little man on this planet for just a little while longer. Of course, my head turns to logistics: could we afford that, would we be able to get them on short notice, would 100 people even show up at his funeral? Do that many people love my kid? Can my huge, enormous amount of love make up for it?
So I thought of the stories I would tell, about how I cried the day I found out I was pregnant with Josh, and feel so guilty for that every single day. Mostly just how empty and quiet our life and home would be without him. So, I cried the whole drive home thinking of such things.
I blame Carol Berner. She was found guilty of drunk driving and killing sweet little Alexa Middelear. Yesterday I saw her parents on the news after giving their victim impact statements in court. They talked of how small their family was without her. God, I get that. They talked about how at 45years old the couple was looking into IVF to try to grow their family because it was just too small. I look at Ryan and smile through my tears. I GET IT. Ross and I fought that three years ago - just fighting Josh's Cancer and facing that he MIGHT die. We knew it would kill us. So one day Ross said to me "I'd rather have 3 children than 1". And about 9 months later Ryan arrived. I GET IT. I hate it.
So, I have the Eulogy planned, for a seemingly healthy kid. Is that therapuetic or just as mental as I suspect?
Monday, October 25, 2010
Welcome one and all, sorry for the confusion
I must preface this by saying . . . I have no intention of moving to Grand Forks. However, its a nice little town and the hills outside town hold many hundred year old mountain farms that I fantacize about running away to when it all gets to be too much for me.
Many days feel like they are too much. So I think about it alot. And it seems like almost every day I have a new reason to sell the house, pack the kids and the dog, and yeah and my husband and head for the hills. I have 1002 things tying me to home, so no worries friends.
Yesterday at my oldest Son, Alex's, hockey game the Baby (2 year old Ryan) pulled something from the Diaper Bag. It was a miniature diaper. A real, miniature diaper made for premature babies. It's tiny. It came in the mail from Children's Hospital . . . our most recent fundraising, beg for money sob story. You know the ones . . . "Our precious angel was saved by Children's Hospital, this is the size of diaper she wore when she was newborn. we thought she would die, but the brilliant doctors at Children's Hospital saved her. Your generous donation can help save more children like ours".
Tell me you've never received a letter like this. Anyway . . . why I kept the Diaper I have no idea. Since I tore the letter up, crumpled it in a ball and tossed it in the garbage. Wishing to never get another. Thinking, leave me alone, I've got my own sob story. Terrible, eh?
Am I jealeous that my sob story isn't making the fundraising letter? Huh, maybe. More just ticked at the reminder. Because sometimes I can go, like, four hours without thinking about neuroblastoma. But a fundraising letter like that reminds me. It's like a knock at the door; "Hello, who's there?". "It's me, your childs stage four, high risk cancer - - just reminding you that I still run the place and I can take over any old time I want, now have a great day"
Oh I should be so happy, I should be so releived. Please don't get me wrong, I am. But I live daily with the knowledge that my Sons cancer could, statistically probably WILL, return at any time. Josh beat the 20% chance of survival odds and is now cancer free. But relapse . . . relapsed stage four neuroblastoma has a 100% chance of fatality. 100%. Fatality. I dislike those odds greatly. I look for signs, symptoms of relapse constantly.
So I fear Cancer knocking on our door, and I despise all reminders. Yet I cannot stop thinking about it. So why was that miniature Diaper in the Diaper Bag? I thought I tossed it out too, months ago. And, I'm holding back tears as I try to explain why there is a premie Diaper there. Who cares. But there I was enjoying Alex's Hockey game, enjoying our life and "knock, knock".
If we moved to Grand Forks would cancer be able to find us? Beleive me, I would not leave a forwarding address.
Many days feel like they are too much. So I think about it alot. And it seems like almost every day I have a new reason to sell the house, pack the kids and the dog, and yeah and my husband and head for the hills. I have 1002 things tying me to home, so no worries friends.
Yesterday at my oldest Son, Alex's, hockey game the Baby (2 year old Ryan) pulled something from the Diaper Bag. It was a miniature diaper. A real, miniature diaper made for premature babies. It's tiny. It came in the mail from Children's Hospital . . . our most recent fundraising, beg for money sob story. You know the ones . . . "Our precious angel was saved by Children's Hospital, this is the size of diaper she wore when she was newborn. we thought she would die, but the brilliant doctors at Children's Hospital saved her. Your generous donation can help save more children like ours".
Tell me you've never received a letter like this. Anyway . . . why I kept the Diaper I have no idea. Since I tore the letter up, crumpled it in a ball and tossed it in the garbage. Wishing to never get another. Thinking, leave me alone, I've got my own sob story. Terrible, eh?
Am I jealeous that my sob story isn't making the fundraising letter? Huh, maybe. More just ticked at the reminder. Because sometimes I can go, like, four hours without thinking about neuroblastoma. But a fundraising letter like that reminds me. It's like a knock at the door; "Hello, who's there?". "It's me, your childs stage four, high risk cancer - - just reminding you that I still run the place and I can take over any old time I want, now have a great day"
Oh I should be so happy, I should be so releived. Please don't get me wrong, I am. But I live daily with the knowledge that my Sons cancer could, statistically probably WILL, return at any time. Josh beat the 20% chance of survival odds and is now cancer free. But relapse . . . relapsed stage four neuroblastoma has a 100% chance of fatality. 100%. Fatality. I dislike those odds greatly. I look for signs, symptoms of relapse constantly.
So I fear Cancer knocking on our door, and I despise all reminders. Yet I cannot stop thinking about it. So why was that miniature Diaper in the Diaper Bag? I thought I tossed it out too, months ago. And, I'm holding back tears as I try to explain why there is a premie Diaper there. Who cares. But there I was enjoying Alex's Hockey game, enjoying our life and "knock, knock".
If we moved to Grand Forks would cancer be able to find us? Beleive me, I would not leave a forwarding address.
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