At the moment my house is quiet, Dennis and Josh are out with the cows and there are still 3 kids in bed, So I will take this time to update a bit on the conference (as much as I can until the rest wake up.)
Tuesday morning this week, I drove to Dauphin for the conference and as I sat and listened to the story of the lady that was driving with me (she had read the article and has a son with an ABI, she asked if I would mind a partner for the drive up) I was thinking how, "Wow, her story is so different from any of the survivors in my life, but she 'gets' what I talk about!" Then as I was sitting in Dauphin, listening to other stories around the room and then the other thoughts started "I don't know why I am here. Sam is not even in this 'league', maybe I am making a mistake about being here. I should have stayed home and helped Dennis. I feel so silly sitting here thinking that Sam's issues can even begin to compare with what some of these people are dealing with..."
Then the speakers started... and as I sat and listened and learned (ya I was shocked too!), we may be miles from where we were in the beginning but we still have miles to go in other areas, big areas, small areas... and then there is the' territoried' area we haven't even begun to 'explore' yet!
I learned about AMBIGUOUS LOSS.
AMBIGUOUS LOSS-- (defined by Dr. Pauline Boss) an unclear loss either physical absence with psychological presence OR physical presence with psychological absence.
This is something I had felt for years with my dad but people would say I was 'crazy' to think like this. I have always felt that my dad - the person who was my dad- died 15yrs ago and now the man who is left is still 'dad' but not the man I grew up knowing. This is ambiguous loss. My dad and Samuel are both still physically with us but both are different from how they were before their brain injuries. My dad is obviously more so, but there is still a loss with Samuel too. It was so uplifting to hear that I was NOT crazy (ok just not for this area☺) and that it is a 'normal occurence' with family and caregivers. I actually have 2 friends who BOTH told me that it was HORRIBLE for me to feel that my dad was gone, especially when e was right there in front of me! But I am sure that if everyone sat and thought about it, we have all experienced some form of ambiguous loss at sometime. It can happen even when someone does die, but eventually you are able to work thru te grief and go on, other times, like with a BI survivor (or probably ANY survivor), it is hard to 'get over it' when you live it daily.
Here are a few DID YOU KNOW tidbits...
ABI is one of the most common causes of disability and deaths in adults and is the leading cause of death in Canadians under the age of 45.
The annual incidence of brain injury is greater than that of Multiple Scleriosis, Spinal cord injuries, HIV/AIDS and Breast Cancer combined!
There are 3 times as many deaths from BI than from AIDS in the USA in a year.
There are more BI every year than ALL types of cancer combined!
Every Year in Canada, over 60 children will die as a result of bicylce related injuries, the majority from brain in jury.
22% of people with a BI will never leave thier homes.
In Ontario, 92% of men and 100% of women who sustain a severe BI never return to full time employment.
Bicyclists wearing helmuts reduce the risk of a BI by 88%.
Many people who previously would have died from thier BI now surivive, but with a diminished capacity for living.
More than half of Toronto's homeless have suffered a BI - and 70% of those did so prior to ending up on the street!
After one BI, you are THREE times at a greater risk for a second BI and EIGHT times greater for subsequent injuries.
After reading these it really makes me wonder why there is not MORE AWARENESS out there about ABI/TBI!? We need to spread the word and get people learning about this! Learning that BI's are nothing to be ashamed of and there needs to be more support to survivors, famiies and caregivers! Get educated and spread the word!!!!
(I am now stepping down off my soapbox and going to begin my morning... with a cup of coffee, a handful of TBI papers to read and sit on my swing on the verandah! Happy Saturday!!!☺)
Saturday, April 24, 2010
Friday, April 23, 2010
The News Article on Sam
Well here it is -- as 'promised'. I couldn't figure out how to put the .pdf file right on the blog, so you will need to go thru the link.
sams press article
It was mostly right, but where it was 'wrong' was dates for the TBI conference (and I will get some info from that on here as soon as I have time to not only get it on the 'page' but to also gather my thots and proof read it first so I am sure (HA! as sure as I am about anything these days) it isn't blathering...)
Enjoy the article! My favorite part of it (other than the great picture of Sammi!) is that it is written so simply. Whether it was meant to be that way or not, I thot it was great considering it was an article about Brain Injury and it wasn't filled with a bunch of 'mumbo jumbo lingo'.
sams press article
It was mostly right, but where it was 'wrong' was dates for the TBI conference (and I will get some info from that on here as soon as I have time to not only get it on the 'page' but to also gather my thots and proof read it first so I am sure (HA! as sure as I am about anything these days) it isn't blathering...)
Enjoy the article! My favorite part of it (other than the great picture of Sammi!) is that it is written so simply. Whether it was meant to be that way or not, I thot it was great considering it was an article about Brain Injury and it wasn't filled with a bunch of 'mumbo jumbo lingo'.
Wednesday, April 21, 2010
Uh-oh...
Just when I thought we were getting thru to him.... his report card comes home AND football season starts -- all on the same day. **sigh**
A low not passing mark, in English... to be fair to him tho I have been emailing teachers every week so we are able to stay on top of his work AND we have tried to meet with teachers (so far all but 2). But when I email one of the teachers I get no response to my email -- did they get it or are they ignoring me? One teacher I can't get an email to them... keeps coming back to my inbox. I will have to make arrangements to meet with the teachers again this week and let them know I NEED them to respond to my emails with his work thru the week, or else he is going to fail subjects. When we know what his work is, we can stay on top of it -- Math and Social have proven this. I know someone is going to say "well he should tell you OR know if he has homework..." and my response is "yes, he SHOULD know...but then again, the whole purpose for this blog is because my son has a brain injury! Where as most people might remember things like that -- he may not-- then add that he is a typical teen boy, he may try to get away with things if he thinks he can.
Sam knows that if his marks suffer there will be no football... which will make our lives all very unpleasant. We sort of let him have his run with it last fall since it was a major goal he had set for himself, but now he needs to buckle down and get serious about not just working but working at remembering to work! I apologize now for my future rantings about homework and football-- but then again, no I am not something I learned last night is that as caregiver-- I have to rant in a safe forum/environment so that I don't blow on those that I am caring for... so there! ( please know I love you for listening!☺)
SO!! Yesterday was the ABI/TBI conference in Dauphin (as I have been talking about for a while now) and it was simply amazing! The speakers had so much great information. The survivors had amazing insight to things and other caregivers were just so helpful to talk to and listen to! I learned so much yesterday and last night. I will try to post a lot of things here in the coming days, as time will allow me! Today I will just post this wonderful poem. It is not about TBI, it is just about when your child is different. One of the caregivers read this out last night and it made me cry and smile. Enjoy!
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
A low not passing mark, in English... to be fair to him tho I have been emailing teachers every week so we are able to stay on top of his work AND we have tried to meet with teachers (so far all but 2). But when I email one of the teachers I get no response to my email -- did they get it or are they ignoring me? One teacher I can't get an email to them... keeps coming back to my inbox. I will have to make arrangements to meet with the teachers again this week and let them know I NEED them to respond to my emails with his work thru the week, or else he is going to fail subjects. When we know what his work is, we can stay on top of it -- Math and Social have proven this. I know someone is going to say "well he should tell you OR know if he has homework..." and my response is "yes, he SHOULD know...but then again, the whole purpose for this blog is because my son has a brain injury! Where as most people might remember things like that -- he may not-- then add that he is a typical teen boy, he may try to get away with things if he thinks he can.
Sam knows that if his marks suffer there will be no football... which will make our lives all very unpleasant. We sort of let him have his run with it last fall since it was a major goal he had set for himself, but now he needs to buckle down and get serious about not just working but working at remembering to work! I apologize now for my future rantings about homework and football-- but then again, no I am not something I learned last night is that as caregiver-- I have to rant in a safe forum/environment so that I don't blow on those that I am caring for... so there! ( please know I love you for listening!☺)
SO!! Yesterday was the ABI/TBI conference in Dauphin (as I have been talking about for a while now) and it was simply amazing! The speakers had so much great information. The survivors had amazing insight to things and other caregivers were just so helpful to talk to and listen to! I learned so much yesterday and last night. I will try to post a lot of things here in the coming days, as time will allow me! Today I will just post this wonderful poem. It is not about TBI, it is just about when your child is different. One of the caregivers read this out last night and it made me cry and smile. Enjoy!
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, April 15, 2010
as far as days go...
The last week has not been extremely 'stellar' by any means-- again! I have definitely been trying to NOT eat my young ... ☺
With the BI conference coming up on us quickly, Samuel is now claiming to not want to go. So I said he could just go to the one day on Tuesday so he could make it to the banquet and be able to make some connections with other survivors. He readily agreed but now is baulking as football practice starts on said Tuesday and that is fitting for uniforms and such then. Now he not wanting to go AT ALL.
So do I allow him to stay in school and go to football or do I have him go (trying to get football fitting the day before-- if possible) so that he can take some ownership of his injury... I don't want to force him but then again, if everything were always left up to a teen life would be nothing further than pizza, video games, FB and texting.
**sigh**
I want him to WANT to go. He has admitted to getting a lot out of his meetings at the groups we go to in Dauphin and Brandon-- and at first he didn't want to go there either...
I am praying that he will make a sound decision and I have been praying that God will help me to make the right on this too.
**sigh** being the parent sucks sometimes most times -- these days anyway.
Not all issues in our house revolve around BI's. Some of them are because of other things. I had taken Josh into Winnipeg on Tues. for an appt. involving his tailbone (this is 2 years after he had broken it). It looks like I have to take him in (when a date is set) to have a procedure done to 'fix' the tailbone. It is not healing but then how can it when your 6'2" teen will NOT use a rubber OR pillow doughnut to sit on?! Then you have to listen to him complain about the pain in his 'butt' because of the non-use!? ( I am getting gray hairs as I type over this one!)
Then lets add another 12yr old boy AND a 10yr old girl -- both at the cusp of puberty!!!!!!!!!! ARGGGGGGGGGHHHHHHHH
It is seeming that my days are filled with bouts of crying for attention, crying out of frustration, crying from fear of losing my mind....
**sigh**
motherhood is grand....
On a 'brighter' note... the Neepawa Press article on sam came out yesterday. I had forgotten all about it! Seriously! When I picked up the paper last night -- there was a small picture of Sam on the top header! He was a FULL PAGE story on page 3!!! Another keeper for his memory book. I hope that people will read it and maybe think, ask, research about ABI/TBI's and become more educated. (if you are stopping by my blog here because of the article in the paper-- please say 'Hi'! I love to get that 'ding' from my email that says I have a comment to approve!☺)Sam's story followed right after the story about the man in Neepawa that was murdered on the weekend-- shot in the head. So maybe it will work as a reminder that not all people who have severe injuries are all fatal?!
I will post the article when I get it. The paper said that they would send me the .pdf file of it so I could post it here for those of my friends and family who couldn't read it via the paper!
With the BI conference coming up on us quickly, Samuel is now claiming to not want to go. So I said he could just go to the one day on Tuesday so he could make it to the banquet and be able to make some connections with other survivors. He readily agreed but now is baulking as football practice starts on said Tuesday and that is fitting for uniforms and such then. Now he not wanting to go AT ALL.
So do I allow him to stay in school and go to football or do I have him go (trying to get football fitting the day before-- if possible) so that he can take some ownership of his injury... I don't want to force him but then again, if everything were always left up to a teen life would be nothing further than pizza, video games, FB and texting.
**sigh**
I want him to WANT to go. He has admitted to getting a lot out of his meetings at the groups we go to in Dauphin and Brandon-- and at first he didn't want to go there either...
I am praying that he will make a sound decision and I have been praying that God will help me to make the right on this too.
**sigh** being the parent sucks sometimes most times -- these days anyway.
Not all issues in our house revolve around BI's. Some of them are because of other things. I had taken Josh into Winnipeg on Tues. for an appt. involving his tailbone (this is 2 years after he had broken it). It looks like I have to take him in (when a date is set) to have a procedure done to 'fix' the tailbone. It is not healing but then how can it when your 6'2" teen will NOT use a rubber OR pillow doughnut to sit on?! Then you have to listen to him complain about the pain in his 'butt' because of the non-use!? ( I am getting gray hairs as I type over this one!)
Then lets add another 12yr old boy AND a 10yr old girl -- both at the cusp of puberty!!!!!!!!!! ARGGGGGGGGGHHHHHHHH
It is seeming that my days are filled with bouts of crying for attention, crying out of frustration, crying from fear of losing my mind....
**sigh**
motherhood is grand....
On a 'brighter' note... the Neepawa Press article on sam came out yesterday. I had forgotten all about it! Seriously! When I picked up the paper last night -- there was a small picture of Sam on the top header! He was a FULL PAGE story on page 3!!! Another keeper for his memory book. I hope that people will read it and maybe think, ask, research about ABI/TBI's and become more educated. (if you are stopping by my blog here because of the article in the paper-- please say 'Hi'! I love to get that 'ding' from my email that says I have a comment to approve!☺)Sam's story followed right after the story about the man in Neepawa that was murdered on the weekend-- shot in the head. So maybe it will work as a reminder that not all people who have severe injuries are all fatal?!
I will post the article when I get it. The paper said that they would send me the .pdf file of it so I could post it here for those of my friends and family who couldn't read it via the paper!
Friday, April 9, 2010
learning curve...
okay I have been working on getting this blog to be more us and not just some generic run of the mill blog. Somethings that screams ginter!... okay maybe not screams but more like who we are.
And I am getting nowhere! I made a slide file so I could put in the side column but I cant make it work! I made a header for the blog with my own graphics in PSElements and I cant make it work. I thought I had someone to help me with this but apparently he has bailed on me... so I am on my own-- grrrrrrrr. So please bare with me as I am learning this whole wordpress thing. OR if someone else is out there reading and knows how to help me-- I am always open to learning via some help! I think I might like to eventually spend some money on this and buy my own domain(not sure if that is the right words...) but not right now.
Sam has had a few very late nights this week (TBI mtg on wed, cadets on Thurs and tonight will be youth group) and it is all starting to show. tomorrow the cadets are supposed to have a sports day but we will have to see if he is able to handle it. I can see a fatigue break down on our horizon if we dont get him resting.
Sometime this morning I am supposed to get a phone call from one of the local papers for an interview about Sam. They want to put some stuff about the TBI conference and use Sam as a story to go with it. (that is what I gathered from talking with Darren at the paper) Yesterday Darren picked up Sam from school at noon and took him out to have some photos done for the article-- I can't wait to see them! I will post the story when it is done for all to read!
And I am getting nowhere! I made a slide file so I could put in the side column but I cant make it work! I made a header for the blog with my own graphics in PSElements and I cant make it work. I thought I had someone to help me with this but apparently he has bailed on me... so I am on my own-- grrrrrrrr. So please bare with me as I am learning this whole wordpress thing. OR if someone else is out there reading and knows how to help me-- I am always open to learning via some help! I think I might like to eventually spend some money on this and buy my own domain(not sure if that is the right words...) but not right now.
Sam has had a few very late nights this week (TBI mtg on wed, cadets on Thurs and tonight will be youth group) and it is all starting to show. tomorrow the cadets are supposed to have a sports day but we will have to see if he is able to handle it. I can see a fatigue break down on our horizon if we dont get him resting.
Sometime this morning I am supposed to get a phone call from one of the local papers for an interview about Sam. They want to put some stuff about the TBI conference and use Sam as a story to go with it. (that is what I gathered from talking with Darren at the paper) Yesterday Darren picked up Sam from school at noon and took him out to have some photos done for the article-- I can't wait to see them! I will post the story when it is done for all to read!
Monday, April 5, 2010
ahhhhh.....**sigh**
Hear that!? yep... quiet, peace and quiet -- well almost. After almost 2 weeks of having kids at my side (sickness the week before March Break and then the actual March Break) my house is finally my own domain again! Well, almost... Dennis is home and will be from now on. He has applied for a leave of absence at the CFIA (Canadian Food Inspection Agency) and will be working for my mom on the farm here (here being our house) on the cow calf operation. He doesn't officially start until after the 9th of April, but he had some time off coming to him for work so he took it. We will be spending time this week doing yard work, getting sheep ready for spring and hopefully a few finishing touches with the house renos.
Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!) The kids are all fairly excited about this.
This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!
This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.
I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen! I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over! I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...
Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!) The kids are all fairly excited about this.
This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!
This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.
I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen! I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over! I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...
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