Long time no update!

I know, I know... I havent posted on here in forever. I apologize and my excuse is that life got so busy and out of control, there was no time for sitting here and doing just this! And not that there is nothing to update... sigh... sorry.

Well first to back track a bit, the presentation I did went good I think. I rambled a bit but tried to stay on topic (but when talking about TBI sometimes it seems like I , myself have one, as there is sooooooo much information and things to share!) I intend to sit down this summer and write out a presentation -- if for nothing else - for me to get things in order in my head.  There were not many parents at the meeting (maybe 6 in total) so it was easier to talk but when a few tears were starting to be seen I had a bit of trouble staying focused and not crying myself.

 In the month of June I made 1 trip to Winnipeg with Josh and Sam and one with Sam and Dennis. The first one was so that Sam could meet with Dr. MacD. and have a consult on a surgery for having a plate 'put in' to cover over the 'hole'-- we are really hoping that this will be done this summer. (and it is looking like it could very well BE done this summer!!) It was all Sam with this. He came to me one day this spring and asked if we could talk and then he told me why. He wants it done because kids at school (some of his best friends too) will stare at the scar and watch his heart beating, they want to touch the area still, just being curious teens but it really bothers him. I told him that it was a good enough reason, since HE was the one who has to live with this. Sam also likes to have his hair very short-- he ALWAYS has and now he keeps it longer (not good for cadets) and it irritates him. Dr.MacD said the same thing I told Sam and then Sam had a few days to think about the risks and whatnot but in the end did decide to go ahead with it. So we will have another trip into the city for a few days while he has this done. (AND our awesome TBI co-ordinator Gail, is going to be sending a letter to the Ron. McDon. House to try to get us in there again since it is going to be a serious surgery-- I love her! She knows the financial drain that TBI's can cost a family and a week in a hotel would put almost anyone in the por house!☺)

The next day in Winnipeg (cuz this was a 2 day trip) was for Josh to get his tailbone fixed. He had to go in for a day procedure and they manipulated it back into place--but it didn't "CLICK" back, so it is a bit of a floppy joint. Joshua's job until the end of July is to keep an eye on the pain and discomfort. If it doesn't get any better OR gets worse when we go back in to see Dr.J., he will be refered to spinal surgeon to have the bone removed.

The following week, I was back in the city with Sam (and Dennis) to see Dr. G. We filled him in on what was happening with Dr. MacD, with things at home (sleep, school, headaches etc). We are still having issues with Sam's sleeping. He has periods doesn't sleep well at night -- waking up a lot, not being able to sleep. We have gone to a sleep clinic but the results from it were that all was normal... LOL ... normal. There is quite a tory behind THAT fiasco of a visit -- but to keep it short, it was not a 'normal' sleep night or a 'routine' set up for the sleep lab. So our dr. has been trying since then (that was in Dec. '08) to get him back in for another appointment but they wont answer his letters OR his phone calls! Sooooooooo... Dr. G. is going to first send Sam to an ENT to check out his sinus passages (I apparently have extremely narrow passages -- so maybe he has inherited it from me) and see if there is anything there that is causing him trouble. From that appt. they can ither A.) fix the sinuses (and possibly result in sam sleeping better) or B.) get him into the sleep lab faster (apparently this dr. can work miracles with the sleep clinic!) Either way, we are hoping for a bit of news on the sleep front! If Sam can get better sleep at night that is 1/2 the battle with him. Fatigue is not so much an issue, he can deal with things better (who doesn't), he will be able to function in most areas better if he is sleeping!!

This might all be sorted out this summer to as Dr. G. wants it done before Sam sees Dr. MacD. for the surgery, BUT Sam is gone for most of July to Air Cadet Training in Penhold, Alberta. He leaves July 9 and isn't back until the 23... so there might be another extremely busy month for us.

Both Josh and Sam were on the football team for the spring league and I actually got a great picture of the 2 of them in their uniforms at the last game! And this is the picture of Josh on Saturday, June 19th. My baby turned 16 and he got his first truck(a gift from my mom). It needs a lot of work but he loved it! It is a Ford F68--not too sure on the year but it is a beaut! Can't wait for him to get it running!

janglin' nerves

I am typing this from my van outside the public library tonight--waiting to go to the elementary school/trying to hide from anyone that would know me --aka the kids/trying to find my sanity... sigh.... nope not here either

I am giving a presentation on TBI tonight at our elementary school... and I have lovely butterflies in my stomach right now! I have on my computer what I want to say but I just hope it comes out right and  not as jumbled as it feels in my head! BI's before but never to a group of people... I hope I am able to keep not only my emotions in check but my info too!

Things have been fairly hectic still at home but we ARE seeing the end of the calving-- YAY! So hopefully we can get back into a normal routine with the kids. I have to be honest here and say that I really do feel that I have not been the best mom I could have been these last few weeks. I am always ready with an excuse as to why I am tired or grouchy (answer here is typically running with calving with Dennis, football with boys, drivers ed with Josh, Air Cadets with Sam and Ike, cooking, cleaning, dishes (my dishwasher is on the blink GRRRR), blah blah blah...) there are a million reasons why. But today it stops... HERE!

I will be working better to stay on top of the boys with their homework (since spring football season started we have been slacking), their rooms and laundry, spending time with Hannah, and crossing fingers here-- doing more baking again!

Does anyone else ever feel like they need to have at least 3 or 4 of themselves running around-- or have a 'plasti-mom' life? How do others do it? I am seriously assuming that I am NOT the only worn out, tired to the bone, sick of it all and let's do a road trip mom out there?!

 .... am i?

So here it is... laying it out there for all to see and to confess to...

 how do you stay sane?

how do you keep it together when you feel more like unravelling?

Come on people... give me your best answers!!! are you a closet chocoholic?

Do u tie your hubbies socks in knots when he ticks you off?

Do you write stuff on the tv dust and blame it on someone else?

LOL looking back at this list, people may think I need to be committed (I  honestly don't do any of these things--- but I might start☺) but if someone is willing to have me committed for a bit--please do not leave a forwarding address to anyone...I dont want visitors to disturb my quiet time! ☺☺☺

Interesting tidbits...

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!!!☺)

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'.

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!

"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.

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!

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!

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...

One day at a time...

wasnt that a TV show!? (LOL for those you who really know me... I love 70's and 80's sitcoms)☺

but that is our motto in this house!

As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).

Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.

Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover  the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that  he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again.  And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much.  So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.

Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.

He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.

Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!

My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!

Moving Day

Yes... we have moved!

http://www.visibleangels.wordpress.com/

see you there!!!

Boy oh Boy! When you go to bed at 11 and are up at 5 the night just doesn't seem long enough!! Dennis and I took Sam to the Brandon meeting last night and had a good talk on the way home with him. He really enjoys going and learning that he isnt alone in this-- that there are others out there that 'get him'! There was a discussion about the P.A.R.T.Y. (Prevention for Alcohol Risk-Related Trauma in Youth) (please click on link to see the idea behind this AWESOME program!!!!) and that it is going to be in Brandon and one of the caregivers thought that it would be awesome for Sam to be one of the survivors to speak to the teens of what it is like to survive AND live with a TBI since he is closer  to their age.  We had talked to him about it but at this time it is too early for him to talk about it. He needs to learn to live with it himself before he shares his story to strangers. But I asked him to think about it for something to maybe do in the future.

We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!)  But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!

On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!

New Address

Yes, I have moved the blog! I was not happy with what I could do at our  'old' place and I like the way that WordPress gives me more options! (just what I need!)

Well I am soooooooooooo happy to announce that our house in Neepawa is SOLD! YAY! Thank you God for sending the right people to buy our home at the time You felt was best! (I am in that hindsight frame of mind right now... ☺) So in a way the new address is for more than the blog!

Tonight we are off to another TBI meeting. This is the one in Brandon that Sam likes, but the real reason for us going is so I can share the information on the TBI Conference in April. We will take Sam to these meetings once in a while but due to distance and the fact that we feel that he will get more out of the Dauphin group once he gets more comfortable with them we will go to the Dauphin meetings more regular.

I have busy, busy again last week getting things in order for what I need to do to help with the  awareness for the conference. I have a few people in mind to talk to and see about things, I have many posters made to put up, brochures to hand out and people to talk too! I can't wait til Thursday when I am going to town to do this! (i have spoken to most of these people already ... but just getting out and face to face spreading the word of TBI awareness... thrilling.

I sent out my emails this morning too, to teachers about Sam's weekly school work and so far no replies to the email.  I was told by the school division to send the emails to the teachers, that they would reply fairly quickly. I know it is only Monday afternoon but I sent out emails last Monday and really only got one reply. I put a read receipt on the emails and very few of them have come back either\(or an acknowledgement that they read the email!!!)... So I will wait and see this week, then I will go to the next step (not too sure what all that is right now tho)

wishing I could take these mitts off...

I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today.  As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!"  now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.

Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND  b.) be going home.

I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?

The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him).  Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with.  Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are  3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).

Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)

 I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...

wishing I could take these mitts off...

I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today.  As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!"  now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.

Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND  b.) be going home.

I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?

The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him).  Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with.  Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are  3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).

Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)

 I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...

3 men and baby?!? um no just me

I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.

So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!

First is Sam.

My Sammi.

He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...

As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)

Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!

Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!

I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...

First is my dad.

He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman  with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. 

On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)

That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.

Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know.  We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.

He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI). 

There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).

When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.

The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!

My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%)  things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but  try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.

6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness  and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.

TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.

3 men and baby?!? um no just me

I have been wanting to post this for a while now but due to other things happening (both blessings and not so much blessings) I seemed to put it off more and more. But today I thought I would sit and spend the next day or two getting it all (or as much of it as I can) out and on here.

So please indulge for me for a bit while I tell you about 3 (of the 5) men in my life that are my blessings and my cause for many tears, of both happiness and frustration!

First is Sam.

My Sammi.

He was my biggest baby at 8lb 13oz and from there on was at the low end of the birth rate scales -- now being my 'smallest' (extremely lean and thin at 5'8" and just barely now 123lbs). He was my quiet baby that would grunt softly for feeding times and he loved to snuggle with me. He was 'my' boy just as Josh was 'dad's' boy...

As you know this blog was started because of an accident that he had on July 29/08 with a .22 calibre rifle that accidentally discharged and struck him in the head -- resulting in a TBI (Traumatic Brain Injury). At this moment in life ( and I am SURE forever) he is my constant reminder that God DOES perform miracles and we should look for them everyday but he is also a reminder that God allows things to happen so He can work thru you, so that other things (maybe another miracle) can happen to someone else (or even yourself!)

Our home usually has daily drama that has occured from either a.) a TBI moment/issue/backlash b.) teen angst or c.) cuz I truely believe God has a wonderful (and possibly warped) sense of humour! I am sure this is the same with every other house in Canada, USA and the world, but when it is happening in your kitchen -- and you are in the centre of it-- nothing else is happening anywhere else in the universe but there!

Sam has been working hard to not only reach his goals but he usually surpasses them by huge leaps and bounds and in a time that is unbelievable to not only us (as parents) but to the doctors as well. All you really need to do is go back and read a few posts from last year to know what I am talking about here... heck go back and read them all to get the full affect of the whole situation!

I wanted to make this post tho to also introduce you to the other 2 men in my life that are not only challenges but huge incredible blessings from God. These are men who yes, do challenge my patience, my sanity and my creativity...

First is my dad.

He is now 62yrs old and lives in the local Personal Care Home near us. We see him every week (sometimes a few times) for visits, ice cream, apple pies, dinner, etc. He was my daddy. He was my knight in shining armour as a little girl, as a teen and yes even as a grown woman  with 2 small children (at the time of his 'accident'-- he was 48) He had many, many faults(dont we all!?!) but as with most girls- their dad is the best. 

On Dec 16, 1995 Sam was born in Neepawa, Manitoba, Papa (my dad) was called to announce the birth(he lived in Bruderheim,Alberta), 4 days later both Sam and I were allowed to go home and on Dec. 22 somewhere around 3AM there was a knock on our door and there stood my dad. Smiling, tired but smiling and wanting to see his grandsons, Josh and Sam. We spent a great Christmas with him and when he left for home on the 27th early in the morning he gave me his favorite jean jacket, kissed and hugged me goodbye and promised to call when he got home. He did and he and I spoke on the phone at least 2-3 times a week after that until Aug long weekend 1996. (I still have the jean jacket ☺)

That was the weekend my mom was remarried to Dwayne and my dad was beaten up by his almost exwife's boyfriend with some help from her too. I wont go into the gory details surrounding the beating but it is enough to say that my dad is now a limited mobility quadripeligic with severe brain damage that has him more like a 7-8 yr old most days (on a 'good' day). I treasure that Christmas with my dad. It was an amazing gift from God, something that I will always hold dear in my heart.

Now my dad has more off days than on it seems. He will talk more with Dennis or the kids than with me, but maybe that is because our last conversation we had had (on the saturday morning of my mom's wedding)ended in a disagreement...I dont know.  We are never quite sure what is going on in his head so we are very cautious with what we tell him (he doesnt know about Sam's accident) in case in his more lucid moments he worries and frets about things.

He almost ALWAYS know Dennis and the kids, my mom and his siblings but sometimes I am a sibling or someone totally random. He was at Dennis' wedding but not mine! (Dennis assures me I am his first wife☺) I had thot maybe my dad would confuse me with my mom (Debbi) since we look alot alike and call my daughter Hannah 'Jodi' (since we also look alot alike!) but he has NEVER made that mistake. (Isaac and Hannah were both born after his TBI). 

There are many issues that we regularily deal with, with my dad but its all good. He is in a wonderful PCH that has great nurses and aids and other staff supports. We are able to see him more regular now that he has moved here with us to Manitoba (he was living in Alberta with his gf (who looked after his care) up until about 6 years ago).

When we ask my dad to sing songs with us he can do it without thinking but ask him what he did today and sit back for a giggle cuz some of his days are great! Once he was with my granddad buying a new car off the showroom floor! (I checked this story out and it never happened) Another time was when he moved from the old lodge to the new facility he thought he had moved to Gravenhurst, Ontario (this is where he is from) and he was determined that he did... so we let him think it, since the next day he knew where he was (in Neepawa). Somedays he is all smiles and kisses for me and then there are the days where he is glaring and telling me to (insert swear here) off... he tries to bite hands (a defense mechanism for him), he laughs at jokes, he will ask for beer... he will sleep thru a visit and snore to his hearts content...that is my dad now.

The other amazing guy in my life is the love of my life, Dennis. He is my best friend not just because he is my husband, but because we were very close 'best friends' before we started dating. We were friends first and that is why I truely believe we are best friends and still married now!

My husband also has a TBI. He is a high functioning survivor of an undiagnosed TBI. When he was just a teen (17 i think) he was in a truck accident with his brothers and was tossed pretty good in the process. But when he can really pinpoint his own 'issues' was when he was driving a truck (with a friend)that hit the second engine of a moving train(this was in 2000). They were both thrown from the truck and the friend, saddly died. But since then Dennis suffers from many of the same issues as Samuel. He needs to have a daily planner to stay organized, he will explain things -- to death ☺-- so that he is sure that HE understands what he is talking about. He relates most (99%)  things to farming (someting he can tangibly see and identify with -- I had to learn that 'prettier than a prize heiffer on fair day' was actually a compliment). He has no real memories of his childhood (he thinks most of what he 'remembers' is due to listening to the family tell stories). I know that when you hear these things you say"ya but we all do these things to a degree' but  try doing it and having to actually WORK at thinking ... it isnt just a natural occurance for people with a TBI. Dennis will have episodes of fatigue, moodiness, overload of senses and general unease. Dennis' accidents were in a time (and a town) that was before looking for or at TBI as a result of accidents. There was no brain swelling with him so there was no cause for concern... til now. Not that there is concern but there is an awareness.

6years ago I went back to college to get my Educational Assistant Dipolma and learned alot about issues with children I would have to learn to work with in a school setting. One of our papers (the major paper) was to choose an 'issue', I chose TBI as it was prevelant to my life and I wanted to know more about what it was doing to my dad and how to use tools to help him and others in my daily life and work. As with most term papers, you get immersed in it and things that were foggy and fuzzy to begin with start to take on more shape and that was when I realized that Dennis had a TBI. Dennis was also going to college to get his Agribusiness  and passed the course not only with flying colours but with distinction, and 3 scholarships and cash awards. He also won an award for his business plan that he developed for our our sheep farm! So you see where I am going with the high functioning TBI...neither Sam or Dennis' intellect was dimished due to their TBI-- just thier patterns of thinking, organizing and processing information.

TBI is huge and daily (and I mean EXTREMELY) daily in my life. So please bear with me when it seems I go on at lengthy extents about it. I need to do this in order to keep going and stay sane. I am in the process of working hard to bring more awareness to TBI survivors AND caregivers! we tend to get really lost in the shuffle of it all and sometimes when the survivor is getting lost through the shuffle we are fighting harder and harder to hold us both above water to keep us from drowning.

Crazy is as crazy does...

I want to cry...

I want to throw a fit...

I want to throw SOMETHING ...

then I want to cry some more...

We met with 2 of Sam's teachers last night and that is how I felt when we left the school.

One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or  his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers.  And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.

We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.

It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!

I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.

I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .

I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!

After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...

I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....

I had hoped for a different posting this week but apparently it will wait for another day.

Crazy is as crazy does...

I want to cry...

I want to throw a fit...

I want to throw SOMETHING ...

then I want to cry some more...

We met with 2 of Sam's teachers last night and that is how I felt when we left the school.

One teacher seemed to 'get it' to a point with what we were telling her- Sam just needs some extra help with organizing his work, to stay on task and to get work done. He DOES NOT need to have things made easier for him (meaning he doesnt need his work 'dumbed down' for him -- for lack of better terminology). The other teacher I am not sure understood what we were trying to do for Sam. I felt like he thought we were babying him -- in other words there is nothing wrong with him 'really'. The teacher commented that if it were his child he "wouldnt think twice about having him at school 5 days a week and give him a 'spare' once a day'. I wanted to explain to him (to 'dumb it down' for him) that Sam needs the one day at home for REST and one period a day AT SCHOOL is not rest for his brain. For one, when he is behind in something teachers would take that 'spare' and use it for him to get caught up (no rest...) or, two,he would use it to play on computers or  his iPod (no rest...) since he IS still a teenager!When Sam is at home on Wed. he is doing nothing but laying on the couch to rest his brain! (There is no computers, video games or other things that will cause his brain to work over time!) This is a teacher that has just gotten Sam in is class room (new semester change) and I am sure hasnt read any of the literature that I gave the teachers.  And we ARE working on having Sam back to school 5 days a week in April and take one Wed. off every 2 weeks (this was on advice from the NEUROLOGIST!) I also had to explain that this brain injury could take YEARS to heal-- it is not 'better' just because the scar is healed up on his head.

We did finally settle on some things to help Sam with the classes. In Social Studies, he will work on daily work and have open book tests (so there is no stress about studying for him). In Math he will work on his booklets and some work in the text books and he will be checking in with the teachers when things get confusing.

It was very hard explaining Sam's behaviour with him there too. I had to say things that were embarassing for him to have me say to the teachers but it needed to be said so that they could understand... I hope and pray. I had to tell them about his reverting to immature behaviours when he is overwhelmed or when his sensory overload kicks in -- but I wonder if they got it or if I was making excuses for him. I honestly dont know if they get that he has a BRAIN INJURY!

I was trying to get across something that I have been telling people(not just teachers) since the beginning about organization in his brain and life and the other day I finally got how to explain it that HOPEFULLY people would get (and not always make me feel less with 'well he IS a teenager and that is normal' attitude) It was this: YES he is a teen with normal teen issues and YES most teens are not overly organized or together with school BUT the big difference is that eventually 95% (or so) will EVENTUALLY get it together! If Sam doesnt learn now how to do that his brain will never learn as it is still healing and needs to learn how to reroute his thought patterns NOW so that he can have those tools for later in life.

I did send some YouTube videos out to the teachers and the school division that had a lady with a TBI and she explains things in suc a way that I never could (she and her videos can be found HERE) Te hope had been for the teachers to watc the videos BEFORE we met with them but apparently the internet at the school is slow or something and they were unable to watch them but another teacher did manage to watch them and said that they helped to to understand what Sam (and us) must go thru! (wehavent met with this teacher yet--this semester) .

I wish people could understand that we are doing what we feel is best for Sam, that the doctors dont even know exactly what to do or how to deal with this as he is doing so much better than expected. So here I sit feeliong like I am going crazy with Sam and maybe I am not doing what is best for him. Maybe I am screwing it all up and making life worse for him, I dont know anymore! I feel so horrible to even THINK that maybe it would be easier if he were worse then at least people would SEE that there are issues. I once told a friend that I was actually jealous of her with her son (he had cancer) because people just took everything they were going thru at face value-- just that ... while we are fighting to get one or 2 people to understand the frustration that we go thru on a daily basis! People will accept things of people with diagnosis' that are more prevelant in the media or in thier lives than they will with ones that are seemingly less so-- if only they knew how "common" Brain injuries are!

After our meetings and other appts. we dropped Dennis off at his car (he had a meeting last night) and we drove home and let me tell you that was not a pleasant drive. Both Dennis and I could see the change in Sam as we were with the last teacher. His whole demeanor changed and I knew I was in for a night and once in the car so did the other kids. No sooner had we walked in the door of the house and it started. The other 3 kids knew Sam was in a mood so immediately they were on the defensive and that started a well versed production in our lives. Once everyone had chores done and dinner on the table I had it out with them and trying to get things back to a respectful level. It was 8.30 before things were 'right' with the house...

I think I need to get back to writing more frequently on here again. There is just too much to put into one post without feeling like I am rambling or babbling....

I had hoped for a different posting this week but apparently it will wait for another day.

Simply amazing...

God is still working His miracles and amazing me! We have been praying to find support for not only Sam and other survivors but also for us as caregivers and BAM! Yesterday I found a site (cant even remember where it was) that had a phone number on it for a TBi group in Dauphin. I called today and almost an hour later not only had a date and time for meetings (that meet together then split into survivor and caregiver groups) but also has an upcoming conference on TBI, and many people who are really adovating for more TBI awareness and support!!!!! Can you see me smiling!? ☺ I am so excited about this!  We still havent heard if tonights group is meeting and I think we will go to it to see what it is about too but there is now OPTIONS for where we want to go!
Myra (the Dauphin lady I spoke to) asked me if I would be interested in doing some phoning around our area to the local papers and MLA and when I did-- one of the papers will not only do a write up on it but wants to do a follow up on Sam to tie it all together! (this is the other local paper-- not the one that did the first write up on him!)
WOW-- God you are amazing and I love how you can take a prayer and not only answer it but knock me on my butt with that answer! You are an awesome God. Thank you so much for ALL the 'little' prayers you answered in the few phone calls I made today...

I am speechless .... I know-- I know -- I know... now you are amazed! lol

me? who.... whhhhaa?

Do you ever get that feeling like you should maybe take the kids to the doctor but you KNOW that as soon as you do they will be perfectly fine and you will be left looking like one of those mothers that has Munchausen by proxy!?  Some days (ok a lot of the time) I feel like this.... especially with Sam.
This morning as I was taking the kids to school he tells me that as they were going to visit my dad last night before air cadets, that when they walked in the PCH his vision went goofy on him. He had no peripheral vison (when the accident happened Samuel lost all peripheral vision in his left eye and we were told that he would have only about 50% of it when he was recovered--  but he not only gained it ALL back but his vision was improved to the point of not wearing his glasses anymore!). So his dad told him to sit down til it past. Not too sure how long this was for (they got home after 10pm and dennis was up late this morning and didnt get the chance to share the story yet). I asked if he hit his head at all or if anything happened at school that could account for this and sam said 'no'... My first reaction was a racing heart and stomach dropping and my mind raced that i should get him in to see the Dr. today... then I took a deep breath and told him that we need to remember to tell the Dr. of this at our next appt (in about 2 weeks). So I have made a note on Alice (my iPod) to be sure to let the doctor know about it (and i will interogate my husband tonight and get more of the story).
This upcoming Monday is our first visit to the TBI group support meeting in Brandon. To be honest I am nervous. I am scared that it will create an anxiety in Sam, or he will find things that others say there and use them to 'play us' (cuz lets be honest and not forget-- he is a teenager!☺) or that things that people will say may scare him and give him cause to worry. I have been praying for Sam and has really noticed changes in him. He is resting more, he is more open to talking to me about how things are going in his day and in his head (for the most part). I still havent spoken to the school yet (I have been away for 2 field trips inbetween having some lovely stomach bug... and Josh had the bug...)  So Monday morning I will call and speak to the Vice Principal and talk with her. Mostly just to check in that things are going as sam says they are for him at school.
I have been trying to get more awareness our there too about TBI. There is a serious lack of support and counselling for not only the survivor  but for the family too -- well in our area at least. (this group that we are going to with Sam is more for adults but we are taking him anyway since the last time we were there -- for my dad-- there was a young girl there with a TBI.)
Again I seem to be scattered with my brain and my thots ... will I ever be able to string together a logical post again? I sometimes kid Sam that I have a TBI too from being so close with him... ☺