No one is to blame .... except for maybe me.... again...

 or so it seems... and feels....

this past week was a doozy again! I seriously thought we were done with BI issues and all that goes with it... but again I was wrong.

at least I think I am wrong... but then again ...



- we were blindsided last weekend by our farm shop door (one of the big ones that you drive a tractor through) wide open Saturday morning before we head out to volleyball tournament -- dirt bike hauled to door and tools out...



This was followed by a missing quad (the only quad we had running for Dennis to do chores with) when we returned home from a volleyball tournament

    -not so pleasantly surprised to find it 'borrowed'

    -and even less surprised to find it returned broke down ...

We knew once we saw it was missing who had it and we were seriously not surprised to have it returned in less than running condition. Sometimes things like checking the oil and other daily maintenance things go forgotten about. There was also a severely sprained ankle from a few days earlier, an epileptologist appointment that was to be in the coming week (that was missed)

Dennis had spoken to Sam early on Saturday (about the shop door incident) and there was no request to borrow the quad (which would have been no as it had been asked the day before -- this is because we are down to one quad for Dennis to use to move cattle and fences daily).

To say the least we were a bit upset and rightly so we figure.

Apparently we were wrong...

Sam is not talking to us

He has 'unfriended' his siblings on FB (Dennis and I are no longer on FB)

He removed himself from our family  group chats on messenger

He plans on moving out

and he is done with us (his words to me on Sunday last week) and "all the BS around here"

His attitude and demeanour is very much like when he was on his seizure medications. (Which he is not now); like he is bound and determined to make life miserable for everyone because he is miserable, upset, fed up, disappointed or whatever...



He will not say what brought this on.
 I am at a loss... my heart hurts
I am on the verge of tears all the time. I spent copious amounts of time praying to God and talking with Him, handing all my worries and fears back to Him when I try to take them back. I know worrying does nothing so that is my daily... hourly ... even every minute goal...



I send Sam texts asking him to come for tea or just to say hi basically and most are met with nothing or no and what makes it hurt so much more was it wasn't that long ago he sent me a beautiful message that brought me to tears:


and now this ....
I am just so tired....

I know part of this is his BI and all the lies he has been telling himself and others are now the resounding truth in his head

but I am tired....

I am tired of always being the 'wrong' one, the one to blame, the one who is the emotional punching bag for people...

and I am mad an hurt....

why is it that he can't see that we are the only ones that are ALWAYS here for him and love him unconditionally ... and yet it is ok to treat us like crap and hold his friends up to be the ones where are 'always' there?!?

why does he feel the need to shut out his siblings who only want whats best for him!?! they didn't do anything -- but because he feels the need to post his life on FB he feels that they will report back to us what he is doing!

I am exhausted

I sleep little

I hear every noise in the house at night again

I am trying to keep busy with whatever I can to keep my mind from wandering to why!?

WHY!?



why the heck do I let him do this to me...



because I love him and want to see him succeed in life.



He is my 'Sammi' and I miss him terribly....

You can look at the menu, but you just can't eat
You can feel the cushion, but you can't have a seat
You can dip your foot in the pool, but you can't have a swim
You can feel the punishment, but you can't commit the sin

And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame
You can build a mansion, but you just can't live in it
You're the fastest runner but you're not allowed to win
Some break the rules, and let you cut the cost
The insecurity is the thing that won't get lost

And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame

You can see the summit but you can't reach it
It's the last piece of the puzzle but you just can't make it fit
Doctor says you're cured but you still feel the pain
Aspirations in the clouds but your hopes go down the drain

And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame

No one ever is to blame
No one ever is to blame

~~ Howard Jones~~

Prayers NEEDED!

Please pray for our Sam today as he is struggling .... majorly .... big time struggling with life!

He has had a very rough learning curve week and that has seemed to really mess with his head. We had a good day this week working with him on the farm (even after a serious issue arose just the night before) and then this morning I asked for him to please leave his phone alone until 8 -- just as Isaac and Hannah have to leave their ipod alone until this time too (explaining yet again how it is not fair and confusing for them when he sits around texting doing nothing... {and he should be getting ready to start his day with us on the farm) and they are busy getting ready for their day.) The rule of no iPods/iphones in the bedrooms still applies to all kids no matter their age and living in our home.

He replied 'ya' and as we continued on with our morning, he took the phone to his room (in the basement) and we tried to talk to him again... and we were met with He is moving out then.  (we think he is having a serious braininjury moment right now where his brain is telling him that the sky is green, the grass is blue and up is down and down is up....)

Now, we have been working with him to get him moved out to one of our farm homes for the first of May  ....  this is about 20 days away. He will only have to pay utilities and we are helping to get the house ready for him, giving him furniture, a car, etc. I have told him to make a list of groceries he thinks he will need to get started with and I will go shopping with him and pay for the groceries ...

His attitude this morning is he is tired of living here and wants out.

The earlier issue that happened this week will be a big obstacle once he does move out -- and I have tried to point out the good reasoning to moving into town (closer to work -- 10 mins so less $$ for gas), less time spent driving when he is tired and fatiguing, closer to activities that he enjoys, no worries to bad weather and driving.... etc etc.

I feel like he has a 'friend' and his mom working on his head. They have asked him to move in with them a few times he says, yet then in the next breath he tells us how they are really struggling financially. He says she will drive him to work (even farther then what he will drive if he lives in the other house -- and we pointed out that that would be a 4X gas bill for him... at possibly $1.30/L) I dont see why another parent would step in with these kinds of offers when they KNOW what we are doing already for him and then I question what has HE been telling them about here that would cause them to make the offer. (and not possibly ask us about it ....) I am at my witts end... I am sick with a cold or chest infection, I am tired, I am mentally exhausted and I am in desperate need of a good crying jag....

Please pray for Sam today. I am struggling to not sit and worry and cry and worry and cry some more. I am trying very hard to hand this to God and let Him do what He does... but then my mama brain kicks in and ... well, you know what happens.

I am about due...

It has taken me over a week to write this post and actually post it ...

I have been debating with myself again (as I am prone to do alot in this journey apparently) of whether I should post our new 'goings ons' or just leave it and hope that things change and get better...
I have wrote postings in my head a thousand times while driving my van, walking outside, washing dishes, laying in bed trying to sleep... (for the record those postings all sounded so interesting and so 'together', even eloquent, in my head -- nothing at all like I am sure this one will sound) but in the end I have always brushed them off and thought that it was not worth the time to pour out my thoughts and possibly shed the tears that sit behind my eyes ... again... lately. This is a post that I am scaed to actually publish because of the many 'nay sayers' (for lack of a better word) that have brushed off my concerns and worries with "oh that is just a normal teen/man thing -- dont worry he will grow out of it". People who do not know what it is to live with a survivor of a brain injury. People who do not know what it is to see the change but the rest of the world (this includes family and friends) does not. People who do not deal with the day to day issues that face not just a survivor but thier caregivers too. People who probably mean well but

Our Sam finished his grade 12 year in January and is now a high school Graduate!!! YAY!!! I am so proud of him for sticking it out and doing what he set out to do 5 years ago after his accident! His marks were for the most part ok some not so much but enough to pass.
Sam also turned 18 in December...

Enter the hormones, the know it all attitude, the "I am 18 and you can't stop me/tell me/make me's". Add to this his BI and the text book responses he is having to life and issues that pop up. I know if you dont life with a survivor you wouldnt know about some of these issues and you might be tempted (notice I said might be tempted to say to me or other caregivers) to say "oh that is just a teenager/man/husband thing that is so normal!"

Sam has a addiction I believe to his phone... ok that is normal teen behaviour. He also seems to be really addicted to texting
 (using his phone and apps on his phone) people he doesnt know. He sends pictures and I am prety sure he is sexting. Now that wouldnt be a big deal to some but when you see how it takes over his life you would be concerned. He never puts his phone down and charges it multiple times a day. We have asked him to be respectful of our rules but we get nothing from him but "yep ok" and then no action. He will rush to get work done (and not do it properly or at all!) so that he can get back to his phone. He doesn't pay attention to what is being said unless you make a point of forcing him to listen and repeat it back. I am seriously worried!

The past week or more he has asked for advice and when it is given to him he doesnt take it and actually does the complete opposite. He is planning  to move out in May to one of our homes but he doesnt seem to have the motivation to get the house ready (some minor mudding has been done - and there is some major cleaning needing to be done and a bit of painting now that he has mudded). He sits on his phone. He needs to save his money so he can  move out! ("rent" - which is really just the utilities -- and  groceries will be needed) but he doesnt save he spends, spends, spends the little bit of money he makes from his (at the moment)part time job. He will be starting a full time job in 2 weeks and that is going to be a whole new learning curve for him as it will be for a farmer-- so long hours (he is not used to and I am sure he hasnt explained his BI to the employer) -- enter his fatiguing, lost of equipment operating (enter NO CELL phone/texting) PLUS there is about a 45 minute drive to and from work! It will be 'interesting' (aka nerve wracking)!

Grandpa was going to give Sam 2 bred sows to raise to sell the piglets and we were all for it except Sam didnt save any money for the feed and has done nothing to get ready for these pigs. We bought all his feed last year for his pigs and we did a big part of his chores with them too and he got all the money for them... not a problem. BUT we told him to save some money for this years feed and to get set up for them and he has done nothing! We will be very short handed this summer on our own farm with work and wont have time to be running up to his place to look after his livestock and buying his feed! He is a bit pissed at us for this but what are we to do? He doesnt seem to get that once he is working for this new farmer he is not going to have the time or energy to look after more things than himself! We have tried to explain to him to try to enjoy being out on his own first. It will be a huge adjustment.  And still somehow we are the big jerks in this! We are not supporting him! We are not letting him live his life! And yet he doesnt see what can afford to keep our own farm business running AND support his!

He also seems to think that for whatever reason he has no responsiblity to us here on the farm when he is not working (4 hours a day a few times a week right now). We gave him a car (which will be transferred to his name when he moves out and we will pay a year of insurance for him), we give him a house to live in now (and in the near future!) we ask him to help with a few things and it is like pulling teeth! I know that is most teens but once they are done school you would think they would want to do whatever is necessary to get out on their own!?

Sam has also taken to drinking -- I am not sure to what degree but it scares me from the way he talks to his friends about what and how he will be drinking! He doesnt eat (he has lost a substantial amount of weight again), he rarely drinks water and his sleeping has been irratic again.  We are not so naive to think he wont ever drink -- we drink and allow the kids to drink in moderation here at home with us -- but he is setting himself up for the perfect storm... His driving has scared his brother with the speed and lack of concern for the passengers.


I am just so tired of fighting about everything with Sam about  what is said or done these days! I am struggling with my depression again and find it exhausting to hide it from everyone-- which I am sure I am failing at too.  I feel like a bad mom for wanting him to get out on his own so he can see what we are trying to do for him... I am so tired of always being the 'bad guy', the 'bitchy' one, the one who is there no matter what but always gets shit on...

I'm about due....

sometimes I just feel like ....

Maybe it is more of a pity party thing but sometimes it is just a plain and simple I am exhausted from it all.
I am tired of advocating
I am tired of phoning, emailing, reaching out to others only to be let down and ignored (well that is how it feels to me anyhow)
I am tired of watching out for everyone
I am tired of not having others to confide in about everything that is happening
I am tired of feeling so alone even in a house full of people


I have been working hard on getting stuff out there and trying to get some people to listen and possibly help me in some way.... but so far I have had a butt load of people tell me to send them emails with our story and pics of what I am doing and trying to do. I have had them tell me they will get back to me via emails, phone calls, meetings etc. and so far no one has. It is very discouraging and I am seriously tired. I didnt start this part of our life so that I could waste precious time with the rest of my family and friends to be treated like a nobody -- and that is how I feel. I have others emailing me wanting things that cost money that we dont have. I have people emailing me asking me to do more for THEIR cause but no help in return. I have learned to not share any information about the emails and calls I get... but then there is stress built up as I am the only one to deal with it all...

The past few years I have been very busy from Jan to June trying to spread awareness and help educating the public about brain injury awareness. This time has taken a toll on my family  and I wonder if it will be worth it in the long run.
Dennis wants me to focus on one area of awareness- which I have been trying to do. My dad doesnt seem to know or care one way or another and Sam I think would honestly just like me to stop altogether.

I did not start with helping educate the public about brain injury for fame and fortune... I did it in hopes of bringing awareness to the public so that if someone finds themselves in the same spot I was in (with my dad, Dennis and Sam) that they would A. not feel so alone B. know that there is hope C. maybe have a bit of an idea where to start when it comes to looking for help or support

Have I bitten off more than I can chew?

Is it time to throw in the towel and admit defeat?

Maybe the time has come to walk away and let someone else take over?  

I dont know what to do anymore....

this is not that post...

this is my motto these days...

Soon I am hoping to write a post that is more cheery and upbeat and filled with rainbows and unicorns... but this is not that post.

One day I will write a post that says someone is actually listening to me and believes what not only myself but the rest of the family  and his teachers at school sees...
but this is not that post.

There will come a day where I can say that I fully trust and have faith in our doctors...
but this is not that post.

Ever since Sam has been diagnosed with seizures we have dealt with so much that we are exhausted. Looking back over my posts from last summer/fall and reading how once Sam was on these lovely seizure medications how he has slipped further and further from us. His moods are severe and extreme, his tiredness is NOT typical teen behaviour, he doesn't eat yet is gaining weight, he doesnt exercise as he has no energy most days to get up the stairs to go to bed!

There have been days of violence towards siblings, verbal abuse towards siblings and Dennis and I, running away episodes, depressed days where we were scared to leave him alone... not pretty days to say the least. This last week has been one of those kind of weeks...
Monday he left school in fine moods, nothing happened on the bus (so we are told), the kids all came home, had a quick talk with me about what needs to be done for chores in the barn, and away they went ...
10 minutes later I recieved a text from Josh that Sam and Isaac were fighting and I was needed. Out I went to help. They were not fighting anymore and when I asked what was going on, Sam  proceeded to punch Ike in the chest and then the two of them counldnt really say what started it all. Then Sam suddenly walked away to the house where he packed a bag and was leaving.

No one understands him, we dont 'get' anything and he was outta here. We tried reasoning with him, telling him that if he was determined to leave he needed to call CFS and let them know he wants out. He yelled about it all and left ...
again
no meds, no wallet with ID, no medic alert bracelet (his broke last week and we are waiting for a new one), he doesnt have a cell phone, no money, no clothes.... nothing
so off he went and since we didnt know what to do anymore we called CFS and they directed us to call the RCMP. They said they could do nothing for us unless we want to report he was a danger to himself "so just follow him and keep him safe"
... so that is what we did. We were able to get him to talk to us for a few minutes in the van to learn
 his plan was to walk to Alberta to see a girl he met 2-3 years ago at cadet camp that he has been talking with on the phone for the last few months.  Then he got verbally abusive to me again and I told him to leave the van and we would continue to follow him.
 He got out and turned for home.

I am sorry but if this is typical teen behaviour then every other teen I have worked with are not 'normal'.
I did more research about the med Keppra he is on and this is what I found: (what Sam experiences are all in bold red)

KEPPRA

Common Side Effects

• sleepiness
• loss of strength and energy
• dizziness
• anxiety
• nervousness
• irritability
• other mood changes

Serious Side Effects

• decreased ability to cope with daily life events
• depression
• thoughts of suicide
• severe anxiety, agitation, or confused thought

VAL PROIC ACID

Common Side Effects

• tiredness (sometimes with slower thinking)
• dizziness
• upset stomach
• vomiting
• tremor (shaking of the hands or other parts of the body
• hair loss
• weight gain
• changes in behavior (depression in adults, irritability in children)

Serious Side Effects

• weakness, sluggishness, swelling of the face, loss of appetite, vomiting, or yellowish eyes or skin, especially in a child under 2 years of age (possible liver failure)
• pain in the abdomen, upset stomach, vomiting, or loss of appetite (possible disease of the pancreas)
• easy bruising, nosebleed, or other abnormal bleeding (problems with clotting)

I just wonder how many side effects does a person have to exhibit before they will look seriously at possibly changing the meds?! Sam has experienced all of this since the beginning of the seizure meds and now it is becoming increasingly worse.

Dennis apoke with Dr. A (neuro)  yesterday and explained everything to him and next week Sam will be starting to be removed from Keppra and on to CLOBAZAM for 6 months and then they will put him on Mylosine after that. So we can expect seizures and Sam is not to go for his learners permit (not a major thing right now) so we will see how that goes.

I also spoke with our family doc yesterday (Dr.T) and he says it is a combo of 4 things: teen years, meds, head injury and me...

yes me... I am caring too much and I need him to be a kid... no kidding!? really!? I am to let him go out and be a teen!? who knew!?  Sam has a busy social life! He is busy with cadets and does things with friends, visits with family (cousins and grandparents etc). He doesnt go out and party or even go to the movies too often but that is because it is a $$ issue and a distance thing! We have 4 kids to support and run after, sometimes there is no money to hand out so they can have everything they want. We encourage all our kids to get out and go hang with friends, but they choose not too some days so do we force them?!

I am so tired of people and doctors telling me that I need let him be a teen -- WTF do they think we are doing!? It is hard to get him to go to a friends house if they dont invite him or they dont except invites to our house. how do others know what happens in our house? do others know that we try to get the boys to go out but they choose not too.

It is one of those damned if I do and damned if I dont things again. The doctors (and other helpful people) tell us to do things, so we do it, then we are wrong or they ignore what we say is happening. Or if we let Sam be a teen and something happens it is "why did you not do this" (because you told us not too) or "why did you do this" (because you told us too) or if we GASP try to do it another (aka- think for ourselves) we get "what!?" 

I agree with my friend Marianne who says that the doctors are just 'practicing" medicine... but i beleive they need to 'practice' listening to the patient and caregivers just as much (and as fast) as they are ready to prescribe drugs....

so not a good day...

It sure feels lately like we have ben having more ‘off’ days than ‘on’... and not just with Sam. 

Everyone seems to be out of sorts or just not themselves... and I for one am exhausted. 

Between the medicine side effects and the brain injuries causing issues to teen drama and ‘relationships’  to medical problems am ready to jump ship and head for shore.

Yesterday I took Isaac to have his hearing tested and it seems that (by the test results anyway) his hearing is that of a 90yr old man in one ear. 

Isaac is 14... this is not good.

We are going to be going to another audiologist and according to the man we spoke to yesterday, he assumes it will be sooner rather than later due to his age and the test results. So off we will go to more appointments with specialists.

Sam has been forgetting meds,  missing classes at school (and not while he has been at home) and then this morning when we called him on staying up late texting on his iPod (which is NOT supposed to be in his room at night) he decided to go back to bed this morning and then miss school some more. He says we treat him like a child and when we give him the chance to act mature, he drops the ball and blames us. We are on a vicious treadmill right now with his attitudes. We are basically damned if we do and damned if we don’t. We make rule changes and he agrees with them, he makes new rules and we agree to them, then he does whatever he wants. 

typical teen behaviour.... ya ya ya

I know... but there is a pattern to this behaviour. Sam gets tired and he forgets his meds. He forgets his meds and he cops an attitude. We remind him to take his meds we are treating him like a child. We remind him of the doctors suggestions and we are babying him. We DON’T remind him, we don’t care. We give him an iPod to use with alarms to remind him to take meds, exercise, do things for himself... he turns the volume off and uses it only to texts, email and do other things. He texts inappropriate things to people, he is up all hours of the night .... which comes back around to being tired, missing meds, getting grouchy and irritable -- this results in missed school and classes, falling behind and taking a full year to do courses that should only take 1/2 a yr. 

He claims he wants to go to ‘regular’ classes which would be fine, except he has dropped the ball on this, where he could have proven to the school and teachers that he was ready for full regular classes (by going to every class, working diligently, getting his work done and staying caught up) he chose to fight it and skip classes, not hand in work, take his time with assignments the school will mostly likely say no to his request -- as he has not proven that he is able to handle regular classes. 

Which will bring us back around to being treated like a child, missing classes, etc, etc, etc... tiredness, skipped meds, etc, etc ... which will inevitably bring us to another day (if we are lucky only one!) where he has had enough of it all (as his brain convinces him that we are all against him and trying to keep him here) and want to go. 

go anywhere

anywhere but here...

There is drama also with Josh and his gf... I cant even get into that...

I am so emotionally drained right now after this morning with kids then I get a phone call from someone in Dauphin where we thot we might be able to get some psychological and emotional help for Sam. We were told that Dauphin is not the place for us and I was given a few other numbers to try.  I am so tired of everyone passing us onto someone else. There MUST be somewhere for us to go with these issues! 


I am looking into a neuro feedback program for Sam-- but it is in Edmonton, it is costly and if he is not onboard... why bother!? To be honest I am scared to call in case I do and they say "there is nothing we can do for him here either". I am jsut trying to find somewhere for him to get help with his brain injury! Why is this so damn hard!? Good grief!  

How many phone calls do I have to make? How many people do I have to tell our story too and relive July 28, 2008 every damn time!? Then explain about Josh...and Isaac & Hannah!? I have to laugh when they say (cuz they all do) “and what about YOU Jodi!?” 

I want to say “WHAT about me!?” If I could get doctors to listen to me and get Sam some proper help maybe.... just MAYBE I COULD find time for me!

so not a good day today...

you do the math...

TV+video games+food (until 10pm) a large Fruitopia÷The 3 Musketeers (the new movie)×2 episodes of GLEE- less than 3 hours of sleep= an all almost nighter for Sam and I 

Tuesday evening we arrived in WInnipeg so we were bright eyed and bushy tailed for our first appointment on Wednesday morning at 9.00am with out new neurologist ....erm... no EPILEPTOLOGIST... Dr.A,. It was a very through appointment that lasted almost 2 hours! We got a few answers we have been waiting a while for. 

The main one....

 SAM SHOULD BE BLE TO PLAY FOOTBALL!!!!! WOOT! AND we are still in football season since the boys won our last game, so we are in the finals now! We have a game on Sunday and it looks like he will be playing!!  Dr.A said he was going to check with Dr.Y as to what his reasons were for telling Sam “no” but he also said “Sam is a kid and let him be one!”  I was almost crying when he said that... those are the words we have been saying since April and everything has been being taken away from him!

So we went to the neuro appt, then after lunch Sam had his neuropsych appt. with E. and that was 2-2.5 hours long. We got back to the Ronald McDonald House at about 4.30, so we ate and veg’d for a bit. Then my cell rang...

“I am looking for Sam Ginter’s mom...??” 

It wasDr.A. He was able to book Sam for an EEG for Thursday morning -- BUT he was to be ‘stressed’ so that meant a long night for us. Sam was not to sleep longer than 4 hours. Now for most teens this would be a fabulous opportunity to stay up...but we are early risers in our house (Wednesday we were up before 6am) so to stay up to midnight is a challenge! But we did it! Sam and I watched some GLEE on the computer, he played a bit of video games, then at we hit SIlverCity for a 10.30pm The 3 Musketeers movie, followed by coming back to ‘the house’. By this time both of us had gotten our second wind and were not tired so we settled in to watch more GLEE. Finally at 1.45 I turned everything off and we both went to bed... only to wake up at 4am... 

Sam will be ‘stressed’ for todays EEG but he will also be the same for his neuropsych  cognitive testings today. 

*********************************************************************

It is now 2.30 and the EEG is done and went well. He slept thru it all and woke up as the tech was removing the ‘electrodes’. We walked back to the house and he slept for about 2 hours and then had lunch.  We have walked back to the hospital and now we are waiting to see E. 

Sam is very very VERY tired. He is extremely shakey today -- I am sure most of it is down to lack of sleep but we will have to watch and see if it is because he is taking 2 val proics in the am now and nothing at 2pm.

*********************************************************************

We had to forget about doing any cognitive assesments today. Sam was just too tired and out of it. He was glassy eyed and very slow to talk or react. So he will finish what he can tomorrow from 11.15 to 2.30-3.00, then we will head home. 

For the rest of this night Sam is taking it easy and I am trying to get him to stay up til at least 7.30 so he can sleep thru til morning.... 

I wish I could sleep til 7.30, but sadly I will be up and packing things so we can get home! **Sigh** sometimes it sucks to be the parent...