The best place to end ...

 It has been an emotional rollercoaster the last 12 years and this I believe will be one of my, if not THE, last post here about Sammi! Thank you so much for all the love, prayers, shoulders to cry on and just listening to my rants and raves for 12 (good grief TWELVE!!) years. it just hit me that our Sammi was 12 when this happened and he is now 24, so I have been writing about our journey with brain injury for half of our sons life. what a perfect way to come full circle and end this part of his story here! 

Our Sam was in the Adult and Teen Challenge  (ATC) Program for a year, where he worked hard to overcome his addictions and build a new relationship with our Lord! It was a hard fought year at times and it was never boring! We not only got to see our son grow and flourish, we grew our own hearts as we met and added many more to our family!  we got to know and become family to so many of the students in the program (both the mens centre and the women's in Brandon). We made wonderful friends with some of the staff at ATC. 

As Sam got closer to finishing the program he had many moments of reflection and 'this is how its going to go' moments ... BUT GOD... and when God steps in to clear your thoughts, step back! 

Sam lived with us for a while once he got out of the program (he finished in April), he found an amazing job in Crystal City - welding even! And looked for a place there and eventually found one nearby his job! He works for a godly company that isn't scared to say it or show it! And we all couldn't be happier about it! Shortly after Sam started he wound up with 6 weeks off after a double hernia surgery - and since Dennis and I were moved into our motorhome already we moved to Crystal City (where Sam was living in  his brothers camper trailer) to help him during his recovery. 

During his time with this company, Samuel made the decision to follow Jesus and be baptized, so here is where I will leave the blog - beginning with what we called Samuels second birthday, since we got to se him relearn how to do everything all over again to his new BIRTHday and new life with Christ! His baptism, where all he needs to learn and do now is to trust, obey and follow His Saviour! 

Thank You Abba for being a Father who cares about ALL the things in our lives; the big, the small, the pretty, the ugly, the ups and downs... ALL of the things! Thank You Papa for being faithful to follow this tragedy to rejoicing, to go from despair to joy, from broken to healed ...Thank You. Thank You. Thank You. I know there are still miles to go but he is now going those miles with You. I pray he will continue on this road with You, Jesus, and as he shares his story, I pray that it is ONLY YOU that people see in his miracles! And that they rejoice.

Thank You Father. For it all, because I had to lean and rely on You as well and I know I could have done a better job at that and so many other things, but without You it would have been an even wilder ride I am sure. Its all because of You. Al this I pray and rejoice and praise in YOUR name! Amen

 Sammi's testimony!                                 

 Sammi's baptism!

I will continue post as I will about my daddy. He is still in the care home and our visits are few and far between right now due to covid and changing rules it seems all the time! My concern with him is what he actually retains mentally. Does he realize I am not there as much? As Dennis and I prepare to for our 6 months in Mexico with YWAM will he notice I am not there? He is getting more and more quiet when we see him, he aspirates more and more too it seems (which is "normal" for him). 

If you are interested in following Dennis and I on our God adventure to Mazatlan Mexico with YWAM (Youth with a Mission) you can check out our new blog/website at God, the Ginters and You  and you can subscribe to updates there too! 

Thank you for being a part of this great journey of Brain Injury with me, Sam, my Daddy and the rest of our family! We truly did and do appreciate it all! 

Until next time...

last week ...

last week daddy had been sick. I ad gotten a phone call from the care home saying he had a very high fever and they assumed he had aspirated which was the cause it not only the fever but the raspy, rattling chest noise. Each time he gets sick I am preparing myself for the end of this journey that we have been on with him for the last 24 years. I pray that his pain and discomfort are slight and that if it be ...it is quick, for all involved (dad, the care home aides that work with him and us... me). It is an exhausting time when he is sick, because I feel such pressure being the only one to do anything with him. I don't call any family.. they all live far away and only one (my aunt - daddy youngest sister) that keeps in contact with me. so it sits with me. I wrote this last week while sitting ... once again, with daddy. 

He is better now (or at least he has had no fever) and the next few days again will tell if he is actually "better better" or if there will be another round of meds, if the chest has cleared... until the next time he aspirates or an illness goes through the care home.

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

Once again I am sitting here listening to your breathing, so rough and ragged… your bed humming from the weight of you on the mattress, a Frank Sinatra movie on the tv and the day to day noises of the care home. Your spirits are a bit higher than they have been other times but you are still sick.

Yesterday afternoon I had a call from the care home that you were not well. You had a high temperature and your breathing was raspy. They think you possibly aspirated so there was a call to the doctor and medications ordered as well as the nebulizer. So we wait to see what the meds will do. And this morning when  I got here to hear your fever was down and you ate a bit at breakfast, so we sat, I read the bible to you, I prayed for you and I sat and we watched an old Dean Stockwell movie and you look so frail and tired.

Now it is afternoon and you are back to bed (you look exhausted). I tried to get you to sing a bit (something that you love to do) and you didn’t want to. You said you wanted to sleep for a while. 

So here I sit…

listening… 

praying...

remembering...

Reminiscing in my head. Thinking of all the times we were riding in the semi’s, eating at McDonald’s (and me ordering those extra thick chocolate milkshakes that you hated to hear me try to suck up!), the songs we would sing, the driving lessons, the shopping mall adventures, the laughing over the burnt pudding and fish cakes. 

My memories are all so vivd, and yet the one thing I cannot remember for the life of me is your voice. 

I cant hear your laughter and calling me “jo”… I wish I could. I would love to hear you roll over and say to me right now “Jo, lets sing some Merle Haggard.” Or  “lets go for a drive and see what we can find.” I can't hear you and haven't been able to for years and I miss that.  I can't wait until we are in heaven and we can talk... two sided conversations! 

I love you, daddy... 

I miss you...

still a work in progress (as always)

this week (well more the last few weeks) have been ones of working towards my own healing.

December will be upon us tomorrow and I am still after 22years a mess this time of year. Crying at stupid Christmas songs, weepy when I think of setting up the tree, basically non-energetic about anything Christmas-y.

BUT...

I have started a new wellness regime that will hopefully be something that will get my hormones straight, get my ass moving more and most of all work out the issues in my head.

My bi-polar has been the worse it ever has been in the past 18-24 months. Yes, bi-polar... what an ugly word, makes me think of all sorts of negativity (but then again is there much positive about it??) I have discovered that now that I am in (yet another) new phase of my life... empty nesting... that our life with kids was a huge buffer for me. When those lovely voices started speaking in my head, I could keep them at bay and silenced with the noise of babies, kids and teenagers. Now that they are gone from the home, I find that I have them not even having to yell these days - their whispering is loud and clear ... and scary.
I am not writing this to freak anyone out but to clear my thoughts and put them down and sort them out!

I wrote the above a few weeks ago and walked away... now I am back to try this again... please bear with me...

I have enlisted some very dear sisters to pray for me and these new supplements and so far have noticed some small changes. I am sleeping better, I am not so weepy all the time, I find I am able to focus a bit better on the positive things. So almost a month in and I am going to remain on it for a while more.

Yesterday was a hard day though. We had a care meeting at the PCH for my dad. There are some new changed to final care in our health region and we (more like I) had ate look at it and make changes to his directives. Daddy has always been on DNR  -- right from the beginning, and it has remained so for 24years , but there was a small change that was made yesterday. Not necessarily the best time for me to make this decision with it being a hard time of year as it is....
Also I had met with some of the staff and daddy's doctor about changing his food from puree to mince. So he can be engaged with his eating and possibly less aspiration.  Yesterday we tried to find a happy medium with the speech pathologist, the dietician, the doctor and a few others on the care team.
It was a hard meeting for me in a few ways, first, I had to explain my reasons (which makes sense) for wanting them to make these changes and secondly I had to do it without having a stupid melt down... which I failed at... miserably. I felt like an idiot... I felt a full on, true failure at looking after my dad. I felt like I had dropped balls on so many things and most of them weren’t even ones I knew I was supposed to juggle, that issues that I assumed was being cared for were not and how dare I not know it.
I felt like some of the team was looking at me like I was heartless because I was asking for them to look at his quality of life and not just as a body in a chair that had to eat to stay alive - this is not something I say lightly because in 24 years I have had many, many things said to me out how and why I care for my dad. I have actually had people tell me that I was selfish, heartless or ignorant to have him on DNR, to sometimes wish he had have let go,after the beating so that he would have left and not had to,suffer as he does daily... and so that my memories of him could have been of who he was before my world crashed in on me and have the memories I now have...

I tried to explain that I know daddy would rather be eating food that even slightly resembles food not mush. But the one care worker, kept coming back to how he could choke and aspirate and it would be so traumatic for dad -- which I get but I want his days to be ones that if he is able to comprehend things that he knows he is being treated and respected as the awesome man he was, only I knew as we all sat around that table.
I am so thankful that Dennis was with me because he was able to ask what I was not able too because I was so damn emotional. He asked if there was anything.... ANYTHING ... we can do that can give him a better quality of eating?  I think it was then that the one realized that I was not asking for full time meal changes... just something to give him something to look forward too. It was decided that the home will give him his lunch as mince and his other meals as puree, so that he will always have the chance to eat a full supper if he gets too tired to chew the mince (until he can try to build up the muscles in his jaw)
But it kept being explained how it will look if he starts to choke and what that could entail long term... I wanted to honestly just say YES! I get it!! But lets stop always focusing on "what could' happen and look at what dad may possibly gain from this change!
I was very thankful as well with the social worker who was working hard advocating for daddy and his doctor - who kept saying that he totally gets us looking at his total life quality.
I refrained for saying a lot of negative things (yay me), but it is also so hard with on my mental health to not be able to say what I need to say.

Which brings me back to my circle of sisters that are praying for me. I have tried so hard to be honest and open about my feelings with people but there are just somethings that I still struggle to answer and to ask for prayer for without a full explanation (and possible meltdown)... I am still a work in progress and I am seriously trying to fully rely on God and His promises of mercy, grace and love. I do know that without my prayer sisters and my church family (even though most of them know NOTHING about any of this!)I can't even imagine where I would be. God is good, all the time...

A question that Dennis asked me yesterday was one that I thought I had the answer to, but realize it don't: what is God waiting me to learn from caring for my daddy and going through all that we have gone through and are continually seeming to go through. So if anyone could give me a heads up on this answer (is it possible for God to give someone an answer to someone else question or lesson?)

maybe this is my epiphany...

but then again, how can it be an epiphany if I have always known it?


So daddy is still sick. Not getting and worse and yet not any better either...
On Saturday the care home sent him up to the hospital to see a doctor and he was admitted and will be there for a few days. The medical staff at both the hospital and the care home are all confused as to why he is on medication, starts to get better then gets sick again. So now he is in the hospital and is getting his medication via IV.
The resident that saw him last night said (after looking at his file) his pneumonia would start to get better in his right lung then his left would get it; then as it got better it would go into his right lung. Totally not making sense. So th hope is that the IV meds will work and wipe it out.
Dennis and I were with him yesterday at the hospital until they got him settled in and the IV inserted - so we could help keep daddy calm-ish and he was ready to go to sleep. Then I arrived this morning and spent a good part of the day with him. He was white, unusually quiet and didn’t eat much... but he DID eat. The nurses suggested to get dad’s chair sent to the hospital so we got it and had him sitting up in it for a few hours in hopes of breaking the chest issues. Time will tell.

I have really been struggling with this bout of sickness with Daddy. He looks so tired and so small. He weighs almost nothing 60.2kg (about 132lbs)and he is 6’2”. He is literally a rack of bones. My daddy was always really thin but not like this. His appetite has decreased so much of late and he is wasting away before my eyes. He doesn’t talk a whole lot but he will sing bits and pieces of old songs that he loved — but only if he is in the right mood it seems. Today was not one of those moods or days. My prayer has been {and always has been} that if it is God’s will to take Daddy home, I can live with that. But there is enormous guilt that has gone along with that prayer. I have had friends tell me to “enjoy every minute with him while I have him.” “Don’t be so selfish to pray like that.” And other things, but I know my dad didn’t want to live like this. He told me about a year and a half before this happened, what i was to do and what he wanted and didn’t want - but that doesn’t stop the guilt.
Then this morningI was spreading my bible and God led me to a devotion by Carol L. Baldwin called “Trust and Confidence” I was based on Matthew 26:39

Going a little farther, he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” 

It made me think that maybe I am looking at this all wrong. Maybe I am to be rejoicing  in this trial with Daddy and his entire injury (not just the pneumonia) Maybe He is granting me time to appreciate again what I have in the Daddy I have left now... and not mourn the man I lost 22 years ago.
the further readings I read were:
1Peter 1:6-7
6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.


1Peter 4:12-13
12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. 13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Not so much that I am ‘suffering’ for being a Christian but in that I need to learn to lean on Him and trust in Him way more than I do. When I look back on the things we have gone through since daddy's accident in 1996 -- right up to recently -- I can see when times that I had viewed as challenges {or even negative issues} occurred actually really helped me in a time later o down the line. Now I have known this and think about it quite frequently of how maybe Daddy 'accident' {choices really} really an truly helped me to get through everything we have gone through with our Sammi. I don't know how I would have even began to grasp the enormity of Sam's accident if I hadn't have had my experiences with Daddy first.

So I will continue to pray for God's will through it all. And try to focus on Him and what I am supposed to be taking away format or learning from it! A daily reminder of this will be in my heart, in my mind and on my fridge:

Trust in the Lord with all your heart

    and lean not on your own understanding;

 

in all your ways submit to him,

    and he will make your paths straight

Proverbs 3:5-6NIV

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~~

there ain't no easy button...

I wish everyone knew more about Brain Injuries...

I wish people would take time to learn about not just Brain Injuries but the person behind the injury was well...

I wish people wouldn't be so quick to find the easy button to "fix" Brain Injuries...

I wish that there WAS an "easy button" ...

..... oh how i wish there was an easy button....

As i write this we have had a crazy month or so (who am I kidding... its been a crazy 7+years!) with Sam. He moved out and got a 'real job' -- he is no longer on the farm and he rented a room on the second floor of a house about 40minutes away. 

He loves his new job. He is working with construction, building buildings, pouring concrete, crawling through crawl spaces to put in stuff... I can't pretend to understand or even KNOW all that they do on the sites so I will just say he helps with building buildings.

We have had appointments with the neurologist, with his regular doc, with a surgeon AND with an epileptologist! 

When we went for Sam's EEG the regular test was found to be normal but the stress test EEG showed as much seizure activity as when he was seizing, so the neuro sent us to an epileptologist. Now this doc seemed good in that he asked Sam what he wanted to do about this all. And Sam's response was to not be tuned into a zombie like before. The doctor then explained that for us its is not a matter of IF he seizes again, its a matter of WHEN. So as long as the EKG that Sam had done that same day shows up good, he will start taking an infant dose of a new med. HE is starting at the smallest dosage to make sure there will NOT be any side effect issues. According to the doctor the worst side effect is dizziness and it isn't an all day thing, just when he first takes it. SO if all goes well, he will slowly transition into an adult dose after a few months. (infant, toddler, child, teen, adult....) BUT there is one thing that is hard to swallow is that this is a very expensive medication so we are praying that the government will take the brunt of it. (lucky for me the doctors office will be the ones fighting for this NOT ME!) 

Sam also had an appointment with our family doctor and we found out he has a lipoma on his back {medical info on that HERE). And she sent him to the surgeon abut having it removed - that doctor said it was an urgent procedure and it was going to be removed fairly soon, it was most likely nothing BUT there is a chance it could be cancerous... BUT a small chance! (whew) We are still waiting to hear from them about when he is having it removed ... almost 6 weeks later. THEN he had his blood work done for the procedure and then he got a call back from the doctors office for him to come in because they found something in his blood work! So of course our thoughts go to cancer? diabetes? Why else would they call!?!?! It turns out his cholesterol was low.... nothing to stress about but it sure would have been nice to know this when they called that it was nothing major/serious.... 

The reason I am filling y'all in on this, is that this is all STRESS on Sam's mind and after 2 medical appointments in one week (Monday and Thursday) Sam woke up on Friday throwing up and dizzy and not feeling so hot. He attempted to go to work and couldn't. He went home and slept almost of the day. He said he checked his pillow  and there was no signs of a seizure... but I am wondering if he has been having them. I am going to keep track of his 'sick days' and see if there is a pattern -- as long as he tells us about them that is. 

I really wish there was a way to explain this stress to family, friends, his employers (but not to get him special treatment) just so they could understand that he LOVES his job but when stresses that are in most peoples lives are easily dismissed or do not create an issue.... can create a HUGE issue in the brain of a BI Survivor. Right now Sam is stressing about medical stuff -if he starts these meds will he be out of it again? will he have to go to more appts? will he have to move home again?, which stresses him about work-- will they understand? will he lose his job? This creates another stress in  his brain that he CANNOT control and comes out in the form of seizures.... so its a catch .22 How can we explain that his brain WILL shut him down even if he doesn't want too! His brain will cause him to sleep, be disoriented (not think straight), forget simple things, to stutter or lose track of words? 

Why is it people will take a broken arm, a stroke, cancer and even epilepsy and look it up to see what all is involved but not for a Brain Injury to help the person!? What are people so afraid of!? Just because someone looks fine on the surface doesn't mean that there is a bigger picture under that surface! 

But how long can someone keep a job when they have medical appointments, stress that causes other issues, possible seizures.... 

We are hoping and praying for an appointment with the neuro psych to help him to deal with stress, but that appointment will be another long wait I am sure... 

so in the mean time ... 

we do what we do best... 

we wait...

OH how I wish there were an easy button...

Seriously... what next!?

So for the last 5 years I have been phoning and fighting and phoning more to try to get help for our son! From when he was 12yrs old we were constantly told from the medical professionals and government offices that there was not much they could do for us "now"... when he is an adult there will be more help available. (we were quite frequently reminded {like we could ever forget} that there was no 'real help' for Sam as most were not 'equipped to handle or deal with youth brain injury'.

ya... not a big surprise to us here in Manitoba.

Even when he had seizures, we were sent to the 'adult epileptologist' since he as 15 and soon to be transitioned to them anyway, only have us tossed like trash to the curb of the hospital when we were finally being admitted in for an week long ambulatory EEG! (this was after they messed with sleep, food, meds and moods -- AND Sam had a fractured ankle!!!) Then we were moved over to the 'child epileptologist' who did nothing but drug our son to the max and created a whole other lifetime of issues we will deal with! And had plans of keeping him on the high doseages of meds until he was 17-18yrs old {basically until he was old enough to transition to the 'adult epileptologist' .... again} We could not get in to see any psychologists, psychiatrist or counsellors either without getting "we are not equipped with dealing with youth with Brain Injuries" OR the best one "you are handling this great" "call us if there are any issues" (from 3hours away and a mile long waiting list)
So now he is 18yrs old, has never had any real help in dealing with his stress, BI or issues that arise with BI's (addictions, PTSD {which we were told there was none}, etc) and is in full on denial about it all!
We have been trying to get a disablilty tax credit for him (so he can work but have a bit of extra wages to not have to claim) and we were told that NO he does not qualify. We used his neurosurgeons diagnosis of "long term permenant brain injury", "at risk of seizures", "some cognitive issues"... and we were refused. We thought we would go the route of the neurosurgeon AND the psychatrist he saw for a few days while in the CATC (child and adolenscent treatment centre) from 2 years ago. He just informed me that it is almost impossible to get the Disability Tax credit (it is very convoluted and full of crap) and he only has a hand full of patients who get it. It is easier to get Disability in the form of monthly cheques (Canada Pension Plan) BUT Sam doesnt qualify for that either!
So basically this guy- our Sammi- has had NO HELP (other than us and loads of prayer) to deal with his BI (in the formative years where he really could have used it) , so we are at a place where he is now in denial of it all -- and there will be no help for him in the future until he hit absolute rock bottom and has to try to find help then (and honestly I am scared of what that will entail with him) which I am sure we will be told it "should have been done earlier on".

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....

the call

I received a phone call last week from the PCH where my dad lives -- well someone called and I wasn't home so Dennis tookt he message and relayed to me to call them back.

It was the nurse practitioner.

My heart always does a little bit of a jump when I have to call the PCH as it is and when it is the NP that is calling it does a double flip.
She was calling to tell me about Dad's "new behaviour" (which really wasnt new but they finally took what  I have been telling them to heart and started documenting it). He has been calling out more and more (big surprise), he has been much more agitated (no kidding) and he has just generally not been too happy about things (**shock** followed by **sarcasm**).
I am trying hard to be understanding and allowing that there are many others at the PCH, but when you have a few residents that are TOTALLY incapable of doing anything for themselves, you would hope that they would take things more seriously when a family member (the only family that the resident has that visits regularily {or at all really}) repeatedly reports seeing something that is making the resident unhappy!
Anyhow... apparently they monitored and recorded what they saw over the last 2 weeks and have seen that Dad gets quite vocal (yelling and swearing) when he is uncomfortable. So when he is in his chair (his new chair that was ordered without my knowledge AT ALL)and he starts yelling, they will transfer him to bed -- and when he is in bed and he does the same, they will move him to his chair. This move I am sure will be a lot longer in coming as his room is almost at the end of the wing he lives on and is far from the nurses station and the common area. (basically I think once he is in bed ... that is where he will stay until it is time to get him for meals) I will give the staff the benefit of the doubt tho and see how it goes.
The big issue that really got me is that we are now uping a few of this med's. It is all in Daddy's best interest but it was (and still is) a big tear jerker for me. He really isnt on too much (we were able to ge thim off of alot of unnecessary medication over the last few years) mostly just tylenol for the pain of alwasy being in a chair (or bed),  stuff for BM's and a low dose for depression. The tylenol will now be replaced with something that will not do damage to his kidneys (a bonus) and it will work on the pain issue (double bonus), we are uping the depression meds to help with his moods and maybe help with the yelling and calling out -- but it may make him a bit too lucid (in my opinion) but again we will have to see how it all goes!
I know it is hard to see why giving Dad higher meds that all seem to be bonuses is hard to take, but all that keeps coming back to me is what the doctor told us when he was in ICU in Edmonton 18years ago. Dad will live with his BI (no time line was given)  and start to regress before he ....
It hurts my heart that this could be ... the beginning ... of the end? I dont want my Daddy to be in pain or live a life that he is not enjoying, but it is hard to watch this decent -- even though I have been watching it for 18yrs. Maybe I just need to get a grip and deal....

I ❤ Brain Injury Survivors & Caregivers! Never Give Up!

well another year is here and I am busy looking into more bracelets and ideas for colours and wording! I am thinking this year will be:

I ❤ Brain Injury Survivors & Caregivers!  (oak leaf graphic) Never Give Up!

The bracelets will be green with white lettering -- I have seen the template and they really POP! 
I am so excited about this year again -- especially after last years campaign when I had discovered I had sent almost 1500 bracelets to 5 provinces in Canada, 42 states in the USA and 6 countries in total!! So I have my thinking cap on  and make a new goal this year! 
I was wanting to do something other than the silicone bracelets this year but it is all about economics right... and with the cost of groceries, gas, clothes ... life basically I had to stay with the bracelets. BUT I am hoping for 2000 bracelets again this year! (so 500 more than last year!) 

I am still getting emails about wanting bracelets -- in fact i got one this morning! So much for a "june campaign' eh! lol I DO NOT mind in the least! I am so happy to get an email or reuqest for bracelets and to make up an envelope and get them out!! I do little happy dances for each one! (ya I am that weird! :D) 

Well if anyone has any good ideas and/or leads on a new idea for the 2014 Brain Injury Awareness Campaign, PLEASE let me know!  I have not ordered bracelets yet and probably wont for about another week or two! I am open to ideas!!! Email me at 
braininjuryadvocate@gmail.com

Living on the edge...

The last few weeks and days have been incredibly crazy  hectic .... stressful here. I am not usually one to talk much about Dennis on here but lately he seems to be having his own issues with his injury which have been causing me more stress. He is on a one track mindedness route it seems and he can't seem to get off it. He is literally eating, breathing and living the farm.... which is fine to a point but he gets stressed about things and will only talk about cows, tractors, the rain and how it is going to effect crops, fencing, cows, calves, equipment ... did I mention cows? So when I have had to deal with issues with Sam (and believe me these days there have been MANY of them)he is hard to get him to hear me and give me the help I need. He hears me talking but not always hears what I am saying -- almost as if I am speaking french to him. The other night Sam was having a major sensory overload issue (he had spent the weekend with grandpa and grandma then came home to 7 people, 5 dogs, the usual Sunday dinner rush, getting lunches ready for school on Monday, dishes to be washed, etc). He was vibrating like mad and his mouth was going a mile a minute to match his attitude. Dennis and my mom were talking and Sam was in his world... I had to take Sam out to the porch to help him to get re-focused on the task at hand and to regroup... Dennis tho most of the night had to keep asking things to be repeated. He said he was not able to follow anything being said and it was extremely evident ... to me.
I struggle with pointing out Dennis' deficiencies. I am always scared I am going to say the wrong thing or not get across what I am trying to say OR that he will think I am treating him like a kid or worse. So I let it all go until I can't hold it in anymore and then look out. Then I have a melt down ... and it ain't pretty...
I need to learn how to talk to him and let out my frustrations in a healthy way before things get to where I am feeling like I waaaaaay out there on that darn ledge.

Like living with a drug addict

Sam coming off this Keppra is not pretty. He has his highs and lows. The doctor explained it to us on Wed that when he is 'high' it is his brain searching for the drug in his system and then when it can't find it he crashes... just like someone on drugs. He has good moments and bad ones. He is up and down. He has rational thots and then the irrational ones follow. He is working hard to not lash out but there are times where he does.

So yesterday morning Sam woke up and wanted to go to school - he said to work on school work but I think part of it was to get away from here for a bit - which I dont blame him. So we let him go. (mind you I was worried about it because of the highs and subsequent crashes) BUT (yes that is a big but) we are trying to let him have a normal life ...and normal teens go to school... so we let him go.

I called the school ahead of time to let them know what was happening and spoke directly to his teacher. "he is going to probably on make it to noon. If he starts going really fast, touching everything and talking amile a minute he is on a high. He will crash and he will be very hard to understand, he will be tired, unco-ordinated and just generally "out of it" He also has woods at second period so please let the woods teacher know that he is NOT to operate any machines'. The teacher indicated that he understood and would look after him. (I also left a message for the woods teacher with this same info)

Well Sam got to school and didnt know what day it was (on the timetable -- and due to a mix probbly of the drugs, head injury and most likely pride didnt ask anyone) so he went to work in the library. This is where the teacher found him, got some work from him and left him for the rest of the morning.... Joshua went to  Sam's classroom to check on Sam before lunch to see how he was feeling and to se if he wanted to go home or not...
... there was no Sam  and Josh was told by the teacher that he had left him in the library this morning. SO Josh went looking for him, only to find the library empty. After a quick search of his usual areas of sitting in the school, Josh couldnt find Sam and so he texted me this info. I told him to have Sam paged by the office, only to have no Sam turn up.  Josh was worried and now so were we. We got a text he was with his ex gf but that quite a few teachers had seen him and thot he looked glassy eyed and not 'with it'. The janitor had said he had seen him and Sam was talking but not making any sense as he was leaving the school...
Josh by this time had called me and I left to go and help find Sam, the school called the ex gf parents to get them to call her to make sure that they came back to school (she told Sam she had a spare but was supposed to be in classes) She told her mom  that Sam was not with her! This caused the school to have to call the RCMP and report him missing because of the meds issues.... Sam said he didnt know that someone was looking for him and he didnt know what time it was (he doesnt wear a watch).
Josh then went with some teachers and other students looking for Sam on and around the school grounds to see if he had seized somewhere and was on the ground.
By this time Sam was crashed for quite a while and starting to go into survival mode. He was wild and glassy eyed, staggering, incoherent, hot and tired. We still didnt know that Sam had been with the ex gf,  so we started to question where he had been... and he told us "he wanted to talk with her and since she had a spare and he didnt have any classes, he didnt think..." I know he just wanted to be with someone to listen to his problems, and she probably wanted the same thing too but it was gone about in a totally wrong way.  (it was then that they asked me who does Sam talk to about things!?!?! OMG what the hell do you people think I have been trying to do the last few years!? For starters he was supposed to be talking with the school counsellor but the counsellor was always too busy!)
Sam told me when we left the school that she told him to tell a story to the school and us about why they were where they were and he couldnt remember what she had told him to say... he was confused then about what all had happened (he has a hard time with remembering the truth and what his day is forget abouat adding lies to try to remember)
Through all this Josh was in full gear panic. When he had called me he was close to tears, when I saw him at school he was white as a sheet. I told the office that when I took Sam home that I was also taking Joshua and they agreed it would be OK. Josh proceeded to tell me lots of 'behind the scenes' stuff that occurred thru this all on our ride back home. It wasnt pretty.
Sam is home now and his locker has been cleaned out at school and he will finish out this year at home and until these drugs are sorted out with the doctors.

Now the part about it all that really ticks me off is that when we got Sam back to the school, the onus of all of this was put on Sam.... not the teacher who was supposed to be helping, not the school for not informing staff of what was happening (I am sure the ex gf will get a helping of blame from the school) but it was all on Sam and what he could have done to have not gotten into this mess in the first place...
I could see it if he was a normal teenager, I could see it if I had not given them a heads up about this, but i HAD informed the school of what would happen and how to take steps to take precautions.
I know that some people will put the blame on me: "well why did you let him go to school if he is like this?" my answer is because I am damned if I do and damned if I don't. We are constantly being told by everyone to let him be a kid! We DO let him be a kid, we ENCOURAGE him to be a kid, we WORK HARD to make sure he is living as normal as possible life. Going to school IS normal (the school told us to make sure that when he had days of feeling like going to school let him go...)
...so we let him go.
I take part of the blame because I have that catch .22 thing going on in my head about letting him be a normal teen .... but he is not a normal teen in some respect.
Sam takes part of the blame because he was acting like a normal teen
but what blame is the school taking for essentially 'losing' our kid at school?
What blame is the ex taking when she took him off of school property in the condition he was in?
ast night our phone didnt ring. There were no follow up calls from the school board, form the RCMP, the ex's parents, nothing.
So I am guessing Sam is taking the brunt of it all ... and all I want to say to them all is "where have you all been the last year? what have I been telling you? Did ANYONE listen when I called this morning and explained what to watch for?"

Now to top it all off, when they asked about who does Sam talk with I had to explain about our trips to Winnipeg to the psychologist and our trying to find help but not finding any. I am still waiting for a call back from the Health Unit from a counsellor there that was trying to set us up with a psychologist near by but I have not heard from her (and the health units phones are down right now -- sigh)So I called him myself and left a message and have not heard back from him either. Our psychologist in Winnipeg is going on Mat. leave in mid June... and the psychologist in Neepawa is retiring... so tell me where in the hell does that leave us!? I am busting my butt trying to find us help (as a family and as individuals) and everyone says "oh not here! go to......" sigh
I am tired and left feeling very raw thru this all...

Helping spread awareness

I have 400 of these and they will each have an oak leaf pinned to it to wear on your coat, shirt, hat wherever!! I am so excited to get them out to the public and help spread awareness of Brain Injuries! If you want one or more let me know! Any donations for the bracelets will go to the Manitoba Brain Injury Association or donate you your local Brain Injury Assocation!