Needing to be stronger than I feel

today is the day I guess.
after 5 long years of medical appointments, long drives, days in the city at the hospital, waiting for appointments to be done while I wait at the Ronald McDonald house, constant phone calls looking for help, nights that never seemed to end as I watched him sleep in a hospital bed, days that I wondered if they were ever going to get here .... are here now.

Sam moves out today and my heart is so .... happy for him to be able to be at this place where we wondered if it would ever happen and yet tired from holding in all my emotions this week, aching from worry of whether it is going to be too much for him, breaking from the knowledge that he is not my little Sammi anymore. I just want to hug him and never let go....

We have all been through so much mental anguish these past few months with him that I know it is for the best for us all. We will not be so touchy, so grouchy and so short with each other. It is time for him to stand on his own two feet and learn to make his way in the world. It is time for him to start making mistakes and most importantly to learn to deal with the fact that he does indeed have a brain injury and has to take measures to learn to look after himself AND the rest of his world.

We found a great basement room in town {which is 30minutes away butonly 5 minutes from his work) where he will share the kitchen with the owner. He has a large area in the basement to use for a bedroom and a living space, a huge bathroom (with laundry facilities), use of the kitchen & yard. He has no yard work to do and there is the chance of a housekeeper once every 2 weeks to do light cleaning.  He will not have tv (until he has saved up some money to get cable or satellite) but he does have internet (so once he has saved up for a laptop he can get netflix or whatever to stream tv). He does have a tv with a DVD player so he will be good for movies.

I am excited for him but at the same time I am worried (I am mom...) I am worried that his landlord will get frustrated with his memory issues before he has a chance to get settled into his routine. I am worried that he will not look after himself with eating (and all the things that teens do when they leave home) and he will get sick -- which can result in him seizing, which means hospitals, no work.... not even going to finish all the worries I have here. Sam was looking fairly stressed yesterday as we were packing and making lists of groceries and things, so we a forgoing church today so that it isnt so much activity {and emotion}  for him and we will head in to the house after lunch. These are the things I mean when I say I worry he doesnt realize the toll that things take on him and all the preparing we have tried to do with him over the years all come down to now. This is where his denial kicks in and he will over do it and ignore the signs his brain will give him before it shuts him down....
I am sitting here this morning trying to stay positive and tear free today (which I have failed at already). This IS a joyous day for Sam and for Dennis and I .... and I need to enjoy it as so, but my heart is still such a mess, my head can't seem to shut off and the tears keep trying to spill.

I have told the 'landlord' about Sam's seizures (in case he happens to have one/some and he hears them OR Sam wakes up and knows he had one he will need a ride {or 911 call} to get to the hospital) and as much as I wanted to explain all the small issues that he may (I am hoping to not say will) notice but I didn't. It would be too much to explain, Sam would be embarrassed and it might possibly freak the landlord out and rethink his new tenant. But he does know of Sams injury and I hope maybe that is good. I know the landlords mom so he may know more than I think.... lol thank goodness for small towns.

... to grown man and graduate <3 td="">

From 12yr old boy ...

I know there are mom's (and possibly dad's) who will read this and not have a clue as to my worries and write them off as I am an over bearing mom, or flippantly say "oh you are worrying too much, he will be fine"  but until you have walked the journey I have in the last 5 years you have no idea. To be honest Dennis has no idea of all that Sam and I have been thru. Sam is the only one who knows this whole journey (and even that is not complete as his memories are scattered due to his BI and the year he lost on seizure drugs....) and he is nervous but excited..... so I will be strong {at least stronger than I feel} for him as I have been the last 5 years and I will not let him see me cry.

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".

First time for everything...

 Well just under 2 weeks ago I sent an email to a FB group I belong to (Help Raise Traumatic Brain Injury Awareness) and told Dustin (the group admin) I had TBI awareness bracelets (and 100 Oak Leaf Stickers) again this year ....
Last year I received about 200 emails over the entire year and made my goal of a new country to send a bracelet to (that would be Russia) -- so to say I am just in awe and overwhelmed at the response this year is an understatement!
My last actual count of requests were 375 emails PLUS messages on FB and I have had many MANY more since then!
I have tried to keep everything as organized as possible by returning an email to all sent to me, along with a note to the sender that I am working on getting bracelets to everyone who emailed so some numbers of bracelets just wasnt going to be possible. I also wrote each mailing address in a notebook so as to keep track of where to send bracelets (and praying to not miss anyone!)
I have a few things to add to each envelope that I still need to do, along with addressing each envelope and putting our return address too. For the frist time ever in this awareness journey,  I have asked for a bit of help from people who live in our area but so far there is no solid help.
It looks like this could be a slow process and I pray for understanding and patience from everyone.
I will try to keep the blog up to date on the progress and on my goal (so far so good!).


I am going to ask for prayer for a few things (if you wouldn't mind):
1. Help in getting this next step done in a timely manner
2. Making sure I get bracelets/stickers out to everyone who has asked for one (or a few)
3. I also have a request that I will not put on here but God does know (well of course since He knows everything) but just that if it is needed that it comes to fruition.

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....

And it begins again ...

So it begins again. My third year of giving out silicone Brain Injury Awareness bracelets! This year they are green with white lettering, a new font, a new leaf graphic! I am so excited to start getting these out into the public!
I also have 99 green oak leaves to give away. I am seeing what people think of these  to maybe switch it up a little -- just in case people get tired of the whole bracelet idea.  A local business made these up for me and we will see how they go. (the oak leaf is representation of survivors - there are over 600 different species of oak trees -- kind of similar to survivors in that there is no two injuries the same!)

I am starting to get my address book ready, the letter that I send out is typed out again and printed with a new leaf picture this year and I am busy with putting pictures out into the social media world to spread the word on this! If you are on instagram and want to follow me: @mb_farmgurl my facebook link is on bottom left side of my blog, my twitter account is @FarmGurl72

As in the past all I ask for with receiving a bracelet (or sticker) is that you let me know you got them and then to also post pictures of you wearing the bracelet (or where you put the sticker) and hashtag it  with brain injury support (please tag me in the pics on instagram or FB so I can see it and share with others too!)
I have two goals again this year and they are as follows:

1. Spread awareness that will encourage survivors and caregivers AND encourage the general public to GET EDUCATED on Brain Injuries -- it can happen to anyone at anytime anywhere!

2. To send some bracelets (and now also stickers) to a new country! Last year I reached my goal and sent bracelets to Moscow, Russia!!!  Bracelets wen to 5 provinces, 42 states, and 6 countries -- this year I want to see those numbers grow, grow, GROW!

I have approached a few "local" celebrities (local as in Canadian) to offer bracelets to them to wear but as of yet have not heard from anyone. (please keep praying that we will find someone to help spread awareness on a grander scale than what I can do in my little corner!)
If you have any ideas on spreading awareness or know of anyone that would like to help with this or if you just want to request a bracelet(s) or sticker(s) please email me at braininjuryadvocate@gmail.com

Here is to another awesome year of spreading awareness of Brain Injury!! GET EDUCATED!!!

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....

another stressful visit ...

so we headed over to visit my dad yesterday afternoon after some running around for the farm and groceries, banking etc. We got to his room to find his door partially open and voices coming from inside. Dad was being woken up, cleaned up and put into his chair. I was not overly bothered at first at the door situtation -- as it was most likely over looked and just not closed tightly and no one could see in .... but we could definitely hear what was going on inside.
There were two aids getting him up and they were talking to each other (which is not a big deal) but they were talking to each other about pay cheques and amounts and other work related issues (we were thinking that contract talks must be happening by the sounds of the conversation) and  they were obviously talking over dad and ignoring him completely. He was becoming quite vocal and loud ... he was moaning and swearing at the ladies and becoming belligerent. Now my dad has severe brain damage and for the most part has the mentality of a 7year old(and most likely it is less than that). So his go to answers when he is frustrated is "my bum" or "f--k you" or the most recent and most used "I'm gonna f--k you" which is what was started last night ...again. As dad was trying to stand up for himself the aids ignored him, which made dad get louder and more vocal which made them louder to talk over him!
After a couple minutes of this I knocked rather loudly onthe door and told them who I was and that they were ignoring my dad and he was stressing out! They apologized.... then closed the door! I was not impressed.
When they left (very quickly and not making any eye contact I might add) we went into see dad and the swearing and belligerence continued. Dad was in full gear, so I went and spoke to the lady who is supposed to be our liaison with the staff. I am not going to go into detail about what she did (or rather didnt do) but I will just say that when you have a job working with people, whether they are healthy and are capable on their own or not, and the most important thing to note is that there are other expecting your help in caring for their loved ones! The care you deliver on a daily basis to our loved ones is not just for them, it is for those of us who come to see them too. I would love to be able to look after my dad but I can't. I KNOW I am not mentally strong enough to be able to be his caregiver, I am his daughter, not the person who can change him and clean him. I know for the most part my dad is well cared for where he is but of late our visits with him have been extremely stressful and not happy, smiles and rainbow visits and after hearing and seeing what we did yesterday makes me wonder if they have been talking over dad a lot lately which would explain the past behaviours with our visits. They have been told to not do this as dad will also bite as a way of expressing (or posisbly he feels protecting) himself, but since he has had his teeth all pulled (they were rotting due to pocketing food and acid) they do not seem to be as conscience  of watching their manners (because his 'bites' no longer are 'dangerous' enough to draw blood or break the skin).
One of the comments that dad made to the laision was what he was going to do to her and she laughed and said "you can say that all you wants but it isn't going to happen'. She laughed it off and turned to me and said 'its been years since anyone has said that to me'... I was in such shock over it that my reply of "well I never want to hear my dad saying it, especially to me" didnt come out of my mouth until she had left!
 I know people can say he doesnt realize he is saying it, but put yourself in my shoes. All my memories of my dad and I are being replaced more and more frequently with these visits. What would you do? What do you tell yourself to get through those doors of the PCH? How do you want to visit your loved one when you know your visit will be a negative one that has the potential to stick with you longer than the happier ones?

things are {possibly} happening....

Oh my goodness I am so excited!! I have a few 'irons in the fire' so to speak for this years campaign for Brain Injury Awareness! I have ssent out a few emails and have had respinses back that they are moving on to the next step .... breathe Jodi... breathe ... and I am just over the moon excited if they (or even ONE) pans out!
I dont want to say anything right now but HOLY-Mackinoly Batman... very exciting!! Keep watching here and I hope to have a something to share in the near future!!

 (off to check my emails friends!!)

and so it begins ...

so Sam has now officially finished high school ... yay... umm  I mean YAY!!! I am so proud of him and glad he has finally finished and is able to start working on living his life.... on one hand... and yet on the other I am scared, nervous and sick about him starting this life.
He has a job now and drives 30 miles to it. he wears a uniform and is in the produce section of a local grocery, which is all fine and dandy. BUT did he remember to put on his papers about his BI, his chance of seizures, his issues with sometimes forgetting simple things or his sundowing if he is tired and is starting a shift on a later part of the day, what about when he has a braininjury moment....

i could go on and on over my concerns and worries. I try very hard to remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (NIV) but sometimes it creeps in. 
He HAS had jobs before and he has done amazing with them, but they have all been for family or friends who understand where he is coming from. 

I also worry about his future with regards to his future bride... I know I am jumping the gun here HUGELY... but I am his mama and I want her to understnad what this wonderful man has had to overcome and continue to overcome to get along day to day.... 

I worry about him driving when he is tired, about him when he is out in crowds and they get to be too much for him...

i guess it all comes down to it is time for me to start cutting these apron strings... he is growing up and will be soon moving out (hopefully not too far away) and I will miss him.... 

i worry, I am a mom, so I am pretty sure that it is written in my job description somewhere.... if its not I may have deifinitely it penciled in .... 

how do i start to let him go? I lean on Dennis ... a lot ... i mean A LOT. i sit and try hard to not cry when I think about it and i pray... and pray and pray...

for Sam

his future

his job

his future relationships and one day wife

for me to be able to handle this new stage gracefully without holding him too tight or causing him to run from us....

if you have any advice I am all ears...

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

{just please don't} say anything

It is that time of year again when the Christmas rush is upon us. There are carols being sung, trees decorated, nativity scene set out, food being eaten, cookies baked ... basically memories being made. And once again I am at a time where my heart is aching, tears are always just there. 

I tried to get into a Christmas-y mood early and set up my Nativity scenes, set the tree up, baked some cookies and had carols and Christmas songs going in November this year --- which is a HUGE change for me. I have been fighting like mad to stay cheery and in what most people would call a Christmas mood. But it is now crashing down around me and I want to sit and cry, scream, crawl into bed and pull those covers over my head until this whole time is over. 

I know every year I struggle and this year is no different -- even with the head start to get into  the Christmas cheer before the Bah-humbugs got me.

But a few weeks ago I found some wonderful pictures of my dad with Josh and Sam just after Sam was born -- this was also the last Christmas (1995) I had with Daddy and  sadly the last time I saw him in person, before SHE and her boyfriend decided to so violently beat him (that was in August of 1996).  I posted these pictures on FaceBook and made a comment to the effect of that as much as I loved finding these pics I wish there were more of him and I together too. This brought comments of "just be glad you still have him" and "at least you are blessed to have him in your life still" and the like. I am sure they thought they were trying to help or that they felt they knew what they were talking about...

But I wanted to scream and rant that I dont have HIM! My dad was taken from me that fateful August afternoon when she and her boyfriend decided to take my Dad's life in their hands. The two of them took my dad from me. They took my childrens grandfather from them. They were able to beat him senseless, cause him to slip into a coma and walk away. Scott free. They both are walking free in the world able to enjoy life and their children and possibly grandchildren....

But what really gets me is that people minimalize my feelings of loss and grief with the assumption that my dad is still 'here'. 

Let me get this out there and set the record straight please.... not just for me but for others who may be living with this too! (I surely cannot be the ONLY one in the world)

When I go to visit Daddy at the PCH, it is only his body that I am visiting. The man in the wheelchair  is just the shell of the man who was my Dad. Gone is the man who had a wicked sense of style, a fabulous sense of humour. His laughing killer blue eyes would literally twinkle when he would tease me. They would dance when he would talk about his grand babies. Daddy's enormous, generous heart is not there. His love for semi's, family and "corny-make-you-cry" country songs is gone. Gone is my Daddy's love for life, singing and playing around with his guitar.

I know I can share all this through my with my kids -- and I truly hope I do, but the hard part is having to tell thim this with him sitting there ignoring me, not knowing me or even worse swearing obscenities at me or swearing very inappropriate things to me. When family/friends (and there arent many) come to see him or talk to him on the phone they are not graced with this kind of behaviour -- so they 'see'(or hear) the best and to be honest, I think Dad probably DOES know them and have memories of them. Dad may know I am "jodi" but the fact that I am HIS daughter is completely and utterly lost on him.

SHE and her boyfriend took not only my dad from us but they took my memories with him.... with him. I am an only child, of divorced parents and my Daddy was my 'bestie'. He and I would spend time in the trucks, shopping, watching tv, playing with toys, visiting family -- it never mattered what we did as long as we were together. I am an only child and I have no one to help me to remember times with Dad. I have no one to share those "Oh remember when we ..." or "Do you remember that time that ..." moments. And even sadder the old memories are now being replaced with the vulgarity he spews at me from time to time (and this is getting to be more and more frequent) and the fact that I am not who I should be to him anymore. His daughter, his partner in crime teasing my gran or my aunt, the one he would phone from work to share a joke with. I have no one to share the work load with (other than Dennis), guilt resides where love should when I cant get to see him and he has had no visitors for a few weeks. Guilt sits where love should when I tell people that my Dad died that day when he was beaten and I am told by others "be happy he is still alive". People who never knew my Dad or knew how our relationship was. How much I loved him and he loved me. How much we talked and laughed in a phone call, or how much was never said but felt as we would sit and watch an old movie or go for a coffee. I tell him now that I love him and his response is "i love you' but then it is his response to everyone from the nurses aid to one of the maintenance guys,  whether they say it to him or not. 

I dont know if I will ever get to fully grieve, because of  these ideas that I am "lucky" to have him. I WAS very lucky to have him as my Daddy but  now he is gone and I am left with his shell and a huge empty hole in my heart where he used to be. 

Ambiguous loss sucks and what really sucks is that no one understands(what I live with is the same as with someone who is caregiving someone with Alzheimers or Dementia)... and the huge irony in this all is that I am living the same issues that my survivors are with the need for education of what we are living. 

If in your travels you happen to encounter someone who may be struggling (or they may not 'seem' to be because they are working hard to keep it under wraps) with loss or grief, please choose your words carefully. You never know what hurts or holes they are trying to heal or deal with. And when it comes to loss you just never know... there are many, many kinds... 

And if you ARE struggling with this horrible ambiguous loss issue,  I would be interested to know how you handle it whether it be graciously or not. Do you have a standard go to answer for people if they happen to belittle your feelings or do you go from the cuff? What do YOU do? 

Unsung Hero

I found this post in my drafts folder! It was started last year -- things must have gotten busy and I forgot to finish and post it! So here it is...

These are a couple of heroes we have encountered at our BI support meetings. Charlie and Peggy...
Charlie is a BI survivor and  Peggy, his wife, is (in her words) the Surviving Caregiver.
This wonderful couple seems to have taken a shine to our Sam and he to them. They are our extended family now.
Charlie was driving a truck that was hit by a train and survived.  Charlie is one of the main reasons that Sam goes to the meetings, I think because  for one, Charlie is in the same boat as Sam. They are both miraculous survivors of accidents that typically people dont make such amazing recoveries with. They both are walking miracles and are living with the reality of "well-you-look-fine-what-do-you-mean-you-have-a-brain-injury" mentality of the public. Reason number two is that Charlie can make Sam smile no matter what his day has been like.

Peggy is SO amazing too! She has been through so much with not only Charlie and his recovery but with all that life throws at you! (she was also a careigver to multiple people, like me!) I so enjoy geting texts and FB links from Peggy -- she always manages to make me smile too, no matter what my day is like. She is a busy lady looking after her hubby, mother in law, cooking, gardening .... life. We try to get together with them at times other than just at BI meetings and there IS a dream for Peggy and I (and another BI caregiver friend) to get away for a weekend 'just us girls' ... but so far we are all too busy to get away! LOL

Both Peggy and Charlie are big advocators for Brain Injury Awareness, volunteering with P.A.R.T.Y programs in the area, helping with the BI walk that our group held in June, getting bracelets out to people, WEARING  bracelets!!! I honestly dont know where I would be the last few years without Peggy and Charlie in our lives to be friends to talk with about Sam and where we are in life! So I just wanted to take some time and some blogging space inthe universe to hold these two amazing people up and let the world see some amazing Survivors and Caregivers who make a BIG difference in lives!!

Thank you Peggy and Charlie!! We love you and you are our heroes!!! 

xoxo

Can I get a WHOOP! WHOOP!?

I had a bit of a shock last week as I was looking thru my Brain Injury Advocate email acct and found a about a dozen or more emails from people who emailed me back in June about wanting bracelets! My heart stopped and I felt a bit sick ... people had emailed me and I had not seen them!! Luckily, I still had bracelets left (not many), so I prayed... and prayed... then I started addressing envelopes, signing letters and filling out some window cards for their envelopes. Then I started playing with the number of bracelets in accordance to the requests... then I started replying to emails and moving them to my "inbox". I was able to get out bracelets to every one of those emails. Sadly not all were the numbers they were requesting but I did get them out! Now after lunch I will put them in the mail and they will be off to their new homes!

So let me state this for the record...

ALL 1500 TRAUMATIC BRAIN INJURY AWARENESS BRACELETS ARE OUT IN THE WORLD!!! (can I get a whoop! whoop!?)  I am so thrilled to have been able to not only send bracelets to a new country this year (Thank you Russia!)

I have had many beautiful emails sent to me of survivor stories and caregiver stories. I will try to sit this winter and reply to as many as I can on a more personal level. My heart would soar when I would see a number beside my email inbox and see that someone was sharing their corner of their experience with brain injury with me. Some stories brought me to tears and some made me smile but ALL warmed my heart! THANK YOU to everyone who emailed and asked for bracelets, picked them up in the public venues in our town, donated time, money or other things for me to be able to do what I have done for the third year in a row! I am truely blessed to have such wonderful people in my life personal and via the internet! I wish I could hug you all for helping me in spreading this awareness -- because lets face it without you guys sharing, emailing and talking about it... it never would have happened so give yourselves a big pat on the back!!! WAY TO GO!!! 

I am excited to see what next year will bring and I am already working on the campaign, my letter and what I will be using to help spread awareness!! So please stay tuned!!

OH NO!! Emails from June just found on my acct!!
 ACK I HAVE to get bracelets to these people!

envelopes, envelopes and more envelopes all filled with BI Awareness bracelets!

Getting things ready to go to town to the post office!!

My bracelet and awareness basket it now empty... how will I spend my time!? 

Where does the time go!?

It is so hard to believe that yet another summer has almost come and gone.  NOt only has the summer been flying by but so has life  and by life I mean kids growing up! Joshua graduated this June -- sigh. (I am feeling so old some days!) AND he has moved out. ok, he moved into our old house across the road but still, he is not living in our home anymore (although we DO see him more now than when he lived with us -- go figure...) 

Josh receiving his diploma!❤

Proud papa and mama! 

Our graduate and his beautiful girlfriend Dana! {we heart her}

Official "grad pic" He looks like one of The Duckmen! :)

Another Brain Injury Awareness campaign is also {almost} done too..... Well what I mean is I am not mailing out piles of envelopes every week now, but I do still get a trickle of emails with requests for them. I have about 100 left and hope to continue sending the bracelets out until they are all gone! 

This year I had one goal for myself with regards to the bracelets and that was to send some to a country I had not sent to last year! Then one morning in July I received an email with a request for some, so I replied back to please send me their mailing address and low and behold it was somewhere I hadn’t sent any bracelets! MOSCOW, RUSSIA!!!  I was so excited and that prompted me to map out everywhere I had sent bracelets in total! I discovered that I had sent bracelets to 5 provinces in Canada, 42 states in the USA and 6 countries in total!!

 I was shocked!  I still AM shocked! 

That was almost 1500 bracelets out in the world! 

So now I need to work on a goal for next year -- maybe it should be to deliver some bracelets in person ... {grin}

The summer has gone by so quick and we have been so busy with the farm and the kids that it is hard to remember all that has happened.

One big surprise for Dennis and I was in July when we went to Dauphin Bible Camp (where Isaac was working as a work hand) to see one of the teens from our church be baptized). After church that Sunday, there was a baptism planned for 4 people and there ended up being 13 in total when it was over and one of those 13 was our boy Isaac! He felt lead to be baptized as he was walking up to the pool and in his testimony he told how he was wanting to be baptized by our minister Pastor Dean (who moved to Alberta a few years ago). He told how while he was walking up he felt that God spoke to him telling him that it didn’t matter WHO did the baptizing, it was WHO he was being baptized thru in the NAME OF.

We were {and still are} so proud of him! 

Isaac giving his testimony ... ❤

Declaring he has accepted Jesus

Hold yer breath! :D

Born again!! ❤❤ so proud of him! 

It was a big step and we noticed a huge difference in him when he came home that day and while he was at home for the week and a half before heading back to camp for Cabin Leader Training (CLT).  All he could talk about was what he had learned, read and saw, other kids that were there and what they had/have learned! He read the book of Revelation (not my first choice of books in the Bible to read but it is so Isaac! :) ) He was talking about next year and working at camp for the summer already too! He was so excited about working with kids and going back.

We pick up the boys next week from camp and this weekend Hannah heads up for teen camp. Then next week everyone is home and we are getting back into regular life routine and getting ready for ... Ugh... Winter 

This fall school season will see Sam in grade 12 (not sure if he is going to do an entire year as he CAN be done after the first semester), Isaac in grade 11 and Hannah in grade 9. SInce Joshua has now graduated  and is well and settled in our ‘old  house’ across the road AND working full time but also plans on going to get his Class 1 Drivers License for trucking. 

Dennis and I are busy with the farm and life and I just signed myself up for some night courses in photography at the local college. So this winter I will have something to keep me busy now that I am not running back and forth to Winnipeg with appointments. 

As of July Sam is2 years seizure free and this  August he will be one year without medication and back to his ‘normal’ self. I say ‘normal’ as we still have issues with BI moments and then there are those darn hormones that like to throw in monkey wrenches where we don’t expect OR want them! Lol But then if life were too normal, who would want it!?

Just a quick update!

I am going to just say now that we are still without internet in our new home---agggggh! I typed this letter out and waited until I had free wifi to post this! 

I have always known that guilt sucks but this past weekend it really hit hard...

This weekend a beautiful TBI caregiving mom had to make the hardest decision ever to make. She had to decide to take him off of life support. I cannot imagine what she had to go thru to get to that decision and then to not only follow thru with it but sit and wait while the child she gave birth to and raised, nurtured and loved as a baby and then toddler, helped to learn to ride a bike and go to school.... Then to live thru his quad accident in 2008 and again start over with all the teaching all the basics and learning herself how to adjust to a ‘new normal’.

Whenever I hear of the stories of survivors and caregivers struggles with their journey into surviving and continuing life as a Brain Injury survivor I struggle with guilt.

How come our Sam was able to survive a gun shot to the head when most children do not? How come he not only survived but thrives today? How come Dennis was able to survive a major truck/train accident and then go on to marry, have kids and live a life he loves? How come my dad was beaten up and lives but only as a quadriplegic with severe brain damage? 

In the past few months I have had a friend, who as a kid back in the day, was very close to me, lose her young 6yr old son to brain cancer. I have read numerous accounts of others with children who have survived brain injuries to have a multitude of issues to live with on a daily basis! I have heard of stories of people who had lost their children to something that would have resulted in a Brain Injury...

It makes me cry every time I hear these stories. It breaks my heart to know that there are moms and dads out there that have to say goodbye to their sweet babies. How come we were so lucky? I am not saying I want to trade places with others, but why us and not them? 

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

On a more cheery note:

Bracelets are flying out of our house at a phenomenal speed and I made a post on a FB page the other night to see if anyone else in the TBI world would like some... Well within less than 24 hours I had 82 emails in my inbox and so many more responses on the post! I was OVERWHELMED!  Then I started to read some of the letters and my heart broke and soared at the same time...I am trying hard to reply to emails as I can, but since we have no internet at home it is hard to do and my phone is waaaaaaaay over its limit usage on internet ... I am working hard to get the emails with addresses in them wrote out so I can get people bracelets but WOW! I am just absolutely gobsmacked at the requests! 

I started with 1500 beautiful white and green bracelets this year and as of last Friday (May 31st) I was down to 450-ish. All the kids in our kids school were given one along with a write up in the school newsletter about BI, I have been sending bracelets out in the mail to everywhere, there are local businesses where I am refilling their baskets with bracelets every time I am in town and I have even had my bracelet removed from my arm so that a lovely lady could have one! 

Brain Injury Awareness month has just basically started here in Canada and already 1000 people are becoming educated about BI’s. Now if we could only get it to a more global scale... maybe there would be less moms and dads having to make decisions that are too hard to imagine ... Maybe there would be more parents and other family members walking out of the hospital actually armed with knowledge of what to expect when they not only get home but what could occur in the near AND distant future! I hope that people are taking my challenge and educating themselves (and others) on the severity of Brain Injuries! Time will tell!

they're finally here!!

Well our 1500 beautiful Brain Injury bracelets have landed!!! Joshua picked them up this weekend for me and brought them home last night! Now onto the fun part! 

If you want a bracelet (or a few to share) just email me at: braininjuryadvocate@gmail.com

with your mailing address and I will send them along to you! The bracelets are free but if you wish to make a donation to them that is up to you! You can also donate to YOUR local brain injury association! All I ask is if you take some please take some pictures of yourself (and others if applicable) wearing the bracelet - you can either email me the pictures or friend me on FB and tag me in the pic! I will add it to our FB page Canadians with Traumatic Brain Injuries so that survivors and caregivers can feel the love! (I would love to share where you are from also!)  I only order 1500 this year because I changed the bracelets to painted debossed ones so that increased the price a bit on the ordering end. I have a few left from last year (50 or so) that are the all green with Aquired Brain Injury on them if anyone would like one of those... 

Well I am off to spread a bit of awareness and share my  Monday smiles with people!! 

so excited!!!!!

I hope to have some exciting news to share tomorrow!!! So please stay tuned!

An inspiration to me...

Now a while back when Duck Dynasty started on A&E I saw it advertised and thot 'what a weird show! Nope I wont watch it!' ...

Famous last words.. of well... yes a fool!

 I dont remember how I came to watch the show but I do remember the impact it made on me as I watched Phil Robertson talk, Willie, Jase, Korie and Miss Kay interact. I was in love with a family that was so much like our own in so many ways and yet .... not.
Then came the kicker from the show that had me hooked from the start of the last scene: this beautiful, fun loving family sitting down to dinner together, hats coming off, heads bowing and Phil saying not only grace but a heartfelt, jaw dropping, simple thanks to the Lord that brougth tears to my eyes. I was in awe!

We have started watching Duck Dynasty (and now that we have found where to find Duck Commander) as a family. Our entire family are fans of the Robertsons and we all have our "you remind me of..." moments while we watch!
I love the way they work together, support each other and work hard to make thier faith and family first in their lives. But there are days where I just want to sit and cry as I watch an episode (or 3- thanks to the PVR! :) ) I wish our kids could appreciate their faith and family a little more. Now without saying any names we have 2 that seem to be doing their best to do the opposite of everything we have taught them and then the other 2 that seem to be doing well with taking advise, talking thru problems and walking in faith. We have had one child tell me that they don't believe and my response was "it jaust makes me pray harder and more for you". There is a lack of respect towards our rules and sometimes our beliefs from the 2 that are seeming to be walking away from us.
We are in family counselling and Josh doesnt come to ANY meetings- he is 18 (almost 19) and doesnt need or want any help... so what do you do?
The other is rude in the meetings: ignoring the counsellors questions, turning to face walls, blaming everyone for their problems instead of looking at their own life choices. This attitude follows us home with expectations that everything is 'owed' to this child because they have gotten the wrong end of the stick with life. (or so it seems like that is the reasons for their behaviour) This child also wants to move into Foster care BUT only if they can move and live where THEY want. Even the counsellor AND their youth counsellor said that is not the way it works.

I know every family has its moments and its different characters that all make up the family unit but how do you deal with the family as a whole when 1 or 2 dont want to be part of this family!? It is so confusing how 4 kids raised in one house by the same parents will come to such totally different ends of the spectrum! Dennis and I KNOW we must have been doing something right somewhere at sometime when we have 2 that are on that faith and family path and working to stay there!

I am almost finished reading Willie and Korie's book 'The Duck Dynasty Family' and have really enjoyed it. But again there have been a few moments of tears with family stories and the closeness of them all.

Dennis and I have always worked to keep our family  close and unfortunately somewhere we dropped the ball but we will continue to work hard to keep our family together. We sometimes talk about how when you think an accident like we have all survived, you would think it should bring ya'll closer together.... apparently not in our case. It is really sad because BEFORE the accident we were a close, tight knit family like the Robertsons.

I would love for our Ginter family to meet the Robertson family in person.  I know all our members would love it! And maybe there would be a residual effect of meeting them to know that there ARE other families that love being a family...

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....