Sunday, April 27, 2014

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.

Tuesday, April 22, 2014

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".

Sunday, April 20, 2014

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.

Friday, April 11, 2014

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.

Monday, April 7, 2014

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....