... there is something you would think that maybe I had a handle on by now! Trusting in His plan and His time. I mean, really... but here I sit and worry and stress and worry again (just for good measure maybe?!)
Sam has been in the Adult & Teen Challenge Program for over 6 months!! (6 months and 13days to be exact!) HALLELUJAH!! He has had struggles with things and he has come through from tough stuff but yesterday we received a text with some answers to prayers that I had been struggling with myself. I am not going to go into details but I cried when I read the text then sat on a rock (we were processing calves and I was in the corrals) and thanked my Heavenly Father...
The One True King!
The Great Physician!
The Great I Am!
The Alpha & Omega!
He who knew me before I was even born, before the stars were set in place...
The One who I talk to a crazy amount of time each day.
And I cried... for my unbelief (in His timing), for my feeling like He wasn't hearing my cries, my prayers, my aching heart...
And yet He did and it was all in His time.
He knew that Sam had to get to a certain place before things were revealed to him. He knew that Sam needed to be crying out for Him...
As I sit at my desk everyday I see a quote from Alexander McLaren that reads:
God's help comes not too soon, lest we should not know that blessedness of trusting in the dark; and not too late, lest we should know the misery of trusting in vain.
and every day I would pray and worry about issues that I needn't have worried about - I have been humbled by answered prayers! Because prayers are being answered, the eyes of the heart are being opened and the Lord is being praised!! All in His time. I need to remind myself of this daily and trust, in the dark and in the sunshine!
I have been smiling and rereading the text in my head and I can't stop praising!!! God is good - all the time! And all the time - God is good!
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
2431 days between Sam's accident and when we actually were seen by a neurologist.
Not a neuro-surgeon.
Not a pediatrician that was head of the Brain Injury division in the hospital.
Not an epileptologist.
Not the family doctors.
An honest to goodness neurologist.
Last summer, Sam was having some issues with major headaches and loss of peripheral vision in his left eye. He had had a few of these instances over a few months before he finally told us and we were able to take him to see someone about it.
That day in October, started out with a trip to the walk in clinic (to the north of us 30-45mintes), followed by a referral to the optometrist (to the south of us 1.5hours from home in Brandon), which lead us to the hospital ER (referral from optometrist). The ER doctor then sent along a referral to the neurologist, which we finally got to see in March!
I am not complaining.... well not much.... ok I am trying hard to not complain.
I am just tired and frustrated with our medical system. The last few years (especially since the seizures started) Sam has had many different manifestations to stress. Beginning with the seizures, he makes a strange clicking/clucking noise when he gets stress, headaches and then the partial blindness and headaches. I worked hard to find someone to help Sam in dealing with the stress ever since his accident and yet all professionals kept telling me that "he was fine". Sam has never really dealt with the reality of his BI. He will tell people about it, but it is mostly just to see their reaction or to shock them.
In reality, Sam will not readily admit to an injury other than the pure physicality of it. He will admit he has 3 fragments still in his brain, but he is not admit that he has issues to deal with, so forget about looking for help to deal with the issues. NO matter what we tell him or how we tell him that everyone has something to deal with just that he has a much cooler story to tell!
So now we are finally seeing a neurologist, after 2431 days, and he is 19years old (but acts more like 17yr) and we cant work as hard to get him the help he could use, because he is 'technically' an adult. We are always working to help him keep moving forward in life. To try to gain those 2 years he lost socially. W try to help him to set up his finances, appointments and schedules so that they work for him. One thing that helps is that he works with us and since he has been here he hasn't had any headaches or peripheral blindness.... that that doesn't mean he hasn't had other issues.... because he wont tell us about them until he has had them for a while.
This neurologist has us going for CT's and EEG's again here soon and Sam is not impressed with this. The Dr. wants to be sure that all seizure activity is gone and he wants fresh scans of his brain. I am happy about these as the EEG will help to settle my mind on the seizure issue (as I said before Sam wont tell us if there is anything occurring until it gets to be too much for him).
just another example of how TBI's are life long...
no matter how far you have come...
no matter whether you think you are done with it all...
it will still jump out and bite your ass ... just to remind you it is there...
so to catch you up on the latest here in our corner of life:
Sam is now done with school, moved out to the town 30miles from us into a cool little basement suite and has been working for a local farmer there for about 2 months.
He seems to really enjoy his job (working with both cattle and grain -- the grain seeding and all that is included in that is a new adventure for him).
On this past Friday, Dennis and I headed into Brandon for a quick trip to pick up some farming supplies and received a phone call from Sam that should he go to the dentist to look at the tooth that the calf broke when it kicked him in the jaw!
We got things sorted and got him to the dentist before he left for the weekend and then off to the hospital to check on concussion risk and other issues that may have come from it. He was checked over by the nurse and sent for X-rays (in case of a fracture) then we were sent back to the doctor to have him fully checked out.
I went in the office with Sam for a few reasons (one of them being that we are not fond of this doctor or the bedside manner but in our small town {and saddly even neighbouring towns} there is no choice of doctors -- you hav to use the one they 'gave you' basically)but mostly for moral support as he is not used to having to deal with these medical issues on his own AND lets not forget ... well... he forgets! So I was there to help him out.
Firstly, she didnt even look at his X-rays, stating that she could 'see he had no fractures', then when he told her about his BI and seizures and whatnot, she 'listened' (using that word loosely here) because as it turns my concerns were totally founded -- but that comes later. She said he had no concussion but it was good for him to come home with me so we could be there if 'anything happens' (now what would happen if there were no concussion or fractures?!) Take it easy this weekend and no work til Monday...
NO CONCUSSION--- yet he had blurry vision and a headache... ok... maybe I am over protective.... but really!?
NO FRACTURE -- from a glancing look and a bit of poking with her fingers... ok no screaming from Sam either... so thats good.
Sam came home with us, slept crappy, ate very little and looked like hell on Saturday morning. Swollen face, circles under his eyes and tired. But he got thru the day and did a bit of tinkering, admittedly he went for a ride on the dirt bike (which I was against) and then headed home to meet some friend for a movie intown (but no driving). Woke up feeling a bit rough on Sunday but felt better than Saturday -- so he must be on the mend. Then up on Monday morning for work...
dizziness, nausea, blurry vision and a general feeling of crap. NO going to work, calls me and i tell him to get to the doctor again and make sure she looks at the xray AND listens to you!
Luckily h is able to get in in the afternoon and this time she listens ... i think.
Her diagnosis is that Sam was having a delayed reaction to Fridays activities (concussion!?!?!) and he probably has an infection -- so med's so that it keeps a fever away and risk of seizures -- and no work for another 2 days! (updated count of days off now 4! Four days with no pay and Sam is stressing a bit from it...) Some things just never change! I thought we were done with doctors and them not listening to us about Sam and his BI. Doctors need to start listening to the caregivers about things - no matter how small or 'insignificant' they think the information is! We usually know a lot more about BI's, symptoms, new treatments, expectations... you name it we usually know all about it! JUST LISTEN DAMN IT and stop making us feel small and crazy! We 'specialize' in this, they usually don't.
**sigh** Ok Rant is over: Sam is starting to feel better and hopefully back to work tomorrow.
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!?
Sam has been home from Brandon for few weeks now and things seem to be on a more even keel. We can see he is working hard to not snap all the time but still has a few moments. He has also decided to start reducing his meds because he is tired of feeling like crap and so out of it all the time. We spoke with him about it and made it clear to him that there might be the possibility of seizures, the repercussions of seizures (not going for his learners or driving our equipment, possible no summer camp) and he said he understood but was still going to back off the val proic acid. He is now down to 1 - 250mg a day and we also learned he had stopped ALL morning meds. His tremors are not really subsiding but his energy levels have very noticably increased! SO much so that while we were camping he was throwing the baseball or football a few times a day for an hour or two! He has been out walking every morning or on the bike or riding the horses. He is starting to look like and act like our old Sammi.
Which is nice because we really missed him...
We should be seeing Dr. A in July or Aug and we will share all this with him then. Our hopes are to go a more holistic approach for Sam to not only the meds (possibly see if there is a natural med for him if needed) but with this mental state too. He needs to learn how to deal with stress and issues BEFORE they arise into such a place that is will induce seizures. And I am happy to report that Sam is totally on board with this all!
The 30 or so lbs he gained over the winter really have made a difference to to his overall physical look too. He looks better but is just out of shape, so he is working hard to get back into the swing of working out and exercise so he is in shape.
We are also still waiting to hear aboaut the seizure dog, which will be a big help if Sam can get his meds reduced. Then he will have the dog to help with his recognition of rising seizure possibilities. We are waiting on the next step which is the home assessment.
The bracelet campaign was AMAZING!!! SO far I think over $700.00 was raised but I will be going out to the businesses and picking up all the donation boxes this week and will have a grand tally later. Dennis and I think that next year we will buy the bracelets again but the money we raise we will keep to our TBI group and they can decide where and how to spend the money to help spread awareness. We have really struggled with the MBIA this last while. There have been quite a few instances where I seriously have regretted having the donations given to them -- but I did say I would so I will honour it but not again. LIVE and LEARN!
So Sam has been at the CATC (Children and Adolscent Treaattment Centre) for 5 days and was able to come home last night, for the weekend but he has to go back on Sunday evening. He has met with all the doctors and psychiatrists and counsellors. His days are busy, spent with one or more of the professionals, doing school in the afternoon, working on booklets to help deal with things and general socializing. He says he is getting a lot out of it, and i guess this weekend is a trial run.
If we have any issues or problems we can call the CATC and take him in -- I doubt that will be necessary. He seems much more relaxed and more of the Sam we had before his accident almost 4 years ago. But then while he is at the centre the stress of home and school and family is not there with him.
Dennis and I spoke with the other kids this week too while Sam was not here and we explained to them that we will all be going for counselling and that they need to be open and honest about their feelings toward us, Sam, each other, this situation. We had a good talk with them on Thursday night and I hope we were able to convey the importance of this... time will tell I guess.
Something we did talk about (that we never had before) was who felt that since Sam's accident they were missing out on things -- when it was all explained and pointed out about we were talking about they realized that no one had been missing out on things really. No more than anyone else in any household that runs on a budget... the kids all still got football, cadets, gymnastics, movie money, lunch money, meals out, new clothes, new music, ipods, etc. There has been a lot of 'poor me' going on with us all... and we just reminded the kids of all of these 'blessings' and how we need to focus on what we have and not what we dont. We also pointed out that Sam has to do this also -- he needs to focus on what he CAN do and not what we can't. We tried to get them to see a bit of the last year thru Sam's eyes and how the loss of his getting his license, not being able to go to friends houses, play hours of video games, being tired all the time, feeling drugged out, having trouble walking and talking and having to spend almost everyday with Dennis or I -- is most definitely not a walk in the park. Basically, Sam gets 'special treatment' but it is not a treatment that any of them would want because it means that they lose out on everything else. It was amazing to see them start to realize what Sam's days are like and how if they had to spend as much time with us as Sam does ... that it would suck.
Even Isaac had a change of attitude once we spelled out how Sam spends his days at home and how his days are now at the CATC.
We got a phone call from the CATC on Thursday telling us that Sam's val proic med levels were high (they should be between 50-100) and he was up at 123.5 -- so they reduced one VP a night and the next day they tested and he was still 115. Dr. M (from the CATC) couldnt get a hold of Dr.A (epileptologist) as he was away for a few days and so we arent too sure what the plans are for things yet. Hoping Dr.A will say to reduce more VP -- crossing fingers that then Sam will be less tired and feeling sluggish, irritable, etc. (maybe we can get him off them altogether!!! .... wishful thinking .... )
For now our family is playing a waiting game on doctors and the centre and we are taking everything one day at a time...
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...
It always amazes me how small my boy looks in these damn hospital beds. Sammi is at least 6'1" yet when he is in the bed he looks so small and frail.
Yesterday I was up earlier than usual and thot I would start my day 'relaxing' watching the mornig news (something I dont do very often anymore as our TV is in the basement rec room) with my coffee. I came up to the main floor just before the kids usually wake up and sat down to go over my list of 'to do' for the day and Josh came down the stairs saying Sam wanted me.
I was not alarmed as when hSam went to bed he was in fine spirits and healthy .... so up the stairs I go and find him not only sweating as if he had been working out and the bed sheets soaing with sweat but he was red and a bit 'outta it' (note to self: BUY A THERMOMETER!!!). Dennis and I got him in the shower, 2 tylenols, a litre of water drank and back to bed. Josh told us that he had heard Sam get up and down all might (I had too but assumed he was getting up to go to the washroom because the boys had drank some gingerale before bed -- and I didnt hear any throwing up or calling for us...) Sam informed us that he was up because he kept feeling like he had to pee but couldn't.
This made me call the hospital.
They recommended that we bring him in as he is at risk for seizures.I took Sam to the hospital and they took his temp and it kept fluctuating up and down for the entire time we were there, but we got him cooler than when he first woke up. They did got a urine sample from him and blood work to find that he has a severe bladder infection (his white blood cell count was at 19000 and it should be around 11000) and his urine was full of infection. The next job then was for the medical team to find meds to get rid of the infection that would not interfere with his seizure meds...
Thankfully they found one and with the meds and rest Sam will hopefully be noticeably be feeling better by Saturday noon-ish and without a fever. If the fever persists and he is not able to pee or isnt feeling better we need to take him back to the hospital.
Praying he is better today (at med time he was not fevered and said he was peeing a bit better so that made me happy) and continues to get better -- because did I mention that Dennis and I have a holiday booked that we leave for to Jamaica on Sunday? Not going to be able to go or relax if I know our boy is still sick...
... somedays I wish I could turn back time, back to the summer of 2008.
I would have had the boys come home the day they were initially expected to and not agree to another week.
But I can’t so I have learned to keep moving forward.
This past week with Sam had been the perfect storm... he was not sleeping well, he forgot to take his meds TWICE on two separate mornings, he was not eating, he was argumentative and over feisty. We all saw this and the penny dropped a little too late.
We were trying to talk to him yesterday and he said he was leaving. He packed a bag and left. No meds, no phone, no wallet, no plans on where he was going. He just left. He hugged us and even tho we told him that we wanted him to stay, that if he felt he had to go to please let us know where he was at. He agreed...
.... and he left
.... on a stormy, snowy, windy day
we watched him walk down the driveway, turn south and then disappear. we called my mom to see what direction he was going but not to call to him. Then Dennis got in the car and followed him from a distance.
Sam walked for quite a few miles and then for whatever his reasons were he turned around, Dennis stopped the car and Sam got in. Dennis told him he loved him and Sam said “I know” and that was it.
Sam came home, went straight to his room and crawled into bed.
The last year or so we have been focusing more on the epilepsy stuff as it was more ‘something we can try to fix’ and we let that sideline the TBI issues -- and it all came to a head yesterday.
Sam had the mother of all brain injury moments. The week before his brain was basically telling him that right was wrong and wrong was right. The brain would not turn the switch back either, no matter what we had said or did. His brain told him yesterday morning that no one cared about him and he was better off going... so he left.
I don’t know what we can do in these situations other than let him go and watch from a safe distance for him to realize his brain is lying to him.
We explained it to Josh, Hannah and Isaac as if he had had a seizure but without the shaking. His brain rewired itself and he had to fight to get it straightened out. I told them that they know how they struggle with everyday issues and growing up -- well Sam does that too but he also has his brain fighting him AND he is on a lot of medicines for his epilepsy. It is work for him to get thru each day and none of us can even begin to know how he struggles to stay ‘normal’.
I am not sure if we handled it right or not. I do know that my heart broke as I watched him pack his bag, as he told me no one cares about him, how he cried as he left. I sobbed when he hugged me and told me goodbye and I held him tight -- then I let him go. I knew what was going on and I knew there was not a thing we could do for him but pray....
so I texted and called a few friends to pray for him and I sat and prayed
His brain is working the way it should... for now.
But it will happen again and again thru out his life. His brain will rewire itself and wrong will be right and right will be wrong.
I just pray that we find the tools for him to use to do his own ‘rewiring’ before it gets to this point again.
... isnt that every Monday!? Ok I am joking... but only partly
for us the weekends are always such a hassle. Sam is home and every noise or action in the house tends to irritate him, which will result in him being short tempered and wanting to fight. This weekend was no exception.
Things have been ok but there has been an underlying grouchiness that has been brewing since around the end of November. For someone with a TBI (or at least with MY survivors) the excitement and stress (both good and bad) of the Christmas season seems to not bring out the 'jingle-jangle-share-the-love' kinda feelings. There is too much noise, too much visual stimulation, too much food, too much action, too much energy in the air, to little sleep, too little slow paced routine... just too much of most things and not enough of others.
Come mid-November Sam is getting tired with going to school, football season is over, cadets each week (and quite a few weekends too), trying to keep up with everyone else in the house and those people that come and go in the house. He is not sleeping well and his stress levels are rising and he is a ticking time bomb for emotions.
While everyone else looks forward to the 2 weeks of holidays away from school and the rush of life and routines, they can be 2 weeks of stress for others. In our house, we have to be sure to keep the kids somewhat on a routine for Sam's benefit. They are not allowed to sleep past 9am, they have to be in bed by 11, we still eat our meals together as much as possible, the snacks and treats of the holiday are monitored (so sugar levels do not hit the high levels which result in not just the rushes but the major crashes ...)
But even with all this being done (and you can bet that no one under the age of 17 is thankful for this scheduling and monitoring) there is still that under currant that is humming in the atmosphere that Sam picks up on and runs with if given the chance. Where as one teen will laugh have fun with other friends or family members, Sam will go into overdrive in order to try to 'keep up' with everyone and not be able to gear down and get to a normal tone or speed. This results in family and friends thinking Sam is 'trouble' or 'hyper active'. They dont see that he is basically just trying to survive each day or moment at a time.
Fast forward the holidays to Jan and the first week back to school. What happens then? Well, teachers and students are done with the holiday stress and have moved onto exam stress and fighting to get back into a regular routine. What doesSam feel? Stress, overwhelming stress... nothing much more than that. this causes him to become tired, fall behind in some areas, which causes him to feel stress, then he will become more tired and fall behind more... it is a vicious circle.
This all brings me to Blue Mondays via the weekends... Sam gets home Friday nights trying to unwind and relax but has to be surrounded by 5 other people. If he has plans to go out with friends (the oscar award winning Sam appears then) then he is ok to a point-- when he has to come home again and life is still waiting for him. I have people wondering why are not here or there and I cant tell them it is because Sam is having a melt down, or he is stressed (which would result in a melt down if pressed), then add to all this mix one of the other 3 kids in our house and all of their issues (and yes drama...)
It is mornings like the one we had today that makes me wonder "have we been handling all of this ok" and "is there other things we should be doing" and the big one"does anyone ever listen when Dennis and I talk about how life is for us when they are all demanding we be there/here/anywhere/somewhere"
Sam's accident may have been over 3 years ago but we are all still living it daily.
the other night we all sat around watching NCIS and it was in the final 15 seconds of the show. (please forgive me for not remembering the name of characters -- we were/are just starting to watch this show)
Mark Harmon (the 'head' dude) just finishes telling the female character (Kate I think her name was) that her job of protecting him is over (after she just took a bullet for him in the chest-- but was wearing a vest) ....
even in typing this my heart is pounding and i am tearing up...
all of a sudden she is shot in the head
i was so shocked at it that I covered my eyes and started crying,
uncontrollably, sobbing
like i had a vested interest in the show from watching it for months
like it wasnt a show at all but real life
I had a sick feeling in the pit of my stomach
my head was swimming
my kids quietly filed upstairs as Dennis hugged me
Sam sat there and watched me cry (which I learned when I finally moved)
my family knows that I am not one to watch shows with killing and shooting in it (minus the old John Wayne movies) and especially after Sam's accident I will not watch certain movies. I can't -- even in knowing it is a movie and there is no real harm to anyone.
This was so totally out of the blue, such a shock.
I felt incredibly silly after and I still do,
but all I could think about was Sam and the whole scenario played in my head of the first 2-3 days.
Then I could not get the whole shooting on the show out of my head. I still can't...
We have been dealing with some stress again in our house due to teens and "relationships", Christmas is just over and the New Year, there is some other extended family stuff going on.... it might just have been too much for me.
I had to take a second look when I got the paper work for a Seizure Response Dog for Sammi!
21 pages
TWENTY ONE
That is a TWO and a ONE!
Not at all daunting, or over whelming...
Not one bit scary....
ok I lied, just a tad bit daunting...
Luckily there ARE pages for the doctors to fill out, but for the most part it is all down to me! I have the doctor parts done and most of my parts, now I still have to find 2 character references, get the school to sign off on it (but I dont think the school will be a big deal as by the time Sam would actually get a dog he would be done or darn tootin' close to being done)
WE started looking into the seizure alert dog shortly after Sam was diagnosed with epilepsy. We felt that it was an avenue to travel and if it is what is to be then God will open doors. Our thots are that by the time the whole process is done and thru (or close to it) Sam will be getting ready to leave home to go to college or university. A dog will be:
1.) a help to calm our nerves about Sam and his seizures when he has one
2.) there will be help for him if he does
3.) the dog can be trained to do a number of different things from getting a phone after a seizure for Sam to call for help, bark to alert ppl that Sam is in need, go for help, etc
It is a long process and after talking with the people at theLions Foundation of Canadawe felt that it was most definitely something to look into. Then once the doctors filled out the paper work on their part, they felt it was best too. This will be an almost 2 yr process from when they get the paper work at the foundation. We will have to undergo a house/home evaluation, and if we pass it then they will find a pup for Sam. This dog will be trained and once it is ready to go we will travel to Oakville Ontario to learn how to work with the dog. Then we are sent home with him/her. We are all excited about this new endeavour and cant wait to get the papers sent away and wait for a response from Ont. The service is all free to us (including the trip to get the dog) but there is a place for donations on their website. If you feel so inclined please stop by the site and see if there is a way you can help!
well that is what some people (teens most likely) would call it...
BUT...
I am not sure if it was or not! Not on Sam's part, on Dennis and mine thot process of the gift... or rather the hope for the plan of its full potential!
Josh, Sam and Grandma checking out the small pieces
Dennis and I bought Sam the Pirates of the Caribbean"Queen Anne's Revenge" lego set for Christmas (not the Star Wars ones he was hoping for and most definitely not really in our budget but we made it work). He was very happy about it...
TA-DA! Sam with the Queen Anne's Revenge
BUT...
Sam started working on the ship and completed it all in one day-- over a 1000 pieces
BUT...
Queen Anne's Revenge (with working cannons!)
he also completed it with multiple conversations, games, food, dogs barking all going on around him. Not once did he lose his patience with us or himself.(another accomplishment!!!We were so proud of his dedication to this project and of the determination to ignore all the outside distractions!)
BUT...
our hopes for this to be a therapy for him over the holidays was completed in less than 12 hours...
SO...
now where do we go from here!?
I am hoping we can maybe try to get the more complicated lego sets when we can make it work in our budget.
I will keep my feelers out for used ones -- if anyone hears of any going please let me know!
We wish you a Merry Christmas and a very Healthy and Happy New Year! We pray 2012 is filled with love, laughter, family, friends and all of God’s wonderful blessings! Thank you for all your wonderful and encouraging support since 2008!
Love Dennis and Jodi
xo
Merry Christmas! Thanks to everyone for their support this year with my brother. We all appreciate the support. Have a happy new year!!!
Josh
Merry X-mas everybody! Thank you for all you support that you have given our family these past few years its been very much appreciated! Happy holidays and have a great christmas and a happy new year
-- Sam
Merry christmas everyone! Hope u all have a great new year!
Isaac
I wish you all a holly jolly christmas and a happy new year and thank you all a lot for
all the support you have gave as through out the years. Merry Christmas and I hope
I had both Ike and Sam to the doctor yesterday and it was confirmed that Ike is out of sports for a minimum of 6 months. That means no spring league football -- but hopefully he will be ready for Fall league. If he has any major headaches or blurriness of vision again we are to get him straight to the hospital but so far we are doing great!
They (medical staff, hospital whoever it was) got the results back on Sams nail issue. He does have a fungal infection but because of his seizure meds he will not be on anything for the infection (this is what the doctor is telling me). This will be due to the fact the fungal med is 'worked' by the liver and Sams epilepsy meds are too, so that is too much for him and the fungal meds are about a 16week round of drugs.
I am all ok with this because we have been treating the infection with straight tea tree oil and it seems to really be helping! It isnt spreading past the 2 toes and 3 fingers! YAY! It is stinky but amazing stuff.
Today we are 16 weeks seizure free!! I am so happy for Sam! Things are going in a good direction for him! (and for us as we are all affected when he is seizing) Maybe we can say that we are finally ...after over 3 years of craziness making our way out of this tunnel and heading towards the light!!!
Christmas used to be the “most wonderful time of the year” for me, but after my Dad’s accident it is just a sad reminder for me that my Dad is gone. Ambiguous loss is huge for me starting around mid-November.
I try to be upbeat and cheery for the kids and Dennis but honestly it is hard. My dad was the best at getting me into the Christmas spirit. He would call and sing to me, he would make plans for the holidays, he would make sure that the gifts he bought were just right for each receiver. He put so much thot and effort into gifts and I am proud to say that it is a ‘gift’ he has passed on to me that I am trying hard to cultivate this legacy in my children.
With this all being said, I struggle with gifts for our kids. We try to get them one thing that they really want (their lists are very short...for example iPod docking/charging station, art supplies, fuzzy socks or Ugg style slippers--this is the list of 3 kids!!!). This year we are having a big problem with Sam’s gift.
He is asking for lego and not just lego lego, but he wants the more complex lego sets -- star wars, buildings, vehicles etc. Now these aren’t hard to find but the price they want for them is hard to dish out! We are talking about upwards of $155... sigh. I have checked out amazon, kijiji, ebay and other local bargain sites...nothing- well nothing in our price range ...
The real kicker is that Sam asked for these kind of sets so he could use them as BI therapy. It would help him to follow instructions (problem solving) and because it is lego (and not models which require glue and waiting time) he can pick it up and work on it and walk away when he is tired or frustrated.
A bit of back history here: Sam used to be the kid who would do plane models and other things without a thot... now they have too many minuscule parts, steps that require 5 minutes of ‘modelling time’ followed by hours of waiting for glue to dry. Also the smell of glue makes him nauseous. Our hope (Sam’s included) is that he can get back to that hobby one day...but right now lego is more of his level, but he is waaaaaay beyond the easy ‘kid lego’.
I had put a ‘wish’ on a local website in our area asking for lego sets that someone may have had for sale and if they were in our budget we would maybe be able to buy them. I didnt go into details about why we needed wanted them I just stated that we were looking for our son and that due to his medical issues we spent $250-300 month on medication and 3 other kids to buy for ... so our budget for gifts is not the highest... to make this short there was no responses to my wish, so I deleted it.
I am not making this post for sympathy or anything. My hope is really that someone can help us with ideas to help Sam with his therapy idea but more in our budget. We are at a loss of what to do! Both Dennis and I are so proud of this move that Sam has made to work on this on his own, but it is heartbreaking to know that now we are not able to get what he wants. Sam is ok with not getting lego (we have come to him and tried to find other ways for him to work on therapy) but sometimes you just want to be able to give them what they have asked for...
It is my hope that people who would read this would already know that I would make this wish for any of my kids, it just so happens that... so it seems... once again it is about Samuel .
My Christmas wish is to find one set that Sam would like for a price in our budget or some ideas for me to try to help him to work on his therapy from a different angle...
so what do you get when you cross a TBI survivor student, his high school teachers and the orginal psych evaluation from 2009?!
ABSOLUTELY NOTHING!
yep, seriously. nothing except an extremely frustrated and pissed off mama!
Sam is falling in the 'normal/average' range for most of his evaluation, but in one area he is actually below average AND that is BELOW where he was 2 years ago! It is in the math skills -- which is his organization and problem solving skills. hmmmmm kind of what we have been telling the school since ....
ummmm....
I dont know DAY FREAKIN ONE!
We have been telling them that AND giving THEM the information to help him with this. We have emphasized (or I thot we had) that Sam needs to learn this NOW or he never will. Sam has an iPod and an organizer to use and we just asked that the teachers help with reminding him to use them. Once it gets into his long term memory it will STAY THERE! sigh I am so frustrated! So basically if Sam had been helped with these skills up until April 2011, they would have been in his long term memory and he would not be where he is now!
We knew what they were telling us (meaning it was not a surprise since Dennis and I see it here at home) but we were hoping for at least an IMPROVEMENT not a backward step! Whatever happened to the saying of 'no child left behind'? I am not naive to think either that my son is the centre of the teacher world, but when a parent GIVES you information and is working WITH you to help THEIR child... wouldnt you at least TRY to work with them!? Then teachers paint your kid with the "they just dont seem to care" brush! No kidding-- cuz at this point he is starting to not care after 3 years of this from teachers! He started out with a "lets get movin and work" attitude and he does every year when he starts school, then he starts to pick up on the feelings and ACTIONS of teachers. SO he starts to quit and give up! This is TYPICAL teen behaviour BUT is enhanced or aggravated by the fact that there is:
1.) 3 fragments of bullet in his head
2.) seizures
3.) seizure medications
Initially, when E(psych student) and Dr. D(psych) told us the results my first reaction was "So I basically have wasted the last 3 years of my time looking for the info to help the teachers with their freakin' job!" I know it is a totally selfish thing to think but there you have it! Why did I bother spending all that time looking for, printing, getting to the teachers if they were not going to use any of it anyway!?
Like I said to my gf Marianne -- it was yet another 2x4 to the head in the dark...
Burnt out?
Me?
nope?
not really...
well...
maybe a bit...
yes I am tired...
but isnt everyone?
I know I need to take time for me...
but where do I find it in the day?
I am trying...
really...
I read an article the other day about caregiver burn out.
I never gave it a thot...
but now I am out of commission ... to a point
I am on the couch
leg up on a pillow
and told to 'rest it'
I have stretched or tore (something) to my right ACL (which was reconstructed a few years ago) and it looks like my left one could be on its way out too.
After reading the article/letter it was like walking into a brick wall.
This is our life.
Both Dennis and I work hard with the farm, the kids, the kids activities, our parents (there are 4 separate groups of them!), and then add in there that 3 of our members are brain injury survivors.
We struggle with Sam and his issues daily, I do what I can for my dad but thankfully there is the care home to really work with him. But then there is Dennis. Most people dont realize he has an injury but he does and he is so much more like Sam then he wants to admit. I have trouble talking to him about his issues because he IS so much like Sam. Telling him this tho is almost not an option.
So I keep on going (kinda like the energizer bunny)
now I am on my chair with my leg up...
I am physically done (for now) and emotionally I am at the end of my rope and that proverbial knot is slowly starting to unwind. But there is no where or no one for us to turn to for help. Our family options are nil. We went to them a few months back and got no where... so we keep going. We have no really close friends either to ask for some help. And everyone is busy and has their own things to deal with so why would I burden them?
So...
I keep going.
I feel resentment from my household now that I am suck with my leg up. I feel like they are upset because I am not able to do what my 'job' is as caregiver. Even tho I do what I can (and to be honest I do a lot of what I am not supposed to do -- cuz if I dont who will!?!) their resent meant and attitude make me somedays want to pack it all in and do a run away and let them all deal with it ALL on their own.
This is how I feel a lot these days... if only it would work...
Sam has been on the topomax for almost 2 weeks and I can honestly say that I hope that things start going in a more family friendly direction. We are not sure if it is the topomax on its own or if it is any combination of the topomax, keppra and val proic acid.
Sam's moods have been extreme to say the least. He will be fine one minute and then the next he is off on a tirade and is lippy, then the next moment (and this is the one that really scares me) he is silent and sullen. He looks like he is just ready to lay down and sleep forever, never to get up again. I worry about this side effect because I know this feeling.
I fight it daily.
I dont know if you ever stop being 'bi polar' (or manic depressive as they used to call it) or if you just get accustomed to learning to live with it or better at hiding it?
But when Sam gets in that mood I just want to cry myself. He doesnt want to talk, eat or do anything...
Today I will be spending my day phoning the neurologist about these side effects, a sleep lab letter we have received and a few other things. I will also be phoning the neuropsych about when we are going to see them and how we are worried about these side effect (so please do not wait on getting in to see us!)
My stress level the last few weeks has been astronomical and although I have tried to relax, I find I can't. I am so tired, feeling lost in a pool of information and LACK of information, self doubt, self pity and a pile of other things that I dont even feel like me. My cousin was out this weekend from Ontario and we went out on Sunday morning with our cameras to take some pictures and I couldnt find any relaxation or creativity in it. All I wanted to do was cry.... which is really all I feel like doing most days anyway.
I honestly feel so alone in this all. Dennis is a help but only in so much as he helps with working with Sam. I cant tell him how I feel because the way he handles stress and things is much more different than me. I need to cry it out and then I will think it out and try to figure things... but I cant even find the time or strength to actually have a good cry. It is stupid really....
I go to curves to workout and then dont be smart at all on my eating (not that I eat alot of junk, I either eat or dont eat)
I am also mad. Mad at medicine, doctors, Dennis, family, Sam, myself and I am ashamed to admit it God. Some days I just ask "why" ....
Why did you give this responsibility to us?! Why did you do that when I dont handle this well?! What am I to be learning!?
WHY!?
I know there is a reason for it all... I just wish I knew why...
I know today is a jumble of thots and crap, but that is my head these days ....
