~♥~VisibleAngels~♥~

Is that Isaac Ginter on page 3!?

2012-02-02T17:00:00.000-06:00

Kaiten Critchlow/Neepawa Press

Kelwood resident and NACI Grade 9 student Isaac Ginter peruses “Liam's Magic Rocket”, a recently published book featuring his illustrations. The Ginter family connected with the book's author through an internet group for Canadians who have been affected by traumatic brain injuries.

Kelwood youth has illustrations published

By Kaiten Critchlow

Neepawa Press

A Kelwood youngster with dreams of getting into the graphic arts industry is getting an early start in his illustration career.

Isaac Ginter, a Kelwood resident and Grade 9 student at NACI, has had his illustrations published in a book being sold worldwide titled “Liam’s Magic Rocket”. The book is inspired by a child’s questions about God and was written by Daniela Aum, a Toronto-based author.

Aum initially wrote the book after being “stumped” by a child’s questions about God. Shortly after putting her thoughts on paper, Aum decided illustrations would add to her story and sent out an open invitation to youth to enter their drawings.

In the meantime, Isaac’s mother Jodi had been talking with Aum through a web-based group for Canadians affected by traumatic brain injury. Isaac’s younger brother Sam is a traumatic brain injury survivor, just as Aum is.

Aum passed on the invitation to Isaac and he decided to enter an illustration for one page of the book. After Aum saw it she opted to ask Isaac for a few more of his drawings.

“At first I wanted this book’s illustrations to be a compilation of several children’s illustrations but there was no cohesiveness and it just didn’t work,” Aum said in an e-mail interview.

“Isaac stood out for several reasons. Besides having great technical skill, his work has a clever, sometimes comedic innocence to it that really melted my heart.

“The way he visually translated the message was sweet, touching and a few images made me laugh and tear up at the same time.”

When Isaac got word he had been chosen as the sole illustrator for the project he couldn’t believe it.

“I was excited but kind of stunned at the same time because I didn’t think what I drew was that good,” a humble Isaac said.

The young illustrator spent his spare time over a three-week period putting together more illustrations to complement Aum’s story. In the end, the author said Isaac’s final pieces were even better than she anticipated.

“He did a fabulous job and with practically no direction from me,” Aum said.

Isaac’s mom Jodi is just as elated about her son having his work published and the proud mom has already purchased seven copies of the book. Jodi said she hopes to donate copies of the book to Neepawa’s public library and H.M.K.’s library as well.

For anyone wanting to see Isaac’s work in print, a free online version of the book is available for viewing at www.blurb.com/books/2891936. The hard copy of the book can also be purchased from the site at-cost.

Jodi also keeps a blog at visibleangels.blogspot.com about her family’s journey with brain injury since her son Sam’s accident.

Isaac plans to become a graphic artist specializing in video games after high school.

It's 'Blue Monday'...

2012-01-16T09:26:00.000-06:00

... 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.

Still fresh

2012-01-05T06:34:00.000-06:00

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 dont know, but it was just

too much

Not quite the way I was wanting to start 2012.

How many!?

2011-12-30T10:29:00.000-06:00

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 the Lions Foundation of Canada we 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!

Epic fail? BUT...

2011-12-26T16:50:00.004-06:00

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!

From Ours to Yours...

2011-12-18T10:15:00.000-06:00

Our 'Ugly Sweaters' for a Christmas Party

B-Sam, me(Jodi), Dennis, Josh

F-Hannah, Isaac

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

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

you all stay safe this christmas year.

- Hannah

Reasons to ☺

2011-12-09T09:52:00.000-06:00

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!!!

My Christmas Wish

2011-12-08T12:56:00.004-06:00

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...

Refusing to change it...

2011-12-04T07:59:00.000-06:00

bubbles... they're all gettin' one

.. the tag line in my blog I mean. I will NOT change it to 4 or 5 or 10!
I absolutely CAN NOT handle another survivor in my house!
So I am putting everyone in bubbles ... forever.
On Friday Mom and I were in Brandon doing some shopping and I get a call from the school "Isaac was in gym class and got an elbow to the head in basketball. His vision was blurred and he was dizzy, could I please come get him and take him to the hospital"
My first thot after the initial "you've got to be kidding me" wore off was "why the heck didnt THEY take him to the hospital!?" Our high school is next door to the hospital! But I called Dennis and he went and got him.
Turns out he had a concussion and since it was his second one in such a short time (he got one during football season) that he is out of sports for 6-12 months and in gym he is only allowed to do sports that he is not at risk for head injuries with... which would be what!? Who would have thot an ELBOW would be the culprit!?

So big 'ole body bubbles is what is one everyones list this year for Christmas... says me.

it never rains but pours...

So what do you get when...

2011-11-24T08:31:00.003-06:00

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 Erica and Dr. Ducharme 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...

Butterflies are pretty in the summer...

2011-11-23T05:41:00.000-06:00

... not when there is snow on the ground and they are in my stomach!

off to Winnipeg today to see the neuropsych for the evaluation results (man too early today it took me 5 minutes to think of the word results...sigh)
I am nervous about this and not too sure why I have butterflies in my stomach about it.
I would love to tell Dennis to go in without me but first of all they want Dennis, Sam and me there and secondly I would be a wreck by the time Dennis and Sam got home.

Time today will tell I guess...

B.I.M.'s, iPods and teendom

2011-11-19T07:03:00.002-06:00

B.I.M.'s-- Brain Injured Moments
iPod -- something we hope will help Sam with his B.I.M.'s, be a source of relaxation and help with him to remember meds
Teendom -- something i hope I am going to survive with our kids

We gave Sam back his iPod this week but there is no Safari on it (to keep him from getting into trouble with it), there is very few games on it (to help keep him from becoming obsessed with the game and iPod), and there is a new Sticky note app on it. This app is for both Dennis and Sam to write their B.I.M.'s on it thru out their day. Right now it is just the free app but I am thinking of upgrading it so there is alarms and other things for them to use.

Sam lost his iPod this summer after we had found him using it for things that were not necessarily were best for him. So he lost it for about 4 months and now I have blocked things and we will be checking in on it frequently. (Yes we are those kind of parents-- technology, the internet and kids is a scary combination --so we frequently check at our kids browsing history, cell phones, FB accts...)

I am praying that it really starts to work with Sam and in a positive way.

Lately we have been dealing with not just B.I.M.'s with Sam, but we also have been having major issues with teendom and the other kids. I have been thru every emotion and frustration you can imagine this week -- all from the 'comfort' of my couch... We have had some very scary moments this week and I pray that things have now changed a direction that is heading in one where people (insert our teens names here) can see that we are here as parents to help and guide...It seems today that parents have so much more to have to deal with than in the past. We have to 'compete' with tv, music, society and technology -- and most of this stuff is gearing kids to think that they know better and dont need family or anyone to get to where they think they need to be.

Stress is huge in any parents life and I think this week we have had more than our share I think.

... here is to a better week next week.
... here is to ALL our kids knowing we love them and want only what is best for them.
... here is to a week where I dont want to run away and not look back

I thot burn outs were for light bulbs?!

2011-11-12T08:46:00.000-06:00

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.

But I won't ...
where would I go?

Our home away from home...

2011-11-11T07:04:00.001-06:00

A few weeks ago(and since the beginning of this journey), Sam and I were in the city
for 4 days some appointments. I said I was going to have a post on the wonderful
Ronald McDonald House that we stay at and so here it is!
This house is gorgeous, spacious, functional, safe (you need to have security cards to get in)
and most of all it is a relaxing atmosphere to visit with other parents and families.
There is a most definite family feel when you stay here.

This is not my own photo but it is the actual house we stay in!

Trying to keep Sam awake so we could go to his
EEG...

The time we got up so Sam could have his EEG done --
under 'stress' less than 4 hours sleep...

One of the family rooms -- tv, pool table, air hockey table,
wii, xbox, etc

another of the family rooms(this area is being redone)
& part of the dinning area

The dining area and kitchen

❤My favourite spot at the house ❤--
the coffee area ☺

Our room (facing south)

the North side of our room

the West side of our room

the front entrance by the offices
The wall reads
"Home is not where you live but where they understand you"

The family room at the
Ronald McDonald Family Room at the Children's Hospital --
where families can go while at the hospital. You need to have a child in
critical care or be referred by the Ronald McDonald House
to be here.

Looking out to the south...
There is tv and computers with internet.

The eating area -- you can bring your own food and use the kitchen
area to prepare it and clean up.

The community kitchen and one of the MANY MANY
lovely volunteers that help keep things running,
and help where needed!

There is daily baking done by volunteers for families to
enjoy while in the Ronald McDonald Family Room!
Delicious!!!

Both Ronald McDonald areas are filled with amazing people who are there to listen and help where they can.
If you have time stop by their website HERE to see what they are up to and if there is any way in which you can help! It can be anything from gift cards to toys, groceries to DVD's... just click on the donate button and find WISHLIST! Or call them and see what you can do. This link is to the Winnipeg RMH, but you can find your own local one too and see what is available for you to help with!
You never know when you or your family or friends may need to use this wonderful service! I know we never thot we would or that we would still be needing them...

what is this new feeling?!?!

2011-10-29T09:20:00.003-05:00

Not sure if Sam’s sleep last night(Thursday night) was due to the lack of it the night before or the bed or what, but he had a terrible night -- or so I thot! I was woken by him crying out and thrashing in his bed a few times ... so maybe it was more that I had a long night. He doesnt remember anything so it makes me wonder if he was having seizures -- just the convulsions tho. Sadly, I was so tired I never thot to grab my phone to video anything.

There was also someone who was throwing up alot last night... in the elevator and all over the bathroom... not a pleasant smell to greet you at 5.45 am when you are awake...

This morning (Friday) Sam was to be at the hospital at 8.30 for blood work (med level check) but I let him sleep until then. While he was waking up I was cleaning our room up so we could be ready to leave when his appointment is over this afternoon.

This has been a very long week. we have had lots of great news and some late nights, but I can honestly say that of ALL the trips we have had and appointments we have been to this week has been the BEST EVER! As I sit here in the Ronald McDonald Family Room at the hospital, I feel so much lighter about a lot of things from this week. I dont remember when I have last felt like this. I cannot begin to explain how the doctors (both neuro and psych) have helped to make me actually feel confident about what they had to say about Sam. Usually I feel a quite bit of apprehension when we are leaving the offices, but this time I felt light and smiley... there are tears of relief and happiness sitting just behind my eyes but I can’t let them out. I still have some nervousness -- almost ‘is-this-too-good-to-be-true’ nervousness. I am working hard to not focus on that feeling, because I like this other new one better.

I have had quite a few friends ask me about the Ronald McDonald House, so I am taking pictures of it (and I will do so also of the room at the hospital) and I will do a posting about it soon!

you do the math...

2011-10-27T20:11:00.000-05:00

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

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

The main one....

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

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

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

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

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

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

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

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

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

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

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

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

Silver linings...

2011-10-14T07:35:00.000-05:00

After this 'hellish' week we have had with Sam and topomax, neurologists, stress and the drama... we have a silver lining!!!!

It is looking more and more like Sam's depression, mood swings and quietness were mostly down to the med's! Even HE is noticing a change now (it has been since Tuesday that we stopped the topomax). He is smiling again, he is pleasant, he is joking a bit.

When he was on the topomax, Sam never noticed anything different, and now he does!!! Thank GOD!!

We are still struggling with other things right now but at least that one is over! The war is still raging but we have won a battle or two this week!

There is a lot to be said for bedside manner

2011-10-12T09:00:00.000-05:00

...now if only 'our' neurologist had some! (and yes I said 'our' but I am using the term loosely)
Dennis and I had wonderful second opinion phone call last night with Dr. Bourque from Winnipeg. He helped us to understand what all might be the reasoning behind the sudden "you are being transferred to pediatrics' call we got yesterday.
Dr. B said that it could be that Dr. Y got a slap on the wrist from the EMU clinic for whatever the full reasoning was and is stepping us backwards to ped's because if when they send us to another clinic it will possibly be Dr. Y that we deal with (the epileptologist). Now we also learned that the reasons behind seeing Dr.Y are because Sam not only has epilepsy BUT he also has a brain injury (no kidding!?) so it complicates things a bit. Dr. B told us that he has met with Dr. Y before and has found him to be kurt and brusque so THAT was not our imagination (It could stem from personality to the fact that it is more of a social style from his native land of Russia.)

Anyway, we found out the answers to many MANY questions that have NEVER been answered for us in 3 years! This lovely doctor called us at 9.30 at night from his home, gave us his home number and told us to keep him in the loop. If we can find out the name of the ped neuro. that we are going to be seeing he can try to pull a few strings and see about getting us fast tracked with them... but he said he honestly figures that we will be hearing from someone in the next week or so. (please pray for this!)

So basically after our initial phone call yesterday at 8.30am-ish, we went from wondering what the heck!? until 9.30pm last night where we were smiling and saying "ok, we get it. Still am not impressed with Dr.Y but we will live with this for now..." A lot can be said for bedside manner! You would think that they should teach bedside manner in 'doctor school' and you have to stick with the course until you get at least 80% or better in it. Just think of the stress from patients, families, friends, co-workers and everyone that could be elevated if ALL doctors would take 5 minutes to actually explain WHY they are doing something instead of acting as if they are God.

So yesterday was not a great day and it was not all related to Dr.Y...

Sam didnt start with a good morning (thank you topomax). Since this med was 'up'd' to 2 pills a day there has been a NOTICEABLE change in Sam's demeanor, so much so that I have been worrying about him. All this medicine, epilepsy and lack of quality of life I think are taking a toll on Sammi. He has been depressed and quiet, withdrawn and sullen. Major (more than before topomax) mood swings... it had been a very tough 5 days on the double dosage... so when I told Dr.Y he said to stop taking it. YAY!!! It is not working for him so get him off it! SO i spent time already this morning on the phone with the neuro psych trying to get our time with them arranged -- hopefully hear about it this afternoon!

I spent most of the morning yesterday, til 2.45 on the phone with various people, doctors, answering machines, etc., so when I went to town for football I was intending to go to curves to work out. Then I was going for coffee with a friend. But for that to happen I had to 1.) be relaxed to work out and b.) leave the house by 2pm... neither was happening so there was no workout for me.
I had also intended to have a green tea when I met up with my friend.... but I had a large English Toffee with 1/4 coffee instead...sigh

Then I went to football where I met with Sam who was in a foul mood (again....still -- **cough** topomax) and was informed by him that he was NOT going to be involved with football next year if this is what it was going to be (here is the quality of life I was speaking about earlier)... basically him watching the team practice and then standing on the side lines during games -- but being sure to be included when the coaches and teacher were yelling at the boys.(I dont blame him) He is supposed to be earning a credit by helping with stats and doing what he is able to do to help with the team (throwing with quarterback, practicing snaps with centre, catching for kick off or kick returns, etc) but they coaches tend to miss this part of his marks...

I sure hope that things start to settle down for Sam and for us soon... I am tired and have a permanent headache and sore back/shoulders....

not again

2011-10-11T08:59:00.001-05:00

just got off the phone with our neuro (that we have had for all of 6weeks) and was informed that they are transferring us to the pediatric neuro clinic which when we were trying to get in to them didnt want us because they said they would be transitioning us when he was 16 (in December) anyway!
I dont even know what to think. I am so shocked at this all... I gave them the list of side effects and was also then told to take him to emergency for an evaluation for his mental health...
I have sat here and cried, talked with God, cried some more....
I know when Dennis is in and hears this new news he will not be impressed...
I dont even want to think what this will do to Sam to have to see another new doctor...
I dont know what I am thinking anymore about anything. Am I seeing things with Sam's health? Dennis sees them too so I cant be imagining it... or are we both?!?
I am doubting everything I do and say these days and now we are once again without a neurologist....

I am at a loss for words right now...

Thots and crap...

2011-10-11T08:05:00.000-05:00

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 ....

A run to remember

2011-10-10T06:41:00.001-05:00

... well the football boys and my boys will!

David as he first comes up to meet the team!

Davids view of the team as he gets close!

The boys cheering David on!

My "football" boys!

Starting their run!

These are some pictures that Dennis and Melissa (David's trip organizer) took of the boys from the Neepawa Tigers that came out to run with David McGuire for 'A run to remember' on Sept 27/11.

Running with David on the TransCanada

Isaac, Dennis, David and Josh.
(me sitting here teary eyed still over this pic!)

David is a brain injury survivor who is running across Canada to raise awareness for Brain Injury.
Sam and I were in Wpg at the EMU Clinic when the team and David ran down the TransCanada by Carberry -- so we missed it... sigh The team ran for 4km with David and they all tell me that they really enjoyed meeting him. I was so proud of not only my hubby, Josh and Isaac for running but also for our football team to run! There were 8 other guys that volunteered! What an awesome bunch!

David has an amazing story to tell so please visit his site or his FACEBOOK page and see if there is someway YOU can help with spreading awareness or make a donation. Also stop by his blog to read about his daily runs! (he runs about 40-45km a day!)

Here they all are after their run!
David gave them t-shirts that are A Run to Remember!

Thank you David so much for allowing our football team and family to run with you! You made such an impact on them! I only wish Sam and I could have been there to run too! You are doing such awesome work and we are all proud to have been able to be a part of what you are doing!

Dennis took along a bag of oak leaves for David too(he put one on his hat!), so something that our family in Manitoba has been doing is now reaching beyond our boarders!

coming clean

2011-10-08T08:45:00.000-05:00

I finally told my dad about Sam’s brain injury. I didnt go into details, just generalities and it felt so good to tell him. I told him that why we are not always able to be visiting him (appointments) but we want to be able to more. I told him about Sam and the epilepsy and I asked if he know what it meant for him to have seizures and he said ‘he shakes’...

It was such a relief for me to tell daddy about it. I would start to feel sick at even the thot of going to see him because the whole visit was pins and needles about what to talk about. I would start to tell him about my week (which usually entails doctor visits, trips to Wpg, etc) and then I would have to stop myself in mid sentence or thot. I was a wreck when it would come time to see him. I hated not being able to be honest about things, but I thot that it was for the best. I dont know how much of anything he understands and comprehends. I dont want him to be worrying about what is happening in our lives and with me. I dont want him stressing out that things are the way they are.

But last week as I sat with dad watching tv on our usual Thursday night dates. I looked over and just told him. I just gave him very brief story that Sam has a brain injury like him, but is doing great, except for the epilepsy, but even that is under control. I explained about appoints we go to and things we do, but I did not explain the extent of Sam’s injury or how it happened. I dont think he needs to know all of that!

After I explained things to him and made sure he understood I told him that it felt good for him to know and he looked at me and said “i love you”... for dad it is a typical response for a lot of things but this time I will pretend that he fully understood what I told him and he genuinely felt that was what he HAD to tell me then. I told him I loved him too and I missed our talks. He smiled and said “i love you”...

I dont know if it was the right thing to do... but I dont know if I know the right thing to do with a lot of things these days. All I am doing now is what I feel is right at that time.

And it felt right...

Grab some tissue first!!

2011-10-06T06:12:00.001-05:00

This was a post from a follow mom with a child with epilepsy and I wish I had had the warning of a tissue... sigh. I don't actually believe this is how God chooses who parents who, but after the day I had yesterday and the week before this it made me ... well first tears ran then the sobs came... so I will let you read it then I will ramble.

(don't forget to have the kleenex near by -- justin case it isnt just me!! Dont say I didnt warn you...)

Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs
His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare
and so necessary in a mother. You see, the child I'm going to give her has her own world.
She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that.
This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'".
She will never consider a "step" ordinary.
When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

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

I definitely see me in this story... I am limited on patiences these days and I am selfish. I wish this were all a bad dream that I would wake up from and Sam would not have a TBI, my dad were with me again and my life would not be so all encompassed in doctors appointments, hospital visits, worried mornings, new meds, new med schedules, stomach issues on my behalf...
But then I guess without all this going on I would not have to lean on God so much, I would not have met all the wonderful amazing people in our lives now and I would not have had the opportunity to spend the time with Sam that I have. sigh.... pass the kleenex again please...

Yesterday we were in Winnipeg for Sams Neuro-psych appointment. We were with the doctor and her resident for 2 hours! Yes TWO hours! We filled them in on everything from the past almost 3 years since we last seen the doctor and all that has and is going on. They have decided that they need to do some retesting with Sam for cognitive behaviours (which might help us with the school) and they want to help give Sam some daily tools to use which hopefully can help with stress, life,
anxiety, etc.

Sam and I will be in Winnipeg for a week when this happens but because he is on so many meds right now and they are changing on a weekly basis, the doctor wanted to talk to one of her colleagues about whether or not we should wait until things are settled down with that before we try anything else new. I understand that this could help Sam but if we have to wait it will most likely be in the New Year before we get back to it, then the school year is almost half over and the help we were looking for will be too long in coming ... again!

I want to say we are excited for this but in reality we dont get excited about much anymore in regards to the doctors. They tend to get our hopes up and then dash them. So it is day to day living again for us. Honestly I am tired of doctors telling us that we are right, that something needs to be done, then they leave us hanging for ages or what they 'do' for us is nothing newer than what we have been doing.
Dennis and I have found that the best strategies we have worked with are the ones WE have found on OUR OWN without the doctors help. And then when we tell them what we are doing they agree it is right and take all the credit for the work we have done when talking with others!

And as I say this about doctors we HAVE met with some amazing ones! Our new family doctor is Dr. N and he is FABULOUS!! We are off to see him today (yes another appointment for us) because of this new development with Sam ...

He is getting holes in his finger nails. I think it may have something to do with his meds as a side effect... maybe a vitamin deficiency, since one of the side effects of one of the meds is brittle bones (maybe why he fractured his ankle this fall) So we will see today. I have asked this question of other moms with kids that have epilepsy and they seemed to think the same thing.

I am so tired these days. Dennis and I have started taking B12 for energy, I am still going to curves (not making much movement in the weight loss area), I have been reading a bit more but I have not really picked up my camera at all. I miss it. I miss taking photos and playing with them. I think I might take our family pictures this weekend while there is still a bit of colour out there!

I will be posting soon too the pictures and a bit about David McGuire! Watch for it!

what the!?!

2011-09-27T16:28:00.000-05:00

I am sitting here in Winnipegs Ronald McDonald house watching Sam sleep. He did not get much of it last night. Or the night before or before that...

let me back up this train of rambling a bit....

ON Wednesday last week I called our Neurologist office to ask a few questions about the side effects of the meds that Sam was on and how they were ... ummmm.... a bit extreme. All we were wanting was an assurance that they were normal or maybe that there was a possiblity that it was also more absent seizure activity. What we got was a call about 45 minutes later from his nurse saying that he wanted us to get into the seizure clinic (EMU) the following week. This was followed by a phone call on late Friday afternoon to be in Winnipeg at the Health Science Centre MONDAY morning by noon. We would be staying for 5-7days of monitoring so be prepared...

We were a bit excited by this as we thot maybe it was more serious than we had thot. So Friday the call came (on our way to Josh and Ikes football game), Saturday AND Sunday brought butchering the cow, canning 57 qt and 30 pt of meat, bagging 100+lbs of burger, cutting a truck load of wood for cadets, cleaning the house, doing all ours and Sams laundry, baking buns, cookies, muffins, a square all for lunches this week, dinners and packing. Monday was a stop at the school to get work in order to stay caught up with this week and then the 3 hour drive to Wpg.

We arrived at the HSC by 11.50am, were admitted and taken to the EMUclinic, where we sat for 45 minutes, then proceeded to a room where Sam was ‘wired up’ with electrodes to hook into a machine to read his seizure activity. From there we were moved to the ward -- room GD-242 -- where he was settled in and FINALLY at 2.30 (after I asked about his meds) he was given his meds, THEN I went to the cafeteria to get him some food. We spoke with the neuro and what his plans were for Sam ove rthe next few days and all was good. His dinner was brought to him at 6ish, and at 8.30 it was time for me to leave and .... no meds... again I inquired if they didnt have them ready yet I would give him the ones from our ‘stash’... but I was told they WERE in but he would be given them at 10pm....

This morning I got to the hospital at 10.30 and he had eaten ‘some’ breakfast (not enough in his words) and had not had his val proic acid yet... (he usually takes them at 7am!!!!!) BUT he HAD had his keppra... the reasons behind this were because they wanted to do a blood level first --- ok .... but Sam said they did that at 6 am.... he got his val proic at 10.45.

By 11.30 Sam was starving so I went and got him a doughnut (a rare treat these days), a fruit cup and a small coffee. Thinking his lunch would be soon it would be a bit of nibbly to have for the day. Well lunch did not come until 1pm...

Sam was absolutely ravenous by then! And as he is finally eating his lunch in comes the neurologist to inform me that we have been “KICKED OUT” since Sam is only 15years old and NOT 18.... WHAT!?!?!?!

The doctor was very apologetic and blah blah blah... proceeds to tell me that there IS seizure activity going on and that makes alot of sense since there IS the bullet still there and blah blah blah.... then tells me that they DO have 24hours of monitoring to look at. And they are going to slowly ween him off of the keppra and onto Topamax.... more blah blah blah and more blah blah blah.... Sam then asks if he can play football and is told basically “no and probably never will because of the epilepsy”.... bit more of blah blah blah and ...

Then he leaves... I sat there dumbfounded and Sam close to tears of the new news on football. I left to call dennis... then I got my mad on and went to the nurses station where I continued to hear from 2-3 nurses FROM THE EMU CLINIC that this is all the neurologists fault and he should have known better and blah blah blah... I asked if no had read his chart first and saw his birthdate and did the math!? No because it is up to the doctor.... OMG! Seriously!?! Pass the buck just a bit more now ladies! Even when I tried to explain that it was NOT ONLY the doctors fault that SOMEONE at SOMETIME should have done the math to realize that this kid is NOT 18 and said SOMETHING to SOMEONE before we travelled 3 hours to get here! But nope all they kept saying was it was ALL the doctors fault.... sigh

I packed up all of Sams things and waited for them to get all the stuff off of him. I also (not in the nicest way either) pointed out that now he has had 2 days with little sleep (one night of worrying about going there and one while in the hospital), all his eating is off, his meds have been messed with AND a new med introduced...and I am expected to take him home...

3 hours travelling...

EXPECT SEIZURES now people! ANd because we are at a point with his seizures that he does not go to the hospital the seizure stress is all on Sam and me. He will seize and I will watch and deal with it and he will deal with the after effects of it AND his newly formed record of 4 weeks seizure free will be gone and we are back to square one -- waiting .... nice... thanks a lot!

We came back here to the Ronald McDonald house to pack up and calm down and while I was talking to our Epilepsy advocate Sam fell asleep on the bed. Thankfully we were prepared to stay here in WPg for 5-7days, so we have the room. But we will stay tonight and start for home fresh in the morning. And if he seizes... maybe I will take him to the hospital and sit and wait for someone to do something....

When I get home I will be on the phone to our MLA and MP and next week after the elections I will be on the phone to the Minister of Health to explain this story to them too. I will be making sure that this doesnt happen again to US or ANYONE else!

Right now tho I will sit, have my coffee in my room (not usually allowed in the House but they are letting me stay with Sam incase he seizes) and I will try to relax and read my book.... or maybe I will start some phoning...

Upcoming week ....

2011-09-25T18:30:00.000-05:00

Tomorrow Sam and I are heading into Winnipeg for a 5-7 day stay at the Health Science Centre ... or well Sam is staying there and I will be at the Ronald McDonald house down the street.

He is being admitted to the EEG Clinic for a 24hr surveillance of seizure activity. Since Sam has been on the Keppra (and the val proic acid too) he has been experiencing major mood swings, extreme fatigue, lack of appetite, temors and memory loss issues. These are all side effects of his meds but they could also be due to absent seizures.

Sam has been very hard to live with... his mood swings have been so severe that they are scary. He has had issues with his memory -- he will talk to someone in the morning and by the evening he will remember talking to the person but not the conversation. He is not eating much, if at all (I was told by a friend that Sam's friends will get after him at school that he has to eat). He is tiring more and more easily everyday. When he eats, writes or does anything his hands shake so badly that he can hardly do whatever task is at hand.

We aren't sure what to hope for an outcome... absent seizure activity or change in meds ... either are not exactly the most favoured results.

Something on a more positive note with Sam, he started back to school last Wednesday. He is still working with an IEP (taking Math and English) but he is also doing 2 hands on classes (Foods and Nutrition and Chorale). He is taking these 2 courses more for social time with friends and easier credits for him to attain. If things change with his health it is not a big deal if he is missing the classes. We were all happy for him to go bak to school but we did have some brain issues to deal with too.

Since his memory is not too great it was going to be hard for him to stay focused and on top of his work. Also, until last week Sam was not admitting that he has a brain injury. So his brain kept telling him he was 'fine' and he was more than ready to go to school. HIs brain was telling him that his injury was all in our heads... It wasnt until he started working on his self therapy book and he had a major melt down with Dennis, that he was able to start seeing that he has an injury and he needs to start working on getting it to heal. We have seen some great changes in Sam in just the first few chapters that he has worked on. So part of the reason I am going to WPg with him is to help him stay on track with his self therapy and school work.... the other reason is I am his mom and I know I would be of no use to anyone here at home when he is 3 hours away with no family or visitors -- I know, I know... I am the big baby here...

I will try to keep the blog updated on our stay while we are in...

Changing all the time...

2011-09-13T08:48:00.000-05:00

I thot maybe it was time to talk about our new routine here... our new a the moment routine I guess you could call it -- since it could change again next week! And I am not kidding...

Sam is now on a new med regime:
7am ~ 250mg Valproic acid and 250mg Co-Levetiracetam (Keppra)
2pm ~250mg Valproic Acid
9pm ~ 750mg Valproic Acid and 250mg Keppra

With his meds this high it is really setting Sam on his ass. He is so tired that he now sleeps til 9am (or later if needed) and goes to school for 12.30 where he is in a class where he works on Math and English until 3.30 when school is out. He has football practice on Tues and Wed, games on Fridays -- he is assisting the coaches where he can and on Thursdays he has cadets. If Sam has any troubles with sleep (or lack of it) he is to stay at home and rest. We are trying to make his school stuff as normal as possible but with his high meds, short term memory losses and TBI issues we are concentrating on 2 courses right now -- with the option to add more as he feels he can handle without adding stress into the equation.

On this coming Friday we are off to Wpg for the ESAM annual general meeting AND his keppra doses get doubled to 500mg twice a day then too, so we may have a new routine to follow after that. School schedule may change also... so we will see.

Sam was none to receptive to this new school schedule at first until we wrote out 3 scenarios for him to choose from. He then realized what we were trying to explain to him. Mostly that this is temporary(hopefully only until January) and for his best interest and health. He is still pretty unhappy about it most days but he realizes (I hope) that there really is no other option. We choose this routine because it enables him to still spend lunch and breaks with friends at school, participate with his football team and cadets AND (mostly) reduces the stress that he feels with school -- that cause the seizures.

Now also add to that he has a full fiberglass cast on his foot -- the doctor thinks he may have fractured his ankle and hopes that this will help it to heal better or at the very least help the swelling to go down so they can get a better read on the xray...

This new routine also means more running to town for Dennis and I. Depending on our day and our schedules, one of us drives Sam the 30miles to school and then comes home. I also am running into town for football once a week, cadets (I use this time to visit with Daddy!), and Friday football games. Hannah has joined gymnastics this year and since she has never asked to join anything really we felt it was not fair to say no to her.... so we are in town 2times every day ... 30 miles one way...

Some days I have done meals, laundry, housework, phone calls, writing, football stuff AND drove 120miles... whew... no wonder I am beat! I know this is just a season and it will all be over with before I know it. I am trying to see the best in each day -- such as Sam is now almost a month seizure free!!!!, Josh is starting to talk with us, Isaac will be 14 on Wed, Hannah is growing into a beautiful young lady....

sigh....

All because routines change...

More than one injured party

2011-09-12T09:52:00.000-05:00

3 years ago, as most of you know, our second born son Sam was injured in a freak gun accident. He was at his grandparents farm with his older brother, Josh, target shooting and Sam brought his gun up too fast and his himself in the head with the scope. This caused him to become dazed and drop his gun which discharged and shot him in the head. That was our first injured...

Our family has always thot to be the 'second' injured party until last might...

Over the last 3 years and mostly the last year our family has under gone some major changes, and I do not mean of a medical kind (altho' there was lots of those kinds too). The changes I am talking about are us as a family growing apart. Feeling like we are just a bunch of people that live in a house and tolerate each other. We have talked with our kids and tried to find out what the problem is. Others have suggested that we are under going what most families do as your kids enter their 'teen years'.
It had finally all come to a boiled point this weekend and Dennis and I stayed on top of the kids until we got some results... and some talking out of our 'strong silent' boys.

I am going to go back a bit here and state that I have always wanted us to go to counselling but due to lack of support from the rest of the house and then there is that pesky issue of money to pay for it, we never have gone. This weekend finally brought to light that we either: A) go to counselling, B) start talking about how we are ACTUALLY doing or C) continue on the path we are on and not have a family life -- continue living in the hell we have been.

When we brought this news to the kids and shared with them things that have bothered us, things that irritate us, our 'happy thots'... just life and how we feel we are doing they started talking too ... a bit ... they all basically agreed they wanted to deal with our family issues as a family first and if we felt we needed it later we would go for more professional help.

So they started talking and brain storming. There was a lot of things said that made sense, some things we (Dennis or I )had not heard out loud but had assumed was being thot by the kids. (they can be very sensitive and thotful when they want to be!)

But the oldest never said anything. Josh was basically silent the entire talk. Last night I had a good talk with him and I dont know what made me think it let alone say it, but I did and it opened a whole flood of emotions in my Josh. I said "where you the one who said to go target shooting?" and that made him break down... he crumbled in front of my eyes and I felt a huge weight hit me. Josh has held it all in and has blamed himself for all of this. He blames himself for not only the accident but for all the things that have followed because of it. I cried right along with him, assuring him that it was most definitely NOT his fault and that we do not blame him for anything. We cried and hugged and cried more. Then we talked more and he admitted that this is the reasoning behind his not wanting to take the other kids anywhere with him or do anything with them because he is scared that someone will get hurt again and he will be responsible. It is because of this too that he FEELS so responsible and stressed out about Sam. We talked for a while and then we decided to take a break and we will resume talking tonight... with everyone.... as a family.

I pray that this will be the new beginning we have all be desperately needing and wanting for a while.

You're not going to believe this...

2011-09-03T07:20:00.000-05:00

Yes that is Samuel...

yes he is in a hospital... again

Yes it is an xray machine

No he is not there due to a seizure.

Well it is a funny story....

no not funny HaHa...

Funny as in OMGosh seriously!?

So here is the story:

Tuesday night we were at football practice (yes Sam is still participating with the team-- he is helping with training and where ever else he can) He was playing catch with the quarterback -- who broke his arm this summer in 2 places). Sam jumped up to catch a pass and he came down on a 1X1square inch pipe that is on the inside of the school track and he rolled on his ankle. Immediately Sam ankle swelled and it looked like a golf ball was under the skin of his ankle. Another mom and I walked with Sam over to the hospital (ironically another player on the team was at the practice who had some crutches that Sam used). By the time we were done with xrays and were seeing our doctor (we were lucky he was on call) the golf ball had grown to a tennis ball...

The doctor looked at the xrays and put Sams leg in a 1/2 cast. Sam had to use the crutches for a day and then use them only to help him put weight on the foot. If he was not able to put his full weight on it by Friday (which was yesterday) then we needed to go back to the doctor because it might be fractured. If he was able to put weight on it I was remove the 1/2 cast and rewrap the ankle with a tensor bandage. These are all the lovely colours of his ankle once we removed the cast....

It was not fractured!! YAY!

Triggers...

2011-08-30T06:25:00.000-05:00

Trying to figure out these seizures are going to be the end of me! Learning (or figuring out rather) what Sam's triggers are .... sigh ... lets just say that just when we think we are getting a grip on the and possibly seeing some order...
we don't.

Yesterday Sam was tired-- so tired that he was 'napping' at 9.15am. He slept for a about an hour then went out to help Dennis with some field work at 10-ish til about 2, then came in and was very quiet and withdrawn, watched a movie in our room, ate a bit of dinner and came down before bed t inform me that his back and shoulder on the right was jumping like crazy.
His quietness and subdued manner is different from when his anxiety kicks in (obviously) and with the nerves jumping and his tiredness -- well we thot there might be a seizure this morning. Not that I want him to have one, I just wish we could learn the triggers and possible pre-cursors to them. These surpirse sneak attacks that they do are too much!
This week I am trying to get some snacks and lunch things ready for school next week, lunch stuff ready for our 2 road trips on Thursday (to Wpg) and Friday to Regina, school supplies organized, canning done, laundry, housework and football -- throw into this mix the new puppy had fleas and gave them to my dixi, so that meant 2 doses of 'flea bgone' and one bath AND an appointment at the dog groomers so that they can stay at my mom's this weekend while we are at the wedding...
I am also trying to not make the house stressful (as that could be one of his triggers). I am beat! I am supposed to work on the attic room for my space this week but I don't see it happening.

I spoke with the resource teacher at Sam's school yesterday too and we are trying to make some plans for his school year but until we see the neurologist we can't do a whole lot -- which will mean a rush on it all next week. I am ok with not pushing it but Sam is determined to get back to normal. I hope we can make it back to there too.
I miss our 'old normal' ...
the one we were at 6months ago...
Never thot I would hear myself say that...

Defying Gravity...

2011-08-27T19:54:00.000-05:00

Last night Dennis and I took some time out of life to go and see the Broadway play WICKED. It was amazing! I loved it - Dennis enjoyed but I think LOVED might be too strong of wording for him.

I loved the words to the song Defying Gravity :

Something has changed within me

Something is not the same

I'm through with playing by the rules

Of someone else's game

Too late for second-guessing

Too late to go back to sleep

It's time to trust my instincts

Close my eyes: and leap!

It's time to try

Defying gravity

I think I'll try

Defying gravity

And you can't pull me down!

http://www.lyricsmode.com/lyrics/w/wicked/#share

I know these lyrics are about love but they spoke to me last night about all the changes that we as a family have been going thru the last few years and especially these last few months.
I am tired of playing games with rules that seem to be more from EVERYONE but THE ONE who matters.
I am tired of people who have no idea of what our house is going thru telling us what we should be doing...
so....

I am taking my faith in God (trusting my instincts)

Closing my eyes and leaping -- straight into my Fathers arms.

I am going to work at handing it all to Him.

I am not going to worry about what is next or things I can not change. I need to start focusing on not just Sam's health but my own also.

I saw the counselor yesterday and I am going to work on getting the attic area back to a place for me to be to just be ... well ... me. Somewhere for me to be where I DO NOT worry about Sam, Dennis, Josh, Ike or Hannah. Somewhere that I can read, work on photography or just do nothing for a few minutes a day. The kids will be that if I am up there they are not to bother me. I will give them a time of how long I will be up there for and when I come down (and only then) can they show, talk or whatever they needed to me. They also need to learn to go to Dennis for things too. They need to learn that while I may be mom that he is dad... we are one in the same for a lot of things.

I am talking with God too about whether I am to be going back to work -- I am handing it to Him.
I am praying about Sam's doctor appointments -- and any issues that arise ... I am handing it to Him.
I am looking into maybe taking a photography course for a few months this winter -- again I am praying about it and handing it to Him.
If Sam is to be home 1/2 days for a while, we are wondering how we are going to afford to not only drive to town everyday, still be involved with football and the other things that the kids are involved in-- I am handing it to Him.

Everyday I am going to spend time each morning with Him, and work my days so that I can spend some time each day doing something for me (and NOT just Curves or walking-- as that is for my physical health)
I knowI have said before that I should be doing all of this but now I am at the point where I HAVE to do this. I am losing ME in this process of doctors, appointments and life.

So this is me... Defying Gravity...

1122 days...

2011-08-25T11:27:00.000-05:00

That is the number of days we have been waiting for a neurologist... (if you have read this blog you will know we have not had one and have just recently wondered why not...)

BUT!!!!!(wow that is a big but! lol)

Next week at this time we will be in Winnipeg at the epilitologist in Winnipeg! They just called today to push forward our appointment which was for Nov 30 to Sept 1!!! We are all very happy and extremely excited for this!
Sam is hoping that he will allow him to go to school regularly (me too) and I think he was secretly hoping for an all clear for football (which I would LOVE too) but I think that one is a stretch.
Next week... wow!! I am just....

WOW!

God is good!

Times they is a changin' ...

2011-08-25T07:19:00.001-05:00

After our week of changing of meds, strep throat, holidays ending with the seizure was followed up with a first thing Monday morning doctor appointment with our family doc. Dr. N. Both Sam and I had appointments and both had a bit of alarming news.

First of all, after talking with the doc about Sam’s med levels we were told that with the fragments sitting in the 3 different lobes that he is most likely having 3 different kinds of seizures..... so one type of medicine is not necessarily going to work. He may need to go on a second med to help with the seizures. The doctor also suggested that since Sam is sundowning by 2-3pm (this is what valproic acid does to people) that he only takes a 1/2 day school day...

Sam was NOT impressed with this news. He is just a ‘wee bit’ upset... to put it mildly. He told Dennis that he didnt want to do a 1/2 day and who can blame him. He is going into grade 11, he will be 16 soon and wants to be with his friends not stuck at home with his mom. We are still working on what we are going to be doing when school starts (In 2 weeks)

We are hoping for the neurologist appointment to be moved up too now -- our family doc is going t aim for in the next week or two or at the latest in the month (I think he meant Sept.. but we will see)

I spoke with the school student co-ordinator yesterday and she is going to work on getting a tutor for Sam if needed. SHe also said the school will work with us for whatever we need. It is great to hear but in the last 3 years it all seems to come down to the teachers and if they don’t ‘see anything wrong’ with Sam so they don’t help with what is needed for him: reminders to take breaks, reminders to write down assignments, checking in with him throughout the class time on how he is doing, etc. They left him to his own design these last few years and he faked his way thru it fabulously! (give the boy an Oscar...) SO maybe this year with the URIS nurse giving a talk about epilepsy at the first Professional Development Day and what to watch for and do they will help us more.

At our appt with the doc. we also learned that I have high cholesterol ... the not so good one. It is high enough to be concerned and in 3 months we will test again and see what it is. I AM exercising and watching my diet-- doc said this one is mostly genetics so not a WHOLE lot I can do... sigh BUT!!!! All the tests and work ups he did a few weeks ago show my physical was good -- YAY!

The next few weeks are going to be interesting and hopefully a continued move in the direction we need it to be to get Sam the kind of help from the school that he needs that will work with not only his epilepsy but his TBI too. I pray it will not be stressful for him (seizure trigger!!!!) and it will be a workable arrangement for our whole family -- because since Sam’s accident in 2008 this has been a whole family lifestyle change and life change. It needs to work for our house and our family not just Sam... and I think a lot of people forget about that part of our journey ... Dennis and I still have 3 other wonderful children to raise and spend time (not to mention money) with and then there IS that pesky thing of keeping a marriage alive and running.... sigh

Keep calm and Carry on... ummm ok?!

2011-08-22T15:43:00.001-05:00

Lord, help me to remember that today there is nothing that You and I together cannot handle. Psalm 68:19 The Message

This has been a passage that has gone thru my head a lot lately. The last few years actually.

Everyday is a new challenge for not only Sam but for all of us as a family. We learn of new developments...

and then we learn how to deal with them...

I have lots of people who ask how I do it?

How do I get thru everything that has been thrown at us?

Somedays it feels like my answer is “I am not sure if I do ‘get thru it’” other days my answer is “I just do ... with a lot of prayer”

This last week is a good example of ‘I just do’. We went on our second ever family vacation. Most people go or plan for a relaxing holiday -- and we are like everyone else. We HAD planned for R&R ... and that was as far as it got... we planned.

The week before I was so busy running around with doctor appt’s, orthodontist appt’s, getting the oil changed in the van, packing when I could, 2 very sick kids (Hannah with tonsillitis and Sam with strep throat), helping hubby when I could and just regular everyday things: laundry, meals, etc. that I was going to need a week to rest so I could GO on holidays with everyone!

We discovered on the day we were leaving for camping that Sam (who was still running fevers and a VERY sore throat) was given the wrong amount of medication... he was given a pediatric amount... Sam is 6’1/2” , so his meds were increased to a proper amount. The doctor also informed us that his seizure med levels were VERY high (should b 50-100 and his were 130) This meant for us as the family that Sam was tired and still very cranky but doctor told us to go and get some rest and enjoy our time away “Sam will be better by morning” .... so we went.

At about 7pm we reached our camp ground and left the van to check in... mistake #1.

Theer was an altercation between Ike and Sam -- which ended in Ike getting a few knocks from Sam and Sam getting spit on.... sigh... seriously not impressed at this.

Mistake #1 then lead into altercations #2-4 with Sam and Ike as they were attempting to set up their sleeping quarters for the next 5 days (the tent). This lead Dad to have to get involved and then everyone was cranky! Which lead to us praying before anymore injuries incurred or anyone hurt feelings...

The next 5 mornings were started with my phone going off at 7am (but actually being up st 5am to listen for any seizure activity from the tent...) and giving Sam his meds, trying to make coffee quietly and not wake anyone (so that mama was happy and had a quiet start to her day!). Hannah and Ike were on ‘seizure alert’ before this time and after ... Sam was not impressed by his new ‘watchers’.... again .. sigh

The days were filled with Sam doing his best to not be with us (typical teen behaviour) and not wanting to keep us informed as to his where abouts (which we asked to be told if he was going to beach (not to swim without someone) and if he was taking off for a long period of time ‘please take your cell phone’)

It was a stressful week and we were all glad to make it home without any seizure activity!

We got home Thursday night and had plans for going to a free concert at Clear Lake on Saturday...

... Friday we went to my mom’s house for dinner and Sam stayed over night at my mom’s and Saturday morning I received a call from mom that SAm was not feeling well. After a bit more information we discovered he had had a seizure.... so off to the hospital we went.

Thankfully we were only there for the day this time, but it was a loooooooong day.

All thru this past week I have prayed and thot and prayed and thot.... and prayed some more. I have had to keep telling myself that God is with us as we go thru this and sometimes we have to just “let go and let God”. As I sat in the hospital again this weekend I thot of this and prayed...

This is how I get thru everything. I do have mini meltdowns (as I like to call them) which usually happen in the car alone or the odd time while shopping...sigh.... but I pray my way thru them and carry on (kind of like the Queen’s tag line”Keep calm and carry on”)

But I have also been known to say to people who ask ‘how do you do it” my reply is “what else am I going to do!?” (such profound words from such a small town girl!)

I will admit that this week I will be starting back with some counseling but more because I need to learn to let go of stress more (silly stomach issues) ... I am a hoarder sometimes -- of stress ....

sigh

i have more news to share but I will do that tomorrow...(see I am teachable on stress levels...just a bit of a slow learner! ☺)

The one...

2011-08-09T06:18:00.001-05:00

The following post was in my inbox this morning, it is from Proverbs 31 Ministries (I get their daily devo every weekeday -- if you want to receive them to just click on the link and sign up for them!) and it really made me stop and think... the one...
I believe that the one that the One sent to us this week is our new doctor -- Dr. Nasralla -- when Sam and I saw him last week he told me how he was working to get Sam into a neurologist and he had been phoning and talking to doctors and that by the end of this week he was going to have answers for us. I believe that God put him in our lives for this reason. He is going to be the doctor that will fight for us and with us for Sam's care! So I will continue to pray for Dr. N and Sam ... and all the other doctors that are and will be involved with us (they will need it once they meet us! lol)
Yesterday I had to take Hannah gurl into the hospital because she had bleeding tonsils and an ear infection -- Hannah rarely gets sick... and we were told that Dr. N was in Wpg -- so I joked with both Hannah and Sam (he was in for blood work) that maybe Dr. N was in Wpg fighting to get Sam into a neurologist... maybe...
The trip to the hospital ended with the doctor on call not looking at anymore out patients as he was late for his clinic and God making sure there was an ENT at the hospital (we are a SMALL rural town with no 'speciality' doctors regularly) who looked at her -- with a prescription in hand we headed to the drug store then the grocery store for some yogurt, pudding and apple sauce then home to bed for my lil' girl. She is (or rather was last night) feeling better now that she was able to sleep the day away yesterday and eat some food too! Again, God put the one doctor that we needed in place before we knew we were going to need him! What an amazing God!

August 9, 2011

It Just Takes One
Marybeth Whalen

“But the gift is not like the trespass. For if the many died by the trespass of the one man, how much more did God’s grace and the gift that came by the grace of the one man, Jesus Christ, overflow to the many!” Romans 5:15 (NIV)

“I just wanted to tell you,” she said. “It just takes one.” She knew we had our house up for sale and wanted to offer me a word of encouragement. She had also recently been through having her house on the market and knew what I was facing.

As she grabbed my hands in her own, she looked at me earnestly and said. “It just takes one person to come along and love your house and want to buy it. Hang onto that when you get overwhelmed. God will send that one.”

I have thought about what she said to me, and how this Truth applies in many aspects of my life. God will send that one. The one person who can best encourage me. The one person who will provide the answers I am seeking. The one nugget of Truth my soul is craving. The one bit of hope when everything seems desperate around me.

What is that “one” thing you are waiting for God to send you right now? Maybe it is that one test result you are waiting for. Maybe it is that one check you need desperately to show up in the mail so you can make it to payday. Maybe it is that one affirmation you need to hear, but rarely do.

Do you believe that God will send that one? Do you walk in that belief, even when circumstances around you say otherwise? Do you focus on what is happening, or God’s promises?

God’s most wonderful promise came through the One who could be tempted yet sinless, Lion yet lamb, human yet God. God’s plan for redemption came through His one and only Son.

It just took one—one sacrifice, one resurrection, one hope for eternity. Humanity cried out for restoration and God responded by sending that One.

“It just takes one,” the woman told me. And that is true, even in this broken, fallen world. So many times that “one” seems far away, so insurmountable, that we despair of ever seeing it come to pass.

Make today the day that you live believing in that one thing happening—whether it is a sold sign in your yard or healing in a relationship; turn to the Creator of all things with whatever is on your heart. Spend today reflecting on that one sacrifice He made on your behalf, because of His unfailing love for you. Trust Him to do what is best for you—whatever His answer may be—and live in expectation of the abundant life He has promised.

Dear Lord, help me to trust in You to send the answers I need. Help me to take my eyes off my circumstances and focus solely on You. Thank You for the sacrifice of Your precious Son so that I could have salvation. In Jesus’ Name, Amen.

Life ain't always fair... sometimes it really SUCKS!

2011-08-05T16:08:00.000-05:00

in my head I have wrote this post a dozen times today... and now I am struggling to find the words that I wanted to say...

I have cried today
I have prayed
I have ranted and raved
I have posted frustrated statuses on facebook
I have made phone calls
I have stumbled over my words
I have broke down in my car while driving
I have cried at the drug store (and probably freaked out our wonderful pharmacist)

Yesterday on the way to Brandon for a day trip of shopping and getting out of the house I got a phone call from the URIS nurse from school. It has been recommended from ESAM (Epilepsy and Seizure Assoc. Manitoba) that Sam not play football -- until he is seen by a neurologist. The real kick in the teeth was to be told "it is for his best interest" " YOU wouldnt want him to get more seriously injured or have other issues physically".... GGGGGGGGGRRRRRRRRRRRRRRRRRRRRR

"Nooooo, really!?! His best interest!?" I wanted to yell at them WTF do you think I have been doing the last 3 years since the accident and the last 15years of his life!?! Do they seriously NOT think I know all this!?! DO they think I am not aware that he needs to be looked after physically!?!

I think that these people seriously do believe this... but I also believe that THEY have forgotten that there is another side to Sam. There is his emotional and mental side. Survivors of brain injuries and people who live with epilepsy all have to deal with issues of depression... This summer since Samuels seizures have started he has lost his cadet summer camp (which was ALSO a paid job for 3 weeks), he is unable to go for his drivers license, he now has a LOOOOOONG list of restrictions on him at his regular cadet year -- where he has been a cadet for going on 5 years. (one of the restrictions is no marching for him-- meanwhile he runs 3-4 miles a day ALONE...)

I totally understand that there has to be precautions and some restrictions... but how about going on an individual basis and not a "broad-general-all-or-nothing" kind of schedule. if they were to step back and see some of these issues that they are restricting him from are not only ridiculous but they are detrimental to his health... his mental health! He is so upset by this new development ... he was really hanging on to football now with the cadets and license thing... Even tho it is just til we can have a neurologist OK it... that could be .... FOREVER...

Sam and I were at the doctor's again for a check up. Dr. N told us that he was on the phone with the HSC this week -- with BOTH pediatric neurology and the adult neurology -- apparently even tho we have been 3 years without a neurologist and Sam will soon (in less than 6 months) be 16 years old and be able to go to the adult neurology -- they dont want him. But it is almost the same amount of time to wait for a ped appt.... so by the time he actually GETS to the neurologist he could be viable for the adult neuro anyway!

A re-cap of our day is once again our life and Sam's is on hold as we wait for yet another doctor to 'let us' move on to the next stage ...

Today...

2011-07-29T09:19:00.000-05:00

is one of the hardest days I have in the 364 other days in the year.
3 years ago today I got the call to pick Sam up from the hospital...

and 3 years ago today our whole world was turned on its side.

In the last 3 years we have had too many to count doctor appointments, trips to Winnipeg, to Brandon, days at home resting, trips to the school, to the hospitals...

New developments of fatiguing, anxiety, seizures...

I am going to pick up a cake today for him -- it is a good day!

I ❤ my son
I ❤ my family
I ❤ friends
I ❤ the help from the medical staff we have had
I ❤ my new found friends who really get what we are going thru and offer support and

Land of Confusion...

2011-06-30T08:06:00.000-05:00

After yesterdays trip into the city, I can say I am now totally confused about ....

well...

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything... and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said "YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!" (side note -- if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog -- **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started. They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read ... we left for our doctor appt. with the ped....

That where things went a bit ... out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist -- these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see -- names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam's partial seizures or helping us to get things set on a more seizure free path-- other than taking his meds. (which are now up'd) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands...but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated... but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can't say anything about it as I am not sure what it will all do or not do for us...

Coffee Chat Interview in 4 parts

2011-06-27T14:36:00.001-05:00

Here is the promised video of the coffee chat I did in June with NACtv Coffee Chat with Jim Cockburn. It is in 4 parts via You Tube -- please take some time and watch!

The Banner -- Brain Injury Article

2011-06-26T19:08:00.002-05:00

June is Traumatic Brain Injury Awareness Month

By Rita Friesen

It is a natural progression from ally to advocate. For Jodi Ginter there have been a series of events in her life that have caused her to become involved with survivors of traumatic brain injuries. On a daily basis Jodi faces three very different types of brain injuries. Her son, her husband and her father all come under that broad category. What most of us don’t understand is that brain injuries can be caused by accidents, sports injuries, strokes and whenever the brain is without oxygen for a period of time.

The effects of a brain injury are as varied as the individuals that suffer with them. For some the taste and texture of food changes, dramatically. Old favourite foods now taste repulsive. Smell present differently. And often words become elusive. For some the nouns are like drops of mercury, skittering away when needed. For others it can be verbs, or simply longer words. Most of us also don’t understand the torments of the personal journey of the survivors. It requires an incredible amount of courage and stamina to walk through the routine of a regular day. Going to school, going shopping or even hanging out with friends saps their inner strength and resources. The ultimate goal is to look normal, to fit in. To be accepted. When such huge deposits of coping skills are withdrawn for a public appearance, too often the reserve is empty by the time our loved ones are safely back home. Home is where the negative energy can be dispelled, and is.

Studying the effects of brain injury is enlightening. I had several aha! moments. The effects are often invisible, as are the symptoms of mental health diseases. The public fears the unknown and the unseen. People with brain injuries, and mental health issues, only go outside the home on their good days. So they look normal, but they pay a high emotional price for that. Individuals from both groups have been heard to say that they wish they suffered from cancer, because people understand that.

Jodi’s initial aim was to educate her immediate family about brain injury and the effects. She wanted people to know that when a survivor is out in public they are trying desperately to cope with a barrage of outside senses. They are processing sights and smells and their brain is literally making new maps and tracing new images of ordinary events. That’s hard work. Jodi spent a great deal of time with her son as he recovered from his injury. Knowing him well, she was able to decipher his wants and his dislikes. Unlike the doctors who have the book learning, or nurses that spend short periods with a patient, as a mother Jodi listened and learned from her son. The natural progression from ally to advocate occurred rapidly. With an excellent command of the English language and a commanding mother presence, Jodi got the attention of the professional staff. She was not ‘just a mom’. She was a primary caregiver. Her son lost twenty-five pounds in his initial hospital stay. When food aversions due to a perceived change in taste, texture and smell, caused a loss of appetite, Jodi and the listening staff worked to find food that could be enjoyed.

The roll as advocate has broadened to educator. Jodi was asked to present her journey and it’s lessons to a class of nursing students at ACC. She and her family work with the MBIA, Manitoba Brain Injury Association. The group has chosen an oak leaf as their symbol, the oak tree being recognised for its strength. These oak leaves appear in different colours representing the uniqueness of the survivors. The organization provides a support group, a safe place where people speak the same language.

When asked what one thing She would like people to understand, Jodi replied,’ Please do not assume that everything is fine just because they look fine. There is a hidden picture.’ Survivors constantly fight the image of people with brain injuries being dumb. They fight feeling dumb.

Jodi Holmes Ginter is a remarkable individual. Despite the dramatic twists and turns that life has tossed her way, her faith remains strong. She appreciates deeply the miracles their family has witnessed. Jodi can even appreciate God’s sense of humour. How did he ever figure her to be strong enough to deal with so many things- wife, farming partner, mother of four, daughter and friend – and advocate for three loved ones with brain injuries!

This month is Brain Injury Awareness Month. To gain a better understanding of the issue follow Jodi’s blog. http://visibleangels.blogspot.com

Now MY brain hurts!

2011-06-23T14:08:00.000-05:00

I have been so busy this week learning about seizures. I have been searching the net and talking to people who have epilepsy AND to people at Epilepsy and and Seizure Association of Manitoba. We will be going to Winnipeg next week on Wednesday to see Dr. Goldberg and we are going early enough to stop and talk with Phyllis at ESAM. She gave me a TON of info to start with Sam in regards to diet and a few lifestyle changes, until we get to Wpg. She also gave me 2 epileptologists (neurologist with lots of extra and special epilepsy education) to ask Dr. G for referral to.(pray that he will send us to the first one that was recommended). Phyllis also told me that Sam will now be diagnosed with epilepsy because he has had 4 seizures. (I know we will wait and see what the doctors say...)
My brain and my heart are competing on equal levels of pain these days... I thot we were going in a new 'slower' direction...

guess I was wrong

seizures are not fun

2011-06-21T05:19:00.001-05:00

5:56 am

9:52 am

4.40 pm

1 minute to 1.45+ minutes

These were the times Samuel had seizures yesterday and for how long.

They started early in the morning at home and continued the rest of the day.

They were full clonic tonic seizures just like before.

The change this time was there were 3 in less than 12 hours, he took longer to regain consciousness and he was throwing up the first 2.

Our family doctor got thru to our Winnipeg doctors and it was decided that Sam’s med’s would be increased (thankfully we had room to move there) and that only if he seizures again after this will we go to Winnipeg.

I think it started because of our Thursday trip to Brandon. We left before 7am - which is Sam’s morning time for med’s and I didn’t have any in my purse (not sure where the bottle went that was in there) so we had to wait til we got home to take them -- and he did at 7. It was a quiet evening all round and everyone went to bed fine. But that missed med at 7am could have been the culprit.

Then when the seizures started before 6 am and he started throwing up, there was no chance to get another dosage in to him. The nursing staff gave him some gravol to try to settle his stomach so we could get his meds and something for the massive headache he had -- but the seizures continued. Even after he got his dose.

Just before 10 am he was sleeping in ICU and another one started. More vomiting, and longer to recover. So the doctor called to Wpg and got some advice. Next time he is to go to Health Sciences.

Fast forward to 4.40 pm and I am on the phone with Isaac -- who is at home. I thot I would get him to pack some things into a bag for me incase we had to head to Wpg and as I am talking a nurse came to get me and tell me Sam was seizuring again. This time no vomiting (thankfully!) and a bit quicker recovery time. Then Winnipeg decides to have Neepawa work with his med levels first (increase them) and if that doesn’t work then he will go to Winnipeg.

I am not too sure how I feel at this point about this all. I understand that Winnipeg doctors will be doing the same thing there as they are here. My concern is if he continues on this seizure path how much more damage is happening to his brain? Each seizure is a bit more damage done to it. Our doctor says that the ‘only damage being done to the brain during the seizure is lack of oxygen’.... only.... not a real instiller of confidence at t his point for me...

So Dennis and I stay the night at the hospital in Neepawa and try to sleep. Both on edge and not really sleeping -- but ready, in case we are awoken by Sam’s alarms going off that he is having another seizure.

It is now 6am Saturday morning, trying to record it al for the blog...
... and my sanity...
I have been awake since before 5.

I am tired.

I feel grubby.

I need a coffee and my book.

I feel like I have been run over by a truck....

but Sam didn’t have any seizures so our night was good

I can see the sun making all the flowers and grass glisten in the garden behind the hospital... and I will take it and work to make it a wonderfully beautiful day.

Oak Leaves

2011-06-14T10:52:00.002-05:00

Yesterday 10 local businesses accepted the Oak Leaves for Brain Injury Awareness! There are now over 300 TBI Awareness leaves waiting to find a shirt or jacket to be pinned too! I am going to take a minute to thank my Amazing Friend Jenn for not only taking this pic and emailing it to me (cuz I forgot to take some) BUT for also being a business that is a Brain Injury Awareness Supporter! She posted a pic of herself on FB wearing her leaf and it made me cry to see someone other than myself and my family wearing them. (I know the football team was wearing them but I never actually saw them -- so I thank them too!)
Each donation box is in the following businesses: Harris' Pharmacy, Neepawa Pharmacy, Neepawa Furniture Centre, Gill & Schmall, Neepawa Curves, It's Time, Chicken Delight, Neepawa Public Library, The Neepawa Banner and Beyond the Garden Gate. On Friday I will be meeting with Becky (nursing student from ACC who sent me the email) for lunch and to get started on getting leaves in Carberry too! I have a lead on the type of paper I need, now to find more in varying shades of green!

I am quite excited to get this going FULL STEAM! The more I am talking with local people who are either survivors or caregivers the more I want to get the word out there! We need to educate the public that BI's are just as serious, as crippling, as debilitating, as DEADLY as cancer, MS, HIV...
It is hard to listen to family members talk about how they can't find support to help them to help their loved ones.
One man and his wife told me over the phone the other evening about how their son (who was my age) committed suicide after living 5 years with a BI. I wanted to cry as he asked where I was getting my information from! Their son was only gone about 6 weeks when they phoned me...

We need to get more awareness and education about Brain Injury out to the public.

Softballs, ears and faith

2011-06-11T15:01:00.003-05:00

This is Hannah's ear... after it made a connection with a softball at her grade5/6 camp trip this week. The ball luckily for us was thrown and not hit by the bat or else I have a feeling our camp trip would have ended on a fast trip to the hospital in Winnipeg. She was checked over for a concussion and had none but she did have a fast hard sleep about 5 hours after. So hard in fact that my girl friend Jenn was a bit freaked out when she pried open Hannah's eye and there was no response from Miss Hannah...

I think the cartilage on the ear is probably 'smooshed' = the equivalent of a break. We will be heading to the doctor on Monday because the hearing in the ear is muffled. Dennis thinks it is all down to the trauma the ear has endured and I sure hope he is right.

I am feeling a bit anxious about this. There was a large lump behind her ear about 3 hours after and bruising... the bruise is turning yellow now but there is still a small lump... Her ear only hurts to touch if you touch the outer part of it where it is really purple on the 'rim' of the ear.

I am working on having faith in the teacher that checked her out (he is an ex-RCMP officer and has first aid training and concussion training too) that he would have sent us to the hospital if it were needed.

I am trying to not flip out about it and get all "Oh my gosh what if she has a BI!?' but believe me it is taking all I have in me.

Email...

2011-06-04T21:04:00.001-05:00

After yesterday presentation I had a few people come up and talk to me and ask for contact information. I honestly thot that they were just 'being nice'. But this morning when i checked my emails I found this email in my inbox. It was a shock and I have to admit it brought me to tears.
Dennis and I are not sure where GOd is taking us on this journey now -- a shift to the right on the path or a continued direction that we are already going... but we will pray about this email and the offers that are in it and that were offered when I spoke to Becky after the presentation.
Thank you Becky for the email and for the thotful help and blessings you have mentioned.

Jodi,
I just wanted you to know that I thought you did a great job with your presentation today. As I mentioned I lost my oldest son almost 6 years ago in a home accident so I can sympathize with you in a way that many cannot. I have always said that I wish that he hadn't died even if he were brain damaged because at least I could still see him and hold him. Most people think that Im crazy to think that because in their opinion "Ethan" wouldn't be "Ethan" anymore. I think that you are amazing in your ability to see Sam as the same kid he always was. You do this in a non-delusional way, seeing the changes but doing everything in your power to treat him like any other 16 year old. I think makes you an amazing Mom. I too have the guilty feelings when it comes to the way I am with my other children and am a self admitted "helecopter" parent. In our life experience how could we not be? I am however concerned that you are going to burn out. As a fellow farm wife I understand the demands it puts on a family and it is for this reason that I want to help you and your cause. I would do anything to have my child back and since I can't I want a chance to help families who did get the second chance to get the resources and info needed as well as help other families from suffering the same fate. I find there is little help in Manitoba for any tragities involving children and felt very alone in grief and still do during my hard times.

I will understand if you feel this is a journey you need to make alone and will part by just congratulating you on a job well done. You have touched me in a way that I could never fully explain and I thank you for that.

Becky

ACC presentation

2011-06-04T10:56:00.000-05:00

My presentation has now come and went! I was just a 'bit' nervous... LOL but once I got going... it was easy-peasy-lemon-squeezy! I so enjoyed sharing my journey with the students!

I had some epiphanies on my drive in to Brandon, in regards to the activities I wanted to do so that they could get a 'feel' what it was like to be a survivor. So I used a few of Sam's 'issues' and ran with them! I had 5 different snacks to try -- but told the students they were to tell themselves that they were actually something else, and not to say anything. That was about the change in their 'physical' tastes... it was a bit difficult for them to make their brain work the way that a survivor does but they got the point.
Then I gave them directions to the bathroom... but not really. The wound up in the cafeteria. Even tho they knew where the washrooms were they were a bit confused and lost...

Then the last activity was that one person in each group was a 'survivor' and they had to read from a text book, but the rest of the group had the job of distracting the 'survivor' by talking, being extremely close, singing, whatever they could do. This was to see how and audio/visual sensory overload can affect a survivor. Then I asked if anyone retained what they read... no one did.
Jenn (the teacher) asked me to come back and do my presentation again in February for the new students and I said sure! I will try to work on it and do a few changes.

keeping my cool

2011-05-31T08:19:00.001-05:00

HA! I try my best to do this like 99.9% of the time! (btw... about 99% of THAT time I am failing miserably) But I am so frustrated at ... the medical system... the government ... people who just dont get it... my washing machine ... my dishes piling up at the sink ... the weather ... my back ... the weather (I live in Manitoba and of late our weather REALLY sucks so it is deserving to be railed at AT LEAST twice!) ... i am just in a mood I know and I have to get out of it. Part of it IS due to something we learned on Friday. Sam's ped., DR. Goldberg, called on Friday to get back to us (on a phone call from over a week ago) and was fabulous at setting up a lab appt for him. (Sam has been having tremors - as we call them A LOT. ALmost everyday.) Doc. wants to check his Val-ProicAcid levels to make sure everything is good... not too much or too little. The tremors could just be a 'getting used to the meds' side effect... or not. So Sam was to not take his meds this am and then go to school and straight to the hospital for tests then take his meds when he got back to school.... I forgot to remind him about it. SO at 7am.. "Sam take your pills..." and he did...sigh
Then later at 9.30 I remembered... and so he will have to do it tomorrow...not a big deal except that now the Wpg Doc. wont have the results... when we are there.
While I was on the phone with the Doc. I asked him about a neuropsychologist for Sam.A Neuropsychologist is (according to TBI LAW)Neuropsychologists are not medical doctors, but doctors of psychology whose field of study is concentrated on the brain and its functions. Neuropsychological testing is designed to determine the brain's capacity with respect to short and long term memory, abstract reasoning, attention, concentration, executive functioning, motor skills and other cognitive and psychological factors. By comparing the pattern of these results, against the patients pre-morbid capabilities, and correlating these results with the nature of the trauma suffered by the patient, neuropsychologists can, to a reasonable degree of certainty, opine that individuals without an acute diagnosis of brain injury, have permanent deficits as a result of brain trauma.
When I went to the BI support group this month I was talking about feeling stressed and wondering why there is no help for us in the way of a proctor or respite...for when we need it... and the question was asked if Sam had seen a Neuropsych. And then the gasp of "why not!?' was amazing! When I asked Wpg. Doc this he asked the same question... but he also told me that to see the doctor that is in Brandon (which is HALF the drive of a drive to Wpg) will charge at least $1200.00 for the first session! HOLY! He suggested that when we see him on Wed that we will discuss other options... which will be in Wpg... but we can drive to Wpg a heck of a lot of times for the first $1200... sigh... another one of these things that have blind sided us!

WOW!

2011-05-28T08:41:00.002-05:00

The Facebook group that I created Canadians with Traumatic Brain Injuries just made the 100 members milestone!! I put a call out this week to get to this number and this morning when I was on FB I had a pleasant surprise! ONE HUNDRED members!! YAY! I am still encouraging please to join and invite friends since next month is Brain Injury Awareness month and we need to get more awareness and education out there about this! I keep thinking of that old Pert (I think it was Pert) shampoo commercial... She told 3 friends and they told 3 friends and they told 3 friends... So please look for it on FB, and ask to join. (not too impressed with the new version of groups on FB... I cannot invite ppl to join my group...)

I have been busy this week not only working with Dennis and sorting and doing cattle stuff during the day but I have been trying to get out emails & phone calls to radio stations, tv stations (both local AND the biggies-- CBC and CTV) the newspapers and friends and family about next Junes new 'duty' to educate people about BI's. So far one local newspaper here is going to do 'something' for BI Awareness in June, the local access12 have invited me to do a coffee chat with Jim Cockburn about our family's story and mine as a caregiver (that is May 31) and that 1hour episode will run 3times in June. I am speaking on June 3 to some nursing students at Assiniboine Community College about our story (I have yet tho to find someone to be my run thru sounding board on my presentation and I am less than a week away!!!! eeeek!). On Wed. next week we are in Winnipeg for an appointment for Sam we will be stopping in Manitoba Brain Injury Association (MBIA) to show my idea for BI awareness 'pins'. ON their website there is an oak sapling and I am making small oak leaves to wear. (I had this idea last year and when the new daffodils for cancer came out this spring -- I thot-- WOW I was on to something!! I found a great paper punch that not only cuts out the leaf but embosses the veins of the leaf too! Dennis and I are willing to make them and put out the initial cost of them so that they can get circulating -- even if it is just in Neepawa and area. (hey I gotta start somewhere!) I want to see if MBIA will want me to put out a jar for donations to go to them or just give them away.
I had a bit of an epiphany this morning as I made some... I had a few different shades of green and my thot was... put out the different shades for a couple of reasons:
1. it will be easier to buy packs of paper in different shades (and more cost effective then buying individual pieces)
2. every BI is different... they are all BI's but all have a different story to tell! Soooo if there are 3-4 different colours it is in step with the survivors and caregivers!

Of course my hubby had to be the first to wear a leaf and is wearing it proudly...

I told him he grabbed one that I was going to throw out because I had 'knicked' the one part of the leaf... his response was "its ok, my brain is broken and so is the leaf". Yesterday A few friends that own businesses in town said they would most definitely put a box of leaves in their business to help... they offered I never asked!! I was shocked and felt very grateful for them! I will keep y'all posted on what happens with the MBIA! Please pray that they are as excited and open to my idea!

Meet some Heroes

2011-05-25T09:35:00.002-05:00

Jennifer

JerriLynn

Janet

Ginger

Broken Brilliant

Stand

2011-05-23T08:48:00.003-05:00

Lately as I listen to my iPod, I have had a lot of songs really speak to me...
Quite a few of them are Rascal Flatt's songs... Something about this group and their songs really hit home and I am not ashamed to admit that some days they have tears rolling down my face no matter where I am.
This song is so much of what I feel like we are going thru here in our home these days. Not just on the TBI front but on a lot of personal family issues too.
I truly feel like it is Dennis and I against the rest of the world with all that happens in our house, because our family/friends either dont want to see what we are going thru because it is so hard to deal with or they just dont care. Either way, Dennis and I will continue to 'Stand' thru it all and where ever it is that God is taking us on this journey we will do it together... regardless of who is with us.

I have been trying hard the last few months to get the word about BI's out there and I sometimes hit BIG.
BRICK.
WALLS.
But I start again and do what I can. I hope I can get people ~~more~~ motivated to learn more about brain injuries and the amazing stories that lots of survivors HAVE BEEN and ARE GOING thru! They are truly heroes in my eyes. The blogs,books and stories I read of survivors and caregivers makes me cry when I hear how they struggle with public perceptions and lack of help -- especially for survivors like Samuel and Dennis who 'look fine'. I know how they feel and what they are going through.
I do find tho that for me there is a difference that is unique -- where they have one person to look out for... and I have 3. I know I dont physically look after dad -- but I am the first 'go to' person for the care home to call. I am there visiting almost every Thursday and try to make the visit as cheery as possible and deal with whatever is necessary.
I also am aware that I dont have to 'look after' Dennis but we do have some issues that I struggle with and have trouble talking with him about because I am unsure of how to deal with it.
WIth Sam I am the first 'go to' person also and I have some problems with some of the stuff and cant go to Dennis because it is too much like his own issues and I cant always deal with 2 of them at the same time...
So I listen to my music...
cry...
and write on here and the odd time I post it...
Other times I just put on my big gurl panties and get thru it...

"Stand"

By Rascal Flatts

You feel like a candle in a hurricane

Just like a picture with a broken frame

Alone and helpless

Like you've lost your fight

But you'll be alright, you'll be alright

[Chorus:]

Cause when push comes to shove

You taste what you're made of

You might bend, till you break

Cause its all you can take

On your knees you look up

Decide you've had enough

You get mad you get strong

Wipe your hands shake it off

Then you Stand, Then you stand

Life's like a novel

With the end ripped out

The edge of a canyon

With only one way down

Take what you're given before its gone

Start holding on, keep holding on

Cause when push comes to shove

You taste what you're made of

You might bend till you break

Cause it's all you can take

On your knees you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand

Everytime you get up

And get back in the race

One more small piece of you

Starts to fall into place

settling in for the ride

2011-04-22T08:29:00.002-05:00

This week has been, I think, the busiest, craziest week we have ever had!

Starting with that Saturday morning early rising and rushing to the hospital, followed by the looooong wait on SUnday morning for the doctor to give us our walking papers. Monday was at home trying to ‘relax’ as I called the school, cadets and family and filled them in with information on what was new. Answering calls from labs, doctor offices and hospitals...trying to make a bit of sense of the new developments and football practice after supper. Searching online for seizure information and research. Tuesday was spent on making 4 bags of raspberry jam (berries were taken out on Friday and were ready to go on Saturday), baking buns (to get a bit ahead on the buns for calving season), then a trip to Brandon for Sam’s ct scan (a 1.5 hour drive for a 3 minute appt @7.30pm!!). We made it back to Neepawa in time for Sam to go to Youth group -- which put us home after 10pm.

Wednesday was an early morning getting everyone up and ready for school and to the bus. Once everyone was gone Sam and I started our trek to Winnipeg (a 2.5-3 hour drive) to see his pediatrician.

It was in that appointment that I heard something that I have not heard from a doctor since this new journey began. It was that I, Jodi Ginter, Sam’s mom, his primary caregiver, the WOMAN WHO GAVE BIRTH TO HIM... was right about what I was thinking about his seizures. On Saturday as I sat and watched Sam sleep, I began to think and like a huge wave washing over me! Everything that we have been trying to tell the doctors and other professionals hit me like a brick wall. Joshua telling me that Sam had been thrashing in his sleep, the mornings of extreme tiredness, sore body, loss of short term memory. The facial spasms, the twitchy left side movements, the blurry or fuzzy vision at times.The irrational irritability... The emotional rollercoaster... all of it. It was my A-HA moment. I was not crazy and I will admit it -- it was not MY failure, it was the medical fields. They would not listen to me. They ignored my concerns and my thots on Sam’s condition and issues.

SIGH! A huge sigh of relief that came over me!

Then to hear the doctor actually say the words “Sam, I think your mom is right! She is definitely on to something here...” made my day in a way that I don’t know if anyone could ever realize! Yes there was something more than just ‘sleep issues’ and ‘teendom’ that was at play here!

Thursday was another early rising day and off for the 1.5 hour drive to Brandon (this time tho I had Joshua driving!!!) for a 9am eye appointment. Sam’s eyes have been giving him some fun times. Blacking out vision (temporary blindness), foggy out looks, major blurring in one eye, trouble seeing words both far and near. Our eye doctor is fabulous and did a thorough check on Sam’s eyes and he did another field of vision test for added measure. It turns out that his eyes are still fairly 20/20 with a small change in one eye to far sightedness but not enough that we need to think glasses at this point. (YAY!!) ANd his field of vision was awesome! This was all great news from one perspective but from another it was frustrating for Sam. This meant it was all brain activity and will continue and isnt going to be ‘fixed’ with glasses.

We left the eye doctors and headed for our next appointment to the ortho (where we had gotten braces thinking that the ‘sleep issue’ could have been due to his severe over bite that he used to have!). Here Sam was given good news that his braces days are almost over!!! He is wearing one elastic at night now (as long as I can remember to remind him to wear it!) and hopefully by the summer his braces will be off!! I had one very happy boy after that appointment.

We left THAT appointment to head to the doctor about MY stomach issues. She was amazing! After hearing my history with my troubles that followed all the ‘wonderful’ tests I have had to have, she decided to leave well enough alone until a time when it gets worse again and I have cause to see her or take medicine!!! Hallelujah!!! Dont fix what aint broken!! WOOT! She asked about stress in my life and after a quick thot of my last 2.5 yrs and a giggle I gave her a very short and sweet version of my ‘stresses’. She sat and listened, her jaw dropped and I got a wonderful compliment from a doctor. She told me “I am a firm believer in that parents KNOW their kids and we need to listen to them! Keep it up!”

I wont lie... I wanted to hug her! I wanted to record her so I could play it to other doctors in the future! lol

I finished with the doctor, went for some blood tests then the boys and I headed to the mall for some lunch...

and a phone call came thru...

It was the G.I Unit at the Brandon Hospital and if Sam could come at 3 for his EEG!!! “Yup Yup Yup!!”

At 3pm we were at the hospital and Sam was hooked up to the EEG machine. For the third time that day I was telling Sam’s story and filling the tech in on everything and for the third time that day there was some jaw dropping and looks of amazement at my Sammi. I am so proud of how he handles it all and his answers to things... he makes me shake my head and my heart burst!

By 4.30 we were done and leaving the hospital and finishing up a few things before we made our way back to Neepawa for cadets.

That was my week... in a nut shell... now here I sit Friday morning, Sam is still in bed and the house is running as it usually does and here I smile as our new developments and our now new normal is all starting on a day that couldnt be better...

...Good Friday...

the day when our Lord dies for us. His death is the beginning of a new life for us and His miraculous rise is only a few short days away...

Dennis and Sam had a talk the other morning before we left for Winnipeg and Dennis told Sam to ALWAYS remember when he was in Winnipeg and Someone sat with him on his bed. Dennis told Sam “God was with you all through this and in the hospital, so He isnt going to leave you hanging now”. On our way home that night from Winnipeg, Sam turned to me and said ,”you know mom, I have been thinking about what dad said and he was right. God WAS with me and He WONT let me hang now. He will be with me through this all.”

I wanted to cry... but I didnt, instead I just grabbed Sams hand and said “ you bet He will”

What an amazing kid, who KNOWS he has an amazing God!

Appointments galore

2011-04-18T13:29:00.001-05:00

so now we begin a week of running to Winnipeg and Brandon -- ct scan, paediatrician appointment, eye doctor, orthodontist and no school. Thankfully it is a short week and so Sam is only missing 3 days.
I am trying to do some research on seizures and can only seem to come up with epilepsy info. I have read that if there is no reason for the seizure the diagnosis will be epilepsy, but otherwise will it all be down to the brain injury?
After talking with Sam a bit and thinking back there have been mornings where he has woken up very tired and sore, with a slight headache... were they petite mal seizures? Maybe he doesnt have an apnea issue with sleep... maybe it has been smaller seizures going undetected the last 2.5 yrs...Will they be able to tell on the ct scans if he has had more than one? Will Dr. Goldberg do an EEG? was this seizure a one time thing or will there be more? will he be on meds now? if so what else can he be on other than dilantin since he has an allergy to it? Will we know what the triggers are if they continue? If there are no real triggers what about a service dog to help him to be prepared for one?
I know there all seem so silly to think about but I am so tired of being blind sided with new 'developments'. I am tired of ME looking for the answers and the doctors seeming to 'not worry'.
My body is tired and so is my brain. I am so emotionally and physically spent right now ... I am trying to stay strong but for how long?
I was just thinking last week how now I was able to get back to spending more time with ALL our kids and not just seeming to be focusing on Sam. I was planning on spending time each week with each one on our own. Getting back to being the mom I used to be, but now I am not only NOT there, I am a huge leap backwards. I am feeling more like a loser and a failure as a mom at every turn these days.
I cant seem to get enough done in a day to do what needs to be done-- forget about bonding with my other children...or anyone for that matter

Another night in the Hosp, another letter to you

2011-04-17T13:58:00.001-05:00

Sam, it is so hard to believe that right now you and I are back to yet a place we were at over 2 years ago.

You are sleeping in your hospital bed and I am sitting here watching you sleep. My heart is so sore from emotions that have been running today... My head is aching and yet all I can do is wonder how YOU cope with all that you do...There seems to be a hole in my stomach for what the next step will be in our future...

This morning at 6am Josh woke me up with a frantic voice telling me that he thot you were having a seizure -- I jumped out of bed and ran to your room ...

to find your long thin body twisted and convulsing. Your usual smiley face and deepening voice making gutteral sounds and frothing at the mouth. Your beautiful blue eyes rolled back in your head... I told Joshua to call 9-1-1 and then turned back to you and tried to do what I could ---which was nothing ... until the longest 30-40 seconds of my life passed by.

Dad met Josh at the bottom of the stairs and he called 9-1-1 and Joshua called Granni, so she wouldnt be alarmed at the ambulance coming up our road.

I thot that time passed slowly on the drive to Winnipeg in ’08...this morning it crawled.

When your seizure was over you just laid in your bed and my ind raced like crazy over everything I was to do and not to do. You would be so proud of your siblings.They handled everything they needed to do so well. They were quiet and calm and extremely helpful.

It took about 15minutes for the ambulance to arrive and just before they did, you came to and were wondering what was going on. Dad was sitting beside your bed and the furniture was all moved and a few moments later in come 2 strange men. I know you know all of this but I want to record it here (I am typing this on my computer now and I will post it later on the blog) so that you know how things happened.

Since this was your first ever seizure the EMT’s agreed that it would be best to ride to the hospital in the ambulance -- in case you seizure again-- but thankfully you didnt.

Now you lay in the ICU bed again and I am marveling at your strength and resilience at this whole ordeal. You have been charming and polite with the medical staff, caring and thotful with dad and I... you are still my hero Sam.

I sit here and a million things go thru my head. I want to bargain with God to let me take your place, I want to be mad at Him for making you ... and us all... go thru this. But I know there is a reason for it... I want to cry, scream and just throw things. But instead I will sit here and type out my emotions here and I pray for you, me, dad, Josh, Isaac and Hannah. What if this means you are not able to play football? What if you will not be able to got your pilots license? What if you have another seizure in the next month, will you be able to go for your license in October? Will you still be able to handle going to Air Cadet Camp Alberta? Will I be able to handle you going to camp? I have been mentally making future arrangements for us to go to Wpg for appointments (we already know that there will be a CT Scan in the near future and other dr. appointments with neurologists)Did I miss something this time around with this? Was there a warning sign? Can I be strong enough to be who you need as we go thru with this?

I hope you know Sam how much you are loved and being prayed for at this time. We have friends and family that are praying and sending you well wishes. I am praying for you, I am praying for me and I feel so guilty and selfish for saying that. But I want to be the mom you are going to need as we travel this new road, and I know I am going to need all the strength that He can give me to be that mom.

Members Statement by Stu Briese

2011-03-25T07:37:00.001-05:00

This is the Members Statement that Stu Briese (our local MLA) took to parliament in Nov'10.
I have omitted the corrections that were in his actual speech (misspoken words etc).
I am deeply touched that Stu did this, among other things, for our family at this time and for the things he offered to us during our stay in Winnipeg at the hospital. It is encouraging for me to know that there are politicians out there that ARE aware of BI's and the struggles that the survivor and the families face.
Now to get this awareness out more into main stream society.... I am working on it!!

SAM GINTER

Mr. Speaker, in the summer of 2008, Sam Ginter recieved and accidental gunshot wound to the head while he and his brother were tarfet shooting. Sam's grandparents rushed hi to Neepawa hospital. When it iwas discovered that his injury was extremely serious, he was immediately taken to Winnipeg. After four hours in surgery and several days in recovery, Sam was sent home, While he still looks like an ordinary teenage boy, he lives with a traumatic brain injury that create a unique set of challenges for Sam.

throughout his recovery period, Sam has been bright and optimistic. Eeven immediately after his surgery he enjoyed talkig to his family and as in high spirits. After coming home, Sam began the recovery process and satarted setting goals for himself to master. The first was to start going to school by himself in November. After several months of attending school part-time with the help of a peer tutor, he worked hard and by November he had reached his goal.

Another goal was to go to the Banjo Bowl that his family had tickets for. sam was determined to walk up the stadium stairs to his seat and with determination, he made it all the way up. Throughout his recovery, Sam has been setting goals and reaching beyond them.

Sam has had tremendous support from his family; they've come up with creative ways to help him through the recovery period. Using tools like the Nintendo DS and other games, he works on fine motor skills. He does word searches and sed te iPod touch to work on organizational skills. Because the connectinos in his brain need to be remade, he has to re-understand things that he may have already known.Some of the challenges he faces may appear to be common traits but his family understand it is heightened because of the injury and they are very supportive of Sam in his continued recovery.

I want to congratulated this courageous young man and his family for working through the difficult times that brain injuries present. In May I attended the Air Cadet awards evening, and I was thrilled to see Sam receive one of the awards. Because of his bright spirit and determination and with the help of his family, Sam is enjoying life and is an inspiration for many others who are struggling with brain injuries. Thank you.

Limitations

2011-03-22T14:21:00.001-05:00

Sam is an air cadet... wait let me rephrase that... Sam is a Flight Sgt. in air cadets. That means he is serious about air cadets. he has been promoted a few times and once he was promoted TWICE in one year! AND that happened to be the year after his accident! Amazing eh!?
He has also been to cadet camp 2 times since the accident, has participated in almost EVERY activity and is on the drill team. He has marched indoors, outdoors, carried stuff n his back, traveled distances, ate military food, and now that he is a Flt. Sgt. he is in charge some days of organizing activities and what not.
All this is amazing as we (Dennis and I) feel that it was partly because of air cadets that Sam's recovery was as fast and amazing as it was/is! He was treated like everyone else, he used his combat boots to help him to walk (they were very heavy) and to build up his muscles in his legs.
Sam also is on the football team. He plays on the offensive line as a half back.
He is in school full time, granted he just returned to full time this year...but still.
He works on the farm driving tractors, quads, trucks, etc. He helps with all farm work-- calving, chores, fencing, baling, feeding cattle, etc. He is a normal kid for the most part with a few areas of 'issue' that we deal with as it is necessary!

I am writing all this awesome stuff down because he has applied again for cadet camp this summer and I had to fill out all the necessary paper work. Which resulted in a letter coming home to us from the Royal Canadian Air Cadets Head Office (the military basically). The letter was about Sam's medical summary.
Here it is:

-must be within 30 minutes of a physician
-unable to board a small watercraft
-unable to go swimming
-unable to participate in underwater activities
-unable to participate in field training or exercise
-unable to participate in hiking, trekking or climbing
-unable to carry a rucksack or lift heavy loads
-unable to participate in a high altitude activity
-unable to participate in sports or PT
-unable to participate in drill and parades
- unable to fire a rifle or handle explosive devices
-unable to fly an aircraft
-unable to work high above ground
-unable to participate in a ship deployment
-may participate in sports and PT at own pace
-unable to jump with a parachute
-unable to do significant classroom work or studies
-unable to remain alert or vigilant
-requires extra assistance
-requires close supervision
-should wear medic alert bracelet

I finally -- after 3 days of phoning-- got it sorted out and it was explained that there is a new computer system that just starts adding limitations with certain 'issues' the CWO that I spoke too told me that there was actually 126 limitations on Sam! I had to laugh as I told him about most of the ones I was looking at! No sports!? He is a FOOTBALL player! No jumping with a parachute!? So we just shove him out the plane and hope for the best!? lol
The CWO felt bad about it but when I explained Sam's story and situation now he laughed too and I told him that if for nothing else we all had a great giggle over it all! Sam sat and shook his head over the 'limitations' and laughed at no rifles or explosives... he was right back to hunting the fall after his accident!

Some of these are so funny that we are thinking of framing the letter for future giggles!☺

BTW-- ALL the limitations were removed except for wearing a medic alert bracelet!

Me!? Give a speech?!

2011-03-21T16:09:00.001-05:00

Ya.. I know! Probably the same thing I thot when I was asked! "Are you sure you want me to talk!?"
I know I gave a talk with the Parent Council but this time is it different...
First I knew most of those people...
Second, it is a college class of nurses...
In an actual college...
with nurses...
I am trying to wrap my head around it.
I was asked to be a guest speaker to this class and talk about the caregivers end of things. What we think, go thru... you know the stuff that they can't really teach.
My mouth said YES before my brain caught up to it! ☺
I am not worried about it per se, more apprehensive about what they will think of me and my stories... sigh
Honestly I still get a bit worried that people will think I am a complete idiot AND a bad mom for letting it all happen.

Anyhow, it will be in May and so I have lots of time to sit and think about what I am going to say. I am going write it all out and possibly make a PowerPoint Presentation to go with it... we will see what kind of time and creativity I can come up with before calving season starts!

Has anyone reading this life story learned something that they really never knew or were able to use with other survivors or caregivers? Have I wrote anything that made you go "wow!"? Any prayers, thots and/or ideas for this is greatly welcome.

Teens, young adults and thot processes

2011-03-16T11:41:00.001-05:00

Just when I thot my biggest worries were that of Sam, Josh pulls a dumb ass...
If you remember back to a few short weeks ago, my son got his license. YAY for us! Someone to help with driving on and off the farm.He is a very responsible kid, hard working, blah blah blah...
but he IS a 16yr old boy and that should trump it all!
On Sat. night we let him take the car to Neepawa with a 'friend' to go to the movies...
sigh... I was leery about letting them go for a few reasons. One, the 'friend' has a habit of getting into trouble (alcohol, drugs, fights, etc) and while Josh may hang with him at school, this kid has never been to our house or vice versa. BUT we know his parents and they were happy to have their son going out with our responsible son...and we thot "ok we trust our kid and we can only let him go out and trust he will make smart choices"
WRONG!
Not only did he NOT make good choices but the ones he did make were extremely STUPID! It apparently all started on the Thursday before when Josh went to his cousins house while waiting for his brothers to be done at cadets... and he got the cousin to buy a 15 pack of beer for him and his friends for Sat. night.
Then after he picked up friend #1 he proceeded to pick up a friend#2 (female). I have no issue with the girl except for the rumours I have heard about her... not nice. They all then went to cousins house and in 1.5 hours my son drank 2 beer and the 3 'friends' left the cousins house with the remaining 5 beer -- of 15...
Then they DROVE around town for a few hours. Josh then dropped friend#1 at where he was to be staying the night and took friend #2 home too. Then continued home... 30 miles on roads that were that earlier day closed due snow and ice.
He was home 10minutes earlier than curfew with a mouth full of fresh minty gum, talking a mile a minute and wide eyes.
On Monday when we had a full idea of the whole story of what went on, we confronted him with it. First there were lies, then half truths then most of the story came out. I would like to say that we handled it all calmly and ever so cooly, but that would be a lie.
I flipped...
I had him remind me of the ast thing we told him when he walked out the door

"IF you have ANY alcohol, you CALL us and we will come and get you."
"No alcohol in the vehicle"
"BE SAFE"

These are the instructions we gave him... and he ignored them all.
His cousin then proceeds to put the blame and onus on me that I need to look into his friend that he was with as they were not the best role models...(yet SHE bought them the alcohol) SHE thot he could handle driving after 2 beers yet I need to choose his friends... He is under a license probation for 36 months after getting his license-- ZERO tolerance for alcohol! ZERO--- that means NOTHING for alcohol when you are behind the wheel! And she he HE COULD HANDLE DRIVING! I am not blaming the cousin for josh's drinking but I was disappointed to know that she would have rather let him drink and drive than call us to tell us that he was drinking and we would have gone to get him. He made some VERY poor choices

Then we have another cousin and friends that are fueling the fire that we as parents do not have the right to take his cell phone from him because he paid for it... we do not have the RIGHT!? And that their parents never took anything from them and they drove wasted before!
Yep... great role models. We have taken his phone and license for 2 months. Which is nothing compared to what would have happened if he had been pulled over by the police. He would have been charged with stuff and lost his license for a MINIMUM of 1 year and then have to start all over again!

So for now I am back to being a chauffeur for cadets and football, Dennis is driving to and from the bus and Josh is not allowed even in a tractor, on a dirt bike or quad. He has the job of explaining to his grandparents why he is not driving and the whole story and if they choose to give him a bit of what for he will have to stay and listen. He is going to be an active member of this family (not hiding in his room) and he will be polite and engaging with us all or there will be another week added for every time he steps out of line. He is going to have to learn that is is HIS fault he is in the mess he is in. The cousins I am sure will get a bit of an ear full at the next family meal at the grandparents but it will roll off them like water on a ducks back.
Seriously not impressed with our son right now. But I did assure him that I loved him and he just has to stop digging the hole he is in and look at how to get out of it because it is just that HIS hole.

I am exhausted from the few days of stress ...

And here I had been really working on me and getting rid of the stress that I have accumulated over the last few years. But then as hubby reminded me, we have 3 more teens to get thru too ...
sigh, why couldnt teen years be like the fun baby stages ...
when they were small and cute ...

and liked you!?

is this it?

2011-02-24T08:46:00.000-06:00

2 weeks ago I met with the counselor at the boys school and the youth mental health counselor -- Barb, from the Health Unit...
Sam's first visit with barb is today after lunch. I think he is ok with it but who knows anymore...
Josh will be meeting with the school counselor -- we figured for now 'if it ain't broke...' but ever since I told Josh I would have having the meeting he would ask when it was... like almost everyday...
Now since the meeting he knows who he will be talking with and asks daily when it will be... finally yesterday i told him that if he needs to talk to go to Mr. Swanton on his own. Its ok to do that. So he said he might...
This kind of makes Dennis and I wonder...
What is on his mind?
Does it have anything to do with the accident?
Or is it an unrelated issue?
Josh is the 'strong silent' type of guy. He won't tell you anything unless you p-u-l-l it out of him. This is good when it comes to the fact that he is not a whiner about stuff, but when there is stuff -- it is hard to get it out of him....
but when it does pile up...
look out.
He is emotional and it is hard to believe that he held it all in so long...
Today is a day where I am FINALLY home -- all day! So I will spend it cleaning, doing laundry, working on my ecourse and praying for my boys today.

I wonder if this is what I have been feeling has been coming?

All I can do is pray

that GUT feeling...

2011-02-21T17:12:00.001-06:00

I have been struggling again to post on here.
It seems some days as if there is so much going on and then in a flash it seems like it is silly to even write about it... I am not sure where or how to start...
or what to say...
But it feels like there is something brewing...
just that deep-down-in-my-gut-things-are-not-quite-right feeling that I hope is just 'Albert' (my stomach issue) and not something else.
I just got back from a weekend away at a friends house in Moose Jaw. I can't tell Dennis just how much I needed that trip.
I needed to be away from everything that is pulling me down in the atmosphere of our home... mostly because I can't explain it.
It is a strange feeling and maybe it is just me...
Everyone seems to be happy but there is something else...
So I do what I usually do and smile and trudge along with it...
I never once this weekend needed my cayenne pepper pills or the apple cider vinegar but as we got closer to the border my stomach started acting up... and it was such a surprise that it did. Well sort of.... I did take an apple cider vinegar tea for the road in anticipation of something but honestly the ride was so nice and relaxing (I had Hannah gurl with me) that I really didn't think I would need it...
BUT
I did...
I felt that ball...
deep in my stomach...
a tightening in my chest...
I had to resist the urge to cry quite a few times...

I am tired of this feeling
I don't know what to do any more
for anyone
let alone me

Something exciting!

2011-02-05T08:03:00.000-06:00

Our oldest, Joshua got his drivers license yesterday! YAY JOSH!
This is jusst as exciting for me as it is for him!
I have someone else to share the driving with! ☺
Josh can now drive everyone to the bus in the morning (we live 5miles from their school bus stop) AND bring them home! He can also take the boys on Thursday nights to cadets if I can't make it!
sigh...
I am thinking that maybe tomorrow when Sam and Zac get home from Morden that maybe Josh will go and pick them up -- they don't know that Josh got his license yet, so they will be very excited for him!

Now the next one...Sam will be going for his learners in June-ish...
oh boy! ☺

STILL recovering

2011-02-05T07:47:00.000-06:00

This, of course, is just my (and Dennis') perception of things but Sam is still recuperating from his TBI...ummm, yes, STILL. But then when you think of it... he still has 3 small fragments in his brain.
3 small pieces of the single bullet that entered his skull...
(I still have troubles with typing that -- especially after this week)

anyhow, back to my thot process...
Sam had exams this week on Monday and Tuesday. He also went to school on Wednesday to finish some work in Woods class. Then he was home sick yesterday (he missed cadets last night), and today he went into town to his gf house for the afternoon and to wait to leave on a weekend trip with cadets. They are heading to Morden for some fun with the Morden cadets.
We had a talk with him yesterday about having to take ownership of his recovery and that we can't make ALL his decisions about things. He is going to have to learn to watch for his own health issues at some point and what better time to learn about this while at home where we can help him in seeing things. We talked about how he was going to be having an incredibly busy semester now with a heavy academic load and spring football and cadets (nt to mention calving and other spring farm work) So HE made the decision about not going to cadets last night so he could stay home, sleep, rest, drink lots of tea and rest some more! (I was so proud that he took that step!)
He woke up this morning feeling and sounding MUCH better than he did last night, and so off to town we went. On our way to town he says to me,"Mom, my face is doing it again!" and as I turn to look at him the left side of his face is twitching uncontrollably. This went on for about a minute after he told me (and I forgot to ask him how long it had been b4 he told me!).
I started thinking that with it being the left side of his face, and YES this has happened before, that must mean there is some recovery stuff going on in the right side of his brain (where the bullet entered and the fragments sit). So even 2.5 years after the accident we are still dealing with recovery issues, which again brought to mind (I am feeling a bit like the Mouse in the children's book "If you give a mouse a cookie..")that this is what we have been trying to get thru to the school.
He is still recovering!
He is still having fatigue issues!
We are still working on sleep issues!
But no one but us really seem to see these facts...
Sam is a miracle kid, but there is still a struggle that he is going to have for not only a few months but most possibly his entire life.
He may look fine on the outside but there are still things working to fix itself on the inside...

There is another area or issue that I deal with...
When do I, as his mom and caregiver, stop having to wondering if I should be writing this down, watching for this or that, if that is just a normal reaction/teen issue/ life issue or part of the TBI... what if I don't catch something and it turns out to be something that I should have? What if I am worrying about thing that are normal and nothing to do with TBI? When can I stop second guessing every move or thot I have!?

so ...
for now...
I will mark down the week and his twitching and see if it coincides with tiredness or anything else and then let a doctor know.... and see what they say...

regrouping...

2011-01-24T13:00:00.000-06:00

I have decided to go about a lot of stress areas in our home from a different angle.
In regards to Thursday nights with dad --
~ I will be going to a zumba class each evening for the next 6 weeks before I go to visit him. I am hoping this will put me in a better/healthier frame of mind.
~I have asked Joshua that once he has his license (he goes for it on Feb 4 and we are all praying that he gets it!) that he will take time when he has the car to stop in and visit. I am hoping this will take the stress of me being there every week and I will not be his only visitor.
~ I will be praying before going in that dad is in a positive frame of mind and that I will not take his indifference to me as an insult or take it personally.

In regards to Sam and his issues --
~ We are giving him more responsibilities for his future in hope he will start to take ownership of it.
~ We are praying for his emotional healing and the ability to hopefully 'catch up' to other kids in his grade -- when it comes to emotional health, social health and overall well being.
~ We are having him make a more pro active stand on his future education. He needs to choose his courses and his extra curricular activities and deal with the consequences of late nights, missed school work, football etc. in his planning of things.

With everything else that is going on in our home ... I am just giving it all to God. I am at a place right now where I am under too much stress and I am in constant pain and irritation with my stomach. I need to focus on my health for now and let some things (that aren't within my control) go... so this
is
me
letting
go....

God, they are your troubles now. I am giving them all to You and I am letting go. Thank You for that!

Thursday nights

2011-01-20T22:26:00.000-06:00

On Thursday nights I usually go to my dad's to sit and watch t.v. and have coffee/tea and visit with him.
Dennis comes sometimes but our schedule has now changed and it is harder for him to come with me and I miss it.
Dennis is a buffer between me and my dad.
I hate saying that.
But Dennis is the padding that keeps me from falling apart when my dad doesn't know me
or when he scowls
or when he tries to bite
And the last few weeks I have gone on my own
And dad hasn't known me...
This morning I had a call from the PCH and they needed to send him to the hospital for a Dilantin test because he has been seizuring/tremoring a lot more than usual. I hope to be able to talk to someone about the results of that testing tomorrow. But with everything else that is happening in our lives sometimes visiting with dad is incredibly hard.
And then the guilt...
if I were a good daughter I would go and be happy and smile
if I were a good daughter I wouldn't feel like crying whenever he looks at me
if I were a good daughter I would be able to handle all the issues that keep popping up
if I were a good daughter
I wouldn't want to stay home on Thursdays

That was part of my day today...

Yesterday was this...

Speaking with a Child/Adolescent Mental Health worker and then trying to make sense of our
conversation today...
and to figure out how to share this information with the school so we can get Sam's classes for the next 2.5 years sorted out. Trying to figure out how to get the school to understand what a brain injury is and where we are at in the survival end of it all...
The worker has sent our file to Mental Health so that we can individually and possibly collectively work on the trauma our family had/has experienced. A bit late I think but then better late than never?
She made a comment to me about the things I told her and she said "you are an amazing woman! You are doing so well with it all and with everything you have had thrown at you..." she kept going on about 'how amazing' I was and I wanted to yell at her to stop! I am not amazing. I am barely keeping it all together most days. I am no amazing, I need a buffer for when I visit my dad! I cry at the stupidest things, I look at myself and wonder what the heck am I doing!?

I miss my friend...

2011-01-13T22:33:00.001-06:00

Tonight Hannah and I went to see dad and when we got there it was happy hour. So we stayed and visited with day in the common rec room.
He drank his beer.
I talked he mumbled...
Then I started to sing along with the music that was playing -- Crystal Gale, Kenny Rogers, Don Williams and dad was singing with me!
So I started to dance with him... I held his hands and had my feet on either side of his footrest on the wheelchair and I moved him back and forth....
I can't even honestly remember the last time my dad and I sang. The last time we danced was most likely my wedding in '93.
Singing with dad took me back in time...
I was 10 sitting cross legged on the 'dog house' of one of the cab over trucks he was driving.
We were driving into the dark black night
We were singing to all the 'classics" (well they are classics now...)
I could almost smell the semi, the gas...
I could hear my dad singing...
The engine roaring beneath my bum on the 'dog house'...
I wanted to cry.
Since dad's accident (going on 15 years) I haven't had a lot of really close moments like that since most of the time he doesn't know me...
But for about 10minutes tonight I did...
Then just as fast as he was there...
he was gone again...
Then the glaring looks started, and the mumbling, and then the final grunt and nothing...
Hannah and I went back to his room shortly after and just waited out our time...
The aides brought dad back to his room and got him into bed and I thot maybe then he would return
but no
just the looks and now silence
so I continued to chirp away and talk with him
but inside I was crying.
With everything that has happened in the last 2 years I just wanted to talk to him
my old friend
my daddy
...
The drive home was quiet with the kids and I drove in silence trying so hard to not burst into tears.
I feel like I am 6 now and just want to yell
"I WANT MY DADDY!"
But I don't.
I won't.
I can'.t
All I do is smile and get on with life...
What is anyone going to do?

Nothing.

There is nothing anyone can do...
Or anything they can say...
So why bother saying anything...

And all the while Albert (the ulcer issue) is singing and dancing in my stomach...at least someone is happy

ahh me nerves!!

2011-01-10T20:11:00.000-06:00

I have just put the finishing bit on my 'bloggin' for Lash &Associates and I am nervous as all get out!
What if it isnt what they want?!
What if people think I am talking non-sense?!
What if NO ONE reads it!?
Well that last one I dont think will bother me too much because really who but me and a few people read my blather!? ☺

The last week has been just 'peachy' with Samuel. he has been going either a mile a minute or beating the heck outta someone ... and the language... sigh... we are now trying a new tactic. Swearing will result in loss of telephone privileges .. so we will see if that helps.
Honestly this whole 'relationship' thing with him is stressing him to no end. He just isn't ready for one I don't think. But how do you tell a teen that they can't!? Especially when we live 30miles from the school. We can take away phone and computer privileges but how do we control what happens at school during 8.30am-3.30pm? We have talked til we are blue in the face (and you would think that THAT alone would cause him to think things thru ...)
I know that this is normal for teens and blah blah blah but there is a difference. I am not going to go into details but when your child is stressed AND losing weight, not sleeping, mood swings that effect the entire house... its not good. I can hear some people saying "oh is THAT all!? that is just normal teen stuff" but TRUST ME on this one... there is more to it.
I was hoping to get started on some 'me things' in this new year ... and I know it is not even 2 weeks in) but so far I have been too stressed to really concentrate on it the way I was hoping. I can't seem to get my head into the right frame to even figure out seemingly simple creative issues (I have been trying to work on a watermark for my photos and a logo-- and how to put them on my photos)
but I am
just.
not.
there.
I need to get Sam into a better place first... but then I think if I keep putting my interests on hold will there be any interests there when I finally get the time!? Don't I need time for me to recharge so I can help all of the house better!?
I have to admit (and I feel like a real horrible daughter to say this) but the last 2 visits with my dad have been STRESSFUL for me and I have been glad to go home... I just want to be able to sit and cry on my dad's shoulder about everything that has happened in the last 2 years but I can't. He was who I used to tell everything to! And with it being Christmas my memories were filled with our last Christmas together and how excited he was to see and hold Sam. I couldn't pull myself out of that funk this year.
Maybe it IS more me right now but I can honestly say that I am feeling tired of being strong and being the one that helps everyone else out of their issues.
I think ...
it may be time to head back to counseling...

New Year ... New Challenges

2011-01-04T21:41:00.000-06:00

for me this time!! I am going to be a ~~writer~~ blogger for Lash Publishing and Associates! I had gotten some pamphlets from the conference in Dauphin back in May and had looked them up and found that they had blog postings and stuff on thier site... so I emailed and asked if I could get put on the list...and lo and behold if they didn't get back to me and ask if I would like to write a 'blurb' sharing our story every month or so!
Sooooooooo... as of today it was official and I was 'welcomed aboard' to the Lash & Assoc. family!
This means that I will just be submitting a blog like article once or twice a month. I am quite excited to do this for a few reasons. One being maybe I can help someone else who is a caregiver to a survivor (I have experience with a few different levels of TBI), two it MAY just bring a bit more public awareness out about brain injury and three it may bring more traffic to my blog here that may help in both the first and second reasons!
I am also going to be working on doing more with my photography this year. Try to focus on something for me this yea and not so much revolving around everyone else. In the past few years I have really felt lost and not myself and it is time to get back to finding me and who I am before I am totally gone! So here is to the New Year and all the new and wondrous challenges that are ahead of all of us! Maybe once I am focusing on me a bit more I can see more of what is happening with Sam, Dennis and my dad!

Happy New Year!!!

ARGGGHHH!

2010-12-24T09:22:00.000-06:00

Somedays I just want to scream! This morning I sat here and typed out my posting for today -- for a half an hour -- and it said it was saving and then it blipped and BAM! my posting was gone! Nothing in the editing area either...sigh... I just wanted to cry.

It was that it is once again Christmas Eve and once I again I am not of any Christmas spirit. Since Sam's accident things tend to get very stressful here. The noise and busy-ness of the world tend to make Sam irritable, not sleep and just plan grouchy...which makes life for not only me but the rest of the house grouchy and touchy...
With society putting more and more emphasis every year on the "holidays" and not the true meaning of Christmas -- Christ's ultimate gift of Life -- we struggle to help our kids to fully understand this. And it makes things more difficult for Sam who struggles with things anyway.
This year we are doing things a little different and the kids drew names and they are to make a gift of the heart for the name they drew -- make something, give thier time for something for someone else, etc. They seem to have had fun with this. we also are not focusing on presents-- but on Christ's gift to the world, spending time together as a family and relaxing. So no big turkey (as we had stopped doing that years ago) pizza and pj's instead! I hope it helps to get Sam back into a right frame of mind --- and me too!
We received a letter last week from Winnipeg on another psych eval for Sam. It was just to let us know that they will be contacting us in the near future for an appt... so wait, wait, wait.
Joshua also has been to the doctors of late -- he has been having troubles with shakiness in his hands. He went for blood work last week and we are waiting for those results. If they are clear we will be going to a neurologist for testing -- but something the doctor asked Josh is if there was any stress issues he is dealing with. The last 2 years Josh has started a nervous habit of shaking his hand or his foot --ever since July29/08.
when I arrived at the hospital Joshua told me what he saw happen: He turned to see Sam lift the gun up to shoot, he saw Sam get hit in the head with the scope and then fall over... "and then there was so much blood mom" (I will NEVER forget those words or the look on my son's face) Josh had seen Sam get shot but now does not remember it. We have spoken to him about it (what he saw), what he was thinking, we have had them both walk us thru the day up until that moment and never once does he repeat the story he told me at the hospital. Now he says he turned and saw Sam laying on the ground...he doesnt even remeber hearing the gun go off. we have asked if he and Sam were gooffing around, if they wre fighting, if he made promises to God ... his memory of that day is good until the point where Sam got shot...
So we will be looking in the New Year for someone to help Josh too because we wonder if he has (which would be NO surprise) unresolved issues or something.

I am not complaining here or whining (I hope it isnt going to come across as that anyway!) but just when a person would think that things are starting to get to where it isnt a "big" thing anymore... BAM! I am still struggling with what to say to people when they ask how we are doing, because for the most part all they really want to hear anyway is that we are "fine" so it is easier to tell them that. If I tell them more I get "oh typical teen behaviour" BS that makes me want to smack someone! (I seriously wonder what people say to cancer patient parents when they talk about their children and their issues with them... are they as cold and callous? Do they comment that 'oh don't worry! this too shall pass?' or 'oh don't worry they will grow out of it'.... sigh
I have had people ask me how they can pray for my family and I have finally found the answer!
Please pray for psychological healing for us all, for help to be found that will aid in this healing and for people to be more understanding to our situation and not be so lackadaisical in their comments or responses towards us.

Merry Christmas everyone....

My 30 day challenge -- at Day 21

2010-12-08T09:02:00.001-06:00

Something I wish I could forget... July 29, 2008
The day my second son Samuel was shot in the head with a .22
It was a total freak accident and he is doing amazingly
but I still wish I could forget
It is so still all encompassing and all consuming of our lives
And will be for the rest of it
This picture was taken on my cell phone about 4 days after
We had just moved to CK-3 ward
The left side of Sam's face was still paralyzed
He was still very tired
We still thought we were in Winnipeg for a long haul
And when he gets really tired and stressed this lopsided smile will return
He doesn't even remember this picture
And I can't forget it
This picture stops my heart and makes my catch my breath and tears come so very readily
I can smell the hospital
I can hear the noises
I can feel the fear that was still in my heart that I may lose my baby
Then I usually look over at Sam now and it all disappears
And he is with us

This is from my other blog andinmycorner ... it is a 30day photo/life challenge. I found this picture the other day and realized I had never posted it here. So I decided share....

The most wonderful time of the year!? are you kidding me!?!

2010-12-06T14:46:00.000-06:00

I think it is the time of year or something... between Sam and his up and down emotions (well that may be because he is a teen with a BI) and Dennis and his highs and lows... then my dad and his irratic moods... I just want to either scream and yell or sit and cry.
I was visiting with my dad last week (like I usually do on Thursday evenings when the boys are at cadets) and when I went in to see him I was not Jodi... again. I was Lois or Millie (his sisters) or some other name of people I don't know. I try to giggle with him about it but some days it just hurts. I want to just cry and yell and ask "Why!? Why don't you ever know me!?" He will recognize other people easily but not me. He will almost always know Dennis... and my mom and his other family members... but not me. I try to tease him that he has forgotten me but really it just kills me. I am his only child.... his ONLY daughter... and he rarely knows my name. He was not at my wedding and he will argue with me that he was NOT there... and yet he was at Dennis' wedding-- but I was not the bride.
That was last week...
And then there is this lovely issue of teen-dom. Stress of things is starting to take its toll on Sam. He has lost 6 pounds, he isn't sleeping well and he is grouchy a lot. With the Christmas holidays coming and our house being busier with visitors, parties (we just had a surprise party for my mom's 60th), Sam's birthday is on the 16th of this month... he seems to be more tired and less happy. 2 weeks ago I got a glimpse of my old Sam (before the accident) and I had to really work hard to not cry when I did. We were traveling to say goodbye to our friends who were out for a visit from New Zealand and Sam and I had the radio cranked and we were singing loudly and laughing... he hasn't done that in so long. We used to always sing in the car -- then there was the accident and the loud music was too much for him, then the music was just too much (different ranges of tones i think) then when he was finally starting to get used to things and settle into his new personality-- he gets a cell phone. The cell phone was bought for emergency purposes but since he is still a teen it became more of an extension of his arm and his ear.
It started to cause a great deal of stress in his life...which in turn caused him to lose sleep, not eat, and now that we have weighed in -- lose weight (I know only 6lbs... but he is so skinny to begin with that 6 lbs is huge on his frame!) Thankfully we were smart enough to only get a pay as you go phone for him and now he is out of minutes and he has no money so his phone will sit on the counter for a long while until he can learn to handle the stress of a cell phone. We are starting to see glimpses of the old Sam now that there is no extra appendages on his hand ☺ but he is still tired and out of sorts since there is so much of everything else going on too.
I will keep on praying for both dad and Sam...

Brain Injury Essay

2010-12-06T07:42:00.000-06:00

The following write up was done by a local teacher (and our past daycare provider/neighbour/friend). She did a paper for her course on Brain Injury. Just thought I would share it with everyone! Enjoy and thanks again Cheryl!!!

UNDERSTANDING EXCEPTIONALITIES

Understanding Exceptionalities in the 21^st Century: Chapter Fourteen

“Portfolio Submission”

Cheryl Beaumont

Brandon University

Understanding Exceptionalities in the 21^st Century: Chapter Fourteen

Canadian children enjoy sledding down hills, playing hockey, riding bicycles, and riding in vehicles. These everyday activities can result in traumatic brain injuries. Traumatic brain injuries occur when a person’s brain receives a rapid acceleration or deceleration which results in tearing, bruising, or swelling of the brain (Hardman, Drew, & Egan, 2011). Although, car accidents are a major cause of serious head injury, children can also fall, get hurt when playing sports, or be physically assaulted (CBC News, 2009). Once someone has had a previous brain trauma, they are more susceptible to more serious consequences if they have another.

The four main types of traumatic brain injuries include: concussions (a brain injury that is characterized by temporary loss on consciousness with amnesia, weakness on one side of the body, dilated pupils, or vomiting), contusions (bruising, swelling or laceration of the brain), skull fractures (broken skull bones), and hematoma (a blood clot caused by a blow to the brain) (Hardman, Drew, & Egan, 2011; CBC News, 2009). A brain injury may negatively affect a student’s educational performance.

As educators, classroom teachers are members of the student support team. The student must be prepared for the demands of returning to school. Many teachers who receive these students are not adequately prepared to respond to their cognitive (decreased attention, memory deficits, poor concentration, etc.), academic (poor organizational skills, difficulties maintaining school demands, etc), and behavioral (social isolation, inability to prevent socially inappropriate behaviors, difficulties with relationships, etc.) needs (Hardman, Drew, & Egan, 2011). Brain injuries can affect every aspect of a person’s life; however, often without any visible physical symptoms (Manitoba Brain Injury Association, n.d.). This mismatch can lead people to overlook the disability and to misinterpret the behaviors as an individual’s shortcoming.

An unexpected brain injury occurred in small town Manitoba when a boy was injured from a self inflicted bullet from a .22 caliber rifle (Ginter, 2010). The bullet entered into his head and pierced through three lobes of his brain. The bullet remains there as it would be more traumatic to remove it. After surgery, he had a breathing tube, IVs, a pressure monitor, and monitors stuck to his chest and back to monitor his vitals. July 29, 2008 changed their family forever.

Two years after the injury, the parents of this child still have many obstacles to overcome as their child enters into the high school world where adolescents want to fit in and not be perceived as different or special (Ginter, 2010b). It is a time where their son’s tendency to act inappropriately is more than just a normal hormonal teenager figuring out his identity. It is a time of relearning how to act, relearning how to be organized, relearning how to be himself.

It is unrealistic to surmise what this child would have been like without the brain injury. What is important is that all educators being diligent to understand how a brain injury can affect a student’s learning and realizing that each student requires a unique educational plan that plans for success. The educational plan must be conscious of the student’s abilities, talents, and capabilities. Students that have brain injuries require educators to educate them, despite their differences.

References

CBC News. (2009). In depth health: Head injuries. Retrieved on December 5, 2010, from

http://www.cbc.ca/health/story/2009/03/17/f-head-injuries.html

Ginter, J. (2010a). Brain injuries [Presentation]. Neepawa, MB.

Ginter, J. (2010b). Brain injuries [Interview]. Neepawa, MB.

Hardman, M. L., Drew, C. J., Egan, M. W. (2011). Human Exceptionality: School,

Community, and Family (10th Ed.). Toronto, ON, CAN: Allyn & Bacon.

Manitoba Brain Injury Association. (n.d.). About brain injury. Retrieved December 5, 2010,

from http://mbia.ca/wp/?page_id=8

the big one....

2010-11-15T15:42:00.001-06:00

When the brain injury occurs after birth, yet during the developmental years, the adolescent period will still have the usual changes. However, the issues may be somewhat different depending on the level of learning, life experience and cognitive preservation. All adolescents experience some degree of cognitive change as a normal consequence of hormonal changes, such as:

• poor problem solving and judgment
• impaired reasoning skills
• memory and attention difficulties
• mood swings
• disinhibited thought and actions, an inability to judge what is private and what may be appropriate in public settings
• inability to read social cues from others and poor ability to manage relationships

These common problems may be magnified as a result of brain injury, making management very difficult for parents as well as extended family, teachers and peers whom, for lack of understanding, often choose to distance themselves from the adolescent.

Barton, B, Tepper, M. Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health. Brain Injury/Professional. 7(1) 18-20, 2010.

http://www.lapublishing.com/blog/2010/adolescence-brain-injury-sexuality/
Notice the BOLDED italics!? Basically what I have been trying to get people to understand just in general about living with a teen with a TBI... sigh

So basically I have been blind sided again. I had thought that maybe things were going better for us, then we have had a major smack up the head from the adolescence fairy. Teen issues are bad enough but now we are once again having to decipher if it is just that or a TBI issue. I am so tired both physically AND emotionally just from one child... I have to really struggle some days to find the energy to be there for the rest of the kids. The above article's last paragraph did make me laugh tho... people often choose to distance themselves from the adolescent!? Some days I seriously wish I could!

But then the poem " the Footprints in the Sand"poem comes to mind...

ONE NIGHT I DREAMED A DREAM

I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets
of footprints in the sand,
one belonging to me
and one to my Lord.

When the last scene of my life shot before me
I looked back at the footprints in the sand.
There was only one set of footprints.
I realized that this was at the lowest
and saddest times of my life.
This always bothered me
and I questioned the Lord
about my dilemma.

“Lord, you told me when I decided to follow You,
You would walk and talk with me all the way.
But I'm aware that during the most troublesome
times of my life there is only one set of footprints.
I just don't understand why, when I needed You most,
You leave me.”

He whispered, “My precious child,
I love you and will never leave you
never, ever, during your trials and testings.
When you saw only one set of footprints
it was then that I carried you.”

Margaret Fishback Powers

I really feel that kids today are allowed too much freedom for EVERYTHING and that society is making parents feel bad if we don't allow certain 'rights' -- internet,satellite TV, new cars, cell phones,etc -- it is an instant everything society now. And sadly we have allowed our kids some of these but they have always been told that they are a privilege not a right, and they can be gone in an instant. Kids have everything to readily available to them that they never learn to wait for something. They have a fight with a friend on their cell, words are said and can never be taken back again. They never have to learn to deal with life face on! It is all through typed words on a computer or phone. They never learn inflections in a voice to tell them that their words are hurting someone, or that they read a facial expression to see that they are treading on thin ice! (climbing off my soap box now...)

All this comes back to issues with Sam and relationships. We are now 'proud owners' of another cell phone(just in case I ever need to talk to 4people at once☺) , there has been a lock down on TV, internet and iPod usages. We had serious talks this weekend with our son but is he really getting it? OR is he just snowin' us? Are these problems due to hormones or his TBI? Are they down to us or him and his gf? Does he fully comprehend the seriousness of his, hers and their actions?

I know there is a lot of reading between the lines here but honestly I don't know how to put it all into words, I am scared to even try for fear of saying it wrong and having someone 'read' it wrong and then think the worse of Sam ... or me for that matter! There is no actual SEX occurring though just all the lead up and ramifications to this lead up that is happening...
I also know that all parents run or will run into sex issues with their kids and there are as many ways to handle it all as their are kids and parents involved ... I also am finding that maybe it is a taboo subject due to all the different ways that the issue is handled. I don't know of too many parents that want to admit to talking to their teen about sex.
I have been on the internet today looking up TBI and teen behaviour (yes that means sex) and there are a lot of interesting things out there -- but the question is... am I looking up the right stuff or do I just leave out the TBI part in the search engine!? He says he is not ready but then I saw some emails he (and she) had sent and it started to make me wonder... so we confronted him with it and we talked and talked .... and talked .... and yes talked about it this weekend... but did he get it!? I don't think so. I think he said he did so he could get his folks off his back...
SO now the problem has become how and what to say to him so that he will listen and get it. There are a myriad of issues that are all involved here but I can't discuss them all or even want to begin to get into them... but please believe me when I say AARRRGGHHH! These darn oven mitts are making putting puzzle together in the dark a bit harder...

My daddy

2010-11-07T21:02:00.001-06:00

You tucked me in, turned out the light
Kept me safe and sound at night
Little girls depend on things like that

Brushed my teeth and combed my hair 
Had to drive me everywhere
You were always there when I looked back

~Miley Cyrus "Butterfly fly away" lyrics~

I find that it never rains but pours...
It has been an unusually good week with Samuel but with my dad not so much.
I have seen him twice this week and both times he was not in good moods.
He was fairly grouchy -- which involves him not only NOT talking to me (which is not a normally big endeavour to begin with) but the look starts and continues for a while (most of the visit). The look is one that says "what the heck is wrong with you!? Get out of my face!" I am being VERY generous here in what I feel the look says to me but I cant even bring myself to type out what I feel he is thinking when he looks at me with this look. He was also in a continual yelling mode... which means he will start with "I love you." that with a fast graduation makes it to "I LOVE YOU!!!!" yelling but the look says anything BUT I love you. He will start this and it can continue for anywhere from one or 2 times to a full out 10-15 minute full scale yell fest.
Then the tremors (some people in the medical profession call them seizures but not really) can start.
Some days visiting with dad is great -- especially if Dennis is there. Dad seems to relate better with him. Dennis and my dad had met maybe half a dozen times after we were married (and about 3 days BEFORE we were married) -- and yet my dad will laugh, sing and talk with Dennis. My dad was at Dennis' wedding but not mine -- sometimes I tease Dennis about his first wife, and hope that she left him money! lol
My dad rarely calls me Jodi -- I am usually some other female from his life, most times a sister, but never my mom - Debbi(whom I look a lot like).
He never calls Hannah Jodi either...(who looks a lot like me when I was her age...)
It is very odd...
The whole thing...
It hurts some days when he doesn't know me or when I tell him something about our past together he will deny it.
But my dad's 'accident' is what helped me (and still does on daily basis) get through everything that we have had to do with Sam and with some things I have to deal with with Dennis too.
He is one end of a spectrum and they are at the other end.
My dad was my daddy
He was my biggest fan
He was my greatest friend
He was who I talked to 3x's a week
He would call me during the day to tell me a joke while he was on lunch break at work
We would talk for hours on a Sunday afternoon on the phone
He had huge flaws -- but don't we all
He had big problems -- who doesn't
I know that not all little girls used to think of their dad's as their knights in shining armour but I did
He was a truck driver, so he was away --a lot -- most of the time actually
He may not have been the greatest husband but
He was still my daddy
and
I
miss
him...
That darn ambiguous loss thing -- he is here physically but mentally my dad is not there anymore...
and I MISS HIM!
I have dreamt about him and talked to him in my dreams but when I wake up I don't remember his voice.
I have tonnes of pictures of him but some days I can't remember what he looked like.
It hurts too that my kids will never get to know my dad's wicked sense of humour, or his generousity, or his sense of fashion, his pride for his family
My kids will never get to ride with papa in a truck or on his motorcycle
They will only ever know him as the papa in the wheelchair that you have to be careful that you tell him what you are doing when you are around him or else he can be startled and start to yell or have a tremor.
He is the guy that you don't just hold his hand or he wants to bite yours.
He is the guy that might know your name today almost always with a bit of prompting
I just miss my dad and after the last few visits I have had with him it just makes me miss him more.

wait .. is that!? Yes, yes it is....

2010-10-25T08:53:00.000-05:00

I think I see the light at the end of the tunnel with Football Season! Practices this week, game tomorrow and then again on Saturday -- and then we are done!

sigh...

Then I can try to get back to normal. I will be home more, which means my house my be able to be cleaned totally in one day. I might be able to get some baking done (I am told that Christmas is coming up soon!l☺l)
I can maybe also get organized on a few projects here at home -- recovering dinning room chairs, making curtains, blah blah blah...

But for the most part I am just looking forward to getting back to being 'just mom'. Maybe be able to spend more time with the kids that isn't on a dead run or just in the van/car...

we have been noticing some great changes in the boys the last few weeks. They are more apt to pitch in or share an encouraging word to someone. Amazing...

I have a quick story to share that still brings a tear to my eye. After our last Friday night game, we went with some of the team and a few parents for dinner. There was a lot of laughing and carrying on from the boys and some great conversation with parents. Then one of the dad's asked the boys to each stand up and make a statement of one thing they liked about that nights game and one thing they thought they could work on. All the boys spoke with such thoughtfulness. It was amazing.

Later I made a comment following someone who talked about them being able to do anything they put their mind to. I just told the boys how at last years Winnipeg game Sam was there and the year before that (in 2009) Sam was relearning to walk on that same date (Oct31). I just said that (not trying to embarrass Sam or anything) if they put their hearts and mind to it that YES they can do anything! Anyhow... after when everyone was leaving to go home one of the players girlfriends came up and told me (with a tear in her eye) that she so appreciated me sharing that story about Sam. That she didnt know the story and it was so inspiring to hear. She almost had me crying. She told me that she texted to her boyfriend (who was sitting next to him) what Sam's story was and when he told her, she said she shocked as she wouldnt have been able to tell. She talked to me for a few minutes about it but her thanks of sharing just shocked me and left me dumbfounded.
Sometimes I feel so "this is our life" now that it alarms me when it shocks me that others are shocked and blown away by our story... very grounding but it also makes me emotional and very thankful to God for all He has blessed us with.

Frustration

2010-10-07T10:08:00.000-05:00

Don't you just hate it when you are treated like you are not 'intelligent' enough by someone, or that you do not know what it is you are talking about--especially when you not only KNOW but LIVE the very thing you ARE talking about!?

I mean when I tell someone about TBI issues that are happening to my family members and in my house I would think that the person I am talking to would understand that I KNOW what I am talking about! I am not Joe Public that maybe has only HEARD of TBI, I am not a person that is on the outside of it looking in... I am LIVING it every freaking day!

And not only with one survivor but THREE! Yes people, three! I have done so much research and living with a lot of issues that survivors deal with! I am not an IDIOT about this stuff! DOnt try to demean me or my observations! I know when things change and what that will mean to each survivor in my life!

I KNOW what that will mean in MY life! I know what needs to be done to try to get the person back to a normal balance -- whether it be a change in physical position OR mental position OR more sleep OR a change in what is normal for other people without a TBI!

On a daily basis here I deal with 2 survivors and I know each of their moods and idiosyncrasies. I know that one is a teen and that he will deal with normal teen issues BUT he also has 3 small metal fragments imbedded in his brain that have severed nerves and destroyed some normal brain patterns-- but I LIVE with him and know the difference between 'normal' teen behaviour and TBI behaviour!!! Sadly, they are so closely linked some days that a lot of people will tell me that n"oh its normal for a 14yr to do that!' but please be rest assured that there is more to it -- that there is a distinct difference that maybe can only be seen to be understood.

Sam has been sundowning this week and it is VERY noticeable here at home. He is such an Oscar Awarding Actor at school that no one sees it. But rest assured that when I tell you that there is something wrong then PLEASE believe me and don't make me feel like a schmuck and try to belittle my observations-- not just mine but Dennis' too! Please don't think that by saying it is 'normal' teen behaviour that you are in any way making me feel better.

You make me feel stupid, insignificant and useless. I know you are the professional but I am the MOM!

I am the WIFE and I am the DAUGHTER!

I am the person that looks after them.

I am the person that looks for methods to help them to get as close as possible to the person they were BEFORE their TBI.

I am the person that sits with them and listens to EVERY word that they say and DON'T say about what is happening in their heads!

I am the one that holds their hand, cries with them and for them!

I am the one that loves them TOTALLY UNCONDITIONALLY!

I loved them all BEFORE and AFTER their injuries and I will love them for the rest of MY life!

I will be their biggest advocate when they need one.

I will just be whatever they need WHENEVER they need.

I will just be....

Please don't make my concerns for their well-being to be small or insignificant just because YOU have gone to school for years, have read an article on something, have letters after your name, you work with 'normal' teens or feel that you KNOW better just because.