Land of Confusion...

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

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! 

 I

The Banner -- Brain Injury Article

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!

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

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

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

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...

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

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

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!

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

Jennifer


JerriLynn


Janet


Ginger


Broken Brilliant

Stand

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

Oh

settling in for the ride

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

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. G 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

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

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

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?!

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

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?

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...

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!

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

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...

 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

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!?