Unsung Hero

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

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

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

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

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

xoxo

Just a quick update!

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

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

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

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

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

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

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

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On a more cheery note:

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

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

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

Am I getting thru...

The number of head injuries in this house keeps growing and I am getting tired.

Joshua was a work 3 weeks ago (he works for a local farmer) and while they were filling up an inside tire on the hay trailer it blew out. Josh's head just happened to be nearest as he was the one going to take the air hose off the tire. There was nothing 'wrong' with the tire and they didn't over fill it -- it was just one of those freak things. Now, in our area most people know that head injuries are a big thing with us (no kidding...)  and that I personally take them VERY seriously....

.... apparently my oldest son does not realize this. He did not go to the hospital right away (hospital is only 10minutes from his work), I am not sure what (or if) his boss said to him but he drove home 20 minutes after finishing the rest of his shift, a major migraine and ringing in his ears, light and noise sensitivity and just a general 'off' feeling....

major migraine....

ringing in his ears....

light and noise sensitivity....

feeling 'off'....

This happened on a Monday and it wasn't until WEDNESDAY that he went to the hospital to see about it -- due to headaches and ringing still in his ears. The doctor there told him he had a concussion (no kidding...) and no work or a week or so, make an appointment with our doctor and if things get worse go see our doctor straight away.  Joshua saw our doctor the  following Friday and was sent for a CT scan the next Friday (which was the day before yesterday). The doctor will get the results on Monday (tomorrow) so we will wait to see what is happening.  Josh is still experiencing some headaches and ringing every once in a while, too.

After all we have been thru with Sam, Dennis, Dad and Isaac, I would have really hoped that Josh would have taken things a bit more serious and headed straight to the hospital. He is very lucky on quite a few levels in regards to what happened and what the outcome could have been. I am hoping it is mostly just down to him being a 'man' and an 'invinsible' 18 year old one at that... but am I doing a well enough job in spreading awareness and making people realize just how serious concussions and any head injury are!?

Dennis and I sat here one day and in my family alone I have many (seven at last count) family members with head injuries, all ranging from mild to severe.  Am I getting thru to anyone? Does anything I say make sense to anyone and they are taking the precautions needed to protect their brain and their future?!

this is not that post...

this is my motto these days...

Soon I am hoping to write a post that is more cheery and upbeat and filled with rainbows and unicorns... but this is not that post.

One day I will write a post that says someone is actually listening to me and believes what not only myself but the rest of the family  and his teachers at school sees...
but this is not that post.

There will come a day where I can say that I fully trust and have faith in our doctors...
but this is not that post.

Ever since Sam has been diagnosed with seizures we have dealt with so much that we are exhausted. Looking back over my posts from last summer/fall and reading how once Sam was on these lovely seizure medications how he has slipped further and further from us. His moods are severe and extreme, his tiredness is NOT typical teen behaviour, he doesn't eat yet is gaining weight, he doesnt exercise as he has no energy most days to get up the stairs to go to bed!

There have been days of violence towards siblings, verbal abuse towards siblings and Dennis and I, running away episodes, depressed days where we were scared to leave him alone... not pretty days to say the least. This last week has been one of those kind of weeks...
Monday he left school in fine moods, nothing happened on the bus (so we are told), the kids all came home, had a quick talk with me about what needs to be done for chores in the barn, and away they went ...
10 minutes later I recieved a text from Josh that Sam and Isaac were fighting and I was needed. Out I went to help. They were not fighting anymore and when I asked what was going on, Sam  proceeded to punch Ike in the chest and then the two of them counldnt really say what started it all. Then Sam suddenly walked away to the house where he packed a bag and was leaving.

No one understands him, we dont 'get' anything and he was outta here. We tried reasoning with him, telling him that if he was determined to leave he needed to call CFS and let them know he wants out. He yelled about it all and left ...
again
no meds, no wallet with ID, no medic alert bracelet (his broke last week and we are waiting for a new one), he doesnt have a cell phone, no money, no clothes.... nothing
so off he went and since we didnt know what to do anymore we called CFS and they directed us to call the RCMP. They said they could do nothing for us unless we want to report he was a danger to himself "so just follow him and keep him safe"
... so that is what we did. We were able to get him to talk to us for a few minutes in the van to learn
 his plan was to walk to Alberta to see a girl he met 2-3 years ago at cadet camp that he has been talking with on the phone for the last few months.  Then he got verbally abusive to me again and I told him to leave the van and we would continue to follow him.
 He got out and turned for home.

I am sorry but if this is typical teen behaviour then every other teen I have worked with are not 'normal'.
I did more research about the med Keppra he is on and this is what I found: (what Sam experiences are all in bold red)

KEPPRA

Common Side Effects

• sleepiness
• loss of strength and energy
• dizziness
• anxiety
• nervousness
• irritability
• other mood changes

Serious Side Effects

• decreased ability to cope with daily life events
• depression
• thoughts of suicide
• severe anxiety, agitation, or confused thought

VAL PROIC ACID

Common Side Effects

• tiredness (sometimes with slower thinking)
• dizziness
• upset stomach
• vomiting
• tremor (shaking of the hands or other parts of the body
• hair loss
• weight gain
• changes in behavior (depression in adults, irritability in children)

Serious Side Effects

• weakness, sluggishness, swelling of the face, loss of appetite, vomiting, or yellowish eyes or skin, especially in a child under 2 years of age (possible liver failure)
• pain in the abdomen, upset stomach, vomiting, or loss of appetite (possible disease of the pancreas)
• easy bruising, nosebleed, or other abnormal bleeding (problems with clotting)

I just wonder how many side effects does a person have to exhibit before they will look seriously at possibly changing the meds?! Sam has experienced all of this since the beginning of the seizure meds and now it is becoming increasingly worse.

Dennis apoke with Dr. A (neuro)  yesterday and explained everything to him and next week Sam will be starting to be removed from Keppra and on to CLOBAZAM for 6 months and then they will put him on Mylosine after that. So we can expect seizures and Sam is not to go for his learners permit (not a major thing right now) so we will see how that goes.

I also spoke with our family doc yesterday (Dr.T) and he says it is a combo of 4 things: teen years, meds, head injury and me...

yes me... I am caring too much and I need him to be a kid... no kidding!? really!? I am to let him go out and be a teen!? who knew!?  Sam has a busy social life! He is busy with cadets and does things with friends, visits with family (cousins and grandparents etc). He doesnt go out and party or even go to the movies too often but that is because it is a $$ issue and a distance thing! We have 4 kids to support and run after, sometimes there is no money to hand out so they can have everything they want. We encourage all our kids to get out and go hang with friends, but they choose not too some days so do we force them?!

I am so tired of people and doctors telling me that I need let him be a teen -- WTF do they think we are doing!? It is hard to get him to go to a friends house if they dont invite him or they dont except invites to our house. how do others know what happens in our house? do others know that we try to get the boys to go out but they choose not too.

It is one of those damned if I do and damned if I dont things again. The doctors (and other helpful people) tell us to do things, so we do it, then we are wrong or they ignore what we say is happening. Or if we let Sam be a teen and something happens it is "why did you not do this" (because you told us not too) or "why did you do this" (because you told us too) or if we GASP try to do it another (aka- think for ourselves) we get "what!?" 

I agree with my friend Marianne who says that the doctors are just 'practicing" medicine... but i beleive they need to 'practice' listening to the patient and caregivers just as much (and as fast) as they are ready to prescribe drugs....

if i could turn back time

... somedays I wish I could turn back time, back to the summer of 2008.

I would have had the boys come home the day they were initially expected to and not agree to another week.

But I can’t so I have learned to keep moving forward.

This past week with Sam had been the perfect storm... he was not sleeping well, he forgot to take his meds TWICE on two separate mornings, he was not eating, he was argumentative and over feisty. We all saw this and the penny dropped a little too late. 

We were trying to talk to him yesterday and he said he was leaving. He packed a bag and left. No meds, no phone, no wallet, no plans on where he was going. He just left. He hugged us and even tho we told him that we wanted him to stay, that if he felt he had to go to please let us know where he was at. He agreed...

.... and he left

.... on a stormy, snowy, windy day

we watched him walk down the driveway, turn south and then disappear. we called my mom to see what direction he was going but not to call to him. Then Dennis got in the car and followed him from a distance. 

Sam walked for quite a few miles and then for whatever his reasons were he turned around, Dennis stopped the car and Sam got in. Dennis told him he loved him and Sam said “I know” and that was it. 

Sam came home, went straight to his room and crawled into bed.

The last year or so we have been focusing more on the epilepsy stuff as it was more ‘something we can try to fix’ and we let that sideline the TBI issues -- and it all came to a head yesterday.

Sam had the mother of all brain injury moments. The week before his brain was basically telling him that right was wrong and wrong was right. The brain would not turn the switch back either, no matter what we had said or did. His brain told him yesterday morning that no one cared about him and he was better off going... so he left.

I don’t know what we can do in these situations other than let him go and watch from a safe distance for him to realize his brain is lying to him. 

We explained it to Josh, Hannah and Isaac as if he had had a seizure but without the shaking. His brain rewired itself and he had to fight to get it straightened out. I told them that they know how they struggle with everyday issues and growing up -- well Sam does that too but he also has his brain fighting him AND he is on a lot of medicines for his epilepsy. It is work for him to get thru each day and none of us can even begin to know how he struggles to stay ‘normal’.

I am not sure if we handled it right or not. I do know that my heart broke as I watched him pack his bag, as he told me no one cares about him, how he cried as he left. I sobbed when he hugged me and told me goodbye and I held him tight -- then I let him go. I knew what was going on and I knew there was not a thing we could do for him but pray.... 

so I texted and called a few friends to pray for him and I sat and prayed 

His brain is working the way it should... for now. 

But it will happen again and again thru out his life. His brain will rewire itself and wrong will be right and right will be wrong. 

I just pray that we find the tools for him to use to do his own ‘rewiring’ before it gets to this point again. 

It's 'Blue Monday'...

... 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.

coming clean

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...

Upcoming week ....

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...

Times they is a changin' ...

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 

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

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.

janglin' nerves

I am typing this from my van outside the public library tonight--waiting to go to the elementary school/trying to hide from anyone that would know me --aka the kids/trying to find my sanity... sigh.... nope not here either

I am giving a presentation on TBI tonight at our elementary school... and I have lovely butterflies in my stomach right now! I have on my computer what I want to say but I just hope it comes out right and  not as jumbled as it feels in my head! BI's before but never to a group of people... I hope I am able to keep not only my emotions in check but my info too!

Things have been fairly hectic still at home but we ARE seeing the end of the calving-- YAY! So hopefully we can get back into a normal routine with the kids. I have to be honest here and say that I really do feel that I have not been the best mom I could have been these last few weeks. I am always ready with an excuse as to why I am tired or grouchy (answer here is typically running with calving with Dennis, football with boys, drivers ed with Josh, Air Cadets with Sam and Ike, cooking, cleaning, dishes (my dishwasher is on the blink GRRRR), blah blah blah...) there are a million reasons why. But today it stops... HERE!

I will be working better to stay on top of the boys with their homework (since spring football season started we have been slacking), their rooms and laundry, spending time with Hannah, and crossing fingers here-- doing more baking again!

Does anyone else ever feel like they need to have at least 3 or 4 of themselves running around-- or have a 'plasti-mom' life? How do others do it? I am seriously assuming that I am NOT the only worn out, tired to the bone, sick of it all and let's do a road trip mom out there?!

 .... am i?

So here it is... laying it out there for all to see and to confess to...

 how do you stay sane?

how do you keep it together when you feel more like unravelling?

Come on people... give me your best answers!!! are you a closet chocoholic?

Do u tie your hubbies socks in knots when he ticks you off?

Do you write stuff on the tv dust and blame it on someone else?

LOL looking back at this list, people may think I need to be committed (I  honestly don't do any of these things--- but I might start☺) but if someone is willing to have me committed for a bit--please do not leave a forwarding address to anyone...I dont want visitors to disturb my quiet time! ☺☺☺

Interesting tidbits...

At the moment my house is quiet, Dennis and Josh are out with the cows and there are still 3 kids in bed, So I will take this time to update a bit on the conference (as much as I can until the rest wake up.)

Tuesday morning this week, I drove to Dauphin for the conference and as I sat and listened to the story of the lady that was driving with me (she had read the article and has a son with an ABI, she asked if I would mind a partner for the drive up) I was thinking how, "Wow, her story is so different from any of the survivors in my life, but she 'gets' what I talk about!" Then as I was sitting in Dauphin, listening to other stories around the room and then the other thoughts started "I don't know why I am here. Sam is not even in this 'league', maybe I am making a mistake about being here. I should have stayed home and helped Dennis. I feel so silly sitting here thinking that Sam's issues can even begin to compare with what some of these people are dealing with..."

Then the speakers started... and as I sat and listened and learned (ya I was shocked too!), we may be miles from where we were in the beginning but we still have miles to go in other areas, big areas, small areas... and then there is the' territoried' area we haven't even begun to 'explore' yet!

I learned about AMBIGUOUS LOSS.

AMBIGUOUS LOSS-- (defined by Dr. Pauline Boss) an unclear loss either physical absence with psychological presence OR  physical presence with psychological absence.

 This is something I had felt for years with my dad but people would say I was 'crazy' to think like this. I have always felt that my dad  - the person who was my dad- died 15yrs ago and now the man who is left is still 'dad' but not the man I grew up knowing.  This is ambiguous loss.  My dad and Samuel are both still physically with us but both are different from how they were before their brain injuries. My dad is obviously more so, but there is still a loss with Samuel too.  It was so uplifting to hear that I was NOT crazy (ok just not for this area☺) and that it is a 'normal occurence' with family and caregivers. I actually have 2 friends who BOTH told me that it was HORRIBLE for me to feel that my dad was gone, especially when e was right there in front of me! But I am sure that if everyone sat and thought about it, we have all experienced some form of ambiguous loss at sometime. It can happen even when someone does die, but eventually you are able to work thru te grief and go on, other times, like with a BI survivor (or probably ANY survivor), it is hard to 'get over it' when you live it daily.

Here are a few DID YOU KNOW tidbits...

ABI is one of the most common causes of disability and deaths in adults and is the leading cause of death in Canadians under the age of 45.

The annual incidence of brain injury is greater than that of Multiple Scleriosis, Spinal cord injuries, HIV/AIDS and Breast Cancer combined!

There are 3 times as many deaths from BI than from AIDS in the USA in a year.

There are more BI every year than ALL types of cancer combined!

Every Year in Canada, over 60 children will die as a result of bicylce related injuries, the majority from brain in jury.

22% of people with a BI will never leave thier homes.

In Ontario, 92% of men and 100% of women who sustain a severe BI never return to full time employment.

Bicyclists wearing helmuts reduce the risk of a BI by 88%.

Many people who previously would have died from thier BI now surivive, but with a diminished capacity for living.

More than half of Toronto's homeless have suffered a BI - and 70% of those did so prior to ending up on the street!

After one BI, you are THREE times at a greater risk for a second BI and EIGHT times greater for subsequent injuries.

 After reading these it really makes me wonder why there is not MORE AWARENESS out there about ABI/TBI!?  We need to spread the word and get people learning about this! Learning that BI's are nothing to be ashamed of and there needs to be more support to survivors, famiies and caregivers!  Get educated and spread the word!!!!

(I am now stepping down off my soapbox and going to begin my morning... with a cup of coffee, a handful of TBI papers to read and sit on my swing on the verandah! Happy Saturday!!!☺)

The News Article on Sam

Well here it is -- as 'promised'.  I couldn't figure out how to put the .pdf file right on the blog, so you will need to go thru the link.

sams press article

It was mostly right, but where it was 'wrong' was dates for the TBI conference (and I will get some info from that on here as soon as I have time to not only  get it on the 'page' but to also gather my thots and proof read it first so I am sure (HA! as sure as I am about anything these days) it isn't blathering...)

Enjoy the article! My favorite part of it (other than the great picture of Sammi!) is that it is written so simply.  Whether it was meant to be that way or not, I thot it was great considering it was an article about Brain Injury and it wasn't filled with a bunch of 'mumbo jumbo lingo'.

Uh-oh...

Just when I thought we were getting thru to him.... his report card comes home AND football season starts -- all on the same day. **sigh**

A low not passing mark, in English... to be fair to him tho I have been emailing teachers every week so we are able to stay on top of his work AND we have tried to meet with teachers (so far all but 2). But when I email one of the teachers I get no response to my email -- did they get it or are they ignoring me? One teacher I can't get an email to them... keeps coming back to my inbox. I will have to make arrangements to meet with the teachers again this week and let them know I NEED them to respond to my emails with his work thru the week, or else he is going to fail subjects. When we know what his work is, we can stay on top of it -- Math and Social have proven this. I know someone is going to say "well he should tell you OR know  if he has homework..." and my response is "yes, he SHOULD know...but then again, the whole purpose for this blog is because my son has a brain injury! Where as most people might remember things like that -- he may not-- then add that he is a typical teen boy, he may try to get away with things if he thinks he can. 

Sam knows that if his marks suffer there will be no football... which will make our lives all very unpleasant. We sort of let him have his run with it last fall since it was a major goal he had set for himself, but now he needs to buckle down and get serious about not just working but working at remembering to work! I apologize now for my future rantings about homework and football-- but then again, no I am not something I learned last night is that as caregiver-- I have to rant in a safe forum/environment so that I don't blow on those that I am caring for... so there!  ( please know I love you for listening!☺)

SO!! Yesterday was the ABI/TBI conference in Dauphin (as I have been talking about for a while now) and it was simply amazing! The speakers had so much great information. The survivors had amazing insight to things and other caregivers were just so helpful to talk to and listen to! I learned so much yesterday and last night. I will try to post a lot of things here in the coming days, as time will allow me! Today I will just post this wonderful poem. It is not about TBI, it is just about when your child is different. One of the caregivers read this out last night and it made me cry and smile. Enjoy!

"Welcome to Holland"

By Emily Perl Kingsley, 1987.  All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

as far as days go...

The last week has not been extremely 'stellar' by any means-- again!  I have definitely been trying to NOT eat my young ... ☺

With the BI conference coming up on us quickly, Samuel is now claiming to not want to go. So I said he could just go to the one day on Tuesday so he could make it to the banquet and be able to make some connections with other survivors. He readily agreed but now is baulking as football practice starts on said Tuesday and that is fitting for uniforms and such then. Now he not wanting to go AT ALL.

So do I allow him to stay in school and go to football or do I have him go (trying to get football fitting the day before-- if possible) so that he can take some ownership of his injury... I don't want to force him but then again, if  everything were always left up to a teen life would be nothing further than pizza, video games, FB and texting.

**sigh**

I want him to WANT to go. He has admitted to getting a lot out of his meetings at the groups we go to in Dauphin and Brandon-- and at first he didn't want to go there either...

I am praying that he will make a sound decision and I have been praying that God will help me to make the right on this too.

**sigh** being the parent sucks sometimes most times -- these days anyway.

Not all issues in our house revolve around BI's. Some of them are because of other things. I had taken Josh into Winnipeg on Tues. for an appt. involving his tailbone (this is 2 years after he had broken it). It looks like I have to take him in (when a date is set) to have a procedure done to 'fix' the tailbone. It is not healing but then how can it when your 6'2" teen will NOT use a rubber OR pillow doughnut to sit on?! Then you have to listen to him complain about the pain in his 'butt' because of the non-use!? ( I am getting gray hairs as I type over this one!)

Then lets add another 12yr old boy AND a 10yr old girl -- both at the cusp of puberty!!!!!!!!!! ARGGGGGGGGGHHHHHHHH

It is seeming that my days are filled with bouts of crying for attention, crying out of frustration, crying from fear of losing my mind....

**sigh**

motherhood is grand....

On a 'brighter' note... the Neepawa Press article on sam came out yesterday. I had forgotten all about it! Seriously! When I picked up the paper last night -- there was a small picture of Sam on the top header! He was a FULL PAGE story on page 3!!! Another keeper for his memory book. I hope that people will read it and maybe think, ask, research about ABI/TBI's and become more educated. (if you are stopping by my blog here because of the article in the paper-- please say 'Hi'! I love to get that 'ding' from my email that says I have a comment to approve!☺)Sam's story followed right after the story about the man in Neepawa that was murdered on the weekend-- shot in the head. So maybe it will work as a reminder that not all people who have severe injuries are all fatal?!

I will post the article when I get it. The paper said that they would send me the .pdf file of it so I could post it here for those of my friends and family who couldn't read it via the paper!