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

Faith Hope Cure

Dennis and I bought 250 purple silicone bracelets with Faith Hope Cure Epilepsy Awareness on them to help spread awareness of ... well Epilepsy in the month of March.

We gave 200 of them to the high school to use for Global Purple Day (which March 26 -- but since our school will be on Spring Break they will be doing Purple Day on March 23) The student council will be selling the bracelets that week and on the 21st there will be an assembly for the 7th graders about Epilepsy and they will be given a bracelet.

The other 50 bracelets I put into 2 businesses in Neepawa- and area available for a donation. One is Curves-- my girlfriend is the owner and they are the business that sponsored Sam in football last year and they also had a box of leaves for TBI Awareness.

The other business is It's Time -- a fabulous clothing store in Neepawa. A friend owns it too and they have supported us with TBI leaf sales also and help spread the word via twitter and Facebook.

All the money raised from the bracelets will be given to Epilepsy and Seizure Association of Manitoba (Esam) The money will be used to help keep the Association spreading awareness, giving out pamphlets on E. education and anything else that is needed. Esam is the place we went to for our 'education' with epilepsy when Sam was first diagnosed and we were given a tremendous amount of help in understanding what we were going thru and what we may face.

Please show your support for Epilepsy survivors and families and wear purple on March 26!

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 

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

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!!!☺)

me? who.... whhhhaa?

Do you ever get that feeling like you should maybe take the kids to the doctor but you KNOW that as soon as you do they will be perfectly fine and you will be left looking like one of those mothers that has Munchausen by proxy!?  Some days (ok a lot of the time) I feel like this.... especially with Sam.
This morning as I was taking the kids to school he tells me that as they were going to visit my dad last night before air cadets, that when they walked in the PCH his vision went goofy on him. He had no peripheral vison (when the accident happened Samuel lost all peripheral vision in his left eye and we were told that he would have only about 50% of it when he was recovered--  but he not only gained it ALL back but his vision was improved to the point of not wearing his glasses anymore!). So his dad told him to sit down til it past. Not too sure how long this was for (they got home after 10pm and dennis was up late this morning and didnt get the chance to share the story yet). I asked if he hit his head at all or if anything happened at school that could account for this and sam said 'no'... My first reaction was a racing heart and stomach dropping and my mind raced that i should get him in to see the Dr. today... then I took a deep breath and told him that we need to remember to tell the Dr. of this at our next appt (in about 2 weeks). So I have made a note on Alice (my iPod) to be sure to let the doctor know about it (and i will interogate my husband tonight and get more of the story).
This upcoming Monday is our first visit to the TBI group support meeting in Brandon. To be honest I am nervous. I am scared that it will create an anxiety in Sam, or he will find things that others say there and use them to 'play us' (cuz lets be honest and not forget-- he is a teenager!☺) or that things that people will say may scare him and give him cause to worry. I have been praying for Sam and has really noticed changes in him. He is resting more, he is more open to talking to me about how things are going in his day and in his head (for the most part). I still havent spoken to the school yet (I have been away for 2 field trips inbetween having some lovely stomach bug... and Josh had the bug...)  So Monday morning I will call and speak to the Vice Principal and talk with her. Mostly just to check in that things are going as sam says they are for him at school.
I have been trying to get more awareness our there too about TBI. There is a serious lack of support and counselling for not only the survivor  but for the family too -- well in our area at least. (this group that we are going to with Sam is more for adults but we are taking him anyway since the last time we were there -- for my dad-- there was a young girl there with a TBI.)
Again I seem to be scattered with my brain and my thots ... will I ever be able to string together a logical post again? I sometimes kid Sam that I have a TBI too from being so close with him... ☺