My daddy

 

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

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

~Miley Cyrus "Butterfly fly away" lyrics~

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

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

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

sigh...

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

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

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

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

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

Frustration

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

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

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

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

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

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

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

I am the WIFE and I am the DAUGHTER!

I am the person that looks after them.

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

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

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

 I am the one that loves them TOTALLY UNCONDITIONALLY!

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

I will be their biggest advocate when they need one.

I will just be whatever they need WHENEVER they need.

I will just be....

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

He is a go...

our doc said he was not concerned with the stitches area and so Sam is a go for football.

Mom on the other hand is still a wreck about it... will I ever be okay with this football thing!? Sometimes I really wonder... sigh

So tonight is his first practice that he won't be red shirted (which means he can be tackled now)

BUT I told him if he so much as even sees stars...

If it really hurts or he gets a headache...

If there is ANYTHING out of the norm...

he is to get off the field and check in with a coach.

I am going to have so many gray hairs and Albert will be needing an overdose on the apple cider vinegar...

sigh... I know all will be fine and Sam is in God's hands. It will be well...

Patience is a virtue...

or so I am told-- but the hard part is getting a teen to learn and realize it!

Sam is so irritated by not getting to play football until we see the doctor that I made an appointment with our regular doctor for Monday to see if he is good to go yet. He is 'chompin' at the bit to get out there and it is driving me crazy--I know it isn't a far drive either!  We won't be seeing the neurologist until mid Oct. and he is not willing to wait that long.

We will be starting our annual trips to the TBI meetings soon too (one more thing added to our weekly roster of running). I think we will be only going to the Dauphin meetings this year unless we have a reason for the Brandon ones -- like being in Brandon on the day of it. It is just too much running and driving for me. I am so tired these days that I find my level of patience is wearing to onion skin thinness... ahhh the life of a mom! ☺

I am trying a few new 'tricks of the trade [motherhood]' with Sam and his memory for things and for his sleeping health. We are propping up his bed with cinder blocks to help him with the sleep issues (still nothing new on that front) and for keeping his room cleaner (dust, dirty laundry etc) I am going to give him an extra 15min. on the phone each night as an incentive. Yes we limit our kids time on the phone, and the computer, wii, etc. -- meanies I know but in a house with 4 kids.. you figure it out.  So hopefully one or BOTH new 'ideas' will work!  (cross your fingers!)

Letter to Sam

My dear Samuel...

 I sit here in the room that is just down the hall from where you first stayed in 2 years ago. The sounds are the same, the sights are the same, and even the smell is the same.  You can feel it too because the look on your face is the same as it was when we were here before. You have a blank faraway look in your eyes; you are extremely quiet and withdrawn. You don’t eat much, talk much, smile much or laugh at all. It hurts my heart to see you like this again.

 There is a difference though this time in that we KNOW that things will not be different when we go home! The hard work of the trip home is done, trying to explain to people what happened is not something we need to do this time. This time we go home and after a few days or rest (and a few weeks possibly of rest from actual contact on the football field) our life will return to our normal routine. Your hair will grow to cover the scar and it will be like we were never here.

Once again there have been a number of people – friends and family- that have been praying for you. Their prayers have reached God’s ear and you are doing so well medically and physically. I hope that with this journey we have taken you will always remember that God can and DOES perform miracles today! 

We sit and wait for the doctor to come in and tell us we can leave the hospital today! Only a day after your surgery! Hallelujah!  We will leave here and head to the Ronald McDonald House for the night so that we can have a good night sleep before we start out on our drive home. It will also be a bit of a buffer zone before we get 3 hours from the Children’s Hospital – something to make me feel better ☺.

I hope you also know Sam, that you are my hero. You are such an amazing kid. I don’t know of too many kids that would have handled this whole ‘adventure’ as well as you. I hope you never forget the amazing miracles you have experienced in these last few years and I pray that you will not be scared to share those stories with others as a testimony for God and how He is here with us!

One last thing, Sam is my verse that kept me going through all of this adventure with you:

 "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13

♥mom    oxo

My non elborate posting....

I know I have been negligent in my posts here as of late, but I have been trying but I have also been deleting... too much to say and then nothing to say. Things here at home have been so insanely busy the last -- ummm lets just say -- forever... that I know that things are starting to catch up to me both mentally and physically.

Sam got home from Cadet training all safe and sound. July 29th came and went. For most people it was just another day -- which it was but I personally found it extremely hard with Sam being so far away. I sat and cried over the day and thanked God for all that He blessed us with that Tuesday and the days, weeks, months and years to follow. But I had a sinking feeling in the pit of my stomach all day and until he (Sam) came home on the 31st

Since then I have been trying to arrange all the appointments that are needed before the surgery (cranial plasti -- a plate to placed where the bullet entered his head -- I have such a hard time with saying that B word. It makes me have to blink back tears.) and for appointments for myself and Joshua and Sam -- after the surgery, football, school, and the rest of life for everyone. I have found a place to live the week we are in if I can't get into the Ronald MacDonald House. It is safe and secure but it is not right close to the hospital-- but IT IS free and private (thank you God!)  I have also been trying to plan a holiday that we are going on next week with the kids. Dennis and I are taking the family to see the Rockies, the Tyrell Museum and other fun family stuff along the way. So I have been trying to plan stops, groceries, budget gas, food, etc. and still stay somewhat sane. Along with this I have been promoted to Manager of the Neepawa Tigers football team, I have been helping Dennis with whatever he is needing help with, getting kids to enjoy the summer, getting kids to and from work,... blah blah blah.

When I think about this up and coming surgery I just feel heavy and tired. I know he is in good hands with not only the doctors but God will be with us all as he goes back to the hospital-- but I am a mom AND that makes me human. I have not been worrying about it but sometimes I stop and have to catch my breath again over the whole thing. I wonder when the anxiety and tears will stop?

See there is nothing really going on that needs to be posted here, mostly just 'whining and whingeing' so I apologize...maybe once we are back from a break from reality for a few days I can get more elaborate thots down.... LOL who am I kidding!?  Me an elborate thots are not sympatico! ☺

Houston.... We have a date...

Sam has a date for his cranial plasti. September 7th. The day before school starts and the day after the long weekend. It is also the day before he was to see the ENT in Winnipeg...which means I have spent the day on the phone with nurses, hospital and patient coordinators, receptionists, and a whole pile of other people, trying to re-arrange appointments and make appointments for Sam.  I am exhausted and ready to cry from the sheer frustration of it all. AND I need to find a doctor that will do his pre-op physical, as our regular physician has now retired and the new one that is to take on the new patients is not here yet and wont be for a few weeks.... as I typed this I got a bright idea and called the doctor that was at the hospital when Sam was first brought into the emerg. and he rode with him to Winnipeg-- and he is going to do the pre-op for me!! YAY for using the old coconut! Now it is on to waiting for Winnipeg to return calls and help in making arrangements.

The other issue I am going to be dealing with is that we are in the city for a week at least (what Gail our TBI co-ordinator) said... so I need to find somewhere for me to 'live'. In August she will call the Ronald MacDonald House and see if we can get in but I have to have a back up incase they are full... sigh. So a hotel and $$$$ and meals and all the 'fun' stuff that goes with it.  Breathe Jodi, breathe...

For some reason I have been getting anxiety attacks again. The last few months and it is horrible! I don't want to go out (but I don't want to be at home...) and when talking with people I begin to panic and want to burst into tears... I feel incredibly stupid.

I just hope in the next few days, I can get things sorted out with  Sam's appointments and my head.

Speaking of Sam... He is in Penhold, Alberta for another week and then he is home! YAY! I miss him terribly. At the last time we spoke to him, he wasnt really enjoying himself -- too much book work and terrible food-- but we havent spoke to him since Sat. night so I hope that means that things got better for him!

On to more phone calls and arrangements...

normality!?

WOW! It is so hard to believe we are into summer already! The grass is green and in need of being mowed, the flowers weeds are blooming in my yard and we just dropped Sam off for cadet training yesterday morning -- 3am -- for 3 weeks in Penhold, Alberta. I miss him already!

Dennis and I were talking last night -- discussing our kids and I had noticed but not really how much of Sam's wit and humour had returned. (sometimes it takes someone to point something out so you can see it) There is no longer an awkward pause or a crooked (and somewhat sad) smile on his face anymore when a joke or sarcasm  is used. He usually gets it fairly quick and is just a fast in his smart assed retort. I know that for some people that is not what they would necessarily look for in thier kids but that is who Sam was and is coming back to. I can honestly say too that I miss it-- the humour and wit not the smart assed-ness☺. But things are starting to come together for him. The doctors did say that it could be 2 yrs or more before there is a semblance of normal.... and guess what... we are closing in on that 2 year mark. Sam will be in Penhold for that date but its all good.  Life is getting to normal -- or as close to normal as we can with all the teens and hormones in the house!

We finally got a response from the ENT in Winnipeg (for Sam's sleeping issues and nasal passages) and it is set for Sept 8, then I got a letter from the stomach doctor for me and I am having another stomach scope (I forget what it is called at the moment) on Sept 15-- in Winnipeg. So there will be a lot of time spent in Wpg in Sept it seems... ugh. Still no news on the neurosurgery for the plate for Sam... maybe soon.

This past week (10days actually) my aunt and 2 of her kids are out visiting from Newfoundland. Zach is in the reserves and was in cadets (and seems to know A LOT about military stuff), he and Sam seem to get along fairly well.  I am sure as with every other parent in the world, you wonder what your kids will be like and what they will do when they are grown and have left home. Which makes me wonder if after talking to Zach this week Sam is interested in the reserves or military-- hmmmmm, guess Iwill have to wait...just like everyone else☺

Long time no update!

I know, I know... I havent posted on here in forever. I apologize and my excuse is that life got so busy and out of control, there was no time for sitting here and doing just this! And not that there is nothing to update... sigh... sorry.

Well first to back track a bit, the presentation I did went good I think. I rambled a bit but tried to stay on topic (but when talking about TBI sometimes it seems like I , myself have one, as there is sooooooo much information and things to share!) I intend to sit down this summer and write out a presentation -- if for nothing else - for me to get things in order in my head.  There were not many parents at the meeting (maybe 6 in total) so it was easier to talk but when a few tears were starting to be seen I had a bit of trouble staying focused and not crying myself.

 In the month of June I made 1 trip to Winnipeg with Josh and Sam and one with Sam and Dennis. The first one was so that Sam could meet with Dr. MacD. and have a consult on a surgery for having a plate 'put in' to cover over the 'hole'-- we are really hoping that this will be done this summer. (and it is looking like it could very well BE done this summer!!) It was all Sam with this. He came to me one day this spring and asked if we could talk and then he told me why. He wants it done because kids at school (some of his best friends too) will stare at the scar and watch his heart beating, they want to touch the area still, just being curious teens but it really bothers him. I told him that it was a good enough reason, since HE was the one who has to live with this. Sam also likes to have his hair very short-- he ALWAYS has and now he keeps it longer (not good for cadets) and it irritates him. Dr.MacD said the same thing I told Sam and then Sam had a few days to think about the risks and whatnot but in the end did decide to go ahead with it. So we will have another trip into the city for a few days while he has this done. (AND our awesome TBI co-ordinator Gail, is going to be sending a letter to the Ron. McDon. House to try to get us in there again since it is going to be a serious surgery-- I love her! She knows the financial drain that TBI's can cost a family and a week in a hotel would put almost anyone in the por house!☺)

The next day in Winnipeg (cuz this was a 2 day trip) was for Josh to get his tailbone fixed. He had to go in for a day procedure and they manipulated it back into place--but it didn't "CLICK" back, so it is a bit of a floppy joint. Joshua's job until the end of July is to keep an eye on the pain and discomfort. If it doesn't get any better OR gets worse when we go back in to see Dr.J., he will be refered to spinal surgeon to have the bone removed.

The following week, I was back in the city with Sam (and Dennis) to see Dr. G. We filled him in on what was happening with Dr. MacD, with things at home (sleep, school, headaches etc). We are still having issues with Sam's sleeping. He has periods doesn't sleep well at night -- waking up a lot, not being able to sleep. We have gone to a sleep clinic but the results from it were that all was normal... LOL ... normal. There is quite a tory behind THAT fiasco of a visit -- but to keep it short, it was not a 'normal' sleep night or a 'routine' set up for the sleep lab. So our dr. has been trying since then (that was in Dec. '08) to get him back in for another appointment but they wont answer his letters OR his phone calls! Sooooooooo... Dr. G. is going to first send Sam to an ENT to check out his sinus passages (I apparently have extremely narrow passages -- so maybe he has inherited it from me) and see if there is anything there that is causing him trouble. From that appt. they can ither A.) fix the sinuses (and possibly result in sam sleeping better) or B.) get him into the sleep lab faster (apparently this dr. can work miracles with the sleep clinic!) Either way, we are hoping for a bit of news on the sleep front! If Sam can get better sleep at night that is 1/2 the battle with him. Fatigue is not so much an issue, he can deal with things better (who doesn't), he will be able to function in most areas better if he is sleeping!!

This might all be sorted out this summer to as Dr. G. wants it done before Sam sees Dr. MacD. for the surgery, BUT Sam is gone for most of July to Air Cadet Training in Penhold, Alberta. He leaves July 9 and isn't back until the 23... so there might be another extremely busy month for us.

Both Josh and Sam were on the football team for the spring league and I actually got a great picture of the 2 of them in their uniforms at the last game! And this is the picture of Josh on Saturday, June 19th. My baby turned 16 and he got his first truck(a gift from my mom). It needs a lot of work but he loved it! It is a Ford F68--not too sure on the year but it is a beaut! Can't wait for him to get it running!

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!

learning curve...

okay I have been working on getting this blog to be more us and not just some generic run of the mill blog. Somethings that screams ginter!... okay maybe not screams but more like who we are.

And I am getting nowhere! I made a slide file so I could put in the side column but I cant make it work! I made a header for the blog with my own graphics in PSElements and I cant make it work. I thought I had someone to help me with this but apparently he has bailed on me... so I am on my own-- grrrrrrrr. So please bare with me as I am learning this whole wordpress thing. OR if someone else is out there reading and knows how to help me-- I am always open to learning via some help! I think I might like to eventually spend some money on this and buy my own domain(not sure if that is the right words...) but not right now.

Sam has had a few very late nights this week (TBI mtg on wed, cadets on Thurs and tonight will be youth group) and it is all starting to show. tomorrow the cadets are supposed to have a sports day but we will have to see if he is able to handle it. I can see a fatigue break down on our horizon if we dont get him resting.

Sometime this morning I am supposed to get a phone call from one of the local papers for an interview about Sam. They want to put some stuff about the TBI conference and use Sam as a story to go with it. (that is what I gathered from talking with Darren at the paper) Yesterday Darren picked up Sam from school at noon and took him out to have some photos done for the article-- I can't wait to see them! I will post the story when it is done for all to read!

ahhhhh.....**sigh**

Hear that!? yep... quiet, peace and quiet -- well almost. After almost 2 weeks of having kids at my side (sickness the week before March Break and then the actual March Break) my house is finally my own domain again!  Well, almost... Dennis is home and will be from now on. He has applied for a leave of absence at the CFIA (Canadian Food Inspection Agency) and will be working for my mom on the farm here (here being our house) on the cow calf operation. He doesn't officially start until after the 9th of April, but  he had some time off coming to him for work so he took it.  We will be spending time this week doing yard work, getting sheep ready for spring and hopefully a few finishing touches with the house renos.

Dennis being home now more will mean a new learning curve for us all again. He will be here in the morning with the kids as they get ready for school, he will be home (or at least near by) when they get home from school. He has already informed me that if it can be worked out he will drive the kids to the bus in the mornings for me(sigh... this is why I ♥ him!)  The kids are all fairly excited about this.

This also means that maybe my mornings with sam will not be as ARRRGGGGGGGGHHHHHH as there will be 2 of us to work with him! The last 2 weeks have been so draining for me. (when I think how tired both physically and emotionally for me I can't imagine how they are for Sam) He has been fairly sick with first the flu for 4.5 days and then it turned to a cold into his chest. So he was clingy, a bit whiney and just over all in a bit of a regressed state. Even tho we work hard to keep the kids in a routine over the holidays, it is still not our usual routine and it seems to stress him out after a few days. So I am very happy that today is back to school!!!!

This will be the first week for Sam to go ALL 5 days this week too. He will go Mon-Fri and then next week he will take the Wed. off in hopes of getting him back into full-time school. We are supposed to try it (crossing our fingers here) and if it is needed for a day off we will just take it-- but it will have to be a good reason to take a day before next Wed. Sam's inspiration for 5 day school week is football season. He has to be back to full-time before the spring league starts so he can play. (our rules not the school). He has been working out to work toward this and as soon as the weather co-operates he and Josh will be out running with Dennis in the mornings or after school to start training.

I have been busy trying to get the TBI conference 'out there' in the public but it seems that (I hate to say this) if it isn't cancer related people just aren't interested! No matter the information and statistics that you give people they just don't care. I had given my info for the conference to our local papers but neither of them have run the PSA's that I have seen!  I will be contacting them today to see what they are planning to do with them-- as there may be people wanting to REGISTER for this conference and need to know about it BEFORE it is over!  I am getting to a point where it feels like I need to be more aggressive about this, but I worry that if I get to 'forward' I will get emotional about it all and then look like an idiot as I try to advocate for something while crying my heart out...

One day at a time...

wasnt that a TV show!? (LOL for those you who really know me... I love 70's and 80's sitcoms)☺

but that is our motto in this house!

As I sit here typing this out, our Sammi is upstairs sleeping in our bed (we have a tv in our room) with a fever, sick stomach and vertigo. It is his normal day for staying home but today he is sick. I have had him up and in a cool shower, gave him Tylenol and sent him back to bed. He white as a sheet and looks horrible. I always get worried when he has a fever since we have to be sure the fever doesn't go to high and trigger seizures. (never have had one yet but the doctors still tell us to be very careful with them).

Last week on Tuesday he came home from school fatigued. White, slightly limping and his left side ever so slightly drooping. It took until Monday for him to 'get back to normal'. Then he came home last night feeling sick and just blah. So i wonder if it wasnt starting last week and finally hitting him now... who knows.

Sam and I had a great talk last week and he has decided to have the plastic surgery done on his head. This will be a metal plate put in to cover  the 'hole' where the bullet entered. I was shocked when he told he that this was what he wanted to do AND that  he had been thinking about it for quite a while now. He says he is bothered by the way people will watch his head and not look him in the eye when they talk to him (usually this means his friends). Around the entry wound area is not only a long scar but the 'hole' and a person can see his heart beating there and it will pulse or bulge when he is stressed or there is pressure from straining. We had told Sam (from the beginning) that this would be a decision up to him alone. It is him that would have to live with the scar, the 'hole' and whatever else is involved, and we have never brought it up again.  And his reasons for wanting to do it make sense to me. He is a teen and wants to not be different. But there is more to it... kids are also asking to touch it. This is one thing that distresses me! Sam has said that he didn't mind at first but now it is getting to be too much.  So we have talked about it, and I have called our TBI co-ordinator (Gail) and am waiting for her to call me back to see how we go about getting a consult and with who.

Sam lately has been having episodes of vertigo. He will get dizzy when sitting then standing (which is normal for a lot of people) but he will also get dizzy when walking, standing AND while sitting! So I hope to ask Gail about this too. I know it is normal for a lot of survivors but it doesn't hurt to just double-check. We have told Sam that he needs to be aware of when it happens and what happens b4 he feels the full effect of it so he can know while riding a bike or climbing up a ladder, etc. to get himself in a safe position.

He is still having stomach issues to the last while. Meaning his stomach will physically hurt, then he tends to lose his appetite. I havent found much info on this so it will be another question for Gail.

Once again our lives are taking a turn and things will be very different around our house, but for now I will leave it for a future date to talk about! BUT we did sell our house and as of tomorrow (Mar 25) it will no longer be our house! YAY!!! Thank you Lord!

My blog will be under construction the next little while as I get used to the new formats and get the right background and widgets on here. I need to transfer over the info from the old blog once all that is in place! If there are any ideas for here please let me know!

Moving Day

Yes... we have moved!

http://www.visibleangels.wordpress.com/

see you there!!!

Boy oh Boy! When you go to bed at 11 and are up at 5 the night just doesn't seem long enough!! Dennis and I took Sam to the Brandon meeting last night and had a good talk on the way home with him. He really enjoys going and learning that he isnt alone in this-- that there are others out there that 'get him'! There was a discussion about the P.A.R.T.Y. (Prevention for Alcohol Risk-Related Trauma in Youth) (please click on link to see the idea behind this AWESOME program!!!!) and that it is going to be in Brandon and one of the caregivers thought that it would be awesome for Sam to be one of the survivors to speak to the teens of what it is like to survive AND live with a TBI since he is closer  to their age.  We had talked to him about it but at this time it is too early for him to talk about it. He needs to learn to live with it himself before he shares his story to strangers. But I asked him to think about it for something to maybe do in the future.

We only have 2 Wednesdays left of Sam being at home!! YAY we are both excited about this!! Sam is really tired of being at home (or maybe just tired of me or not seeing his girlfriend... lol who knows-- but I am willing to put money on both!☺) I have spent more time with him than probably all the other kids...so it is coming to be a time to start making more them. I have always tried to spend time with each of them each week just one on one, but lately with Sam and the moving to the new place and Dennis being in town with who ever had a sport or activity (which had me here doing battle with homework, the house and chores) I was tired both physically and emotionally. I have to be honest here and say that there have been times where I would tell a child I was too tired to play a board game, read a book or even just talk. (man what a way to win bad mommy of the year!)  But now it is time to get back on track and get back to basics with all the kids individually and as a family, for some fun stuff!

On a quick side note of Praise... after I posted on the blog yesterday (about an hour and a half later) I got 3 (yes that is THREE) emails from teachers! When I sent this email out this week, I asked for school work and I commented how we were grateful for their help with Sam and that we really notice a difference in him and his work when we are able to keep him organized! So whether the 'thanks' was it or whatever, I was so happy to see them hit my inbox!