pray... write... delete... post... pray... repeat...

Last Monday was my 14th care meeting at the personal care home where my daddy lives.  FOURTEENTH ... my daddy has lived in a care home for 14 years. Out of the 22years since his accident, 14 of them have been with us -- meaning he has lived here in Manitoba. Every year I go to the care home and go to this care meeting we discuss daddy's health - both physical and mental, we talk about things we will work on with him the up coming year ... and every year I have to agree to his health care directive. All the personal and gory details of caring for him.

Decisions get made every year that were made the year before - but that doesn't make it any easier. Every year I make those hard decisions alone. 

Every. Single. Year.

This year I got to add to the care plan that I have planned and made arrangements for Daddy's funeral for when the time comes. I spoke with the public trustee and explained to her how when dad gets really sick (and theres been quite a few times in the past 14 years) that I have to do a quick exit plan for him and its getting harder to do each time. So we (me, the funeral home and the public trustee) prearranged it all.  

whoo...

hoo...

done and done... 

I wonder where other  single children caregivers go to discuss any plans or arrangements, reminisce about the past or just to talk about how they are doing while going through whatever they are going through? I have no family to rely on. No one but me to have happy memories of my dad with, no one but me to go and visit him and discuss his care with... no one else to visit him period. So it is all down to me and I am willing to admit that I am failing in the daughter of the year arena. {I don't get the chance to see him nearly as much as I should. He is hard to visit with - he doesn't talk and when he does it is a lot of swearing and extremely inappropriate things being said. I usually leave with tears in my eyes and my heart breaking.} it gets very exhausting hearing people (who work in the home AND who all seem to think they 'get it' that its ok, at least I am seeing him when I can. "its quality right..not quantity"... but its not either to be honest).

I have Dennis and he is a huge help for some areas, but even he knows how hard it is because he never knew my dad. He met him maybe 6-8 times before the accident and that was it. He has no "hey remember that time me, you and your dad..." really to share. (ok we have one and it involves my dad in a field near a rock pile and a badger... marking said field while they were spraying). The next memory we share is when daddy showed up for Christmas after Sammi was born... then I never saw him again, until he was in ICU and hooked up to every imaginable machine possible.

I know wishing doesn't do any good, this is not something that is every going to get better... or easier. But I really do WONDER ... how do others do it!? where do they go? how to they cope?

At my BI meeting group no one else there is remotely in the same boat as me when it comes to this Brain Injury game... no one. 

honestly I had seriously hoped and prayed that this blog would have had at least ONE person cross my path that may have been of support.  so I will continue as I have started and I will pray, write...delete...write...delete .... possibly post it... pray some more....

...and repeat...

saying goodbye & forgiveness -- all in one day

On December 31, 2016, before midnight, my uncle Norman had a dance with his beautiful wife(my daddy's youngest sister), Lois, at their local legion,  after they decided to call it an early night and head home.  A short while later in the parking lot of the legion, Uncle Norman, started their car, pulled out of their parking space. He then proceeded to re-park the car, turn off the ignition and have a massive heart attack and pass away.
To say the least his entire family (my aunt Lois, their 4 kids and all their grandkids) and the rest of the family were devastated. Dennis and I headed to Alberta to be with my aunt and cousins during this time. My uncle was awesome! He taught... OK he TRIED to teach me... how to peel potatoes KP style (he was in the British Army back in the day) when he was home in Ireland. He taught me how to make amazing Chicken Fettuccine Alfredo, he taught me other kitchen tricks. He had a laugh that was infectious.
I personally felt very guilty about going to his funeral, as I had hoped to go last fall to see them but we went to see my mom instead, so the plan was to go out this spring. I didn't want my last visit with my favourite uncle to be at his funeral, but God had other plans. I am so happy though to know I will see him again and then it will be for eternity!

While at the celebration of his life, my aunt asked me to have a drink with her and N, (N was my daddy's second wife and she and her boyfriend played parts in where my daddy is now in life) and to put the past behind us. It was a very hard decision for me to make... so incredibly hard that I almost didn't want to go to Alberta, because I knew she would be there. But I went, I went and I spoke to her. I told her that I had forgiven her long ago, but that it didn't do a thing for my heart to know that my kids would never know just how awesome of a man my daddy was. I told her how whatever her part, and her boyfriends part... and my dad's part, was in it all I can not convey to my kids how much he would have loved them, how proud he would be of them all and how much he would have been THE BEST PAPA EVER to them! I told her how each of our kids remind me of my daddy and how that breaks my heart (and makes it soar) every time I see it in them. I told her how our Sammi looks SO much and acts SO MUCH like my dad it is scary! I told her that I forgave her because I did it for ME.... not for her, not for daddy, not for anyone but ME. I had to because it was killing me. I told her how I had told dad that if he truly felt he belonged with her that I would support him and love him no matter what. She told me how she thinks of him everyday and she loves him (even though she is now married again) but I told her that I not only think of my dad everyday, I MISS him everyday because my daddy is gone. He effectively died that day and all that is left now is a shell.
I don't ever expect to see her again (but I may if I go to visit my aunt), but I am glad to got to say my peace with her. I am glad she knows that I forgive her but that the choices that were made that day affected not only her, her boyfriend and my dad but they affected me, Dennis, our kids and the future generations of my family that will never know him. Never hear HIS laugh, hear him tell a joke (but insist you clean it up before you pass it on lol), here him tell them how much he loves them and how proud he is of them. I often say to Dennis "I wonder if dad would have....
- had a cell phone and learned to text to communicate with the kids
- had a FB profile
- rode with Josh in his Mack hay hauler
- sat and enjoyed a beer with Sammi on a Saturday afternoon
- talked religion vs. faith with Isaac
- bought our Hannah a bouquet of flowers and had them delivered to the school for her birthday
- would have been proud of me and how I have raised my family

all these things I wonder but I will never know because he was taken from me, from us. But I am so glad I got to tell her. I still want to hate her but I can't. I can't because they not only took my dad from me, they took my awesome kids from their lives too...and sometimes I think that is punishment enough.
With this being said, I still cry about talking to her. My anxiety was so bad that day that it was crushing me. There is more I could have said, maybe should have said, but I hugged her and that was it. I left the area where we were talking and headed to the bar of the legion where the celebration of life was and enjoyed the rest of the evening reminiscing with my cousins and sharing their grief. I buried mine that night.... again and maybe one day I can have someone to share my grief with.....




maybe

Where does the time go!?

It is so hard to believe that yet another summer has almost come and gone.  NOt only has the summer been flying by but so has life  and by life I mean kids growing up! Joshua graduated this June -- sigh. (I am feeling so old some days!) AND he has moved out. ok, he moved into our old house across the road but still, he is not living in our home anymore (although we DO see him more now than when he lived with us -- go figure...) 

Josh receiving his diploma!❤

Proud papa and mama! 

Our graduate and his beautiful girlfriend Dana! {we heart her}

Official "grad pic" He looks like one of The Duckmen! :)

Another Brain Injury Awareness campaign is also {almost} done too..... Well what I mean is I am not mailing out piles of envelopes every week now, but I do still get a trickle of emails with requests for them. I have about 100 left and hope to continue sending the bracelets out until they are all gone! 

This year I had one goal for myself with regards to the bracelets and that was to send some to a country I had not sent to last year! Then one morning in July I received an email with a request for some, so I replied back to please send me their mailing address and low and behold it was somewhere I hadn’t sent any bracelets! MOSCOW, RUSSIA!!!  I was so excited and that prompted me to map out everywhere I had sent bracelets in total! I discovered that I had sent bracelets to 5 provinces in Canada, 42 states in the USA and 6 countries in total!!

 I was shocked!  I still AM shocked! 

That was almost 1500 bracelets out in the world! 

So now I need to work on a goal for next year -- maybe it should be to deliver some bracelets in person ... {grin}

The summer has gone by so quick and we have been so busy with the farm and the kids that it is hard to remember all that has happened.

One big surprise for Dennis and I was in July when we went to Dauphin Bible Camp (where Isaac was working as a work hand) to see one of the teens from our church be baptized). After church that Sunday, there was a baptism planned for 4 people and there ended up being 13 in total when it was over and one of those 13 was our boy Isaac! He felt lead to be baptized as he was walking up to the pool and in his testimony he told how he was wanting to be baptized by our minister Pastor Dean (who moved to Alberta a few years ago). He told how while he was walking up he felt that God spoke to him telling him that it didn’t matter WHO did the baptizing, it was WHO he was being baptized thru in the NAME OF.

We were {and still are} so proud of him! 

Isaac giving his testimony ... ❤

Declaring he has accepted Jesus

Hold yer breath! :D

Born again!! ❤❤ so proud of him! 

It was a big step and we noticed a huge difference in him when he came home that day and while he was at home for the week and a half before heading back to camp for Cabin Leader Training (CLT).  All he could talk about was what he had learned, read and saw, other kids that were there and what they had/have learned! He read the book of Revelation (not my first choice of books in the Bible to read but it is so Isaac! :) ) He was talking about next year and working at camp for the summer already too! He was so excited about working with kids and going back.

We pick up the boys next week from camp and this weekend Hannah heads up for teen camp. Then next week everyone is home and we are getting back into regular life routine and getting ready for ... Ugh... Winter 

This fall school season will see Sam in grade 12 (not sure if he is going to do an entire year as he CAN be done after the first semester), Isaac in grade 11 and Hannah in grade 9. SInce Joshua has now graduated  and is well and settled in our ‘old  house’ across the road AND working full time but also plans on going to get his Class 1 Drivers License for trucking. 

Dennis and I are busy with the farm and life and I just signed myself up for some night courses in photography at the local college. So this winter I will have something to keep me busy now that I am not running back and forth to Winnipeg with appointments. 

As of July Sam is2 years seizure free and this  August he will be one year without medication and back to his ‘normal’ self. I say ‘normal’ as we still have issues with BI moments and then there are those darn hormones that like to throw in monkey wrenches where we don’t expect OR want them! Lol But then if life were too normal, who would want it!?

new hope

So Sam has been at the CATC (Children and Adolscent Treaattment Centre) for 5 days and was able to come home last night, for the weekend but he has to go back on Sunday evening. He has met with all the doctors and psychiatrists and counsellors. His days are busy, spent with one or more of the professionals, doing school in the afternoon, working on booklets to help deal with things and general socializing. He says he is getting a lot out of it, and i guess this weekend is a trial run.
If we have any issues or problems we can call the CATC and take him in -- I doubt that will be necessary. He seems much more relaxed and more of the Sam we had before his accident almost 4 years ago. But then while he is at the centre the stress of home and school and family is not there with him.
Dennis and I spoke with the other kids this week too while Sam was not here and we explained to them that we will all be going for counselling and that they need to be open and honest about their feelings toward us, Sam, each other, this situation. We had a good talk with them on Thursday night and I hope we were able to convey the importance of this... time will tell I guess.

Something we did talk about (that we never had before) was who felt that since Sam's accident they were missing out on things -- when it was all explained and pointed out about we were talking about they realized that no one had been missing out on things really. No more than anyone else in any household that runs on a budget... the kids all still got football, cadets, gymnastics, movie money, lunch money, meals out, new clothes, new music, ipods, etc. There has been a lot of 'poor me' going on with us all... and we just reminded the kids of all of these 'blessings' and how we need to focus on what we have and not what we dont. We also pointed out that Sam has to do this also -- he needs to focus on what he CAN do and not what we can't. We tried to get them to see a bit of the last year thru Sam's eyes and how the loss of his getting his license, not being able to go to friends houses, play hours of video games, being tired all the time, feeling drugged out, having trouble walking and talking and having to spend almost everyday with Dennis or I  -- is most definitely not a walk in the park. Basically, Sam gets 'special treatment' but it is not a treatment that any of them would want because it means that they lose out on everything else. It was amazing to see them start to realize what Sam's days are like and how if they had to spend as much time with us as Sam does ... that it would suck.
Even Isaac had a change of attitude once we spelled out how Sam spends his days at home and how his days are now at the CATC.

We got a phone call from the CATC on Thursday telling us that Sam's val proic med levels were high (they should be between 50-100) and he was up at 123.5 -- so they reduced one VP a night and the next day they tested and he was still 115. Dr. M (from the CATC) couldnt get a hold of Dr.A (epileptologist) as he was away for a few days and so we arent too sure what the plans are for things yet. Hoping Dr.A will say to reduce more VP -- crossing fingers that then Sam will be less tired and feeling sluggish, irritable, etc. (maybe we can get him off them altogether!!! .... wishful thinking .... )

For now our family is playing a waiting game on doctors and the centre and we are taking everything one day at a time...

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....

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