still a work in progress (as always)

this week (well more the last few weeks) have been ones of working towards my own healing.

December will be upon us tomorrow and I am still after 22years a mess this time of year. Crying at stupid Christmas songs, weepy when I think of setting up the tree, basically non-energetic about anything Christmas-y.

BUT...

I have started a new wellness regime that will hopefully be something that will get my hormones straight, get my ass moving more and most of all work out the issues in my head.

My bi-polar has been the worse it ever has been in the past 18-24 months. Yes, bi-polar... what an ugly word, makes me think of all sorts of negativity (but then again is there much positive about it??) I have discovered that now that I am in (yet another) new phase of my life... empty nesting... that our life with kids was a huge buffer for me. When those lovely voices started speaking in my head, I could keep them at bay and silenced with the noise of babies, kids and teenagers. Now that they are gone from the home, I find that I have them not even having to yell these days - their whispering is loud and clear ... and scary.
I am not writing this to freak anyone out but to clear my thoughts and put them down and sort them out!

I wrote the above a few weeks ago and walked away... now I am back to try this again... please bear with me...

I have enlisted some very dear sisters to pray for me and these new supplements and so far have noticed some small changes. I am sleeping better, I am not so weepy all the time, I find I am able to focus a bit better on the positive things. So almost a month in and I am going to remain on it for a while more.

Yesterday was a hard day though. We had a care meeting at the PCH for my dad. There are some new changed to final care in our health region and we (more like I) had ate look at it and make changes to his directives. Daddy has always been on DNR  -- right from the beginning, and it has remained so for 24years , but there was a small change that was made yesterday. Not necessarily the best time for me to make this decision with it being a hard time of year as it is....
Also I had met with some of the staff and daddy's doctor about changing his food from puree to mince. So he can be engaged with his eating and possibly less aspiration.  Yesterday we tried to find a happy medium with the speech pathologist, the dietician, the doctor and a few others on the care team.
It was a hard meeting for me in a few ways, first, I had to explain my reasons (which makes sense) for wanting them to make these changes and secondly I had to do it without having a stupid melt down... which I failed at... miserably. I felt like an idiot... I felt a full on, true failure at looking after my dad. I felt like I had dropped balls on so many things and most of them weren’t even ones I knew I was supposed to juggle, that issues that I assumed was being cared for were not and how dare I not know it.
I felt like some of the team was looking at me like I was heartless because I was asking for them to look at his quality of life and not just as a body in a chair that had to eat to stay alive - this is not something I say lightly because in 24 years I have had many, many things said to me out how and why I care for my dad. I have actually had people tell me that I was selfish, heartless or ignorant to have him on DNR, to sometimes wish he had have let go,after the beating so that he would have left and not had to,suffer as he does daily... and so that my memories of him could have been of who he was before my world crashed in on me and have the memories I now have...

I tried to explain that I know daddy would rather be eating food that even slightly resembles food not mush. But the one care worker, kept coming back to how he could choke and aspirate and it would be so traumatic for dad -- which I get but I want his days to be ones that if he is able to comprehend things that he knows he is being treated and respected as the awesome man he was, only I knew as we all sat around that table.
I am so thankful that Dennis was with me because he was able to ask what I was not able too because I was so damn emotional. He asked if there was anything.... ANYTHING ... we can do that can give him a better quality of eating?  I think it was then that the one realized that I was not asking for full time meal changes... just something to give him something to look forward too. It was decided that the home will give him his lunch as mince and his other meals as puree, so that he will always have the chance to eat a full supper if he gets too tired to chew the mince (until he can try to build up the muscles in his jaw)
But it kept being explained how it will look if he starts to choke and what that could entail long term... I wanted to honestly just say YES! I get it!! But lets stop always focusing on "what could' happen and look at what dad may possibly gain from this change!
I was very thankful as well with the social worker who was working hard advocating for daddy and his doctor - who kept saying that he totally gets us looking at his total life quality.
I refrained for saying a lot of negative things (yay me), but it is also so hard with on my mental health to not be able to say what I need to say.

Which brings me back to my circle of sisters that are praying for me. I have tried so hard to be honest and open about my feelings with people but there are just somethings that I still struggle to answer and to ask for prayer for without a full explanation (and possible meltdown)... I am still a work in progress and I am seriously trying to fully rely on God and His promises of mercy, grace and love. I do know that without my prayer sisters and my church family (even though most of them know NOTHING about any of this!)I can't even imagine where I would be. God is good, all the time...

A question that Dennis asked me yesterday was one that I thought I had the answer to, but realize it don't: what is God waiting me to learn from caring for my daddy and going through all that we have gone through and are continually seeming to go through. So if anyone could give me a heads up on this answer (is it possible for God to give someone an answer to someone else question or lesson?)

this is where the healing begins...

for the last 22 years I have dreaded the coming week.

it is the week before my daddy's accident...

then in 2008 at the beginning of this week was Sammi's accident and then the real dread kicks in.

the guilt...

the shame...

 the anxiety...

when they say that a brain injury affects the entire family it is so true.

My dad being beaten up affected him, me, my aunts and uncle, my grandad, my kids...
Sam's accident affected Sammi, me, Dennis, Joshua, Isaac and Hannah, Dennis' parents...

While both were totally different types and outcomes for brain injuries, they both affected me so strongly and I can't think of too many days that have gone by where I haven't thought of either of them and what could have been.

As the last week of July comes around, the what ifs and the if only's are so loud in my head, and this year is no different than the last 22 and 10...

What if when Dad and I had spoken differently that last Saturday morning?
What if I had told him more to follow his heart and be honest to himself and to me?
What if when I got to the hospital I had said my goodbyes and let him go sooner?
What if I had fought harder and had him come to Manitoba so I could have gotten him different care?

Maybe he would have had a different outcome if I had have done this instead of that.
Maybe he would at least speak if I had fought harder for different medical help.
Maybe he would remember me if I had be there more when it had happened.
Maybe if we hadn't argued that last Saturday, he would remember me.

With Sam's accident it is:

What if I had told them to come home instead of another week at the farm?
What if I had fought harder with the medical system to get him the proper help when it came to his mental health?

Then these thoughts start:
If I had had them come home when they were supposed to:
- Joshua wouldn't have dealt with (and I think still does) the guilt of suggesting going target practicing that day.
- Isaac wouldn't have had so much anger towards me about the time I had to spend taking Samuel to appointments.
- Hannah wouldn't be so worried about everyone and trying to be the momma.
- Samuel wouldn't have gotten into marijuana for pain and I am sure escape.
-  Samuel would have graduated with his friends, he would have been able to have a normal teenage life, he wouldn't have had the year of seizure drugs that messed with his head and his body.
- Isaac wouldn't have dealt with a lot of Sam's aggression.
- Each of our kids wouldn't have felt like I was abandoning each of them.
-  Josh and Samuel would still be best friends.
- The kids wouldn't have all felt the need to look after and worry about Samuel
- Sam wouldn't feel like we treat him like a child.
- Our Sam wouldn't feel like we are trying to control him when we are just wanting to help.

I have never told anyone until the other day (when I asked for prayer from a few friends at church for this) what I deal with each year at this time - but to be honest I didn't go into great detail with them either yet -- sometimes I am too scared to share my thoughts with other incase they think I am crazy... lol .. go figure why eh?!)

Tomorrow is the 10th anniversary of Sammi's "2nd birthday". I have had these weird things going on in my chest the last 4 days -- feels like a baby kicking in the middle of my chest. I cry at stupid things - songs, commercials, tv shows... nightmares... erratic eating... headaches...


So, this is where the healing to begins...

This is where fear and I are parting ways and as Francesca Battistelli sings the "Break Up Song":

Then a  friend sent me this verse yesterday and I had just read the verse this week {and Hannah always says, "If God feels you twice you had better listen!" and I agree}:

Ephesians 3:14-19 The Message (MSG)

14-19 My response is to get down on my knees before the Father, this magnificent Father who parcels out all heaven and earth. I ask him to strengthen you by his Spirit—not a brute strength but a glorious inner strength—that Christ will live in you as you open the door and invite him in. And I ask him that with both feet planted firmly on love, you’ll be able to take in with all followers of Jesus the extravagant dimensions of Christ’s love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God.

And then I saw this on Twitter:

So I am listening God...

Starting now, I will look to all the blessings that we have encountered because of this journey; the friendships, the education, all the strangers to help, knowledge that I had that prepared me to help Sam when I could, to help Dennis when I could, to recognize the injuries and have understand and knowledge of them as each of our three other kids had concussions and we dealt with them.
There is so much for me to focus on and I pray that God will help to gently remind me to do just that... focus on Him, keep my eyes upward not backward.
I pray He will give me strength to hand it all to Him, if and when I stumble, I pray that it would be a sooner rather than later recognition of self piloting in these well chartered waters of trying to do it alone.

I will cling to Jesus and His promise to never leave me or forsake me. I will lean in His arms and fully rely on Him and I don't want to forget that He is God and nothing surprises Him... nothing.


God is good, all the time...

couldn’t have said it better myself...

This this was a post from earlier in the year that I never posted and as the end of the month draws near, I think I can post it ... 

.

Music was a big part of me when I tried to express my emotions when growing up.
It still is the easiest way for me to deal with things.
Lyrics always seem to be able to say it... say anything... say everything... better than I can.
I crank up a song that really speaks to my heart and sing along to it with all my heart and tears pouring down my cheeks...


I try my best to be honest when posting here - its not always easy.
I'm not meaning I lie if I'm not being honest....
I mean, I try to post the most realistic views of what is happening in our corner and in my heart and head.



I try to be respectful of family members and friends, so I don't  post about things.
I try to not hurt peoples feelings or give them a reason to be mad at me (I am a people pleaser...)

everything I post is 100% true...
I just don't post everything that happens or goes through my brain or how I truly feel - I know this sounds strange when you read some of the things I post...

and in doing so I am not always 100% honest about how I am feeling or why I am feeling that way... but some things I can’t put into words or I am scared to give voice to some things...

so like Carrie Underwood says;

You can pretty lie

And say it’s okay

You can pretty smile

And just walk away

Pretty much fake your way through anything

But you can’t cry pretty

one day I will possibly be strong enough and brave enough to post exactly how I am feeling and why...

but until then...

music will speak for me when I struggle for the right words 

I choose...

I read this Max Lucado long ago script and had to share it today with FB and trying to share it on Twitter and on here because it rang so harmoniously in my heart today. I have been working on trying to be more of who God wants me to be and less of who society thinks I should be. I want to be someone who thinks of others, sees needs when and where it’s needed, who has peace in all situations, who forgives and KNOW I am forgiven... so much. It is not Brain Injury related but it is ME related... so read, choose and enjoy! 💗

*********************************************************
EACH DAY 

by Max Lucado 

It's quiet. It's early. My coffee is hot. The sky is still black. The world is still asleep. The day is coming. 

In a few moments, the day will arrive. It will roar down the track with the rising of the sun. 

The stillness of the dawn will be exchanged for the noise of the day. The calm of solitude will be replaced by the pounding of the human race. The refuge of the early morning will be invaded by decisions to be made and deadlines to be met. For the next twelve hours I will be exposed to the day's demands. It is now I must make a choice. Because of Calvary, I'm free to choose. And so I choose…. 

I CHOOSE LOVE… 

No occasion justifies hatred; no injustice warrants bitterness. I choose love. Today I will love God and what God loves. 

I CHOOSE JOY… 

I will invite my God to be the God of circumstance. I will refuse the temptation to be cynical…the tool of the lazy thinker. I will refuse to see people as anything less than human beings, created by God. I will refuse to see any problem as anything less than an opportunity to see God. 

I CHOOSE PEACE… 

I will live forgiven. I will forgive so that I may live. 

I CHOOSE PATIENCE… 

I will overlook the inconveniences of the world. Instead of cursing the one who takes my place, I'll invite him to do so. Rather than complain that the wait is too long, I will thank God for a moment to pray. Instead of clenching my fist at new assignments, I will face them with joy and courage. 

I CHOOSE KINDNESS… 

I will be kind to the poor, for they are alone. I will be kind to the rich, for they are afraid. And kind to the unkind, for such is how God has treated me. 

I CHOOSE GOODNESS… 

I will go without a dollar before I take a dishonest one. I will be overlooked before I will boast. I will confess before I will accuse. I choose goodness. 

I CHOOSE FAITHFULNESS… 

Today I will keep my promises. 

My debtors will not regret their trust. My associates will not question my word. My spouse will not question my love. 

I CHOOSE GENTLENESS… 

Nothing is won by force. I choose to be gentle. If I raise my voice, may it be only in praise. If I clench my fist, may it only be in prayer. If I make a demand, may it only be of myself. 

I CHOOSE SELF CONTROL… 

I am a spiritual being… After this body is dead, my spirit will soar. I refuse to let what will rot rule the eternal. I choose self-control. I will be drunk only by joy. I will be impassioned only by my faith. I will be influenced only by God. I will be taught only by Christ. I choose self-control. 

Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. To these I commit my day. If I succeed, I will give thanks. If I fail, I will seek His grace. And then, when this day is done, I will place my head on my pillow and rest. 

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...

hardest post ever to write

I have wrote this post so many times now...


in my head and on here and never actually hit publish...
I don't talk to anyone other than Dennis really about this...
and our kids...
we have asked for prayer from a few people but to actually sit and let someone know the whole sordid tale is almost too much...

I struggle to talk about it for lots of reasons:

1. worried how people will react or what they would say (most people don't understand Brain Injuries and so they rarely know how to react to that ... let alone a BI AND other issues)
2. hearing people tell me what I should do or should have done (condemnation for being a terrible mom)
3. having to look people who know in the eye and see 'that look' of pity or worse
4. I can cry at the drop of a hat... again
5. It brings back some bad memories

we are dealing with a lot of things with Samuel again. he is struggling with a lot of things as well... but he won't let us in to help and (I should say maybe its OR) he won't let us.

First of all, he has a drug problem. we don't know all the ins and outs of his use (and I don't know if I want to know) but he has a problem.  we know marijuana is one he uses... a lot.

He lies constantly. to us,  to others, to himself, to God... so much so that we can no longer believe a thing he says. Not sure if this is the drugs or the brain injury...or a combination of the two...  but it causes such grief.

He lives with depression and treats it with the drugs as far as we know along with ignoring it...

He is (and possibly still is - see above issue) in an abusive relationship with a girl. She mentally, emotionally and psychologically abuses him. we have seen her physically abuse him also. she is a  manipulator and very conniving. she can turn the table on someone so fast that they don't even know it. this girl we took in as our family, we loved her -- until she turned a knife on Sam one night and then herself -- and blamed it all on him. she has punched him and slapped him as well. Unfortunately, sam thinks he is helping her. He thinks she needs him. We have been told many stories about her and it worries us so much. she is slowly turning our sam away from us. I pray he sees this and her manipulative ways before things get way worse.

He can't seem to keep track of money (probably because a good portion of it goes to drugs or who knows where).

He has some medical issues that need to be looked after properly (not just partially).

He has lost his license many times and the latest is he has had his car impounded for 60days and has to pay a large amount of money to get his license back.

there is so many more things to say but I can't.  my heart breaks, my eyes cry, my brain spins.... and then I do it again.

I get so frustrated with all the time we spent after his accident trying to get help nothing physically but also mentally - so that he could learn to deal with his new normal... and NO ONE would help.  Now we are left with a man who can not deal with his depression, his brain injury or his abuse. He has never been taught... other than what we could try to help him with - which apparently wasn't enough.

I get so frustrated too that we FOUGHT so hard to get him to where the doctors were even amazed and this is how he is going to live his life.

He is spiralling down so much right now that we can only pray that it is the beginning of the bottom of the barrel...
but we have thought we were heading there so may times before it is heart breaking to get our hopes openly to have him keep digging that damn hole. he is caught in that vicious cycle of addiction and add the abuse to it...


This week I am going to be trying to see what we can do to get help for us. I will talk to the Brain injury association of Canada and see if they can point me in a direction of help (brain injuries and addiction is handled a bit differently than 'just addiction' I believe.) and if there is nothing on that path then I will call Teen and Adult Challenge and see if they can get me help. Along with prayer and faith that He knows how this story will end - because nothing NOTHING surprises God. I can't fix sam or his issues, but we can fix how we will react to him and everything he is going through - so we will do what WE can let God do the rest...

easier said than done...


I read somewhere that if your addict likes you, you are just an enabler.



so we need to stop.
that is just as hard to write as it is to say ...


... and even harder to do...

Be careful what you wish for...

I have many friends that are caregivers.
but we never talk really about its like to be a caregiver ... a caregiver in the many, MANY capacities we are all in... not really.
We talk at our BI meetings but we never really go in depth about what we go through, how we are affected or how we wish we could change things.

so to hear one of my dearest friends say to me yesterday that she has wished for many years to be able to have someone look after her for a bit made me tear up so fast and even faster, wipe those tears away and hide my own feelings of the same.
My friend has had her 'wish' "granted" but not in a way she had hoped. She was diagnosed and had surgery for cancer and is in a large, noisy, no privacy, not being able to eat (since Wednesday last week so far...) or drink... hospital.

With all the worries and stresses, that goes along with most people who are sick, have cancer, broken bones, fatigue... whatever...  and then the usual worries that those of us who are caregivers have about those we love:

Are they ok?
Are they taking care of themselves?
Are they taking their med?
Are they sleeping well?
Are they eating properly?
Is whom ever is supposed to be checking in on these things doing it and doing it properly?

I feel for my friend. I wish we lived closer so I could help more and she would be able to rest a bit better knowing that someone who understands her worries and concerns is looking out not only for her well being but her survivors too.
it is so challenge
But to go back to her 'wish'... I have wished that very thing myself on many occasions. It gets so tiring being the one who is constantly 'looking after' in one area/capacity or another. I don't think that you ever truly know who much a caregiver does until you have to be one. And that sad fantasy to have someone to have to look after me for a while ... sounds great... but....

but I know where the the balls would drop on that score. I know because in my day to day, my needs, my wishes go unnoticed every.single.day.

My survivors can remember many amazing things. Many MULTIPLE amazing things... they have a few balls in the air at once and not drop a single one... except that one.

me...

I feel some days like I should speak up, but then I know to do so will illicit hurt feelings -- no matter how loving and caring I try to come across.

Or it will be come a game of "well you never...", "thats not what I meant/said...", "I stopped saying/doing/helping because you said...." or the worst would be the listening and seeming to take me serious for a day or two and then drop that ball; and I am back to where I am now... hurting and feeling alone.

I wish we as caregivers were able to talk better about what we go through, but it is so challenging to do this... almost too challenging to open hurts or lines of communication on these issues as it feels like you are burdening others who already have their plate over flowing with their own stuff.  To tell others who don't understand BI survivors is almost as challenging as telling your survivor! It then becomes a came of "well thats just normal male behaviour ... "or "well my husband/son/dad {insert any female pronoun also} ...." and it becomes a great game of 'who has the best worst scenario" ...

So we bottle it up, push it down and keep on moving.

Until it hurts so much that you find yourself crying at songs, tv shows, memories ... anything that will evoke any kind of emotion and it comes out as tears.

My help comes from God and His Word... but somedays a real honest to goodness friend would NOT go amiss!

Sorry but not sorry for the whining... this blog is that friend...