last week ...

last week daddy had been sick. I ad gotten a phone call from the care home saying he had a very high fever and they assumed he had aspirated which was the cause it not only the fever but the raspy, rattling chest noise. Each time he gets sick I am preparing myself for the end of this journey that we have been on with him for the last 24 years. I pray that his pain and discomfort are slight and that if it be ...it is quick, for all involved (dad, the care home aides that work with him and us... me). It is an exhausting time when he is sick, because I feel such pressure being the only one to do anything with him. I don't call any family.. they all live far away and only one (my aunt - daddy youngest sister) that keeps in contact with me. so it sits with me. I wrote this last week while sitting ... once again, with daddy. 

He is better now (or at least he has had no fever) and the next few days again will tell if he is actually "better better" or if there will be another round of meds, if the chest has cleared... until the next time he aspirates or an illness goes through the care home.

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Once again I am sitting here listening to your breathing, so rough and ragged… your bed humming from the weight of you on the mattress, a Frank Sinatra movie on the tv and the day to day noises of the care home. Your spirits are a bit higher than they have been other times but you are still sick.

Yesterday afternoon I had a call from the care home that you were not well. You had a high temperature and your breathing was raspy. They think you possibly aspirated so there was a call to the doctor and medications ordered as well as the nebulizer. So we wait to see what the meds will do. And this morning when  I got here to hear your fever was down and you ate a bit at breakfast, so we sat, I read the bible to you, I prayed for you and I sat and we watched an old Dean Stockwell movie and you look so frail and tired.

Now it is afternoon and you are back to bed (you look exhausted). I tried to get you to sing a bit (something that you love to do) and you didn’t want to. You said you wanted to sleep for a while. 

So here I sit…

listening… 

praying...

remembering...

Reminiscing in my head. Thinking of all the times we were riding in the semi’s, eating at McDonald’s (and me ordering those extra thick chocolate milkshakes that you hated to hear me try to suck up!), the songs we would sing, the driving lessons, the shopping mall adventures, the laughing over the burnt pudding and fish cakes. 

My memories are all so vivd, and yet the one thing I cannot remember for the life of me is your voice. 

I cant hear your laughter and calling me “jo”… I wish I could. I would love to hear you roll over and say to me right now “Jo, lets sing some Merle Haggard.” Or  “lets go for a drive and see what we can find.” I can't hear you and haven't been able to for years and I miss that.  I can't wait until we are in heaven and we can talk... two sided conversations! 

I love you, daddy... 

I miss you...

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!?

Just a quick update!

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

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

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

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

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

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

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

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On a more cheery note:

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

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

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

sometimes I just feel like ....

Maybe it is more of a pity party thing but sometimes it is just a plain and simple I am exhausted from it all.
I am tired of advocating
I am tired of phoning, emailing, reaching out to others only to be let down and ignored (well that is how it feels to me anyhow)
I am tired of watching out for everyone
I am tired of not having others to confide in about everything that is happening
I am tired of feeling so alone even in a house full of people


I have been working hard on getting stuff out there and trying to get some people to listen and possibly help me in some way.... but so far I have had a butt load of people tell me to send them emails with our story and pics of what I am doing and trying to do. I have had them tell me they will get back to me via emails, phone calls, meetings etc. and so far no one has. It is very discouraging and I am seriously tired. I didnt start this part of our life so that I could waste precious time with the rest of my family and friends to be treated like a nobody -- and that is how I feel. I have others emailing me wanting things that cost money that we dont have. I have people emailing me asking me to do more for THEIR cause but no help in return. I have learned to not share any information about the emails and calls I get... but then there is stress built up as I am the only one to deal with it all...

The past few years I have been very busy from Jan to June trying to spread awareness and help educating the public about brain injury awareness. This time has taken a toll on my family  and I wonder if it will be worth it in the long run.
Dennis wants me to focus on one area of awareness- which I have been trying to do. My dad doesnt seem to know or care one way or another and Sam I think would honestly just like me to stop altogether.

I did not start with helping educate the public about brain injury for fame and fortune... I did it in hopes of bringing awareness to the public so that if someone finds themselves in the same spot I was in (with my dad, Dennis and Sam) that they would A. not feel so alone B. know that there is hope C. maybe have a bit of an idea where to start when it comes to looking for help or support

Have I bitten off more than I can chew?

Is it time to throw in the towel and admit defeat?

Maybe the time has come to walk away and let someone else take over?  

I dont know what to do anymore....

Helping spread awareness

I have 400 of these and they will each have an oak leaf pinned to it to wear on your coat, shirt, hat wherever!! I am so excited to get them out to the public and help spread awareness of Brain Injuries! If you want one or more let me know! Any donations for the bracelets will go to the Manitoba Brain Injury Association or donate you your local Brain Injury Assocation!