You never know what you are capable of

Every now and then I get praise from people I barely know. As much as it is nice to hear once and while, it is also a bit embarassing. I am no saint or different then anyone else really. Most people don't know how they would react in the same situation and they assume they would act different than I did. Yes I am and have always been a strong person but I don't know how much that plays a part in it all.  I honestly believe my deep true love for Shawn is what impacted the way I handled what has happened. The other stuff like the "business" side of it definitely takes a certain kind of person.  While most people can become the detailed organized "take no nonsense" type, I was always that person. So in that regards, yes it does take a certain kind of person. However, not every situation requires you be to like that, having to handle life living with someone who has extensive needs like Shawn. It just helps that is for sure!! The fact that I didn't run for the hills and stayed and dealt with our new life is definitely the result of not ever wanting to leave my soulmate and the man I love with all my heart.  I remember sitting in that first initial family meeting just weeks after Shawn's accident and being told there was a slime chance he would ever return to living at home.  Instead of breaking down and giving up, I thought "well, that is never going to happen so I need to figure out what I need to do to make sure he comes home".  I never gave up and no matter how hard things got and how difficult the situation became I always knew that I would never give up.

Importance of taking time for yourself

Taking time for yourself is easier said than done. I am sure everyone is guilty of not taking enough time for themselves and I am definitely guilty of it myself. Since I not only have to worry about making sure the kids are looked after, but I also have the much more difficult task of making sure Shawn is looked after. It is not as easy as having a mother or mother in law come and stay for a few days, like you could with the kids. It is much more complex and detailed because Shawn has a very busy therapy schedule, personal support worker schedule, medication schedule and just the necessary skill to be able to transfer him and tend to any required medical and personal need at any time. I have to make sure trained personnel are with him during the day up until he goes to bed. For any overnights that I am away, we have been fortunate that family members and friends have stepped up and helped out. Most of the overnights have always been to attend one of the kid's out of town sporting events or a weekend trip to visit family just a few hours away. Just recently I took a long overdue "respite" vacation with one of my closest friends and my daughter. As much as it was wonderful to get away and de-stress, it was only a couple days in that I really missed Shawn and the boys and couldn't wait to get back to them. It feels like the amount of preparation and planning it takes to get away for some respite time may not be worth it. However, I think without a break and alittle time away I would most definitely suffer from some caregiver burnout. Plus it makes me miss them that much more!

Today I am thankful for so much.

Well since today it is Thanksgiving and without sounding cheesy, I really do have a lot to be thankful. As much as life has been traumatic and stressful these last few years, at least I still have my family together to celebrate it with. I have known many families over the years through the brain injury world that have had significantly harder struggles than we have had. For those that I have met over the years, whether at the hospital, during rehab or even at the multiple brain injury events and conferences I have attended, I think of them often. I read a quote recently that put so much in perspective, and made me appreciate and be thankful for what I have and not for what I have lost. The quote was "The things you take for granted. Someone else is praying for".  There are families out there that I have met personally that would give anything to hear their loved one speak or even express themselves non-verbally, be able to move around independently in their wheelchair and most importantly be able to have them at home but cannot due to the overwhelming medical needs. So yes, I am thankful today because my husband can do all of those things and we can live our lives together in our "new normal". 

Things are finally moving in the right direction

In my last blog entry I wrote about this new chapter in Shawn's rehab on the Physio side. I have to mention that this isn't necessarily a new chapter, but a bit of a catch up to where he was when we left the city we used to live. In past blogs, I wrote about the challenges we have encountered since moving and this is another perfect example. His new PT actually apologized to Shawn that there has been an interruption in his physio and lost some of the gains that took years to accomplish. However, we don't want to look back but look forward. We talked about short and long term goals and in those long term goals was the word "walking". Not walking like losing the wheelchair but actually the possibility of taking 1-15 steps with assistance with a quad cane. I am so excited that this may be something that could be accomplished. It has been so long since anyone thought this was even possible for Shawn. It brought such hope back for the both of us, especially him. I think a part of him had given up on it ever being possible. He worked harder in that first one hour session than I have seen from him in over a year. I am very excited to be able to share this new chapter with everyone as it has brought back a bright light that seemed to be dimming over the last few years. 

Having hope

Just this past week Shawn and I had a chance to meet with a Physiotherapist that just started her practice specializing in brain injury.  You go to these initial meetings, post injury of 6 years, and you know you are less optimistic than you were in the beginning. I sat in this meeting feeling like the person I was so critical of just a few years ago. This new therapist was so full of life and energy and she talked about all the things she was going to try to get Shawn to do. As I sat there listening, I thought about how it had all been tried before without much success.  A few times I interjected and let her know how attempts had been made with her suggested course of treatment and it was unsuccessful. Then I stopped myself because I realized I had lost a bit of the drive and passion and hope I had a few years back. Just because it has been 6 years doesn't mean that gains aren't still possible. I think about his progress with his speech and how people are still telling us how clear and easier to understand he has become since just 6 months ago.  So why can't the physical deficits have the same improvements after all these years. This just may be the time to try all those failed attempts at the standing and walking he tried in the early days. I found myself having hope again and it is the most amazing feeling.  

A truly amazing man

I sit here and I look at Shawn and wonder how he does it.  I wonder how he can sit and watch golf on TV and listen to his friends talk about a recent golf game they had and he stays so positive. Yes he misses playing his favourite sport but instead of becoming angry or upset that he will never do it again, he just accepts it. I wonder what goes through his head when he watches his friends help out with home maintenance repairs that I can not do and he is not able to do. He doesn't get resentful but extremely proud that he has such supportive friends who lend a hand when needed.  Even when he crosses paths with past friends, who no longer acknowledge him, due to whatever reasons they use to justify their behaviour, he remains positive. Instead of being angry with those people, he feels bad for them that they don't feel they can speak to him to see that he is still the same person. All of these actions just reinforce how I feel about this amazing man and who he was before the accident and who he still is. If a brain injury emphasizes a certain personality trait that someone already has, then I consider myself lucky that the amazing man I feel in love with, is just as amazing if not more than before. 

Remembering the past

This past summer I sat around with a group of friends and we talked about the early days of Shawn's accident. Some witnessed it first hand and others only heard about it through others. It is when I recount those events that I am truly amazed by what the brain remembers and retains. Most days I can't remember anything without putting it in my phone and setting mutilple reminders but that day and the ones following I remember vividly. It brings to mind the old lady from Titanic. She retells her story about how she can remember the smell of the fresh paint after 84 years. It certainly hasn't been that long but after 6 years, I remember what I wore that day, what Shawn and I had for lunch, the smell of the ICU and every word spoken to me about his condition. I remember the feeling like I was going to pass out, the feeling of absolute denial and that I was in a dream and none of it was actually happening.  To this day, I feel the same overwhelming grief I felt that day, when I retell the events surrounding the accident .  Why would such trauma make our brain hold on to these memories that never leave yet the happiest days and times of our lives, like when are children are born and growing up, seem like a blur?

One step forward another step back

It is hard to believe that it has been a year since I last posted to this blog. I had such high hopes for myself that I would continue posting in hopes of making a difference for others in the same position as us. This past year basically kicked my ass and it has been a constant struggle to find a great balance of staff and therapists. We have had many support workers come and go and even switched up some approaches to therapy. It finally dawned on me months and months ago that we were not going to find what we left when we moved. I realized changes needed to be made so we decided to get creative with how rehab was going to happen. One of the major successes we have had, is that since we could not find a speech therapist anywhere near the calibre we needed to alter the approach. Since technology is an amazing thing, we started Skype sessions with the SLP we used to have. She may be 3 hours away but with this style of rehab the quality of therapy is unchanged and there is no travel expensies required. It may not work for everyone but it works for us. Anyone who knows me knows that the travel expenses associated with rehab are hard to swallow since the cost is almost the same as the actual therapy.  If there is a way to use the rehab money more effectively this technique is it. However, it may not work for everyone, especially those in the early stages of recovery. I am happy to say that this is one of the few rehab changes we have made since moving that has been beneficial. Hopefully there will be more to come! I am trying to be patient.