Parenting Together

One of the biggest challenges for Shawn is how to be parent. He tries his best to be an effective parent but unfortunately the brain injury poses obstacles that we have yet figured out how to overcome. He has the hardest job of trying to figure out what role he is suppose to have. It is physically impossible for him to be the disciplinarian and also physically impossible for him to be the playful parent.  I sometimes feel like he just observes and watches from the outside. I try desperately for him to be involved and figure out his role but it is not always the easiest thing to do.  One side of it, we have older children who remember Shawn before the accident and have always struggled with how life and Shawn have changed.  Then we have our youngest who only knows his dad the way he is now. It was so strange when we were talking about the past one day and our youngest turned to his dad and said " daddy, you used to walk?”.  It never dawned on us that this was something so strange for him to overhear.  I love the fact that he is loving and accepting to anyone with a disability because seeing someone in a wheelchair is just so normal for him. It truly is a testament to how our children can adapt and just seem to know how to best accommodate Shawn.  It really made me proud and happy when I saw our youngest ask his dad to play a board game.  He went and got the game and set everything up on Shawn's right side, knowing it was the only side he can use and therefore reach with.  No one told him to do that, he just knew and it was a great feel good parenting moment for us both.  Even with the great moments there are still other moments that I know are so difficult for Shawn and something that he works on as part of his therapy.  Shawn's brain injury tends to put things in black and white and we all know with small a child that doesn’t always work.  Shawn is working weekly with his speech therapist to deal better with more abstract situations and not so much the absolutes.  Quite often he will get in an argument with our youngest about tiny little details that are not that important but for him he has a hard time just "letting it go".   That again is the brain injury so it will be an ongoing part of his speech therapy and just working on strategies when dealing with the kids.  About 5 years ago, Shawn's speech therapist mentioned to Shawn that maybe he could start asking our son what colour his shirt was, to help with him learning his colours.  Well every day for 5 years, Shawn has asked him what colour his shirt is.  You can imagine what kind of reaction he gets when he asks a now 6 year old what colour his shirt is, everyday for the last 5 years lol.  I have tried multiple times to get him to stop asking that and come up with something else and he said that he does it so he learns his colours.  I told him he is 6, he knows his colours!  It is just something that is basically stuck with him and we are desperately trying to stop that question!!  As annoying as it is, I know he means well and now we are trying new ways for him to engage in conversation without the constant questions.  It sounds simple but it is surprisingly difficult for him to come up with new questions and conversation topics.  It is a constant challenge to try and parent together but well worth every frustrating question because it is how he feels he is having a part as a father.   However, it is also very sad for me knowing that our youngest will never know the dad that Shawn would have been if life had dealt us different cards. It makes me wonder who is more fortunate the kids that remember who Shawn was/is with the incredible wit and sense of humour and playfulness with his kids or the child that will never know that entire side of his father so therefore can’t miss it.

Celebrating the accident anniversary

Well we just past the anniversary of the date you don't ever want to remember again but also the date we can't ever forgot.  We acknowledge this date because 7 years, March 12, 2008 was the date that our lives were impacted so greatly.  To some people it may seem strange or depressing to remember a day so traumatic but how can we not acknowledge it.  Everything we knew, who we were and who we are now was all impacted from that date.  There are lots of dates throughout our lives that we remember and luckily most are happier memories but some are not.   Just today for example, I was doing some spring cleaning and getting rid of old clothes and stuff we no longer wear in our closet and I come across the same old stuff of Shawn's that I just refuse to throw out.  He no longer wears a certain pair of pyjama bottoms or an old hoodie that is just to hard or too small to get on but I refuse to throw them out.  They are things we owned before the accident and I can still picture him wearing them today.  They are nothing fancy or expensive but they remind me so much of him pre-accident that I will never throw them out.  It is almost liking going through the belongings of someone that passes away and you just can't get yourself to get rid of them, that is how I feel, except Shawn is still here.  In a way though it is the same because with a brain injury part of that person is gone so you always feel that loss.  I rarely think about about that time in lives anymore except in times like today when I see those old clothes and I make sure they stay in the "keep" pile.  So each year on this anniversary, I will not allow myself to get sad and mournful about what happened 7 years ago but I will celebrate our strength and our love.  I will remind myself that no matter how crappy things are, I have my soulmate by my side and he survived and is with me everyday to enjoy life with.

New travel blog

Recently I started another blog chronicling the travels we have been on and the many challenges we face as a family finding accessible vacation.  However, I am not replacing it with this blog because I think talking about the challenges of everyday life is equally as important.  Sure blogging about trips and such is fun and definitely the few weeks out of the year we can escape.  As much as enjoy ourselves travelling, the things I talk about here on this blog are real life. 

If you are interested in following the travel blog as well the website is :

https://accessibletravelling.wordpress.com

Thanks everyone J

Adapting as parents

Parenting is a challenge to begin with but having a brain injury and in a wheelchair definitely poses more challenges than anyone can imagine.  When our youngest was born, I did whatever I could to make sure Shawn was a part of the birthing process.  We brought in a Doula to assist with the delivery and to make sure Shawn was as much of a part of the birth as possible, since I would be a little busy.  I even went so far as attempting to be induced before my actual due date because our situation did not allow for a surprise quick delivery scenario.  Unfortunately that induction did not put me in to labour and I was sadly sent home.  Nothing worse then heading to the hospital thinking you will be leaving with your baby but just sent home and told see you again sometime soon.

However, I did go into labour on my own, and it couldn’t have worked out better.  Shawn was there the whole time and was able to be a part of the entire experience and held his son right after he was born.  At the time, we had incredible support staff that took care of all Shawn’s needs at the hospital and then after he went home and I stayed at the hospital for a night.  I pretty much rushed myself out of the hospital because I knew I had to get home and take care of Shawn and my other children so I was home less than 24 hours after giving birth.

When the baby was little, Shawn participated in bathing time and bottle feeds with the help of some assisted devices that not only helped him, but also kept our son safe while Shawn held him.  It was such a beautiful time for the both of them to share.  Part of Shawn’s speech therapy was to read books to our son and sing to him.  I made sure to take lots of videos of those days to show our son someday.   As our son grew up, he learned that going for rides on daddy’s power chair was a pretty cool way of getting around, so he went from riding with him in a front carrier to sitting on his lap.  I even at one point contacted a non-profit agency in the area that had volunteers that would come up with ideas to adapt any equipment to help the disabled with every day life.  My vision was for them to create some kind of attachment to Shawn’s chair that we could hook a child carrier too.  Sort of like how you attach the car seat into the car base.  As much as my idea was great, it eventually came down to not feeling that any solution would be safe enough and of course the liability of anything to do with child safety and car seats.  So we junked that idea.  Since our son was born after the accident, he knows his dad no other way, which is special in itself.  Our older children do remember their father pre-accident so it has been a harder adjustment.  I believe the closeness they shared is just not there anymore and that makes me very sad.  As hard as I have tried to bring their worlds back together, I know it is just not the same.  They still love him very much but just transitioned harder because they were just at very hard ages to deal emotionally with all that took place and still takes place.  This entire subject is definitely something that I can go on and on about and I plan to share more of the challenges and successes we have encountered.  Even though this blog entry focuses more on Shawn, then as being the spouse or partner, it all does interconnect with each other and the bases for the new way we have had to parent together.

Dealing with judgemental people is not fun

I sit down at my computer to finish plans and confirm plans that we have for a family trip we have coming up.  As I sit here, I find myself thinking about why sometimes I feel like I need to justify our trips.  I know I shouldn’t have to explain to anyone why we are going away again but I do.  Should I stop and look around at who I am explaining this to and sort of realize they are the problem not us.

Anyone who feels resentful or even jealous that we are able to take a trips are the ones with the problem because they don’t see the big picture.  I once wrote an entry for my blog, after a few drinks I might add, that was to do with this exact situation because some comments had been made about this very subject.  I never posted what I wrote in my blog because it was written out of anger and I thought that was not appropriate.  However, I am going to share it but with an edited, toned down version.  It obviously was something that was bothering me at the time and as much as I should not have to explain anything, it should be something that is said. 

I don't know why but I still seem to get fascinated and frustrated by the comments made by some people around us.  

To the outsider they look and see "hey, they can buy a new house" or " it must be nice to go on vacation" but at what cost did material things come at.  If your loved one lost the ability to ever walk again, would you not at the very least, expect that life could grant them some comfort.  Could you possibly understand what it must be like for Shawn to never really get fresh air in these cold winters because with all the snow his wheelchair can’t drive through it?  So is getting out of the cold wweather for a measly 1 or 2 weeks a year a privledge?   To call someone lucky in this type of situation, that they can go away to somewhere warm each year, is disgusting.  Yes, we do get to go away somewhere warm each winter but we will never know what is like to experience something so simple like walking hand and hand along the beach.  How about it taking months to plan that vacation because you can never just have a quick getaway to a beach resort in the Caribbean?  It is pretty much out of the question for us because we need to have access to medical equipment not offered in the south or even have a guaranteed wheelchair accessible room.  They do not have the same rights to disabled travellers down there.  Would you book a vacation where you were not guaranteed access to a bathroom or even a shower?  So anyone who calls us lucky for a life that allows us to take a vacation each year better look at what was sacrificed to allow that vacation to even take place.  I know lots of people that take regular vacations so why is it such a topic of conversation that we do?  Of course, there are those that we care about and cherish more than anything and those are the ones that would never for a second look at our situation and think any of these thoughts.  They know that whatever happiness and fun we can find is something that we should have and deserve to make up for all the crappy stuff that has happened and still does happen.