Wednesday, December 18, 2013

What is normal?

So I know it has been a over a month since I last posted and let me tell you it feels like yesterday!  The days seem to fly by like hours and the weeks like days.  Our schedule is very hectic between day rehabilitation, hydrotherapy and holiday hours at work.  Most days I wouldn't know if I was coming or going if it weren't for the 6 calendars we have synced on our phones.  We are very blessed to have so many great people in our lives as well that help us manage the day to day schedule.......neighbors, friends, family and coworkers that have stepped up and offered to help in any way possible.   

On with my title........What is normal???

So as I was walking upstairs tonight carrying Cam's new bath/shower chair I realized that this is my reality, my normal.  My normal has become a gambit of medical equipment that is suppose to make our lives better and easier and for the most part, this is true.  Until you take into account that we live in a split level home and don't have a vehicle that is wheelchair accessible, that doesn't bode well for this type of lifestyle but it's our reality, our NORMAL.  Today I spent the day with Cam, lifting his now 70lb titanium wheelchair in and out of the back of our van, as we did the last of our Christmas shopping then came home and put him into his stander for an hour and then carried his chair and him into the shower and never did I once think about how much simpler life would be without all of the equipment until Cam told me he was ready to shower and rather than say OK go for it, I had to say "give me 5 minutes to get it ready"............that my friends is the difference between your normal and ours.  One is not better or worse, harder or easier than the other, just different.  I schlepped his extremely heavy chair in and out of the van without question or hesitation 15 times today, meanwhile watched others frustrated that their child was not getting in the car fast enough or not walking fast enough and could only think to myself be happy that he can get himself in the car and be patient while he figures it out.  Be happy that he can walk down the aisle of Target and you don't have to strain your back carrying him or his chair, but I guess you can't expect people to understand that until they've experienced something other than that.  Everyone gets comfortable with what they feel is "normal" and that is exactly where I am.  I am comfortable with where we are.
Cam in his stander

His new bath chair

Cam is happy and works so hard every minute of every day trying ot reach his ultimate goal of standing independently and still holds onto the hope that he will take a step, just one is all he wants.  He has never once through the entire process siad he can't, he won't or he doesn't want to.  I'll be honest, there are days when I lay in bed when the alarm goes off and say I don't want to get up, but that never happens with Cam.  He is always ready to go to therapy and works hard during every session.  He has made some incredible strides in the right direction.  He can now walk for 15 minutes on the treadmill, in the harness, he can complete 2 laps at the rehab facility in the gait trainer and can tolerate his stander for an hour.  The tenative discharge date for his day rehab is Jan 17th and from there he will begin an outpatient PT program and continue to work on strengthening and stretching at home. 

I have sat down many times to try and write thank you notes or make cards for those of you who have supported us and Cam through all of this and can never get it done.  I have so much to say to all of you, but can never seem to put it into words that fit in a card.  In fact, I have so much to say that I draw a blank every time I try and write them out.  The emotions of all of your support and generosity are completely overwhelming and I am unsure how to say Thank You in a way that is big enough to represent how we feel.  

This time of year especially makes me appreciate every moment  and everyone in our lives.  I have a  very dear friend who is going through the holidays for the first time after losing her daughter, another friend whose mother only has a short amount of time with us, the anniversary of my grandmother's passing and numerous people who are overcoming their own struggles everyday, it's pretty hard to not appreciate everything we have and are blessed with each and every day when you put it into perspective. 

I often have people ask me "how do you do it?"  Well, let me put it this way.........what choice do I have?  This is the hand I have been dealt and I wake up everyday just like you and face the days challenges head on........I just choose to do it with a smile on my face and a great sense of humor :)

Happy Holidays and hug the ones close to tight and love them with every bit of your heart every minute of every one is promised tomorrow so enjoy today!