Sunday, September 16, 2012

Just A Sunday

This morning, I feel the way a Farmer must feel after he’s sowed, planted, and harvested.  The serene feeling of reaping what you’ve sewn; A certain calmness in knowing that you’ve created something and you can now see the outcome.  Enjoying a cup of joe while you stare out at the wide open space before you.  I’ve never been a Farmer, and I know absolutely nothing about farming, but I can imagine that satisfying feeling.  The reason I feel this way is because it’s a peaceful, unplanned, Sunday. 

Normally, throughout the summertime we have every single weekend fully planned and scheduled.  As fall sets in, there is less and less demand for this type of stress.  Living in Colorado, the winter holds its own routine, but with the holidays thrown in it becomes stressful again.  So, today, I enjoyed a rare fall morning of sleeping in (yes, all of us!).  As I lay awake but still, Jake awoke, came out of his bedroom, did his full lap of the house like normal and promptly went to the bathroom.  Then, I heard him choose a quick snack and go downstairs to his computer to entertain himself.  While this may not seem like a big deal to most, it IS a big deal to us. 

When Jake was little and finally able to sleep in a “big boy” bed, the evenings were filled with continuous trips to and from his room.  We would take turns putting him back in bed and as soon as we sat down, he’d come right back out.  We dealt with this annoying routine for what seems like a few years (I suspect it was months).  Then, Joe was born and our nights were filled with sleeplessness and frustration.  We took turns getting up, comforting, changing diapers, and attempting to soothe.  No matter what we tried, our days were ridden with dark circles and puffiness under our eyes.  Our patience was weak from lack of sleep.  This I remember well.

As the boys grew, our days became filled with school issues beyond what any one person should have to know and learn.  The constant barrage of demands was exhausting and numbing.  In fact, I hardly remember the minor details….I think it’s selective memory retention.  We were forced to juggle work schedules, the daily care of 2 boys with severe developmental disabilities, constant behavioral issues, getting from one therapy appointment to another, and back again the next day.  I look back on this time and wonder how I survived.  I think I was just going through the motions without any real thought or plan.

When we finally came to the realization that we had to do something significant in order to survive, things started to happen.  We compiled a real team consisting of friends, expert therapists, teachers and doctors.  I realize now, that the biggest shift was making it past the emotional hurdles that were holding US back.  Once we were READY to learn and do what was needed, things moved forward instead of backward. 

I remember the biggest discovery of all, and it still holds true today; we HAD to provide the boys what they needed both in the brain and in the body.  When you are faced with multiple essential deficits, this becomes the biggest challenge.  So, how could we provide all of this?  WHAT do we need to provide in order to meet these needs?  This is where the work began.  Experiments were started and stopped.  Once we saw results and knew what worked, we were able to progress.  This is all just words now, but the real work took years.  Each of our boys had different things (of course) that worked and didn’t.  But, with the help of others we were able to make those important discoveries that would help us move forward to today.  In the end, we learned how to work together as a family.

We set a simple goal for our boys…to “Be able to be as independent as they can possibly be and to be contributing members of society at whatever level they can”.  This goal alone helped us to see the future in a much more clear way.  We were able to decide what their future MIGHT look like based on what we knew that day.  There is no way to fully predict the future, but if we have a goal, we can work toward that.  We know now that we want our boys to be able to live in our home when we decide to leave.  This means that we need to help prepare them for doing as much as they can on their own, even when it’s something as simple as getting up, getting to the bathroom, getting breakfast, getting dressed and getting on with their day.  Even though this may be simple for us, it has proven to be a learning experience for our boys.  Being able to see them in this home environment daily helps me to break down what is still needed and see the improvements so far.

Being able to learn simple things like taking care of themselves (we are STILL working on this every day) and to move through their day independently but with assistance, or to be able to anticipate and cope with upcoming transitions.  These are HUGE achievements.  These are goals that we know now they are capable of meeting.

Nothing is simple, but nothing is impossible.  We know now that they CAN do it.  This morning was clear proof of that.  It truly is the simple things in life that bring me joy.