Stress and worry takes a toll...

College Roommates!  804B

This past weekend I was able to take a day off from work, but in a rare turn of events, I also had the entire house to myself.  My extended and solo weekend was busy, I occupied myself with tons of laundry and house work, the hopeless effort to complete my thesis and I also worked on catching up on my DVRed shows (which I owned, more so than my thesis).  Mike took Olivia to visit Grandma, Mike's Mom, and I had almost 2 full days to myself.  I thought it would be just what the doctor had ordered... some much needed me time.  And don't get me wrong, I enjoyed the ability to lay in bed and do absolutely nothing.  NOTHING.  I cannot tell you how long it has been since I have experienced the act of doing nothing (actually it was about 19.5 months ago...)  But after I did all of the necessary work that needed to be done, and I finally had a chance to sit down, I realized, this isn't my life anymore.

I think the progression of responsibility makes sense.  When I was younger and my Mom would ask me to set the table or unload the dishwasher I would have a near melt down and bellow that "I always had to do it".  (PS.. I don't know how my Mom and Dad had THREE of us).  Even the simple act of re-stocking the toilet paper on the roll seemed to be a challenge when I was a teenager because who has time for that?  Then college comes along and you are given the chance to basically make up your own rules (as long as it only takes 4 years according to my parents) and you get to have freedom.  Freedom to decide to go to classes or not, to stay out late or turn in for the night.  You can decide to lay in bed all.day.long and watch TV if you so choose.  Your responsibility as a college student is to go to school and get good grades.  Period.

However, as a parent there is one choice and that is to take care of your child.  Even if you are sick and they aren't sleeping or are sick as well.  Even if you just turned out the light at 11PM and they start crying at 11:20.  Even if you really need some Mommy or Daddy time, your responsibility is to your child.  I make parenthood sound so amazing, right?  But it is a responsibility you have worked your way to over the span of your lifetime, without ever even realizing it, everything you have done has prepared you to be a parent should you so choose.  Unfortunately, the new responsibility of parenthood doesn't leave much time for lazy days watching TV.

I attempted to relish in the rare moment of alone time but instead, I found myself worrying.  I worried that I should be doing something more useful or productive.  That I should have gone with Mike and Olivia.  Which then progresses to my worrying about Olivia and her needs and are they being met?  What more can we do, what are we not doing?  Worry.  There is no relaxing time as a Mom of a child with CP or really as a Mom of any child.  There isn't a guide book, a resource tool, a script.  The term "winging it" is pretty much the definition of being a parent.

I think all this worrying may have taken a toll on me.  The first few days of this week I have been walking around with this anxiety, this fear and a despair like I have never had before.  There is this pit in my stomach and I just couldn't place where it was coming from.  Then I realized that while I was "enjoying" my alone time, I had also allowed my mind time to explore Olivia's delays and give this area a great deal of thought.  When Olivia was younger the fact that she could not roll over the same time as her peers was simply not urgent.  I knew she would get there, but the ability to roll over or not roll over did not really put her at a disadvantage among those in her age group.
 

In a still frame it is hard to see the effects of CP on Olivia, but it is there.  Her hand is in a tight ball with her tiny thumb sticking just out of her fist.  Her arm is clutched into her side, a comfort mechanism and point of stability for Olivia.  Her right foot turned ever so slightly, rarely kicking as frequently as the left, rarely moving at all. These small differences in a picture are magnified in real life and real time.  In reality, her inability to walk and move like her peers is reeking havoc on not only her clothes through the holes that are caused by friction from scooting, but also by the strawberry that forms from the constant movement along her upper thigh and bottom as she works to move in her own way, and at the same time injuring herself in the process.  Simultaneously, our increased therapy is taking a toll on Mike and on me.  The guilt of missing work and the stress of being absent and the juggling of schedules is difficult to constantly maintain.  The responsibility is palpable.

Our world of parenthood is different.  Our lives are different.  And this weekend I began to realize that Olivia's life is going to be different than those around her.  This is probably a reality I should have concluded a long time ago.  I continued to digest this information and wrap my mind around this world where Mike and I have to simultaneously figure out everything as a team, but also maneuver this uncharted territory for our family.  This is not an easy road and I constantly wonder that if she just reaches this walking milestone will it get easier?  Will the stress simply wash away?  But I know it won't because then it will be something else, a new milestone to worry over. 

As we took our family walk tonight I suggested we turn down a different road then our normal course.  And the result was more than I had anticipated.  As we approached our home from a completely different route, I realized that we still had arrived at our destination, we made it home.  So while Olivia's journey is different, it is her journey and it is only a small portion of what makes her one amazing little girl.  So for now I am going to worry less about the path she takes because I know in the end Olivia will get to where she needs to go.