Sunday, July 15, 2012

A smile isn't always a smile

Being a parent is by far the most difficult job I've ever had.  Being a parent to a child with special needs is that much more difficult and emotionally draining.  People often ask how I "do it"....raise a child like Zachary, that is.  The short answer is there are some days I'm not quite sure; I just do.  The real answer is that the sheer will to protect my child and be his voice when he cannot speak for himself and help him move forward when he is unable to take these steps himself always trumps my desire to lay on the floor and cry.  It always will.  And, I can promise you, there are days I'd rather lay on the floor and cry.  There are more days like this than you probably even realize because a smile isn't always a smile. 

There are days you see me and I'm smiling, but happiness is the farthest thing from my true feelings.  There are days that my smile and laughter are nothing more than a convincing mask for sadness and fear.   For better or worse, I've become a master at walking out my door with a smile on my face although my heart was breaking into a million pieces a second before.  I think many parents to children with special needs have mastered this skill.  Very rarely do I allow anyone other than Joe into that part of my reality just because I'd much rather laugh than cry.  Unfortunately, life doesn't amount to one big joke, so, like it or not, there are times I do feel all sorts of negative emotions.  No worries.  I'm not emotionally stunted or in denial.  I do breakdown in the comfort of my own home with the support of my husband just like I did tonight.  I break down, talk it out and cry when I need to because if I were to not do this, I'd literally have a breakdown, and who really has time for that??!!  Well, tonight an overwhelming level of sadness struck as we were leaving the Promenade Shoppes and tears started streaming down my face while I stood next to the truck with my face buried in Joe's chest after the kids were buckled in.  You know I had to feel truly overwhelmed  because I rarely break down in public.  Almost never.  And, if I feel as if I'm going to, I've become quite adept at stopping myself.  I do it more than you even realize.  In fact, I've done it right in front of you.  I'm that good.  A smile isn't always a smile. 

We had so much fun at the fountains tonight.  It's very relaxing, and Zachary and Allison love it there!  It's especially fun around dinner time when it's not nearly as hot and crowded.  After the fountains we either go to Red Robin for lunch/dinner or Millie Moo's for some ice cream.  Tonight, we had dinner at home so it was Millie Moo's.   As we sat on the bench eating ice cream, Zachary noticed a lot of older kids walking around.  He loves to people watch and talk about what he sees.  He asked me if he could come to Millie Moo's with his friends one day.  I told him that he sure could once he was a little older, but the reality of this statement is that Zachary doesn't have any friends to come to Millie Moo's with.  At that moment, the truth about Zachary's reality shattered my heart into a million pieces; I felt like I had been punched in the stomach.  Sure, he's got kids in his life that he considers his friends and who are very kind to him and like him, but it's an entirely different type of "friendship".  Zachary so badly wants friends and wants to do "normal" things.  At the same time, he definitely recognizes on some level that he's not like other kids and can't keep up with them or play like them.  Zachary understands what friends are, but he doesn't quite know how to manage it in the long term so he resorts to what he does know and what he can do which is not what other children are generally interested in.   I can't even imaging how frustrating and confusing this must be for him.  I do know, however, how painful it is for me to witness. 

Joe understands my sadness and fear because he experiences it, too.  We are the parents of a child with special needs, and it's not something you can truly understand unless you're living that reality.  I'd be lost without Joe because no one understands me the way he does.  No one really can.  People will tell me in one way or another that they understand, but they don't.  It's not because they don't want to or don't genuinely care; it's because they can't.  It's honestly nobody's fault.  There's just no way they can.  I don't get mad when people tell me this because I know it's well meaning, and I always appreciate the support.  Raising a child with special needs can be very isolating and lonely, though.  It's very easy to get lost in the shuffle of the normal world the people around you live in.  It's also very easy for the people around you to lose sight of your life because they're not contending with issues nearly as significant as you are.  They may think they are, but they're not.  Not even close.  My life is about perspective.   From my perspective, I can promise you that whatever you perceive as the end of the world as you know it in your normal life probably is not.  It's likely just a minor irritant.  Being told, however, that your child has a life-long disability in which there is no cure...that's the end of the world as you know it.  Sorry.  Just being honest.  It's where I'm at tonight.  

The next time you see me smiling,  please take a moment to step out of your world and consider where I'm at and what I'm going through in my world.  I have no choice but to do this for you as 99.9% of the people I know live in that normal world, so reach out and please remember that sometimes a smile isn't always a smile.