Wednesday, May 23, 2012

The search for balance

I wrote my last post following several frustrating and discouraging days.  I am still trying to find my own path in this new world I am living in.  I am still torn between wanting to protect my son and keep our lives as normal as possible, and at the same time wanting to embrace our new world, to talk about his condition and share all of the issues we deal with.  I am still having a hard time talking about everything with my family and friends...  I need to find a balance...

On one hand, I don't want anyone to feel sorry for us.  I don't want to appear ungrateful or petty - there are worse things to deal with in life than having a baby who has a developmental disorder.  And I don't want to let PWS take over Levi's (or my) identity and become all that I talk about.  On the other hand, I DO want people to understand how hard it is!  Even though there may be worse things in life, it IS kind of a big deal.  I don't want to downplay his condition so much like it's all super easy and I'm handling it swimmingly.

I have never been one to talk about myself a whole lot.  I am the baby of my family and grew up as more of a listener and questioner.  A lot of my family/friends are more talkative and so in conversation I naturally do more listening than discussing my own life.  And I'm suddenly in a position where friends and family are now often asking me, "how are you?  How is Levi?" and looking for an answer that consists of more than my usual "fine."  I just don't know what to say.  Really it's that there is *so* much to say that I don't know where to begin... so I say"fine"... which is not an accurate representation.  At all.

When I do start sharing about different situations we deal with, I feel the anxiety start creeping up in my chest and throat.  This makes talking about things feel stressful.  I think this is all a big reason I started this blog - as a way to try to "get it out" because I'm so very good at usually keeping it all in.  Pushing it down and pretending it's no big deal.  "I'm cool, I'm good, I don't need anyone to worry about me."  That is my usual MO.  I'm an avoider.  I admit it.  And it's exhausting to live it, breathe it, AND talk about it.  Most of the time I would *rather* escape into my friends and families stories about their lives!

This tangent isn't where I expected to take this post, but it feels good to express these thoughts.  Thanks for listening blog-land.

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