The social network

Something I have been struggling with lately is whether or not I want to share our son's diagnosis with our social network.  Our closest friends and family obviously are aware of what we have been through and what is going on, but we have never "posted it."  I guess you could say we are still in the PWS closet.  When we were first in the hospital and getting tests done, posting it on Facebook was the last thing on my mind.  I barely managed to announce Levi's birth to my FB world, let alone share the turmoil of what we were going through with former high school classmates, random co-workers, and old college friends.  Most people, though I enjoy keeping in touch with them, weren't on the "need to know" list.  Not to mention, I didn't want anyone making comments like, "we're praying for you," or "you're so strong," or any of the other cliche comments you hear when someone is dealing with a tough situation.  It was hard enough to hear those comments from our closest friends who I know really meant it.  I think I was in hard core denial, and putting it out there like that would have made it real, would have drove the knife I felt in my heart that much deeper.  So I never went there.  I skated by one of the hardest things I've ever been through in my life without so much as a mention.  And now I am considering coming out.

It may seem trivial to some but it's a big deal to me.  It's a very personal thing to share and I'm a pretty private person when it comes to most things.  (I haven't even told anyone about this blog!)  Putting it out there makes me vulnerable.  It makes me subject to judgement or pity or gossip.  Even worse, it makes Levi subject to judgement or pity or gossip.  He may be viewed through different eyes once someone "knows."  Right now he is just a cute innocent little baby who has the future wide open to him just like anyone else - and that's how he deserves for it to stay.  Once you share the diagnosis, people may think differently, they may look for the signs and symptoms of his condition.  It's human nature.  They may make comments to me about how "he looks normal".  (Seriously, someone said that to me - gee, thanks, that really makes me feel better).  I know that those comments come from a place of good intention, but it still hurts to hear.  There's really no "right" thing to say.  It's just an overall awkward situation.

I know I am just being an overprotective mama bear.  And I will remain in the closet if it continues to make sense.  But my life has become so much about Levi and his condition that it's hard NOT to mention it anymore.  Not mentioning it is to deny awareness that I could be spreading, fundraising donations that I could solicit, or even the possibility that someone I know could share a story about their own struggle or situation.  The idea of talking about it and sharing it though... it feels overwhelming for some reason.  I want to keep living as normal of a life as I can.  We have a new normal now and I have gotten used to it. And I don't want my entire life to revolve around PWS.  I've recently joined an FB group of moms to babies with PWS from the past year or so.  It's a great group and I am so happy to be a part of it and find it to be a great resource and source of comfort.  However, it does keep PWS at the forefront of your mind.  It changes Facebook for me.  Instead of being all about fun silly things and keeping up with old friends, it's a constant stream of PWS stuff.  I see all the other mothers posting about their children and yet my lips are sealed because Facebook wasn't where I wanted that stuff.  But now, there it is, in my face...and it makes me wonder, should I too, share about my son and his challenges?

Once it's out there, there's no turning back.  I met a local mother last week who has a 4 year old little girl with PWS.  She was awesome.  She said to keep living your life.  Don't make it such a big deal.  It's a part of your life but it's not your life.  You know?  She said she actually doesn't go on FB much anymore because so many people in the community post nothing but things about PWS, and she would rather live "her" life than be inundated and overwhelmed by everything she sees going on with others... I can definitely see where she's coming from.  However, I also enjoy connecting with others and see the benefit in sharing.  So I continue to debate this topic with myself: to share, or not to share?  Am I brave enough?  Am I making it too big of a deal?