Thursday, August 18, 2011

Why I left the CHD community on Facebook.

It's no surprise that I am very wishy-washy when it comes to Facebook. I've written about this about a gazillion times in the past few months and I'm even annoyed with myself. Let's face it: if you're so wishy-washy with something you should probably just leave it alone. You should just walk away and not even feel bad. Because life goes on and life is not actually ruled by how well you use something like Facebook. Unless you're doing really bad things on there and you are definitely not using it for the right reasons.

In my case, I've always tried to use it for the right reasons. I started out only adding close friends, friends through friends.. pretty much just the people who I met and know in real life. That was it's purpose for me: to keep in touch with people who I thought would want to keep in touch with me and my family. Then I started seeking out a whole bunch of people connected to the Congenital Heart Defect community. Lots of moms, a few dads, but mostly moms. I was also really lucky to become connected to actual survivors. That, for me was what I needed to see and hear about.. survivors living their lives and sharing how. I immediately gravitated towards that because with each survivor meant bigger possibilities for Natalie.
That can be great.. but then again, it can be damaging when you depend on a social networking site to tell you how you think you're young daughter's heart condition will play out. Even though you promise yourself you won't do that.. you'll separate her situation from the rest.. it becomes impossible.

I ended up spending more time trying to find time to pray and think of all of these families than spending time with my own survivor. My own flesh and blood. And I can't forget that there is a 5 year old who needs just as much love and attention.. and let's also not forget there's a husband there too!

I started to lose myself into Facebook. I became totally consumed with who had what surgery, how they did, why they passed away, who else passed away, and why. I became completely consumed with thinking about these families.. wanting these moms and dads to like me.. "hey like me like me I have a survivor TOOOO".
But could I remember all of their children's names who were CHD survivors or angels? Nope. Sadly, only some of them. Did they remember who Natalie was? Sometimes. Did I spend too much time talking about these families in my own real world outside of Facebook? Yep. Did it start to create even more damage to my already-overly-stressed-out marriage? Yep, again. And as you already know, that has it's own stresses without social networking.

The day that I went on my second deleting rampage with Facebook was when I discovered that a new "buddy" was the talk of some discussion about being "crazy", "strange" and a few other not-so-nice words. And I already have a huge problem with trusting people so this was like adding fuel to that fire. I realized that having almost 150 or so CHD contacts was just an open door for more drama. A door that needed to be closed, but I have enough crazies in my real life.

So I whittled my list down to about 80 people.. and as horrible as it felt to click "delete" for each little default picture that I came across, it felt slightly freeing. Freeing because I needed out. I needed to just focus on my own CHD child and no one else's child. It is totally selfish and I'm okay with that. But I spend most of time and pretty much my entire life being self-less that I had to do this. For a change, Dawn had to be a little selfish.. I'm sure.. I'm positive that it was a good thing in the long run.
Did anyone really care? Probably not.. because I am just another Facebook user. Should anyone care? Not at all.. because if I deleted you it was only because you were connected to a community that I need to separate from for a while. No ill feelings whatsoever. At least on my side. I actually miss a few people.. really bad. But I know that what I did was right for my sanity.. for my children.. for my husband.. for my marriage.

In turn, I want to spend (and have been spending) more time with this almost-6 year old blog. I am switching gears and doing something that has been more consistent and concrete in my life. There is life beyond CHD in my household and there are pre-CHD days that I love to look back on and post-CHD days that am so looking forward to. I am so fortunate that some contacts completely understood my "escape" from the Facebook CHD community. It's a really stressful community as would be any illness-related community anywhere.. not just Facebook. It is full of some enormously giving and caring people.


Hope's Blog said...

No need to apologize or can be overwhelming. I just hope you continue to share through your blog. It always seems that after heart kids turn 5 we don't get as many updates...and that is sad for me. I want to know how Natalie is doing and catch a glimpse into 'normal'. It is something I have for a time (until the Fontan) and hopefully for many years after.

So...I thank you for continuing to share on your blog. I will always be checking on you guys here!

Stefenie said...

No need to apolgize. There is drama all over facebook, not just the heart community. I have my days too with facebook.

You need to do what is best for you and your family. I tell heart parents that all the time. Your family comes first and above everything else.