Tuesday, May 28, 2013

"You're always on Facebook..."

"As if."

"How do you know, unless YOU are on 'all the time'?" Unless you are stalking me?

I don't reply with any of those snarky responses, though, I often wonder if I should just shut down my page and leave people be. Then I get even more people telling me how much they love to read my posts. So, people, you are stuck with me. Because I get more out of this venture than you know. But let me try to explain.

Sometimes it would be great if I was on FB as much as people think I am, that would mean that I was doing a pretty good job avoiding my real life, the life not on FB. But I'm not. I'm really into my life, everyday. I don't post exercise updates (I barely exercise, not proud of that, just truth, though I am getting better); I don't post food updates (my meals might taste good, but it doesn't look that good, plus by the end of the school year, I am hanging by a thread with feeding my family according to the food groups and meal planning, I don't want pictorial evidence!). I do post my thoughts about teaching and I also post about my girls, my boys and my love of teaching everyone else's girls and boys.

I am on facebook because my biggest support group is a click away. My hemi-moms and dads. When Kath was diagnosed with her stroke I was reeling with so much fear, doubt and pain that I wobbled right off my orbit. Luckily, I found other moms, and a few dads, who shared their lives and understood the highs and lows. Highs like, "Kath learned how to push her hair behind both of her ears!" And lows like, "Kath fell because she has vision problems and one of her teeth turned grey."

My hemi-moms show me what the big stuff is and what not to sweat because when you live in my world, especially in the beginning of a diagnosis, it is easy to just be swirled around and not know what is Big and what is Little 'Stuff.' And that is very daunting.

My hemi-moms show me what books, articles and social media to read to guide my ever-loving research to find paths for Kath in a world that doesn't and won't slow down for her. My support group shows me what their kids can do and how maybe Kath will be able to reach for those same heights.

In my real world I have people who don't 'get it.' And while I certainly understand, I never 'got it' before I had Kath either, I have had more than one person say dismissively, "She looks normal. She's doing great. I wouldn't worry about it, she'll be fine. You worry too much."

And while they may not mean to be dismissive, their words suggest a disbelief of Kath's depth of  brain injuries, or a belief that her brain insult is being exaggerated.

As if you can see a brain injury without an MRI.

So I search out my hemi-moms on facebook after I pick the girls up from school and Kath has had yet another pee-accident. I search out my support group when I get to the girls' school early and see Kath on the playground running like the wind, laughing aloud and having fun only to get tackled by the boy she didn't see (peripheral vision damage) and eat the grass. I search out my support people when I look at Kath's amazing progress but see what NYS is expecting her and her peers to be able to do each year, and I know she won't get there and she will start to feel that 'other/outsider/not good enough' category sooner rather than later. I search out my group of parents when I realize I am so focused on Kath that I forgot about Alex and whatever she is working on (so I throw myself into volunteering for her to make up for the fact that I don't even know what she is studying most days). Or what the boys are up to...or how my husband is.

I'm on facebook so much because I have odd moments of down-time...waiting for dance class to end, waiting for piano lessons, waiting for the water to boil, waiting for my brain to resettle and follow with what I need to be doing.

I am on facebook to laugh. I am on facebook to catch up with old friends and old students. I am on facebook to see what my writer friends are doing.

I enjoy learning about the politics of my friends, but not the harsh negative personal slander of politicians on either side, but rather the intelligent discourse of varied thoughts and beliefs.

I am on facebook for ideas, craft and food. I am on facebook for book and story ideas.

I am on facebook because I don't have time to socialize in real life and I need to feel connected to other people.

But mostly you see me on facebook because some days my life is crazy, my thoughts are frightened and scattered and I am looking to connect with other parents who have children who had a stroke too so I can remember that my wobbly feeling does not have to isolate me anymore. It doesn't have to make me so scared. My social media time reminds me that other parents are with me on this journey and they will be there for Big Stuff and the Little Stuff and all the in between moments when I don't know which end is up right and which end is in not.

As if it is ever really clear.

But at least facebook lets me feel as if I am connected with other families, all the time, even if I am not really online all the time.

So, now you know.

As if it should really matter. :)


Rose said...

Veronica, I love you and you should know that you do not need to justify any thing you do to anyone. If it involves caring for your family you may feel a need, but that too is your own business. I checked that my reaction to your post was funny. It is, only because you have a wonderful happy way of making it through the days. I love what you write and share it with my family. Jack thinks you are awesome. He is right and he hardly knows you. Take care lady and don't let small people bug you with small stuff.

V. Gaboury said...

Thanks Rose!! You are one of my support group too. I have a bunch of you who may not have a hemi-child but you are 'there' and support me and sustain me. Thank you! :)