Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

I post too much.

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I post too much.

I post too much, I share too much, I say too much, and I write TOO MUCH.

I get it. You’re sick of reading it. You’re sick of hearing it. You say my posts are OTT (over the top). I know you see my posts and you roll your eyes as you scroll by. I know you talk about me with mutual friends about how much I post, about how much I share. I know you judge me. I know you’re bored of me. I know you’re tired of me.

Hell, even I’M tired of ME!

You see, most days I have absolutely no adult conversation. None. I talk with my kids and they tell me about their day. But they are kids. There are things about adult conversation that I don’t get from my kids. I can’t really talk about my day, not that there’s much to tell anyway. Between them going to school and then coming home, I don’t talk to anyone. So I have all this crap going on in my life, and I have no one to talk to about it. Not even my husband. He and I have separate bedrooms, and separate TV rooms. And I can’t talk to him because a) he doesn’t listen, and b) he doesn’t care. Besides, the rugby/golf/league/soccer/darts/synchronised swimming is usually on.

So I post. I post because I am bored. I post because I am lonely. But mostly I post because I miss having someone to talk to.

Last week was World Duchenne Awareness Day. It followed on from the ten year anniversary of James’s diagnosis. It was a pretty tough week, as it always is. This time every year is tough. This time every year I post about how hard it is. And this time every year I receive zero calls asking if I’m okay. Oh, I get messages from some friends who know I’m finding it hard, those friends who worry about me. And their messages are always appreciated. Always. Thank you so much to those that messaged me this year. But there are people who see my posts, roll their eyes, and think “There she goes again, I wish she’d shut up!”

I wish I’d shut up. I wish I didn’t have this period in September that affected me so much. But it does. And I’m not going to apologise. I post because I WISH those close to me would care enough to pick up the phone or text me and actually ask if I’m okay, or let me know they are thinking about me. I wish they would do that, instead of talking about how I post way too much, and how OTT I am.

I’m OTT because I’m overwhelmed. I’m OTT because I have no one else to talk to. I’m OTT because I have to get it all out before I explode. I don’t need anyone to judge me, I need them to support me.

We spent 10 years overseas. I planned our wedding from Tokyo. All by myself. I went to all my prenatal appointments and had invasive testing. All by myself. I gave birth to four magnificent babies and learned how to be a mother. All by myself. I had four miscarriages. All by myself. I sat in a doctor’s office with my 2-year old son whilst a smiling doctor delivered him a death sentence. All by myself. Julian and I lived through the aftermath of that diagnosis. Together but alone. We have lost our home, our life has fallen apart, we have watched our beautiful boy deteriorate. And we have weathered it. Together but alone.

And so I post. Because I feel so alone.

I don’t have the luxury of family nearby, offering up their services to give us a break. I don’t have a shoulder to cry on, I don’t have a group of girls I can hang out with and bitch about the kids or my husband or life in general. I don’t have a group of friends who take me out to cheer me up. And that’s no one’s fault but my own.

And so I post. In the hope that someone will comment. In the hope that someone will say something to make me feel better. In the hope that I won’t feel so alone. In the hope that someone might even say “I know how you feel and I’m here for you”.

I post. And it’s my Facebook page. So please, instead of talking about me and judging me, instead of rolling your eyes and scrolling past, you might just take the time to ask if I’m okay.

Because most of the time, that’s all I need. To know I’m not alone in all of this.

  • Jeannette de Snaijer-Roos - Wow. I think you are very brave to write this all down. Because I think we all feel this, deep down inside, but we are too scared to let it out. Our son is 28 now, 21 years since we had the diagnosis. You know what it is: It takes too long. They all have seen it, done that, bla bla bla. He has been in the hospital, lots of times. They see you adjust your house for the 3 or 4th time, battling to get all the appliances you need for him. His 5th wheelchair…not interesting anymore. That’s the truth. People can only focus that long and that much (not long and not much) so it’s difficult. They don’t understand you can’t get out of your house because he has a trachea tube, and you need to be with him every minute. You are not free to go where you want/like. So I have given up, I have a lot of friends on facebook with DMD children. Some good friends still around, some familymembers. I just let it go….it’s not possible to live otherwise, it’s hard enough as it is. But you are brave, I must admit.ReplyCancel

  • Carly - Sharyn, I NEVER roll my eyes at any of your posts, and anyone who does should be damn well ashamed of themselves. Whether you post or not I think about you all every single day, literally every day. I’m not sure if I have said it to you before, but this atomic bomb of Duchenne that has dropped on you really has altered my outlook. I remember receiving that email you sent telling us of the diagnosis – I was sitting at work and just went cold. Then a year later when I became a mother to my own little boy it hit me again – what, just WHAT would I do if it was my son? I can only hope I would have the same strength and determination that you have to get me through the days, that love that just keeps you going because really you have no other choice. Every time something gets me down or I hear myself moaning I think of you and it is such a massive reminder to put things into perspective. I have hesitated in saying this to you as it sounds like I am making things about me – how thankful I am that MY boys are fine, how lucky I am that I don’t have to go through what YOU are. I truly hope that it doesn’t come across this way. What James and you all are going through (which I doubt I can even come close to imagining) has become my yardstick for what I judge the gravity of things on (please forgive the clumsiness of this, I’m finding it difficult to find the right words). Maybe it’s because you and Julian were the first friends my age who had become parents, and I was lucky enough to share some of those early joyous days of ecstatic parenthood with you, that it shook me so hard. I had never met two people so utterly smitten and devoted to their child as the both of you – none of my friends had become parents yet. Anyway, what I am trying to say (badly), is that you are NOT alone, you are loved and you are admired more than you will ever know. Your post has been a reminder that you are not telepathic, and that you need more than just a comment on your posts. Please know that you are constantly in my thoughts and I just wish I could change everything for you. Keep posting, let it all out if you can and if people don’t like it, they can scroll on, stroll on and do one!!! xxxxReplyCancel

  • Lis - You’re most certainly not alone in feeling as you do. Could’ve written that myself. XReplyCancel

  • Sascha - Oh Sharyn my heart breaks reading this.. I can’t imagine the pain. The constant grief. I don’t know the answer. I guess people go to Facebook to escape from their own shitty lives looking to escape from their own reality. Life isn’t all unicorns and rainbows and I bloody wish it was sometimes. All I can say is you have to start doing something for you.. a book club, dinner at a restaurant, organising coffee with a girlfriend. Just try and escape for an hour by doing something for you. I’m here for a chat whenever you need. You are a gorgeous girl… xxxxxReplyCancel

  • mindy b. - Sharyn, you have my love. I wish I could be closer – to be a shoulder you could cry on, to be a friendly ear to listen. I can promise you that I’ve never rolled my eyes. I have such respect for you, and I send my love halfway across the world. You may not have the friends nearby that you long for, but you’ve got a network across the world, and we love you. XOXOReplyCancel

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