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Blogging 101-how do I do this again?

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Sometimes I wander back into this blog and check out a few of my past posts. I read some of the wonderful blogs I used to follow regularly and contemplate writing here again. 


So many things have changed in my life over the past few years. 
The teenage years are...difficult.  I feel very alone in this raising a teenage boy with WHS thing. There is no one really to answer my questions, and I spend most of my days feeling as though my son hates me. I know he doesn't, but this is tough. Way tougher than I thought it would be. 
So here I am.  Tracking my journey again. It may help others.  It may help me. But I feel as though there is so little support out there for parents who have teenagers with WHS...or any other disability for that matter.  I feel compelled to write.
So, I will eventually update this blog so it looks a bit fancier and with the times again (ha!).
But this is me. Raw. Unedited. Changed.

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How about them shoes?

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For sale: Two pair of shoes.
Come and try them.
You will probably give them back after 5 minutes. But please. Come and try them for a moment.
Here’s what you get when you step into our shoes: We have a 16 year old son who does not sleep. By this, I don’t mean, he wakes once or twice to go to the toilet or get a drink. I don’t mean he stays up all hours on his device chatting to his mates or girlfriend. By this, I mean, he literally gets up every 15 minutes to wander around the house. Sometimes he will go back to sleep for 30 minutes. Occasionally it is a full 60 minutes before he gets up again. My husband and I take it turns to redirect him back to bed or to listen as he wanders around. We listen to make sure he doesn’t go outside into the freezing cold, where, if we didn’t notice, he would probably die. We listen to make sure he doesn’t go into his younger brother’s room to wake him up . This doesn’t just happen once in a blue moon.  This happens every.single.night.  Why does this happen?…
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Dear Ryley-Celebrating 10 years

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Well here we are.
At age 10.
Sometimes it used to seem so far away.
Sometimes it felt like we would never quite get here.
But we are here.

You are tall.
You are smart.
You are as healthy as you can be given all the crap happening in your body and brain.
You amaze me, still.


10 years ago today I became a mother. While I was pregnant with you I couldn't wait to meet you. Like all expectant mothers I told you about all the things we were going to do. All the things you could be. I dreamt about the camping trips we would take, about the sports you would play, about just hanging out with (hopefully a few of them) your brothers and sisters.

But some of that wasn't how it was meant to go.

Instead, you arrived in the most traumatic of fashions. I couldn't even hold you for the first two hours of your life. I couldn't even see you for those first two hours.
I was stuck somewhere else in a hospital room, unable to move and desperate to see you.
To hold you.
To breath you in and …
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