Non-verbal frustration

I wish Ryley could talk.
I wish Ryley could use an AAC device to tell me what is wrong, or what he wants, or just to tell me about his day.
I wish Ryley wouldn't look at me with his sad eyes as he tries to communicate where it hurts.
I wish I was better at interpreting his body language.
I wish, I wish, I wish.

Nothing is harder as a parent than watching your child in pain.
Nothing is harder as a parent than not being able to take that pain away.

No matter how in tune with Ryley I am, I sometimes just simply can't figure out where it hurts.
All I know is, that somewhere his body is causing him enough discomfort to not want to walk.
If he is still having trouble tomorrow we will have to take him to the hospital and order I dunno, a full body x-ray or something.
The problem is that I have no idea what has happened.
I can only assume he has lost his balance (he loses his balance constantly now) and has fallen onto something, or twisted a muscle or...???

As much as I get sick of Braeden's constant chatter. I am so incredibly grateful that he can talk, that he can tell me exactly where it hurts and how it happened.

Oh and to add to the mix, his seizures are worse than ever. We have just increased the ratio on the diet to 4:1 which is the maximum the diet can go to. I only hope his body is just adjusting and the seizures start to lessen. He is also incredibly tired at the moment.
I just hate that I can't do anything more than hold him tight and tell him it will be ok.
He must get so sick of that.


  1. I am so sorry Anna. I am sending love and support your way.

    1. Thanks Hilary, he seems better today which is a relief.

  2. I wish all of those things for you too mate....(and for me!)
    I hope you find out what's hurting...poor little guy...and you!
    Sending ya'll loads of love.

    1. It is the only thing I really ever wish for with Ryley. Just some words to tell me what is going on. It is so bloody hard to sit back and not be able to help. He is better today though, so I am so so glad.

  3. Oh Anna. I hope that today you discovered what is wrong with Ryley and how to help him.

    I'm sure he Appreciates it when he hold him and tell him it will be okay.

    1. Thanks E. We think we did figure it out. We think it was a 'corky' in his thigh plus a bit of stiffness in his lower back. Poor kid. He was so miserable last night and vomited from sheer exhaustion and discomfort. Scares the hell out of me sometimes that kid! Think he is improving again though. Thank goodness!


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