Someday it will get easier.
There will be no more late night dashes to Emergency with Ryley in unbearable pain. There will be no working with doctors to figure out that pain and what is causing it.
There will be no more nights of no sleep.
There will be no more days with a miserable, groaning child who can't talk or even point to where the pain is.
There will be no more little man just putting up with it.

I hope that day doesn't come soon.

Ryley has been sick again with what we think (by we, I mean us and the doctor) is some kind of rotavirus gastro bug. Very nasty and it has really knocked him around. He is still not himself and has to miss school again, but he is on the mend which is a huge relief.

Having a child with a disability means you learn to just accept the things you can't change. Your child is more susceptible to any illnesses going around; that most people will never understand what it means to see your child in unexplicable pain and not be able to help. You learn that people try and compare their ill child with yours. They can't possibly understand the absolute exhaustion that goes with having no sleep. And by no sleep, I mean literally, no sleep. Everybody has different breaking points. For those that have a child with a disability, there is no such thing as a breaking point. You think you may reach it, but just as you get there, your child needs you again, and there is just no way you can walk away as they sob and reach out for your touch.

So you keep going, you nurse your child back to health...again.

So, we took the boys to Port Campbell yesterday. We all needed to get out of the house and we felt like we needed the sea air to fill our lungs and help us breathe again.
There is something so calming about the ocean. Although Ryley struggled, he did manage to enjoy the seagulls.
He has lost a lot of weight again and is still pretty sad. But hopefully he will be back at school again this week and we start counting the days until our holiday up the coast.


  1. thinking of you and loving Ryley from afar!

  2. So sorry to hear Ryley has been sick. I think us SN families should be exempt from 'regular' childhood illnesses - for some reason they are the ones that really tip me over the edge.

    I hope you get some sleep and all feel better soon.

  3. Anna, I'm so sorry that Ryley has been sick. I can't begin to imagine how exhausted you must be right now. Sending lots of love and hoping your little man is feeling better soon and you can all get some well deserved rest !


  4. Thanks so much Lauren, Alison & Caroline.
    Both the boys are actually asleep, so fingers crossed they manage to sleep a bit tonight.

    Alison- I totally agree about us being exempt from the regular illnesses. How good would that be!


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