How about them shoes?

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? Because just recently the sleep medication he was on was discontinued here in Australia. We are in the process of trialling other meds, other strategies, sensory products. The bottom line is, nothing has worked. So now, we care for Ryley around the clock, with only occasional respite. This means, we feed him, change his nappy (yes, at 16 years old, he still is not toilet trained) and support him with everything. Because he is not getting enough sleep, his seizure activity has increased. He is more irritable than usual, and his behaviour has worsened. He constantly pushes, hits and kicks us.

Both my husband and I work. We have worked out a system where we take it in turns to stay up with Ryley. But, because we are so used to being on high alert through the night, most of the time we are both still awake. We could pay someone to look after Ryley through night at around $55 per hour, so that is around $650 per night for someone to do the same as what we do. Wish we could get paid to do that. Unfortunately, we don’t have that kind of money, and his NDIS package won’t quite cover it.

So what is the point of this post?

I am disheartened.

My husband phoned me to tell me how a colleague had made a ‘joke’ about how little he seems to be at work. Everyone laughed and thought it was hilarious.

It is not hilarious.

If only they knew what my husband has to do when he arrives home, or has to leave early. It is no wonder that the mental health of men is so poor. Perhaps if that workmate asked him if he was ok. Perhaps if he started a conversation about how he had noticed that he had been leaving early, or didn’t seem to be around much, and if everything was ok at home. 

Sigh. 

The bottom line is that we don’t often talk about how tough it is for us. We don’t moan and complain. We simply get on with it as best we can. We have a few wonderful friends who support us, and for them we are grateful. This is not an easy road. And as Ryley gets older, the challenges are greater. There are times when we sit in utter despair and we simply don’t know how to keep going.

But we do.

Because we have to.

We love Ryley with all our heart, but the reality is that we are battling things that no one knows about. It is not just my husband and I, it is Braeden too. 

Please be kind to others. You have no idea what they might be going through. Off hand ‘jokes’ can be destructive and upsetting.

My husband is not as emotionally reactive as I am right now, but I know that deep down, it hurts. 

Just be kind. 

Please just be kind.