Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

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It’s all relative

Lately I’ve noticed that quite a few people have apologised to me for things they’ve said about their children.

For example just the other day my friend who has a son with cerebral palsy apologised to me for ‘going on’ in her words about her worries for him when she realises that her son is in a better situation than Samuel. I adore her son. I adore both her children. I love hearing about them and do also worry about him and hope that her boy will thrive and overcome his obstacles.

Also recently a friend apologised for grumbling about her children who were being a pair of pickles. She was worried that it upset me because of course Sam cannot be naughty, which is one of the many things we will miss out on unfortunately. I do actually love hearing about her boys who sound like a pair of characters and hearing about their naughtiness does make me smile!

But it is all relative. What about when I moan about Sam’s horrendous nappies? The headache of teething? When I’ve had a bad night sleep because I’ve had to be up all night with him? When he’s pooed in the bath and I just don’t know what to do?

I have a lovely friend who lost her precious boy in the 38th week of her pregnancy. She never got to hold her baby, cuddle him and bring him home, do his nappies, put him in the pram and take him out and about and show him off. I get to do that. I get to do mummy things. It’s about enjoying every little moment and realising and appreciating what you’ve got and giving it a jolly good squeeze.

We are so incredibly lucky.