Pure White

Mummy – Can you please go and pick up the mixing bowl for me.

Nathan – I can’t right now. I’m busy.

Mummy – You’re busy. Doing what?

Nathan – Doing nothing.

Mummy – That must be really hard work.

Nathan – Oh, it is.

We’re using this blog pretty much to journal as we go along, so sorry for the unnecessary detail and the lack of clarity of thoughts.

The last few days have been really hard. Nathan has hours of the day where he is very needy. He won’t touch the floor or sit on a chair or lie on the bed. He needs someone to be holding him, and holding him up off the scary things all the time. Which causes Elisha to become very jealous and want the same attention. He doesn’t understand why Nathan gets to sit on someone’s lap for breakfast and he doesn’t. So this morning I had Nathan and Tim had Elisha. Barely anything around here is getting done between them.

It’s much the same as some parents deal with everyday with their autistic or impaired children, and makes me grateful in a new way for the development of the kids I have right now. It really is hard work. Feels a bit like having a needy newborn that I didn’t expect. 🙂

He did pretty well yesterday, mainly just glimpses of fear which worsened as he got tired. Late yesterday afternoon I noticed his temperature was heading up, and his paranoia hit in then. There’s a clear difference between when he’s just needing support and protection and when he’s ‘paranoid.’ We went out onto the deck, somewhere he feels safer, and read through Psalm 91 from the kids bible which talks about protection and safety in ways that he understood very well. There were interruptions of squirming and cries, but he asked for it again a little while later.

The problem with his paranoia growing as he gets more tired means that bedtime is much harder and he will only fall asleep on someone. That’s been me for the last few afternoon naps and evenings. Which is extremely uncomfortable and makes for a terrible night of sleep. Last night in particular with his fever he was very restless, and kept putting his knees on my tummy which also feels like it has doubled in size in the last three or four days.

Fevers up near 39 degrees again this afternoon, so we’ve been dosing him up on ibuprofen, which has seemed to work more effectively than paracetamol in the last few days. This time though there hasn’t been any accompanying paranoia or talk of crocodiles, so we might be getting somewhere. Even though they didn’t find anything, it feels like he is still fighting something off.

I’ve been thinking about the spiritual element to this, which is something that’s been in my mind the whole time.

There are factors about it which don’t make any more sense to me than any of the other explanations we could have. That the things he was seeing were everywhere, including Tim and Alan and I. That our prayers seemed to have little effect, either in settling them or increasing them as the things he saw got more violent. That I didn’t pick up or feel anything for the first few hours, when the spiritual atmosphere of things is something I’m normally really sensitive to.  I’m not saying that it couldn’t have been spiritual to start off with.  There are lots of things that I don’t understand.

That said, after we’d been in the hospital for a few hours, every time he would start thrashing and freaking out, my fear and tension levels would spike instantly, in a way that was different to when we had first arrived and the hallucinations had been worse. It’s almost like the initial hallucinations could have been caused by something different, but then it became something to keep him in fear and to attack his little soul.

Some friends of ours wrote to us saying that they believed that what had been intended for harm would be used for good. It’s already easy to see how Nathan has responded to it positively. The first night that we were home Tim and I were both lying in bed with him and he asked us to pray. So we spent a while with him praying about lots of different things and he was very involved. Today Tim and Sian moved out, so a new room opened up. Nathan walked in, announced that it was the church and we needed music. We grabbed their instruments box and sat in the room for a while making music while Nathan made up songs. About Jesus and his family and daddy.

I believe that this will be part of moulding a kid who lives fearlessly and knows who he belongs to and the foundation that he stands upon.

So even though boys ended up in our bed last night again, we had a much better sleep than the night before. We even slept till almost 7am!

Nathan is acting more normal today. While still hesitant about doing some things first thing after he woke up, he’s now walking about on the floor, and playing outside. He still wanted to sit on Sara’s lap for breakfast, and didn’t want to walk initially. Now it’s more of a fearfulness than a paranoia.

And then he saw a ball under the house that he wanted and he put his shoes on and went under the house to fetch the ball! That’s our normal Nathan! He’s still clingy, but doing much better. We’ll see how this afternoon goes, as yesterday morning started well but went down hill. We’re thinking that as he gets tired (and I’m sure he’s both physically and emotionally exhausted from Saturday too) he gets more fearful, which is a normal reaction for kids when tired. Hopefully we can get an afternoon sleep to happen and that’ll help with bed time tonight.

Keep praying for a speedy recovery and that this will all fade away to just a faint memory.

Thanks for your continued support.

Nathan getting the ball from under the house

We are home, but things aren’t normal. We don’t have a diagnosis, all they’ve managed to do is rule some things out. All they can suggest for now is we see how he goes and see if it continues to get better or not.

And yes, he has gotten better. He’s no longer hysterical and thrashing around screaming that Crocodiles are biting him and the mozzies are biting him. But he’s still super paranoid of them, and thinks they are everywhere. It fluctuates. This morning when he got up, he was paranoid but when Sara, Eli and Alan arrived, we were able to encourage him to get down on to the floor and play, and before he wouldn’t let his feet touch the ground. He then proceeded to spend most of the morning playing in the play room, walking around, playing in the toy house and the Thomas train. But towards lunch time he had started avoiding the floor again, and looking at people suspiciously like they have things crawling over their shirts. But then this afternoon driving home we had to pull over because he was freaking out, and then at home he wouldn’t let his feet touch the ground and was asking what was on everything. Now Sara’s trying to put him to bed, I already tried, and he won’t lie on the bed, he has to lie on top of one of us so he doesn’t touch the bed.

It’s like Nathan is there, but he isn’t. He’s still bright and smart, with a great memory and able to think. He was asking a Why question in the car today, and we said he had to stop asking that question, he thought for a moment and then rephrased what he was saying so it wasn’t a question anymore. (He did that the other night before all this too, he kept asking for a drink at bed time after he’d already had a decent drink, we told him to stop asking for a drink, so instead he asked for his cup with some water in it.) He asked to go to the toilet, so we stopped at the Church office as it was the closest convenient toilets, we walked in and he said something like, “oh, I know this place, we came here 4 months ago”. All that brain is in there like normal, and working. But at the same time, he’s not there, he’s been replaced by a baby, who keeps asking a question, getting an answer, asking a few more questions and coming back to the first question again. His speech is almost baby like at times. And at other times is exactly like he used to be. This isn’t my boy that we had 2 days ago, this is a very different kid, who’s difficult in a totally bizarre way. The remote possibility that we won’t get our boy back scares us.

Talking to a friend of ours who is a psychologist, it was encouraging to think about it like a Trauma that’s occurred, and this is now the recover phase. That he probably will forget about it and return to normal, but that this is how he’s recovering from that trauma, needing a safe environment to recover. That later in life he’ll probably only remember it like a dream, and that he won’t remember the scariness of it, or the intense fear.

We are exhausted, physically and emotionally. We are physically in pain from Nathan clawing his way on to us and the strength he has and is using without realising how he’s hurting the people around him. Just trying to get him to sleep last night on me resulted in many knee in groin injuries for me, just because he’s trying to get his whole body on top of mine so that none of his body is touching the bed. He pushes his head hard into your chest or shoulder, it’s not just gently resting, it’s pushed in terror. He has no thoughts to the person he’s using to get away from things, because he’s in so much fear, and as a result he forgets that Sara is pregnant and he forgets to be gentle with her belly. He’s normally pretty good at being gentle and considerate of it.

Please keep praying for a speedy recovery, and strength and wisdom for us to best care for him. Pray that our interrupted sleep still gives us the energy and patience we need to deal with him. Pray that Elisha has some understanding as he’s currently struggling with the amount of attention Nathan is demanding, even though we try to give Elisha lots of attention too. Pray for those around us supporting us, that they get the rest they need, and the wisdom of how to best support us, and much blessing poured out on them as they have blessed us. Pray that this goes away totally, and never recurs, that it was a random once off thing with no lasting effects.

Thanks for all the prayers and support so far, we’ve needed them.