Wednesday, 21 September 2011

Why Cameron is No Ordinary Kid - Part 46

I don't recall exactly how long I was in room three before we had to move again but it wasn't long. This time we moved to room one. Next stop the front door.

I was now facing a brick wall which was really strange and I was at the far end of the corridor so I had no idea what was going on and felt extremely isolated. You could hear yourself think down this end of my new world. That wasn't such a good thing because now I had no distractions and the reality of my new life really hit hard.

Having learnt from the previous move I made this transition even quicker and was sitting in my new room completely organized in no time. Again Cameron slept through the whole thing because he still had his days and nights back to front.

Moving rooms can be amusing because staff come to find you and you've disappeared. You watch them looking really puzzled and then consulting the main board to figure out where you've gone. The flip side of that is sitting in your room and having a total stranger waltz in full of confidence and then suddenly stop and stare at you quizzically because you're the wrong person.

Our new room echoed more than the others and this made my nights worse than ever before. Cameron became even more agitated at night and because we were now down at the end of the corridor the staff didn't seem to notice that I wasn't getting any sleep. We also had fewer observations throughout the day because his general health had improved and he was no longer in danger of dying.

Every night, night after night, Cameron refused to sleep or lay quietly whilst I tried to sleep. I would try putting him into bed with me and he would scream in my ear. He screamed if I stood by him and tried to comfort him in his cot. I was so tired that I tried to sleep standing up with my head resting on the rails of the cot but of course that didn't work. We tried sitting in chairs in various locations around the room with lights on and lights off. I would hold him pacing the room and willing him to understand that I was trying to comfort him but it just didn't work.

I would start off with a calm, soothing voice and all the sympathy in the world but the sound of his cry echoing around the room drove me slowly into a dark place. I couldn't handle it and I had to have the door closed because his cry would wake up the other babies. Eventually after I had tried everything  I would place him in his pram for his own safety because if I was holding him I feared what I would do and I could feel my grip tightening as I became more and more desperate for sleep. In my desperation I even lectured him because there was nobody else for me to talk to and I'd lost my grip on reality.

Sometimes I would contemplate various ways to make him quiet and I am not proud of those thoughts but I am proud of myself for putting him down and turning my back because that was the only way both of us were going to survive.

I just wanted/needed sleep and I wanted/needed peace and quiet. My mind kept flashing back to that other baby who had come into the ward with the same cry as Cameron because his mother had shaken him. My heart started to weep for her because I now knew how easy it would be for me to be that mother. That was when I learnt the lesson to never ever judge anybody, no matter how bad it looks like they've behaved. You do not know the circumstances.

As this nightly trauma continued I also was feeling deeply confused because I was so grateful to still have Cameron alive and I loved him so much but I wanted him to stop crying, I didn't love his behaviour. During the day I would cuddle and hug him and at night we would glare at each other from a safe distance.

Now many years down the track I know that Cameron was suffering from horrendous headaches and the world had become a hugely confusing place for Cameron but nobody explained that to me in fact everybody treated him like a normal baby and I felt like an incompetent mother. People behaved like this was how Cameron always behaved but this wasn't my Cameron, this wasn't my baby, he was nothing like my baby and the reality that my baby was gone hit harder than ever.


  1. Big hugs on such a difficult post to write, well done brilliant post xxx

  2. Firstly well done for being so brave and honest. You are far from incompetent! People (myself included, many times) who have to deal with a screaming child combined with sleep deprivation go more than a little crazy. I remember walking (no make that storming) out of the house in the middle of the night to sit in the cold and dark just to get away from incessent screaming. You didn't have this option and had to deal with all the other stress and grief on top of it. Don't you dare beat yourself up, you did brilliantly to get through this dark, lonely time. (Now going work all weepy and soggy!) Love always Vickixxxxxxxxx

  3. When my first son was diagnosed with autism, I felt like he was someone unknown. That the baby I knew had been taken from me. Now I know that I was the delusional one, that he was the same person he had been all along. However, it was years before the anger and fear of the future was under control. I am not proud of the person I was through much of that. When we think others are coping better than we are, it is only because we don't know what goes on inside their minds and behind closed doors.

  4. Vicki - I'm weepy because you've gone to work weepy. We must stop doing this to each other.
    It's all relative, in my sane head I know that. I find it amazing how I'd buried my emotions about it, I guess because life got so busy once we left the hospital I didn't have time to think and reflect.
    I've never mentioned any of this in my talks which I now realize is kind of relevant for nurses to hear so I shall have to make some additions.
    I'm sorry you were sitting in the cold and dark - wish it'd been there to sit with you.
    Huge hug and love.

  5. That's so true Spectrummom. We have no idea how someone else is coping or how they get themselves through each day. We just see the facade and if it looks better than we feel we presume they are coping better.
    Everything is relevant to our own experiences and we can only learn as our journey proceeds. Wouldn't you love to be able to cope with these stressful situations now with all the knowledge and wisdom you have built up because of them?
    Actually - answering my own question - no I wouldn't like to cope with what I went through now, I'd rather it just never, ever happened but such is life.