Tuesday, 28 June 2011

Why Cameron is No Ordinary Kid - Part 27

Now that Cameron was free of monitors, machines and electricity, Cameron could have a bath. Cameron had loved baths and we hoped that he would relax and enjoy himself in the water  however it was not to be. The water seemed to annoy him and distress him. He would cry and just generally be sad, not exactly how it used to be.

Our room started to change. Cameron still slept a lot and when he did our room was peaceful but when Cameron wasn't sleeping he wasn't happy and he cried a lot. Our visitors didn't tend to see this because he was sleeping during the day and waking during the night. His body clock seemed to have completely reset itself back to front.

We had more doctors coming in to look at Cameron including a Neurologist who was a very impressive man, the type of man who demanded your attention when he was in the room and spoke very authoritatively.

One day he swept in with his entourage trailing behind him. I had visitors so the room became quite crowded. He looked at Cameron and then mumbled a whole lot of stuff that I didn't have a chance of understanding.

By this stage I was completely confused because Cameron seemed to have less abilities than when he was born and nobody was acknowledging my observation. I braved up and told this doctor that Cameron appeared to be like a new born but worse and he agreed but didn't give me an explanation. Instead he told me that we had five years.

"You have five years to reteach his brain and after that it will be too late."

I have never forgotten those words. I hung onto those words for five years. At the time five years seemed like a long time. I had a feeling of panic and urgency whilst having no idea what to do. However, he did give us a focus.

I had photos of Cameron taken the week before he got sick on my window above my bed. I wanted to hang onto my memories but I also wanted people to know what he was really like. This baby was not our baby, this was not normal, this was not Cameron. Apart from the usual baby things, like not letting me get a full nights sleep Cameron was a very placid and happy baby. He didn't even cry when he was hungry.

One day my mother told our doctor that she could see pain in Cameron's eyes and he told her she was wrong because the Meningitis was now gone. The infection might have been gone but the pain was there and that was clearly visible in Cameron's face.

I wish I knew then what I know now. Adults report excruciating headaches for about a year after surviving Meningitis and in hindsight Cameron must have been in a lot of pain, no wonder he didn't want to open his eyes in the daylight.


  1. So much I didn't know, I wish I had been able to be closer :( and come and see you more. (PS Crying again)Vxxxxxxxxxx

  2. I know Vicki but you are closer now.

    I know Lee, sometimes it amazes me that this is my story. I think there is still a little bit of me tucked away that thinks I am going to wake up from this and be back at the beginning again.

  3. How long did it take before you accepted that Cameron was never going to be the same as he was before the meningitis, Jane? It must have been so difficult for you. I can't send you enough hugs, I really can't xx

  4. Thank you Sharon. I can feel those hugs coming across the oceans.

    That is such a good question. I think I accepted our new reality by the time Cameron had fully woken up and all the tests had been run. It didn't take me long but the grieving process was longer.