When we were in ICU we found a pamphlet that explained what Meningitis was. That pamphlet was produced by The Meningitis Centre which at that point was in the grounds of the hospital. We contacted The Meningitis Centre once we were on the infants ward to see what they could offer us.
The coordinator of The Meningitis Centre came up to meet us and hear our story, she was lovely and very supportive. She popped back in several times throughout our stay and she offered us peer support. Peer Support was an opportunity to link up with another parent who had experienced meningitis like we had.
I thought this would be interesting to hear what someone else had been through but beyond that I don't know what I wanted because I didn't really understand what I was dealing with and couldn't see the future beyond the next few hours.
The coordinator let me know that I would be receiving a phone call from a mother who had a child who had pneumococcal meningitis at the same age as Cameron - 5 1/2 months of age. She had survived like Cameron.
I was really nervous about talking to this total stranger but at the same time very excited so I spent the morning waiting nervously. Finally the ward clerk told me I had a phone call and the hall phone was free so I could take the call now.
That phone call was amazing. I heard about another family who's story was very close to ours. We had both nearly lost our children to a deadly disease we didn't understand at the time and we had lost our precious baby to be left with a different baby. However that wasn't the most important part of the conversation.What was important was that her child was eight years older than Cameron so her story was eight years old.
Knowing that I was speaking to someone who had lived through what I was living through made a world of difference to me - she had survived. She turned the light on at the far end of the tunnel, it was a dim, distant light but it was on and I will be forever grateful to her for giving me that hope because I had almost forgotten what my real life was like because I was so absorbed in my new life.
I suspect if you were in a hospital in the same location as you live it would be different because your life would be there, tangible, reachable and you would have some physical connection. My life was so far away that it seemed like a dream and I wasn't dreaming about the future - it was gone. That phone call let me know that a future was possible and their family had survived so we could too. They had gone on to increase the size of their family, maintain their family and friendship connections and stay sane. If they could do it and find happiness and meaning in their lives, so could we.
Because of our involvement with The Meningitis Centre our families have now known each other for fifteen years and we have been in the privileged position of being able to observe how they have coped with their children and their daughters disabilities. We have learnt so much from watching them and have been incredibly grateful for the support and advice they have given us over the years.