Wednesday, 19 October 2011

Special Saturday - The Nicest Thing Somebody has Said or Done for Me

Over the years you find that certain events or conversations stay in your conscious mind. Sometimes it is obvious why and sometimes it is not but when you take a look you can often see how those conversations or events have altered the way you think or act.

Over Cameron's life time I have developed a growing list of situations and comments which have made an impact on me and some of them have been very positive.

The oldest memory which jumps out are my two friends coming into the hospital a few weeks after Cameron had almost died, for the sole purpose of distracting me. They talked weddings and bridesmaids dresses and gave me a taste of reality again. My brain was taken away from all the drama and medical jargon and I was once again just one of the girls planning my friends wedding. They showed me that it was alright to laugh and be me and I have continued that to this day, no matter how hard life has gotten. I am so grateful for my friends. It's still important to be me.

The doctor who looked after us in ICU went on to be our consulting doctor on the ward and when life settled down afterwards. Dr Paul Carmen was the most caring and thoughtful doctor. He was always running late but that was because he was making time for everyone. When you saw him he always stopped to check how you were even if you were in the hospital to see another doctor. When we had an appointment with him his first question was always - So, how are you? He meant me, not Cameron, me. He knew that if I wasn't coping then nor was Cameron. Then he'd ask about My Marvellous Man and then finally - How is Cameron doing? He always said that if the family wasn't coping then who would look after the child. The parents were most important.

The day I heard that Dr Carmen had passed away was one of the saddest days of my life. I still expect to see him pop around a corner of the hospital and say hi. I am so grateful that he was in our lives for eight years because he made a bigger impact than I think he ever knew and he is the only doctor at the hospital who has considered me and my needs so I can care for Cameron.

When Cameron was a toddler we were visiting my Grandmother in hospital and it was a locked ward because there were dementia patients. We had to unlock and lock doors when we arrived and left. When we arrived this particular day we had to manoeuvre our way past an elderly lady who was obviously trying to work out how to leave the ward. We said hello as we quickly locked the door behind us and left her to continue her mission. When we went to leave she was still standing at the door trying to leave. As we approached, discussing how we were going to leave without her joining us, she started to chat to us and admire Cameron. Then out of this little frail, confused, old lady came an incredibly moving comment - It doesn't matter, you just love him, some people never get the chance to love a child. She then looked really sad and turned to walk away. We walked out stunned and I've never forgotten her and her wise advice.

When Cameron was in hospital initially and we were learning about Meningitis and trying to come to grips with our new life I got a phone call from another parent who's child had had Pneumococcal Meningitis at five and a half months, just like Cameron. She told me her story and explained where they were in their journey eight years later. Suddenly out of the fog of uncertainly and despair I saw a tiny light turn on because this mother had shown me that life would go on and I would survive. I am still incredibly grateful to her for that conversation and the vision she gave me that day. She made me realize I was going to leave that hospital and my life was going to go on - just differently.

Eight years ago a total stranger walked up to us in a shopping centre and asked us if Cameron's back was sore. At the time we had an unco-operative Cameron and a crying hungry baby and we weren't really in the mood for a chat but he was persistent and I am so grateful he was. He told us about his Chiropractor and how he, as an adult, used to behave like Cameron because of the pain he was in. If he had not been persistent and we had not listened we would have missed out on meeting our family angel who has changed all of our lives but most importantly Cameron's. It just goes to show that help comes sometimes when you least expect it and in the most unlikely situations and disguises.

A friend once lent me a book which someone had lent to her and it changed my life. I wish I could remember the name of the book but it was about circles of people who you interact with on a daily basis and how to best interact with them to protect yourself. At the time I had been struggling with the comments people made and trying to figure out who I should stop and take the time to explain our situation to and who I shouldn't. This book explained the different relationships and interactions you have and who you should stop and talk to and explain your situation to and who really isn't worth the time and effort because they will move on and never have any contact with you again.

From the minute I finished reading that book I changed how I talked to people. I take the time to explain things to the people who I encounter regularly, give limited information, or brief descriptions to people who come and go from our lives and let people who pass through our lives, pass on with out feeling guilt that I haven't stopped and educated them. On the flip side of that, I give talks to rooms full of  strangers regularly and will talk and share with anyone who wants to know but I no longer feel guilty if I don't stop and explain myself to the checkout girl or the woman staring at us. I am never likely to meet those people again so my explanation is not going to make a big difference to my life but stopping and trying to make them understand will stress me.

I really wish I could remember the name of that book!

Eight years ago we met our Kinesiologist and she said something that I hang onto on a daily basis. I was discussing with her how a Neurologist had told me that Cameron had only five years to regain the function of his brain after the Meningitis and now at eight years of age I was feeling despondent that I had failed him because we appeared to be getting nowhere despite everything we were trying. She stopped and looked me straight in the eye and said - "We never stop learning, till the day we die we will learn, don't ever give up, it doesn't matter how old he is he will still learn. Does it matter if he's twenty years old and learning something a toddler would know, of course not, all that matters is that he learns." I am so grateful for that conversation, it still sustains me eight years later.

I found that when days were particularly hard or even weeks I would develop a mind speak that was very negative. I would discuss in my head how hard things were and tell myself what a terrible job I was doing. When you think about it, I hung out with a non verbal baby/child so who else was there to talk to. I went to a conference for work when I was working with children in child care centres who had special needs. During this conference they challenged us to challenge our mind speak and call what we had previously thought of as problems - challenges. That little section of the lecture during a two day conference changed me for ever.

Think about it - a challenge is something to be overcome, you will over come it one way or another. A problem can seem insurmountable, you don't always solve problems, they feel negative where a challenge can feel quite positive although sometimes difficult.

By changing that one little word in my head I completely changed my outlook on life. I don't know who the presenter was that day but I'm incredibly grateful that I was sitting there listening. I started slowly with the clients I worked with, calling their problems challenges, and suddenly my large workload of problems didn't seem so bad anymore, even the most challenging of cases became a pleasure to figure out how to overcome his challenges. I'd proven the theory so I practised changing the word in my head every time I said the word - problem. It was no longer a problem it was a challenge to be overcome and that is still how I think. I don't really use the word problem in my vocabulary very much anymore.

So there you go, some simple encounters in my life that made some big impacts in how I viewed life, coped with life and tackled life.


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  1. "some people never get the chance to love a child" is one of those quotes that I guess we should all remember as the parents on special needs kids. Thanks for sharing x

  2. My thoughts exactly, blue sky. When we're going through a rough patch, I remind myself that not so long ago, I was told I wouldn't be able to have children so my little fella and all his 'challenges' is an absolute blessing. Thanks for sharing Jane x x

  3. I love the little old lady's comment, need to frame that for the tough days :)
    Glad picking dress colours using paint samples cheered you up, it's one of my best memories!

  4. I met that little old lady over 14 years ago and yet I've never forgotten her words. Like you Little Mamma, we thought we would never have children so Cameron was an absolutle blessing which I am so grateful for.

    Vicki - that night is one of my happy hospital memories. It meant so much to me.

    Thanks for your comments, I'm glad you enjoyed my post.