Thursday, 25 April 2013

It Makes You Think

17 years ago we were living in the infant ward and watching a sleeping baby who wasn't waking up. Cameron had made it out of ICU but was still not expected to survive by the hospital staff - we had different thoughts. Call it denial or call it hope we hadn't given up, every day was filled with optimism for the future, whatever that may now mean.

17 years later I sit here typing watching my son watching The Wiggles on TV whilst flipping through a magazine with one hand and interacting with a talking app on his ipad with the other hand. He is loudly interacting with the talking app in sounds that kind of resemble words but aren't really whilst not taking his eyes off The Wiggles. He can multi task.

It has been 17 long and exhausting years of love, therapy, school, appointments, doctors, hospital dashes, ambulances, cuddles, medications, alternative practitioners, supplements, friends, family and hope. It hasn't stopped for a single minute because that is what being parents means - the love never stops and you will do whatever it takes for your child to help them along their journey to reach their life goals.

People have told me over the years that I am incredible, amazing, inspirational. That they couldn't do it and they don't know how I do it. But the truth is I am no different to everyone else it's just that my life journey took an unexpected turn and I am doing things a little differently to everyone else in my life. You would do the same for your child.

Having lived in this different world for a while now I have realized that everyone copes differently with their change in course and I think that is what people see more than super human parenting, Some parents fall apart emotionally at the beginning and need help to get started. Others hold it all together for a really long time and then fall apart and need help to pick themselves up again. Some appear to never fall apart but don't believe them, they are falling apart when nobody is watching. And some people fall apart on a regular basis and need someone to help them along their journey permanently..

Some parents drink or smoke, some eat, some run, some shop, some work tirelessly for charities, some fill their days with everything and anything. This is how they cope. Some run away but I don't think they do that lightly. Marriages fall apart, friends are lost and families become isolated

But this is all part of the journey. When you find yourself on this new path everything you knew and believed is challenged. Your plans are halted and challenged. You are forced to step back and think about your life, your goals, your dreams, your beliefs and your priorities. You spend hours questioning the world, the universe and everything in it. You question your place in the scheme of things and why you do what you do. You search for meaning and signs. You change as a person and sometimes the people around you aren't able to join you for the ride.

Some people get very angry and people only see the anger and not the reason behind it. Some people drink a lot and people only see the the empty bottles not the reason their empty. Some people let themselves go or change their appearance and people don't see the reason why, only that they aren't them anymore. It's understandable that those around us get confused, we have changed and we have new insights into our lives that are difficult to explain. We are on a different life journey and we can't return to the old one.

I know I've changed and I'm still changing and it's all because of Cameron. I have questioned almost every belief I had and almost everything in my life. I look at people differently and look at relationships differently. I value life differently and no longer value things like I used to. I am far from the path I was headed for and I don't think I'm sad about that. I wish Cameron hadn't got sick but I'm not sad that I've changed because a lot of it is good change. Cameron has opened my eyes and made me stop and ask why? .

Everyone changes as they journey through their lives but I think when you have a child with special needs you change paths suddenly and therefore the person you would have become has gone and suddenly with your child you turn the corner and journey along different paths together. Thankfully it's much easier to journey together.


  1. Love this so much. Glad to be traveling this journey with you and Blue Sky. xx

  2. Amen! Nothing else to be said. You nailed it completely.

  3. Thanks guys. It's nice to have friends who understand.

  4. What a wonderful post and I agree with everything too and you are so so right, it's better to journey together x

  5. Thanks hopeful mummy. :)