It is a very strange feeling when you are standing at the crossroads after a long journey of decision making to go down the road less travelled.
Why would you even choose it? Easy. Because you want a better life for your child than they currently have due to their condition.
In our case, it is for our son Mikey Danger who is about to undergo Hemispherectomy Surgery to treat his intractable epilepsy he’s been living with since he was 1 years old. He and his twin, are also about to turn 6 soon!
He has spent the first 5 years of his life fighting. We have spent the first 5 years of his life fighting for him. Fighting for answers, inclusion, acceptance and support.
The hardest thing? Watching him fight continuously for things that should come naturally. Communication, movement, learning. All things we take for granted when we aren’t living with a brain injury or a condition that jeopardise these things.
As this chapter closes and we leave behind the uncertainty of living in limbo land, watching and waiting for progress, or in our case, no progress. He has undergone many pre-surgery tests since the beginning of May and these tests did bring up emotions not felt within me for quite some time. Mainly, Anger.
Anger that this is an option that we have had to consider. No parent should have to make such a hard decision. We want to be choosing what holiday destination we would like to go to, not this! However for us, and many other families choosing epilepsy surgery, this is our priority at this point in time and it is also our life. It is all-consuming.
We have a date set for his surgery in a couple of weeks time. One chapter is beginning to close and another will begin.
My overly positive nature could be that I am on the breach of insanity. I flip between being hopeful and terrified!
We have been so fortunate this year to have attended the very first Hemispherectomy Conference held on the Gold Coast (just so happens to be a stone throws from where we live!) and we have met the incredibly brave families with their amazing children. This gave us the much needed hope we have been searching for these past years.
We are under no illusion that the next few months are going to be hard. In fact, I am in the brace position, waiting to crash. To try and counteract this, I am ‘carbing up’ on chocolate, rice, pasta, more chocolate and vitamins. I throw some veggies and fruit in there too (like grapes, pulped and poured into a glass!)
I will update over on Facebook leading up and including, the post surgery weeks. Bye for now and see you on the other side!
Thank you all for the love and support 🙂
Kelly (aka Danger’s Mum) xo