I so often read those ‘copy me and share’ Facebook posts about being available to help, about reaching out for help. I wonder how much weight is in that, I wonder how many people reach out when they need to. I know I struggled to ask for help, and so often I go to an auto response of ‘great thanks, how are you’. I rarely do that now days. I’m much more raw, naked and open … It’s not hard to know how I am feeling if you ask. It was Dylan’s challenging health journey that tipped me over the edge.
10 June 2016
This was the defining act that made a difference in the outcome of Dylan’s journey. His journey may of been shorter or more traumatic, ending suddenly or long with lifelong disabilities, fortunately we will never know. What we do know is that under the circumstances Dylan’s outcome is a miracle and that’s really because of the courage to reach out and ask for help. I had day surgery that Friday, I was visibly upset about the MRI results we’d received a few days before, we had no direction with what to do next, it was a wait until they call you situation, but it didn’t feel right. After an urgent request for a neurosurgeon review went out to Royal Children’s Hospital and then to Peter Mac that week, a call to RCH was answered with “we won’t be looking at that request for the next two weeks. If you want to put your mind to rest go to your nearest emergency.”
I went with my gut, but it wasn’t a thoughtless decision. I was opening a door, revealing something quite personal at a very fragile time, I did ponder how people might ‘see’ what I was posting, how I might be judged for opening up this wide. It’s easy to share joyful moments, celebrations and loving memories, kittens and cakes … But it’s a whole new can of worms when you start to share broken moments, difficult experiences and sadness. I know this. I also knew that once I had stepped through that door and revealed the situation it would only be fair to continue to update on the situation, so it wasn’t a fleeting thing it was going to be a long term commitment. This was Dylan’s journey and I was traveling with him, as well as the rest of our family, so I had to consider them too, and how my openness would affect them. I needed their consent if I was going to share any of it.
I felt very strongly about posting this request for guidance to my friends and family on Facebook, there was a nagging voice in my heart that was edging me forward. And so with Dylan’s permission and Marco and Joshua’s support I reached out and asked for help.
11 June 2016
The guidance I desperately needed arrived that Saturday morning. The day that we casually walked into Royal Children’s Hospital Emergency and stayed for a while.
Heartfelt gratitude to Carol, because she was listening and answered the call, Dylan is alive today.
A side note:
The physical symptoms had progressively got worse, Dylan woke up on the Saturday morning in a lot of pain, bad headache, pain in his neck and vomiting, totally lethargic. Once seeing the hospital MRI that was done prior to surgery it was an obvious emergency and I now understand why they prepped the surgery for that night but with close monitoring wanted to wait for the Sunday morning. The growth of the tumor had not only created a blockage which resulted in the build up of fluid in his brain, but there was a tonsillar herniation (cerebellar herniation) which was causing compression of the lower brain stem and upper cervical spinal cord, this increased pressure can result in dysfunction of the respiratory and cardiac centers in the brain.