I can hardly believe that this time last week we were sitting nervously outside the paediatric intensive care unit. Hours before we had handed our son over to the super hero surgeons (dreamteam ‘Australian Craniofacial Unit’) for his second skull reconstruction. Officially ‘front orbital advancement and cranial vault remodelling’. Lets be honest I was feeling about a million things at once, and yet not really feeling them at all… because who knows what kind of an outward mess that would have projected.

Rewind 7 months,  I sit in Boston’s routine eye test and hear the doctor say what I really don’t want to hear;

doctor “his optic nerves are swollen”

me“no, don’t tell me that”

doctor “sorry but they are”.

From that point on there was worry, worry about Boston’s brain and the fact it was under pressure and out of room. Surgery was booked, surgery was cancelled, high risk, low risk…who the heck knows risk, second opinions, more appointments, lots of information. Seven months of feeling like we didn’t have a clear picture but what we did see concerned us. Now here we were, waiting for the news that all was well.

Then the news came, he was okay, we would see him soon, all went well. HALLELUJAH!!  In the following hours team members dropped by, specialist surgeons, leaders in their field. They tell us how tight his brain had been, the lining was transparent from the pressure, in places the brain was protruding through the thinned skull. They smile as they explain what was done and that his brain now had plenty of room. Ahhhhhh….deep breath…big sigh.

Now we just had to get through the next few days, this is second time around and we know how fast he will heal, so as I walk through the intensive care doors I bite my lip and tell myself ‘all will be well soon’. There is not much that will prepare you for seeing your child lying distressed and groggy with a gazillion tubes running in and out of their body (okay to be fair there were six). It is like a sucker punch to your gut, but instead of yelping with pain you swallow hard and try to look brave, you are the rock in this situation. I pulled the “everything is fine baby of mine” face while the tears made their escape.

The days rolled over and with each one I had more room to breathe. Ahhhhhh….deep breath…big sigh. I began to realise that for the last seven months I was holding onto fear, worry, gut instinct, confusion, anxiety. I watched Boston’s head as the bruising rose to the surface, as the swelling went up up up then started back down, his features though changed were still my son’s and I loved him beyond words.

Now I could rest assured, I had room to breathe… and so did his brain.

To everyone who has held Boston in their hearts through this journey we can not thank you enough. You’re support and love has made all the difference xoxo ❤