Fear and all the good stuff that follows

Welcome 2013!!!! I must say that 2012 was such a wonderful year for me and I can only cross my fingers and make a wish that this year will bring as much joy. The holiday season was filled with sunny days, abundance of delicious food and lots of family love. Bozzies dad and my partner of the last decade proposed on Christmas day which pretty well was the cherry on top of an epic year. Seeing him as a dad and having his incredible support through the first six months of parenthood has expanded my love for him tenfold…so YES I said YES (apparently well before he could get the question out).

I wrote the below post over a month ago and the emotions that scream from it have, as I predicted, completely mellowed. The laughing and squealing and rolling over have once again become paramount in life…the fear, an occasional emotion that pops up to say hi. A true testament to the saying “all things will pass”. So if last year (or the last ten years) have been a bit poo for you, just remember it can be different.


When I became a mum I realised how much I could love. I can love so much that it makes my heart ache on a daily basis. The thought that something “bad” could happen to this person that is so new to the world but who I just love with almost irrational depth is a little horrifying. The problem is that it is already sort of happening. Boston’s little skull is just not right, it is fused in places that it shouldn’t yet be, it has wide gaps in places where small gaps should be, it is a bit like swiss cheese in quality and unfortunately not doing the greatest job of doing it’s job (that is housing a developing brain). He is more unique then I had even realised, it is not only metopic craniosynostosis, the peadeatricians don’t know exactly what to label it, but it is out of the ordinary even for the already out of the ordinary.

All I know is that my brain just got the message. The message says “This is not the small deal you were making of it, it is a big deal, maybe you should feel scared.” So here I am feeling scared.

The state I have been in since sitting down with our team of experts and getting “the message” is a little on the confusing side. It is something like a touch of grief, mixed with a sprinkling of unknown, added to fear of what “may” be. I assume they are all pretty normal emotional reactions to have when you have gotten the message that your child is facing a serious medical challenge. I say confusing because even though I want and need to feel the grief and fear I also get to look at Boz laughing and squealing all day completely oblivious to any sort of challenge that doesn’t involve sleeping, eating or pooing. It really is a beautiful dichotomy of emotions, all surrounding one special dude.

The things that matter, that will last and be eternal, are the laughing and the squeling. The grief, the unknown, the fear…they will all pass soon enough. Feeling all the emotions is really important, recognising that they are there for a valid reason, but in the end I will accept what is happening because there is simply no other choice then to accept. There is no reason why this has happened it just has. Like all things in life… we choose to see the light or the dark.

May 2015 update – Over the past three years we have discovered that Boz had metopic and biconoral craniosynostosis that was caused by a rare genetic disease called Saethre-Chotzen Syndrome. We’ve been through one surgery with the possibility of more, he has global developmental delays and I still ride what I like to call The Ocean of Emotion. Two statements continue to stand out from this post I wrote way back when we had no idea of the complexity of Bozzies journey.

1. This too shall pass

2. Like all things in life…we choose to see the light or the dark


3 thoughts on “Fear and all the good stuff that follows

  1. Nelly you are incredible and beautiful. Boston is so blessed to have you as his mumma. Sharing your strength and all that makes you fragile is the greatest gift….thank you. Jodie xxx

  2. Girls your comments fill me up with all the warm gooey love that a girl can feel when she knows that she is surrounded by amazing people. Inspiration I can give because I get so much of it from you xox

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