Baby mumma - Metopic Craniosynostosis

Mum worries about my head...
I am worried about her being crazy embarrassing

Boston is one little man who goes against the odds. He was conceived from luvin 5 days before I should have been fertile, along with only 5% of other babies he was born on his due date and like only 1 in about 15,000 he has Metopic Craniosynostosis (still trying to pronounce that one).

What does that mean exactly...in simple terms at some point during his time in my belly the two bones that form Boston's forehead fused together. This would not happen to most children until they reach around six years old. For Mr B it means a ridge runs vertically on his forehead, his eyes a slightly closer together, his right eye has trouble opening and his head is taller but smaller in circumference. That is the outside, on the inside his brain has a little less room then most babies his age and his bones are slightly different in shape.

What we know for sure is that Boston will have surgery to split the fused bone sometime before he is 12 months old. It is a procedure that happens quite a lot with great results and the experts tell us that after surgery it will be hard to pick that there was anything out of the norm with Bozzies skull. What we do not yet know is whether there will be other affects caused by the syndrome, either physical or with cognitive function, but time will tell as it always does.

Becoming a parent adds a dimension to life, suddenly you are responsible for an entire human being, undeniably with that responsibility comes new worries and concerns. Comprehending what exactly Metopic Craniosynostosis means to me has been difficult.

From day one the medical professionals have been very positive and optimistic. We keep a close eye on his development, making sure he reaches milestones like smiling, grasping, cooeing etc (and with some he is ahead of time *proud*). We make sure he see's the local health care nurses to check weight and growth every two weeks, every six weeks we visit our wonderful paediatrician at Tweed who keeps us up to date with results and more specific health issues, then it is a waiting game to see when exactly the team at The Mater Children's Hospital will schedule surgery (but so far they plan between 8 and 10 months). In general the attitudes are really relaxed and so in general I feel completely fine about Boston's little forehead journey.

But he is still my baby boy and I still worry. I worry about the unknown. Will the surgery go as planned? Will it have long lasting affects we do not yet know? Will he struggle to learn new things or grasp new concepts? Will he be bullied about looking unique? Will this little part of him define who he is in any sort of random negative way? The essence of any question is will his wellbeing be affected?

When I begin to worry too much I play a little game in my head. I remind myself that no matter how much we love our children their future is always unknown. I remind myself that any child will have to face many challenges, we can never know what they will be. I convince myself that no matter the challenge Boston has to face his dad and I will give him the tools to work his way through, and when we don't have answers we will still be unshakable support.

I do not know why Boston was given this challenge but I know it is teaching me acceptance, maybe that is a lot of what being a parent is about, accepting we can not control our children's journey, we can only guide and support them with all our best intentions.

Where is my little bit of magic?

When I was 19 an older friend looked at me with frustration and called me naive. It made me so mad. Just because I believed there was good in everyone and saw beauty in the world, THAT made me naive?!

In a week I turn 28, now I sort of know where she was coming from. Since I was 19 I have had my heart broken several times, lost friends, realised dream jobs were not so dreamy, been conned, been used, realised the world is broken, realised humans are generally to blame, have accepted some problems are literally too big, watched my friends battle for their relationships and as a whole realised happily ever after involves a hell of a lot of bumpy roads. In truth my 20's have been a hard slap in the face, not overly traumatic by any means, but still enough to crush my "naivety". 

The problem is that too often I hear myself sapping the magic out of life. I do not believe in the fairy tale any more and so I whinge and whine about the "realities" of life. You know...now that I am so wise and realise the truth. I can not help but wonder though that if I am so wise why do I ache for the magic of being 19? I am not talking about the late nights, cocktails and wrinkle free skin. I am talking about the hope and belief that anything is possible, seeing goodness in the world, having dreams and really thinking they will come true.

A bit of magic?

Now I have a little person in my life who will laugh and coo with so much joy at what I can only figure out to be a ray of light on the wall. I love Boston so much it aches right down in my belly and it makes me really want to find that magic in life, because quite frankly I want to share it with him.

So this little rambling post on a public holiday night is me making a promise to wake up each day and look for my magic. It has been lost a while but I know it is here somewhere, I get glimpses of it and I think it is about time I stopped whinging about life and start celebrating it.

I hope you all do the same xox