A little thanks on a Monday eve

~ Mumsgoneclimbing ~ Leave a comment

I just finished watching a movie that lit a bit of inspiration inside my belly. I feel poetic, despite the fact I have never written a poem in my life (well at least one that I felt in any way proud of). It is the new year, I am not too sure what it means to you, but for me at least January brings about reflection and hope. As cynical as I sometimes feel, in my heart of hearts I am a romantic and I dream about finding passion in every inch of life.

I have always felt at a loss when considering what my true passion is, what I could do that would feed inspiration and get me excited about waking up each morning. I guess I am speculating mainly in a career sense. The thing is I know something that makes me feel so whole and complete, that I love to do, that feels right and leaves me smiling from ear to ear. It is writing. But I just have never seen how I could make writing a career, in my head it seems impossible (which is a little insane considering it is an accepted and very real occupation). Until I started this blog my writing was shared with my teachers and my partner, the later occurred usually when my journal was left lying around. Now I share my love and my life with all of you.

This post is to say thank you. Thank you for letting me share this thing I love, thank you for enjoying and thank you for telling me you are enjoying. Because honestly, it makes me very happy.

xox

Fear and all the good stuff that follows

~ Mumsgoneclimbing ~ 3 Comments

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.

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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

xox

Baby mumma – Metopic Craniosynostosis

~ Mumsgoneclimbing ~ 2 Comments
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.