Baby Mumma - The concept of strength and happiness

Well it is about time I updated Boston's journey for those of you who are not in direct contact with the news source. The past two months have been dotted with appointments with all shapes, sizes and colours of specialists. Plastics, neuro, eyes, physio, occupational therapy, genetics and general paediatrics. Everyone is very pleased with how his surgery went and with his upbeat amazing skills at recovering (my words not theirs). So what comes next? NEXT far out I thought it was over!! (that is the super optimistic me).... yes what needs to happen next to balance our little man (the realistic me).

Bond look

It is likely that Boston will have another major surgery before his second birthday to reshape the back of his head, although this hasn't been put in ink as yet. The surgery will once again give his brain more room to develop normally and reduce the chance of intracranial pressure. He is booked in to have eye surgery in the next couple of months to attempt to lift his right lid up, though there is uncertainty about the outcome. A sling will be inserted that opens when the brow is lifted, unfortunately little people who have had cranial vault reconstruction also have had the muscles in their heads cut through, which can affect how much they can raise their eyebrows and give the bond look. However if the surgery is a success they will do a second surgery to straighten his eyes. There will be lots of patching to come so get your pirate voices ready arrgggghh!!!

mini pirate and crazy stead

Genetics are a bit puzzled at Bozzies totally normal blood tests. Due to quite a few physical indicators they believe he may have a syndrome that is also linked with craniosynostosis, but the proof is not conclusive yet. The current plan is to run more in depth tests on his DNA and see where the double helix leads. Finally, the physio's and OT's are happy with his recent jumps in development even though he remains behind the eight ball.

Apart from all of that our little man is nearly one and an absolute champion. He is commando crawling all over the place and has a wicked scream picked out for his frustrated moments (like YAY for us). Sooooo what has all this got to do with the concept of strength and happiness? Well I must say the past year has been unexpected and challenging, and full of the most beautiful praise from those we love. "You guys are doing amazing" and "You're so strong" are phrases we happily hear quite often. Yet my head does not always get it. I am proud of the attitude and approach we have taken to Boston's medical journey, but I also think there is hardly a choice.

We often look at situations from the outside and think how incredibly hard they would be, that we could not cope with anything like it. At this very moment I have close friends facing challenges with the most amazing attitude and strength...maybe I inspire them...I know for sure they inspire me. We see people endure hardship and we see their strength of character, the best side of the person they are.  It is hard to place your self in their shoes. But when the shoes are on something amazing happens...You look to the most positive aspect of the situation, you are aware of the knowledge and wisdom you are gaining, you see others that are in far harder struggles then yourself. When you get backed into a difficult corner you either accept it and snuggle in with a big cup of cocoa, or you stand there frightened and miserable forever. Human's are programmed to find happiness, it is a concept I first heard of in a talk given by Dan Gibert (I thoroughly recommend you watch it). My life so far has proved his point correct, we really do just want to choose the cocoa.

Don't worry be happy bro

With all this in mind take some weight off your own shoulders, because no matter what challenge comes your way you will find the strength, learn the lessons, inspire those around you and find happiness.

p.s this doesn't mean we do not have poo days, cry regularly or would choose all the medical interventions that Boston has to have.
p.p.s nonetheless it does mean that we are eternally grateful to the universe for every bit of it.
p.p.p.s please continue the praise because it makes us feel amazing xoxoxox

Baby Mumma - Break out the aprons I AM A HOMEMAKER!

Well it has taken ten months but I seem to be finally grasping (and let's face it...accepting) my new role. Months ago a beautiful friend of mine recommend I read a book  called "You are your child's first teacher" by Rahima Baldwin Dancy. Like most things these days it took me a while to actually check it out from the local library, but I am glad I did.

During pregnancy I read a lot of books about my developing baby, morphing body and birth. Fast forward a year later, I am well and truly a mum and yet to pick up a parenting book. Okay okay lets be fair...parenting is a lot of learning as you go, especially when you hardly have time to shower let alone get comfy with a good read. But now we are all into a better rhythm of family life and I was surprised at how inspiring researching my new "job" could be.

I have learnt that in all facets of life you should gather knowledge from many sources and choose what feels right for you. Not everything in this book resonates with me but all and all there is a lot of food for thought and some total gems. The big one for me being the role of homemaker. It is tricky in this day and age to grasp what a homemaker is, I certainly had not thought about how I could embrace my new role. To be honest when I told people I didn't plan to head back to work anytime soon I felt even a little hmmm... ashamed is too harsh a word but down the same alley. In my head the thought pattern went "fantastic I am a mum now! but what else can I/should I be as well? I still need to pursue a career right? because being a mum isn't enough?? how daft is my head? or is it everyone heads?"

Rahima talks about creating a sanctuary for your family to live and grow within, a retreat from other stresses in life, a place where a certain rhythm guides us through the days, weeks and years. It has sparked in me a motivation to create an actual home that we can all find peace and love within. In turn I now feel like I have more purpose, this book gave my role more importance then I had previously allowed it.

Here are some other points from Rahima that I have been sinking my teeth and mind into.

1. Creating rhythm in life each day, each week and each year by saying prayer before meals, reading a particular lullaby before bed, having Thursdays as baking day or park day or craft day! Celebrating birthdays, cultural events and the changing of seasons to embrace the special times of each year. 
2. Allowing children to become part of our lives without being the constant centre of attention by welcoming them to help with what needs to be done and allowing them time for independent play and exploration.
3. The less is more concept (explored much more in Simplicity Parenting another parenting book, by Kim John Payne, which I am currently devouring at an even faster rate, but more about that one next time.).

Love

On the eve of my first mothers day I find myself filled with love. I have been making a very conscience effort in the past week to really be aware of my world. At times life seems so hectic that one day rolls into the next and we forget to be thankful or to relish our joys.

Last night I was buzzing from a busy day of motherhood, tossing dinner together before I planned to veg on the couch for 45 minutes then climb into bed before the usual broken nights sleep. Then I stopped...I could hear Steven reading Boston a bed time story, and I took a moment to see the reality of the now I was living. I looked at the fresh wholesome food in my hands, I listened to my family and I said to my self three times, "I am at the end of a beautiful day, preparing wonderful fresh food for my family, in our home, while I listen to the man I have been in love with for over a decade read to our amazing son." I felt very blessed, yet this is a normal night for me, so I must be one lucky girl.

Baby Mumma - The journey to the otherside

Only a few days to go

The night before surgery I was tucked up in a hospital bed only a few metres away from Boston and yet I missed him. Eight months of waiting had passed in what seemed a blink of the eye, here we were, was I ready to let it happen? An uneventful day left me feeling relaxed and with little trepidation, it seemed Boston felt the same because it was bath time and off to bed at 5pm just like every other night. The sun rose on surgery day with me catching a mere 3 hours sleep, jumped the gun with my routine confidence, apparently getting through sleep cycles with lights flashing, machines beeping and babies crying isn't such an easy task for young Boz.

Surgery day felt like a blur. Through tired eyes we both struggled without the comfort of a bottle (Boston had to fast and it seemed wrong for me to steal his milk). The lights, beeps and cries continued to prove too much stimulus and as the day wore on Boston approached cracking point. Super team Steve and my mum were standing by with entertainment and cuddles, no doubt the day would have been ten times more stressful without their constant dedication. My nerves were beginning to mount, surgery was so close we could touch it and I struggled to shut down my brain as much as possible, trying not to get too emotionally drained. When the nurses said it was time to go my stomach did a flip, my heart began to race and instead of wanting to run away I really just wanted to have it all over NOW!  

last weekend exploring with daddy and lovely flowers from Shelly and Stu

As we entered the waiting room Boston reached over tiredness meltdown, so as I answered the same questions over and over (full name, date of birth, what surgery is he having, allergies, is this your signature signing your son away???) I rocked back and forth and bounced my little man, so before his baby sized sleep mask was over his eyes...Boston was asleep. The whole time my blood was pumping and my head was swimming...what was I thinking? nothing... everything I could have thought about I didn't want to. It was actually nice to feel his body completely relax in my arms before I handed him to the team. Then we just had to walk away.

Feeling over tired, overwhelmed and pretty sick in my stomach we walked out into the humid air of Brisbane in search of food and a source of distraction. The wait felt quite numb. I didn't want to let all the what if's keep running through my head (though some did manage to bowl their way through) so we ate, I took lots of deep breaths and turned to a calming tea to sooth my nerves. Every few minutes I would send Boston some love, which seemed to make everything feel better. I even saw the irony in the tea shop giving us a mini hourglass to time the steeping tea (like sand through the hour glass these are the moments we just need to pass).

Three hours later we made our way back to the hospital in pouring rain and $3 ponchos. We sat in the waiting room with all the other anxious family members, crossing fingers our little cherubs were safe. Then Dr Theile popped his scrubs up'ed self around the corner and called Boston's name. His relaxed body language and light tone told me what I needed to hear, but the words “everything went great” were truly music to my ears.

Our adorable mushroom baby day 1 post operation

Even though we still had a long few weeks ahead of us so many fears evaporated in those moments. I could have jumped for joy and the grin spread across my face told the story. It was over an hour before we got to see our little guy with his head all wrapped up so beautifully. Some of the tears I kept letting escape greeted him in his ICU bed. It was the first time I had seen him look “sick”, bandaged with tubes coming in and out from almost every limb available. But it wasn't a sad moment...just overwhelming, there was a lot of joy in just being able to touch him and hear him.

There was something else happening that night, a family lost their son in a room only ten meters from Boston. Of all the things that had happened that day hearing his dad's voice made me lose it. I realised their reality was the worst case scenario I had played in my head for that same day. My heart ached for them. It was an accident, not a planned surgery and it made me realise that we all share a risk of having to say goodbye to our children, a reminder to live in the moment with joy and love.

Ahhhhhh my hair is freeeeeeee

The next few days blurred together. A mix of medical observations, blood pressure, heartrate, temperature, fluids. Different experts stopped by each day; neurologists, plastic surgeons, pain management, paediatricians. A few days in and you look forward to the familiar faces, especially when they give you good news “looking great” “on track recovery” “you'll be home soon”. Day and night don't have the wonderful divisions they do in the outside world. Night has lights, voices, cries, checks and all the monitoring that envelopes each day.

As the days passed the amount of tubes and machines attached to Boston started to go down along with my nerves. His drowsy self became more alive and even with eyes swollen shut for 48 hours he managed to smile and play. KIDS ARE AMAZING, when they are sick and in pain they let you know but as soon as they are well there is no feeling sorry for themselves, they get right on with the most important things in life. When we hit day 5 post op and Boston starting pulling his IV cords, I crossed my fingers we would be home sooner rather then later.

Horses, balloons and getting packed to head home

Easter weekend with a new look and a sweet scar

Each day brought a wave of relief, we were one step closer to being home and having our super special little guy back to perfect health. Seeing your baby go through any medical experience breaks your heart, from stomach bugs to major surgery, you deal with that feeling of helplessness. But here we are on the OTHER SIDE and it feels AMAZING!!! Every day Boston is getting back to his old self (even his crazy sleep patterns are settling with a little help from homeopathy and bodytalk). I have to keep reminding myself that everything is okay, (OH MY GOSH IT TRULY IS OKAY) then I smile and feel the joy in my belly, our little man is home safe...

Cheeky Gow Cousins

p.s A big massive huge THANK YOU to our wonderful friends and family who have sent Boston so much love and been amazing support through a BIG challenge in a little mans life, you are irreplaceable and loved very much xoxox

p.p.s To the team at The Mater, thank you from the bottom of our hearts. You made us feel safe and at home through our most difficult challenge yet. The plastic and neuro teams are brilliant, and to the wonderful nurses in ward 7 south...Boston won't miss the needles but he will definitely miss your smiling wonderful faces.

Baby Mumma - Surgery here we come

So here we are, 7.5 months after Steve was looking worried and I was convinced all was totally normal (ahhh the high of labour hormones) as Dr Kettle checked our newborns head. His voice was so calm as he explained that he believed Boston had premature fusion of his skull, my wonderful midwives assured me all other vitals were perfect and that was enough for me.

Now I can pronounce words like craniosynostosis, I know what ICP is (intracranial pressure), I know that Boston's metopic and both coronal sutures are fused. It is truly phenomenal how much our son has already taught us. I also know how many wonderful people we have by our side. Boston is lucky he lives in Australia because the public health care system has handed him a wonderful paediatrician, some of the best neuro and plastic surgeons in the country and support of an array of child development professionals. We are also blessed to be surrounded by friends and family who have fallen head over heels for Boz and give their love constantly.

Alright, alright enough fluffing around, I know you want an update. The latest CT and MRI scans came back pretty positive. There is no ICP, meaning his brain is not yet under pressure, and the MRI confirmed he has all the glorious parts of the human brain and they are all in the right spot (FREAKIN YAY). We also sat down with the surgeons and went through what to expect from the upcoming surgery, which is currently set for end of March. I was dreading hearing about the risks involved, picturing my bubbly exterior breaking as I started to cry uncontrollably, but it turns out my worst fears are very very unlikely and the risks involved, although not exactly the common cold, are quite manageable in most circumstances.

The biggest aim of surgery is to give Boston's brain enough room to grow without affecting his developmental progress. The incredibly educated wonder doc's will make an incision over his head from ear to ear, then remove the front part of his skull, take it to a table, remould, then screw it all back in place with pieces that dissolves over 12 months. Yes this is TOTALLY INSANE AMAZING. Our head plastic surgeon, Dr Theile, tried to explain how Boston would look, although I am trying to keep any sort of expectations to a minimum. They do not think the height of Bozzies head can be dramatically reduced, he will still have epicanthic folds near his eyes, he will have a forehead that protrudes instead of collapsing, but to start with it may look quite square and overcorrected. After falling in love with his unique look I am a bit scared about getting use to another unique look, but no doubt in this world I will fall in love once again.

The date arrived by post and although I thought I was itching to find out there was no stopping the tears when I read it, apparently emotions run deep. For now, we feel really good about the surgery, there is an element of excitement being able to see the other side but also the apprehension of not knowing what will happen.

I made contact with a group of other parents who have cranio kids, their stories are pretty darn inspiring, and it got me thinking how very lucky we are to have been gifted with children that force us to utilise the very best parts of our character. Thanks Boston, you rock our world.

A little thanks on a Monday eve

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

Baby mumma - fear and all the good stuff that follows

The brown hair, blue-green eyes and strong chin family.

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. Boston's 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 poop 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 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 peds 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 Boston 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."