Saethre-Chotzen Syndrome

To My Past Self – Here’s what you didn’t know on the day of your son’s diagnosis

~ Mumsgoneclimbing ~ Leave a comment

This is a post I originally wrote for The Mighty, when they asked “If you could go back to the day you got a diagnosis what would you tell yourself?”

 

Today, the doctors will tell you that your baby boy is missing part of his DNA, and they do not know exactly how this will affect him.

I know you want to meet the news with dignity and grace, because this is not a diagnosis. This is your son, and you enthusiastically accept every part of him.

That is not entirely what will happen.

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As you sit in front of the panel of experts, you will be commendably cool and calm, nodding at their carefully-worded responses as your stomach knots and your throat aches. They won’t see the ball of emotion that is rising slowly from within.

You will securely place your beautiful firstborn in his car seat, hop in the passenger side, and wait until your husband pulls onto the highway before, finally, the tears come. You will sob as a sadness takes over that you have no word for.

In the days, weeks and months ahead, that sadness will visit you. It will surround your worries and fears and blur your visions of the future with its salty tears. And the sadness will make you feel guilty, because you never want to feel this way about the baby you love so much.

I am writing you to say: Everything is OK.

The sadness that is hurting you — embrace it. You are not a bad person for dreading this challenge. This pain is nothing to be ashamed of or hide from. This journey can chew you up and spit you out, pummel you down and lift you up. You may laugh with abandon and cry with despair, sometimes at exactly the same time. I am not going to lie — this is going to be hard.

But…

It will also be the most joyful and rewarding experience of your life. You’ll feel gratitude for the smallest things. You will learn a new respect and acceptance for others. You will help spread awareness of rare disorders and craniofacial anomalies. Your community will come together in such unexpected ways to support your son’s journey.

Oh, and your son — what an amazing person he is. He will continually surprise and delight you with each of his successes. His personality will be wonderful and unique. He will melt hearts and break down barriers wherever he goes. And dear one, he is happy.
So here I sit, your future self, sending love to you always through this incredible journey and letting you know: Everything is OK.

Room to breathe; Boston’s Second Surgery

~ Mumsgoneclimbing ~ 1 Comment

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.

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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.

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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.
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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.

IMG_4275_fotorTo 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 ❤

One week post surgery, our little cranio warrior
One week post surgery, our little cranio warrior

The Art of Receiving

~ Mumsgoneclimbing ~ Leave a comment

24 hours ago we launched a fundraising page for our son Boston. It felt really weird…

As many of you will know our little guy, cute as a button busy as a bee, was born with Saethre-Chotzens Syndrome which caused craniosynostosis. He has already had one major surgery for cranial vault remodelling, and this year we hit what seemed to be a medical storm resulting in… Boston needing another major surgery.

IMG_3867_fotorWe’ve decided to travel to ‘The Australian Craniofacial Unit’ in Adelaide. They are an amazing team who have dedicated their professional lives to understanding this incredible field. Founded and lead by Professor David David, an extraordinary man who learnt from the father of craniofacial surgery, Paul Tessier.

Although the choice seems easy I can assure you it took time and much deliberation. One factor that crossed the table was money. We are lucky in Australia, most medical expenses will be covered by medicare, but repeated trips to a city in which we know no one…that would be our responsibility. Adding together flights, transfers and accommodation for just pre operative visits…BOOM $3000. By the time we are heading home from surgery we’ll be up around $9000 and then there will be post operative check ups 8 weeks, 3 months, 6 months, 12, months. BUT there was no way we would let money be the decider in our son’s health, this is his skull we are talking about, his vision, his brain…his future. So the house deposit we’ve been saving got promptly dipped into, and we felt lucky we even had the option.

A few weeks ago my very good friend brought up the idea of fundraising. “hmmm like selling freddos??” I asked. Clearly I had no experience or idea about fundraising, but the other issue I had was it just felt weird. Asking for help felt strange, and for me asking for money felt very strange. Of course Boston’s health is an amazing and worthy cause, in fact any fundraising we did would also help to spread awareness about craniofacial abnormalities and that is a wonderful cause. But it made me nervous, were we worthy? did we have a right to ask? there are people fleeing war torn countries, surely we should suck it up? I set our original goal at $4000 until my husband pointed out that would only cover a small portion of cost and “ah what are you thinking Nell? just set it at $10000″… Why did it feel so awkward?

Well 24 hours ago we launched gofundme.com/bostonsadventure and we have just hit $7330 IN DONATIONS! Ahhhh YES-ONE-DAY- SEVEN-THOUSAND. To say we are completely gobsmacked, awed and overwhelmed is an understatement. The love and generosity that has spilled in has been the most heart warming thing EVER. Whether people have donated, sent beautiful well wishes or shared our cause, it has just been so beautiful to see the love that surrounds our son. And what have I been doing today? Predominately walking around with a stunned confused look on my face.

We live in a society in which we are pushed to focus on what we have, and are constantly encouraged to have the biggest and best of EVERYTHING. You can do it alone, and do it better then the “Joneses”. The reality of being connected to our community and village takes more energy then waking up next to your cousins hut, these days family is spread across the country and around the world. Yes, we are all connected through technology… yet rarely do we hold each others hands… and sometimes we forget. We forget that we are nothing without each other. We forget that giving to those we love can be the most cherished part of our lives. We forget how to rely on others, and how to let others feel the joy of helping us.

To everyone who has taken part in Boston’s fundraiser today and into the future, we can not thank you enough. Now with every flight, appointment, blood test, scan and surgery, I will carry the thought of all of you. You have ownership of Boston’s journey…we are in this together… and that beyond all dollar signs is the most important thing xox