The Art of Receiving

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 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


Dear Nurse D and Doctor C

Thankyou. From the bottom of my heart and more then you will ever realise…THANKYOU. Today you took the time, and little as it was, it was so very precious. You took the time to see our son as a person, not just a patient. 

Because, Nurse D and Doctor C, when we pulled up in this hospital carpark what did I see? I saw my son’s face turn to fear, tears fill his eyes, his lips tremble and his fists clench. For the hundredth time my heart broke for him and broke because I could not protect him from this fear, could not protect him from why it is here.

IMG_3633_fotorThen Nurse D and Doctor C you took the time. You became his friend, you paid attention to his boundaries, you spoke with him of Pooh bear and his favourite park, about his birthday and his party, you made a game of all that had to be done and you invited him to be part of it.

So now he is telling us a story, in the elaborate miming way he does, of the visit we had. Of a nurse with tickle stickers attached to colourful cords and a doctor with a little bear who helps him treat patients. Then inevitably about the park we visited after we saw you, prioritys don’t change after all.

Nurse D and Doctor C


Hitting a medical storm

The 20th of March was Boston’s two year cranioversary, two years since his big operation that went really well. What an amazing two years it has been, dotted with new experiences, awesome achievements and very little in the way of big scary medical stuff. The 20th of March was also the day we found out there is a whole lot of that big scary medical stuff on the horizon, including another cranial vault reconstruction.

In paediatric intensive care unit after his first cranial vault reconstruction in 2013
In paediatric intensive care unit after his first cranial vault reconstruction in 2013

I recently wrote a post about The Ocean of Emotions that we ride as part of Boston’s journey with Saethre-Chotzen Syndrome. I talked about the tidal wave that had just hit and how it can be overwhelming. Now I feel like we’ve moved from tidal wave to some sort of roughest seas on earth situation, where the waves are MASSIVE all the time and you just sort of begin to feel immune.

SPLASH yup there is intracranial pressure and Boston’s brain is too big for his skull….SPLASH we must create more room so another cranio reconstruction surgery needs to happen in the next two months, sorry what? your second baby is due in two months?…SPLASH we have to cut the really successful silicon sling that holds his droopy eye open, so there is another surgery that will need to be redone….SPLASH we need an MRI under anaesthetic before then and observations by the neurosurgical team…SPLASH also something strange is going on in this part of his head, maybe it is also affecting his spine. OKAY OKAY I am freaking drenched already!!

A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples
A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples

In my head that is what the meeting felt like. In reality everyone present was really supportive, helpful and positive…we even had a few jokes to lighten the mood. After two years of relative calm it feels like the next six months could hold the mother storm, in my heart I know it won’t really be that bad, after all everyone has the ability to find happiness no matter the situation we are facing.

Already as this new challenge begins I find myself being motivated to reach out to other members of the rare disease and craniosynostosis community. My thirst for knowledge surrounding these challenges is uncovering new information and building a better understanding of what our son will go through. We’ve been brainstorming how to navigate the rough seas in the most efficient, relaxed and positive way. Reaching out to family and friends, making lists and checking them twice, finding time to meditate and reflect. Reminding ourselves that through this time we will be guiding Boston on his journey but we will also be welcoming our newest arrival earth side.

I guess what I am getting at is for those who feel like the sea is just too darn rough and you are drenched to the bone and…lets face it… sometimes you feel like telling the world to GO GET PLUCKED…there is always a silver lining (for crying out loud there MUST be)… and maybe it is just time to build a bigger boat.

That is the bit of inspiration I am selling, and I am sticking with it 😉

A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
A nice reminder of how quickly we heal. This is a couple of weeks after major surgery