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.
We’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