Sometimes, when you sit alone at the computer writing emails, reading grant applications, keeping up with Facebook, researching, connecting, planning, lobbying, trying to keep on top of all the regulations, fundraising etc ........ you can feel as though all that you do goes very much unnoticed. In fact there have been times when I have wondered if the time and effort makes any difference at all. Perhaps if I walked away not even a dent will have been made. It is not just my effort. My family spend countless hours as well helping out in their areas of expertise.
Then there comes the moment when you are contacted by a new member, perhaps a parent of a new baby, who is going through that horrible scary steep learning curve that we all know so well. Those moments when you fear for your child's future, when you don't know which way to turn, when you are learning about this condition that you have never heard of before. Perhaps it is a parent of an older child or even adult, who has not had the opportunity to connect with others who understand their journey with CMN or who have for one reason or another a need to talk and connect now. Perhaps it is a Youth or Adult with CMN themselves who want to find out more or connect with others.
It is those moments that make it all suddenly worthwhile. It is those moments that remind me of why I do this.
Of course I love being able to share good news on the research front and useful resources with everybody as well but it is this personal contact and knowing that we have provided a safe place to land for these people that keeps me going.
Last week I had one of those great moments. It was one of those moments that REALLY made me feel as though the long slog was worth it.
I was chatting with one of our new Mums about her precious baby and what she should be worrying about, what she should be doing etc - I think I have had similar conversations with most of you so you know the one!
This Mum sent me a copy of the management plan given to her by her Consultant Paediatrician.
Under the heading of Management was written -
Education for Parents -
Advised to link with the Australian Nevus Support Group .....
Granted our name was not quite right but WOW!!!!!!!!!
I am so excited and pumped by this. We are getting there. We have the respect and support of the Medical community. That is a BIG DEAL! This respect has been hard won. They are a sceptical bunch our Doctors in Australia. You have to prove your worth before they will even consider embracing what you have to offer.
This has been a slow work over a decade.
One of my biggest concerns is that there are families floating around out there who need the support of others but who don't know we are here. It sure makes the holes in the net smaller when Doctors are directing their patients in our direction.
So thank you to all of the wonderful Doctors who embrace and support us in our endeavours for their patients. Who have the wisdom to know that a patient needs more than just medical care.
- and to the Mum who sent me this management plan- thank you - you made my day :)
( it was a great plan as well, which also shows things are looking up for CMN patients in Australia)