Saturday, 31 January 2015
Time of Our Lives
And just like that, our trip to Adelaide is over and done! My, how fast it flew! We arrived in Adelaide last Thursday and after meeting up with my Aunty Karen and Uncle Dave, we checked in to the holiday park where the conference was held.
Here was a bunch of people I had come to be friends with over Facebook but had never met in person. I knew all of their faces and names but didn't really know them.
I was feeling rather anxious and shy at the prospect of meeting new people. I wasn't sure what I was supposed to say, or do, so I really had to push myself at first.
As it turned out, I never had to push myself at all. The instant friendships which formed and will no doubt carry on through our lifetimes are immeasurable. The first day, the most common phrase heard was, 'Hi, I'm ***, do you have a nevus?'.
Where else can people with CMN and their parents so openly ask such a question, with the knowledge that everyone else there will understand what they are talking about? It is so hard to explain what this conference was to us. It was so much more than we ever could have imagined.
Olive made friends straight away, with a wee girl called Ellie. Within 5 minutes of meeting, they were lifting their shirts and comparing their nevus. They rolled around the grass together, giggling and carrying on.
She was also doted on (as you can imagine!) by everyone else, in particular Danielle - Michelle's (NeSA Director) 13 year old daughter. Michelle's kids are just awesome. They are such a beautiful family, so close and supportive not only to one another, but also to every one of us who attended the conference.
Jaxon and Meisha also made instant friends - Jaxon with a dear boy called Coen, who has a scalp nevus, and Meisha with Ellie and also with the older girls, all of whom have a nevus. All weekend, the kids would be off in the pool, or in the games room. They played on the huge jumping pillow or would wander around the park. They had the time of their lives, and it was fantastic to see them all get along so well. The older girls often took the younger girls with them to do whatever they were doing, or they would all play together in the pool or on the splash pad.
This freed us parents up to socialise and attend seminars/presentations. It was the start of a new way of communication for nevus groups, with having live presentations via the internet with well respected surgeons, researchers and doctors. We learnt a LOT in these presentations, though I am not going to share it on here as some of the new developments are not yet for Facebook publication and I'd hate to put my foot in it somewhere!
We shared birth stories, and I suppose it isn't surprising that a lot were very similar. A lot of us had our babies taken away for a length of time as the doctors were stumped. A lot of us had endless streams of doctors and health professionals coming to 'view' these tiny and helpless wonder's of the medical world. When discussing our experiences, there was no need to explain how situations felt, or why each chose to take the path we did, because we all UNDERSTAND. It is beyond words how comforting these conversations can be!
On the Saturday, we had 12 hours of non-stop presentations. This was pretty full on and we all missed one or another, due to needing some rest. After this full on day, despite being absolutely shattered, we put the kids to bed and had a few drinks with some of the others and reflected on the day. It was really cool to be able to do this, as some of the people had travelled from as far as America and Malaysia.
I had the absolute pleasure of meeting Mark Beckwith and his lovely daughter Megan. Mark is the Executive Director of the US organisation, Nevus Outreach. Mark gave a great presentation on the Power of a Parent.
Sunday, we all took the coach to Gorge Wildlife Park, where we got to hold koalas and feed kangaroos. The kids really enjoyed the park and we all loved spending time with the other families.
As we left the park, Jaxon's new friend, Coen, came up to me and gave me an Australia keyring - "so you don't forget Australia". I almost cried! All of the kids were such kind hearted kids. They were all so helpful and caring and they all really nurtured one another in different ways.
The youngest nevus owner there was Jaxon, a gorgeous wee 4 month old boy with a bathing trunk nevus. He was the sweetest little thing and seeing his satellites on his head and wee legs really took me back to when Olive was a baby (a little too much perhaps, I kept sniffing the poor kid! haha). The eldest was Rita, who is 69 and travelled on her first overseas trip all the way from Florida. I absolutely adore Rita. I loved sitting with her and listening to her telling me about her life. As you can imagine, things were much different when she was young compared to the facilities and care etc that our kids have now. I am so happy that I got to meet Rita, and I definitely hope to see her again one day!
I could go through and tell you what I love about each and every person that was at the conference, but we'd be here for days! Let's just say that all of the people I met, I am so glad to have met them.
As a mum, it is hard to put into words how grateful I am to introduce my girl to others with the same condition as her, at such a young stage in her life. It takes away the 'rare' or 'different' factor for her somewhat, because it means she won't go through years of her life thinking she is the only one. Even if she doesn't remember this trip, we intend to carry on these friendships, and so Olive will always know of other children who have similar skin to her. She won't feel so alone.
This is one of my biggest wishes as her parent - for her to never feel alone. And we have started the ball rolling, both with attending the NeSA conference, and reaching out to others in New Zealand.
I don't want other nevus parents to go through what we had to go through. To have no answers and have to muddle through with little to no information.
I want there to be somewhere for new parents to be directed, for support and information. To have someone say to them, 'it's OK. Your baby will be OK'.
I want doctor's to have a pamphlet that they can give to patients, so they can ring or visit our website or visit us.
I want to hold conferences, so that CMN patients and their family can be kept up to date with new research.
I want others to experience what we did, right here, in New Zealand.
And I'm going to do it.
There is just one thing holding me back. The thing that holds most people back from pursuing their dreams - lack of funds.
We need sponsors. We need individuals or companies to support us financially so that we can get this how on the road. My first goal is to raise $1000 to cover the legal fee's involved in us registering, and to cover the cost of our first pamphlet design and print.
If anyone can help, please email me here or donate here (there is a simple reason for setting up a givealittle site. We cannot open a bank account until we are registered, but once we are, we will be able to take donations via other means).
Thank you, from the bottom of my and my family's hearts, to everyone who donated and gave us this opportunity of a lifetime. It was so so much more than I ever imagined, and I will forever be grateful to you all.