Tuesday, 29 April 2014

This ANZAC weekend , I organised our first ever New Zealand group meet-up in Rotorua, and wow - what an experience. So many wonderful people with so much knowledge and experience to share. We managed to get together 8 New Zealand families - as well as having the pleasure of the director of Nevus Support Australia, Michelle's company for the weekend.

I can't begin to tell you what it meant for us to speak face to face with other parents who have children with the same condition as our Olive, and to talk with those who are older and further along their path. I'm sure others can relate when I say there is something special in being able to talk with others in the same boat - whether it be rare condition like Olive has, or a heart defect, or another type of medical 'ailment', To be able to meet a bunch of beautiful people of various ages who have had such a similar road to the one you are on is both relaxing and overwhelming all at once.

Olive was the youngest person with CMN there, and the others ranged in ages up to 47. For me as a Mum, I found it really reassuring to see these brave and beautiful girls and women (there were no males with CMN there!) leading such a wonderful, fulfilling and normal life. Each one of them was an inspiration for me, and I feel they will be such a positive influence and great role models for Olive in years to come. There was such a delight in watching all the kids playing together so comfortably and getting along so well.

I got to learn about a whole bunch of medical procedures I had no idea about, and to learn of what the others did and didn't like about living with their nevus. I will admit, that for someone who is shy like myself, the whole aspect of meeting new people was a bit scary and I was quite anxious beforehand. But I needn't have been. They were such easy-going people and going by the feedback I have received, they each found it just as beneficial as us. I am so thankful that each family was so receptive to being open and honest with us all, just as we were with them, and that everyone was so interested in each other!

What a blessing to meet this many families in such a short span of Olive's life. Olive of course, was oblivious to most of it. She was more intent on running out of the pub door on Saturday night and screaming her way down the slide at the park we met at on Sunday. We got some gorgeous photos of everybody all together, and all of the kids had a blast.

In what can appear to be a 'negative' when your child is first born with such a distinctive difference, sometimes you can meet some of the most amazing people.

Here is my wee girl with her 'same same' friend, Haley, who also has a bathing trunk nevus.

1 comment:

  1. Our I did not know you had managed to gather this group, be very happy for you.