Who are we?
We are just a bunch of parents who have struggled with wading through volumes of information to find out something that then contradicts what we thought originally.
We've found that talking to each other, and every family is so very different, makes us realise that we are not on our own and that to share, talk, laugh, cry is all part of the process and journey.
Please be aware that the information on this website is just what we have found, and in no way states that other information is not accurate or essential.
We'd love to hear from anyone who has other ideas that we can pop on the website, or wishes to be part of our closed group. This website is for New Zealand families in the main, but if someone else gains comfort from being part of the network too then that is fine.
Just some friendly rules before contacting us:
The following are a list of guidelines we find helpful in governing the content and environment of our community. Please take each and everyone one of these guidelines into account before communication. Thanks heaps:
It's Ok to disagree;
No opinion is valid unless it is backed up by literature or logic (preferably both);
Emotions other than excitement, eagerness to share or learn info, and love for your fellow community members are banned;
No negative personal statements allowed;
There is no such thing as a stupid question;
No criticisms are allowed without accompanying suggestions for improvement;
Do not shoot the messenger.
For all parents - from a Scoliosis patient some six years on from surgery:
"I needed an Xray for a survey - to be completely honest, when I got the call I was excited because I thought “Oh easy, I’ve done this a million times before”. But whilst having my X-ray I was reminded about the sheer amount of fear and anxiety that your kids must feel each time an appointment comes around. The thoughts racing through their minds. What happens if my curve has progressed? Have I been wearing my brace enough? Will I need surgery?
I felt uncomfortable having to get undressed, and appear in front of others wearing barely nothing but a gown. I can imagine that this is so very hard especially if you are beginning to go through puberty. It is a very vulnerable position to be in.
And yet, your sons & daughters do it over and over and over again. The appointments, the fear, the anxiety, being uncomfortable and hot, the awkwardness, the peer pressure, wearing a brace at school and so so much more.
I just wanted to encourage you and say that even through the tears and tantrums, your daughters and sons are becoming more resilient and learning skills that they will have for life.
Be patient with them as they really are going through some intense stuff.
And parents, be patient with yourselves. Seeing your children go through this must be really really hard!
- Gemma C