It is July 2012 and I am on a plane coming home to Australia from Baltimore. The flight is never going to end. It doesn’t really matter though, because my head is bursting from the amazing intensity of the last 3 days. I have been to a conference for families impacted by hemispherectomy surgery and it has literally blown my mind, re-arranged my grey matter and got me thinking along whole new lines.
Why did I go? Because after 11 years since my son’s hemi to fight back against Rasmussen’s Encephalitis, I got sick of waiting until I had enough money to go to this conference I had heard about, and just packed up and went! Why did I go? I had heard and read all these stories about kids in the same boat as mine, had seen pictures of hemi kids having fun in the Californian sun and decided that really, Rory and I could do with expanding our hemi family from one or two families to hundreds! And was it worth it? A thousand times, yes.
The conference not only opened my eyes with a horrible jolt in relation to differences in therapies across just one ocean, but it also opened my eyes to the overwhelming need to belong to a community of similarly affected people. My son needed it; I needed it; and I determined then that I would return home, fix up all his therapies, look into all the other amazing things I had heard about for example, split treadmill walking, what was that??? and finally, before work life and medical issues got their hooks back into me, I would start an Australian branch. All in a week’s work.
I took a day’s leave each week from work and tracked down therapists all over the place. Rory started on a gym program that has changed his life and I got the hospital to do a mailout to all its hemi patients. And it worked. People replied. Each afternoon I would check the email, and there was another one! Who were these people? Why had I never heard of them through my hospital? Why were we not helping each other? I was angry, thrilled, and overwhelmed. Now what was I going to do? They all said they thought it was a great idea, but no-one actually wanted to be the one to start it. I could understand that, for by now I was overwhelmed again with our school and working lives.
But start we did. Another mum and I ran into each other again for the first time in years, we sat and had a coffee and it was done. There was no going back! We met up again with one more Sydney family,and a Melbourne family via skype, and we were away. That was a year ago. We tossed around ideas, life kept getting in the way, but slowly we began to meet via skype and email until a little committee had formed. A wonderfully knowledgeable former police officer gave much guidance and hemi parents proved to be diversely skilled in all sorts of areas. Someone was in PR, someone else in Health with great contacts, someone is a graphic artist, another will be the web site maintenance, yet another is great with finance, with a husband who can do the skype thing!! Each has different areas of expertise, knowledge, experience. Together, we became a little team.
As of October 2013, we have a website in its infancy, a logo, a brochure and pamphlet in the throes of production, a growing membership, we are registered as a not-for-profit incorporated organisation…we are really moving along the road to being an independent yet associated member of the Hemi Foundation. Are we proud? Are we excited? Yeah!!
We hope to all meet in the not too distant future; indeed some of our kids are skyping away with their new friends as we speak! And that brings me back to where I began. Sitting on a plane flying home from Baltimore, thinking what a wonderful world it can be when we work together to help our kids and each other. We are so grateful to the Halls, the Millers and all those wonderful folks who got out there and brought us together. We are only beginning to understand how hard you have worked. Our job is just beginning and we are very glad to have people to reach out to, in order to help us fly solo way down under. We will be contributing to world wide projects like the RE Project and others, because as my son and I learned, we are truly all one hemi family.
So that’s our story so far! We will keep you tuned and who knows? One day the conference might be at Bondi beach!
Karen White (Meisenhelter on FB)
Karen has a 16 year old son Rory who had a left hemi in 2001 to cure Rasmussen's encephalitis. He has been seizure free since then. Rory does well in school with a lot of help at home and would like to pursue a nursing or health related career. He has become a fine young gentleman and his mum and dad are very proud of him.
Karen is a teacher at a local high school. The family lives in Camden, NSW, Australia.