A friend of mine Kristin, called me a Warrior Mummy last week. Those two words really made me think, and they have been stuck in my head like a brain worm, that song that just repeats over and over.
Am I a Warrior Mummy? If I’m not one now, can I be one? How do I go about becoming one? Am I strong enough?
I have spent most of my free time this week researching, reading, and digesting every bit of information I can about Multiple Hereditary Osteochondromatosis. I am determined to not be misinformed, or uninformed. I want to know it inside, outside, and then, I want to know more. Needless to say, my brain is feeling a little mushy, but I think I have a handle on things. I am not feeling as overwhelmed as I was a week ago, yet, I seem to be blogging about it at 2 am again…coincidence?
Ok, so fine, I’m still not sleeping so shit hot, but with all this medical mumbo jumbo running through my head it’s nearly impossible.
On my journeys researching on the World Wide Web, I have been looking for online support groups for people who have MHO, I have found 4 now; 3 of which are American, one for children, one run by a man in his 60’s and another that I don’t feel very welcome in…perhaps it’s because I’m Canadian? I also found another one because I have an AMAZING friend Jack in the UK who did some research for me too. The UK group was also unwelcoming, because I wasn’t a resident of the UK, somehow their information wouldn’t be as useful, or the parents and children there feel things differently than the kids here do…I don’t know, or understand. What was intoned, was that I wasn’t welcome. There are NO Canadian support groups. NONE! ZIPPO! ZILCH! ZERO!
Which brings me back full circle to Warrior Mummy. A part of me is wondering how many other Canadian families have been looking for a support group? There are only about 1000 people in the whole country who have this condition, but I’m sure that they have been looking for help, just like I have been. Maybe, I’m the Warrior Mummy, maybe I am the one who should be starting a group? Maybe I need to be a better advocate for Paisley, and other children just like her?
So, now I am going to figure out how to make a webpage. I am going to start an online Canadian support group. By Canadians, for Canadians. I might be the only member, but that’s ok. I don’t know where to start, I don’t know HTML, I barely managed to set this blog up by myself, but I will do this. I will do this for Paisley and for other families who are in the same shoes that I am in.
I will do this because I am going to be: