She Did It. October 9, 2011

This is just a quick post. No picture today, because I am a dolt and was so wrapped up in the moment I forgot to take one.

My girl rode her trike to the store and back. She pedalled the whole way. I am so incredibly proud.

My kid rocks. Just sayin’.

Gratitude August 28, 2011

I need to remember to be grateful.

As I sit here by myself, which as anyone who knows me is a rare occurence; I am again reminded that I need to re-focus my thoughts and actions.

I have been quite consumed of late. I have been worried, sad, scared. I have been wrapping my brain around little more than what has been going on within our house. I have been a bad friend, a not so hot wife, and I would not win ‘Mother Of The Year’ based on the last months performance.

I am sure many, many people go through the same thing when they get bad news.  I think it’s natural to turn inward, to want to ignore the rest of the world. Work, friends and family seems too hard to handle, a trip to the park almost like climbing Everest. We do it because we have to. We work to earn money, we cook dinner because the family has to eat, and we go to the park just incase we ARE in the running for Mother Of The Year; but we sure as hell don’t want to.

This is the bubble I have been in for a month. I have been living life by rote. Doing what I need to do, but certainly not living. To be honest, I’m not sure anyone else even noticed. I did what I had to do, what I needed to do. I also avoided the things that I love. My friends took a backseat, I havent been as dedicated to the gym, and my eating hasn’t been nearly as clean as it has been. I was so wrapped up in the future, I forgot to live for today.

I forgot the reason I was going to the gym was to better myself, to set a good example for Paisley. I forgot, that I needed friends, and that right now, I needed them more than ever. I didn’t try to be  a great wife, knowing that Shaughn was feeling much the same, and that he would of course forgive me. I have been so worried about the ‘what if’s’.

A friend, a true friend, and she knows who she is has given me the kick in the ass that I needed. That’s how I know she’s the real deal. She said that she realises that life is not so great right now, but that it’s not a good enough reason to stop the things that are important to me.  Now, when she said it, she wasn’t nearly as nice. She’s pretty blunt, and doesn’t mince words. She calls a stone a stone.

So, after the talk, I began to take stock. I looked at my life from a different angle. I have been focussing on what really matters. The here and now. I need to be grateful for the wonderful life I have. My wonderful family, and friends. I have to rededicate myself to continuing to better myself physically. I have to stop worrying about what may, or may not happen.

I live this beautiful life, with people who care about me, and how I could be so self-absorbed to not notice or care, I don’t know. I’m ashamed to be honest.

So now, I am hopefully back. I feel back. I feel better, and whole. I have accepted that there will be bumps in the road, but I will have to deal with them as they come, I can’t live waiting for the other shoe to drop.

Today, I am grateful for life; mine, their’s, and yours.

Warrior Mummy August 14, 2011

I need to be strong for her, I need to find support for us both.

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.

Warrior Mummy.

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:

Warrior Mummy.

1 in 50,000 August 7, 2011

This football stadium holds 50,000 people. Only one person in the crowd will have MHO.

Those are the odds that someone will be born with the genetic disorder Multiple Hereditary Osteochondromatosis or MHO for short.

MHO is caused by abnormalities in the EXT 1 and EXT 2 genes, resulting in benign tumours that grow on the long bones of children and teenagers, resulting in disfigurement and pain.

I just found out that my daughter has it.

Oh yeah, and as an adult, those benign tumours can actually turn into cancer.

I refuse to cry, I am trying really, really hard to not be pissed off, and I am trying to focus on the here and now. There is no room in my life for a pity party.

But right now, at 2 am on Saturday night, I am feeling alone, scared, angry, sad, and definitely not hopeful.

What does this mean for my beautiful daughter? She already has a wonky shoulder, we can see and feel the tumours on her knees and ribs. How are her peers going to treat her as they become more noticeable?  Are adults going to stare at her? Will people laugh and tease her? Will she come home from school in tears?

How do I prepare myself for the inevitable, especially when there isn’t much help, or hope out there?

I refuse to cry.