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.

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.