Mi Life Is An Adventure

Mi crazy, wonderful, beautiful life.

My Adventure Ended…. April 12, 2012

Going Home Is Hard To Do.

Well, I made it back home unscathed, somewhat rested, and with feelings of mixed sorts.

I was unbelievably excited to see my Paisley. God I missed her. 5 days away was long enough. I missed my girl, her drama, her early waking, her laugh, her excitement, I missed it all. I was so happy when I went in to kiss her at 2 am, she woke up briefly, and smiled, and said “Mummy, I missed you”…melted my heart.

I was excited to see Shaughn, but truthfully, we still haven’t seen each other. We have not connected, I haven’t really told him anything about my trip. He has seen a few pics on Instagram, but really that’s about it. I hate this.

My life seems to have just continued exactly where I left off, I got home, got things ready for work, slept for 4 hours, woke up and had the kids that morning. Nothing has changed. It’s still the same life.

When I left, I was going for a break, which I did get. I spent time doing things I love, I was in the outdoors pretty much everyday, I was able to explore a new city, and be with a wonderful friend. I was able to remember who I was, and where I came from; before I was Mummy, before 5 kids called for me every minute of my 10 hour work day. I was able to laugh, and cry and talk…and talk….and talk. I was able to have real conversations, that weren’t filled with interruptions, or explanations.

I enjoyed doing new things, and hearing new stories about things and places I had never been or seen. It was wonderful to be away.

On Monday, I woke with the weight of the world on my shoulders. I knew my time away was over. I had to go back. Real life was calling my name. I packed and got ready for my trip to Milwaukee. Thankfully it was a 3 hour drive, still time to talk, and laugh. As soon as Miller Park (where the Brewers play) came into view, my stomach dropped. It was really ending. I was going to have to say goodbye. I hate goodbyes. HATE THEM. There was a pretty big line at the train station and we were able to talk a bit more before I boarded.

And then I had to go. My adventure was over. I had to say Good Bye to Elliot, see you in July.

It was a very uneventful ride to Chicago, I snuggled with Paisley’s cow, and just stared out the window. A million things drifted through my head as I watched the world pass out my window.

I finally arrived home to London at 2 am. It was a long trip, I was exhausted. I was looking for my bed before I stepped a foot inside the door.

So, now I wait till July. Elliot will be here for my vacation, and I will show him London, we will be hitting our Pride festival, checking out Toronto and Niagara Falls, campfires, and fun. I can’t wait. Another break. Hopefully by then Shaughn will be more settled in a job, and my life will resemble something of that of a year ago, and not my current crazy.

 

 

 

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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.

 

 
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