Mi Life Is An Adventure

Mi crazy, wonderful, beautiful life.

Slammed By The Mail July 9, 2012

Swift Kick To My Brain

I love to get mail most days, other than assorted bills, really, I usually get nothing. It’s sad, but in this day of modern technology the traditional letter has been replaced by email, e-cards, text messages and emoticons.

Today though I got a letter, a letter from Oncology.

As soon as I saw the envelope everything came crashing down. For the last week, other than erratic sleep, I have been able to put the cancer mostly out of my head. I haven’t really had to think much about it, or really talk about it. It’s always there, but it has taken a backseat to what’s happening in the rest of my crazy ass life.

But the letter changed that, I instantly felt nauseous, my head kinda went light, and my hands started to shake. It just brought the cancer and it’s ramifications back to the front of my brain.

I started to think about what it meant; surgery in the near future, 8 weeks of recovery, pain, not being able to hug of lift my girl. Then of course the possibility of finding cancer on my ovaries, or elsewhere while they are in there. I started to think about my aunt who was my age when she was diagnosed, and all the women before me, and then the fear kicks in.

I am terrified of surgery, I am scared of recovery, I know I have amazing, rather AMAZING friends and family who will all be there to help in any way they can, but a part of me still feels very alone in this. I feel like it’s my body that has failed, that if I had chosen to live parts of my life differently I wouldn’t be in this boat. If I was healthier, if I had eaten organic, probiotic, grain fed, vegetarian…blah blah blah…the list in my head goes on for miles.

I wonder who will go with me to the hospital, and who will visit. I worry about who is going to care for Magee when I’m not able to. I worry that she’s just not going to understand, how could she when I can barely grasp it all. Will I be alone when I start puking from the anesthetic (because I always do) or will someone be there to rub my back and bring me some water?

All these what ifs, and things out of my control, a million different variables, and questions. Really there are no answers yet, and some won’t be answered until I’m actually in the situation.

I know I’m going to be ok in my head, I’m just having a hard time convincing my heart of the same.

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Hope Is Better Than Fear July 2, 2012

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.
Jack Layton

Hope is better than Fear, Optimism better than despair.

For a year, longer than the last week; these words have resonated with me.

I am a political junkie, and the quote was written by one of the most influential Canadian politicians of my time. Sadly Jack Layton lost his battle with cancer almost a year ago. During his last days he wrote a letter to all Canadians that ended with the quote:

“My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.”

I have tried to be both hopeful and optimistic this last week, I will not let fear, or anger rule my life; although I have plenty of both.

I am not going to lie, this week has been tough, for many reasons; work, relationship, kiddo, and cancer. Cancer seems to be the things that is at the forefront of it all. It doesn’t seem to matter what I do, it’s just there. It’s not even that I am sad about it all the time, or upset. Often its indifference, but it’s still there.

I know deep down that all of this is going to be ok, I know that I am strong, and healthy otherwise. I know that as sacred as I am that things have spread, they haven’t, I have to believe it. I know that while I have to wait to deal with all this shit, there are so many other women who don’t have the luxury of a few extra days…

I have been trying to put my life into some sort of perspective, which hasn’t been easy when it is all upside down. I’m trying to think of this as just a bump in the road, a blip on the chart. Today it feels like a mountain to climb, not a bump, but tomorrow will be better. It’s when I have time to sit and think, that my head gets the better of me. When I am surrounded by the kids and chaos of daycare I don’t have time to think about much. This was a long weekend up here in Canada, so lots of downtime where my brain has sometimes gotten the better of me. Paisley spent a night at her grandparents, and yesterday I spent the majority of the day asleep in bed. When I wasn’t sleeping, I was trying not to think…kind of a vicious circle.

I have a few amazing friends (you know who you are) that are calling, texting, and checking in. I love them, right now they are the ones helping me to keep my head up. There are others that I thought would be there who in a short time have dropped off the face of the earth…how lovely.

My goal for the next few days, is not to tread water, but to swim. To try and grab life, shake the shit out of it, and live it. I don’t like walking around in this fugue state. I want to see the colours, smell the air, and feel the breeze.

Wish me luck!

 

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.

 

 

 

 

Tired. April 3, 2012

“] I feel like I’m barely holding it together here folks.

My life has been upside down for 7 months, and I’m not sure when the ‘crazy’ will end. I don’t know how much more I have to give. I feel like I am floundering, and failing at pretty much everything.

Let me preface this by saying, I’m not looking for solutions, advice, or pity. I am just a struggling Mama, and I’m doing the best I can with the skills and resources that I have.

Any of my regular readers know that my partner Shaughn has been in school since September, he went back to school to become a personal support worker, his hopes are to gain employment working in palliative care. He is currently also working full-time. Herein lies the problem.

My daughter Paisley is having an even harder time than I am. She is teary, upset, and angry, She doesn’t understand. She sees Shaughn for a grand total of 1 hour in the morning. During that hour it is showers, dressed, breakfast, I can’t help her, she misses her Daddy. She is taking her hurt out on me.

I see Shaughn for about the same amount of time. I might see him for a few minutes at night, but after a 15 hour day he and I are both done. We talk about the bills, the laundry, and the next days agenda. then goodnight.

I feel like I am failing as a mother, partner, daughter, caregiver. I am angry, I am tired. I am so tired. I feel like I am being pulled in 6 different directions, and I can’t find my footing. I have tried for so long, but it just isn’t happening.

I am heading out-of-town for a few days, hopefully some R&R. I need to regroup and refocus. I am excited that Shaughn and P will get some much-needed bonding time. I am sad that I will miss Easter, and my family, but I think I need to look after myself now. I need a change of scenery, I need to escape my 4 walls and just be Christa for a few days.

I know some people have expressed that I am being selfish, I should be with my child and family, and to these people I say ‘Walk a mile in my shoes’. Spend an entire day doing what I do, then tell me you can do it for 8 months, day in and out, without a break. I can tell you now, there are not too many people who can.

So, yes, I am being selfish. I am ok with it. I need it.

So, hopefully after this mini holiday, I will be in a better place to start my blogging regularly again. I will find the motivation to take a few minutes every few days for myself to write.

See y’all on the flip side yo!

 

The Hats We Wear March 4, 2012

So Many Hats, So Little Time

So Many Hats, So Little Time

*I am prefacing this before actually writing this post, a friend of mine and I are both blogging the same topic. We are curious about how each of us will respond to the topic, and what each of our takes is. To read WhoseElliot’s blog post, follow the link at the bottom of the page.*

Daily we are required to wear many hats, some days we wear more hats, or less. Some hats we choose to wear, others are bestowed upon us and we don’t get the choice to remove them. Some hats are out in the open for everyone to see, and others we keep hidden, but they are still there.

For my job, I wear my Childcare hat, (and of course my toque in the winter) I was given my Mummy hat by Paisley, and some of the hats I keep hidden are my survivor hat, and my insecure hat.

Hats can be used to accentuate who we are, we can use them to jazz up an outfit, or put one on and pretend to be someone we aren’t. Often in life, I think the latter is true, We put on a hat hoping to fool people, hoping they won’t see the hidden hats beneath it. What are we afraid of? Acceptance, judgement, anger, grief? We all have our reasons, the point is, they are ours.

I often hide behind my happy hat, people often perceive me as self-confident, assured, and cocksure. Most of the time, I feel the opposite. I feel  insecure, unsure, and I second guess most things (and third guess!).

When I show people my other hats, when I openly discuss how I am feeling, or how something in my past is still affecting me today, people often try to fix me, or to give me advice. When that happens, I automatically put on my happy hat. I hide, I don’t need fixing.

It is interesting that at birth we are given a boy hat or a girl hat. Pink or blue. Those hats will be the first of thousands we wear in a lifetime, from the minute we are born, our heads are covered, letting the world know who we are.

I hope that as I become older, wiser, and more unconcerned, that I can remove some of my hats. I can put them away, and live a life where I don’t feel that I have to hide parts of myself, where I don’t care about what others think, and maybe, I will feel more peace in my life. Until then, I will continue to don each hat daily, I will keep my other hats firmly planted but hidden, waiting for that day when I can let people in.

To read WhoseElliot’s blog on Hats go here: www.whoselliot.wordpress.com

 

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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