Shameless Optimism...



When you are a parent of disability you waffle between shameless optimism of what your child can or could do, and utter despair for what they are unable to do. And at some point in your journey, you hit the brick wall of reality.

I have definitely hit that brick wall of reality and am finding it painful. Sophia is eleven and in grade six. There are moments when she seems like a 'typical' eleven year old girl. Sophia knows all the words to any Selena Gomez song, she wants to wear 'big' girl clothes, paint her toe nails. She wears deodorant, has her first bra and definitely has eleven year old girl emotional break downs!

Sophia loves to help out in the kitchen and goes shopping with me, following the grocery list with determination. We have real conversations about what kind of vegetables we need for dinner and what apples are our favourite. She can choose between cheddar or mozzarella, cold ham or turkey. Sophia loves to read the ingredients in the food we pick out and fervently announces to anyone walking by the percentage of sugar indicated on the side package.

In these moments walking up and down the aisles, I have shameless optimism that my daughter will grow up and develop into an independent, self reliant woman. That she will have completed her education, have a good job, a social life, and share her home with close friends/roommates. That she will manage her own bank account and perhaps, fall in love, have children of her own.

Slam! There is that damn brick wall. OUCH! It hurts...

Sophia is estimated to be about the developmental age of a four year old. I would say it rings true in that her favorite show is still Barney, and she laughs uncontrollably watching Sesame Street on her iPad. We still have to cut up her food, bath her, and there are moments like tonight at dinner, when she really does not understand the context of the conversation. This typically leads to her brothers laughing and Sophia sitting there with indignation, thinking she knows the answer and is right; a blend of the eleven year old girl and a developmentally four year old child.

Sophia is still so very much infantile. Her emotional maturity is that of a two year old and she still requires so much assistance, twenty four hours a day. This is an aside to the comprehensive medical care she requires; the injections every three hours, the round the clock medications, the skin care, the assistance she needs physically to complete so many basic tasks like bathing, dressing, going to bed, even needing assistance walking up and down stairs. *Note, Sophia ended up in emergency the other day when she fell down a flight of stairs and suffered a major concussion when in the care of someone else who didn't hold her hand.

The worry, the angst, the fear of her every day never mind her future, hangs over my head like an anvil.

No one can look into your eyes and assure you everything is going to be ok, be alright. Because the reality, that friggen brick wall is right there in front of you. You try to blast your way through, ram it over and over, try to climb it even. And time and time again, you are met with the cold hard truth that when you have a child, are a parent of disability, that there just may be a line in the sand...that the wall isn't going to move. It is there to stay.

That isn't to say you can't make a wonderful garden around it, that you can't create beautiful graffiti on it's cold grey. That others can't come to the wall and sit and enjoy it with you, your child. Because you can...and for your own emotional well being, and for the quality of life of your child, you need to.

Helen Keller said, "I seldom think of my limitations, and they never make me sad. Perhaps there is a touch of yearning at times; but it is vague, like the breeze among flowers."

It is something I have yet to learn as a parent of disability; to only yearn for what Sophia can do, will do. And not think of limitations, not feel sad. For me, that breeze comes in wind storms, still.

Yet, at the end of the day when I am getting Sophia ready for bed and she tells me exactly how many days are left before a special occasion, or in the morning when she proclaims as usual, that it is going to be a sunny day because she can see that one tiny crack in the clouds...that storm settles into a breeze and I know I am among a flower. It feeds my shameless optimism.












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Sticks and stones make break my bones...


But words can never hurt me.

I used to chant that when I was younger any time I was being teased or bullied, or one of my brother's was being, well, brotherly. It is something we most often associate with childhood and children.

Lately, it has appeared in my adult life and in particular, my business life. I have found myself quite regularly reciting this saying in my head while dealing with some sort of conflict or another.

Naive as I am, I really truly believed that even in business, people would be nice, respectful, kind to one another. I knew there would be conflict, such is the nature of life. However, I never really thought that maliciousness and down right dirty play would be found within a business community, especially a business community that specifically deals with social change and nonprofit. But, it does...

This year, in particular, I have had a few experiences that have left a sour taste in my mouth and have me reflecting on if I could have done anything differently and why I ended up in the situations I did. And naturally, wanting to ensure I would not repeat myself.

My first a-ha moment came when I asked on my Facebook page how do you weed the good ones from the not so good ones. Vanessa LeBourdais from DreamRider Theatre eloquently answered, 'intuition'.

Eileen Caddy says "cease trying to work everything out in your minds. It will get you nowhere. Live by intuition and inspiration and let your whole life be Revelation."

I have to admit, looking back, my intuition was definitely telling me something was not quite right, or to pay attention, do more investigation. But in typical martyrdom, something most social entrepreneurs suffer from, I ran right into the situation full steam.

The other thing I realize is that ego plays such a part of our lives and even more so in business. Darren L. Johnson, coach and author of Letting Go of Stuff, says "anytime there is a struggle between doing what is actually right and doing what seems right, then your ego is interfering with your decision." Wow, how true is that? I have experienced this myself a lot and can now keep check when I am doubting what 'seems' right versus what is 'actually' right.


According to Evan Carmichael, a business analyst, "53% of business people estimate ego costs their company 6 to 15 percent. 20% of business people say this cost ranges from 16 to 20 percent." The costs of ego are high.

Don't get me wrong, I believe strongly we need ego and I see in my thirteen year old son a healthy dose of ego that propels him to achieve academically and in sports.

Evan has three keys to developing a balanced ego and I agree completely and have even been using one of the terms, humility, with my children to keep their egos in check.
  1. Humility
  2. Curiosity
  3. Veracity
The third and last thing that will help me and it is something that again, came from the wisdom of Vanessa, is forgiveness. That though conflicts may arise, intuition may be muted, egos may lack humility, in the end, forgiveness reigns. It is a pivotal moment when you can forgive someone who has wronged you, real or perceived. It is definitely something I am not perfect at and probably the most difficult part of my own journey, yet, recognize it is there and exists for purpose.

So while sticks and stones may break my bones and words can never hurt me, they do...and they will. And I will try and keep the words of William Wordsworth in mind as I move along this journey, "faith is a passionate intuition". Or for you other 80's people, the words of George Michaels may resonate, "you just got to have faith, faith, faith".

I have faith that through listening to my intuition, keeping my own ego in check and learning forgiveness, life will be far more satisfying and successful both personally and professionally.






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Global Currents evolves into Full Web Development House


Press Release: Friday, November 5th, 2011

Global Currents evolves into Full Web Development House:

Global Currents, the leader in web-based fundraising solutions, announces its evolution into Full Web Development and Support. Over the course of the last two years, we have found our clients requirements have changed in that organizations, both not for profit and for profit, are looking for web development that both informs and engages their constituents. This requires a more robust IT team with a significant acumen for complexity and the ability to provide ongoing support.

This means, in addition to continuing to provide our full suite of fundraising tools to compliment your existing site, we now offer a full spectrum of web development and support. Your website is the gateway to your organization. Many times it will be the first step a potential donor takes to find out more about your cause; or it will be how an engaged citizen will learn how to get involved. Most importantly, it can be the tool that helps you fulfill your mission.


Development is only half the story; how you maintain, grown and support your existing framework is equally as important in your technology plan, and a crucial part of what it means to have a successful website. There is no such thing as 'set it and forget it' when it comes to your website and Global Currents has the support systems to help you get the most out of your investment.

While we continue to partner and collaborate with the many skilled web developers and designers in the community, we have internalized the majority of the process to provide more cost effective and efficient service.

We encourage you to visit our website, www.globalcurrents.org, to meet our growing team. In particular, Sajeev Kanesanathan, who has been with us for the past four years, the last two as our Chief Technology Officer. Sajeev brings comprehensive experience in the ecom world and has a penchant for developing programs that require complexity and customization.

We look forward to working within your budgets to provide what we know to be exceptional web development and ongoing support through an extraordinary team who understand the unique challenges of not for profits and the charitable community.

Contact us today for all your web development needs.


Bev
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Super Size my Fat Head

I have been struggling with my weight now for probably close to five years. I have gone through this before; once pre puberty and again after each pregnancy, three so far. Previously, all I needed was a quick fix of exercise and making better choices of what I put between my lips. This time around, at 41, it is a struggle, a huge, big, miserable struggle.

In my world of social change I come across a lot of do good'er vegetarians, healthy eating experts, exercise gurus and the raw diet prophets. It can all be incredibly daunting and down right confusing. Who do you believe? What regime do you follow? What IS best for your body and overall longevity?

I decided to do my own research. As a result, I saw Super Size Me, the 2004 independent documentary film by Morgan Spurlock. Morgan's experiment was to eat McDonald's and only McDonald's for 30 days and mimic the daily physical activity of an average American. For those of you who haven't seen it, you can guess that by the end of 30 days, Spurlock gained excessive weight, his health was compromised, he had high cholesterol and psychologically he was feeling depressed and withdrawn.

Ok, so stay away from fast food, McDonald's. We have all heard for the past 30 years to stay away from high fat and drink skim milk, avoid anything with fat in it. Tick.

Well, then along comes Fat Head, another independent film that is the anti thesis to Super Size Me. Tom Naughton's comedic documentary argues against Spurlock's experiment claiming the numbers just 'don't add up'. Naughton even goes as far as to call the 'lipid hypothesis' a crock of bologna.

So, high cholesterol doesn't cause heart disease and eating fat is actually good for you? Studies have shown that to be true. Check out Dr. Malcolm Kendrick's research if you don't believe me. There are even suggestions that the ADHD epidemic is because we have deprived our children of the necessary fat they need for brain development. Our brain is, you guessed it, fat!

It gets even more complicated or informative, depending on where you are standing. I highly recommend you watch Dr. Robert H. Lustig's talk Sugar: The Bitter Truth. Lustig indicates that the global obesity epidemic is directly linked to our over consumption of fructose and under ingestion of fiber. His presentation is fascinating and even debunks the standard equation of calories in (consumption) versus calories out (exercise) results in weight loss. Oh my, Jillian and Bob must be rolling their eyes!!

You can appreciate why I am somewhat confused. There is so much information out there, all from supposedly reputable sources, all supposedly experts in their field.

My good friend and someone I admire a lot, Tricia Sedgwick, from Seeds of Plenty and The World in a Garden, has been a tremendous support to my family and I. She is a nutritionist and a gardener. She educates adults and children alike on the benefits of healthy eating predominantly through growing your own food. Thanks to Tricia I had a bumper crop of cherry tomatoes, zucchini and lettuce this past summer.

Tricia has been instrumental in my personal learning growth of harmful and helpful foods. Initially, I ended up with very empty cupboards and fridge thanks to her! I learned that guava syrup is a natural sweetener, that olive oil needs to be stored in a dark bottle, and that even our packaged herbs and spices are processed in ways that are not healthy. Do you realize that any house built before 1975 probably has no pantry? Reason being, is we never used to eat so much packaged and processed foods. Have you seen the pantries we have in new houses? They are bigger than the size of our fridge.

My take away from my initial research:

  • Fresh is good. The fresher your food, the less hands that have touched it, the better.

  • Fat isn't necessarily bad for you. Our body and our ancestry have needed fat in our diets since the beginning of time and it isn't necessarily the devil.

  • Fructose IS bad and the devil. Stay away from anything that has fructose in it, which is pretty much most packaged foods, even breads. Try and read the ingredients and again, fresher the better.

  • Find an 'expert' you trust, hopefully someone you know and short of that, contact my friend, Tricia. She will give you the goods on anything you have to ask regarding food, how it is packaged, where it comes from and even better, show you how to grow or make it yourself.

My next stage? Exercise and our bodies. Can't wait!

Stay tuned!



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How do you do it? Defining 'it'



I have written before about the question that I get asked a lot in reference to running a business, parenting three children, tending to a home and of course, caring for a child with special needs. And I am sure there are many of you that relate when asked 'how do you do it?'. However, I have to wonder if anyone really knows what 'it' is?

'It' for each one of us parenting, or tending to someone who has any kind of need is so vastly different. Caring for an aging parent, is different than caring for yourself when you are sick, and is different still when caring for a child who has a need. Our 'its' are all different, unique to our own circumstances. And none really less or more, just different.

I thought I would share what my 'it' is tending to a child with a life limiting illness. Some of the pictures I am about to share may be disturbing, or perhaps, disrupting of one's perspective of my 'it'.

Our day begins at 5am, when I am up giving Sophia an injection. Keep in mind, these injections occur every three hours, around the clock. So in theory, I was up at 2am as well.

At 5am after Sophia's shot, I tend to go back to bed but most mornings lie there semi awake, going through the task list in my head. By 6:30am I am wide awake and the morning hurricane of three children and working parents begins.

For Sophia, herself, her starting gate begins at 7:00am. I get her up, or at least, try to wake her up with kisses and good mornings, to which she will either respond by putting the blankets back over her head or exclaiming as she looks out the window, "Look, Mamma, it is going to be a sunny day!", even if it is pouring with rain.

I wash Sophia up either by giving her a quick rinse in the shower, or with a wash cloth. Sophia is not 'dry' over night and requires the use of pullups and tenas. So, it is important to get her a fresh start.

Typically, by 7:30am, we can count on one of our nurses to knock on our front door and walk in. There was a time I used to worry about my morning hair, or the state of my house and would even get myself up, showered and dressed before they came. I don't do that as much anymore.

Our nurses prep all of Sophia's morning meds and help make her breakfast. They feed her in between packing up her lunch and snacks, meds, and extra formula for her day at school.

Sophia is excited about school and is always eager to get through the morning tasks and routines. She ends her pre school time hooked up to a mask with medication in it for her little lungs then brushes her teeth. She then waits anxiously by the front door for the school bus to come and pick her up. My UK nephews affectionately call it 'the block of cheese'.

Most days, Sophia is able to go to school where she enjoys learning, reading, sharing time with her friends and daily activities in the community. She gets tired and by the time she gets home and is dropped off by the cheese, we know we have a few good hours left before she crashes and burns.

Throughout her day in school, her little fingers get poked to test her blood sugar before every shot and meal or snack. She is constantly hooked up to her backpack which carries a feeding pump and some souped up formula mixture to keep her sugars stable. Toss in those three hour shots and six hour pain meds and she is doing more than reading, writing and arithmetic.

At home, we have the usual dinner time chatter a family of five can create. A lot of yacking, some 'eewww, I don't want to eat this' and a good round of 'is there any more?'. Ahhh, got to love boys.

By the time 6:30pm comes around, Sophia is exhausted. Though, if you ask her, she will deny it by saying "I'm not tired!" and forcibly raise her eyebrows and open her eyes wide. It has become a bit of a joke now.

And, like the morning routine, it is compiled of syringes, needles, masks, whirls, gigs, creams, gauzes, and of course, plenty of hugs and kisses.

In the course of one day, Sophia requires 8 injections, that is 2,920 needles a year, ten syringes of medication, 3,650 annually and between 8 to 10 finger pokes a day, again no less than 3,650 finger pokes per year. And plus some, should she become sick or require even the simplest of eye creams, or ear drops, antibiotics. Never mind the fact twice a week we have to change the needle catheter in her leg, and every twelve weeks the g tube in her stomach. Oh, and every ten days, the batteries in her hearing aides.

There is more, of course. 365 tenas, 600 2x2 gauzes, 4,200 test strips, 60 feeding bags, 45 feeding tube adapters, 75 insuflon catheters, 364 cans of pediasure, 72 cans of polycose...need I go on? I hope if I every forget a meeting or am running behind, or am late giving you something, you can cut me just a little slack?

So, when you next ask me how do you do 'it'. You have a slight inside loop on just what that 'it' is and all it entails not just for me, but for Sophia. And that is how I do 'it', because of this amazing little girl who wakes up in the morning and exclaims, even on the darkest days, 'Look, Mamma, it is going to be a sunny day!'.




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