I won't get discouraged.

Or at least I'm attempting to remain positive.  I know there are those who want to help.  There are been higher mountains to climb. But financial burdens are just that....burdens, and when they glaringly effect our children, how can we remain positive in the face of such adversity?

I can doooo it! :)

So as I'm hoping some have noticed, I have taken down the "Donate" icon from paypal.  There are a few avenues of funding that we are going to explore in the next little while that does not include direct donations.

First and foremost we need to pay for Emmett's KAFO's and a walker for him, I'm hoping we can seek funding from Shriners for this, and pay the remainder out of pocket (if not too much).  Then Easter Seals NS offers a program for children who require equipment for mobility, etc.  These forms will be filled out, and sent before I know how much money we will need to complete the transactions.

Affirmation

I guess I should add....

In February Emmett and I, along with his Early Interventionist will be taking a trip to the IWK for a day clinic. During this clinic we will be discussing wheelchairs, Knee Ankle Foot Orthosis, and a walker. When I know more I will post more.

I started this page to get a head start on fundraising for the Wheelchair, etc.  In the future I will be looking into other fundraising measures as well. :)

Have a great day!
Charmaine, John, Emmett and Liam

Blessed

I feel incredibly lucky, incredibly blessed.  I have two boys, two wonderful glowing alive boys. 
So few people actually know how afraid I am. How weak I actually feel.  Us mothers are our own worst enemy. 
I am so worried all the time about Emmett, about his shunt malfunctioning again, about his kidneys failing.  I know I am not supposed to fear what may or may not happen. It is so hard not to. I put on a happy face, and I am strong for Emmett and Liam. But at the end of the day, when all else is said and done, I lay awake, waiting for the other shoe to drop.

There is a balance in our lives. Like a set of scales, always balanced: a red apple on one side, brown on the other. It is arrogant to believe otherwise.

Emmett is doing amazing. I find it hard to revel in this, if I smile, will it all crumble?  He is using a walker, with AFO's. Aside from a couple of UTI's and the most recent Bladder infection is doing remarkable.

but....but.....I want to live each day at a time. I want to be the glowing proud mother who doesn't stumble over her words.  Someone for the boys to look up to.  I am weak.

Get Me Through December

Shakey Hands

I often wonder if it is ok to be this stressed, tired.   I am taking this as my opportunity to vent.  I think I'm frequently misunderstood, ever since I had Emmett and Liam I have been more and more aware of what I am saying, and increasingly paranoid about what others think of me. 

I used to be confident in my decisions, now, not so much. I think that comes with being a mother of a Special Needs child.  People keep throwing about words like mother's intuition. But what does that really mean?  We took Emmett seriously every time he said his head hurt (he'd point to the shunt), and every time he'd end up getting yet another MRI, with results stating everything was clear in his shunt.

He uses his shunt as a crutch, and he's only 3.5 years old. How are we supposed to correct this? I told him the story of the boy who cried wolf.  I think he paid little attention.  As a parent, I was paranoid, scared that his shunt was blocked again.  But every time he does this, we end up wasting the Doctors valuable time, and the hospitals resources because our son has figured out that if he pretends he has head pain, he will get more attention.

Meanwhile, our younger son, is rebelling. 2.5 years of age, and uses his skull as a hammer to get attention, or what he wants, or release.  He's stressed out, quick-tempered, and heading towards boxer brain.  The competition between the two for my attention is wearing me thin.

How do I fix it?