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Mis-shapes, mistakes, misfits
“And bad mistakes, I’ve made a few. I’ve had my share of sand kicked in my face, but I’ve come through….” ~Freddie Mercury / Queen I am not sure I can trust anyone who says they don’t make mistakes. Really. Because you know they make them, they just either pin their mistakes on other people, sweep them under the rug in fear, or they are just too vain to admit to them (Everyone knows an, “I’m perfect, I don’t make mistakes” person). The end result for them is that they never...
read moreTime sneaks up on you
“Tired of lying in the sunshine, staying home to watch the rain… you are young and life is long, and there is time to kill today.” Time by Pink Floyd I think we can all agree upon needing an escape into the ethereal world of Pink Floyd these days. Though, to be fair, I wouldn’t quite recommend “breathing in the air” unless you happen to be certain that the air is, in-fact, safe. So sit back, and get cozy. It’s been a while. While our soundtrack ebbs and flows through the beaten up speakers in our...
read moreStop!
Stop! Stand there where you are, before you go too far..” – Andy Bell and Vince Clarke Ever hear a voice in your head telling you to “Stop!”? Sometimes this voice calls to me too. Sometimes it’s Andy Bell’s gorgeous voice, sometimes it’s my mother’s judgy voice and sometimes it sounds like a combination of Andy Bell and my own strangled cat voice. Yes, sometimes you need to Stop! Or pause, or take a break or if you can’t do any of those, take a deep breath. You’re alive, you’re...
read moreThere are Binoo’s everywhere!
Happy Birthday to our dear sweet Pepper! This year, Miss Pepper was treated to a very special birthday surprise. Her favourite characters, Toopy and Binoo leapt off the screen and transformed from cartoon heroes to puppet show entertainers! Pepper had a Toopy and Binoo puppet show visit at her school! To say this girl lit up like a Christmas tree is quite the understatement. She was absolutely glowing! Accompanied by her big brother and her classmates, they all congregated in the school’s library to watch this very special birthday...
read moreBe Our Guest
Staying in the hospital is nothing like staying in a castle, even though the care is sometimes just as attentive. Our little beauty had a recent emergency trip to the hospital, which required a transfer to that magical children’s hospital down the highway. It was frightening, full of adrenaline, and it was enchanting. We were their guests. What started off as a very early morning seizure, gradually rolled into another, and then another, and then rescue medication with a plan to drive to the hospital. It quickly rolled into another...
read moreClosing Time
“Sir, if you won’t be needing me, I’ll close down for a while.” – C3PO Interesting that a futuristic gilded space butler can take some time to shut down and recharge, but us so-called “super-moms” feel we cannot. When was the last time you said to someone, if you’ll not be needing me, I’ll shut down for a while? If you are anything like me, probably never. The fact of the matter is, we really don’t ever shut down. Even when we try to shut out the noise and chaos around us, we are...
read moreDear Santa
We didn’t want Pepper to be left out of writing a letter to Santa this year so we decided we would write one to him on her behalf. Big brother asks Santa for a miracle for Pepper every year. This year, it was her turn to ask: Dear Santa, This Christmas I am at a new school. I have been a very good girl this year, and here is a list of the things I would like for Christmas: Dear Santa: If you could make my legs do what I ask, I could run to my friends; it wouldn’t be such a task. I could dance in the classroom and run with my mates, I...
read moresome misunderstanding
Yes, this must be some misunderstanding. No, it’s not a mistake. Pepper is turning 5 years old in a couple of weeks. No, Pepper is not a baby. Though I can see the reason for confusion. Pepper is not talking. Pepper is not walking. She is not self feeding, or self toileting or pointing, or waving. The wheelchair Pepper is using looks similar to a stroller, but it is not a stroller. It is a wheelchair. It can tilt back. For naps. For seizures. For recovery. It is not a stroller. Pepper is not a baby. But she is my baby. Not A baby, but...
read moreChanges
Turn and face the strange…. ch ch chaaaaaaangesssss…. (credits to the most awesome David Bowie for his inspiring lyrics, lifting us all to face the Changes) And face them, we have. And face them, we continue to do. In November of last year, we purchased a new home! We’re in a house! Less stairs, less struggle to get down the stairs carrying a 40 lb sack of potatoes in the early morning pre-coffee hours… And as for future challenges, we are equipped to be able to install a lift to assist us with the challenges of...
read moreBe brave little soldier
As we start another year off with a series of seizures, I shall keep the mantra, “Be brave little soldier” in my head. Last year was a year of challenges and tested my mettle more than any other I can remember. Even still, my head swims with worry, and nervous anticipation for the next set of challenges; the next mountain to climb. This year, I will remind myself over and again to be brave. Over the course of the past few months, we advocated for our little girl within the school system so that she could attend kindergarten with her peers,...
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