Wednesday, March 5, 2014

Spread the Word to End the Word

Retarded. A word often tossed around carelessly and hurtfully. Many are ignorant to the fact that it is a medical term ... not an insult. Today is "Spread the Word to End the Word day". Will you pledge to eradicate this word from your vocabulary today, and speak out to encourage others to do the same? Do it in honor of Aziza.

Saturday, January 11, 2014

Lessons From Aziza - Lesson #1

I have decided to release a series of life lessons that I learned from the Warrior Princess in the few short years that she was with us. I hope that you enjoy them :)

Lesson #1 ... Be Yourself!


Friday, January 3, 2014

I'm a Twit

I have been so neglectful with my blog lately ... Many apologies. I am trying to figure out the future direction of this blog and have come to no real decision. However, for those blog readers that are interested, I have recently joined Twitter. You can follow me at @discordiaconcor

Hope to see you there!



Wednesday, November 20, 2013

Wordless Wednesday - The Handknit Sweater Repost

This photo was originally posted here about a year ago. If I could turn back time I would never make Aziza suffer through another handknit sweater ... even if her pout was the cutest ever!



Thursday, November 14, 2013

The Wait

Aziza was four years old and had waited her whole life for a family when this photo was taken. This photo was taken by me on one of my visits with her during those early days ... she was almost home. Her wait was over. We were her family and she was ours. The magic that would unfold as this tiny girl emerged from her shell was a real life fairy tale. I hardly recognize the scared, withdrawn and isolated baby in this photo. How she amazed us all with her incredible resilience.

Wednesday, November 6, 2013

Almost Wordless Wednesday - Along Came Aziza

In November 2012, Samantha was pleased that she had set all the figures into Aziza's dollhouse for her. And then, along came Aziza. She was very unhappy that the dollhouse was on her "stage". And so ... she hurled it.


Tuesday, November 5, 2013

Eleven Long Months and Cause of Death

It has been eleven miserable months without Aziza. Eleven. So you can imagine my surprise when I received a call from the coroner a couple of weeks ago. The coroner let me know that the autopsy report was finally ready and that a cause of death had been officially declared. Did I mention it had been eleven months?!? For eleven months if you had asked me what Aziza had died from I would have told you that it was likely a bowel obstruction and possible perforation. But I didn't really know.

When a child arrives in a hospital with rather mild symptoms but who's health deteriorates so rapidly and they die within thirty hours of arrival in the ER, the protocol is to perform a very thorough autopsy. This is what happened with Aziza. After her death she was released into the care of the coroner. The coroner had called me when the autopsy was completed on Dec 7th and told me that although the report would take months to complete, her theory was that Aziza's sudden illness may have been a result of complications arising from the tumor resection that she had fifteen months prior.

Well, the cause of death is now official and it was not quite as simple as a bowel obstruction. Aziza officially died of an acute hemmoragic infarction of the stomach and bowel resulting in hypoxic injury to multiple organs and shock. What exactly does this mean?

First a bit of background ... Aziza's tumor had been very large and involved. It was close to her heart, stuck to her liver and curved her spine. More importantly, it had encapsulated some major arteries. In order to remove the tumor the surgeon had to carefully cut it away from very delicate but very major arteries. The risk of nicking an artery was huge and one of the greatest concerns during surgery as it would have resulted in hard to control, profuse bleeding. We were I relieved that this did not happen and she got though the surgery well.

Ok, so what does acute hemmoragic infarction of the stomach and small bowel mean? Essentially what was found upon careful examination was a very very obvious cause of death. Scar tissue had built up along these major arteries and eventually, on Dec 4th, cut off the blood supply to Aziza's stomach and bowel. These organs had unbeknownst to any of us been slowly dying as the blood supply grew less and less as this scar tissue built up along these arteries, invisible to anyone. Eventually the blood supply just stopped. It affected multiple organs, and Aziza went into shock. She could not be saved :(

The hard to understand part for everyone is how could Aziza have seemed so incredibly well? She had been at school the day before she got sick ... She had been playful and eating leading up to her sudden illness Dec 4th.  She had smiled at the triage nurse who determined that Aziza was a non urgent patient and sent us to wait in a general waiting area to wait for hours before seeing a doctor.  Aziza seemed only mildly ill right up until the first code blue was called.  It's very very hard to accept.

And so, eleven months later I finally have an answer to what killed my daughter. And it's a horrible answer... But it does bring some closure to that burning question. Eleven long months, and she is missed as much today as that first long day without her.

The following photos are of Aziza a few weeks before she died. Always smiling and goofy. I think our dog knew long before any of us that Aziza's body was failing. She had always kept her distance from Aziza ( who was none too gentle with our tiny dog), but during those final few weeks Bella became very protective of her and often slept right at her head. At the time I just thought it was cute:





Thursday, October 31, 2013

A "Super" Hallowe'en Tribute to Aziza

Thank you to my many blog followers who sent in photos of their little Superheroes.  As you know, Aziza was Supergirl last Hallowe'en and facing this Hallowe'en without her is very difficult.  However, it has been made easier by the beautiful photos that arrived in my inbox in the days leading up to Hallowe'en.  It was so wonderfully touching to see people from all over North America and the United Kingdom wanting to honor Aziza.  The following photos are a representation of children with Down Syndrome, children with Autism, children who have been adopted and their family, friends and allies.  Everyday Heroes.

Ally as Supergirl!
New Jersey, USA
 
Super Brady!
Ontario, Canada


Kennedy as Batgirl!
Colorado, USA
 
 
Olive as Wonder Woman
Ontario, Canada
 
 
Tyler as Batman!
Manitoba, Canada
 
 
Amber as Supergirl!
Michigan, USA
 
 
Kameron as Batman!
Colorado, USA
 
 
Brakayla as Supergirl!
Indiana, USA
 
 
Jonathan as Batman!
Ontario, Canada
 
 
Brynn as Supergirl!
Colorado, USA
 
 
Keeghan as Robin!
Colorado, USA
 
 
Sydney as Supergirl!
Texas, USA
 
 
Peyton as Batman & Gavin as Spiderman
Pennsylvania, USA
 
 
Nathan as Superman!
 Ontario, Canada
 
 
Camden as Captain America!
Washington, USA
 
 
Anton as Superman!
Ontario, Canada
 
 
Lexi as Tinkerbell & Lila as Supergirl!
Colorado, USA
 
 
Wil as Batman!
Ontario, Canada
 
 
Super Jackson!
Louisiana, USA
 
 
Mackenzie as Batman!
London, UK
 
 
Max as Raphael the TMNT
New Jersey, USA
 
 
Kassidy as Catwoman!
Colorado, USA
 
 
Super Zak!
Manitoba, Canada
 
 
Mackenzie as Batgirl!
Ontario, Canada
 
 
Gabriel as Batman!
Texas, USA
 
 
Lona as Supergirl!
California, USA
 
 
Lona's Super Family!
California, USA
 
 
Natasha & Andy's Delilah as Spiderdog!
Ontario, Canada
 
 
Natasha & Andy's Jack 'o Lantern :)
 
 
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Sunday, October 20, 2013

Growing Up "Super"

As a mother, I have always been amazed with and in awe of my children.  My children are/were not typical children... their lives have been extraordinary.  They experienced challenges in childhood that no child should ever have to experience.  I have always wondered where children so small find the courage and strength necessary to move beyond such experiences.  The world knows that my sweet Aziza faced medical complications in her short life that nobody could believe that she survived.  A lesser known fact is that she also endured years of neglect prior to being adopted, resulting in countless social, medical and developmental challenges.  But like a true hero she fought back against everything with all that she had.  And so, last Hallowe'en we knew we had found the perfect costume for her.  Aziza was our Supergirl:

 
But it's a funny thing ... we have a history of Supergirls in our family.  I had forgotten that Aziza's sister, Samantha, had also revealed her secret identity one Hallowe'en five years prior.  Like her little sister, Samantha also grew up defying the odds stacked against her.  Although Samantha's story will remain private, I can tell you that despite significant challenges in childhood, she drew upon her strength of character and thrived.  She never allowed others to define what her capabilities were.  She never allowed medical or developmental diagnoses stand in the way of her dreams and goals.  No matter what the circumstance, Samantha always faces each day full of grace and a wisdom beyond her years.  At the age of fifteen she has already achieved so many great things in life.  But -  I always knew she would.  When Samantha was nine years old she also wore the most perfect costume ...my Supergirl.
 
 
Today we went out to purchase our Hallowe'en costumes for this year.  Although part of me just wants to hide on that day and pretend it isn't actually happening without Aziza -  the other part of me knows that we need to honor our Warrior Princess.  And so, in the name of tradition, and in memory of our littlest Supergirl, our entire family will be "Super" this October 31st.  Even the dog.  We will not hide from the world on this day ... we will all show our Super identities, dress up, hand out treats and eat candy.   
 
Note:
I will be posting photos of us in our Supergirl costumes when the time comes ... if you also have a child dressing up as Supergirl/Superboy ... or any other hero ... and want their photo to appear on our blog in honor of Aziza, please email me at Discordia_concors2000@yahoo.ca 


Sunday, September 29, 2013

Trail Talk

Autumn is my favorite season, but we have not been having very autumn-like weather around here.  While most people may enjoy the extended summer we are having, I long for the crisp breezes of Fall.  The hiking trails around here are even more beautiful once the leaves start changing and falling.  With this warm weather it feels as though that will never happen!
Yesterday I headed out along one of those trails with one of Aziza's former therapists.  I love that Aziza's therapists have kept in contact with me over the past 9 months ... they truly care about our family and loved my girl.  It was nice to meet up at Aziza's favorite park along the river and walk a trail that neither of us was familiar with.  We chatted about Aziza (of course), family, work and life in general.  Our most important conversation centered around doing what makes us happy in life.  It was a relief to speak with someone else who understands that happiness is not a constant and that what makes one happy in life is fluid. (I will likely dedicate an entire blog post to this one day soon.)
After a good talk and climbing more than our fill of hills along the path, we called it a day and headed back towards the park - and of course ended up at Starbucks.  I think that along with good friends, Starbucks might be on my list of things that make me happy these days ;)  These photos were taken of Aziza during a Fall hike along one of the area paths ... don't worry, the tracks were not being used!
People take different roads seeking fulfillment and happiness.  Just because they're not on your road doesn't mean they've gotten lost. 
 H. Jackson Brown





Saturday, September 28, 2013

Anam Cara

It seems that Fridays are the days that I crave the company of my friends the most.  I haven't yet figured out why this is, but it's the perfect day for coffee dates with those who I love the most.  Sitting in Starbucks sipping chai tea and spilling my heart out to those closest to me is better than any therapy out there!  Trusting someone with my heart and knowing that she is listening without judgement is a much needed way to end the week.  It's also a time to leisurely chat about the lighter things in life and enjoy some much needed laughs.  Yesterday was a day spent sitting with the one who has known me forever ... the one who held my hand as we watched Aziza slip away on December 5th ... the one who has also struggled so much since witnessing Aziza's shockingly traumatic death.  Through the good times and the bad ... we will weather this journey together.  I love you my anam cara ...

Friday, September 20, 2013

Unanswered Questions, 80's Flashback and Good Friends

Today started off as some do ... incredibly sad.  Today was a day set aside to complete a few tasks that have been put off forever, including packing up a few more of Aziza's toys.  Certainly not all of the remaining toys, but a few that were not as special as the others.  It is so strange to be packing and labelling boxes not knowing what their future purpose might be.  Will they ever be used by our family again?  Will it be in this generation or in the next?  These are questions that I have no answers to right now.  And so with much apprehension, a heavy heart and unanswered questions these loved toys were packed up for storage.  It was just two boxes, but it was enough to break my heart even further. 

After a good cry I knew I needed to get out of the house.  So, I headed out to complete other tasks that were not nearly as heart wrenching.  It was a mission for a Beaver Canoe Hoodie (uh ... yes, my Canadian friends-that's right) and necessities for Samantha's swimming classes that start tonight.  I then drove around mindlessly for a while before facing home again.

Sam and I headed out after school to run a few more errands.  Those who know me likely know that when I am driving I love to listen to music ... loudly.  Well, today the radio had to be seriously cranked up for Samantha and I when Young MC came on.  How Aziza loved when I cranked up the radio ... it always resulted in "dancing feet" and happy shrieking.  Aziza loved music more than anyone I have ever met.  The louder the better - that girl sure knew how to bust a move.

And now, after a lonely and difficult day, I have Samantha home and am getting ready for my dear friends to come over for some dinner and board games.  It will be nice to end the day on a positive note.  Some days are just harder than others.