One Determined Baby Girl

So it is clear by now...
That my angel..
My baby girl...
Had a will of steel...
And a heart of gold...
And definitely...
More than one trick...
Up her short little sleeves...

And so it should not come...
As a shock to any...
That even after...
Surprising everyone...
At Canuck Place last night...
That she had still...
One more mischief...
In store for all of us...

It turns out that there was...
Indeed a nenuphar...
And a lantern last night...
That both bore Ella's name...

A waterlilly for Ella...
And a lantern for Ella Jacqueline...

The waterlilly...
Came home with me...
But the lantern...
Stayed at Canuck Place...

Simply because...
There was a tenee tiny...
Little doubt in my mind...

And more so...
Because I needed to make sure...
Another parent would not be looking...
For "their" Ella's lantern...

So when I came home last night...
I emailed Laura at Canuck Place...
And told her if after verification...
They confirmed that Ella...
And Ella Jacqueline...
Were indeed one and the same...
I would not mind taking home...
The lantern for my family to enjoy...

I did not expect...
The answer I received...

That last night after the event...
All lanterns were dismantled...
Cleaned...
And packed up...

Including Ella Jacqueline's...
For yet another event...
To happen a year from now...

But upon a last walk through...
In the gardens this am...
Laura came across..
This one, sole...
Un-named...
Lantern...

I picture it...
Still hanging...
As though waiting...

And I can swear in that moment...
Of reading Laura's email ...
I could hear Ella giggle...
Loud and clear...

And say...
"Maman I made sure...
You did get to take the lantern home...
As you so wished to do...
For grand-maman to enjoy..."

It was even more comforting...
To have Laura tell me...
She had kept...
Ella Jacqueline's name tag...

Just as I know in my heart...
That Ella continues...
To illuminate my day...
Every day...

I love how...
Determined and driven...
She was...
And still is...

And how...
She goes out of her way...
To make sure...
I never forget it...

ELLA - Everyone Loves Little Angels

Remembering Ella

If you've followed my journey
You know that at this time last year
My girl played a huge trick on me
On a day where I became so emotional
At an event put together by Canuck Place
Because I was remembering...
Remembering Ella.

Why so emotional, you say?
Simply because it was, on that day,
And in that moment
As though I was reliving Ella's funeral
And allowing myself to actual live it.

I had been so focused
And determined to be strong
on April 7, 2008.

I kept it together
So much so
That I forgot to live in the moment.

I was frozen in time
And though I listened to every word
Apoken that day
It was almost like they were not registering.

And so a year ago, as I waited for my friend Linda
Who had agreed to be my rock once again
I started to panic
And by the time the ceremony had started
I was in tears.

An hour later,
Linda and I were walking through
Canuck Place gardens and laughing...
Laughing so hard!

And so tonight, as I went to
Remembering Our Children
To remember Ella
Ella in all her glory
And Ella in all her mischief
I kept thinking
How can she pull it off?

And throw me off my game
As she did last year
And bring me from buckets of tears
To belly laughs that hurt your cheeks
In a matter of a few minutes.

True to form
Ella did not disappoint.

As I stood to go light a candle
In her memory
The glow globe given to us by Canuck Place
And which stood by me,
By my bum actually,
Lit up full of colours.

She lit up my bum!!!

And again in that moment
I went from tears
To a huge smile.

But that was only the beginning...

As Linda and I walked the Canuck Place gardens
My friend Shauna came up to inquire if I'd found Ella's lantern
And asked if Jacqueline was indeed her middle name.

I quickly warned her "don't tell me where she is!"

Minutes later
Laura who works at Canuck Place
Said some of the kids like Ella
Were this year remembered on
What we call in French
A nénuphar*.

And so, about a foot away
From where her lantern stood in the dark last year
Linda and I found Ella's nénuphar.

And this time, the tealight was still lit.

I almost felt disappointed
To find her so quickly
Until I remembered Shauna's comment...

The nénuphar only said Ella...
Not "Ella Jacqueline"!

So we found Laura
And asked her if there was another Ella.

"No", she said, "there is only your Ella".

And both Linda and I giggled
At the thought that Ella once again
Tricked the Canuck Place team.

So where is her lantern?, I asked Shauna.

"Are you sure you want to know?"
Yup, gotta see that lantern!
"Right there in the bushes"...
As she pointed.

Linda and I walked over
And still could not find her
It took Laura, Linda, myself and another CP volunteer
Another good 5 minutes
To finally find the lantern.

And there in all her glory
Was a beautiful lantern
For Ella Jacqueline
Under a clear, crisp fall evening
Shining bright
On Ella's 27th month birthday.

* nénuphar is a waterlilly - I actually did not know this until just now when I looked it up. Lilly was one of the names high on my list for Ella :)

ELLA - Everyone Loves Little Angels

A Ladybug with Wings

On October 27, 2010, I went to work with a heavy heart... as I do, every 27th of every month.

19 months ago, I said goodbye to my girl, Ella.

And although my heart was heavy and tears were on the surface, I could not help but smile and get real excited as the sun came out. I thought "Thanks Ella, maman needed the sun today".

So, on my work break I headed outside to enjoy the warm of this beautiful Fall sun by the waterfront, in a spot I have not visited since before Ella was born. And I just stood there for a while, reflecting on the last three years of my life and all that's hapened, I felt sad for the obvious reasons and grateful for such a beautiful day.

I then rejoined a group of colleagues outside. And as I approached them, someone pointed to one of my team member "ladybug - on you". And I stopped breathing...

If you have followed my journey, you know that Ella sends me ladybugs. In the weirdest places, with the outmost perfect timing.

What you may not know is there were very few ladybug moments this year and I would be tempted to say barely any. So this ladybug, landing on a dear friend, in between cement building by the water and staying there for a little while before flying up, up, up and away on Ella's angel anniversary was quite the sweet gift.

It brought the good kind of tears to the surface. It allowed me to focus for the rest of the day and feel content that Ella knew to take care of my soul today as she does so well on so many occasions.

And as I stopped by the cemetary later that day to bring her fresh flowers, I was pleasantly surprised to see a goose, lying down, a few feet away, just chilling, my heart heavyness was lifted once again.

I had expected a good cry and most definitely sadness, but instead, I once again said thank you to Ella, for sending me another one of my favorite winged creatures to cheer me up.

Thanks bubba, maman loves you!

PS - Take a look at the picture. It took a while for me to realize it but this one is the earliest recording of the many ladybug moments :)

ELLA - Everyone Loves Little Angels

Travelling the World

On Oct. 24, 2008...
Ella started to travel the world...

A hop on on a plane...
A stop in Winnipeg...
A much anticipated visit...
To meet her granpapa Kumar...
And her grandmamaman Kamla...
Her great-cousins and their families...

It was meant to be a month long trip...
Taking us...
From Winnipeg to Montréal...
To meet my side of the family...
And for me to enjoy my time off with my baby girl...

I still remember how Ella was quiet...
And happy, really...

While I stuggled to get answers...
For the problems I already knew we were facing....

Ella had gone in the day before...
For a second lung xray...
And by some stroke of luck...
Or rather what I call now...
Writing in the sky...
Ella was seen by the radiology technician....
Who had performed the first xray 10 days earlier..

And he remembered...
Ella...
My Ella...

Long story short...
There was indeed progress of the wrong kind...
In her little lungs...

And so I desperatly tried to get...
Radiology and paediatry to talk...
Even minutes before we boarded our plane...

Our flight took off...
With Ella in my arms...
Peaceful...

She fed...
And she slept...
In my arms...
And in her baby seat...

She played with my hair...
And smiled to flight attendants...
Oblivious to my worries...

Which came crashing in...
Minutes after we landed...

"Ms. Dupont, this is Dr. H...
We need you to come back to Vancouver...
To run further tests"...

As my heart sank...
I remember grabbing a pen and paper...
And noting on it...
A list of details...
I knew I needed to remember...
As my brain shut down...

My baby was sick...

I already knew it...
I could not prove it...
But my gut had yelled it...
From the day she was born...

I also clearly recall...
Asking Dr. H...
Who was requesting our immediate return...
If a couple of days would make a difference...

I had to take my girl...
To Montréal to meet my family...
Her family...

I did not know what the answer would be...
And I honestly can't say I would have listened...
Had the doc said don't go to Montréal...

It's as though I knew...
That it would be...
Ella's one and only...
Trip back East...

So we went to Montréal...
And when we arrived at my parents' place...
I was faced with telling Ella's other grandma...
Grand-maman Gigi...
My own maman...
And grand-papa Jacques...
That Ella was sick...
And that we would not stay...
As we had planned to...

Instead, we made the best...
Of the little time we had...

Ella met her cousins...
Samia and Renaud...
And she met my friend Anick...

She played with grand-maman Gigi...
She was photographed by grand-papa Jacques...
And actually was the superstar...
On a photo shoot...
Organized by her uncle Martin...

Ella also was pampered...
By aunty Marie-Claude...
To whom I later found out...
She gave a big scare...
Because of her laboured breathing...

The only ingredients missing...
Were my brother and his wife...
Who at the of our visit...
Were away on a trip...

It would have been a month...
Of time with family...
With friends...
With at least a visit to Québec City...
And another one to Ottawa...

It would have been enough time...
For Ella to meet her uncle Jacques-André...
And auntie Janic...

And then after that month...
Visits to Yellowknife...
And Trinidad...
Would have been complemented...
Possibly by a trip overseas...

At least that was the plan...

Fast forward 2 years...
And tomorrow, October 27th, 2010...
Will be 19 months...
Since I lost Ella...

And yet...
Ella has travelled the world...

Ella still travels the world...

Ella lives in the heart of friends in Ireland...
And Ella brigthens the days of moms in the UK...

Ella inspires families in the U.S....
And Ella shines in Germany...
As well as in many, many other locations...
Around the globe...

She has brought together...
Families from several countries...
Who just like ours...
Have a common diagnosis for this PVNH rare disease...

And so through her passing...
And in the mission she left me...

Ella not only travels the world...

But she lives in
British Columbia....
Québec...
Manitoba...
Ontario...
PEI...
Alberta...
Northwest Territories...
Trinidad...
USA...
Australia...
New Zealand...
Ireland...
Germany...
U.K....
France...
Belgium...
Austria...
South Africa...
Poland...

And Ella continues...
To travel the world....

ELLA - Everyone Loves Little Angels

Blessings for late August 2010

Her name is baby K...
And on Saturday, it's as though she showed me the way...

At a full 18 months old...
She is almost 7 months younger than my girl...
(there goes that lucky 7 again)...

And although we started the day as strangers...
K has become a close friend...

She is the daughter...
Of a friend of Ella's uncle D...
And a daddy's girl to boot...

Sporting blond hair and blue eyes...
She could not be further apart...
From my own baby girl...
From my angel...

And that is probably why...
I was able to so openly...
And so carefully..
Without a care in the world...
Spend quite a bit of time...
Getting to know baby K...

As she sang...
And danced....
And talked...
Blew kisses...
And bubbles too...

At aunty Trish...
And at her dad...

As we spent the day...
Getting acquainted...
Baby K...
Helped me feel whole...
Again...

Her breath so calculated...
Her hands so soft...
Her smile so bright...
She is one little determined little girl...

And after a day full day...
Spent so preciously being a toddler...
Baby K fell asleep...
For the 2nd time...
As I took her out for a stroll...

Far from the noise...
Far from the crowd...
On the quiet streets...
So that I could hear her...

Breathe...
Talk...
Sing...
And just be...
Baby K...

Blessings to you Baby K...
For helping me figure out again where my heart is...
And where it belongs...

Blessings to you...
And your family...

Blessing for D & Z...
And their lovely family...
For taking such good care of me...
For their friendship...
And for helping me through tough days...

Blessings for a busy weekend...
Spent outside being carefree...
And for good cries when I needed them...

Blessing to new friendships...
Laughter...
And smiles...

Blessing for uncle D & R...
For being so generous...
And weaving in...
Ella's mission...
Into Baru's anniversary...

Blessings for such a lovely weekend...
Spent doing a lot of nothing...
And recharging my heart...
For yet another day...

ELLA - Everyone Loves Little Angels

I Carry You In My Heart by E E Cummings

‎2 years ago on Aug. 14
I was due to welcome
Ella in this world.

Instead I am left
Celebrating the life of an angel
My angel,
Ella

Tonight, on August 14,
I came across
this amazing poem
I will share it with you.

I Carry You In My Heart by E E Cummings

I carry your heart with me
(I carry it in my heart)
I am never without it
(anywhere I go you go, my dear; and whatever is done
by only me is your doing, my darling)

I fear no fate
(for you are my fate, my sweet)
I want no world
(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

Here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

I carry your heart
(I carry it in my heart)

ELLA - Everyone Loves Little Angels

Celebrating a Princess

In exactly 32 days...
I would have celebrated...
The life of a princess...
On your second birthday...

In exactly 32 days...
I am left instead...
With honouring...
Your second memorial birthday...

A day that would have included tiaras...
Dress up...
Pretty pink shoes...
Magic wands...
And likely a tea party...

Is now a day to fundraise...

Fundraise for families like ours...
Who have their world turned upside down...
When their child becomes ill...
And fights for life...

Fundraise in memory of an angel...
For families like mine...
Who just as I...
Never knew there was...
A rare disease...
Running through their blood...

Fundraise for moms and dads...
Who find themselves...
In a whirlwind of grief...
As parents without a living child...

In exactly 32 days...
I want to be having...
A princess party...
For my princess Ella...

In exactly 32 days...
I will...
Celebrate the life...
Of a princess...

My princess...

And in exactly 32 days...
I know that up in the sky...
Right there upon your cloud...

You will send me sunshine...
Songs...
And music...

You'll twirl for me...
Wearing your pink gown...
Pink slippers...
Your sweetest smile...

And of course, your princess tiara...

ELLA - Everyone Loves Little Angels

"I'm Listening Ella"

It's been more than 3 months...
3 long months and yet they've gone so fast...

3 months since I found the courage...
And the energy...
To put thoughts to computer...
But tonight...
It is time...
Because...
"I'm listening Ella"...

After a whirlwind of days up and down...
Days where I hit the lowest of lows...
Lower than what I'd experienced...
Since your last breath...

Days where I barely had a moment to think...
About you...
Me...
Or anything else...

Days where I felt like just giving up...
Days when I got angry...
Real angry...
At your cemetery's management at Forest Lawn...
For actions so uncompassionate...
And so utterly disrespectful...

Days where my heart filled with sorrow...
For other families experiencing... W
hat we'd gone through...
Just a year earlier...

Days where my health...
And inability to make us a family again...
Became another source of stress...

Days when my heart filled with pride...
At how many people love you...
And remember you...

And days when my family's state of health...
Also became a source of worry...
And yet another reason to fight...
To live...

I'm listening Ella...

Through it all...
Through those last 3 months...
Just like it's been...
For the last 15 months...

I am listening Ella...

I am listening...
To the sound of your voice...

I am listening to the songs of birds...

I am listening to the sounds of waterfalls...
And that of raindrops...

I am listening to parents...
Who have children affected by your disease...
And whom have questions without answers...
And are in need of support...

I am listening to Ella playing...
On the radio...
And in my head...

I am listening...
And always will be...
To your messages...
Which show up at the most unexpected times...
In the most unorthodox ways...

Beyond Ella belting tunes at the hospital coffee shop...
Nearly every time I visit...
To Ella coming on the speakers...
As I tell a friend a story about you...
To the violonist diving into...
One of our songs on the corner of the street...
And to the sound of the summer breeze...

I am listening Ella...

And tonight...
Again...
You talked to me...

It did shake me to the core...
And swept my breath away...

It took me a few minutes to understand...
But it made perfect sense...

A woman...
Standing outside the stall I was in...
Saying...
"I'm listening Ella"...

And minutes later...
A beautiful little girl...
Returning to her restaurant seat...
Flanked by her mom...
The woman I'd seen moments earlier...

I told your uncle Dave...
And he agreed I probably had a near attack right there...
We both got a good laugh...
At how your "Listen to me Maman" statements...
Continue to get throught to me...

And for ever as I shall live...
For ever as I shall breathe...
And until my death reunites us...

"I am listening Ella"...

ELLA - Everyone Loves Little Angels

Paying It Forward

For nearly a year now...
I've heard often...
How strong I am...
How generous I am...

For nearly a year now...
I've been honouring my baby Ella's life...
By paying it forward...
In every way I imagine...
As best as I can...

But before I knew how to do it...
There were two moms before me...
Who showed me the way...
Who taught me how...

The first, I've never met...
But I heard...
She lost a child a few years ago...
A child who like Ella...
Was an ICU patient...

That mom who does not know me...
Or knew of Ella...
Carefully put together...
Christmas gifts...
For moms in ICU...
Back in 2008...

A red bag...
Some soft tissues...
A red heart ornament...
A notebook, and a pen...

With it came a note...
Telling me how 3 years before...
She was herself in ICU...
With her son...

And that through the Holidays...
Her thoughts would with be me...
With my child...
With my family...

The heart hung by Ella's bed...
In the notebook...
I could not bring myself to write...
Except for two occasions...
One of which was to note...
"They think you're going to make it"...

Fast forward three months...
And I meet a mom...
In ICU with her daughter...
Whose name also happens to start with an E...
Just like my baby's...

Ella was in bed 18.
And E, her dad and her mother R...
Were our neighbours...

And on the morning of March 19, 2009...
As my girl struggled so seriously just to breathe...
As I nearly lost my daughter...
R and her husband were one of the few people...
Who witnessed everything...
Who saw how close a call it was...
For Ella that day...

Not because they wanted to...
But just because that's how things are...
When your child lies 3 feet away from another...
In an ICU with very few actual rooms...

The following morning...
As she came in to spend the day with her daughter...
R walked over to me...
And handed me a gift...

A coin...
A very special coin...
With a picture of an angel in the front...
And three words inscribed on the back...

HOPE...
FAITH...
BELIEVE...

And as she gave me this gift...
Her words were simple...

When I am upset...
When I am scared...
When I am losing hope...
I must channel all my negative energy...
Into this coin...

And then...
I must focus on charging myself up...
With positive thoughts...
With love...
With strength...
And with faith...
For Ella...
To feel it all through me...

This amazing gift...
R gave me...
Has gotten me through...
Ella's last 8 days...

It has gotten me through...
The dark days...
The rotten days...
The ongoing hurtful days...

But it also has gotten me through...
The sunnier days...
The lovelier days...

It continues to go with me...
Everywhere I venture...
It continues to show me...
That very simple actions...
Sometimes make a world of difference...
In someone's day...

In someone's life...

And so my strength...
Is not entirely my own...
Nor is my generosity...

Both are inspired...
By moms I cherish in my heart...
By moms who just like I've learned how to do...
Simply...
Pay it forward...

ELLA - Everyone Loves Little Angels

Breathe

Breathe....
Simple...
Right?...

Definitely for you...
Maybe for me...
But absolutely...
Not simple...
For Ella...

On March 19, 2009...
Just as it happened a few times before...
Ella started to struggle to breathe...

How can this be...
When your child...
Is hooked on a respirator...
24/7?...

But this pattern...
Was too familiar to me...
So I saw it happen...
Right before my eyes...

Her oxygen level dipped...
And came back up...
And it dipped again...

Within seconds...
Her nurse was at bedside...
As Ella became agitated...
Her eyes telling me...
Something was very wrong...

It was clear...
This was not good...
As she dipped...
Harder...

By the time I realized...
What was truly happening...
Dr. Kent was with the RT...
Trying to move air...
In my daughter's chest...

None was moving....
And I started to panic...
While the RT tried her best...
But no air was moving...

I remember a demand...
Whether it was actually a command or a yell...
I can't recall...
But Heather, a senior RT, suddendly appeared...
To second Dr. Kent...

Colour had changed...
Hands were about to perform...
Extraordinary measures...
As I pleaded to Dr. Kent...
"What can i do?"...

"You've got to give us...
space to work"...

And I see myself...
Like it was yesterday...
Take my touch away from Ella...
Bring my hands to my mouth in horror...
And back a few feet from my Ella...
To the foot of the bed...
So that the team of experts...
Could make air move...
Into her little lungs...

I stood there...
For what seemed like an eternity...
But really it happened so fast...

Lungs fnally started to let air in...
As drugs were administered to calm Ella...

On March 19, 2009...
Dr. Kent and Heather...
Saved my daughter's life...

On March 19, 2009...
I knew that Ella's time was near...

On March 19, 2009...
A handful of people were witness...
To my ordeal...

And of my daughter's struggle...
To perform what should be...
The simplest of acts...
One we all take for granted...

On March 19, 2009...
Ella gave me the biggest sign...
That I needed to get ready...
And prepare her...
And me...
For what was to come...

On March 19, 2009...
My daughter showed her maman...
What a will of steel she has...
And yet how fragile her little body was...

On March 19, 2009...
I almost lost you again...
But on March 19, 2009...
You went on to give me a gift...

The gift of 8 more days...
To love you...
Cuddle you...
Play with you...
Touch you...
Kiss you...
Feel you...
Know you...

On March 19, 2009...
You sucked your little finger...
You counted your friends...
You danced...
You smiled for maman...
You touched my cheeks...
You continued to twirl my hair...

On March 19, 2009...
You gave me the bestest of gifts...

On March 19, 2009...
You breathed...
You lived...

Je t'aime mon ange!
Maman

ELLA - Everyone Loves Little Angels

Countdown Has Begun

It's official, the coundown has begun...
And I can't do anything about it...
Not, one single thing...

Time won't stop...
No matter how clever I think...
I can be at willing it...

The countdown was always there...
Ticking away...

But with the shift from Feb. 28...
To March 1...
It has stuck me...
As the most cruel...

With all of us now in March...
I can't escape it...

Every day is a stronger reminder...
Than the next...
On what's to come on March 27...

Every day is full of memories...
Some that were hopeful...
And then the reality of the events...
Hits me right in the face...

And as if that was not enough...
It is a constant reminder...
Of what I wanted to do...
But could not do...
To honour Ella yet...

A long list await...
But life gets in the way...

Life for now equates with work...
The place where although I know it helps...
I can't focus on my daughter as much as I'd like...

The place where I started having panick attacks again...
The place where I find myself in tears, more and more daily...
Not because someone is mean...
Not because of the work load...
But simply because the countdown is on...

The place, like the rest of the world, where everyone has a life...
A real life..
Although maybe not always happy...
A life without the black cloud...

A place that I must be at...
Because otherwise I won't be able...
To keep my home, Ella's home...

Rare Disease Day went un-noticed...
The Olympics celebrations nearly had the best of me...
Not because I was out partying and enjoying it...
But rather because I cannot celebrate life...
The way that it would have been celebrated...
If Ella was with me physically still...

The countdown has begun...
And I can't do anything about it...

ELLA - Everyone Loves Little Angels

All The Way to Belfast

Some of you might have heard...
Or maybe even read...
That my little girl...
My vivacious, precious, little darling...
Will be in Northern Ireland...
In Belfast, more specifically...

You see...
On February 26...
Belfast celebrates...
Rare Disease Day...

Yes, I know...
Rare Disease Day...
Is really on February 28th...

But who celebrates at City Hall?...
On a Sunday of all days?...

So, all the way overseas...
Ella's story...
Will part of a day...
This Friday at noon...

To bring awareness...
And seek better screening...
For rare diseases...

But how can this be?...
I hear you ask...

Very simple...
Is my answer...

When your family...
Becomes part of the brotherhood...
And sisterhood...
Of rare diseases...

We all become related...
We are all friends...

And so for Ella...
This wonderful honour...
Came in the form of a request...

From a grand-dad...
Fighting to save...
His sweet grand-son...

A very brave young boy...
Cavan...

Afflicted by XLP and EVB/HLH...
Diseases with absolutely no other relation...
To Ella's own disease...
Than the fact that they are also...
Genetic...

Cavan fights...

As Ella always did...

Just like Ella's disease...
Cavan's is also rare...
So rare, in fact...
That only 1 in 100 families...
Have had such a diagnosis...

So on February 26...
Ella's spirit...
Will soar high...
And wide...
Over Belfast...

Shedding light...
And awareness...
On statitics...
She fell victim to...

An overwhelming...
75% of rare diseases...
Affect children...

And of those...
30%...
Will not live...
Beyond 5 years of age...

Almost all rare diseases...
Are incurable and...
More often than not...
Without effective treatment...

On February 26...
Ella will look after...
Cavan and his family...

Maybe even play a few tricks...
As she so loves...
To do to me... :)

All because...
Cavan's grand-dad...
Promised to celebrate...
The strongests of strongests...

Currently living...
With rare diseases...

And the bravests of bravests...
Who like Ella....
Could not beat the odds...

Cavan...
Ella & I send you...
Butterfly kisses...
And ladybugs hugs...

ELLA - Everyone Loves Little Angels

Prelude to Other Faces of PVNH

Since I learned of the diagnosis last October...
My mind has been in overdrive...
Overdrive to the 100th power actually...

It already had been in my ongoing research...
Since that one disease had been mentioned...
When Ella was hospitalized for the second time...
A year prior...

And so I went on...
Reading every paper I could find...
Every abstract...

Posting testimonials on web sites...
Researching late at night...
Sometimes all day...
Contacting rare organizations around the world...

But none of those efforts for answers...
Really brought me comfort...
On the other hand, they generally...
Got me even more frustrated...

That medicine...
As amazing as it is...
Has so many limitations...

When it comes to the identifying...
Managing...
And curing rare diseases...

So I took matters in my own hands...

Yes, I know...
I have control issues...

But sometimes, these types of unhealthy behaviours...
Actually are needed to move forward...

And then, it happened...
Out of blue...
I found a post...
From a mom speaking about her son living with PVNH...

In a moment of clarity...
I thought maybe?...
Maybe I can find her...

And I did...

I sent her a quick note...
Told her Ella's story...
And asked her if she would...
Share her own experience...

She immediately sent back an email...
To say sorry for my loss, and thank you...
To offer her family's story...
With regards to PVNH...

From the other side of the world...
And, as if offered as a gift from Heaven...
Came the news that she knew...
Several other PVNH families too...

And then I thought...
If I can't control the lack of information out there...
I can definitely impact what the useful information can be...
When it comes to PVNH...

Out of my personal dysfunction...
Came a Facebook group...
X-Linked Periventricular Heterotopia (PVNH)...

A group?...
Not really, it was just me & Ella...
Or so I thought...

But quickly there was one...
And then two...

By Christmas...
As many as 9 families had joined...
Because they knew...
As I did...
That Ella & I were not alone...
And that we would never be again...

In the next few days...
I will introduce to you...
To the other faces of PVNH...

The ones that help me keep my chin up...
And my faith unwaivered...

That one day...
One day, we will know...

How to better diagnose...
Manage the symptoms...
And hopefully cure PVNH...

ELLA - Everynone Loves Little Angels

The Faces of PVNH: Ella

So, now we know, It's called PVNH...
But really, what does that mean?

First, a name...
Periventricular Nodular Heterotopia...

Then, a lesson in medicine...
A rare disease characterised by some neurons taking a wrong turn and not ending in the proper location in the brain, causing some havoc along the way...

Passed on from mother to child, it is thought to be lethal early for males (future posts will show you this theory does not hold true anymore)....

This condition, like so many of the nearly 8,000 rare diseases identified, can also happen spontaneously - that is with no other family link found...

In medical litterature, PVNH is described as a disease associated with a mutation in the gene which produces a protein called Filamin A (FLNA), a binding protein....

To this day, our genetic team tells me that Ella's case was actually not a mutation but near complete or complete deletion of the gene...

This, as far as they know, has never been documented to date...

But I told you Ella was a zebra... And zebras are no horses...

So in true Ella fashion... Ella's symptoms did not really reflect the typical symptoms expected with this disease...

No delay... No seizures... No hyperflexible joints...

But there was a cardiac defect, something which helps put weigth on the PVNH diagnosis... And then, the neuronal migration defect was there too...

But the biggest symptom Ella had...
Cannot be explained clearly and definitely by PVNH...

To this day, it is impossible to confirm...
That Ella's PVNH caused her end-stage emphysema on both lungs...

And that, is the reality of rare diseases...

While I am blessed to have a diagnosis...
A luxury many families affected by rare diseases are not granted...
I continue to search for answers....

Answers on what happened to Ella...
Answers on what it means for my family...
The one Ella and I have...
And the one I am wishing to grow in her memory...

ELLA - Everyone Loves Little Angels

Ella The Zebra

Since October 2008, we've known...
Known that Ella was a zebra...
A little girl like no other...
Full of life and bright as the sun...

And though we tried our best...
We could not...
While she was alive...
Find out what was causing her illness...

And so, Ella lived...
On oxygen...
In the hospital...
For nearly 6 out of her 8 months of life...

And what a life!

Almost always a perfect smile...
Playful and loving...
Full of character...

Looking so happy...
And healthy on the outside...
You'd never think...
Her little lungs were destroyed...

But every once in a while...
There was a flash of fear...
Usually around the time...
She would start to truggle to breathe...

And so we learned to read the signs...
And manage the symptoms...
Of Ella the Zebra...
So she could live her life...
For as long as she could...

And though Ella lost the battle...
Her fight did not end...
On the contrary...
It is now stronger...
Stronger than ever...
Carried by her so large spririt...

It took a year...
To get to the elusive diagnosis...
But the one question remains...
Is this the only one...
The diagnosis that caused it all..

An with that...
the work is laid out...
For us, Ella's army...
To change the face...
Of rare diseases...
Starting with...
The one answer we have...
Called PVNH...

Ella - Everyone Loves Littles Angels

7 Weeks And Counting

It's been more than 7 weeks...
7 weeks and 4 days to be exact...

7 weeks and 4 days since I sat here...

And last journaled our journeys - mine and Ella's...

It was November 23, and I recounted...

The day we left BCCH after our 2nd stay...

The day in 2008 when our hope was big and grand...

As we prepared to take our baby home again...

That was 7 weeks and 4 days ago...

And so much has happened since...

7 weeks and 4 days of being back at work...

Even if more than half of that was only part-time...

A first Christmas... without Ella...

A first New Year... without Ella...

A brand new decade... without Ella...

A visit to Montreal...

My first since we took Ella...
To meet her families in October '08....

An emotional flight in, it was...

An entertaining flight back I had...

And quite a fun surprise for my familly I offered in between...

And such a blessing Ella gave me...

By showing me I needed to be with my family...

At this part of our journeys...

And then there is...

A larger bereavement group...

ELLA's bereavement group...

A fact I find so sad because I know...

I know the pain...

The pain that each parent of angels feels...

As they start down this dark journey...

They did not choose to be on...

And yet, it make me grateful...

That through Ella's journey...

Parents come together...

To support each other...

Then there is...
Another grouping of parents...

The X-linked PVNH group...

That Ella also brought together...

A group of parents so strong...

For their families are affected...

By that same rare disease...

That took Ella from us...

They chose to gather...

In one spot together...

To lend support...

And seek help...

And through it all...

I am learning...

Learning to take care of myself...

That I come first...

Back to yoga...

Added acunpunture...

And did I mention my Christmas Tree...

And Ella's Tree...

Are both still up...

Shining their brights lights...

Every night when I get home...

As I reflect on my last 7 weeks and 4 days...

And as I am told by my friends who've been by my side all along...

I know I am making progress...

At my pace...

On my terms...

As little...

Or as much...
As I can handle...

Honouring my daughter...

Thinking of new ways...

To pay it forward...

And living my life on purpose...

For as long as I live...

ELLA - Everyone Loves Little Angels