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