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

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

Grateful... Just Plain Grateful...

A year ago tomorrow will be the day that we took Ella home after a month-long stay at BCCH. The second of our three stays there with Ella...

A year ago tomorrow, I was fortunate to live again with my daughter at home for nearly two weeks... Though she was on oxygen therapy, she at least was home with me...

Throughout it all, through the last year, through the good days and the bad days, through the panic and the grief, I survived my ordeal because I felt loved and supported by my family: my mom, my dad, my sister and my brother, their spouses and my nephew and Goddaughter...

But beyond the love and support I received from my family is the other kind love and support I felt...

The love and support that comes from friends who without any expections in return sent my and Ella's way...

There were visits at BCCH, presents for Ella, an onion tart to feed her maman and other kinds of tasty goodies, calls to check in on us, Guinness smuggled in to our room on one of those days, messages and encouragements being sent on Facebook by mail and by email, donations made in Ella's memory, hundreds of cards and even ladybugs mementos... And through it all, love and faith carried Ella and I forward...

As I started my first day back at work in 15 months today, just like it was the case throughout Ella's illness and after her passing, I felt the love and support of my friends and family uplift me...

Since I decided I would attempt a return to work, there were more words of encouragements, emails, cheers and calls...

And as I headed to work today, more messages, cheers, calls, even flowers - pink of course and embraces came my way...

Since I came back from my first day's work tonight, there's been so much more love and support...

What else can I say but "thank you! / merci " to the hundreds of family members and friends, here in Vancouver, throughtout Canada, in the US and even overseas who have carried me, my grief, my broken heart and my angel forward on this journey back to life...

I am grateful... Just plain grateful... for your love and your support!

I could not be so strong without you having my back and complete confidence in me. And on behalf of Ella, my little angel who I know wants nothing more than for her maman to be happy again, I'll say it once more: "Merci! / Thank you!"

ELLA - Everyone Loves Little Angels

Memorial, Lanterns and Mischief

On November 8, 2009, a day after Ella's 15-month birthday was a very special event. The kind of event one would pray to never be invited to, if it even crossed their mind as they became a parent... As only a select few do get invited... or so it seemed to me in March…

But the reality of it is there are a lot more select “us" out there than one might think. Those "us" are bereaved parents... And the event was the Remembering Our Children event...

Organized by Canuck Place volunteers, the event consisted of a brief, joyful yet intense memorial service followed by a lantern-lit walk at Canuck Place. And here is how it played for me that night...

I showed up to the memorial service by myself.... my support friend not being able to join me after all that evening because life was simply taking over that day… (no criticism here, I understand how life goes, believe me!).

Fortunately, I thought, I had lined up another support friend. And there was still a chance that Ella's dad might show up; as he said he would come...

Well, as luck would have it, my second support friend was late and Ella's dad did not show up.... And because I sat in the 2nd row, toward the corner of the room - in front of the musicians - I could not easily be reached by my friend who showed up late... Silly, I know. And I won't make that mistake again...

So, as it happened, my friend Linda, chaplain at BCCH and my family for this special event sat in the back - and though I looked for her, I just could not see her... I was actually looking back right over her head, not realizing she was there... It was kind of funny actually, in retrospect, as I must have turned around 50 times, out of fear, desperation and reflex - all thrown into one....

Why fear and desperation? Because I was alone... Well, not really... but yeah, so I thought... in the moment…

While I was surrounded by fellow angel parents and their families, most of whom I know from the Canuck Place bereavement group, I was the only one unaccompanied… (remember I thought Linda was a no show)... And while a few of those parents and I spoke, exchanged stories, even laughed and one offered for me to sit with her and her husband before the ceremony started, I stayed where I was with an empty seat next to me, praying that Linda would show up...

But back to the fear and desperation...

It began a few minutes before the actual service started… Those who know me know how much music is an intrinsic part of my life… And it became clear that I was going to lose it as two guitarists started playing and singing a Beatles song …

But I tried my best not to lose it…

By the time the service started, tears were rolling off my cheeks like a cascade…
And as Eric, chaplain of Canuck Place, spoke I was already a complete mush…

I don’t know if it hit me so hard because Ella’s passing is still very raw… Or because I was by myself… Or because it was an opportunity to take in the enormity of it all… something I did not really do at Ella’s funeral because I was in “I must keep it together” mode that day…

All I know is that the service, as beautiful as it was and as serene as it was meant to be, hit me real hard… It must have done something similar to a few moms around me as we glanced at each others’ in understanding with tearful eyes...

There are 3 moments in the service that stand in my mind…

The first? A poem that Eric read, which upon hearing it, sent me even further into a spin… It’s called “We remember you” and though Eric adapted it to speak of many children whose families were present; it spoke to me and me alone at that moment as it had when it was read at Ella’s funeral on April 4, 2009 by, if I recall correctly, her Godfather Will…

The second is how a member of each family was offered the opportunity to light a candle during the ceremony and place it into a sandbox (which for me was the perfect metaphor – playful and exactly as children’s memories and souls should be) and we then mentioned their name out to the group… I got through it and that very candle is on my mantle now, surrounded by pictures of Ella’s and moulds of her little hands and feet…

The third came at the very end when Kathryn, a clinical counsellor, invited everyone to shine to the sky a little gadget that beans a ray of light as the group sang “Twinkle Twinkle Little Star”… And right there, I lost it again…

You see, Ella fell asleep every night at BCCH on that very music… And as if that was not enough, that same melody is that of a song I sang to her from the day I knew I was pregnant “Ah-vous-dirais-je Maman”, to soother her - and me… To the very day she died… Every single day… And even now…

By the time we’d sang the song and the service ended, I was physically and emotionally drained, having cried all the tears in my body…

And that’s when Ella first interfered!

Linda, my friend and my family was “revealed” to me… She gave me a huge hug and all the fears and despair were lifted… But that was only the beginning…

Linda and I now headed, as did all the families, back to Canuck Place. It had rained all day. The ground was wet, it was a dark night and the air was crisp… But that did not matter, as Canuck Place was festive…

Not festive as in decked out for Christmas… But festive in a very solemn, yet very bright and beautiful way… Oh, and the rained had stopped!

There seemed to be 100s of lanterns on the garden grounds…. I actually don’t know how many there were and did not dare to ask as the answer would have daunting – each lantern representing the soul of a child taken too soon to become an angel…

The staff of Canuck Place welcomed us, offered us some hot cider (a cheerful treat on such a cool Fall evening) and then sent us to walk around the gardens to find the lantern which belonged to our child…

As Linda and I started exploring, looking at every single lantern’s name to find Ella’s, we quickly commented how amazingly beautiful it all was, and yet how tragic it was… to see sooooo many lanterns – each for a child who’d died…

As we diligently went about checking each lantern, I commented on the fact that in true Ella style, she’ll make sure that we find her last… And as we came across one lantern which had run out of candle and we got that fixed, Linda thought to herself, something wonky will happen… And that feeling intensified, I later found out, as we came closer to where we’d started…

After a very thorough tour around the Canuck Place gardens, my heart started to sink… I had not found Ella’s lantern…

So, we made our way to the volunteer who knew where each lantern was placed and asked where Ella’s was…

Can you believe that my darling, sweet girl’s lantern was actually at the starting/ending point of our tour – right where Linda and I actually started looking at names and where I told Linda that we would find Ella on the last lantern??? But again, in true Ella style, there was a twist…

A twist I attribute to my mischievous angel… J

Ella’s lantern was not lit… And as we both came to the realization of it - Linda and I just cracked up giggling because we just knew that Ella had been by our side all along, waiting anxiously for us to get to the end / the start and laughing as she got passed us to go “Look Maman - Pffft, pffft, pffft” to blow out the candle with her now healthy lungs!!!

We continued to giggle after lighting the candle as we walked to the new waterfall feature in the gardens to place a memorial rock in the water on which is inscribed “Ella Dupont Bedassie, Love You, Maman”. Not every inspired, I know… I guess my brain was fried from all the tears and giggles!

And then Linda and I both headed home, all the while still laughing and amazed by the turn of events that night…

As I returned to Canuck Place last evening to attend my bereavement group, I went back to the waterfall… And right there, just as I’d left it over a week ago, under the light that beams on it so intently is Ella’s rock! And it is surrounded by all the rocks angel parents placed in memory of their darling child…. just like I know those little angels surround each other up there in Heaven and cheer us on as we attempt to honour them as best as we can while they continue to play tricks on us to keep us on our toes…

ELLA – Everyone Loves Little Angels

Blessings

As I returned from spending some time with Ella today, it occured to me that there are so many experiences I have not written about yet, so I'm now going to aim to put pen to paper, or key to screen actually, every day to immortalize memories as best as I can.

There are so many things to write about: how so wonderfully supportive my family and friends have been in helping me work through this ordeal; how so many of Ella's caregivers are now tucked in my heart as my friends and family are for all they have done for her, and for my family; what a wonderful day I had on Ella's first birthday and in the days prior to it to prepare it, baking my heart out and planning a full on birthday party for my baby girl; how generous my friends and her dad's friends have been in supporting Ella's memories...

For tonight, I'll settle on counting my blessings.
The blessings that come clearer in the sky when I am feeling more at peace.
The blessings that take form in my old and new friends who worry about me, who support me, who love me and care for me.
The blessings for my mom and dad who through this painful time have both been rocks for me in their own rights.
The blessings that I can see a pretty flower and say thank you to Ella for opening my eyes to it.
The blessings that Ella, though she did not have the lungs for it, spent almost 8 months being a happy, smiley girl who most of the time did not know she was sick.
The blessings that I have so many mementos of her: her clothes, her toys, her lifecast hands and feet, her pictures, her videos and all my memories.
The blessings that bring old friends together to share very special moments which make you whole again.
The blessings of strangers, like Maria the grand-mother I met at the cemetary, the clerk at the store who gave Ella an angel, the Global/Virgin One Radio Morning/ Ocean Radio Morning/BCCH Foundation for all their tireless efforts and support.
The blessings of nurses who like Jane from Now I lay Me Down to Sleep took multiple pictures of Ella with her family in the days before she got her wings.
The blessings of doctors who fought so hard to figure out what was going on with my girl, and to save her.
The blessings of Rachel, a fellow mom at BCCH who was by my side when Ella gave us the biggest warning sign of what was to come and whom brought me an angel coin which I carry with me everywhere still to bring me strength and peace.
The blessings of Martine who before we flew to Montreal offered all her baby gear to make Ella comfortable on our trip.
The blessings that I can now spend some time with friends and their babies - and appreciate life with them.
And the blessings of Jennifer, a woman who saw our story on the Telethon and donated to BCCH in Ella's name because of it.

While my eyes and ears are not always tuned on to these blessings (and those mentionned here are only a few of ten s of thousands of blessings we've had thanks to Ella), Ella's is sending them to me, always. I just have to carefully listen to, see, taste, touch and smell them. And to be able to do so, I am now engaging in a process or self re-discovery. By myself, with my friends, with my family, with my therapist, with the grief counsellor, with my chaplain at BCCH and eventually, maybe one day, with a man who will love me for and in spite of all the tribulations I have been through in the last two years and who will want to be part of my and Ella's lives and possibly her brother or sister I hope to bring in to this world one day.

In the meantime, I will continue to count my blessings.