Friday, December 31, 2010

2010



It’s been a tough year…

2010 has found me enduring my first full year without my darling little Ella physically by my side. Although the pain of losing her appears to be sometimes more manageable, it is still very much unbearable when I face the reality, daily, that my life goes own and hers lives in my heart…

It has meant re-living for the first time the last few months of Ella’s short life. Each day etched in my memory… each bringing back its load of charged emotions...

2010 was the year of the Vancouver Olympics... The very reason I found myself moving to the west coast 5 years ago... A time which was meant for celebrations... A time which caused more pain than pleasure... because my heart was no where near festive... And seeing young babies all Canadianized only confirmed what Ella and I were not to experience...

It brought a dreaded first angel anniversary... And a second memorial birthday… Both, as warned by my veteran angel moms, were not as sad as the anticipation of each. Coupling the events with fundraisers kept me focused and busy enough that the moments were not only bearable but somewhat enjoyable… though the days before and after were still very tough to get through…

2010 has also seen me fail at more attempts to become a mom once again… And it has allowed the formal confirmation that Ella had a genetically-linked illness transmitted from me to her… I know what you are thinking… Those failures may have been my angel’s way of protecting her maman… but it does not make me feel any better…

With 2010 came the difficult realization of one more failure…. That of my relationship to Ella’s dad… And with it came the decision to finally put myself first, and separate… hoping Ella would understand...

2010 has brought its share of tears, from me and from Ella’s loved ones… but it also has brought laughter… At the very thought of the tricks that she keeps playing on everyone…

Unfortunately, 2010 uncovered more news of illness… And though I remain healthy, someone I love with all my heart is not so blessed… And just like Ella’s illness, this is they type of illness you hope you can beat… And so, we hope…

And yet... 2010 has been a good year…

It has found me become an advocate for families facing the disease that took Ella from me…

It meant a successful year back at work, full-time – after being away for nearly 18 months altogether rom the moment I went on early medical leave to the time I took to try to mend my heart…

In 2010, finally, came the launch of Everyone Loves Little Angels’ brand, a precious gift of talent from my friend Sophia Szeto…

2010 not only brought a confirmed diagnosis, it became the stepping stone for more medical analysis and, more importantly, a draft to an article to be published which will shed light and educate the medical community about PVNH...

It has culminated in over $11,000 raised in 21 months of fundraising for BC Children’s Hospital… And another $1,600 for Everyone Loves Little Angels… In addition to the couple of thousand dollars for Canuck Place, Children’s Miracle Network and Make-A-Wish Foundation collectively through various other activities…

With 2010 came the official first act of ELLA’s Teddy Program where super huggable teddy bears and glass angels were offered to parents who lost a child…

It also has brought me several times back to Montréal to be closer to my family…

2010 marks the first time I received a scholarship from CORD to attend a rare disease conference as the founder of Everyone Loves Little Angels and the PVNH support group…
And my first Action Day on Parliament Hill...

And among the best that came out of 2010 were the friendships, both old and new… Friendships that stand the test of time. Friendship that pick up where they were lost at sea anywhere from 20 to 30 years ago - and new friendships based on the strongest bonds… the love of a parent… the commonality of a rare illness…

So here comes 2011… So long 2010…

And aside from wishing my family and my friends nothing but good health, I am making exception this year and breaking tradition - wishing something for me… A good donor with a special egg… Just one… that takes… And for Ella… enough kind souls to join together to offer a Make-A-Wish in her honour by the time her 3rd memorial birthday comes…

ELLA - Everyone Loves Little Angels

Tuesday, December 14, 2010

ELLA's Teddy Program



I was of one the "lucky" ones...
Compared to others in my situation...

You see, I was "fortunate"...
For the fact that because Ella lived...
Almost 8 months...
I did not go home empty-handed...

Although I did go home an orphaned mom...

I was "fortunate" enough...
To have almost 8 months...
Of teddy bears...
Clothes...
Books...
Pictures..
Videos...
Music...
And other toys...

Which when panic strikes...
Keep me for going insane...

I have a little bit of Ella's life...
With me...
In my heart...
In her room...
All over my house...

But not everyone has this "chance"...
And so, when I heard...
Of this program existing in Australia...
I knew I what I had to do...

It is a simple gesture...
A teddy bear...
The basic and yet ultimate...
Newborn's gift...

Almost everyone receives...
At least one as a gift...
When a child is born...
Or even before the miracle of life...
Begins...

Ella did...
Flocon Flake...
A cuddly polar bear teddy...
From her auntie A...

And as a child earn his or hers wings...
Whether at home...
In a hospital neonatal unit...
In a hospice...

Whether that child is...
2 minutes old..
3 weeks old...
6 years old...
Or 18 years old...

As a parent is left orphaned...
The comfort of a teddy bear...

A King Louie monkey...
A pink Hungry For Love hippo....
Or an ICU The Cat stuffie...

Is all you need...

To get you through THE moment...

The moment where the ground...
Opens up from under your feet...

The moment that panic sets in...
At the abberation of your loss...

The moment that you...
Once again realize...

That this IS it...

ELLA's Teddy Program...
Is just that...

A way to pay it forward...
Another mean to help myself...

By getting someone else as well...
Through THE moment...

Because I am "fortunate"...

And because I know...
How a teddy bear...
And a piece of my angel...
Gets me through my days...

And my nights...

Long live ELLA's teddy program...
Long live the memory of Ella...
And every other angel...
Being honoured...

As new teddy bears...
And carefully chosen small angel ornaments...
Will be offerred...
To bereaved parents...
On their behalf...

ELLA - Everyone Loves Little Angels

Sunday, October 24, 2010

"Death is Nothing At All" aka "What is Death" by Henry Scott Holland (1847-1918)


I came across this poem tonight...
And it resonated with me...
It's as though Ella was speaking to me...
I'd like to share it with you...

Death Is Nothing At All

Death is nothing at all.
I have only slipped away into the next room.
I am I and you are you.
Whatever we were to each other,
That we still are.

Call me by my old familiar name.
Speak to me in the easy way
Which you always used.
Put no difference in your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word
That it always was.
Let it be spoken without affect,
Without the trace of a shadow on it.

Life means all that it ever meant.
It is the same that it ever was.
There is absolutely unbroken continuity.
Why should I be out of mind
Because I am out of sight?

I am waiting for you,
For an interval,
Somewhere very near,
Just around the corner.

All is well.

ELLA - Everyone Loves Little Angels

* The black and white photo of Ella being kissed by me, her maman, is copyright work from Jane Eaton Hamilton, photographer for Now I Lay Me Down to Sleep. Please do not copy or share it.

Monday, August 16, 2010

Feeling Safe After Being Robbed


I've kept myself busy for weeks...
Preparing for Ella's 2nd memorial birthday...
Busy to stay focused...
Busy to feel safe...

For I've been robbed...

Just as it happened 20 years ago in Québec City...
When I shared a condo with my sister...
And 12 years ago...
When my loft was again broken into in Montréal...
I carry this fear...

This fear of not feeling safe...

It can show up in the middle of night...
When a strange noise is heard...

It is still there, after no many years...
Always...
In a corner of my being...

Except this time...
Since March 2009...
This fear occupies my whole self...
Because the fear is very real...

For I have been robbed...

Ever present...
I never know...
When it will strike...
Or what will set it off...

Catching a glimpse of a teenager...
Shaking her head with a non-verbal "nuh huh, no way"...
And eyes that say...
"If you buy this,I am no longer your daughter"...
As she looks at her mom with a tender smile...

You know the look...
That both my sister and I...
Have given our mom at least once...

The same one you gave yours...
When she was trying to shop...
For something to make herself seem...
More hip...

I have been robbed...

Hearing the rolling gutteral sound...
Of my baby's laughter...
As tickles...
Invades her little body...

I have been robbed...

While riding the city bus...
On a Saturday evening...
Seeing your 4-year old kid sport...
Huge butterfly wings...
And talk non-stop...
Telling a teenager on the bus...
About how wonderful...
Her friend's birthday party was...
With a bonus...
"Nice talking with you"...
As the stranger exits the bus...

I have been robbed...

Planning that trip...
The one every mother-daughter must go on...
Deciding on every little detail...
That drives you even closer together...
That trip...
You will always remember...

I have been robbed...

The family picnic at the beach...
With tons of food...
A barbecue...
And maybe even some balloons...
When games are played...
Then a toe is dipped first...
And the entire body soon follows...
Into the ocean...

I have been robbed...

The utter sense of pride...
Or of concern...
You get when your little one...
Takes a first step...
Or breaks a body part...

I have been robbed...

That look of sheer joy...
Or is it pure fear...
As she sits on a horse...
For the very first time...
Just like Maman did...
When she was a toddler...

I have been robbed...

The bottoms line is most people...
May only carry such a fear...
Into the corner of their being...
After being robbed of their material belongings...

But parents of angels, like me...
Will go through life...
Day in and day out...
Feeling like their gut was ripped...
Right out of their body...

Robbed of the gift of life...

Robbed of their unconditional love...

Robbed of memories to be...

Robbed of that photo on Santa's lap...

Robbed of the first tooth fairy loonie...

Robbed of the swimming classes...
And the pink tutu twirls...

Robbed of that first day of kindergarden...
With tears flowing as leave...
And smiles all around...
As I later pick her up...

Robbed of that first walk together to grade school...

Robbed of "that" look and impatiently tapping foot...
That yells out "Mom, I am old enough now"...

Robbed of turning a blind eye...
On nocturnal escapes in the moonlight...

Robbed of passing on the keys to the car...

Robbed of waiting up all night long for her to come home...
Having honestly forgotten about her curfew...

Robbed of seeing my daughter...
Choose the profession that makes her happy...
And not the one she thinks...
We would want her to be...

Robbed of witnessing my daughter...
Walk down the aisle one day...
Or better yet...
Throw herself an "un-wedding" party...

Robbed of seeing her growing belly...
And little feet kicking left and right...

Rob of meeting my grandchild...
And her watching grow...
Into the best person of all...
The person she chose to be...

Parents like me will forever face...
This fear of being brought back in that moment...
When their loved one was taken away...

Whether at the beach, strolling...
Hoping to put the day's stress and worries away...

Whether at the mall...
On public transit...

Chatting with friends and even family...

Waching a commercial on TV...

It is undeniable...
And it is clear...
That I have been robbed...
Of my love...
My life...
My soul...

I am the mother of an angel...
And I will never be safe...
Nor do I ever want to be...

But boy would I ever trade...
My loss with...
Anyone who thinks...
I will "get over" it...

You never get over grief...

You may learn to live with it...
You just find ways to cope...

Until that moment you fear...
Comes right at you...
And brings you back to the moment...
Where you realize...

I have plainly and simply...
Been robbed...

ELLA - Everyone Loves Little Angels

Sunday, August 15, 2010

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
A 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

Saturday, August 14, 2010

Blessing for Ella's Birthday



As I sit to write down my thoughts
It occurs to me that I have not
Stopped long enough in the last week
To actually say thank you

Thank you to friends and family
For their love and support
Today and every day

Thank you to my friend Helene
And to her staff
Not only for donating her yoga studio
But also for hosting a class by donation
So that I can help families at BC Children's Hospital
Live a more comfortable life

Thank you to Danielle
For the gift of beautiful flowers
And that of her presence
Yoga-ing & celebrating Ella
On her birthday

Thank you to my Facebook crew
For sending wishes and words of support
For what I anticipated would be a tough day

Thank you to my PVNH families
For your words of kindness

Thank you to my friend Emma...
For donating some of Jonah's favorites...
Books which will be offered to families...
At Children's Hospital this week...

Thank you to Mother Nature
For sending me some rain
On Ella's birthday
To make sure I took time to stop
Relax
And just breathe

As I sit and write down my thoughts
All I can say is thank you
To all of you
And most importantly
Thank you
To Ella for playing
With Maman on your 2nd birthday

ELLA - Everyone Loves Little Angels

Sunday, August 1, 2010

Gratitude on August 1st, 2010


Someone who recently came into my life...
Told me today...
You cannot have gratitude without grief...
And you cannot experience grief without gratitude...

I could not agree more...

Today...
Just like yesterday...
I am grateful...

I am grateful for many...
Many people...
Many moments...
Many memories...

I am grateful for one...
One angel...
One love...
One life...

Today, and everyday, I do...
Count my blessings...
And express...
My gratitude...

But not until today...
Did I make it this public...

And so it goes...

Today I am grateful for the sun...
The warmth...
The peace I felt...
After a good cry...
By my daughter's grave...

Today I am grateful...
For my mom...
And my dad...
For my sister...
My brother...
Their spouses...
And chidlren...

Today I am grateful...
To have held a sweet baby boy...
Heard him laugh...
Seen him play...

Today I am grateful...
For friends who know...
Just how to lend an ear...
And bring back my waivering faith...
To show me that I am strong...

Today I am grateful...
Fo strangers who show support...
By joining in a cause...
And paying it forward...

Today, I am grateful for my amazing friend Yvonne...
And her husband Bart Bridge...
And for Wanda and Ivan Ravnic...
For Deborah Power-Demille...
And Francesca Benedetti...
And Deby Gulleckson...
And for Arlene and Dwaine Bridge...
All of whom kindly donated in memory of Ella...

Today, I am grateful...
For Nikki, on the other side of the world...
Who's encouraging words always...
Lift me up...

Today, I am grateful for Helene and the crew at Yogacara...
For Simone and the team at Solarice Spa...
Both of whom are offering their services...
To raise funds for BC Children's Hospital...

I am grateful for my friend Jennifer Terzi in Ottawa...
and for my friend Marie-Paule Dupont in Gatineau...
Who not only support me from afar...
But generously donate in memory of my girl...

Today I am grateful...
For so many wonderful people...
Who give me the strength...
To see another day...


ELLA - Everyone Loves Little Angels