tag:blogger.com,1999:blog-31646202547725727012011-11-01T21:31:26.910-07:00This blog is dedidated to Ella, our little angel, who makes us smile and believe in life. Ce blogue est dédié à la mémoire d'Ella, ce petit ange qui nous fait sourire et aimer la vie.Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.comBlogger481100tag:blogger.com,1999:blog-3164620254772572701.post-5229112500118846872011-03-27T23:23:00.000-07:002011-03-27T00:29:04.861-07:00<a href="http://1.bp.blogspot.com/-Y1GBtxIfBTA/TY7SM8DtY7I/AAAAAAAAALw/VgYhN4-RG68/s1600/untitled.bmp"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 149px; height: 200px;" src="http://1.bp.blogspot.com/-Y1GBtxIfBTA/TY7SM8DtY7I/AAAAAAAAALw/VgYhN4-RG68/s200/untitled.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5588635307335312306" /></a> Look how far we've come, Baby...<br />You and me...<br /><br />Can you see what you inspired, Baby?<br /><br />A movement...<br />To pay it forward....<br /><br />A network ...<br />To show we care for sick children...<br /><br />A place...<br />Of support for bereaved parents...<br />Who like me...<br />Lived through a kiddo being taken from them...<br />So tragically...<br /> <br />Look how far we've come, Baby...<br /><br />Thousands and thousands of dollars raised...<br />Teddies and angels offered as comfort...<br />Costumes... <br />Books...<br />Games...<br />And Stuffies too...<br /><br />To bring out a smile...<br />A smile that warms up the heart...<br /><br />Just like yours did and continues to do...<br /><br />Look how far we've come, Baby...<br />You and me...<br /><br />A diagnosis...<br />An actual name for what happened...<br />To you, Baby...<br /><br />And from there...<br />A group which united...<br />A world of rare families...<br />As we are too...<br />You and me...<br />Supported by moms, dads and friends..<br />Who know so well...<br />What a brave little girl you are...<br /><br />Loved and cherished always...<br />By families and friends...<br />Who commemorate...<br />Your beautiful spirit...<br />Every day...<br /><br />Look how far we've come, Baby...<br /><br />One website...<br />Two websites...<br />Online support groups...<br /><br />A research case about to be published...<br />And soon, Ella's Wish to be granted...<br /><br />Look how far we've come, Baby...<br />You and me...<br /><br />Your story generates tears...<br />But more importantly...<br />It's touching hearts...<br /><br />And it also is reaching the ear...<br />And grabbing the attention...<br />Of researchers and geneticists...<br />Who see our vision...<br />Who hear our goal...<br />And believe in it too...<br /><br />Look how far we've come, Baby...<br />You and me...<br /><br />Can you see what you inspired, Baby?<br /><br />Can you tell how wide...<br />Your wings are spreading?<br /><br />Look how far we've come, Ella...<br />You and me...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-522911250011884687?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-21746359267899084802010-11-08T21:41:00.000-08:002010-11-09T08:29:11.243-08:00<a href="http://3.bp.blogspot.com/_g1qWY5Uuho0/TNjuuLeIG2I/AAAAAAAAAIw/3gV-czfuMxg/s1600/76318_10150293323990088_708875087_15714037_307373_n.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="http://3.bp.blogspot.com/_g1qWY5Uuho0/TNjuuLeIG2I/AAAAAAAAAIw/3gV-czfuMxg/s320/76318_10150293323990088_708875087_15714037_307373_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5537438218972568418" /></a><br />So it is clear by now...<br />That my angel.. <br />My baby girl...<br />Had a will of steel...<br />And a heart of gold...<br />And definitely...<br />More than one trick...<br />Up her short little sleeves...<br /><br />And so it should not come...<br />As a shock to any...<br />That even after...<br />Surprising everyone...<br />At Canuck Place last night...<br />That she had still...<br />One more mischief...<br />In store for all of us...<br /><br />It turns out that there was...<br />Indeed a nenuphar...<br />And a lantern last night...<br />That both bore Ella's name...<br /><br />A waterlilly for Ella...<br />And a lantern for Ella Jacqueline...<br /><br />The waterlilly...<br />Came home with me...<br />But the lantern...<br />Stayed at Canuck Place...<br /><br />Simply because...<br />There was a tenee tiny...<br />Little doubt in my mind...<br /><br />And more so...<br />Because I needed to make sure...<br />Another parent would not be looking...<br />For "their" Ella's lantern...<br /><br />So when I came home last night...<br />I emailed Laura at Canuck Place...<br />And told her if after verification...<br />They confirmed that Ella...<br />And Ella Jacqueline...<br />Were indeed one and the same...<br />I would not mind taking home...<br />The lantern for my family to enjoy...<br /><br />I did not expect...<br />The answer I received...<br /><br />That last night after the event...<br />All lanterns were dismantled...<br />Cleaned...<br />And packed up...<br /><br />Including Ella Jacqueline's...<br />For yet another event...<br />To happen a year from now...<br /><br />But upon a last walk through...<br />In the gardens this am...<br />Laura came across..<br />This one, sole...<br />Un-named...<br />Lantern...<br /><br />I picture it...<br />Still hanging...<br />As though waiting...<br /><br />And I can swear in that moment...<br />Of reading Laura's email ...<br />I could hear Ella giggle...<br />Loud and clear...<br /><br />And say...<br />"Maman I made sure...<br />You did get to take the lantern home...<br />As you so wished to do...<br />For grand-maman to enjoy..."<br /><br />It was even more comforting...<br />To have Laura tell me...<br />She had kept...<br />Ella Jacqueline's name tag...<br /><br />Just as I know in my heart...<br />That Ella continues...<br />To illuminate my day...<br />Every day...<br /><br />I love how...<br />Determined and driven...<br />She was...<br />And still is...<br /><br />And how...<br />She goes out of her way...<br />To make sure...<br />I never forget it...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2174635926789908480?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-23412956581835774742010-11-07T22:30:00.000-08:002010-11-08T22:47:56.324-08:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/TNjuhLNfccI/AAAAAAAAAIo/Q6_xHzICWZw/s1600/DSCF4217.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/TNjuhLNfccI/AAAAAAAAAIo/Q6_xHzICWZw/s320/DSCF4217.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5537437995564495298" /></a><br />If you've followed my journey<br />You know that at this time last year<br />My girl played a huge trick on me<br />On a day where I became so emotional<br />At an event put together by Canuck Place<br />Because I was remembering...<br />Remembering Ella.<br /><br />Why so emotional, you say?<br />Simply because it was, on that day,<br />And in that moment<br />As though I was reliving Ella's funeral<br />And allowing myself to actual live it.<br /><br />I had been so focused <br />And determined to be strong<br />on April 7, 2008.<br /><br />I kept it together<br />So much so<br />That I forgot to live in the moment.<br /><br />I was frozen in time<br />And though I listened to every word<br />Apoken that day<br />It was almost like they were not registering.<br /><br />And so a year ago, as I waited for my friend Linda<br />Who had agreed to be my rock once again<br />I started to panic<br />And by the time the ceremony had started<br />I was in tears.<br /><br />An hour later,<br />Linda and I were walking through<br />Canuck Place gardens and laughing...<br />Laughing so hard!<br /><br />And so tonight, as I went to <br />Remembering Our Children<br />To remember Ella<br />Ella in all her glory<br />And Ella in all her mischief<br />I kept thinking<br />How can she pull it off?<br /><br />And throw me off my game<br />As she did last year<br />And bring me from buckets of tears<br />To belly laughs that hurt your cheeks<br />In a matter of a few minutes.<br /><br />True to form<br />Ella did not disappoint.<br /><br />As I stood to go light a candle <br />In her memory<br />The glow globe given to us by Canuck Place <br />And which stood by me,<br />By my bum actually,<br />Lit up full of colours.<br /><br />She lit up my bum!!!<br /><br />And again in that moment<br />I went from tears <br />To a huge smile.<br /><br />But that was only the beginning...<br /><br />As Linda and I walked the Canuck Place gardens<br />My friend Shauna came up to inquire if I'd found Ella's lantern<br />And asked if Jacqueline was indeed her middle name.<br /><br />I quickly warned her "don't tell me where she is!"<br /><br />Minutes later<br />Laura who works at Canuck Place<br />Said some of the kids like Ella<br />Were this year remembered on <br />What we call in French<br />A nénuphar*.<br /><br />And so, about a foot away<br />From where her lantern stood in the dark last year<br />Linda and I found Ella's nénuphar.<br /><br />And this time, the tealight was still lit.<br /><br />I almost felt disappointed <br />To find her so quickly<br />Until I remembered Shauna's comment...<br /><br />The nénuphar only said Ella...<br />Not "Ella Jacqueline"!<br /><br />So we found Laura<br />And asked her if there was another Ella.<br /><br />"No", she said, "there is only your Ella".<br /><br />And both Linda and I giggled<br />At the thought that Ella once again<br />Tricked the Canuck Place team.<br /><br />So where is her lantern?, I asked Shauna.<br /><br />"Are you sure you want to know?" <br />Yup, gotta see that lantern!<br />"Right there in the bushes"...<br />As she pointed.<br /><br />Linda and I walked over<br />And still could not find her<br />It took Laura, Linda, myself and another CP volunteer<br />Another good 5 minutes<br />To finally find the lantern.<br /><br />And there in all her glory<br />Was a beautiful lantern<br />For Ella Jacqueline<br />Under a clear, crisp fall evening<br />Shining bright<br />On Ella's 27th month birthday.<br /><br />* 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 :)<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2341295658183577474?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-67744817818202612932010-10-28T23:21:00.000-07:002010-10-29T08:30:54.888-07:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/TMpwV4WuYjI/AAAAAAAAAIA/BAACBPqyEVE/s1600/Pose+peace.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 277px; height: 320px;" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/TMpwV4WuYjI/AAAAAAAAAIA/BAACBPqyEVE/s320/Pose+peace.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5533358613385339442" /></a><br />On October 27, 2010, I went to work with a heavy heart... as I do, every 27th of every month.<br /><br />19 months ago, I said goodbye to my girl, Ella.<br /><br />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".<br /><br />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.<br /><br />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...<br /><br />If you have followed my journey, you know that Ella sends me ladybugs. In the weirdest places, with the outmost perfect timing.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Thanks bubba, maman loves you!<br /><br />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 :)<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-6774481781820261293?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com1tag:blogger.com,1999:blog-3164620254772572701.post-39025492998776857672010-10-24T11:02:00.000-07:002010-10-27T00:14:16.742-07:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/TMfOt-DN-ZI/AAAAAAAAAH4/vamLzs9xJe0/s1600/IMG_0444.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/TMfOt-DN-ZI/AAAAAAAAAH4/vamLzs9xJe0/s320/IMG_0444.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5532617956393875858" /></a><br />On Oct. 24, 2008...<br />Ella started to travel the world...<br /><br />A hop on on a plane...<br />A stop in Winnipeg...<br />A much anticipated visit...<br />To meet her granpapa Kumar...<br />And her grandmamaman Kamla...<br />Her great-cousins and their families...<br /><br />It was meant to be a month long trip...<br />Taking us...<br />From Winnipeg to Montréal...<br />To meet my side of the family...<br />And for me to enjoy my time off with my baby girl...<br /><br />I still remember how Ella was quiet...<br />And happy, really...<br /><br />While I stuggled to get answers...<br />For the problems I already knew we were facing....<br /><br />Ella had gone in the day before... <br />For a second lung xray...<br />And by some stroke of luck...<br />Or rather what I call now...<br />Writing in the sky...<br />Ella was seen by the radiology technician....<br />Who had performed the first xray 10 days earlier..<br /><br />And he remembered...<br />Ella...<br />My Ella...<br /><br />Long story short...<br />There was indeed progress of the wrong kind...<br />In her little lungs...<br /><br />And so I desperatly tried to get...<br />Radiology and paediatry to talk...<br />Even minutes before we boarded our plane...<br /><br />Our flight took off...<br />With Ella in my arms...<br />Peaceful...<br /><br />She fed...<br />And she slept...<br />In my arms...<br />And in her baby seat...<br /><br />She played with my hair...<br />And smiled to flight attendants...<br />Oblivious to my worries...<br /><br />Which came crashing in...<br />Minutes after we landed...<br /><br />"Ms. Dupont, this is Dr. H...<br />We need you to come back to Vancouver...<br />To run further tests"...<br /><br />As my heart sank...<br />I remember grabbing a pen and paper...<br />And noting on it...<br />A list of details... <br />I knew I needed to remember...<br />As my brain shut down...<br /><br />My baby was sick...<br /><br />I already knew it...<br />I could not prove it...<br />But my gut had yelled it...<br />From the day she was born...<br /><br />I also clearly recall...<br />Asking Dr. H...<br />Who was requesting our immediate return...<br />If a couple of days would make a difference...<br /><br />I had to take my girl...<br />To Montréal to meet my family...<br />Her family...<br /><br />I did not know what the answer would be...<br />And I honestly can't say I would have listened...<br />Had the doc said don't go to Montréal...<br /><br />It's as though I knew...<br />That it would be...<br />Ella's one and only...<br />Trip back East...<br /><br />So we went to Montréal...<br />And when we arrived at my parents' place...<br />I was faced with telling Ella's other grandma...<br />Grand-maman Gigi...<br />My own maman...<br />And grand-papa Jacques...<br />That Ella was sick...<br />And that we would not stay...<br />As we had planned to...<br /><br />Instead, we made the best...<br />Of the little time we had...<br /><br />Ella met her cousins...<br />Samia and Renaud...<br />And she met my friend Anick...<br /><br />She played with grand-maman Gigi...<br />She was photographed by grand-papa Jacques...<br />And actually was the superstar...<br />On a photo shoot...<br />Organized by her uncle Martin...<br /><br />Ella also was pampered...<br />By aunty Marie-Claude...<br />To whom I later found out...<br />She gave a big scare...<br />Because of her laboured breathing...<br /><br />The only ingredients missing...<br />Were my brother and his wife...<br />Who at the of our visit...<br />Were away on a trip...<br /> <br />It would have been a month...<br />Of time with family...<br />With friends...<br />With at least a visit to Québec City...<br />And another one to Ottawa...<br /><br />It would have been enough time...<br />For Ella to meet her uncle Jacques-André...<br />And auntie Janic...<br /><br />And then after that month...<br />Visits to Yellowknife...<br />And Trinidad...<br />Would have been complemented...<br />Possibly by a trip overseas... <br /><br />At least that was the plan...<br /><br />Fast forward 2 years...<br />And tomorrow, October 27th, 2010...<br />Will be 19 months...<br />Since I lost Ella...<br /><br />And yet...<br />Ella has travelled the world...<br /><br />Ella <em>still </em>travels the world...<br /><br />Ella lives in the heart of friends in Ireland...<br />And Ella brigthens the days of moms in the UK...<br /><br />Ella inspires families in the U.S....<br />And Ella shines in Germany...<br />As well as in many, many other locations...<br />Around the globe...<br /><br />She has brought together...<br />Families from several countries...<br />Who just like ours...<br />Have a common diagnosis for this PVNH rare disease...<br /><br />And so through her passing...<br />And in the mission she left me...<br /><br />Ella not only travels the world...<br /><br />But she lives in <br />British Columbia....<br />Québec...<br />Manitoba...<br />Ontario...<br />PEI...<br />Alberta...<br />Northwest Territories...<br />Trinidad...<br />USA...<br />Australia...<br />New Zealand...<br />Ireland...<br />Germany...<br />U.K....<br />France...<br />Belgium...<br />Austria...<br />South Africa...<br />Poland...<br /><br />And Ella continues...<br />To travel the world....<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3902549299877685767?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-8797528290613540662010-08-23T02:41:00.000-07:002010-08-24T23:01:09.311-07:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/THSxn0ynwBI/AAAAAAAAAG8/g8LwfUWq61s/s1600/IMG_0052.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/THSxn0ynwBI/AAAAAAAAAG8/g8LwfUWq61s/s320/IMG_0052.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5509223541924937746" /></a><br />Her name is baby K...<br />And on Saturday, it's as though she showed me the way...<br /><br />At a full 18 months old...<br />She is almost 7 months younger than my girl...<br />(there goes that lucky 7 again)...<br /><br />And although we started the day as strangers...<br />K has become a close friend...<br /><br />She is the daughter...<br />Of a friend of Ella's uncle D...<br />And a daddy's girl to boot...<br /><br />Sporting blond hair and blue eyes...<br />She could not be further apart...<br />From my own baby girl...<br />From my angel...<br /><br />And that is probably why...<br />I was able to so openly...<br />And so carefully.. <br />Without a care in the world...<br />Spend quite a bit of time...<br />Getting to know baby K...<br /><br />As she sang...<br />And danced....<br />And talked... <br />Blew kisses...<br />And bubbles too...<br /><br />At aunty Trish...<br />And at her dad...<br /><br />As we spent the day...<br />Getting acquainted...<br />Baby K...<br />Helped me feel whole...<br />Again...<br /><br />Her breath so calculated...<br />Her hands so soft...<br />Her smile so bright...<br />She is one little determined little girl...<br /><br />And after a day full day...<br />Spent so preciously being a toddler...<br />Baby K fell asleep...<br />For the 2nd time...<br />As I took her out for a stroll...<br /><br />Far from the noise...<br />Far from the crowd...<br />On the quiet streets...<br />So that I could hear her...<br /><br />Breathe...<br />Talk...<br />Sing...<br />And just be...<br />Baby K...<br /><br />Blessings to you Baby K...<br />For helping me figure out again where my heart is...<br />And where it belongs...<br /><br />Blessings to you...<br />And your family...<br /><br />Blessing for D & Z...<br />And their lovely family...<br />For taking such good care of me...<br />For their friendship...<br />And for helping me through tough days...<br /><br />Blessings for a busy weekend...<br />Spent outside being carefree...<br />And for good cries when I needed them...<br /><br />Blessing to new friendships...<br />Laughter...<br />And smiles...<br /><br />Blessing for uncle D & R...<br />For being so generous...<br />And weaving in...<br />Ella's mission...<br />Into Baru's anniversary...<br /><br />Blessings for such a lovely weekend...<br />Spent doing a lot of nothing...<br />And recharging my heart...<br />For yet another day...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-879752829061354066?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-91236108378081368512010-08-15T00:38:00.001-07:002010-08-15T09:30:23.011-07:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/TGeYfu_uJ7I/AAAAAAAAAGk/U3sFvGAPrGE/s1600/Ella0094.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 256px; height: 320px;" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/TGeYfu_uJ7I/AAAAAAAAAGk/U3sFvGAPrGE/s320/Ella0094.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5505536740442384306" /></a><br />‎2 years ago on Aug. 14<br />I was due to welcome <br />Ella in this world. <br /><br />Instead I am left<br />Celebrating the life of an angel<br />My angel,<br />Ella<br /><br />Tonight, on August 14,<br />I came across<br />this amazing poem <br />I will share it with you.<br /><br />I Carry You In My Heart by E E Cummings<br /><br />I carry your heart with me <br />(I carry it in my heart) <br />I am never without it <br />(anywhere I go you go, my dear; and whatever is done<br />by only me is your doing, my darling)<br /><br />I fear no fate <br />(for you are my fate, my sweet)<br />I want no world <br />(for beautiful you are my world, my true)<br />and it's you are whatever a moon has always meant<br />and whatever a sun will always sing is you<br /><br />Here is the deepest secret nobody knows<br />(here is the root of the root and the bud of the bud<br />and the sky of the sky of a tree called life; which grows<br />higher than the soul can hope or mind can hide)<br />and this is the wonder that's keeping the stars apart<br /><br />I carry your heart <br />(I carry it in my heart)<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-9123610837808136851?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-22324202541253608902010-07-05T22:44:00.000-07:002010-07-06T00:09:27.086-07:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/TDLWN7eNkjI/AAAAAAAAAFA/83eEsLWqpMc/s1600/IMG_0149.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/TDLWN7eNkjI/AAAAAAAAAFA/83eEsLWqpMc/s320/IMG_0149.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5490686430509109810" /></a><br /><br /><br />In exactly 32 days...<br />I would have celebrated...<br />The life of a princess...<br />On your second birthday...<br /><br />In exactly 32 days...<br />I am left instead...<br />With honouring...<br />Your second memorial birthday...<br /><br />A day that would have included tiaras...<br />Dress up... <br />Pretty pink shoes...<br />Magic wands...<br />And likely a tea party...<br /><br />Is now a day to fundraise...<br /><br />Fundraise for families like ours...<br />Who have their world turned upside down...<br />When their child becomes ill...<br />And fights for life...<br /><br />Fundraise in memory of an angel...<br />For families like mine...<br />Who just as I...<br />Never knew there was...<br />A rare disease...<br />Running through their blood...<br /><br />Fundraise for moms and dads...<br />Who find themselves...<br />In a whirlwind of grief...<br />As parents without a living child...<br /><br />In exactly 32 days...<br />I want to be having...<br />A princess party...<br />For my princess Ella...<br /><br />In exactly 32 days...<br />I will...<br />Celebrate the life...<br />Of a princess...<br /><br />My princess...<br /><br />And in exactly 32 days...<br />I know that up in the sky...<br />Right there upon your cloud...<br /><br />You will send me sunshine...<br />Songs...<br />And music...<br /><br />You'll twirl for me...<br />Wearing your pink gown...<br />Pink slippers...<br />Your sweetest smile...<br /><br />And of course, your princess tiara...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2232420254125360890?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com1tag:blogger.com,1999:blog-3164620254772572701.post-85039248309691428482010-06-25T21:45:00.000-07:002010-06-26T12:14:26.305-07:00It's been more than 3 months... <br />3 long months and yet they've gone so fast...<br /> <br />3 months since I found the courage... <br />And the energy... <br />To put thoughts to computer... <br />But tonight... <br />It is time... <br />Because... <br />"I'm listening Ella"...<br /><br />After a whirlwind of days up and down... <br />Days where I hit the lowest of lows... <br />Lower than what I'd experienced... <br />Since your last breath... <br /><br />Days where I barely had a moment to think... <br />About you... <br />Me... <br />Or anything else... <br /><br />Days where I felt like just giving up... <br />Days when I got angry... <br />Real angry... <br />At your cemetery's management at Forest Lawn... <br />For actions so uncompassionate... <br />And so utterly disrespectful... <br /><br />Days where my heart filled with sorrow... <br />For other families experiencing... W<br />hat we'd gone through... <br />Just a year earlier... <br /><br />Days where my health... <br />And inability to make us a family again... <br />Became another source of stress... <br /><br />Days when my heart filled with pride... <br />At how many people love you... <br />And remember you... <br /><br />And days when my family's state of health... <br />Also became a source of worry... <br />And yet another reason to fight... <br />To live... <br /><br />I'm listening Ella... <br /><br />Through it all... <br />Through those last 3 months... <br />Just like it's been... <br />For the last 15 months... <br /><br />I am listening Ella... <br /><br />I am listening... <br />To the sound of your voice... <br /><br />I am listening to the songs of birds... <br /><br />I am listening to the sounds of waterfalls... <br />And that of raindrops... <br /><br />I am listening to parents... <br />Who have children affected by your disease... <br />And whom have questions without answers... <br />And are in need of support... <br /><br />I am listening to Ella playing... <br />On the radio... <br />And in my head... <br /><br />I am listening... <br />And always will be... <br />To your messages... <br />Which show up at the most unexpected times... <br />In the most unorthodox ways... <br /><br />Beyond Ella belting tunes at the hospital coffee shop... <br />Nearly every time I visit... <br />To Ella coming on the speakers... <br />As I tell a friend a story about you... <br />To the violonist diving into... <br />One of our songs on the corner of the street... <br />And to the sound of the summer breeze... <br /><br />I am listening Ella... <br /><br />And tonight... <br />Again... <br />You talked to me... <br /><br />It did shake me to the core... <br />And swept my breath away... <br /><br />It took me a few minutes to understand... <br />But it made perfect sense... <br /><br />A woman... <br />Standing outside the stall I was in... <br />Saying... <br />"I'm listening Ella"... <br /><br />And minutes later... <br />A beautiful little girl... <br />Returning to her restaurant seat... <br />Flanked by her mom... <br />The woman I'd seen moments earlier... <br /><br />I told your uncle Dave... <br />And he agreed I probably had a near attack right there... <br />We both got a good laugh... <br />At how your "Listen to me Maman" statements... <br />Continue to get throught to me... <br /><br />And for ever as I shall live... <br />For ever as I shall breathe... <br />And until my death reunites us... <br /><br />"I am listening Ella"... <br /><br />ELLA - Everyone Loves Little Angels<br /><object width="320" height="266" class="BLOG_video_class" id="BLOG_video-17680edc62f4d5c3" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"><param name="movie" value="http://www.youtube.com/get_player"><param name="bgcolor" value="#FFFFFF"><param name="allowfullscreen" value="true"><param name="flashvars" value="flvurl=http://v17.nonxt6.googlevideo.com/videoplayback?id%3D17680edc62f4d5c3%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1331441116%26sparams%3Did,itag,ip,ipbits,expire%26signature%3D6F98D43DB67AE7BC940B9E16730E071FD158F5F4.3CC86759DDBFBA4789177ADF41EF9729C93A1BD4%26key%3Dck1&amp;iurl=http://video.google.com/ThumbnailServer2?app%3Dblogger%26contentid%3D17680edc62f4d5c3%26offsetms%3D5000%26itag%3Dw160%26sigh%3DEBh-nTmsFeNf1lKLJrxHqzq97XI&amp;autoplay=0&amp;ps=blogger"><embed src="http://www.youtube.com/get_player" type="application/x-shockwave-flash"width="320" height="266" bgcolor="#FFFFFF"flashvars="flvurl=http://v17.nonxt6.googlevideo.com/videoplayback?id%3D17680edc62f4d5c3%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1331441116%26sparams%3Did,itag,ip,ipbits,expire%26signature%3D6F98D43DB67AE7BC940B9E16730E071FD158F5F4.3CC86759DDBFBA4789177ADF41EF9729C93A1BD4%26key%3Dck1&iurl=http://video.google.com/ThumbnailServer2?app%3Dblogger%26contentid%3D17680edc62f4d5c3%26offsetms%3D5000%26itag%3Dw160%26sigh%3DEBh-nTmsFeNf1lKLJrxHqzq97XI&autoplay=0&ps=blogger"allowFullScreen="true" /></object><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-8503924830969142848?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-76127994755453978882010-03-20T20:58:00.000-07:002010-03-20T23:00:34.167-07:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/S6Wwr44uSgI/AAAAAAAAAEo/Jh_Sq2O_o3s/s1600-h/IMG_0725.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 310px; height: 320px;" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/S6Wwr44uSgI/AAAAAAAAAEo/Jh_Sq2O_o3s/s320/IMG_0725.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5450957192053017090" /></a><br />For nearly a year now...<br />I've heard often...<br />How strong I am...<br />How generous I am...<br /><br />For nearly a year now...<br />I've been honouring my baby Ella's life...<br />By paying it forward...<br />In every way I imagine...<br />As best as I can...<br /><br />But before I knew how to do it...<br />There were two moms before me...<br />Who showed me the way...<br />Who taught me how...<br /><br />The first, I've never met...<br />But I heard...<br />She lost a child a few years ago...<br />A child who like Ella...<br />Was an ICU patient...<br /><br />That mom who does not know me...<br />Or knew of Ella...<br />Carefully put together...<br />Christmas gifts...<br />For moms in ICU...<br />Back in 2008...<br /><br />A red bag...<br />Some soft tissues...<br />A red heart ornament...<br />A notebook, and a pen...<br /><br />With it came a note...<br />Telling me how 3 years before...<br />She was herself in ICU...<br />With her son...<br /><br />And that through the Holidays...<br />Her thoughts would with be me...<br />With my child...<br />With my family...<br /><br />The heart hung by Ella's bed...<br />In the notebook...<br />I could not bring myself to write...<br />Except for two occasions...<br />One of which was to note...<br />"They think you're going to make it"...<br /><br />Fast forward three months...<br />And I meet a mom...<br />In ICU with her daughter...<br />Whose name also happens to start with an E...<br />Just like my baby's...<br /><br />Ella was in bed 18.<br />And E, her dad and her mother R...<br />Were our neighbours...<br /><br />And on the morning of March 19, 2009...<br />As my girl struggled so seriously just to breathe...<br />As I nearly lost my daughter...<br />R and her husband were one of the few people...<br />Who witnessed everything...<br />Who saw how close a call it was...<br />For Ella that day...<br /><br />Not because they wanted to...<br />But just because that's how things are...<br />When your child lies 3 feet away from another...<br />In an ICU with very few actual rooms...<br /><br />The following morning...<br />As she came in to spend the day with her daughter...<br />R walked over to me...<br />And handed me a gift...<br /><br />A coin...<br />A very special coin...<br />With a picture of an angel in the front...<br />And three words inscribed on the back...<br /><br />HOPE...<br />FAITH...<br />BELIEVE...<br /><br />And as she gave me this gift...<br />Her words were simple...<br /><br />When I am upset...<br />When I am scared...<br />When I am losing hope...<br />I must channel all my negative energy...<br />Into this coin...<br /><br />And then...<br />I must focus on charging myself up...<br />With positive thoughts...<br />With love...<br />With strength...<br />And with faith...<br />For Ella...<br />To feel it all through me...<br /><br />This amazing gift...<br />R gave me...<br />Has gotten me through...<br />Ella's last 8 days...<br /><br />It has gotten me through...<br />The dark days...<br />The rotten days...<br />The ongoing hurtful days...<br /><br />But it also has gotten me through...<br />The sunnier days...<br />The lovelier days...<br /><br />It continues to go with me...<br />Everywhere I venture...<br />It continues to show me...<br />That very simple actions...<br />Sometimes make a world of difference...<br />In someone's day...<br /><br />In someone's life...<br /><br />And so my strength...<br />Is not entirely my own...<br />Nor is my generosity...<br /><br />Both are inspired...<br />By moms I cherish in my heart...<br />By moms who just like I've learned how to do...<br />Simply...<br />Pay it forward...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-7612799475545397888?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-26616819656646804502010-03-19T22:38:00.000-07:002010-03-20T00:19:14.800-07:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S6R2qGGxudI/AAAAAAAAAEg/HNKrxjFNiEA/s1600-h/DSCF2556.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S6R2qGGxudI/AAAAAAAAAEg/HNKrxjFNiEA/s320/DSCF2556.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5450611914590763474" /></a><br />Breathe....<br />Simple...<br />Right?...<br /><br />Definitely for you...<br />Maybe for me...<br />But absolutely...<br />Not simple...<br />For Ella...<br /><br />On March 19, 2009...<br />Just as it happened a few times before...<br />Ella started to struggle to breathe...<br /><br />How can this be...<br />When your child...<br />Is hooked on a respirator...<br />24/7?...<br /><br />But this pattern...<br />Was too familiar to me...<br />So I saw it happen...<br />Right before my eyes...<br /><br />Her oxygen level dipped...<br />And came back up...<br />And it dipped again...<br /><br />Within seconds...<br />Her nurse was at bedside...<br />As Ella became agitated...<br />Her eyes telling me...<br />Something was very wrong...<br /><br />It was clear...<br />This was not good...<br />As she dipped...<br />Harder...<br /><br />By the time I realized...<br />What was truly happening...<br />Dr. Kent was with the RT...<br />Trying to move air...<br />In my daughter's chest...<br /><br />None was moving....<br />And I started to panic...<br />While the RT tried her best...<br />But no air was moving...<br /><br />I remember a demand...<br />Whether it was actually a command or a yell...<br />I can't recall...<br />But Heather, a senior RT, suddendly appeared...<br />To second Dr. Kent...<br /><br />Colour had changed...<br />Hands were about to perform...<br />Extraordinary measures...<br />As I pleaded to Dr. Kent...<br />"What can i do?"...<br /><br />"You've got to give us...<br />space to work"...<br /><br />And I see myself...<br />Like it was yesterday...<br />Take my touch away from Ella...<br />Bring my hands to my mouth in horror...<br />And back a few feet from my Ella...<br />To the foot of the bed...<br />So that the team of experts...<br />Could make air move...<br />Into her little lungs...<br /><br />I stood there...<br />For what seemed like an eternity...<br />But really it happened so fast...<br /><br />Lungs fnally started to let air in...<br />As drugs were administered to calm Ella...<br /><br />On March 19, 2009...<br />Dr. Kent and Heather...<br />Saved my daughter's life...<br /><br />On March 19, 2009...<br />I knew that Ella's time was near...<br /><br />On March 19, 2009...<br />A handful of people were witness...<br />To my ordeal...<br /><br />And of my daughter's struggle...<br />To perform what should be...<br />The simplest of acts...<br />One we all take for granted...<br /><br />On March 19, 2009...<br />Ella gave me the biggest sign...<br />That I needed to get ready...<br />And prepare her...<br />And me...<br />For what was to come...<br /><br />On March 19, 2009...<br />My daughter showed her maman...<br />What a will of steel she has...<br />And yet how fragile her little body was...<br /><br />On March 19, 2009...<br />I almost lost you again...<br />But on March 19, 2009...<br />You went on to give me a gift...<br /><br />The gift of 8 more days...<br />To love you...<br />Cuddle you...<br />Play with you...<br />Touch you...<br />Kiss you...<br />Feel you...<br />Know you...<br /><br />On March 19, 2009...<br />You sucked your little finger...<br />You counted your friends...<br />You danced...<br />You smiled for maman...<br />You touched my cheeks...<br />You continued to twirl my hair...<br /><br />On March 19, 2009...<br />You gave me the bestest of gifts...<br /><br />On March 19, 2009...<br />You breathed...<br />You lived...<br /><br />Je t'aime mon ange!<br />Maman<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2661681965664680450?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-22571803499151248502010-03-01T21:36:00.000-08:002010-03-01T21:54:58.760-08:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4yoHHtlWCI/AAAAAAAAAEY/dcIYPsO_QIg/s1600-h/2008-11-19+15-32-05.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 241px;" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4yoHHtlWCI/AAAAAAAAAEY/dcIYPsO_QIg/s320/2008-11-19+15-32-05.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5443910889866876962" /></a><br />It's official, the coundown has begun...<br />And I can't do anything about it...<br />Not, one single thing...<br /><br />Time won't stop... <br />No matter how clever I think...<br />I can be at willing it...<br /><br />The countdown was always there...<br />Ticking away...<br /><br />But with the shift from Feb. 28...<br />To March 1...<br />It has stuck me...<br />As the most cruel...<br /><br />With all of us now in March...<br />I can't escape it...<br /><br />Every day is a stronger reminder...<br />Than the next...<br />On what's to come on March 27...<br /><br />Every day is full of memories...<br />Some that were hopeful...<br />And then the reality of the events...<br />Hits me right in the face...<br /><br />And as if that was not enough...<br />It is a constant reminder...<br />Of what I wanted to do...<br />But could not do...<br />To honour Ella yet...<br /><br />A long list await...<br />But life gets in the way...<br /><br />Life for now equates with work...<br />The place where although I know it helps...<br />I can't focus on my daughter as much as I'd like...<br /><br />The place where I started having panick attacks again...<br />The place where I find myself in tears, more and more daily...<br />Not because someone is mean...<br />Not because of the work load...<br />But simply because the countdown is on...<br /><br />The place, like the rest of the world, where everyone has a life...<br />A real life..<br />Although maybe not always happy...<br />A life without the black cloud...<br /><br />A place that I must be at...<br />Because otherwise I won't be able...<br />To keep my home, Ella's home...<br /><br />Rare Disease Day went un-noticed...<br />The Olympics celebrations nearly had the best of me...<br />Not because I was out partying and enjoying it...<br />But rather because I cannot celebrate life...<br />The way that it would have been celebrated...<br />If Ella was with me physically still...<br /><br />The countdown has begun...<br />And I can't do anything about it...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2257180349915124850?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-57263751433260557982010-02-25T22:41:00.000-08:002010-02-25T22:47:11.265-08:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/S4duM-BI-iI/AAAAAAAAAEQ/CZKxEH_PpcQ/s1600-h/y1p6trmZlTCPPiIeS6w7ZNxkzjLLDJSqOHJkfgSMJJ1pmDX4gjInUIJUoX6T9lj-2KE3k3zMGVjaKivSguoBd0bYA.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 244px; height: 217px;" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/S4duM-BI-iI/AAAAAAAAAEQ/CZKxEH_PpcQ/s320/y1p6trmZlTCPPiIeS6w7ZNxkzjLLDJSqOHJkfgSMJJ1pmDX4gjInUIJUoX6T9lj-2KE3k3zMGVjaKivSguoBd0bYA.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5442439843785800226" /></a><br /><a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4duMUKtfSI/AAAAAAAAAEI/W7dgWzNEIms/s1600-h/DSCF2142.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4duMUKtfSI/AAAAAAAAAEI/W7dgWzNEIms/s320/DSCF2142.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5442439832551652642" /></a><br /><br /><br />Some of you might have heard...<br />Or maybe even read...<br />That my little girl...<br />My vivacious, precious, little darling...<br />Will be in Northern Ireland...<br />In Belfast, more specifically...<br /><br />You see...<br />On February 26...<br />Belfast celebrates...<br />Rare Disease Day...<br /><br />Yes, I know...<br />Rare Disease Day...<br />Is really on February 28th...<br /><br />But who celebrates at City Hall?...<br />On a Sunday of all days?...<br /><br />So, all the way overseas...<br />Ella's story...<br />Will part of a day...<br />This Friday at noon...<br /><br />To bring awareness...<br />And seek better screening...<br />For rare diseases...<br /><br />But how can this be?...<br />I hear you ask...<br /><br />Very simple...<br />Is my answer...<br /><br />When your family...<br />Becomes part of the brotherhood...<br />And sisterhood...<br />Of rare diseases...<br /><br />We all become related...<br />We are all friends...<br /><br />And so for Ella...<br />This wonderful honour...<br />Came in the form of a request...<br /><br />From a grand-dad...<br />Fighting to save...<br />His sweet grand-son... <br /><br />A very brave young boy...<br />Cavan...<br /><br />Afflicted by XLP and EVB/HLH...<br />Diseases with absolutely no other relation...<br />To Ella's own disease...<br />Than the fact that they are also...<br />Genetic...<br /><br />Cavan fights...<br /><br />As Ella always did...<br /><br />Just like Ella's disease...<br />Cavan's is also rare...<br />So rare, in fact...<br />That only 1 in 100 families...<br />Have had such a diagnosis...<br /><br />So on February 26...<br />Ella's spirit...<br />Will soar high...<br />And wide...<br />Over Belfast...<br /><br />Shedding light...<br />And awareness...<br />On statitics...<br />She fell victim to...<br /><br />An overwhelming...<br />75% of rare diseases...<br />Affect children...<br /><br />And of those...<br />30%...<br />Will not live...<br />Beyond 5 years of age...<br /><br />Almost all rare diseases...<br />Are incurable and...<br />More often than not...<br />Without effective treatment...<br /><br />On February 26...<br />Ella will look after...<br />Cavan and his family...<br /><br />Maybe even play a few tricks...<br />As she so loves...<br />To do to me... :)<br /><br />All because...<br />Cavan's grand-dad...<br />Promised to celebrate...<br />The strongests of strongests...<br /><br />Currently living...<br />With rare diseases...<br /><br />And the bravests of bravests...<br />Who like Ella....<br />Could not beat the odds...<br /><br />Cavan...<br />Ella & I send you...<br />Butterfly kisses...<br />And ladybugs hugs...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-5726375143326055798?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-77086893026410403742010-02-23T22:29:00.000-08:002010-02-23T22:42:15.364-08:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4TIW3uelFI/AAAAAAAAADQ/wR3dcw85mWY/s1600-h/IMG00044.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 256px;" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4TIW3uelFI/AAAAAAAAADQ/wR3dcw85mWY/s320/IMG00044.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5441694545011971154" /></a><br /><br />Since I learned of the diagnosis last October...<br />My mind has been in overdrive...<br />Overdrive to the 100th power actually...<br /><br />It already had been in my ongoing research...<br />Since that one disease had been mentioned...<br />When Ella was hospitalized for the second time...<br />A year prior...<br /><br />And so I went on...<br />Reading every paper I could find...<br />Every abstract...<br /><br />Posting testimonials on web sites...<br />Researching late at night...<br />Sometimes all day...<br />Contacting rare organizations around the world...<br /><br />But none of those efforts for answers...<br />Really brought me comfort...<br />On the other hand, they generally... <br />Got me even more frustrated...<br /><br />That medicine...<br />As amazing as it is...<br />Has so many limitations...<br /><br />When it comes to the identifying...<br />Managing...<br />And curing rare diseases...<br /><br />So I took matters in my own hands...<br /><br />Yes, I know...<br />I have control issues...<br /><br />But sometimes, these types of unhealthy behaviours...<br />Actually are needed to move forward...<br /><br />And then, it happened...<br />Out of blue...<br />I found a post...<br />From a mom speaking about her son living with PVNH...<br /><br />In a moment of clarity...<br />I thought maybe?...<br />Maybe I can find her...<br /><br />And I did...<br /><br />I sent her a quick note...<br />Told her Ella's story...<br />And asked her if she would...<br />Share her own experience...<br /><br />She immediately sent back an email...<br />To say sorry for my loss, and thank you... <br />To offer her family's story...<br />With regards to PVNH...<br /><br />From the other side of the world...<br />And, as if offered as a gift from Heaven...<br />Came the news that she knew...<br />Several other PVNH families too...<br /><br />And then I thought...<br />If I can't control the lack of information out there...<br />I can definitely impact what the useful information can be...<br />When it comes to PVNH...<br /><br />Out of my personal dysfunction... <br />Came a Facebook group...<br />X-Linked Periventricular Heterotopia (PVNH)...<br /><br />A group?...<br />Not really, it was just me & Ella...<br />Or so I thought...<br /><br />But quickly there was one...<br />And then two...<br /><br />By Christmas...<br />As many as 9 families had joined...<br />Because they knew...<br />As I did... <br />That Ella & I were not alone...<br />And that we would never be again...<br /><br />In the next few days...<br />I will introduce to you...<br />To the other faces of PVNH...<br /><br />The ones that help me keep my chin up...<br />And my faith unwaivered...<br /><br />That one day...<br />One day, we will know...<br /><br />How to better diagnose...<br />Manage the symptoms...<br />And hopefully cure PVNH...<br /><br />ELLA - Everynone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-7708689302641040374?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-12210867751963636812010-02-22T21:50:00.000-08:002010-02-23T22:26:58.407-08:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4OHfnvQeMI/AAAAAAAAACw/tm9FYchJfPc/s1600-h/DSC00226.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S4OHfnvQeMI/AAAAAAAAACw/tm9FYchJfPc/s320/DSC00226.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5441341752106580162" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />So, now we know, It's called PVNH...<br />But really, what does that mean?<br /><br />First, a name...<br />Periventricular Nodular Heterotopia...<br /><br />Then, a lesson in medicine...<br />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...<br /><br />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)....<br /><br />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...<br /><br />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....<br /><br />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...<br /><br />This, as far as they know, has never been documented to date...<br /><br />But I told you Ella was a zebra... And zebras are no horses... <br /><br />So in true Ella fashion... Ella's symptoms did not really reflect the typical symptoms expected with this disease...<br /><br />No delay... No seizures... No hyperflexible joints...<br /><br />But there was a cardiac defect, something which helps put weigth on the PVNH diagnosis... And then, the neuronal migration defect was there too... <br /><br />But the biggest symptom Ella had...<br />Cannot be explained clearly and definitely by PVNH...<br /><br />To this day, it is impossible to confirm...<br />That Ella's PVNH caused her end-stage emphysema on both lungs...<br /><br />And that, is the reality of rare diseases...<br /><br />While I am blessed to have a diagnosis...<br />A luxury many families affected by rare diseases are not granted...<br />I continue to search for answers....<br /><br />Answers on what happened to Ella...<br />Answers on what it means for my family... <br />The one Ella and I have...<br />And the one I am wishing to grow in her memory...<br /><br />ELLA - Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1221086775196363681?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-849699196967616372010-02-21T21:19:00.001-08:002010-02-21T22:59:43.812-08:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/S4ImGP9scvI/AAAAAAAAACo/Z4bY4eTm_c0/s1600-h/1.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5440953188623348466" border="0" alt="" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/S4ImGP9scvI/AAAAAAAAACo/Z4bY4eTm_c0/s320/1.jpg" /></a><br /><div>Since October 2008, we've known...<br />Known that Ella was a zebra...<br />A little girl like no other...<br />Full of life and bright as the sun...<br /><br />And though we tried our best...<br />We could not...<br />While she was alive...<br />Find out what was causing her illness...<br /><br />And so, Ella lived...<br />On oxygen...<br />In the hospital...<br />For nearly 6 out of her 8 months of life...<br /><br />And what a life!<br /><br />Almost always a perfect smile...<br />Playful and loving...<br />Full of character...<br /><br />Looking so happy...<br />And healthy on the outside...<br />You'd never think...<br />Her little lungs were destroyed...<br /><br />But every once in a while...<br />There was a flash of fear...<br />Usually around the time...<br />She would start to truggle to breathe...<br /><br />And so we learned to read the signs...<br />And manage the symptoms...<br />Of Ella the Zebra...<br />So she could live her life...<br />For as long as she could...<br /><br />And though Ella lost the battle...<br />Her fight did not end...<br />On the contrary...<br />It is now stronger...<br />Stronger than ever...<br />Carried by her so large spririt...<br /><br />It took a year...<br />To get to the elusive diagnosis...<br />But the one question remains...<br />Is this the only one...<br />The diagnosis that caused it all..<br /><br />An with that...<br />the work is laid out...<br />For us, Ella's army...<br />To change the face...<br />Of rare diseases...<br />Starting with...<br />The one answer we have...<br />Called PVNH...<br /><br />Ella - Everyone Loves Littles Angels</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-84969919696761637?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-16872958168001382772010-01-14T21:24:00.000-08:002010-01-17T16:29:09.974-08:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/S1AFUBfF_II/AAAAAAAAACY/6jEB-9ab6C8/s1600-h/DSCF2311.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5426843392535821442" border="0" alt="" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/S1AFUBfF_II/AAAAAAAAACY/6jEB-9ab6C8/s320/DSCF2311.JPG" /></a> It's been more than 7 weeks...<br />7 weeks and 4 days to be exact... <div>7 weeks and 4 days since I sat here...</div><div>And last journaled our journeys - mine and Ella's...</div><br /><div>It was November 23, and I recounted...</div><div>The day we left BCCH after our 2nd stay...</div><div>The day in 2008 when our hope was big and grand...</div><div>As we prepared to take our baby home again... </div><br /><div></div><div>That was 7 weeks and 4 days ago...</div><div>And so much has happened since...<br /></div><div>7 weeks and 4 days of being back at work...</div><div>Even if more than half of that was only part-time...</div><div> </div><div>A first Christmas... without Ella...</div><div>A first New Year... without Ella...</div><div>A brand new decade... without Ella...</div><div> </div><div>A visit to Montreal...</div><div>My first since we took Ella...<br />To meet her families in October '08....</div><br /><div>An emotional flight in, it was...</div><div>An entertaining flight back I had...</div><div>And quite a fun surprise for my familly I offered in between...</div><br /><div>And such a blessing Ella gave me...</div><div>By showing me I needed to be with my family...</div><div>At this part of our journeys...</div><br /><div>And then there is...</div><div>A larger bereavement group...</div><div>ELLA's bereavement group...<br /></div><div> </div><div>A fact I find so sad because I know...</div><div>I know the pain...</div><div>The pain that each parent of angels feels...</div><div>As they start down this dark journey...</div><div>They did not choose to be on...</div><br /><div>And yet, it make me grateful...</div><div>That through Ella's journey...</div><div>Parents come together...</div><div>To support each other...</div><br /><div>Then there is...<br />Another grouping of parents...</div><div>The X-linked PVNH group...</div><div>That Ella also brought together...</div><br /><div>A group of parents so strong...</div><div>For their families are affected...</div><div>By that same rare disease...</div><div>That took Ella from us...<br /></div><div> </div><div>They chose to gather...</div><div>In one spot together...</div><div>To lend support...</div><div>And seek help...</div><br /><div>And through it all...</div><div>I am learning...</div><div>Learning to take care of myself...</div><div>That I come first...</div><br /><div>Back to yoga...</div><div>Added acunpunture...</div><div>And did I mention my Christmas Tree...</div><div>And Ella's Tree...</div><div>Are both still up...</div><div>Shining their brights lights...</div><div>Every night when I get home...</div><br /><div>As I reflect on my last 7 weeks and 4 days...</div><div>And as I am told by my friends who've been by my side all along...</div><div>I know I am making progress...</div><br /><div></div><div>At my pace...</div><div>On my terms...</div><div>As little...</div><div>Or as much...<br />As I can handle...</div><br /><div>Honouring my daughter...</div><div>Thinking of new ways...</div><div>To pay it forward...</div><div>And living my life on purpose...</div><div>For as long as I live... </div><div><br /></div><div></div><div>ELLA - Everyone Loves Little Angels</div><br /><br /><div></div><br /><br /><div></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1687295816800138277?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-29179406320099102412009-12-24T20:04:00.000-08:002010-01-17T11:23:08.970-08:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/S1AJYgpognI/AAAAAAAAACg/PNa5ZNAJ7s8/s1600-h/DSCF2228.JPG"></a><br /><div>Holiday Wishes...</div><div>And snow Angels...</div><table border="0" cellspacing="0" cellpadding="0" bgcolor="#ffffff"><tbody><tr><td><a href="http://smilebox.com/play/4d5451304d4449334d54593d0d0a&amp;blogview=true&amp;campaign=blog_playback_link" target="_blank"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Click to play this Smilebox slideshow: Wishes &amp; Snow Angels" src="http://smilebox.com/snap/4d5451304d4449334d54593d0d0a.jpg" width="386" height="303" /></a></td></tr><tr><td><a href="http://www.smilebox.com/?partner=hallmark&amp;campaign=blog_snapshot" target="_blank"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Create your own slideshow - Powered by Smilebox" src="http://www.smilebox.com/globalImages/blogInstructions/blogLogoSmileboxSmall.gif" width="386" height="46" /></a></td></tr><tr><td align="middle"><a href="http://www.smilebox.com/slideshows/?partner=hallmark" target="_blank">Make a Smilebox slideshow</a></td></tr></tbody></table><br /><br /><div>That was the message I shared...</div><div>With my family...</div><div>My friends...</div><div></div><div>With Ella's nurses...</div><div>And her doctors...</div><br /><div>With my Facebook groups...</div><div>And all of my Facebook friends...<br /></div><div></div><div>With people I met...</div><div>On this journey we've been on...</div><br /><div></div><div>With all of you of have been...</div><div>There for me... </div><div>Day in... and out...</div>To cheer me onto a new day...<br /><br /><div></div><div>This was my Holiday Wish...</div><div>This is my new Year' goal...</div><div>And it's comprised...</div><div>Of all the lessons that Ella taught me... <div></div></div><div>Maman t'aime si fort mon coeur!<br /></div><br /><div>ELLA - Everyone Loves Little Angels</div><br /><br /><div></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2917940632009910241?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com1tag:blogger.com,1999:blog-3164620254772572701.post-85075263499177273472009-11-23T21:43:00.000-08:002009-11-24T09:56:04.353-08:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/Swt_NUAiGzI/AAAAAAAAACQ/gHKP1SJWG7E/s1600/IMG_0380.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 213px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5407555644274383666" border="0" alt="" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/Swt_NUAiGzI/AAAAAAAAACQ/gHKP1SJWG7E/s320/IMG_0380.JPG" /></a><br /><div>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...</div><br /><div>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...</div><br /><div>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...</div><br /><div>But beyond the love and support I received from my family is the other kind love and support I felt...</div><br /><div>The love and support that comes from friends who without any expections in return sent my and Ella's way...</div><br /><div>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...</div><br /><div>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...</div><div><br /></div><div></div><div></div><div>Since I decided I would attempt a return to work, there were more words of encouragements, emails, cheers and calls...</div><div></div><div>And as I headed to work today, more messages, cheers, calls, even flowers - pink of course and embraces came my way... </div><br /><div>Since I came back from my first day's work tonight, there's been so much more love and support...</div><br /><div>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...</div><br /><div>I am grateful... Just plain grateful... for your love and your support!</div><br /><div>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!"</div><br /><div>ELLA - Everyone Loves Little Angels</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-8507526349917727347?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-34959483801308993382009-11-20T22:44:00.000-08:002009-11-21T00:04:10.219-08:00<a href="http://3.bp.blogspot.com/_g1qWY5Uuho0/Swed1cOU1dI/AAAAAAAAACI/LC22CQ1OUlE/s1600/IMG_0459.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 213px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5406463419116475858" border="0" alt="" src="http://3.bp.blogspot.com/_g1qWY5Uuho0/Swed1cOU1dI/AAAAAAAAACI/LC22CQ1OUlE/s320/IMG_0459.JPG" /></a><br /><div>On November 16, 2009 I should have been celebrating the beginning of my 5th year in Vancouver...</div><br /><div>On November 16, 2009 I should have been able to tuck my daughter in, sing her gently to sleep and tell her how much I love her...</div><br /><div></div><div>On November 16, 2009 I should have been able to hear my daughter say "Je t'aime" as she trailed into dreamland...</div><br /><div></div><div>Instead, on November 16, 2009 I was faced with the gross realization that it had been 7 months and 20 days since my daughter passed away in my arms... </div><br /><div></div><div>And that the next day, she'll have been an angel longer than she's been alive by my side...</div><br /><div></div><div>What a way to start a week, ugh? </div><br /><div></div><div>But as I reflect on that day and those thoughts more specifically, I know that as this 5th year in Vancouver starts there is a wind of change that lifts me up. A wind that is powered by two very small lungs... Two very healthy lungs that belong to one hell of an angel... Angel Ella, my baby girl!</div><div></div><br /><div>She is the force that makes me get up and breathe... </div><br /><div></div><div>She is the strength that allows me to feel, feel with every ounce of my body... something I was probably unable to do very well before she came into my life.... </div><br /><div></div><div>She heightens my sense of smell... She is the spring in my step... and the song in my heart... The pupil of my eyes...</div><div></div><br /><div>She brings me to tears and always follows through with a smile or a good giggle...</div><br /><div>Without Ella, I might have gone on to live my life as uneventfully as I did before... </div><br /><div>Without Ella, I might have not paid it forward as much...</div><br /><div></div><div>Without Ella, I might not have really known what it was like to live and to really love....</div><div><br />And as I go about my day, there is not one moment that she is not on my mind..</div><div></div><br /><div>I can still sense Ella's touch on my cheeks as she reaches for my hair... </div><br /><div></div><div>I can still smell her baby smell... </div><br /><div></div><div>I can still see every roll of her body as she dances playfully... </div><br /><div></div><div>I can still feel the slight tug of my hair as she twists it over and over around her little finger... </div><br /><div></div><div>And who could forget about "le doigt d'honneur" - that middle finger that would pop up on one hand as the other would give you a piece sign... F you and peace all at once - what a diplomat she was :)</div><br /><div></div><div>I so wish I could have it all back, just for one more minute... to hold her... to sing to her... to kiss her... to tell her I love her...</div><br /><div></div><div>That won't be possible until I meet her in afterlife, I know... And so I've decided that I would continue to do what I've been doing in the last nearly eight months and which has been working quite well so far: live knowing that Ella is always with me...</div><br /><div></div><div>I know... you probably think I've lost my marbles... But why not?</div><br /><div></div><div>Ella got me back on a horse after 4 years away... Afterall, that was supposed to be "our" thing.</div><br /><div></div><div>Ella got me to start yoga... Okay, that one is not as much her as what happened to her. I just needed to something to help ground me. But I know she gets me through it!</div><br /><div></div><div>Ella showed me pink glittery gum boots I had to buy last week, a couple of days after I went looking for puddles to play in (and did play in) because if Ella had been alive, that's what we would do together...</div><br /><div></div><div>As Ella would have been 16 months in 2 weeks, we would be at the stage of doing crafts together and now thanks to her, I have a desire to be more creative - something from deep inside me that I am rediscovering... All in her memory but also because if Ella was with me, that's what we would do...</div><br /><div></div><div>But in her passing, Ella gave me a beautiful gift... The gift of our lives together and our story... and though it is indeed a tragic story, it is a story to which I would make no changes except to bring her back...</div><br /><div></div><div>Today, I was able to share that story with a room full of colleagues as I prepare to return to work on Monday... Some I know very well and some I'd never met... And just like it has been the case since Ella's passing, she continues to touch people... Or is it that we, together as mother and daughter, touch people...</div><br /><div>Someone told me yesterday that Ella and I have a very special gift to share....</div><br /><div>Someone told me last month that at 35 his life is not nearly as full and fulfilling as Ella's life has been and that he is inspired by her and how she continues to motivate people to be better individuals...</div><br /><div>As I embark on new adventures, Ella will be with me just as she was today when I faced my fears head on. It will not be an easy road... It will not be a steady road... But with a rock-solid little girl like Ella with me, there is absolutely no way I can get lost...</div><div></div><br /><div>ELLA - Everyone Loves Little Angels</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3495948380130899338?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-83913453816838316612009-11-18T23:50:00.000-08:002009-11-20T22:42:56.021-08:00On 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…<br /><br />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...<br /><br />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...<br /><br />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!).<br /><br />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...<br /><br />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...<br /><br />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....<br /><br />Why fear and desperation? Because I was alone... Well, not really... but yeah, so I thought... in the moment…<br /><br />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...<br /><br />But back to the fear and desperation...<br /><br />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 …<br /><br />But I tried my best not to lose it…<br /><br />By the time the service started, tears were rolling off my cheeks like a cascade…<br />And as Eric, chaplain of Canuck Place, spoke I was already a complete mush…<br /><br />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…<br /><br />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...<br /><br />There are 3 moments in the service that stand in my mind…<br /><br />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…<br /><br />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…<br /><br />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…<br /><br />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…<br /><br />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…<br /><br />And that’s when Ella first interfered!<br /><br />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…<br /><br />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…<br /><br />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!<br /><br />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…<br /><br />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…<br /><br />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…<br /><br />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…<br /><br />After a very thorough tour around the Canuck Place gardens, my heart started to sink… I had not found Ella’s lantern…<br /><br />So, we made our way to the volunteer who knew where each lantern was placed and asked where Ella’s was…<br /><br />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…<br /><br />A twist I attribute to my mischievous angel… J<br /><br />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!!!<br /><br />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!<br /><br />And then Linda and I both headed home, all the while still laughing and amazed by the turn of events that night…<br /><br />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…<br /><br />ELLA – Everyone Loves Little Angels<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-8391345381683831661?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com1tag:blogger.com,1999:blog-3164620254772572701.post-20093628031424130392009-11-17T21:45:00.000-08:002009-11-18T11:11:02.102-08:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/SwOoW_0lZQI/AAAAAAAAACA/DV-Q32SuJ1Y/s1600/IMG_0361.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 213px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5405349090817303810" border="0" alt="" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/SwOoW_0lZQI/AAAAAAAAACA/DV-Q32SuJ1Y/s320/IMG_0361.JPG" /></a><br /><div>7 months and 20 days....<br />Not what you’d normally call…<br />A life time...<br />But it is…<br />It is…<br />Ella's life time...<br /><br />7 months and 20 days...<br />2 months of which were "healthy"...<br />And well, the rest you now figure out...<br /><br />And yet, Ella was "healthy"!<br />As healthy as you can be…<br />When your lungs are poisoning you...Definitely so ill inside...<br />But remarkably so healthy-looking outside...<br />And in her mind…<br /><br />Although Ella had end-stage emphysema…<br />Before she was even 3 months old...<br />You could definitely not tell...<br /><br />Ella has a sparkle in her eye…<br />Ella has a grin on her face…<br />Ella has an intent way of looking right through you…<br />And captures your heart…<br /><br />Feet up…<br />Hands waiving…<br />Ella dances to the music that plays around her…<br />And to the songs that drum in her head…<br /><br />With King Louie…<br />With Pinky…<br />With Mula Visa…<br />Grand-Maman…<br />And Grandma…<br />With Maman..,<br />And Daddy…<br />Always with Ralph looking out for her…<br /><br />Mischievously playful…<br />Peacefully restful…<br />From frail to plump…<br />Holding on to Daddy’s finger…<br />Smiling for Maman…<br />Ella grew…<br /><br />And as Ella grew…<br />Her lungs got worse…<br />But you could hardly tell…<br /><br />From the day she was born…<br />To the day she died…<br />Ella lived a full life…<br />The way Ella intended to…<br /><br />Announcing herself as a surprise…<br />Keeping me on my toes and off my feet…<br />Peeking her head ahead of time…<br />Taking Maman for a ride…<br />Ella lived…<br /><br />Ella went to a pub 18 years before it was even legal for her to do so...<br />Ella was on Facebook when kids 10 years her senior are not allowed...<br />Ella travelled across the country to meet her families…<br />Ella went to work… (Maman’s workplace that it…)<br /><br />Ella was a die-hard football fan (go 49ers, go Dolphins!)…<br />Ella was a Canucks lover…<br />And Ella roared fiercely for the Lions…<br /><br />Ella attended an LGBT travel show…<br />Where she was the star…<br />With the Dallas Cowboys (the shirtless kind!)…<br /><br />Ella was a supermodel in Montreal…<br />Posing for an indoor photo shoot complete with lighting, talent and 3 photographers…<br /><br />Ella was a supermodel in Vancouver…<br />Subjected to her mom’s kid Kodak reflexes…<br />And immortalized by friends, nurses and Jane from Now I Lay Me Down to Sleep…<br /><br />Ella went to the beach…<br />And Ella ate out at restaurants…<br />Ella was touched by the rain…<br />And thanks to Michele, one of her nurses, also by snow…<br /><br />Ella went to birthday parties…<br />And collected stuffies…<br />Ella loved watching Stewie…<br /><br />Ella breastfed…<br />And she held her own bottle…<br />Ella grinned as she lay on her sleeping Daddy’s stomach…<br />And Ella played rhymes with her Grand-Maman…<br /><br />Ella had a first love, beside her dad: nurse Ryan…<br />And Ella had a beau (sweet Gavin)…<br />A best girl, Emma, who visited her so often…<br />And Ella learned to count…<br /><br />Ella celebrated Halloween…<br />And Thanksgiving…<br />Christmas… and New Year…<br />Hawaiian Day…<br />And Daddy’s birthday…<br />But was sadly two days short of wishing Maman Happy Birthday…</div><div>Although she’d learned to say "Maman" – a precious gift that came as she was about to leave.<br /><br />Ella was baptized…<br />And Ella was proclaimed a Saint…<br />By the father who presided at her funerals…<br /><br />Ella felt the wind…<br />And the love of a thousand friends…<br />From far and wide…<br />Who 7 months and 20 days ago…<br />Had their hearts ripped out…<br />When Ella became an Angel…<br /><br />And as I started the day… </div><div>The 7 month and 21st day....<br />The day when my daughter has been an angel longer than she’d been by my side…<br />I remembered the words of a very wise nurse…<br />Who believes like I do…<br />That we are all put here for a reason…<br />And that we all follow our own path…</div><div><br />Ella was and is beautiful…</div><div>As she continues to inspire me…<br />My family…<br />My friends…<br />No matter how long our journeys are…<br /><br />7 months and 20 days is a life time…<br />7 months and 20 days is Ella’s life time…<br />As long as I live and honour her…<br />Ella’s life time will go on…<br /><br />ELLA - Everyone Loves Little Angels<br /><br /></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2009362803142413039?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-21975621147996204492009-11-01T21:41:00.000-08:002009-11-01T23:14:59.271-08:00<a href="http://3.bp.blogspot.com/_g1qWY5Uuho0/Su6GN3XjdMI/AAAAAAAAAB4/Z2p97kBHCTo/s1600-h/DSC00220.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5399400576022967490" border="0" alt="" src="http://3.bp.blogspot.com/_g1qWY5Uuho0/Su6GN3XjdMI/AAAAAAAAAB4/Z2p97kBHCTo/s320/DSC00220.JPG" /></a> I started my day today feeling a bit lazy. Last night was Halloween, and instead of being with my almost 15-month-to-be daughter, I spent the evening with friends. Really good friends. Friends who are good for your soul. But not really by choice (and please don't think I was unhappy to be there, because I wasn't) but rather because it was a necessity. A way for me to cope with the reality of it all... The reality of my daughter's passing and how any kind of special day/holiday sends me for a spin...<br /><br /><div>Unlike yesterday, my day today started with a huge ray of sunshine in my heart. Yesterday, well, that was another story... In other words, a very tough one...<br /></div><div></div><div>Even though we were blessed with an absolute beautiful, warm and sunny autumn day - the kind of day that makes you long for the East - my heart was not in it and I had to force myself to go through the motion and get through it.</div><br /><div></div><div>I've become an expert by now at faking it. Faking a celebration... Faking a smile... Faking to look remotely "normal" and happy. And then, I decided to blog about Ella. I recapped a text I wrote for Ella's Supercommunity for BCCH - about Ella's first crush, Ryan. And as I copied and pasted the old text, I decided to re-read it and make minor corrections to it. And then, well I added more meat to it, turning it into a thank you to nursing staff who took such wonderful care of my little Ella. </div><br /><div></div><div>And that's when the shadows in my heart turned into a ray of sunshine. Ella was showing me a way to overturn those feeling of ache and make them positive again. Every single time I've gone down with major cases of the blues, it has been around special days and I've learned to cope by taking care of my BCCH family. Why would this day be any different than the other holidays, really?</div><br /><div></div><div>So I went shopping and then I started to bake! Gutted a pumpkin and made pumpkin soup. And then baked some chocolate pumpkin cupcakes. All throughout the afternoon, I was driven by one goal - bring a little bit of Halloween to the staff at BCCH on 3M where Ella spent her first and only Halloween, and to the parents of kiddies on the ward. And when I was done, I remembered those parents I'd met at Thanksgiving and thought "I still have a pumpkin, and everything left to do more cakes, so I need to continue". And I did :)</div><div> </div><div>By 6 pm, I was walking in to BCCH, bags of goodies in hands. There was cakes for the staff of 3M and ICU, some candies for the 3M staff and soup + cupcakes for the parents of both 3M and ICU. As I laid the tables in each area with food and the appropriate plastic settings, I was fortunate to meet a few parents and talk to the staff, all very grateful for the gesture. And just as quickly as I came in, I was out the door! Not without thoughts for little ones I knew back when Ella was in the hospital: T who was going to be dressed as Elmo (costume made by nursing staff for him), F who hopefully was dressed as a very cute little lady bug (a gift from Ella to her on the day she met her new family). And then there was a special thought for another little one who I did not meet but was wishing so well: a little boy or girl I am not sure, but one who was to receive the Dalmatian outfit I left on 3M earlier this week for a family to enjoy.</div><br /><div></div><div>And so, with that afternoon of "cooking therapy" I was energized for a lovely evening. I made it to the party in time to see the darling little Emma, Ella's best girlfriend, all dressed up in the ladybug outfit I got for her. And although Emma was getting grumpier and grumpier because she was so tired, I got a huge hug and a "Love you" that went straight to my heart! And so started my evening among friends... Friends that are good for your soul... Friends that care for you... Friends that love you for who you are...</div><br /><div></div><div>That feeling of being loved and content carried on to morning. Yes, I was lazy but I could be since we had an extra hour to spare. But noooooo, no late morning for me because the call of horses was being heard!</div><div></div><br /><div>I made my way to the barn to witness the costumed classes of the schooling show I was participating in. It has been 20+ years since I've shown, in a real show or a school one. And I was energized, but terrified... Wearing my pink proudly for Ella (in a school show, you don't need the mandatory outfit), I warmed up and it felt good. And as I got on course, my fear intensified.... I went through the motion of the first course and just like I had done when I was 8, I forgot to breathe... And by the second course, it had all come back to me... How good it feels to be in the saddle again... How sweet it is to have a 1,000 pound animal share in on your partnership... How much I loved showing... How good it is to breathe... And yes, I did and I still do. And I will tomorrow too! </div><br /><div>Today, as I was showing, I had Ella in my heart, in my pocket (her picture), on my neck (the heart pendant we share) and I had Chelsea to help me through it. Chelsea, a wonderful old (she is 27) and safe Arabian mare who despite her very grumpy moods melts your heart when she snuggles you... After snatching a ribbon, a 3rd no less and regardless of a big mistake on part, I decided it was time to say thank you. So I headed to see my girl. And as I sat by her side, under a full sun and told her about the great day I just had, I knew she already knew it, that she'd seen me through it. But I just had to tell her and say thank you. And as I started to sing to her, my voice gave out, and my tears came in. Ella and I were supposed to enjoy horses together. It was supposed to be "our" thing. But when I got in to my car, I realized that it already was. Right there in my car as I sat down was a ladybug on my sleeve. She made her way to my hair (Ella always, always played with my hair when I rocked her) and after I tried to capture a photo of it, I stepped outside,, She just stayed there for a second more before flying into the wind...</div><br /><div>And that my friends are the blessings from high above. The blessings that Ella gives me every second of every minute of every hour of every day...</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2197562114799620449?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-53160016256989196312009-10-31T12:43:00.001-07:002009-11-01T21:41:00.679-08:00<a href="http://3.bp.blogspot.com/_g1qWY5Uuho0/SuyVd8X1sBI/AAAAAAAAABw/86_LLsMWL3g/s1600-h/DSC00232.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5398854394965241874" border="0" alt="" src="http://3.bp.blogspot.com/_g1qWY5Uuho0/SuyVd8X1sBI/AAAAAAAAABw/86_LLsMWL3g/s320/DSC00232.JPG" /></a><br /><div>I originally wrote this text a couple of weeks ago to add in to the series of moments in Ella's life I docu- mented for BCCH Supercommunity ELLA - Everyone Loves Littles Angels. It should have been added yesterday, in place of Ella's First Halloween which I should have written today. Oh well, can't dictate a mother's heart and where the inspiration comes from right? Oh, and I've made slight additions to it too :)</div><br /><div>So here it is.</div><br /><div></div><br /><div>It was October 30, 2008 and Ella had just been re-admitted to BCCH for the second time the day before. By this time, we knew Ella's condition was serious enough that she required oxygen therapy. We were on 3M, in quiet a corner room. And on that day, as I rocked my daughter, we met nurse Ryan. </div><br /><div><br />Ryan was our third male nurse. Chris had been our ongoing nurse extraordinaire when Ella was born at BC Women's. And then on Ella's first hospital stay, we were fortunate to be cared for by Mark on 3R. But as we started this stay at BCCH, I noticed something in my baby girl's eyes when Ryan entered the room.... It was as though Ella had a glimmer in her eyes :)</div><br /><div><br />It did not take long for both Ella's dad and I to understand that the glimmer was actually Ella's way of telling us she had a crush on Ryan. She would become so focused on him as he cared for her, and would be so playful, even more so than with other nurses. And she would just have that happy look every time he was around. We were blessed to have Ryan look after us (I say us because I was staying with Ella 24 hours/7) and Ryan was of such great help to me throughout this difficult time.<br /></div><br /><div>Fast-forward a month and a half and this time, we have been readmitted in to BCCH, and have already been transfered down to the ICU because Ella's state has greatly deteriorated. I am walking back to 3F where Ella had spent two nights to update the staff on Ella's state and I ran into Ryan. Upon hearing of Ella's return, he promised to stop by to see her. And sure enough, at the end of his shift, Ella received her first visitor in the ICU: her nurse Ryan. Although Ella was pretty sedated, I know in my heart she was aware Ryan was there to say hi. </div><br /><div><br />And as we started what would be a very long stay in ICU, I thought my baby girl was so blessed to have a first love, besides Maman and Daddy, that loves her right back!</div><br /><div></div><br /><div>I am thinking of you today Ryan. And of all the wonderful caregivers that spend their life looking after other people's children in hope of making them better. And though sometimes, they can't do that as much as they'd like because life takes over, you always manage to make it easier on us, parents, and our little ones too.</div><br /><div></div><br /><div>Thank you - from Ella, from her dad, from me and from every single parent out there who's had a child spend a scary day/night in a hospital! With all my love and gratitude.</div><br /><div></div><br /><div>ELLA - Everyone Loves Little Angels</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-5316001625698919631?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-44008664938385727922009-10-30T23:16:00.000-07:002009-10-31T00:43:05.169-07:00<a href="http://4.bp.blogspot.com/_g1qWY5Uuho0/SuvoYEKuAFI/AAAAAAAAABo/vSmfRivh0E0/s1600-h/pumpkin+kid.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 240px; FLOAT: right; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5398664078466875474" border="0" alt="" src="http://4.bp.blogspot.com/_g1qWY5Uuho0/SuvoYEKuAFI/AAAAAAAAABo/vSmfRivh0E0/s320/pumpkin+kid.JPG" /></a><br /><div><a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/SuvoXv9dciI/AAAAAAAAABg/T8804Ob2N8Q/s1600-h/DSC00201.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5398664073042555426" border="0" alt="" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/SuvoXv9dciI/AAAAAAAAABg/T8804Ob2N8Q/s320/DSC00201.JPG" /></a><br /><br /><div>On October 31st, 2008 Ella had been back at BCCH for 3 days. That stay started with a series of tests which landed her in the critical care section of the ER. But by Halloween, she was already well settled into her room, a very spacious room actually, on 3M. That's where Ella and I spent a month together, day and night.<br /></div><div></div><div></div><div></div><div></div><div></div><div> </div><div> </div><div>By some stroke of luck, Ella was the only patient in that room that normally could fit two patients. And that was perfect, considering I stayed by her side at all times. A small pull out chair, uncomfortable as can be, was soon replaced by a fold-a-bed. It was not the Ritz by any means but we managed. There was a TV, and we had a rocking chair which was pretty much dedicated to us. Oh, and a private bathroom too :) Luckily, there was also a small kitchen about 30 steps away from her room, equipped with a fridge, micro-wave, toaster and good things like milk, fruits, juices, bread and cookies. </div><br /><div>Ella's dad came by daily. One of us would make the Starbucks run (venti chai latte and venti non-fat latte) and get the paper. Those days were filled with play time, rocking, reading and finger holding. It was also a chance for me to catch up on my sleep (I insisted on feeding Ella myself during the night for a good portion of the month). Sometimes we had dinner together with Ella. And several times a week, I'd get a home cooked meal.<br /></div><div></div><div></div><div></div><div></div><div> </div><div> </div><div>October 31st remains a very important day in my mind. It was the day that Ella had her first "scary" procedure. It would normally be an easy one, but because she was just a baby, she had to be intubated and sedated for that one. Ella was having her first CT scan, in hope of trying to pin point the source of her trouble. We'd been cancelled twice already in the previous day and though I was anxious for it to happen, I was disappointed that it was on Halloween.</div><br /><div>When we had been in Montreal, just days before, my mom had presented Ella with her very first Halloween outfit. I have to admit that on the spot, I was a little bit annoyed at my mom because I was looking forward to picking out an outfit for Halloween for Ella myself. But now, 5 days later and back in Vancouver without my family to support me, I felt blessed by my mom's love and her gift. It would have been impossible for me to shop for an outfit. And the fact that she had made me feel so much happier on a day where there was tremendous stress associated with Ella being intubated and sedated.</div><br /><div>After Ella came back from the scan and was resettled in her room, we got a bit of a surprise. There was rumbling in the hall and giggles were heard... It was the Halloween parade! Patients and staff - all dressed up - were strutting their stuff in the hallway and poking their heads in where ever possible to cheer everyone up.</div><br /><div>And that's when my mom's gift came in really handy. I quickly proceeded to dress up Ella. The costume could not have fit her more pefertly. And it was a zip up, with a little hood. Perfect for a babe that has 02 tubing around her! Hot, definitely, but oh so cute. The cutest and sweetest pumpkin of them all!</div><br /><div>Soon, we had nurses and other staff knocking at our door. And then, people we did not know, people who had heard of the cutest, sweetest pumpkin and wanted to say hi :)</div><br /><div>As I visited 3M yesterday with Linda, chaplain at BCCH, I felt a twinge in my heart and tears in my eyes. We stopped by the nurses' station to drop off a Halloween outfit. A little dalmatian outfit for a baby on 3M. An outfit that is perfect for a baby that has tubing and that can't be too dressed up. A dalmation cape, with mits and booties. A simple gift from Ella to parents who are unable to get an outfit for their first baby's Halloween... A gift that equates what my mom did for me last year...</div><br /><div>And as I entered the ward, it all came back to me. The month we spent on 3M. The many nurses who were taking care not only of Ella, but of me. The fun times we had with Ella as a family but also withour friends who came to check in on us. And as I walked by her old room, I was floored... It had been a very long time since I'd been on the ward. And though I remembered exactly where her room was, I could not remember its number. There, in true Ella form, was her old room, room #27 (if you've seen my previous blog, you'll remember that Ella's all about number 7, always). I left the hospital with a smiling heart, thinking that whenever I feel down for whatever reason, Ella picks me right up!</div><br /><div>And today, as I presented Ella with her new Halloween outfit (a set of pink angel wings, a tiera and a magic wand), I thanked my baby girl for giving me will, the love and the energy to pay it forward. </div><br /><div>ELLA - Everyone Loves Little Angels</div></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-4400866493838572792?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-10473263246457996762009-10-28T09:08:00.000-07:002009-10-28T12:11:00.299-07:00<a href="http://1.bp.blogspot.com/_g1qWY5Uuho0/Suh9Z7uTNXI/AAAAAAAAABY/10ORsVUGGiA/s1600-h/2008-11-19+19-40-49.png"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 241px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397702037885629810" border="0" alt="" src="http://1.bp.blogspot.com/_g1qWY5Uuho0/Suh9Z7uTNXI/AAAAAAAAABY/10ORsVUGGiA/s320/2008-11-19+19-40-49.png" /></a><br /><div>Today, a year ago, Ella was admitted to BCCH for the second time...</div><br /><div>Today, a year ago, my beautiful little girl, whom I always felt was very sick, had to undergo more tests than most people will ever do in their lifetime...</div><br /><div>Today, a year ago, Ella's day started as it always had, happy and safe - except I had to hold off on feeding her because she was to do a baryum test, otherwise known as a swallowing study. It was the first of many appointments set up for us by our pediatrician who had told us 5 days earlier that we needed to cut our trip short because they had found something abnormal on Ella's lungs.... And true to form, my baby girl did amazingly well. She gobbled every ounce of that mix she was fed that allowed the docs, and us, to see how she swallowed without skipping a beat!</div><br /><div>Then, after about a 45 minute wait, we made our way to test #2. This one, I was terrified about! This one could have very serious implications. We were going in for a sweat test - the test for CF - cistic fibrosis... For this one, Ella's arm was "painted" with a mixture and then wrapped in saran wrap. And then, Ella was bundled. Bundled like she was in the middle of the Artic! (We'd been asked to bring the warmest clothing we had for her, and blankets too). This bundling ensures that kids sweat, and then this sweat is analyzed over what I considered to be an excruciatating two weeks... Blood is also drawn on that morning and my poor little Ella could not even emit a sound by then. She just had lost her ability to vocalize her cry (the condition with her lungs had paralyzed a vocal chord, something we found out about later that day).</div><br /><div>By then, it was nearly 2pm and we made our way to the lung clinic, to see the lung specialist. At the registration desk, we were told he'd be unable to see us and that his colleague would take care of us. That's when we met one of the doctors who would be instrumental in trying to save Ella. That's when we met Mark.</div><br /><div>He took Ella's history very diligently and answered the thousand questions I was throwing at him along the way. After examining Ella, we made our way to the lab to test her 02 level. And that's when I really got a feeling that everything was far from fine...</div><br /><div>Ella was hooked up to an oxymetry reader and as I held her, I saw Mark's face as he read the result. He then unhooked, rehooked and pressed start on the reader. And his face still had this puzzled look as he read the result. He asked the lab technician for another reader and tried as best as he could not to let on to anything wrong. And even before we tried the second reader, I knew. I knew.... Ella's readings were in the low 80s... She should have been in the high 90s... What I did not know at the time was that at 80, we should have seen a change in colour in her skin. There was none of that. And then, all hell broke loose... Mark got his fellow lung specialists involved, and within minutes, Ella was transfered to the ER's critical care area... </div><br /><div>And then, it just got worse... A team of what felt like 50 people (but was in fact about 15) surrounded us. Nurses took the history while others prepped Ella. Doctors rushed in and out to assess her. And I tried not to lose it. An IV (intraveinous) team member was trying to put a line in to Ella's fragile arm and kept missing... I was bombarded by questions about what was happening with Ella's symptoms: what, since when, allergies, pregnancy recap, family history....</div><br /><div>That day in the ER a year ago is so clear in my mind and yet so blurry all at once. I missed part of it because Ella's dad and I were separated by all the action - not sure if this was intentional or not on the hospital part. All I remember is lots of poking, lots of blood being drawn, urine and stool samples being taken, a scope going down my baby's girl throat, a confirmation that there was indeed a paralized vocal cord. And a lot of unanswered questions about what the hell was going on...</div><br /><div>Today, a year ago, my knees buckled and my world crumbled... And yet I remained hopeful. Hopeful that my baby girl would be okay.</div><br /><div></div><div>Today, a year ago, my life changed forever. And as tragic as this year has been, it has brought me incredible joy and shown unconditional love.</div><br /><div>Today, a year ago, I never would have dreamt that I'd be where I am today: a bereaved mother still recovering from losing my only child - the love of my life. </div><br /><div>As today started, I was reminded of all those emotions, the uncertainty, the unanswered questions. And I know now more than ever that as certain as tomorrow will come, there are no guarantees, no absolute answers and no way to predict the future. You just have to trust your heart, and move forward...</div><br /><br />ELLA - Everyone Loves Little Angels<br /><div></div><br /><div></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1047326324645799676?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-6070574793830478752009-10-27T23:15:00.000-07:002009-10-27T23:30:39.558-07:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/Sufkmlr6W9I/AAAAAAAAAA4/pCCF6qPdu7U/s1600-h/DSC00224.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 274px; FLOAT: left; HEIGHT: 222px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397534030029282258" border="0" alt="" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/Sufkmlr6W9I/AAAAAAAAAA4/pCCF6qPdu7U/s320/DSC00224.JPG" /></a><br /><div>From the day I found out I was pregnant, I was ecstatic. Scared, granted, but ecstatic. I’d been wishing all my adult life this day would come. That one day, I’d start a family.<br /><br />So when the complications started in January ’08, a month after I found out I was pregger, I became worried but kept it to myself. I saw my doctor and was referred to a high-risk obgyn because of the nature of the complications, my age and my few health issues which thankfully were all under control. Not even Ella’s dad knew what was going on as he was away assisting family members who were going through their own health tribulations.<br /><br />In the second trimester, things settled and I was able to announce the big news to family, my friends and I returned to work after a few weeks’ absence. I was feeling better but there was still a lingering doubt in mind that all was okay with the baby. And then, in May, I found out that Ella was not growing properly. She was IUGR (intra-uterine growth restricted) – a fancy term to say that she was way below the curve. Moving steadily upward, ever so slowly, but way, way below the curve.<br /><br />And so, the worries came back flying. By that time, I knew I was going to have a girl, and that was part of my stress. I was never a girlie girl, and thought “what am I going to do with a girl? I’ll break her!”<br /><br />Ella, though born by all appearances healthy, had a very serious condition brought about by a gene deletion that made her little lungs pretty much at end-stage emphysema by the time she was 3 months old. And in the words of the pathologist who examined her remains to try to give us answers, Ella was a miracle as she did not have enough healthy lungs to sustain a 3kg newborn...<br /><br />Well, my “I’ll show you how it’s done little girl”, my zebra as she was known to her medical team, my amazing little fighter did show us how it was done. She made it to 7kgs… 7 big kilos!! And while she was confined to a hospital bed for the better part of her life, Ella was strong and healthy - as healthy as you can be with completely destroyed lungs. And in the end, the fact that she kept growing was part of her downfall, as her illness did not allow for her bad lungs to repair themselves as she grew. But it did not stop my Ella to flash smiles at everyone, stick her feet up and dance a jig, bounce her King Louie Monkey and Scruff (the wanna be reindeer) off her legs, play with her Pinky Bear blanket, sit in her vibrating chair or tumble form and count all her fingers so intently. Nope, it did not stop Ella from being a perfect little girl, loved and cherished by all who knew her.<br /><br />And as I reflect on Ella’s life, and though it is possible her illness came from me, I can’t help but think that if anything I enabled her. Enabled her to be a happy. Enabled her to be vibrant. Enabled her to be a fighter (she does have my pig-headedness and my “I’ll show you how it’s done attitude!”.)<br /><br />And as I continue to honour Ella daily, she is the one that is now enabling me. Enabling me to get up, smell the beautiful roses I left by her grave this morning and enjoy a wonderful fall Vancouver in the sun. </div><br /><div></div><br /><div>Ella enables me to live. </div><br /><div><br />Thanks baby, maman loves you and forever always will. No matter what! </div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-607057479383047875?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-16685184457255994332009-10-01T23:20:00.000-07:002010-02-21T22:46:08.511-08:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/SufmdJksMkI/AAAAAAAAABA/ayOyj_PtQo8/s1600-h/Copy+of+smile.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 318px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397536066887234114" border="0" alt="" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/SufmdJksMkI/AAAAAAAAABA/ayOyj_PtQo8/s320/Copy+of+smile.jpg" /></a><br /><div>It's been nearly a year....<br /><br />In fact, next Thursday, Oct. 8, will mark the one year anniversary of obvious physical signs that supported what already knew... That my daughter Ella was sick... and that I did not why or from what....<br /><br />How ironic is it that on the day I was taking a second formal step in figuring out how I can give Ella a brother or sister, the dreaded news came.... The news I'd been longing for, formally for a year minus a week although I questioned it from the day she was born... and which in the last few days I had secretely wished would never comes as a formal diagnostic...<br /><br />Today, hours after meeting with the counsellor that would "clear" me to become a mom again, I got the news... Ella had a disease... And that disease now has a name... A disease which I may have passed on to her... A disease which, clearer than ever now, would take her life... Ella was missing a very crucial gene and there is no way we could have ever predicted it... or even saved her...<br /><br />One doctor called it... And yet it was not thought of as being a the real cause for her illess... And then a pathologist called it, and still it was not thought of as being THE diagnostic... I guess science does not lie as today, both a doctor and a pathologist were in my thoughts and in my heart as I heard the news....<br /><br />Ella, my sweet, vivacious, bright as button and so happy and charismatic litte girl did not stand a chance... And now, I am faced with a whole lot more questions than I started my day with...<br /><br />Did I pass this genetic disorder to her... Can it happen again.... Could the stress and discontent that was surrounding me during pregnancy and what should have been the best days of my life contribute to Ella's illness? Could a diagnostic last November have rendered a better quality of life for my angel for those few precious months she had with us? Was there TRULY nothing we could do to save her?<br /><br />As I ponder on all of those questions tonight, I am in disbelief... Disbelief that such a perfect little girl, with a smile that lit the sky and eyes that saw right through your soul, could be striken with such a radical illness that it silently kills her from the inside out...<br /><br />Ella, I know was here for a reason. She has taught me so many lessons - some I never wished to learn and did not have a choice to learn; and some that were repeated to me for years on end and I still did not get them until now...<br /><br />And as I strive to honour Ella and do right by her, I am left wondering what the future holds and if I am right in thinking from the moment I realized something was off with my baby girl, that I did this do her, completely oblivious and unaware of it.... or if this was a fluke of nature that brought me my little angel to teach me a lesson and make everyone's lives around more meaningful because she was part of it...<br /><br />I doubt I'll find out about most of those answers in this lifetime, and in the meantime I will hang on to the thought that my beautiful angel Ella will send me the next best thing to her resurecting: a beautiful and healthy rainbow baby....<br /><br />ELLA<br />Everyone Loves Little Angels</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1668518445725599433?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-88721530954507827982009-09-23T21:13:00.000-07:002009-10-27T23:51:20.208-07:00<a href="http://2.bp.blogspot.com/_g1qWY5Uuho0/SufnC1-BO1I/AAAAAAAAABI/CtjXKLbj6Ns/s1600-h/DSC00237.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397536714459790162" border="0" alt="" src="http://2.bp.blogspot.com/_g1qWY5Uuho0/SufnC1-BO1I/AAAAAAAAABI/CtjXKLbj6Ns/s320/DSC00237.JPG" /></a><br /><div>On March 27...<br />One baby girl with a heart of gold...<br />And a will of steel...<br />Named after the greatest jazz singer of all times...<br />Received her so well-deserved wings...<br /><br />On April 4, it was so clear....<br />Clearer than it had ever been...<br />That one little being...<br />Brought together so many people...<br />A hundred people...<br /><br />People who conceived her...<br />People who are related to her...<br />People who loved her...<br />People who cared for her...<br />People who tried to save her...<br />People who looked after her...<br />People who prayed for her...<br />People who are her friends...<br />People who she touched with her smile...<br />People who's hearts melted when they saw and heard of her story...<br />People who called her a Saint...<br />People who did not know her but understood how great an impact Ella had all around her...<br /><br />On April 30...<br />I publicly spoke of Ella's brave fight for the first time...<br />On a radiothon to raise funds for BCCHF...<br />And where I asked donors to help...<br />Ensure that no parent at BCCH goes without a chair to rock their baby... their child...<br />And then the phone began to ring....<br />And it rang...<br />And rang...<br /><br />On June 14...<br />People came together...<br />To walk in Ella's memory...<br />After having raised thousands...<br />In tribute to her life....<br /><br />On August 7...<br />On Ella's first birthday...<br />People celebrated a life so precious...<br />Reminiscing about how happy she made all...<br />And people generously donated...<br />Dollars and gifts in her memory...<br />For children of BCCH to have a brighter day...<br /><br />By September 4...<br />Hundreds of gifts were distributed...<br />Throughout BCCH...<br />In memory of Ella...<br />Creatings smiles and giggles all around...<br /><br />Yesterday, a request came....<br />And contact was made...<br />To seek donations of rockers...<br />For ICU at BCCH who desperately needs them...<br /><br />Today, it was like a bolt of lightning...<br />That a few days from the six month anniversary of Ella's passing...<br />My one and only little angel continues...<br />To give me the strength and the sense of purpose...<br />I need to honour her and help BCCH kids and families...<br />Live a happier life....<br /><br />Today Ella's Tribute Fund was committed...<br />For rocking chairs for ICU...<br />Today I participated in a research project...<br />For science to help mothers conceive...<br />Today, BCCH friends remembered my Angel with me...<br />Today Ella's beau, Gavin, fell asleep so soundly in my arm...<br />While his mom and I just enjoyed each other's company...<br /><br />And at the end of the afternoon, as Gavin's started to wake with a giggle and smiles...<br />Ella Fitzgerald was playing in BCCH...<br />Just as it had at home and in the ICU throughout Ella's last week on earth...<br />This one song that more than any others connects me to my daughter...<br />And my heart filled with joy...<br />My eyes with tears...<br />"... the memory of all that<br />No they can't take that away from me<br />The way your smile just beams<br />The way you sing off key<br />The way you haunt my dreams<br />No they can't take that away from me..."<br /><br />The power of my one little Ella is beyond...<br />Beyond what I'll ever imagine...<br />As she has touched people we love and some never knew...<br />Motivating so many more to live better lives...<br />And enabling me to create a foundation in her name.<br /><br />That's the power of one...<br />One little rock-solid angel named Ella...<br /><br /><em><span style="color:#000000;">ELLA - Everyone Loves Little Angels</span></em></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-8872153095450782798?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-10096126823576092122009-09-10T21:57:00.000-07:002009-10-27T23:42:53.557-07:00<a href="http://3.bp.blogspot.com/_g1qWY5Uuho0/Sufn2kuzqbI/AAAAAAAAABQ/mHCFfvKBFDQ/s1600-h/IMG_0189.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397537603185781170" border="0" alt="" src="http://3.bp.blogspot.com/_g1qWY5Uuho0/Sufn2kuzqbI/AAAAAAAAABQ/mHCFfvKBFDQ/s320/IMG_0189.JPG" /></a><br /><div>As you read in my last few posts, the month of August - post Ella's birthday - has been rough. I would even say, very rough...<br /><br />You see, a year ago, Ella, her Dad and I were as close to being a family as we ever were. And would be...<br /><br />Ella was beautiful, vibrant, healthy, and happy. At least from the outside...<br /><br />A year ago, I was on maternity leave, enjoying my time off, my life and my baby girl. A year ago I was blissful... At least from the outside...<br /><br />This year, I am trying to mend the pieces of my heart, and of my soul... by myself. And definitely, starting from the inside...<br /><br />I'm not sure if there is an actual cycle on this journey that I am on, but this weekend, after a pretty crappy period, I feel like something clicked inside again I realized I need to continue to do what I feel is right for me, in taking care of me. This feeling was very similar to the feeling I had when I chose to go back to horseback riding, back in April, to save myself from a guaranteed drowning in my sorrows. And to the feeling I had back in late May when I told Ella's dad we needed to separate, for otherwise I would continue to be miserable in this relationship that was going absolutely no where.<br /><br />As hard as it is for someone who has always had everybody else's well being in mind before her own, I figured if I can't do it now, I will never, ever, be able to do it...<br /><br />So, on Sunday, I chose to spend time with a dear friend to treat myself to yummy desserts. On Monday, it was my barn therapy and two more meetings with friends I had not seen in way too long. Tuesday there were two firsts - my first yoga lesson and my first bereavement parent support group meeting. Both were instrumental in keeping me focused on the positive, though I have to say both required a tremendous amount of energy.<br /><br />The yoga for keeping my mind from wandering on to all the negatives that've plagued my life in the last years. And the bereavement group for facing 24 other parents who, like me, had their child taken away from them in horrible ways, but mostly for facing them on my own... as the only single parent in the group...<br /><br />I made it through though... on both counts. And I know I am better for it.<br /><br />And I will continue with both forms of therapies, as this is what I need now to regain some balance in my life before I rejoin the "real" world where everybody's got their own agenda cross to bear.<br /><br />And then today, after months of not being able to think of me, I moved closer to getting myself in the right place - from the outside in - being pampered for a few hours before spending an hour shopping for a new piece of clothing. Clothing that is pink - for Ella was a pink girl and in her memory, I try to wear some pink every day...<br /><br />All of this may seem very trivial to some, and not at all therapeutic to others but learning to put myself first is something I've always struggled with. My nickname in college was "Mom" - not because I had a child - but definitely because all I ever thought about was ensuring everyone else around me was okay...<br /><br />And Ella's situation was no different. For the entire time Ella was hospitalized, the number of days I "took a break" can fit on basically one hand. And if that was not enough, the one time I went out to get pampered, a few weeks before Christmas last year, Ella's state got so bad, she went from the ward to the ICU with the doc stating at the time: "I don't care if they have a bed or not for her in ICU, if they don't, we'll build a wing for her!". I still remember turning my phone on after my appointment onlt to hear the nurse say "Ella's been transferred to ICU. Please drive carefully"...<br /><br />We now know that Ella was very sick, all throughout her life, even though she never showed any definite and obvious signs until she was 2 months and 2 days old. If you've had the opportunity to speak with me, you know how guilty I feel about the fact that from the day she was born, I questioned her health - her breathing more specifically - only to be reassured by doctors and nurses who did not see Ella's problems for what they were... I often look back at pictures of Ella and can pin point exactly now how her body contorted because her lungs were so inflated... Little did we know at the time, but even the doctors who saw us every other week did not see it... I was just another stressed out new mom, or so every one thought...<br /><br />Part of that inside and outside work will be for me to understand that there is nothing I could have done to save Ella.<br /><br />That I was doing the best that I could to provide for my baby girl.<br /><br />And that until the day that I die, I will do everything that I can, not only to find out what happened to my daughter but also everything in my power to honour her memory.<br /><br />Every minute... Every hour... Every day... Every week... Every month... Every year...<br /><br />For as long as I shall breathe...<br /><br />Inside and out...</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1009612682357609212?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-21820451244233615472009-09-07T22:37:00.000-07:002009-09-07T23:31:20.306-07:00Today is Ella's 13-month birthday and I find myself with a big chip on my shoulder. It's been there for a long time, but it's been getting heavier in the last month.<br /><br />I know it is a recurring theme but I really thought I was making progress and realized this past week that maybe it's all in my head, and just a front...<br /><br />Since Ella's first year birthday, I've been feeling heavy and blue. My bones aches, my heart is shatterred in even more pieces and my mind goes numb - every single day and for what seems longer, and longer every day... I find myself retreating from certain situations and having difficulty getting motivated, and concentrating. Doing simple tasks are weighing on me...<br /><br />Yet, I am still doing all I need to do - eating (well, as well as I can right now, appetite is not there and neither is a desire to cook), seeing my doctor regularly, undergoing therapy - the real kind and the ones that is brought about by horses, the ones who truly, truly make me whole for a couple of hours a week - and spending a bit of time every once in a while with people who look out for my well being at BCCH. I know I need to exercise more, but right now, I'm having trouble. It's like I have a 50-pound weight attached to me daily, and I have to drag it all around...<br /><br />And even thouigh I feel very heavy and sad, yesterday I was able to be strong, for an hour or so, from someone who needed me - a fellow angel mom who was going through a rougher period than I was. I was there for her, and I was happy to be. She, just like other angel moms have been there for me when I needed it. It's like we know when the other is down and we move in.... But then, later on in the day, I wanted to be able to share my grief with the very one person that knows it first hand. What was meant to be a call out for help turned into another ackward texting argument with bitterness all around, and then, my knees buckled from the weight....<br /><br />Through it all, I am fortunate to have dear friends around me who look out for me. Eric, with whom I had savoury desserts last night when I really needed a distraction from the heavyness of the day.... Sebastian who I met for breakfast this morning when I barely had the strength to get up... And Lisa, who was there to get me through what would hve been a rough afternoon...<br /><br />And then later today, as I headed to spend time at the barn as I do every Monday - an activity that is my saving grace and has been since 14 days after Ella passed away - I ached. I just was not feeling it... I just did not want to be there... But I know how good I feel when I actually ride so I dragged myself... And then Chelsea did the rest!<br /><br />This sweet little mare has a grumpy side to her, but she is a sweetheart under the facade. She groans and nips but that's all it is - a facade and a way to protect herself. And I know that, because that's exactly how I am most days. I may appear joyful and happy - but that's all it is. A facade...<br /><br />Anyway, Chelsea today was again my saving grace. Minutes after starting to care for her, my heart lifted as she snuggled and let me do just that - take care of her. As we headed out to the paddock and started our work, I commented on the fact that it was sunny and warm yet it drizzled, and said to my coach "The only thing missing is a rainbow"....<br /><br />And then Ella did the rest...<br /><br />Within a minute and barely there for 30 seconds, was this huge rainbow, right at the base of the paddock and looking over us.... I ended having a lot of fun today... Getting back to my old self on a horse, and really loving it... And then taking care of a grumpy mare that underneath it all is playful and loving...<br /><br />I ended up with some actual weight off of my shoulder today thanks to my angel girl who I know looks down on me from Heaven... And tomorrow, I am hopeful that the weight will not be as heavy as I try not one, but two new activities on this journey I am on. First thing in the morning will be an attempt at yoga... And tomorrow evening, I am going to face my fears and my anger head on as I finally meet for the first time with fellow bereaved parents who also are on a journey they never wished to be on...<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2182045124423361547?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-33592969725715127662009-09-02T00:03:00.000-07:002009-09-02T00:57:30.651-07:00On July 23rd, 2009 I was basically a mess. Having a hard time dealing but thankfully friends were right by my side to cheer me on. On that night, Somewhere Over the Rainbow brought me to tears as I so wished I could be over that rainbow with my baby girl... And it became the subject of my blog.<br /><br />Tonight, it is again about Somewhere Over the Rainbow....<br /><br />As I prepared myself for what I felt was going to be yet another rough day (How does one know? You just know... How does one prepare? I really don't know other than have people who make you safe by your side), I heard that it was the 70th anniversary of Somewhere Over The Rainbow release by Judy Garland. I remember stopping on that specific thought - but then it went out of my head.<br /><br />I went about my day as best as I could - my heart not really in it - but at least I tried. It was not a horrible day, just one where I felt numb for most of it, and sad. Just plain sad - although you probably could not tell by just looking at me.<br /><br />But then at the end of the day, I made my way to see Ella. I didn't go see her yesterday so I was anxious to get there. And as it is so often the case, I just started to sob in my car and ended up crying almost all the way to the cemetary...<br /><br />As I parked my car, it started to drizzle. Not unsual so far, afterall this is Vancouver! I grabbed my pink cushion (I've discovered that cemetary grass is moist most days and leaves marks - the hard way!), my pink gardener kit (it's for breast cancer research, but you get the idea - Ella was all about pink) to rearrange her flowers and stepped toward my girl. And then it saw it...<br /><br />Right there, above Ella, was... a rainbow!<br /><br />I stopped in my tracks, dropped everything from the surprise, and then started to cry. Not for sadness, but rather for joy. For the fact that Ella, I know, sent me a rainbow tonight. A beautiful rainbow, with a definite line of pink... And the rainbow stayed right above us, for the entire time I was with my girl...<br /><br />I ended up going to catch a movie after seeing Ella. A fun comedy about life, love and serendipity. I came out feeling good about life again. Whether it goes onto tomorrow, I won't know just yet.<br /><br />But I do know one thing. Ella sends me signs. How do I know? I often ask Ella for signs that she understands what is going on in my life, why I made/make the decisions that I do or for signs of what's to come. Today was one of those days of asking for a sign... And just like everytime I've asked her for sign, one came and I was able to read it.<br /><br />There is an expression amongst bereaved mothers: rainbow baby... It means having a healthy baby after the passing of your child. Deep down, I've been wishing for that rainbow baby...<br /><br />Not to forget about Ella. Not to replace Ella. But because I was meant to give life, not death. And because Ella deserves to have a brother or a sister that will love her well beyond my life is complete. And because I still want to continue to be a mother... I was and still am damn good at it! Although I know that if I am that blessed, I will be a basket case for the rest of life, worrying about my child...<br /><br />Whether or not that could happen currently resides in one single medical answer - the one I am anxiously waiting to have and which probably will take another 6 weeks to arrive. Whether I am a carrier of a genetic condition that would explain Ella's illness...<br /><br />In the meantime, I will just continue to think that Ella is giving me signs, and that today she was pointing the way to my rainbow baby... and so in the meantime, I will go on with my journey.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3359296972571512766?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-63204667909548565382009-08-30T23:52:00.000-07:002009-09-01T23:29:14.821-07:00It's been days now since my last post, and fortunately the meltdown has passed and I am back on this road that is my journey. It took me nearly 5 days, one therapy session, many discussions with people whom I trust and who still don't fully understand what goes on in my head and my heart (hey, I don't either!) as well as countless tears and some soul searching to realize that while I chose to flee, I am convinced my instinct was right.<br /><br />Quite a few of my friends were worried. The bottom line is I chose to protect and keep myself safe of any further worry and anxiety by removing myself from a situation which, though it had wonderful potential at the time, included an element that hit by surprise and too close to home, at least for now. A meltdown did follow and though it lingered, in the spirit of continuing to honour Ella by rediscovering myself, I aim to move forward again, but mostly I choose to be gentle to myself.<br /><br />I am trying to include new elements to my days (for Ella, so that I can now see new things for her and I at once) and more structured activities so that I continue to progress.<br /><br />While I live minutes from the beach, I have not taken advantage of the ocean's beauty and serenity very much this summer. The heart was not in it, and I was afraid that I'd betray Ella by doing what I should be doing with her, without her... Turns out I need to do it without her physically with me, for me and with her in spirit. Not my choice but I don't really have a choice on the matter, do I!<br /><br /><p>So, I've started to integrate daily walks by the ocean, to keep myself fit but also to allow my heart to grieve. I do it without music, and just with my thoughts which most times go in a million directions and which also sometimes happen to be quite harsh toward myself, as well as toward others... I know I need to transfer those harsh and negative thoughts into positive ones but it does not always work. Most of the time, there are tears, as there are almost always when I am in my car, between my home and the cemetary... </p><p>But not every day is covered in tears anymore. They come in waves now, generally as I leave people who are dear to me as they return to their happy lives, when I go see my baby girl, still when I see a mom enjoying a private moment with her child, a dad holding sharing life with a baby or when I talk to my or Ella's dad's family and close friends.</p><p>Amongst the tears are puntuated moments of joy, like when Emma, Ella's best friend who is turning 2 tomorrow, ran into my arms and told me "love you Yo". My heart melted with joy on the spot, only to be swollen with tears later on that day when I realized I will never hear Ella say I love you mom.... Regardless of the tears, that afternoon with Emma, Danielles (Ella's Godmother) and her husband Chris was a good one, partly because of the company, partly because of the sun, partly because it was my first picnic at the beach of the summer, and partly because of the formations of Canada geese that I saw that day - another sign of my girl.</p><p>I finally made it to Trout Lake - it only took me 4 years! - and though it was a very bitter sweet day, I kept finding myself so amazed at how the moutains were so beautiful over the lake and the willow trees. I am blessed that Ella allows me to see nature in a whole new way. </p>Last night,<em> </em>I took another step toward being gentle to myself and getting back to my old person. I simply went to see a movie I very much wanted to see, by myself. I used to do that so often a few years ago, and I just did not know if I could. Fortunately, a very good choice of movie to distract me, and a stranger in the line up commenting on the heart necklace I wear daily because Ella wears the other part of it, made it a beautiful night.<br /><br />Although the thoughts of returning to work at some point creep up in my head with vibrations of anxiety, I now know that my road on this journey MUST include taking care of me, being gentle to me.<br /><br />Thanks Ella for helping me learn at 41 how to stop worrying and how to focus on me!<br /><br />One person very dear to my heart lost her dad this year and she went on a pilgrimage in Europe, in his honour. While I cannot physically, financially and most importantly mentally do that just yet, I know the time will come when I am able and willing to travel again, and she can see all through my eyes.<br /><br /><p>Baby steps they say. I say, every day is a new day and I never know what it is going to bring.<br /></p><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-6320466790954856538?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-56232888013545327642009-08-27T22:57:00.001-07:002009-08-27T23:28:59.778-07:00I thought I was doing so well...<br />Going about each day, honouring you as best as I could...<br /><br />I thought I was about to start a new chapter...<br />Meeting new friends and focusing on fresh interests....<br />That is until reality struck me right in the face...<br />And I found myself unable to face it...<br /><br />I tought I could take it...<br />But instead I took the back door and left like a thief....<br />Ashamed of my feelings of even caring for what was once...<br />And the fact that it was all a scam...<br /><br />I thought someone had my back...<br />And realized that no one but me can actually look out for me...<br /><br />I thought I was wiser...<br />But now I know that a lesson in friendship.....<br />A lesson in love....<br />A lesson in life...<br />Can show itself at any time of day...<br />Whether you are ready for it or not...<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-5623288801354532764?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-33138091806343710092009-08-26T22:33:00.000-07:002009-08-27T09:37:44.995-07:00As I started this blog last night, I was staring at 5 months... well almost. It was 5 months at 8:07 am today, the 27th....<br /><br />5 months of crazyness, emptiness and denial...<br /><br />5 months of wishing I could turn back time...<br /><br />5 months of struggles to keep my head...<br /><br />5 months of wanting to salvage my relationship while realizing it, too, needs to take its natural course...<br /><br />5 months of constant doubt about how this could have happened...<br /><br />5 months of trying to honour your memory...<br /><br />5 lonely months without holding you, my baby girl...<br /><br /><br />As I reflect on those 5 months, I can't help but be grateful...<br /><br />Grateful for my family's love, support but more importantly for my family's health...<br /><br />Grateful for your dad's family: their love, their support but most importantly the fact that they are also in good health...<br /><br />Grateful that I am able to grieve...<br /><br />Grateful that I am able to cry...<br /><br />Grateful that I am able to laugh...<br /><br />Grateful that I am able to look at a baby and smile...<br /><br />Grateful that I can offer some support to an angel mom who needs a long distance hug...<br /><br />Grateful that I am alive...<br /><br /><br /><br />And lately, I find myself grateful for different reasons...<br /><br />Grateful that I am able to slow time down to breathe deeper and more intently....<br /><br />Grateful that I am able to appreciate every moment for what it brings...<br /><br />Grateful that some time in October there will be answers...<br /><br />Grateful that my desire to live... and to be a mother have not left me...<br /><br />Grateful that you send me signs that I am able to recognize...<br /><br />Grateful that I feel you with me, always...<br /><br /><br />5 months ago... I held you for the longest time... and for the last time...<br /><br />5 months ago.. I embraced every moment you gave us... every ounce of the fighter you had in you...<br /><br />5 months ago... I said so long to my baby girl... and hello to my Guardian Angel...<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3313809180634371009?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-5899048068917336802009-08-26T21:06:00.000-07:002009-08-26T22:09:46.400-07:00It was bought after Ella's passing, a SuperHero teddy bear, from the BCCH Foundation fundraising campaign. I had gone for a walk late that afternoon and came across a stand that the bank had outside. There were two young ladies, selling Superhero bears and other items to raise funds for the BC Children's Hospital. I asked how much the bear was, and how long the stand would be there for. I'd quickly realised that their day was about to end as they'd started to pack up. I then asked them if they'd wait 10 minutes for me, that I wanted to buy a bear in memory of my daughter who just passed away at BCCH and after one of the young ladies agreed, I made my way to my bank to retrieve some cash to buy a SuperHero Bear. When I came back a few minutes later, I was greeted by surprise. It seemed the young lady thought I'd not return.<br /><br />On the spot, I decided to buy not one SuperHero Bear, but three. One for Ella, that I would keep for her at home, to remind myself of what an amazing hero she was and still is.<br /><br />One for Renaud, son of my dear sister Marie-Claude and Ella's big and loving cousin.<br /><br />One for Samia, daughter of my dear brother Jacques-Andre and Ella's not as big but just as loving cousin who also happens to be my God Daughter.<br /><br />For months, the three SuperHero Bears, all "male" bears, were in my home as a reminder of what we'd been through but also carrying a sense of hope that they'd help Renaud and Samia move on as well as help little kids get better.<br /><br />When I finally had the strength to prepare my family's Christmas presents that had been lying around the house for so, so many months - digital keychains that I loaded with pictures of Ella - I knew two of the SuperHero Bears had to go. I packed them up as diligently as I could and sent them on their way to Montreal for Renaud and Samia have and to hold.<br /><br />And then, a week before Ella's birthday, I decided to add a silent auction to her birthday party as a mean to raise funds in her memory. Upon making that decision, I asked the BCCH Foundation if they still had SuperHero Bears from that spring campaign, and if I could have a few for Ella's auction. I asked the Foundation for a couple - a male and a female.<br /><br />Once at the Foundation to pick up the Bears, it dawned on me that Ella deserved a female Bear. So, I quickly picked up two female Bears, and decided to use Ella's own male Bear for the auction. Afterall, it was brand new, with the tag on and had been sitting in my living room all along. And so Ella's Bear was promised to the auction.<br /><br />On the night of the auction, on Ella's one year birthday, there was a fierce battle for the male SuperHero Bear, a.k.a Ella's Bear. My friend engaged in an ongoing battle with another person for Ella's Bear - not knowing anything about this being Ella's Bear. He ended up winning the bidding war and as he paid me for Ella's Bear he said: "You have no idea what this means."<br /><br />On the following day, I told my friend about the fact that the bear he purchased was Ella's Bear. I wanted him to know because he said the Bear was going to his dear friend who now lives in the U.K. The bear seemed so special, I thought it would make it even more special for his friend to know where it came from. Little did I know! Turns out that my friend's friend is named Ella... This was a SuperHero Bear, purchased for Ella, in memory of Ella and now being given to an Ella... I just started to cry! I could not believe the coincidences! And yet, it seemed so completely normal, as if Ella, my Ella, had planned this all along.<br /><br />So, why write about Ella's Bear tonight? Because tonight as I saw my friend, he proceeded to tell me the story about why he wanted the male SuperHero Bear for his friend Ella. They'd been at the bank together and in a moment of childhood giggles, his friend Ella had picked up a SuperHero Bear, a male, and was flying him like a SuperHero flies in the sky. And today, as I listened to him tell me that story, I saw my little Ella, much older, healthier and happy, flying her SuperHero Bear, in complete giggles...<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-589904806891733680?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-35921004131634230012009-08-23T10:29:00.000-07:002009-08-25T22:39:35.460-07:00It was not until at about 2 months after Ella's passing that I started seeing a pattern. I was looking for signs from my little angel early on and really had not seen anything, although I asked her to come see me, but it was clear the signs were there, I just was not apt to see them at the time.<br /><br />The first moment Ella grabbed my attention was on the very day that Ella's Daddy and I returned to the ICU together. I had been back to the ICU by myself, almost everyday to be exact, but this was Daddy's first time since Ella had got her wings. It was spring, a warm day and the window on Daddy's side of the car was open. As I stopped at a light, something came in to the car and landed on Daddy. A tiny little red ladybug… She stayed on his arm while we waited on the light, and seconds before it changed, she flew out as gently as she came in. We both noticed it, but said nothing.<br /><br />The second time was a little later in the spring, a week before Mother's Day. I was sitting with friends at the ball park on a Sunday as I had done every weekend while I was pregnant Ella. And on that particular day, the many moms that were pregnant at the same time I was were enjoying a beautiful, relaxing day with their babies. As I watched them and thought of my baby Ella, no longer with us, I just cracked… I just flipped out and ran away in tears. I made it as far as Starbucks, a couple of blocks away, dried my tears, got myself a drink and proceeded to call my friend Cathy on my way back to the ballpark, still very emotional from the pain. As I reached the park, something just flew into by bosom… I yelled, then tried to wiggle the bug out (yup, I really did – laughing my head off by then while still on the phone) but nothing worked so I just gave up, finished my conversation with Cat and then sat back down on my blanket only to have not a bug, but rather a red ladybug slowly walk out on to my arm. It stayed there for a good 10-15 minutes. And then it just flew away.<br /><br />Soon after that encounter, I was going through all the condolences cards we’d received. One of the first one that came, from my friend Yvonne, just jumped at me. A simple photograph on the cover: a beautiful white mum, with a gorgeous red ladybug. It still did not really dawn on me…<br /><br />And then, as I was going through documents, I came across something I’d completely forgotten about. A photo session was done at BC Women’s Hospital, on the day that Ella was discharged. On that day, I finally dressed her up in one of the outfits I finally bought. I had picked a preemie onesie, white with a bit of red and yellow, but most importantly it had a ladybug on it with a French line “Une cocinnelle avec des ailes” (a children rhyme that means a ladybug, with wings). By then, the memories of the ladybugs I encountered resurfaced… and it all became so clear. Ladybugs were Ella’s call sign to me!<br /><br />Afterall, both my sister and I had been a “cocinnelle” when we were kids (competitive gymnastic team). And then, there was the outfit that her Dad picked for her (a top actually as he forgot to bring a bottom!). It was a cream colored camisole with a red sweater chale that tied up at the front. On the bottom right of there was a big red ladybug, and at the top, a couple of lsmaller adybugs separated by flowers.<br /><br />An then, there was the ladybug that just flew on to my friend Charles, while were were in an indoor garage talking about Ella coming to me as a ladybug and about the fact that, an hour earlier I asked Ella for a sign that it was okay and she understood mommy’s reasons for separating from Daddy….<br /><br />So, since that day, ladybugs and other winged creatures have been coming out of nowhere to help me deal with my grief and cheer me on with my life. More chapters of the ladybugs and other winged creatures will follow shortly. You’ll just have to be patient for one more day or so!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3592100413163423001?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-64574339877389050382009-08-21T21:10:00.000-07:002009-08-22T18:49:55.153-07:00Those of you who are in Vancouver and have seen me since Ella's passing know about the power of 7. For those of you who are away, here is the scoop: Ella was a perfect 7...<br /><br />She was born on August 7<br />At 5:47am<br />Weighing 5 lbs, 7 oz<br />Wearing bracelet 1446271<br />From a dad born on a 16<br />And a mom born on a 29<br />And being conceived on a 27th<br /><br />Her birth certificate, social insurance and BC Healthcare numbers all have 7s<br /><br />Her symptoms started on a 7th<br /><br />Once in ICU she was admitted to bed 17<br /><br />Her parent's first evening out since being admitted to the hospital was for a benefit for BCCH on Jan. 29<br /><br />The second time was out for Mom and Das was Feb. 11 at 7pm<br />For a Giants Hockey game<br /><br />The third time was on Feb. 27 at 7:30pm<br />And I was seated in seat 4 of row 3 for another Giants game<br /><br />The fourth time was March 7<br />For a Cancuks hockey game at 7pm<br />Seating in row 7<br />In seat 3 and 4<br /><br />Ella passed away on March 27<br />at 8:07am<br />At 7 months +<br />In beds 17/18<br /><br />The first donation in her memory was over $700<br /><br />She was laid to rest on April 7<br />At 10:30 am<br />Weighing 7.09 kilos<br /><br />On August 7, she turned 1<br />Her happy birthday wishes were published on page B7 of the Vancouver Sun<br /><br />On August 17, at the golf trounament in Ella's memory I had a meltdown on hole 16<br />And my best hole of the day on hole 17<br /><br />Ella's Facebook bereavement page currently has 7 members<br /><br />So what does this all mean? There are so many more occurences of 7 around her and I as remember them, I'll be sure to update this posting. As one of my friends pointed out to me, 7 is the biblical number of perfection. Ella was and still is a perfect 7!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-6457433987738905038?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-27347153479731679252009-08-20T21:48:00.001-07:002009-08-24T14:16:57.841-07:00As 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.<br /><br />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...<br /><br />For tonight, I'll settle on counting my blessings.<br />The blessings that come clearer in the sky when I am feeling more at peace.<br />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.<br />The blessings for my mom and dad who through this painful time have both been rocks for me in their own rights.<br />The blessings that I can see a pretty flower and say thank you to Ella for opening my eyes to it.<br />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.<br />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.<br />The blessings that bring old friends together to share very special moments which make you whole again.<br />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.<br />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.<br />The blessings of doctors who fought so hard to figure out what was going on with my girl, and to save her.<br />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.<br />The blessings of Martine who before we flew to Montreal offered all her baby gear to make Ella comfortable on our trip.<br />The blessings that I can now spend some time with friends and their babies - and appreciate life with them.<br />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.<br /><br />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.<br /><br />In the meantime, I will continue to count my blessings.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2734715347973167925?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-40925835645883843702009-08-19T23:08:00.000-07:002009-08-21T21:08:30.190-07:00How do I? How do I get myself to a place where I am at peace?<br />How can I? When you are up there on your cloud instead of being right here with me, in my arms...<br />How do I? How do I stop the hurt from over powering me every day when I know if you had lived you'd be doing something new for me to rejoice over?<br />How do I? How do I deal with the thousands of questions I have in my head on how this could have happened to you?<br />How can I? How can I stop the guilty feelings I have that I somehow caused your illness?<br />How do I? How do I turn time back time, to a day where you were healthy and happy?<br />How do I? How do I cope when everyone around has returned to their own lives and I am left with an empty one?<br />How will I? How will I react when I finally get answers on what’s to come?<br /><br />Hows are the big questions. And they leave me so empty of answers at this stage. I am doing all I need to be doing to "fix" myself and I know I am making progress. Yet I feel still, after almost 5 months, like it's 1 step forward, 3 steps backwards. And that's on a good day!<br /><br />My heart aches for the fact that your dad and I cannot find the right way to communicate and grieve together. My heart screams for you to come see me in my dreams.<br /><br />I miss your touch, I miss your smell, I miss your smile. I miss my baby girl and I am terrified that time will rob my memories of you and that they will fade away.<br /><br />Don't ever leave me. I need you by my side. Always.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-4092583564588384370?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-1673590672749861812009-08-13T21:53:00.000-07:002009-08-21T21:07:35.447-07:00731 days ago, I was meant to play golf in a tournament but my foursome fell through...<br />731 days ago, I photographed friends enjoying a day of drinking and golfing…<br />731 days ago, I saw a man with a sweet smile, a big heart and nice buns…<br />731 days ago, a man captured my attention by sticking his tongue out at me…<br />731 days ago, I found myself intrigued…<br />731 days ago, my heart started to beat faster…<br />731 days ago, your daddy and I met...<br /><br />Two years have gone by since the day my eyes met your daddy's eyes…<br />Two years have gone by since your daddy told me we'd forever be connected...<br /><br />Little did we know we'd have a miracle coming our way to brighten our lives and enlighten so many more…<br />Little did we know how much we’d fall in love with you…<br />Little did we know that our miracle would become an amazing angel…<br /><br />731 days ago, I’d never dreamed I’d be where I am today…<br />731 days ago, seems like an eternity… and yet, it’s like it was yesterday…<br />731 days ago, the writing was on the wall...<br /><br />I love you Ella, my angel! And so does Daddy. Forever and always…<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-167359067274986181?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-63287368277349468702009-08-10T22:17:00.000-07:002009-08-11T09:02:13.387-07:00As I headed to see and spend some time with Ella this morning, it occured to me that today was the day.<br /><br />The day that, had Ella been healthy, I would have had to return to work. Not only would have had to stop spending my days with my baby girl, today would have been the day that she would have had to join daycare, or be with with a caretaker other than her dad or myself. I just started to ball at the thought that Ella and I will never get to experience so many of those moments that you never think you will be robbed of...<br /><br />Instinctively, I've blocked off the thoughts of milestones. And as silly as it is, I was just two days ago writing to another angel mommy about the need to celebrate the milestones and to embrace the ones we will never get to see. The only milestone I was focused on for the last few months was Ella's first birthday. And while I drove myself mad to make sure all was perfect on that day, and it almost was, it never occured to me that today would be the day to make me break down again...<br /><br />Afterall, I thought I was doing okay. Keeping Ella's memories safe and secure not only in my heart but in a few special boxes in the living room where I can always access them as I need to. In there, if you know where to look, you'll find her birth certificate, her hospital bracelets (I've kept them all), her first princess sticker and her first snoopy bandaid. The pictures of her as a tiny peanut, in my tummy, The picture cds and videos I've copied so that if I lose the data on my computer, I don't lose her. There is also a tooth case which is empty... and her baby book which I still have not had the strength to complete....<br /><br />Today would have been the day....<br /><br />Instead, today was the day that I went for one of my weekly therapies, feeling like I had to more than I wanted to - a couple of hours at the barn, surrounded by nothing but horses who instinctivey know that my heart is broken and my soul is soul-less. And as I focus on connecting with the horses, I reflect on the fact that today is a gift that Ella has given me.<br /><br />You see, Ella and I were supposed to make horses our thing. While I've done it all my life, Vancouver and horses had not yet equated. There was too much work, not enough money, too much to do... You know the drill and the excuses... But a few weeks after Ella passed away, I knew that if I ever wanted to stay alive, I had to go back to my roots and focus on something that throughout my life had brought me peace and happiness. And that focus comes with horses. I'd contacted a young lady who took heart to my story and brought me in to the barn where she keeps her mare. I was meant to try out her mare but chickened out. I did however that day make a commitment to ride again, and I have. It only makes sense since there were so many signs Ella was sending me: the young lady I connected with is from Mtl, she's got an advertising background like I do, we both share a passion for photography and most importantly, her mare's name is Lilly - one of my top picks for Ella before she was born. Some would say it's just coincidence. I say, it's Ella pointing me the way.<br /><br />And today was the day that after 4 months, I found myself giggling on a horse as I jumped a fence with so much "override" I nearly fell off.<br /><br />Though she's always with me, today is the day that Ella and I both rode together truly for the first time.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-6328736827734946870?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-49162553406414324822009-08-09T22:00:00.001-07:002009-08-09T22:30:00.812-07:007 aout 2009<br /><br />Ma tres chere petite Ella,<br /><br />Aujourd'hui, a exactement 5h47am, il y aura un an que tu es nee. C'est avec le coeur gros et plein d'emotions que je t'ecris pour te souhaiter bonne fete. J'espere que le ballon auquel cette note est attache montera jusqu'au Paradis, a la Grande Table pour t'amener mes voeux et la photo de toi, papa et moi pour que tu ne oublies pas.<br /><br />Saches ma petite cherie que tu es et resteras toujours ma petite fille et ma grande fille.<br /><br />Maman est si fiere de ton courage et de ta determination. Tu t'es battue a la vie, a la mort comme je n'ai jamais cru possible et tu as defie toutes les attentes de l'quipe medicale.<br /><br />Ton sourire moqueur, tes petits pieds dansants, tes poses lounges et relaxes et ton odeur, ta douce peau et ta rippe sur Papa resteront a jamais graves dans ma memoire.<br /><br />Tu as touche un si grand nombre de gens Ella - Sainte Ella - bien des gens sont changes a jamais grace a ton courage!<br /><br />Permets-moi maintenant de te chanter " Ma chere Ella c'est a ton tour de te laisser parler d'amour'"<br /><br />Je t'aime,<br />Maman<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-4916255340641432482?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-13519312910663014942009-08-07T00:06:00.001-07:002009-08-08T22:52:01.844-07:00As I start to type, it occurs to me that a year ago, at this very moment (12:07am), I was fast asleep on the futon, with a plastic nap under the sheet, in case my water broke. I'd just been induced that morning with the assurance from my OB that my baby girl would take at least 48 hours to show up. I'd been having what I thought were Braxton Hicks that evening after I had spent the day at the beach with my girlfriend Mireille. I was crampy but I was feeling fine.<br /><br />NOT!!!<br /><br />My water broke at 12:20 am (thanks to all the good advice I got from friends for saving my futon!), and soon, the whirlwind started: call daddy to be who was still in Whistler celebrating a friend's wedding (thank goodness for voicemail and text messaging!), call the doula to say "what do I do?", call the hospital to see if I should come in, grab my bag and drive myself to BC Women's Hospital (the Oak/Broadway street contraction is the only one I remember...). Park the car, make my way in to assessment room, meet my doula there (1am), double over while daddy to be finally calls to say he's on his way and then all I remember is my doula showing me how to push away the pain; how I am in pain; how much I want drugs, and how much it hurts so I end up actually puking a couple of times from the pain! (at 1:38am with contractions every 3 minutes) What a mom won't do for her girl :)<br /><br />By 3:10am: 100% effaced and baby's head is ready to come out. Nurse Rose has been great. And soon Nurse Kelsey takes over. But not without the supervision of our doula Jacquie. By 3:35am, daddy to be finally shows up... I am too much in pain to actually yell at him for not being here sooner. It's time for the epidural, thank you very much! (4am).<br /><br />It won't be long before I actually realize that everything I've planned is going out the window. The computer with my push, relax and "ye, she is coming and is here"music mix is at home and not in the car where it was before my doc told me I had at least 48 hours... The camcorder, the battery candle that looks so real, the camera... all in the car... But in the midst of it all, I managed to exclaim "I'm a supestar!!!" (note that the "r" is missing for a reason - great drugs!)<br /><br />By 5am, I've convinced Chris to get the camera, and as Dr. Kenyon comes it's finally time to push. It seemed to be many pushes but according to Doula Jacquie's notes, 3-4 pushes was all it took. I'm told it was all very smooth.<br /><br />At 5:47am, Ella Jacqueline Dupont Bedassie came into this world. What a precious little girl. Our miracle!<br /><br />She's put on my tummy and quickly, Chris cuts the cord, the doc takes her away to do their stuff for a few minutes, then she's back with me and Chris when she just grabs on to his fingers. It was the first of so many moments where our darling little Ella grabs on to her dad. A moment we managed to immortalize in so many pictures and with a LifeCast statue.<br /><br />I apparently said "I can't believe it was that easy!". And I remember saying to the staff and our doula who wanted to know her name that Ella was "named for one of the most famous jazz singer: Ella Fitzgerald".<br /><br />Ella Dupont Jacqueline Bedassie weighs 5 lbs 7 oz, measures 18.9 inches and sports a full head of dark hair, just as I did when I was born. What a wonderful start for yor precious life!<br /><br />After all the excitement, dad set up his cot and quickly passed out, snoring as if he'd done all the work! And mom concentrates on breastfeeding little Ella. By mid-morning, we were transferred to Balsam where our first nurse Chris would take such special care of the 3 of us. He turned out to be our nurse for 3 out of the 5 days we spent at Women's Hospital.<br /><br />There will be many more tales to come as I journey the first days, weeks and months of our life with Ella. But in the meantime, allow me to say:<br /><br />"Happy Birthday my darling Ella. Maman and Daddy love you to infinity and beyond, forever and always!"<br /><br /><br />Maman<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-1351931291066301494?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-30139978756583266972009-07-27T22:28:00.001-07:002009-07-28T21:26:56.249-07:00As I sit tonight and reflect on the last four months, I can't believe how quickly time flies and how badly I want to find a time machine to go back in time...<br /><br />I very well know I can't do that and so I ever so gently move forward in my journey, counting my blessings for every beautiful thought and memory of Ella, so happy that she got to meet her paternal and maternal grandparents, her cousins and her aunt. I now strive to see the world for her. 1 step forward, 3 steps back is how it feel but it's probably more like 1 step forward, 2 steps back.<br /><br />On the evening of Ella's passing, after spending the entire day with my baby girl in my arms saying my goodbye, giving her one last bath, making moulds of her hands and feet, touching her cheeks, stroking her hair and dancing with her so that I never ever forget the feeling of her in my arms, I was fortunate to hold a very special boy who beat all the odds. We'll call him baby A, a twin who before he was born showed a very serious heart condition to his parents and medical team which required open heart surgery days after he stepped out into this world.<br /><br />Baby A was back for a visit in Vancouver in March and our paths crossed as it had happened when his mom and I spent time together during our pregnancy. This time though, I knew he was not out of the woods and held on to him as I held on to Ella in those last few months. With the hope that all would be okay, with the fear that life could always take a turn we would not expect.<br /><br />I always felt that baby A knew exactly how I felt that night, and what had happened to my baby girl who hours earlier had earned her wings and went to sit at the BIG table. Baby A not only got me through that evening without me feeling any panic and distress, baby A who I still see and hold every once and a while, gets me through the current pain of outliving my daughter. It's like he knows that I am a mommy with a broken heart and he protects me.<br /><br />I like to think that Ella makes sure both of us are protected by her brave heart and soul. Baby A is doing well, and though he is smaller than his brother, he definitely has a force, a wiseness already present beyond his almost one year.<br /><br />Thank you baby A for showing me it's ok to hold a baby and not feel guilty. Thank you Ella for allowing me those few precious moments of peacefulness and for making me want to make every day count.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-3013997875658326697?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com2tag:blogger.com,1999:blog-3164620254772572701.post-29179439842116867532009-07-26T23:08:00.000-07:002009-07-28T09:08:11.608-07:00As I start this note, in exactly 9 hours, it will be 4 months... 4 long lonely months since Ella earned her wings and took to the sky. I was thinking about that specifically this morning as I drove to go see my baby girl at the cemetary. Yes, I still go spend time with her where she is layed to rest, every day. I know I don't have to, but I need to right now, just as I spent so much time with her on the day she left us, and the day after and after.<br /><br />As I was pondering how quickly time flies, this song came on the radio. The host had said it was a new hit so I started paying attention. As I processed the words, my brain screamed "that's me, that's me!". I felt it was all about me, about my pain, about Ella and how she watches over me, always. I just started to ball...<br /><br />Here are the lyrics of that song which overtook me with the strongest emotions. I have no clue what brought that author to write it in such a way, but I completely can relate to every word.<br /><br />CHANTAL KREVIAZUK - INVINCIBLE<br /><br />I thought I had the right day, but I was in the wrong place.<br />I tried to open a door, but got it slammed in my face.<br />I'm at the back of the line, feels like eternity.<br /><br />Well, they tell me I'm gettin' close, but I know I'm still far.<br />You can dress me up, but you can't cover my scars.<br />I've become a professional at hide and seek.<br /><br />I'm a danger to myself.<br /><br />I can take a wrong turn, you're right behind me.<br />Crash and burn, I know you'll find me.<br />As long as you're here, I'm invincible.<br /><br />I can call your name and you'll come running.<br />It's pouring rain, you'll make it sunny.<br />As long as you're here, I'm invincible.<br /><br />Want to be part of the cure, but I'm part of the disease.<br />I can chase butterflies, but I get stung by the bees.<br />Sometimes I think too much, forget my clarity.<br /><br />I bought every self-help book that I could fit on the shelf.<br />Too many Downward Dogs, they can be bad for your health.<br />I don't know who I am, so much for therapy.<br /><br />I'm a danger to myself.<br /><br />I can take a wrong turn, you're right behind me.<br />Crash and burn, I know you'll find me.<br />As long as you're here, I'm invincible.<br /><br />I can call your name and you'll come running.<br />It's pouring rain, you'll make it sunny.<br />As long as you're here, I'm invincible.<br /><br />I'm not the same old girl, no.<br />I want a brand new world.<br /><br />I can take a wrong turn, you're right behind me.<br />Crash and burn, I know you'll find me.<br />As long as you're here, I'm invincible.<br /><br />I can call your name and you'll come running.<br />It's pouring rain, you'll make it sunny.<br />As long as you're here, I'm invincible.<br /><br />I thought I had the right day, but I was in the wrong place.<br />I tried to open a door, but got it slammed in my face.<br />I'm at the back of the line, feels like eternity.<br /><br />http://www.myspace.com/chantalkreviazuk<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2917943984211686753?l=ellapourtoujours.blogspot.com' alt='' /></div>Vangroovymomhttp://www.blogger.com/profile/09076044763541549733noreply@blogger.com1tag:blogger.com,1999:blog-3164620254772572701.post-27447400243705154672009-07-24T20:20:00.000-07:002009-07-24T20:22:54.789-07:00When we left the hospital to come home after Ella's second hospitalization, my little darlin' Ella was on home oxygene therapy. That meant that before we came home, I had to pack up all my candles (and believe me there were more than 2 dozens spread all around the house) and put them away with the lighters and matches so that we would not blow up the house by mistake. Considering we had over 20 canisters of highly combustible 02 in the living room corner, it was a wise decision.<br /><br />One of those boxes of candles never actually made it to storage and has been by a table, in the living room for months. I walk by it every day, look at it and think, I should light a candle. And then I don't do it. It's been this ongoing "I should "then don't dance for months now.<br /><br />The only exception to that dance is THE candle that is always lit in my room, no matter what time it is. It is Ella's candle. A candle I got for her when we returned to the hospital on Ella's third hospitalization. A wax, vanilla scented candle that back then at the hospital too was always, always lit. It spooked everyone at the hospital! Each doctor and nurse we encoutered for the first several weeks of that stay would just jump and panic at the site of it. What's a candle doing on a baby's bed in the ICU? Are the parents that crazy??? They all had the same reaction :) Ella's candle is battery operated but it looks so, so real! It became a running gag with caregivers just forgetting it was not real and jumping when a blanket would get too close. Irt had everyone giggling at the sight of a new nurse doing a double take upon coming near Ella's bed.<br /><br />So, for almost four months now, there's been no other candle light in my house, though I love the flickering dance and the smell of candles. But tonight, something has changed...<br /><br />Today was baby Trey's 4-month birthday. And because it was Trey's birthday, his mom Sharon lit candles in her home, as did her family and friends. So, tonight, as I imagine Ella giving Trey a tender kiss for his birthday, I lit a candle for Ella, and a candle for Trey.<br /><br />Tonight, there is a light. And tomorrow there will one, and hopefully one less "I don't" too...<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-2744740024370515467?l=ellapourtoujours.blogspot.com' alt='' /></div>Marie-Claudenoreply@blogger.com0tag:blogger.com,1999:blog-3164620254772572701.post-57316456189547864372009-07-24T18:38:00.000-07:002009-07-28T09:03:03.140-07:00<span style="font-family:trebuchet ms;font-size:100%;">This blog is dedidated to our little angel who make us smile and believe in life.</span><span style="font-family:trebuchet ms;font-size:100%;"><br /></span><span style="font-family:trebuchet ms;font-size:100%;">Ce blogue est dédiée à la mémoire d'Ella, ce petit ange qui nous fait sourire et aimer la vie.</span><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/3164620254772572701-5731645618954786437?l=ellapourtoujours.blogspot.com' alt='' /></div>Marie-Claudenoreply@blogger.com0