19 Nov 2012

Ribbon Decisions...

A great question came up today on The Linden Fund's Facebook page, which I have questioned as well, and I know many others have too.

Where did this purple ribbon for "prematurity awareness" pop up from all of a sudden? Where did the pink and blue concept go?  Why is one agency using purple and others pink and blue?  In case it's not obvious, we premature parents focus on the little things as soon as our little premature children hit the scene.  Little things matter.

If you look around the world at all the prematurity awareness agencies and campaigns-you will mostly see the colours pink and blue.  Then this year purple appeared in a wave as each country went into the dark hours of the night on November 17. Purple in Toronto, Purple in Niagara Falls, Purple in NYC, Purple in Disneyland! Purple throughout South America, Istanbul, Italy, Ireland, Australia...you name it, many chose to get in on the display of purple during the Global Alliance to Prevent Prematurity and Stillbirth Global Illumination Initiative. Did you know that's what it was called? Purple was present last year for World Prematurity Day as well, but on a much quieter level.

How is it possible the choice of purple swept over the world?  Excellent marketing management, I would say.  Strong outreach and communication across the world with other partners, such as those in the Global Alliance, working hard to decrease birth defects, preterm labour and delivery, and infant mortality. March of Dimes does this.  After what I would call a simple "re-brand", they started using the purple ribbon in recent years after many years using the pink and blue as their preference for birth defect and prematurity awareness.

If you look at the March of Dimes' website, the ribbon pin for sale is called "March of Dimes Awareness Pin," not the "prematurity awareness pin." <Click the link for a pic. March of Dimes focuses on the health and well-being of the mother during prenatal care, as well as the health of premature and term infants.  I'd say their purple ribbon encompasses the overall health and wellness of mothers and babies--not just based on prematurity alone.

Other prematurity support agencies use purple, green, pink or blue, or blue and gold in their own specifically designed Prematurity Awareness pins or materials.  I kind of like that many countries take on their own unique style and prefence when choosing their awareness pins.

As we are well aware, March of Dimes in the United States has a preference for purple.
Little Big Souls in Africa prefers purple for wrist bands and blue, gold and white for other awareness items.
European Foundation for the Care of Newborn Infants (EFCNI) likes purple.
National Premmie Foundation of Australia has gone with purple and green.
Irish Premature Babies uses pink, blue and white.

Now, I am writing from Canada...just outside Toronto.  On Saturday night I went down to Toronto to see our beautiful CN Tower lit up in purple.  In Canada there is no one, strong and well-funded formal organization that works with those impacted by preterm birth or the aftercare of preterm babies. We have The Linden Fund, which I refer to often (and I LOVE), but they are no March of Dimes or larger organization.  Sadly, I didn't hear a peep out of our media until after all of Toronto wondered why the CN Tower turned purple on Sunday night.  As I walked through downtown Toronto, I heard several people wonder aloud, "why is it purple tonight?" There was a little bit of news leading up to it, apparently, but not much. This fact is seriously disappointing to me.  In a country this size, with this many people and a serious need for population replacement, nobody seemed to know about the importance of Saturday, November 17--aka World Prematurity Day.

Then this month, leading up to World Prematurity Day 2012, a new organization arrived on the Canadian scene.  The Canadian Premature Babies Foundation.  The founder is also a mother of twins, born at 27 weeks.  I can only assume she also found it very hard to get the right type of support and guidance during her preterm experience with her multiples.  We do live in Canada, known for its amazing healthcare and universal benefits, but we lack in the area of prematurity awareness and support...according to me. Perhaps this is why we are undecided on colours for awareness purposes. We are thousdands of parents, working hard to find the answers, connect with the right people and best services we can find for our preterm infants and young children, which we often do alone.  Many preterm families are slipping through the cracks and I hope this new Foundation, in partnership with The Linden Fund and a Quebec organization called Prema-Quebec can build a stronger network for preterm families and those who provide lifesaving services to them (hospitals, medical staff, and additional support agencies.) 

Now back to the awareness ribbon that got me started on this topic...Perhaps once we build a stronger preterm network of parents and medical professionals, we can choose our awareness or cause colours...but in the meantime, I suggest pink and blue with two small purple butterflies on the lower ends of the ribbon.  Why butterflies and not baby footprints? The butterfly in many cultures across the world represents the "soul."  The butterfly was described as, "It’s connection with the soul is rather fitting. We are all on a long journey of the soul. On this journey we encounter endless turns, shifts, and conditions that cause us to morph into ever-finer beings. At our soul-journey’s end we are inevitably changed – not at all the same as when we started on the path."  This is a perfect description for how a mother and father are impacted right to the core--the soul--when they face the uncertainty of having a preterm infant, the ups and downs in a NICU, the baby's strength and ability to often pull through.  This is why I feel the butterfly belongs on a Canadian prematurity awareness ribbon. 

18 Nov 2012

Preemie Power Tower! World Prematurity Day 2012

So I heard a few days ago that the CN Tower in Toronto would be lighting up purple in honour of World Prematurity Day and I got all excited at the prospect of seeing it myself.  How could I justify a trip down the highway-about a 45-50 minute drive away on a good day-to see a Tower I'd seen thousands of times before.

Think, think, think.

My mother pointed out this week, that once I set my mind to something, I usually make it happen.  So I thought and thought...and began looking into a reason I could take the trip.  Luckily, a pretty special event was happening downtown, which I've never actually seen.  The Cavalcade of Lights.  The Christmas tree and city hall area being lit up with lights for the coming holiday season. Perfect!  A night of nothing but looking at pretty lights.

Date night for Proud Preemie Mom and Dad!  That never happens!

Off we went down the 401 to see a tower I grew up 20 minutes away from. A tower I've seen thousands of times. Yet I've never seen this thing purple! The fun part of tonight was my husband had absolutely no idea what I was up to (because he would have thought I was a little looney,) so heading down the highway he's guessing and guessing.  Finally it occurred to him I'd slapped a purple ribbon on his jacket just before we headed out, I was wearing one, as well as a purple shirt and scarf. By George, I think he's got it.

So we wound up having a nice date night out on the town. Took pictures at the CN Tower like only tourists do. Had an awesome dinner. Then saw the lights festival.  A special evening wrapped up a special day.

Earlier in the day I did my share of tweeting and Facebook posting to spread the word about World Prematurity Day. I stuck a camera in my 3 preemies' faces more than they approved of and earlier today I still wasn't 100% sure I was going to get to Toronto, so I asked anyone that may be in the area to take a picture for me. Thankfully I got some of my own and here are a few.


15 Nov 2012

November's such a busy month!

With International Multiple Birth Awareness Week last week, Remembrance Day, the overall month of November being "Movember" raising awareness for men's physical and mental health and then coming up this Saturday, being World Prematurity Day...it's hard to choose one topic to focus on. So I didn't!

For this house, multiple birth awareness week is every week of the year! Our twins are just two and still look so similar that it's a common occurence to talk to people about their twinness, their birth experience, their NICU experience, their current status of development and everything else related to the twin life.  The fact that I have taken on two recent formal roles to raise awareness and help families of multiples and families of preterm birth multiples only adds to the fact that I pretty much live and breathe "multiples."

For those that aren't in the know I have taken on a role to work as a peer health worker for my local POMBA.  The role officially kicks in January 2012, but I'm taking some heavy duty training for certification, on top of my full time job and full time mommy duties.  It's been exhausting, but a very rewarding and exciting time!  In addition to that I am now co-chairing the Multiple Births Canada Preterm Birth Support Network (PBSN,) which is brand spanking new and being developed right from scratch.  As a mom of preterm children-my tiny singleton and my teeny tiny twins-I know how challenging it was to get the right kind of support for my family in the early days and even after we all came home together.  It was a lot of late nights up researching at my computer, looking for answers and guidance.  With determination and many cups of coffee and tea, I did find leads to great things for our twins beyond the standard referrals to occupational therapy, speech and physio.  There are many services and agencies available to provide support if you know where to look...which I know from talking to moms and dads, we don't know where to look. We don't necessarily know the questions to ask.  I credit my background in social services and research for finding things, but had I been able to refer quickly to one source of support and get the information right away, we would have saved a lot of time.  The fact I had 3 little boys to manage during the day meant my research really could only be done when everyone was fast asleep. So we hope the MBC Preterm Birth Support Network will be the go to for Canadian parents of preterm multiples for support, guidance, advice and referrals. So if you are Canadian and are preterm multiples parents or know of a family that is in need of support or even just needs a few questions answered, please refer them to Multiple Births Canada's website, linked above.  There are many great benefits to becoming a member of Multiple Births Canada, the PBSN being just one of them.

Now on to Movember. I live in a house with 4 males, thus Movember is definitely important to me! So here are my 3 sons saluting this important month of awareness for men's health...

This past sunny, unusually warm Sunday, November 11, we made our way to one of the local cenotaphs to remember those who have fought to keep Canada strong and free, including a certain great-grandpa and great-great-uncle. Their WWII stories will continue to be passed on from generation to generation.

So it's been a very busy month and it's only half over! 
And coming up in 2 more days this page will turn purple...