Monday, December 15, 2014

Gifts for Christmas Mourning - Gift of Alturism

I meant to post this yesterday...and I'll explain why in a minute... but I just got run down in the lazy effects of too much good Christmas food and too much time spent 'keeping it together'.  Now don't misunderstand, Saturday, our sixth 'angelversary' actually was a really good day and I really didn't have too many emotional moments but there was still a sense of emotional exhaustion yesterday.
I wasn't sure what to call this day.  I didn't know if there was a word for what I really feel was born out of the emotions I felt on Dec. 14/08 as we drove back from Toronto, our lives forever changed, and into Monkton where everything looked the same.  We both were very emotional as we realized that the town, the people, the community, our friends...all of it was the same and none of them could comprehend that we were feeling like the world was a completely different place. And ironically, in these moments of sadness and disbelief, both Geoff and I said out loud that we wanted to do something to help others who were experiencing a pregnancy crisis, specifically TTTS. I look back now at all that I've done in 6 years and I can see how God used Cole's death and Cameron's survival for good....which I'll get to later.
So I looked on google for a word for what you call someone who likes to help others or who helps others in need and found this word.. Alturism.
Alturism - the belief in or practice of disinterested and selfless concern for the well-being of others.
The word disinterested kind of threw me...because I am most definitely not disinterested in the families I help but I think what it's really getting at is that you are helping with no motivation, no hope for personal gain.  And that is what I do, what I have a passion for and what I feel was one of the main gifts that come out of our experience with TTTS.
I have no desire today to 'toot my own horn'... so please don't think that this 'list'  I am about to post has that sort of purpose at all.  Rather the list below are some of things that I have been heavy on my heart, almost a burning desire to participate or accomplish, since the day after we learned Cole was gone.  I just felt like I wanted no one to walk this path as alone as I felt in those early moments and I wanted the doctors who cared for me to know that all they did for us was so very appreciated and we hoped that more and more could be done to save more and more babies.
I began seeking out ways to help and support before the boys were even born.  I was hospital bedrest and was so much in need of support myself.  I found myself drawn to two different message boards where I met people who had been through TTTS and were there to offer support.  The longer I stayed in those groups the more new families I met.  The more people I met, the more words of support, encouragement and hope seemed to come from my lips (well fingers actually)
Before my mat leave (of a year) was half over I had started a group for the support of families who had lost one twin.  It wasn't a very active group but was a place I felt very at home in.  As time went on I was added to a similar group for TTTS loss and eventually started my own group called TTTS Survivors with Guardian Angels.  I met so many moms who had just lost one of their babies and were just as lost as I had been.  Some lifelong friendships were born in those days.
I was a member of a few other TTTS support groups but I'll admit, many of them were so hard to be a member of in those early days.  One in particular was always full of hopeful stories, of stories so similar to mine except that both babies had easily survived.  It was difficult.  I would share my story but it always seemed to be pushed aside and almost refuted.  I felt, at times, that I wasn't very welcome there. But I stuck with it and, in fact, did make some connections to families who did bring 2 babies home from the hospital.  Sometimes my sharing, I think, was scary to them but others it was the opposite.  It was hopeful, it was honest. It wasn't sugar coasted or vague.  My first real connection with a mom carrying two living babies who may or may not make it came right after we celebrated our one year diagnosis and loss anniversary.  In the next few months I would become the voice of reality and hope for this mom.  I listened to her fears and I didn't keep telling her it would be alright, that both babies would be fine.  I was honest, that it was a 'crapshoot' at times but that no matter what happened she would survive this.  I also shared with her that although it was terribly hard to reach out at times I felt like it was something God wanted me to do, that it was the 'good' to come out of our loss, that it was something I could do to honour Cole.  This relationship between this mom, Tara, and I continued and grew.  God doesn't just let things happen 'because' and when she asked me if she could name her sicker baby after our Cole and then later delivered on my boys first birthday I knew this was God's hand.  

My support of families has grown and grown over the years as has my circle of TTTS friends.  I am frequently tagged in posts with questions about various areas of TTTS but moreover I am tagged for the words of encouragement I apparently share.  I never know how to take these compliments but I cherise each and every one of them.
Early in my journey I was supported by the wonderful people at The Fetal Health Foundation, specifically one of their board members, Tammy Smith and their founder, Lonnie Somers.  I have spoken of them both on my blog before but they truly inspired me to step out of my comfort zone.  I soon became someone who would seek out those who might also benefit from their support and eventually with the support of them both as well as a few moms who actually all had 2 survivors, I stepped very, very far out of my comfort zone and I set up a support group for those who were expecting identical twins.  Most of these moms will go on to deliver two babies with little to no complications and though it can be hard to run this group at times it feels just, well, right. 

Becoming closely connected to Fetal Health also motivated me to do something to help families financially.  I had dreams of having my own Canadian based foundation for support of families but soon realized that I was nowhere near ready to do anything like that.  Instead I directed my organizational skills and desire to help to the place that offered us the most hope when our diagnosis happened, Mt. Sinai Hospital.  Our first fundraiser happened in the spring of 2010 and was very successful.  Since then we have run 4 more fundraisers and raised well over $20 000 in total. Later this month we will travel to Toronto to meet with Dr. Ryan and present him with an official cheque for our efforts for 2013 and 2014. 

And it all just feels right.  Like this is what God wanted me to do with the passion that experiencing TTTS and losing Cole gave me.  A friend said just today, as she honours her son who passed away 4 years ago today, that someone said to her when it happened that right now, in the time of loss, you can’t imagine the good that God wants to come from the loss of your child but when you look back many years later you can see it with such clarity where God’s hand was, is and forever shall be when it comes to what your loss motivated you to do. 
What an awesome thing to come of such a heartbreaking experience.  A selfless concern for the well being of others… yes, that is indeed one of the gifts that Cole gave me!


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