Monday, December 29, 2014

Gifts for Christmas Mourning...failure or not???

So I didn't do what I dreamed of.  I didn't blog my way through the holiday season.  I didn't share the things that have helped me get through this tough time of year every day or two like I planned.  I didn't share the ideas I had written down to share even.  I failed.... or did I?
You see that point of this project for me was to help me to focus on the positives, the joys, the hope, the things that are in my life because I experienced trials and sorrow.  I shared many, 13 in fact, things that I have gained an appreciation for since we lost Cole.  It wasn't the 20+ things I had planned but I realized in the days after Cole's angel day that I had made it through yet another year.  That I had grown yet another year more hopeful.  And that I, can, indeed, get through this season without sinking into a depressive state.  I can find joy in sorrow.  
I have two more things to share today and then will wrap up this project for yet another year. 
First of all, though this isn't in chronological order, I want to share the events of a week ago.  We traveled to Toronto, spent the day with an old friend, met a new friend and then saw a hero, our hero, and gave him a gift.  

If you can't make out the amount, our donation for the 2013&2014 combined fundraisers was.... $8686!!!!   That is mind boggling and inspiring.  I spent some time talking with Dr. Ryan about how we would like to use this money and we have some wonderful ideas.  He mentioned that support of other families is an area that they know is lacking and when I mentioned that I want to get more involved in this, that I would like to see a 'buddy' program, a program to partner together newly diagnosed families with those who have been through it, he told me that if I was willing to help with this he would take me up on it.  Actually what he said was 'you realize that I will take advantage of this right'.  
We love going back, even if it is hard at times, even if it does bring back memories and emotions.  My life was forever changed by this place and this man and I feel blessed to know them both.  Dr. Ryan is such a wonderful example of a people centered doctor and he doesn't forget any of 'his kids'...

The other thing I wanted to share actually happened the day before we went to Mt. Sinai.  
It's been on my heart for many months to share my testimony with others in a more official way.  I didn't think I was meant to get up and speak to the congregation as a whole but God kept putting it there, presenting opportunities.  So I casually mentioned that I was willing and our pastor quickly took me up on my offer...before I could change my mind.  
And as much as I resisted sharing my testimony with the congregation for a long time I was even more unsure I was ready to post it on facebook or here until today whenl I read a devotion that reminded me that our stories of brokenness give hope to others, helps others connect and not feel alone and most of all, because God has asked us to share how He works in our lives. 
Thanks for watching as much or as little of it as you can. The link can be found below but to access the video you need to click on Testimony Interviews, 4th Sunday of Advent on the right hand side of the screen and fast forward through to about 6 min 30 sec in.

 I am already thinking ahead to next year and what I want to do.  I think it's time this became a group that I run, a place not just for one season but for the whole year long.  A place to post what gets you through and where you post when you need help getting you through.  I have to think about it, how I want it to look, what I want it to be called, what I want to post there....but I think it's something I am meant to do.  
Thanks again for all your support!

Thursday, December 18, 2014

Gift of health

I seem to be losing my organization and time to write daily but I do have a few other things I want to share that I feel are gifts I gained or came to appreciate after going through our TTTS journey and loss.
Today I want to share my feelings on what I consider the gift of health, specifically healthy pregnancy. 
I will admit, I was pretty na├»ve when I came to pregnancy complications.  I had very easy pregnancies when I look back now though at the time there were things I thought were complications or problems and talked about them often.  With Zack I had signs of mild pre-eclampsia but it was easily dealt with and forced me only to take off work a few weeks earlier then I had planned.  My delivery was not ideal and has, in part, scarred me for life in regards to vaginal induced labours however Zack being born in distress with an apgar of 3 and needing assistance to begin to breath and 5 days in the NICU seems, well, trivial now.  Pregnancy with Brycen really was great.  I had no real troubles at all until delivery and an emergency c-section with the end result being a very healthy full term baby seems like really no big deal to me now. 
The twins opened my eyes from the moment of conception but certainly not as wide as they did later on. I really didn’t grasp how high risk my pregnancy was, really had no idea what to watch for, what the issues could be.  I didn’t have an appreciation either for what a miracle mono di twins are. I mean when you think about how identical twins (let alone triplets or higher level multiples) happen, that is nothing short of a miracle!!!  To think that inside my body a single sperm met a single egg and two perfect little beings, identical in every way, were formed is absolutely awesome.
I have met so many people who have had complicated singleton pregnancies too.  I don’t think we really can appreciate how amazing pregnancy and delivery is until you come face to face with serious complications. 
Today I celebrate healthy pregnancies and most especially celebrate my friend Jessica.  Today at 12:09 am Jessica delivered her mono di twin boys at over 6lbs each!  That is a miracle but the miracle is truly that this is her second identical twin pregnancy.  She was diagnosed with TTTS about a month before me and lost her sweet Tessa, like I did, the day after surgery.  In early July I learned she was expecting a surprise pregnancy…doubly surprise because it was identical twins yet again.  Later in the summer she was diagnosed with pre-stage 1 TTTS.  Basically one of her boys had a high fluid level, around 9 cm and the other had around 3 cm.  She was petrified that she was going to lose again.  Petrified of going through TTTS surgery again.  Thankfully these boys remained stable and actually got much more equal levels of fluid within a month or so and the remainder of the pregnancy contained very few ‘glitches’.  I am so glad that Jessica was able to experience a ‘healthy twin pregnancy’ and know that she, too, can fully appreciate the gift of health in pregnancy.

Welcome to the world little boys!

Tuesday, December 16, 2014

Gift of Motivation and Desire for change

I feel like today’s theme, today’s gift, is a great follow up to yesterday.  It’s a similar theme in that it speaks of the desire I was immediately drawn to in giving back to Mt. Sinai and for helping other families.  Today I am expanding on this in the area of helping others but more over in helping change the way things were being done in the area of proper care in twin pregnancy as well as care  and treatment for TTTS and in the way support was delivered in the TTTS ‘world’.  The current standard of many of these things was totally unacceptable to me in some areas and the more I learned about how things were done, the more people I met, the more stories I heard the more I wanted to be part of the change that needed to be happen.
One of the first things I began to see happening was the way that families who had suffered a loss were treated in some of the groups I belonged to.  Initially in my journey, likely for the first year or so, I didn’t notice any differences in the way I was treated in groups intended for the support of all TTTS families.  Maybe I wore blinders or maybe it just was a much smaller community.  I did feel that, although the support came mostly from others who had also suffered a loss and/or members of the TTTS community and not, almost ever, from the person who ran this one particular support group (which I did find odd since this person did suffer a loss and yet never responded to any of my emails after my first one and never did send the grief package that was promised) that I was welcome. 
But as I said, this began to change as time went on and likely it was because more and more survivors were being born and slightly less loss was happening.  The communities grew as facebook expanded and so we were seeing more and more stories of survivors.  I felt like an oddity, giving support to those going through TTTS, offering hope, when I didn’t have a perfect success story.  It seemed like there were very few loss families who did what I did.  Looking back now I think it wasn’t so much that loss families wanted to put it behind them but rather that it was too painful to relive time and time again as you offered support.  I guess that, in itself, is a gift…the ability to step outside your comfort zone, step past your grief, and offer hope.  I think I began to be more sensitive, more aware of how the words that some thought were full of hope could actually hurt people who were experiencing loss when my journey was about 2 years old.  Comments like ‘My babies were fighters’, ‘I prayed and God saved my babies’  and maybe one of the worst ‘My babies proved your statistic wrong’ (or something to that effect)etc began to eat at me.  My babies had both been fighters.  I had prayed.  Sometimes double survival just wasn’t what happened for everyone and that didn’t make anyone… the babies, the moms and dads, the people who prayed etc anymore or any less important.  I know that those with two survivors would argue this point with me, and since I have only my perspective to go on, it may be very valuable arguments but it is what I know. I know that some of them spoke of feeling ‘survivors guilt’ and felt loss parents made them feel bad for having survivors…so every side has a story to tell. 
I tried to share my feelings and was shut down constantly.  I was told that only positive stories should be shared in order to give hope.  If I posted pictures of anything related to my loss then were quickly hidden.  It became very apparent to me that a much more welcoming group was needed.  And so I started one and it amazes me daily.  It has 900+ members and is much more active than any other TTTS support group.  And it was a good thing I began this group because eventually my outspokenness combined with some things I was open about regarding how some support foundations were run got me banned from another group and I could no longer offer the support there that I felt drawn to do.
But that was ok because this group that I had begun was such a place of strength, of hope, of help, of honesty.  Other groups offered hopeful words and positive messages but they seemed to accept that all doctors who treated TTTS were created equally and I was quickly learning this was not true, not at all.  I began to research statistics for various surgeons and soon became very involved in a group that promoted, strongly, treatment by what was labelled as ‘Top Tier TTTS specialists’.  I helped moms, via Fetal Health, to get second opinions and even switched into the care of a better doctor.  I helped moms and dads, via Fetal Health, to pay for the travel costs to go and see these specialists.  And with this team of friends I had acquired worked (and still do) to educate the ‘expecting twins’ communities to learn what tests they needed, how often they needed to be seen, who they needed to see etc.  I learned about the falsehood of ‘Acute TTTS’ which was believed to be something that only happened at delivery and resulted in a baby with too much blood and one with too little…a red baby and a pale baby.  This diagnosis was believed to exist because these moms had never shown signs of fluid imbalances or size differences.  What I began learning was that this condition existed weeks prior to delivery and was called TAPS.  It didn’t have a lot of treatment available to it but monitoring and early delivery prevented losses to it. 
I soon became involved in campaigns to educate expectant moms about it and as well, believe it or not, doctors about how often those pregnant with mono di twins need to be seen and need to have ultrasounds…and what needs to be checked in those ultrasounds.  The status quo wasn’t acceptable.  Being seen every 4-6 weeks for ultrasounds, as I was, was not acceptable.  If the timing of my ultrasound had not happened as it did then both my babies would be dead.  I was just not being scanned enough to watch for TTTS or TAPS.  Being seen less after 24 weeks is not acceptable…. TTTS can happen right up until the cords are cut and it could care less how skilled or knowledgeable a doctor is.  Being told nothing can be done because your babies have an anterior placenta is unacceptable.  Doctors who say this infuriate me.  I had an anterior placenta and have discovered that, although it makes it slightly more complicated, skilled doctors have been doing laser on anterior placentas for 10-15 years.  Doctors who say the only thing that can be done now, or let’s try this for now, is an amnioreduction (where they drain off the excess fluid from the recipient) are unacceptable…and dangerous!  TTTS laser surgery can often not be performed after a reduction is done.

Change in support, change in awareness, change in education, change in understanding and most of all, change in empathy levels NEEDED to happen and the desire to see it happen, the motivation to make it happen, is an amazing gift to be given. I am so very thankful to have been blessed with this gift and even more blessed with the friends, foundations and professionals who can help me to gain the knowledge and confidence to see it to fruition. 

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!