A Time of Tears

I wrote this post on facebook a number of weeks ago and really thought I had posted it here.  I decided to back date it today to when I was wrote and share it anyway as I think it's good to reveal those moments in your journey where you feel like you are slipping backwards.  It shows the heights and depths of grief, that grief isn't linear and there are ups and downs, forward steps and backwards slides.  This was a backward slide....


Just finished me a heck of a good cry...and those who know me and my story know, after 6 years, I don't have sobbing fests anymore.
It came from reading an account of a parents final goodbye to their medically fragile child in a book called Life is a Gift. It was heart wrenching and the part that got me the most was when the mom talked about how much she appreciated that God gave her those final days, that time to prepare herself for the goodbye and her daughter for the hello to Jesus.

I remembered our goodbyes to Cole, the dreams we shared with him, the tears we wept, the regrets we had. This author talked about how much she knows she was blessed to have her time and how awful she feels for people like me. 

"I realize not everyone is granted the luxury of time when it comes to seeing a loved one die.  There are those who, with one horrific phone call, have to come to grips with the reality that life is gone.  There are those who never get a chance to say goodbye and all those other things we still want, and need, to say."

 And it just brought it all back. I want that time back, I want to say goodbye before his heart stops, I want to hold him as he takes his last breath, as the angels come for him. I want to tell him about Jesus and all he'll do growing up with Jesus, the angels and loved ones gone before him teaching him instead of me. 

I am raw, I am a mess and I am 12 days from their birthday... Which rarely affects me but I know God has something He needs me to come to terms with this year for their birthday.
I turned the page and saw this image and wept again... but slightly more hopeful this time...

 

I know that my son learned to walk with the Lord at his side.  I know that I will see him again.  I know he is in such a better place then this broke world.....but sometimes, in my weakest, most broken moments I just don't care, I just want him back with me.

Post Note:

I will share now, 15+ days later, that this year's birthday was a wonderful one because I allowed myself the freedom to feel all the emotions I could have.  I had some tears, I remembered a lot from that day that I think I had suppressed.   But the most interesting thing about this year, the part that I think God was preparing me for, was Cameron's growth and realizations.  He told me often that it was Cole's birthday too.  He told me that Cole got presents in heaven, the same ones he got here.  He assured me that Cole was happy with his cake and his party.  He also has begun talking about Cole like he is with him all the time.  He says there are 2 Coles in his class (one of his best buddies names is Cole) and that Cole loves going to school, loves Mrs. F and Mrs, N.  I am not sure a few months ago that my heart could have handled all of this from Cameron but today my heart sings because I know that my twin sons truly are connected, truly are living in each others space, truly are together forever. 

When Concern becomes Judging Interference

Recently I experienced a situation that has sent me through a huge gamut of emotions. It came at as 2014 came to a close and left me questioning the choices I've made over the last 6 years. 
In the end I knew that raising my kids the way we have is something I don't now, nor do I think I ever will, regret. I am proud of who each of them are because of the empathy and compassion our journey has taken us on. However it really has left me thinking about the things ‘well intended’ people say and day, why they do it and how to tell who really is sincere. 

Feeling judged is not something new to me.  I think I might be a bit more oversensitive to it as I have spent much of my life feeling like I don’t measure up in some way or another. 

But this was different.  Because this time someone was questioning an area of my life that I know, with 100% certainty, that I have grown from in a positive manner and was also an area I would never wish on anyone….and yet I know I am a better person because of it. 

I am guessing for some the unsaid subject here is obvious but for others maybe not so.  Without recapping the entire thing, I will say that some fairly harsh words were shared via text to me regarding how I ‘act’ around my children regarding the life and death of Cole.  Words like “ not healthy to be keep Cole 'alive´ with photos, charms” and “the constant talk of Cole and the 'twins' is not doing anyone any good” along with advice such as ‘grieve inwardly and keep him alive in your heart forever, but his memory needs to remain there” were just some of the many things that were said to me.  And maybe if it stopped there it might not have been so, well hurtful, but when things like saying one of our kids has a difficult 'prognosis' because Cole is actively discussed and idolized in our home (more info on this later) or worse yet, directly saying that when Cameron gets a little older that our ‘keeping Cole alive with photos and constant discussion’ may make him miss his twin brother and become deeply disturbed because he feels he is responsible for Cole not being alive and that he doesn't feel complete without him”….well that is just taking it beyond anything I could ever imagine that someone who is concerned would say and becomes entirely a judgement of how I have lived each and every day of my life for the last 6 years.  It’s beyond caring and borders on cruel (and that is toning it down from what was said and shows how little time that she spends with us or has talked to us about what happened as she doesn't realize that we could never paint a picture like that for Cameron since he was actually giving all he could to Cole, not taking anything from him and therefore didn't have any part in 'killing his twin brother')

But I really, truly wanted to give this person the benefit of the doubt.  I mean she really spends very little time with us so if the brief window she sees paints this picture then there must be a problem.  Except when I talked to those who do spend time with us often, who do know my children and have seen them ‘in action’, who have heard us talk about Cole with love, with hope, with peace and love and in a positive light…when those people told me that they have always admired how we include our children in all aspects of life and death, how we show our kids what life is real, crap happens and then life must go on and we must grow from our trials and that Cole’s little life mattered then I know that the ‘real’ people, the true friends and almost family they are ones painting the true picture of my life.

But again, I still wanted to give her the benefit of the doubt and I wanted desperately to understand why anyone would express things in such a way.  Was it out of concern and an offering of advice? Was it judging?

Through some research today into the definitions of ‘advising someone’ vs ‘judging someone’ it is my opinion that to be advised requires a search for answers, as in someone has asked for advice or indicated a desire to have advice shared, (whether or not we act upon it). Whereas judging someone is to have fault cast upon us, (whether or not we've earned it).

And since I didn't ask for advice nor indicate I felt I needed any but certainly had lots of fault for  'openly discussing and worshipping Cole in my home' at the sake of children's mental health then I guess this is a definite case of judging.

And the more and more I looked into this, the more reading I did and the more praying I did, the more I realized just how unfair it is to judge anyone.

Matthew 7:1-5 

“Judge not, that you be not judged. For with the judgment you pronounce you will be judged, and with the measure you use it will be measured to you. Why do you see the speck that is in your brother’s eye, but do not notice the log that is in your own eye? Or how can you say to your brother, ‘Let me take the speck out of your eye,’ when there is the log in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brother’s eye.

I know that the person that shared this with me felt she was sharing her concerns for my children’s well being but in the end she really was just passing judgement on what she felt was ‘a huge life blunder’.  I am guilty of this in her life too I am sure.  Thankfully I never chose to share this.  Was it because I didn’t feel I had the right or because I lacked the courage? I am not sure.  Mostly, I think, I realized that I had not walked a mile in her shoes, I had not lived in her home, spent enough time with her and her family etc to even feel I had a right to make a decision.  Obviously this sentiment wasn’t shared.

I did share this experience with many other twin loss mommies and almost every single one of them was outraged that anyone would feel inclined to say such things to someone who had lost a child.  Though I felt an immediate rush of support, just as I did when I shared it with friends here, I realized that I wasn’t alone, that many other people had experienced the same ignorant, ill founded ‘advice’….or judging. 

People don’t seem to understand that it isn’t their job to ‘interfere’ or ‘meddle’.  It isn’t their job to tell us how to grieve.  Most of all it isn’t their job to tell us how to live after loss.  I say it that way because I don’t feel like I am grieving, I don’t feel daily sadness, I don’t feel a huge sense of loss, don’t act depressed and don’t live with shrines and reminders of all we lost in any room in my home (there are no photos of Cole or even representations of Cole and Cameron together posted anywhere in my home)   The only job that the family and friends of those who’ve experienced loss have is to love them, unconditionally, genuinely and sincerely. 

1 Thessalonians 4:11

 And to aspire to live quietly, and to mind your own affairs, and to work with your hands, as we instructed you,

Now that is not to say that there aren’t times that intervention is necessary. I researched many psychology websites in preparation for this blog to see what ‘professionals’ had to say about what is healthy and what is not.  This is what I learned….

Crying, mourning, talking about loved ones, having mementos, doing things to honour them/remember them, celebrating them, expressing how you feel, taking as much time as it takes etc….those are all normal and healthy ways to grieve and to live after loss.

Ignoring, denying, never talking about it, handling it alone, rushing through it, becoming anxious or depressed, hoarding, engaging in risky behaviour (drinking and drugs are the obvious here but there are lots of others), becoming a victim or an abuser, becoming controlling, over or under eating etc…those are all very unhealthy ways to live after loss 

And since I was researching I decided to look into what the experts say for siblings…

Involve your children - find ways to let your children participate in things as much as possible, such as the planning of activities for a funeral or other memorial events, making up a photo board or a memory scrapbook.

Encourage memories - encourage ways to help them remember the who has died – and to celebrate their life. This can be an ongoing part of their lives, as they will always feel a bond or link with them – even after years. Their grief journey will slowly help them to realise their sibling has gone forever, but finding ways to remember them will help continue the special and precious relationship they have together. Studies show bereaved children are significantly helped in this way.

Now I am sure that there are some people who think that because Cole was never ‘known’ by his siblings that they have no memories to cherish, no relationship to hold on to.  Well unfortunately it doesn’t work that way.  My sons were so excited that their mommy was having twins. They are very aware that Cameron has a twin brother who looks exactly like him. It’s pretty hard to ignore what stares you in the face each day. 

I also came across this and I knew this is exactly what happens in the homes of everyone child who has lost a sibling….

Be aware that it is not unusual for a child’s grief to resurface, or even to surface for the first time, a considerable time after the death. This happens as they journey through

happened many months or years later. Be patient and understanding of this and answer them honestly. At any stage, if you feel concern about any particularly extreme reactions or behaviour changes you have noticed, contact your doctor, nurse or health centre, a counsellor, a social or community worker, a youth worker, or local family support agency.

And thankfully we are getting help for one of our kiddos who is struggling with a few issues…some relate to this loss and journey but some are very much genetic and learned behaviours.  But in case anyone wonders what I shared that started this whole thing in the first place…well sadly but understandably to some anyway, one of our sons has expressed that he feels that his baby brother died but that his sibling got a baby brother in Cameron.  This saddens me and yet I also know that he could very easily feel the same way if Cameron wasn’t a twin…when you have 3 living kiddos someone is bound to feel left out. 

Anyway, I think what this whole thing has taught me is that no one has a right to judge another person’s grief, loss or coping process.  If it becomes a situation that is life threatening to anyone then for sure, get involved, get help.  It has also taught me that, though I have never expressed my judgement of this person and how she has lived her life to her, I have to others and I have no right to do that.  I don’t even have a right to judge to just myself.  As natural as it is, it is neither helpful nor right and is something that God is not ok with.  The whole ‘people in glass houses shouldn’t throw stones’ comes to mind but even more so this comes to mind…

John 8:7

⁷ When they kept on questioning him, he straightened up and said to them, “Let any one of you who is without sin be the first to throw a stone at her.”

So what should you do if you are in a situation like this… LOVE, LOVE, LOVE!  Spend time with this person.  Don’t make a hasty decision or judgement. Talk to them, let them share their loved one with you and see how they really are doing. Listen to them and try to understand why they share their loved one the way they do and maybe even how they see how it affects their family.  You might be surprised.  Maybe they do need your help, maybe some sort of intervention, some type of counselling etc is needed.  But be cautious how you share your concerns and be very certain you know what you are talking about. A brief glimpse into their lives does not qualify you to make any observations or decisions.  And unless you are really close to the person and have the kind of relationship with them that entitles you to even have an opinion on their daily life…well shut the heck up!

Realize that you are not them, that you have not walked in their shoes (nor carried two babies in their womb). ..and even if you have had a similar experience, every person is different and will handle things differently.  Remember this is their family and they have a right to raise them the way they feel is best.  Who are you to decide what should or should not be said or done? You aren’t living in their home, you didn’t carry those children in your womb, you don’t see how they interact with each other every day. 

And above all, stop judging.  I know that not all who read this can appreciate that I turn to the bible for advice but this one speaks loud and clear to me..

 1 Corinthians 4:3-5

 I care very little if I am judged by you or by any human court; indeed, I do not even judge myself. ⁴ My conscience is clear, but that does not make me innocent. It is the Lord who judges me. ⁵ Therefore judge nothing before the appointed time; wait until the Lord comes. He will bring to light what is hidden in darkness and will expose the motives of the heart. At that time each will receive their praise from God.

God is the only one who can judge, who can pass judgement.  He knows the reason why things happen the way they do.  He knows what is in the hearts of everyone and will bring it to light, expose it.  For me, I truly believe God wants me to use Cole as a vessel to help others and that the faith I have found because of loss is to be shared.  I am not to hide Cole away in my heart but rather to share what losing him has taught me. He is to be a part of my family...because he is a part of my family. 

I can’t reiterate enough, no matter how concerned you may be, no matter what you feel should be done different, be careful and tread lightly when you do approach situations that could be so easily construed as judging…. Otherwise you may find yourself having forever ruined a relationship. 

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. 
http://lemconline.org/sermon-net

 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!

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 naïve 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!

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. 

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!