Broken by Mourning to Find Hope Again

Yesterday a friend shared this experience and her epiphany from it and it resonated with me…

GRACEFULLY BROKEN!
I was in Dollarama last night and there was a lady and two kids behind me in the LONG line. One was a big kid, one was a toddler. The bigger one had a pack of glow sticks and the baby was screaming for them so the Mom opened the pack and gave him one, which stopped his tears. He walked around with it smiling, but then the bigger boy took it and the baby started screaming again. Just as the Mom was about to fuss at the older child, he bent the glow sticks and handed it back to the baby. As we walked outside at the same time, the baby noticed that the stick was now glowing and his brother said "I had to break it so you could get the full effect from it." I almost ran because l could hear God saying to me, "I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose." That little baby was happy just swinging that "unbroken" glow stick around in the air because he didn't understand what it was created to do which was "GLOW". There are some people who will be content just "being" but some of us that God has chosen, we have to be "BROKEN". We have to get sick. We have to lose a job. We go through a divorce.  We have to go through so call friends talking behind our backs, people who try to break your character  all while smiling in your face, but GOD! When we have to bury our siblings, parents, best friend, or our child because, in those moments of desperation, God is breaking us but when the breaking is done, then we will be able to see the reason for which we were created.. so when you see us glowing just know that we have been broken but healed by his Grace and Mercy!!!

Sometimes we are totally happy on our journey through life, totally unaware that we aren’t living our best life and that there’s so much more we could be doing. We’re happy carrying around our unbroken glow stick and think we’ve got this perfect life, that we’re right where we need to be.  And then our life’s rug gets ripped out from under us.  We lose a loved one. We or someone close to us gets seriously ill.  We lose a job.  We get divorced.  Our house burns down.  We get in a car accident…. The list could go on and on.  Suddenly we are just broken beyond anything we can comprehend and we don’t know how to put ourselves back together.  We can try on our own to get through it, and those without faith might appear to have done that.  But my feeling is that it’s God who puts us back on the right track.  As my friend said, you can almost hear God saying, ‘I had to break you to show you why I created you. You had to go through it so you could fulfill your purpose’.  It’s awful and it hurts but she’s right.  When the breaking is done, then we will be able to see the reason we were created.  When the breaking is done, we can see the purpose that was to come from it, the purpose God has for us. 

Today I was struck again but this same idea as I read one of my devotions and amazed at God’s impeccable timing.

Isaiah lists powerful ways that the Lord will bring hope and healing to us. Which have you personally experienced? 

This was part of the scripture they referenced....

He has sent me to tell those who mourn that the time of the Lord ’s favor has come, and with it, the day of God’s anger against their enemies. To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory.
Isaiah 61:2‭-‬3 NLT

In this week of memories, of reflection on the time where my mourning began, where I began to learn about the hardest kind of grief and from there learned about the best kind of hope... yes, definitely God's impeccable timing for this devotion. There were other powerful ways that Isaiah listed as ways God would bring healing and hope but there is no way more powerful than what I’ve learned through mourning, through loss, through the brokenness of losing a child.  For all who mourn, he will give a crown of ashes, a joyous blessing, praise instead of despair.  I had to be broken to find this hope but wow what a hope it has been and continues to be. 

Today marks the anniversary of my final day of innocence, of naivety, of carrying my unbroken glow stick and not knowing that I could not get the full effect of my life and my purpose, I could not find my hope, without being broken and without knowing loss, grief and mourning. 

Today I celebrate my glow stick that shines bright, broken, with the full effect!

Awareness 365 days of the year

So today is World TTTS Awareness Day. It was started by one individual who walked through TTTS and felt a very strong desire to help others through this terrible disease. I believe, but I may not be correct, that it is the birthday of her twins... One who celebrates here on Earth and one who celebrates in heaven.

And I respect this day, I respect the month of awareness that she has created and the desire for awareness to be spread.

Personally, however, I won't reserve my spreading of awareness to one day or even one month. This disease affects lives every single day. There's much that has been learned, especially in the last five years, about this disease but there's still much to be learned. While the doctor’s who treat it are often actively researching, attempting new procedures, working together to improve surgical methods and diagnostic testing, it’s the parents who’ve struggled through it, who’ve worried, cried and mourned, who can push for things to improve with a passion no doctor can even really, truly, understand. And it's those parents who can impact the lives of the yet undiagnosed, the future babies. Those parents are passionate and they're part of communities where mono di parents hang out. They run support groups online with parents who just found out that they are expecting mono di twins. Those parents are sponges, wanting to know everything they need to know, wanting to be the best advocates they can for their unborn babies. And that's where a parent who has been down this path can really make an impact but that can only happen if they're actively spreading awareness all year round. Some of my closest online friends, and I guess myself included, are incredibly passionate about learning what we can and sharing what we know. We reach out to doctors to learn information and in turn share that information with the rest of the TTTS community and many of us even share bits of information that we've learned with the doctors we are close with who were part of our own team.

We share the research, we share statistics on certain doctors and certain treatment centres so that those who are newly diagnosed are going to the right place, the best place, to help save their babies. We are passionate about saving babies and that passion exists 365 days of the year.

But TTTS Awareness Day or month and even those 365 days of the year that many of us are passionate about, cannot be just about awareness for those newly diagnosed or those to be diagnosed in the future. It also has to be about creating an awareness that support is available. It has to be about creating an awareness that you are not alone. There must be an awareness shared that you will get through this and that these new online friends will walk this path beside you.





So make those 365 days count. Walk through each day beside someone who needs your help. Walk each day in honour of your children. Take the steps that maybe they didn’t get to take through this amazing way of honouring them.

That is what awareness encompasses to me.

If you would like to make a difference in TTTS support in Canada or in fetal interventions across our entire country...or just want to offer my family your support, love and help us honour our sweet heavenly son, please consider donating to our annual event. We will be traveling to Toronto on Cole's heavenly birthday, Friday, to make a presentation to Dr Ryan and we'd love to include YOU in this presentation.

https://mountsinaihospitalfdn.akaraisin.com/PersonalPages/Participant/Home.aspx?seid=6777&pid=2985485&mid=66#.XYKZB2mRqGM.facebook

The Unintentionally Oblivious...will they ever get it?

So, as some of you may know, December is TTTS Awareness month. It's always a time when some TTTS groups on social media seem to be very active, heavily bombarded with messages and photos, just a very active presence of many members.

Half of the groups I belong to are strictly for those who have lost one or both of their twins. The other two groups are for general support.

This week in a group that I'm a member of, though not a group I help with or am very active or involved in, there seems to be a huge bombardment a photos of survivors. And I get it. I get that in this month of awareness we want to celebrate those who successfully fought this battle and won.

But looking at those photos bothered me. Not that it bothers me to see photos of survivors, not at all. It bothered me that in this group that should be there to support everyone, there was this huge presence of healthy living children and a large gap of stories and photo tributes about/for babies who did not win their fight. And so I posted this photo that I created and this post.

This is a photo tribute to my boys Cameron and Cole. Cameron blesses us with his energy, zest for life and deep emotions daily. Cole watches over us from above and is always with us, guiding us, motivating and inspiring us.

I've been thinking about what to post in this group all day. It's been sitting heavy in my heart because there are members of this group who have no photos to share, have no survivors to celebrate. It's the side of TTTS that all too often is overlooked and perhaps even kept from the newly diagnosed and that's such an injustice, so unhelpful in my opinion.

We need to celebrate that we made it through this hellish journey and found joy again, found hope again, made forever friends, found a side of ourselves we didn't know we had. We need to celebrate that we survived!

All of us...no matter what our outcome is and if we have photos to share or not.

    And it was well-received, with some supportive comments. I had really hoped that it would make people think about posting more photo and encourage more people who lost to post something.

But the photos continued to fill this group and very few of them were photos of just one survivor. They just seemed so oblivious of the hurt that these photos can cause, of the divide they create between those who 'won' and those who 'lost'.

And so I posted this post

Today I'd like to encourage those with a TTTS angel, a child who lost their fight to this dreadful disorder, to please share a tribute photo to them. They deserve to be honored and celebrated too!

with these pictures 

         

in hopes that other families who had lost one of their or both of their babes would share and celebrate the journey that they had taken. It received about half of the likes and reactions that some of the other posts received and no one followed suit.

Now don't get me wrong, there were a few posts from people who had one survivor but no one seemed to want to post any sort of tribute to their baby in heaven. And it really made me think about it. Why are we reluctant to share this? Why are so many people so eager to share photos of their healthy living children, so eager that the posts that have to do with loss seem to be pushed further and further down the wall?

And I think I figured out something.  For so many who have suffered a loss feeling welcome can be hard.  Reminders of what could have been, what should have been, are really hard to handle at times.  When you don't feel comfortable or even welcome then you tend to retreat.  And so what I realized about this group and a few others I've been in over the years....there aren't very many loss families there. They left. They don't feel welcome, supported, like they have a purpose. 

And that is not okay. We need those stories, we need that reality. We need to share all the outcomes so that people are prepared for what can happen.

And so I will continue to do what I do. I will share both of my children and I will share our story over and over and over again. Hopefully someone who reads it will feel a lot less alone. And hopefully by sharing my story and being present in the groups where 'the oblivious' are present they will start to think about what they can do to help everyone.  

I Am Who I Am

I am who I am because I've been where I've been. 

Jodie Tummers 2019

Think about that for a few minutes. Just ponder it. It's very true for all of our lives, but I think it's especially true for those that have been through a crisis and taken what they've learned from that and used it for growth, for the betterment of those who take a similar walk, to create a legacy or tribute to the situation or person that was most closely involved in the crisis that you had.

A backstory on this quote of mine. Earlier this week I approached my supervisor to let her know that I will not be at work next Friday. For those who haven't looked at the calendar or don't know me very well, next Friday marks, as I told my supervisor, the 11th anniversary of what I call ‘the worst day of my life’. It's not a day that I can be at work. Especially not in the location where I work, where there are many, many sets of twins.

In my discussion with her, we talked about where I reside in my journey, how hard this day still is. While the conversation could have been taken two different ways, I've chosen to take it as a curiosity rather than a judgement on how you cope in the years that follow the anniversary of a very traumatic day.

I told her that I really felt that most of the 364 other days of the year I do really well with my grief, with my emotions about this event, this tragic loss. But this one day, this particular day, it's never, ever going to be okay. It's a lot better than it used to be, it's a day I've turned into something honouring,  sort of a celebration, a day to honour Cole. But it's still a difficult day and it's a day I need to be surrounded by my family. It's a day the tears come easily, it's a day of memories and, still, a day of heartache. 

But the rest of 364 days.... They're pretty amazing to be honest. And I feel really good about what I've done to honour Cole’s precious little life. I've taken the sourest of lemons and turned them into the sweetest of lemonade as per a quote from This is Us.

So as I said to her, I am who I am because I've been where I've been. And that is true.

If I had not taken this journey, if I had never gotten pregnant with mono di twins, I wouldn't be who I am today.

If I had never had TTTS, I wouldn't be who I am today.

If I had not suffered such a devastating loss of my dear sweet Cole, I would not be who I am today.

If I had not experienced many, many weeks away from the rest of my family, I would not be who I am today.

If I had not met hundreds of other parents walking path, I would not be who I am today.

If I had not learned what I could about this disorder, I would not be who I am today.

If I had not taken what I learned and used it to help other people, I would not be who I am today.




I am who I am because I've been where I've been.

Where Does Your Joy Come From

A few days ago some online friends and I were chatting as we tried to work through a problem in a group we're in. The topic of joy came up and it lead to a conversation online and then with my husband about how joy is connected to the trials of life and how our mindset can determine if we become selfless or selfish in the aftermath of a crisis.

We've all been there at some point or another...down a path of life that isn't what we expected, definitely isn't what we wanted and where retreating, rerouting or jumping off seems to be a far preferred path to take than the one in front of us. But we trudge through it and make our way to the other side. We sigh a deep sigh of relief to be through it and then we look around us and things look different. We look in the mirror and sometimes we don't recognize the person staring back at us. Many people feel unsure of how to go forward and emotionally they are struggling, emotionally there's a whole new path to take and it's not one they navigate well.

For those who came out of the crisis in what people would identify as having won, having beat the odds against them, the default emotion is most often erring on the side of positivity. They feel successful, proud, victorious, hopeful and filled with joy. Sometimes those emotions are wrapped in an awareness of gratitude and of graciousness, with a humble respect for those who took the same journey but didn't have the same positive outcome.

And sometimes that graciousness and humble attitude is missing.

And that's where my friends and I met in our chat group...at the point of realizing that sometimes people are so filled with joy at their own success that they develop a mentality that pushes the attitude, in the words of one of my friends (who does have a ‘success’ story), "Because I did it, you can too!" or "Everyone needs to be happy for me and my outcome because I am." It's a form of unaware selfishness. They do not look outside themselves, outside their bubble of success. They associate most with those who had a similar journey and similar outcome and are often highly offended by those who challenge the words they chose to use or the motives behind their presence or participation.

They can’t see that their attitude is so hurtful to those who long for this to be their story. They can’t see that posting photos of their surviving twins in a group where every outcome imaginable exists triggers a sadness in those who wish that their story had ended differently. And when this is pointed out to them, when they are asked to edit their post, always with an explanation of our desire to keep our group welcoming and comfortable for everyone, they will remove their post or even use words like ‘you are stealing my joy’, ‘you’ve made me feel guilty and uncomfortable’. To a loss mom who feels uncomfortable so much of the time this is pretty offensive.

It’s made me think of the reasons I have continued to be part of groups where so many triggers can be present. Triggers like photos but also success stories...stories of doctors who monitored their patients every 2 weeks and caught TTTS in time, stories of more serious situations at the time of diagnosis that still resulted in 2 survivors and sometimes even just stories from the mono di twin group that I help run that involve 2 babies being born healthy at full term. Why am I there? How much of my ‘joy’ is stolen from me by seeing these things?

And the answer is….NONE! None of my joy is stolen from me by these experiences because I have chosen to take my journey and use it to help others which in turn fills me with joy. Something I've always wanted to be with my presence in all the twin groups I am connected to is a 'proof that you can find hope in all situations', that you can find joy no matter what your outcome is. I’ve always wanted those newly diagnosed to see that no matter what happens, you will make it through this and you will find people who can relate to you and your journey, that you aren’t alone. I’ve always wanted those who don’t have the outcome they longed for to know that there are people out there who understand the heartbreak and have made it throught the darkest of times. Doing this, providing hope for others, gives me joy. Sharing Cole and Cam’s story with others gives me joy. Fundraising in Cole’s memory gives me great joy. Spreading awareness and helping others to understand the risks, empowering them through this awareness to seek the best care they can for their unborn babies gives me joy. Knowing that Cole’s journey, ultimately the outcome of our TTTS journey and essentially Cole’s loss of life was not in vain.

Last week I spoke to one of my favourite parents at my work and shared the line ‘either it makes you bitter or it makes you better….and I’ve chosen to have it make me better’. This can apply to so many situations in life but most especially to unexpected loss. I could have chosen, like others I’ve sadly encountered over the years, to live in sadness, regret, anger and hopelessness. Or I could choose to do what I’ve done and find a way to make the best, the most hopeful, the most joyful outcomes come out of our situation and in that, to find peace.

Something else that I really feel I must share is that, in my opinion, being part of a support group after the 'crisis' has passed and you aren't in 'need' of support has to include a mindset like what I mentioned above, or what is the point of you being there. I don’t mean to say that everyone who isn’t in the throws of a diagnosis or the early stages of coping after delivery or loss should not be present in a support group. By no means. There is no linear format to trauma or loss and let’s face it, no matter what your outcome is, a crisis like this is trauma and loss producing in some way. But a support group should not be there to build you up AFTER you’ve successfully overcome the crisis. To me that is a form of selfishness...perhaps unaware selfishness, but selfishness all the same.



So my message to anyone still reading this is to make life better, not bitter. To take all that life offers you and find a way, somehow, to find your hope again. Make your joy come from all you can do to help another person walk a path you once took. And in that the journey becomes so very worth it!

Living in the Shadow of Loss

Have you ever thought that you are living in someone's shadow? Have you ever thought that you carry more baggage then you should have to, then is really yours to carry or wondered at the heaviness that seems to be a part of your heart and aren't even sure how it got there?  Have you ever looked at someone else oh, maybe even your own children, and wondered how they are going to make out with the hand life has dealt them? I ask these questions because in the last few years I've had a few encounters with friends who've lost a child and, in watching their grief journey, in remembering our own grief journey, I often wonder about the siblings, especially the surviving twin sibling, and how our grief manifests in them.  



Very early in my loss journey, probably within the first 6 months or so, a relative of mine contacted me with concerns about how much I talked about Cole. She spoke from the heart because she grew up under the shadow of loss herself. Her sister was killed in a car accident and life in their house was never the same again. Not surprising, how could life ever be the same after you lose a child or sibling? But her concern wasn't really about life not being the same but rather about my own children growing up feeling like they were being compared to their sibling that had passed away. It's sort of that comparison that can leave the person feeling like they're just not enough.

At the time I was a little bit hurt and yet really appreciated the wake-up call. It made me reevaluate how I presented things to my kids and it made me more cautious about how Cameron perceived his twinship.

I think I've done a good job but it's also been a 10-year project in the making. We've always been very cautious and how we talked about TTTS to Cameron and and how Cole’s illness, the cause of his death, is presented to him. For those of you who don't really understand what happened in TTTS, in mono di twins the babies share a placenta. As that placenta was formed, vessels grew across it connecting one baby to the other. In about 80% of the cases this is not a problem, although the babies are connected, the blood stays circulating within each baby side of the placenta and there are no issues. But in 20% of the cases something happens and the blood begins to shunt from one baby, the donor, across the placenta and into the other baby, the recipient.  And that's what happened with my boys. Cameron was giving up blood and it was travelling across the placenta into Cole. It made his heart work harder, which made him urinate more, which increased the fluid that he was swimming in, which made his heart work even harder. I guess just a vicious circle. If we presented that to Cameron, in the wrong way, he could have grown up believing that he caused his brother's death but giving him his blood.  Or if he'd been the recipient, the Cole in the situation, he could have grown up believing that he took so much from his brother that he caused his twin's death. So we've always been really cautious on how we presented it.

But that's not the only reason we were cautious. We also have never wanted Cameron to grow up thinking he wasn't enough. We've always wanted him to understand that he was his own person, and although he is a twin, he is not half, not a portion, not an incomplete part. He is an individual and he is awesome. And while we wish his brother was here, that doesn't take away from who he is and what he has become. We celebrate how awesome it is that he has a twin brother, that God chose them to grow together right from the start. But we stop it there. We separate it at that point and choose to celebrate the amazing gifts God gave each of our kids and make sure they know how proud we are of them. We let them know they are wanted, loved, cherished and valued individuals and members of our family. We want them to know that they are enough.

All children need to grow up feeling this way but I think it’s especially important when they are growing up after the trauma of losing a sibling...even if they were too young to remember. I am not saying that they should not grow up knowing about their sibling. The exact opposite actually. They need to know about them, to hear about them and feel the love you have for them so they can connect with them too. But they also need a healthy balance between life and death, between gentle loving reminders and constant connections. A balance between some tributes, photos and mementos and visual reminders in every room. A balance between their name spoken occasionally and their name being part of every conversation. A balance between celebrating the milestones they are achieving and grieving over the fact that their twin isn't their to celebrate this milestone.

The biggest reason for this, in my opinion, is because they need to feel that they are important, that they are enough, that you are delighted in them. They continued to live and build memories. Their life didn’t stop. They need to see that celebrated. They need to feel that celebration with all the positive, life giving energy you’ve got. Their photo wall gets to keep growing. Their shelf of things that remind you of them keeps expanding. They keep getting bigger and that means the shadow they cast should also keep getting bigger. They shouldn’t be growing up under a shadow and they won’t be if they are celebrated for the joyful blessing that they are.  Let their milestones and achievements be theirs, let them have their birthdays, their first steps, their first haircuts, their first day of school or sports be theirs and theirs alone.  In your heart you can weep for what should have been but our surviving twins and our surviving children need to feel celebrated without any shadows over them!

Who You'd Be Today...Who I'd be Today

Today is the 13th birthday of an online friend's twin boys.  Only instead of celebrating with 'sweaty, fighting, confident, scrawny teenage boys' she went to the cemetery.  Instead of their whole family celebrating these boys becoming teenagers together, her ex-husband went to the cemetery himself and she and a friend are taking her girls.  

She wrote about how much life changed because of the hand they were dealt 13 years ago today.  She wrote about about how much things changed for the worst 13 years ago today.  She talked about how much things have changed and how much courage she has now after living life after loss.  And she wrote about how different she is now, how life before and life after are just so different.  

And as I read her post this song popped into my head.....

I've thought of this song often over the years because I do often wonder 'who' Cole would be today. We all do.  We talk about it sometimes.  Would he be talkative, loud and energetic like Cam or would he be more reserved.  Would he live life as big as Cam or would he take a back seat to Cam's antics and sometimes dramatics?  Maybe he'd be a deep thinker and feeler like Brycen.  Maybe he'd have a rebellious streak like Zack.  Who knows?  I could spend a life time feeling wishful and wanting to know....but I turned most of that area of my brain off years ago.  It just hurts too much to think of that sometimes but more than that, it doesn't do justice to the boy that Cole did become...the one who inspires passion, dedication, caring and a supportive nature in the family he left behind.  

But that doesn't mean that songs like this don't cut deep.... read the words and think about someone you've lost far too early... 

Who You'd be Today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy

It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today

Today, today, today
Today, today, today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday

Someday, someday

It's impossible not to feel some pain.  

But now I want you read those lyrics again and think of yourself, the person who loved and forever lost a part of their heart when their loved one left them far too soon.  

Do you wonder who you'd be today if it hadn't happened? 

I know I do.  Often. in difficult moments, I wish the old me could come back.  The old me who was more innocent, less passionate, who wore her heart on her sleeve less.  The old me who thought the friendships she valued would be there for life, the girl who thought she'd experienced the worst life had to offer when she lost her boyfriend to cancer, said goodbye to a special friend who died in a car accident, helped a special family she worked for say goodbye to their very special little boy.  The old me who didn't get triggered by a variety of images, memories, smells, sounds and words.  

I wonder who I'd be today more often than I want to admit.  Sometimes it's with a sad heart when I think of all that got lost on that fateful day, of the girl who got left behind.  I wonder about friendships that didn't survive the loss. Of a marriage that has never been the same.  Of goals and plans that never got realized when priorities suddenly changed.

But then I also wonder if I would be who I am today, the person I am actually sometimes proud of, if my heart hadn't shattered that day.  If I hadn't had to pick up the pieces of that broken heart and try to figure out how they could fit back together with a big piece missing, would I have appreciated my kids as much as I do and valued their uniqueness?  Would I have found a way to put the feelings that come with loss on paper and been able to offer them as a comfort to others?  Would I have a passion for helping others, would I care so much, invest so much of myself in being there for people I've never even met?  I wonder if I would have ever gained the knowledge base about babies, pregnancy, complications, procedures, ultrasounds, doctors and clinics etc

Death tore the pages of life as I knew it away and, while I sometimes miss who I was, I love who I am.  I live for the hope that salvation gives me, the knowledge that I'll see my son again in heaven.  Maybe the old me will be found there too and then I'll be fully complete and whole. But since I don't know someday will be I will, instead, live for today and make the very best of what I have been given.