Saturday, December 16, 2017

Advent Challenge Day 16 - Strength

Write about a time you were told you were strong


I tried to go back and find times where I blogged about this before...because I know I have. Unfortunately I couldn’t find a specific blog post on this...which I guess means I was supposed to write a new one.

The funny thing about this topic is that I can’t pick just one time that this has been said to me. It gets said over and over again and that’s been happening since before the boys were born and continues to today. ‘Your strength is inspiring/amazing.’ ‘You are so courageous.’ ‘I admire your strength and know I’d never be as strong as you’. It happens all the time and all the time I want to say they are wrong, that I’m not any stronger than anyone else would be.

One of my blog posts from a long time ago where I mentioned strength was written from a bit of a different perspective than I'm at now but it's interesting. I mentioned that people were telling me how strong I was, how they didn't know how I was doing it or how they couldn't have done it themselves. At the time I wrote something along the lines of what other choice did I have? What was I going to do different, it was completely out of my hands. I wrote that then was that I would rather have not been strong and had Cole here then to be strong and live life without him. And while I don't feel the same way or perhaps rather I look at it in a different way, there is a part of me that does still wish I didn't have to have been so strong. It was a strength that was forced on me I guess. I didn't choose it, and I didn't want it, but it's mine to own. There are days I don't feel strong at all. This week I definitely didn't feel like I had much strength. There were many moments where it was all I could do to keep tears back. But maybe some people would think that that is showing strength. Being able to go on despite the emotions that are racking your heart could be considered showing strength. And once again I say, what other choice do I have? I can't stop living. I can't stop being a mom, a wife, an employee or a friend. I might need breaks from that to help me get through, I took one on Wednesday. I knew I didn't have the strength to be an employee that day, that mentally I would be checked out, and so I took the day off. I got up early so I could take a break from being ‘strong mommy’ and cried my heart out in the wee hours of the morning while my family slept. I offered no supportive words to any friends or within any of the groups I belong to on Facebook. But even with those breaks in mind many would say I showed strength is just doing what we did that day. Returning to Mt. Sinai and seeing Dr. Ryan isn’t easy and yet it’s a way to bring joy to that day.
In recent years I have had many within the TTTS community tell me they admire my strength, that they admire what I do to help others. Some friends in the loss community tell me I am so strong for continuing to be present in the twin groups as that's not a place they can go, it's not a place they feel comfortable. I've never really thought a lot about it, a lot about it being a sign of strength. It's again, just what I do. I feel drawn to being there and helping; offering information about proper pregnancy care to those pregnant, offering support to the newly diagnosed, providing ears to listen and a shoulder to cry on to those who have suffered a loss.
 

And I could say I don't know where that strength comes from but that's not entirely true. That strength comes from a desire to make this journey have a purpose. Within a very short time of losing Cole both Geoff and I knew that we wanted help other people through this difficult journey. We wanted others to not experience what we were going through whether that be the loss itself, the feelings of being alone and unsupported or just the general uncertainty of it all. I've always felt very strongly that Cole's life had to mean more than his time alive inside of me. I wanted him to make an impact on the world just like his brothers would. And so I guess my strength comes from him and I love that he's giving that to me.

 

Friday, December 15, 2017

Advent Challenge 2017 Day 15 - Nourish



Write about what it means to nourish your own soul or the soul of someone else


I wasn’t sure what to write for this topic. I mean this time of year we certainly nourish our bellies more than we need to but what does it mean to nourish one’s soul? What does “Nourish” really mean? Synonyms for nourish include: feed, provide for, sustain, maintain, enhance, cherish, nurture, foster, harbor, etc. So ignoring the ‘feed’ part, what can I do to provide for, sustain, maintain, cherish, nurture, etc myself or another person.

I pondered this for a bit, pondered what do I do that provides for my soul, for my heart? Likewise what do I do that helps to sustain and maintain it, to cherish and nurture it? And do I do this for anyone else?
In this season of memories, of emotions, of times of struggle with both of those, what do I do to nurture my soul? Well obviously I write. And what do I write about, what is the general reason I write or the focus of my writing? Well that’s simple...the reason is to keep myself focused on the positives while exploring some of those emotions. The focus...often it’s what I’ve learned from this journey and where the journey has taken me.




I open my heart all the time...and often hear from friends how much they appreciate my honesty. I also share from the heart about many different things but most especially about the journey that we took with our twins. Sometimes that sharing can get kind of messy and emotional but I can honestly say that I have never regretted opening my heart how about my boys to other people. Being able to share how my life has changed, being able to share all that we've done because we knew and loved Cole definitely nourishes my soul. But it's not just sharing that nourishes is it but the actual actions themselves. Doing what we do for our fundraiser is a definite part of that. Another large part is being involved in the support groups that I am on Facebook, messaging or texting the moms I’ve connected with from far and wide and allowing them to have a place to talk, to vent, to grief. Being there for others is definitely nourishing to my soul. And that makes me think about how I nourish others. Perhaps that is what I can do to nourish other people’s souls... just keep sharing. Pretty great that you can nourish yourself and others all at the same time and all by just opening your heart, being honest, being supportive, and just loving on others.

Thursday, December 14, 2017

Advent Challenge Day 14 - Joy


Write about a joyful moment in your life


As I sit here pondering joyful moments I am unsure I can write about just one. I mean no one has only one joyful moment in their lives I hope. I am not sure I can come up with ‘the most joyful’ moment either.

Instead I think I am going to post of photo of what brings me the greatest joy….




It’s an older photo but they don’t pause long enough for group photos much anymore! These three are full of joy...at times anyway. But whether they are or aren’t the joy that they bring me can’t be measured. Those older two were what kept joy in my life in the days after we found out Cole was gone. Even in the moments where Brycen said ‘you no cry today mom?’ and Zack asked me for the 100th time if I was ok I found joy in them and the fact that they were there for me. And Cameron….well he spreads joy no matter where he goes.






As a follow up to yesterday I want to share some photos of our day and what we did to honour our sweet boy….because it gives me great joy to do that too!

        
Each year we hold a fundraiser to raise funds for Dr. Ryan's program at Mt. Sinai.  Our event was a great success this year and we raised $4368!!!! It was a joy to spend Cole's day back where it all began with the man who was so instrumental in our journey.









Cameron wanted to give Dr.  Ryan a gift this year.  His way to say thanks and to spread joy as well!

   


Wednesday, December 13, 2017

Nine years....

I just wanted to add another short post today as the one I posted earlier was actually written earlier and then tweeked and posted today.  So as honest as it was, as raw with heartache, it wasn't actually today's heartbreak. 
Like every year, today I woke early to get as much of the rawness of this day out of the way before I put my mommy hat on, wake the boys and prepare to go to Toronto for our annual visit.  I read through what I had shared last year, the part of my 'story' from December 13, 2008 and...I wept and I wept and I crying again as I type this.  Each year I think why does this have to be so hard.  Why does it have to hurt so much.  And then I shake my head at the ridiculousness of that.  It's never, ever going to be easy to get through this day. A part of heart was torn apart that day 9 years ago and it hurts, like hell!  I hate that it has to hurt and I hate even more that it has a reason to, that I had to lose my child and cause that wound. 
And although what I am about to write isn't necessarily any less emotional and I know I'll sob while typing it, my hope for myself is that sharing words to Cole of all he means to me will help to comfort my heart. 

My dearest Cole you are so loved.  You are so treasured.  And you are so missed.  Sometimes I marvel at how much I can miss what I never had.  I didn't build memories of you hear in my arms, only in my womb.  I didn't get kisses and hugs but I did get crazy kicks and saw you so many times at those ultrasounds.  How can I miss someone I didn't experience life with???  Well first of all I miss what I didn't get.  I miss that we never got to experience life with you, to watch you grow, to hear your laugh.  But I also know that we lost only your body and your physical presence from our lives.  Your spirit is with us and always has been.  You've inspired me to become someone I never imagined I could.  To do things I never thought possible.  You've shaped me and stretched me.  And that makes me miss you more....because I wish I could have experienced all of that with you here and not because you weren't. 

But the reality is that I'll never know if that could have happened if you were here and in my heart of hearts I think I know it wouldn't have. 

You, my sweet son, are my inspiration and you will never stop changing the world...through me, through your dad, through your older brothers and especially through your twin brother.  You shine brighter than any star.  Your love radiates through this family.  You've impacted the lives of people all over the world. 

Cole Edward Ryan Tummers you are so missed.  You are so loved.  You are so treasured.  And you are so much a part of this family and this world.  I will spend the rest of my life wishing I didn't have this day to honour you and I know it will never be an easy day.  I also know that my tears aren't just tears of sadness and heartbreak but are tears of joy for the impact your life has had on the world. 

Yesterday, today, tomorrow and forever you are loved. 

Advent Challenge Day 13 - Reclaim

Write about something you wish to reclaim

I didn’t pick this.  This was the original theme for this day by the person who made this challenge. This is the theme set for the anniversary of the worst of day of life.  I was going to change it.  I mean really, why wouldn’t I want to write about memories, moments, or even love or peace today?  Why not write with a focus on the positives, something that’s deep and profound that I’ve learned from this day? The answer is simple….because God wants me to explore something (some things??) I need to reclaim on this day.  
If I could reclaim anything in the world, most especially from this day 9 years ago, the easy answer would be my son’s life.  Oh wish how I could reclaim that, how I wish we could go back and take this day out of 2008, pretend it didn’t happen.  Most days I don’t say this because even my heart of hearts I know that life is what it is because he died.  I am who I am because I loved and lost and not because I loved and kept.  And as hard as it is to say it, I know that I am a better person because I lost my child.  I lost him being part of my physical life but I know I didn’t lose a piece of my heart and soul...he lives there.  

BUT….

But today (and in the days leading up to today and the next few days too I’m sure) I do say it.  I do want my son here at my side and not just in my heart.  I want to hold his hand crossing the street, I want him sleeping in the extra bed in Cam’s room, I want to wake him with hugs and kisses every morning.  I don’t want to struggle to imagine what life would be like to have him here, to be raising twins...I want it to be my life.  I don’t want these tears streaming down my cheeks, I want laughter at his antics and craziness twin-ness to escape my lips.  I don’t want to feel sadness as I put my Christmas tree decorated with so many memorial ornaments up each year and as I shop for a gift with my family to donate to another boy his age, I want to be decorating our tree with 4 boys, to have fights over who’s putting which ornament on where with both my twins.  Ultimately I want to reclaim the joy that having twins should be. I didn’t get to experience that and I want it...I want it so bad.  
  
And so today this post is now entirely about my sadness, my wishes for the things I want to reclaim, about what I wish was different and the brokenness that exists in my heart when I imagine what life would look like if he was here.  Tomorrow can about hope, peace, love or joy (hah...it’s actually joy, I just looked) but today will be about wishing for what I can’t have and what I’d like to take back...  And that’s ok…

Tuesday, December 12, 2017

Advent Challenge Day 12 - Perspective


Today’s challenge, right from the original post, was to write about perspective.  Hmmmmm...pretty vague topic and one that took me a long time to really think about what to write about.  There’s so many facets to this word, this theme.  In relation to where life was 9 years ago I had wondered about writing about life from Cole’s perspective but I wasn’t sure I could emotionally bring myself to do that.  I thought about writing about the topic of what our journey was like from the perspective of others in our lives.  Recently I met with two other TTTS moms for supper.  They are two of my ‘oldest’ local TTTS friends and initially I only had ‘loss’ friends so they have many similar ‘perspectives’.  We talked about our families that day and I wondered out loud something that I’ve always been curious about….what was it like to be our families and our friends during our loss journeys.  I asked them if they had ever wondered or even asked what it was like for our moms and dads to get that awful phone call.  Or our siblings.  Or our friends.  In my case, I often have wondered what the Christmas gathering that happened the day we lost Cole was like.  How hard was it for Josh and Marjan to show up there, with my other two boys but without my parents, who’d been called and chose to come to the hospital instead of going to family Christmas, and tell all my aunts, uncles, cousins etc that one of our twins had died.  It’s  an interesting perspective….but its not mine and I really can’t write about something I’ve never experienced.  
So what do I write about, how do I focus on this theme of perspective when I am in the midst of this heartache of memories and emotions.  And so I decided to break and take these photos and then use them to write about two opposite but so connected perspectives….looking down

or looking up….

In these photos I think looking down gives a prettier picture, a more defined picture.  And perhaps that’s what it’s really about.  That after the fact, that when the time comes that you can look at things from a more complete place, from a better angle, you can see the whole picture better.  Your perspective is completely different when you are out of the situation, out of the chaos.  
But that’s not how life works.  We don’t get to live the forever after before we’ve lived the here and now.  
When you are in the thick of it, you are like my photo.  You are looking up and you can’t see the top.  You can’t see what the end will be and you often can’t see for the chaos that’s in your way.  You may see glimmers of light, of hope but really you have no choice but to live in the moment and pray for the whole picture to become clear.  
In the chaos of 9 years ago I couldn’t imagine that my life would be where it is now.  I also couldn’t have foreseen the outcome, couldn’t have imagined that in 24 hours I would learn that I wasn’t going to bring two little boys home from the hospital together.  But I could see glimmers of light and I had hope.  
The next day those branches covered that hope, the light was gone and I was unable to imagine my life any other way but in darkness and devastation.  But those lights, that hope...it was still there.  I just had to push the branches aside to find it.  
And now I can stand back and see the whole picture…

I can see that amazing things happened because I took this journey, that despite the heartache, the devastation, the sadness and the struggles to overcome it, it didn’t just change me for the better, it impacted people all over the world.  I can see that this journey was never just mine to take.  I took my family, most especially those two special little boys, with me but I met and impacted so many other families along the way and shared my perspective on life with them.
If I could have only seen the view from the top, I would have missed the journey of the heart from the bottom.  If I could have only seen the view from the bottom I would have been much too scared to find my way through it.  And if I could have only seen the whole picture I might have thought it was a easy, it was pretty...that it didn’t take blood, sweat and oh so many tears to get to where I am today.  

Monday, December 11, 2017

Advent Challenge Day 11 - Fearless



Write about a time you were fearless


I specifically moved this theme on to today, the anniversary of the day life began to change forever for us, the day we were introduced to TTTS, because I wanted very desperately to remember the times in this journey where I wasn’t afraid, where I wasn’t filled with fear for my babies. I knew those times existed, just as those amazing moments I wrote about yesterday existed. It becomes so easy for memories to be overshadowed by the emotions attached to them. Fear, sadness, heartbreak….all of those emotions have clouded my memory of being pregnant with twins and its a struggle to remember the joy I felt then. And so today I want to explore both the fear and then fearless emotions I felt 9 years ago.

Below is a excerpt from what I wrote for the book Forever Linked about this time in my life. There is definite element of fear expressed here but there is also a strong element of fearlessness, of trust in the team of doctors assigned to my case. That’s what I want to remember….the fearless strength that existed inside of me and the hope I had.


And when Dr. Hancock arrived to talk to me, I knew something was very wrong and asked him what it was. He told me that there was a concern with the growth of the babies and the sharing of nutrients. He explained that it appeared that one baby appeared to be getting too much while the other was getting none. I was to go to see high risk specialists the next day in London and he would be calling me by 4:30 with more info. They had me wait for a disk of ultrasound results to take with me and sent me on my way after taking my cell number.

I left the hospital in shock, trying hard not to cry. It just seemed too unbelievable that these little babes might be in trouble. I called Geoff and bawled but managed to get somewhat calm and agreed to meet him at our son’s school for our meeting with his teacher. I called my mom and cried on her answering machine and then tried my best to keep it together and drive back to home. I was so scared.

I made it 5 minutes outside of the city when my phone rang and it was the doctor. He said I needed to remain calm but that I needed to return to the hospital immediately as I was being sent to Toronto right away. He said to have Geoff come too and to meet him on the delivery floor.

And then I really wept. I could hardly talk when I called Geoff and our babysitter. It all seemed so unreal.

But reality didn’t really hit until I got to the hospital and spoke to Dr. Hancock. He explained that the doctors he’d spoken to in London told him to contact Mt. Sinai in Toronto and that specialist said, after hearing the results of the ultrasound that it was imperative that we come to Toronto right away. Dr. Hancock said that I would likely have surgery and be in Toronto for a week or so. And then he really scared me when he told me they would be giving me a shot of celesdone, a steroid given to strengthen premature babies lungs…they were afraid these babies were going to be born right away.

I cried and shook, my heart was breaking and my mind was racing with thoughts of these babies and the life I wanted for them. How could this be happening to me, to them, to our family???

Geoff arrived a bit later and met me at the door of the hospital. He just held me as I cried and tried his best to alleviate my fears. The next few hours were spent trying to reach those who needed to know while driving to Toronto.

We met with Dr. Wendy Whittle when we arrived at Mt. Sinai. She was amazing, very calming and assuring. She scanned me again and showed us the signs of this disease we now knew as Twin to Twin Transfusion Syndrome. She also was finally able to tell us that we were expecting 2 little boys.

Our babies were the same size, actually our recipient was about 15% smaller. Our donor baby had no amniotic fluid and no urine but other than that he looked very good.

Our recipient baby, however, appeared to be more affected. He had a full bladder, lots of amniotic fluid and his heart appeared to be somewhat affected, perhaps working harder than normal. The TTTS stages were explained to us and our babies were at Stage 3 with 8cm pockets and reverse flow for our recipient and no amniotic fluid or visible bladder but no other affects to our donor. Dr. Whittle seemed very confident that surgery would correct our problems and that our babies would be fine. She discussed our options and the outcomes of each. If we did nothing then there was a 100% chance we would lose one or both babies. We could try an amniotic reduction but this was not really an option at the stage of this disease that we were at. Or we could have the laser surgery preformed at Mt. Sinai, the only place where it was done in Canada. It did come with risks, one being pre-term labour and if that happened we would lose both babies as they were too small to be viable.



I remember Dr. Whittle talking to us at length about how optimistic she was for our babies. She felt that the TTTS had been happening for such a brief time because Cole’s fluid level was only the bare minimum to be considered TTTS and the boys were the same size. She told us there was mild stress on Cole’s heart but nothing too serious and that Cameron was in perfect health with the exception of the lack of fluid in his bladder. I remember her clearly saying “you’re in great shape….you’ll have this surgery to fix the problem and go home to grow some babies for the next 10-12 weeks’. She also assured us we were in great hands and told us a bit about Dr. Ryan and how amazing he was and how much we’d love him.


We left the scan feeling scared but confident that they would save our babies and correct the problem. The hospital brought a cot in for Geoff and gave us a private room. We sat together and cried and prayed…and talked. We were so scared but both of us tried to be strong. We talked about names for our boys and decided on Cameron and Cole. Geoff suggested that atleast one of the boys should be named after this man who was about to perform life saving surgery for them, the head of fetal medicine, Dr. Greg Ryan.

We fell asleep, or tried to, holding hands, both lost in a dream world of worry and stress.

Not that in what I wrote there, over 8 years ago, that I never talked about fear. I don’t think I was fearless, that I wasn’t only full of optimism and without any concern but I also was not so full of despair, worry or dread that I felt consumed by fear for what was happening to my boys.

On the morning of December 12 Dr. Ryan, met with us and scanned me at length again. He was a very reassuring person but seemed to be all business. We felt at ease with him but knew from his demeanor that this was a very serious situation. He explained TTTS to us again and discussed our odds. He said there had already been some changes in our recipient, Cole’s, heart and the fluid pockets had increased 2 cm’s in the 9 hours since I was last scanned. We wanted to do whatever we could to save the boys so the surgery was confirmed and booked. They began discussing the best place to enter the uterus and this seemed to take a long time. I had an anterior placenta and what I now know a velamentous cord insertion on our recipient though none of those terms were given to us. We did hear terms like acute TTTS but had no idea what that meant. I have since learned that having a velamentous cord insertion usually means poor growth in twins, often because they also have a poor share of the placenta. It is very rare to have both the cord problem and unequal share with the recipient baby…Cole…and a share of less than 25% does not often mean that baby will survive. Basically they just outgrow the placenta they have and do not have enough nutrients to survive. An anterior placenta is very difficult to do surgery on and some specialists won’t do the surgery if you have one. But as I said, I knew none of this at the time, only that I HAD to have surgery as soon as possible to save even just one of my babies. And so we sat in my room and waited for hours for the operating room to be ready and prayed and planned for these little boys growing inside of me.


And again, no words of fear but instead words of hope and optimism. I was not thinking that my boys might not survive, was not crying and sobbing. I was planning for having 2 more boys in my house, I was joking about having half a hockey team. I was planning for our future not fearful that we would not have a future that included these two identical little boys named Cameron and Cole.

When I tried to think of some sort of an image for fearless I couldn’t think of a photo I could take so I headed to the internet for some ‘fearless’ images and I found this one….


I thought it seemed fitting that I should end this post with a reflection on that quote and where I’ve see it applied to my life. Fear never does anything positive. We can’t live without it, it’s part of our make up and having it doesn’t mean we don’t have faith. It means that we have a human heart that strives for the best in our lives while knowing that sometimes things are out of our control. Having fear gives a knowledge of what can go wrong if we do nothing and it gives a reason to have courage to overcome what’s holding us back. Fear gives a reason to have faith in God, faith that things will turn out in the end, that we will overcome whatever it is that is threatening our lives, threatening the joy and hope we have. So yes, I definitely had fear but I also had courage, strength and faith….even if I didn’t realize it at the time. Deep inside my heart I knew that whatever happened with Cameron and Cole, I would be ok, that I would make it through this. It was a faith I didn’t understand and didn’t realize how important it would become in the weeks, months and years to come. I didn’t let the fear of losing my sons consume me then and I learned to not let the fear of how I’d ever survive without Cole control my life later. So I guess I was fearless.

Sunday, December 10, 2017

Advent Challenge 2017 Day 10 - Moment



Write about a moment you'd like to never forget or a moment you wish you could forget.



I chose this theme for today because 9 years ago today was a moment, a time, that I never want to forget. Nine years ago today was the last day of life as I knew it. It was the day before everything changed. It was the day before everything got different, got hard, got real.

I'm not sure I can actually remember the moments from that day. It was a Wednesday and I was working in Woodstock. I know I was quite excited that day because I was so hopeful that the next day would end the ‘what are you having’ mystery and I could finally start buying boys or girls clothes. I was always excited to go to both my obstetrician and my ultrasound appointments. At both I would get to see my babies and that was so amazing to me. Growing two little people inside my body was so fascinating to me, especially knowing that they looked exactly the same and that my body somehow had made that happen.

I marvel as I think about those times. Times when the greatest question about my twin pregnancy was what gender these babies were. Times when my greatest worry in this twin pregnancy was how I was going to breastfeed two babies at the same time. They were great moments, great memories. Being pregnant with twins was probably one of the most exciting times of my life. It definitely had its worries at the start but by that point, by December 10th 2008, I was definitely excited and definitely at peace with having to care for two babies when we hadn't even been planning to have one more.

Being pregnant with twins is a moment I don't ever want to forget. I wasn't sure what to include as a photo for this theme day of moments. I decided to include one of the last ultrasounds that I have from before December 10th even though it's not from this actual moment. Those two little round circles in there are my son's Hedge. Too Perfect, wonderful, much wanted and much love little heads, little bodies, little arms and legs, little hands and feet, 20 little toes and 20 little fingers. It's a moment of blessing.

Saturday, December 9, 2017

Advent Challenge 2017 Day 9 - Delight

Write about a great delight.






I wasn’t sure what to write about or take a photo of for this day’s theme. There are many things in life that are ‘delightful’. I have or will write about a few of them in this project that relate to my journey over the last 9 years. Since those will be covered, I decided to focus on what gives me ‘great delight’ at Christmas time. There’s nothing greater, nothing more delightful, than music this time of year. Here are some of my favourite songs. The first one is very traditional and I love the images presented with the videos. It's, by far, my favourite Christmas song.



The next two are newer songs that I just adore, most especially the song Noel. ‘Come and see what God has done.’ ‘The story of amazing love. The light of the world given for us. Noel’





And lastly a new song I'd never heard before and I offer it to all of you who are hurting this Christmas, all of you who aren't sure where you belong, how you will survive, where to find your joy and hope. Heaven hears the song your broken heart has cried and Jesus' love has come to find you.



"Somewhere In Your Silent Night" All is calm and all is bright Everywhere but in your heart tonight They're singing carols of joy and peace But you feel too far gone and too far out of reach Somewhere in your silent night Heaven hears the song your broken heart has cried Hope is here, just lift your head For love has come to find you Somewhere in your silent night From heaven's height to manger low There is no distance the Prince of Peace won't go From manger low to Calvary's hill When your pain runs deep His love runs deeper still He has always loved you, child And He always will Somewhere in your silent night Heaven hears the song your broken heart has cried Hope is here, just lift your head For love has come to find you Somewhere in your silent night Lift your head Lift your heart Emmanuel will meet you where you are He knows your hurt He knows your name And you're the very reason that He came Somewhere in your silent night Heaven hears the song your broken heart has cried Hope is here, just lift your head For love has come to find you Somewhere in your silent night Love will find you Love will find you Love will find you

Friday, December 8, 2017

Advent Challenge 2017 Day 8 - Light

Write about what Light symbolizes to you




Light, for me, has always symbolized hope. Essentially life is never without light. Even in the darkest places there always seems to be some glimmer of light that draws us in, brings us towards it.
In the darkest hours of my grief, in the time when life just seemed shattered, I would often awaken very early, before the sun and lie in my bed. In those early hours of the snowy December mornings I would snuggle under the covers and forget what was my reality. Inevitably I would remember and I would sob. It was a safe place and time for me to do this. The boys were in their own rooms and Geoff was still sleeping. No one needed to see my tears or the anguish on my face.
But as the night turned to day and dark turned slowly to light I would feel Cameron kick and I couldn’t help but to feel such hope. He was and is my hope, my light.
I know that it didn’t always work, that Cameron’s life didn’t always draw me out of the pit of darkness. It was so bittersweet to be carrying a living baby and one whose heart had stopped. It actually felt even harder once Cameron was born because I then I could clearly see all that I was missing. The darkness I felt was overwhelming at times and it consumed me, made me focus on negatives, what ifs and regrets.
But even in those dark times I could always ‘see’ light. It might have been the tiniest glimmer but it was light, it was hope. Sometimes it was hard to make myself look for that tiny light but I knew I had to, I knew I had people counting on me, I had life to care for, lives that needed me. And so I would search for the light. I would look into that darkness and I would find something to focus on that wasn’t the darkness and I would walk, slowly and carefully, towards it. With each step closer, the light would get brighter and brighter until it filled my heart with joy, with hope and with love. It took a very long time before it filled it with peace and admittedly, the closer I get to the anniversary time, the more I remember, the more I write about how I feel and what I remember, the harder it is to find that light of peace in the darkness.





But don’t worry…. The light of hope that comes with knowing my son is in heaven and I will see him again shines brighter than the darkness of the memories that surround me, of the sadness my heart feels.

I have always found myself drawn to flickering candle light, especially white candles and it makes me feel closer to Cole somehow. The photo below is especially powerful in this connection to all my children on the special day my celebrate his life.

Thursday, December 7, 2017

Advent Challenge Day 7 - Burn

Write about a time when you were burned

So this whole photo and writing challenge is based off something I found online from 2015. The challenge had all the days laid out and I only needed to change a few themes to suit my purposes a bit more and also changed the order of a few days to reflect things that I knew would be happening in my life (like the anniversaries we will ‘celebrate’ next week).  This theme of being burned was actually for December 11 I think and I knew that day needed to have a different theme given that it is the beginning of the anniversary of life changing forever.  So I had to move it to a different day.  I knew immediately when I saw the theme what I wanted to write about because, as it relates to this time of year and to coping with the loss of Cole, it's most definitely what I’ve been burned about the most.  I debated a lot about whether this was the right idea for this day, December 7th, but ultimately this seemed to be most fitting.


For those in the TTTS community the significance of December 7th varies.  It's a ‘self-proclaimed’ awareness day and part of TTTS awareness month.  While I think awareness months are, in and of themselves, a good idea, I don’t really believe we need an awareness day or month to spread awareness.  Like all awareness months, there is a focus on donating, in fundraising during this month.  Perhaps this is where my ears go up, my teeth clench and I begin to feel less than supportive of this awareness.

You see, International TTTS Awareness month, December, and World TTTS Awareness day, today, were founded by the founder of the Twin to Twin Transfusion Syndrome Foundation. Back almost 9 years ago, in the aftermath of our diagnosis, surgery and loss, I reached out to the TTTS Foundation. A few days later I received an email from their founder and it left me with, I don't know, an unsettled feeling. It wasn't that I felt like the person writing me wasn't sincere but I felt like there was so many unresolved issues for this person. It left me feeling with more questions than answers, like I was more unsettled. It almost felt like it was an outlet for her for her anger and dissatisfaction with her own medical team instead of helping those in the most need, in the middle of a crisis, get the support and answers they needed. At the time I asked what resources they had available as we really been given very little from Mt. Sinai. I was promised a variety of packages to help me understand what we just gone through and to help me in coping with the remainder of the pregnancy, the loss and the delivery. Sadly, those packages never arrived.

I did meet some very amazing people through the support that was offered on this foundation’s message boards as well as their Facebook page. I'm not sure how I would have made it through those horrible, dark and confusing times without the support of these people as well as people I met through what is now known as The Fetal Health Foundation.
For those who know me well, you know that I'm passionate about supporting others going through TTTS. Right from the beginning I felt a calling to do this and I was a very present member of the support groups. Initially I most definitely was on the receiving end of the support rather than the offering end. But as time went on, as I learned to cope, I began to offer more and more support to others. At the time, sharing my story was a way to share Cole, a way to keep him ever present in my life. My emotions were still relatively raw, still relatively new and I didn't always use the best filter when I was offering support to the newly diagnosed parents. It's not that I was brutal, it's not that I was harsh, but I just came out and shared my reality without any lead up, without any introduction.

Eventually I begin to notice the posts and comments like the ones I was sharing, the ones involving ‘the worst case scenarios’ seemed to disappear. They weren't always deleted but they were often pushed down further into a thread so they weren't as evident. A number of loss parents, like myself, began to see this and also began to see that there was a strong desire to have only positive stories shared, to have only double survivors shown in photos. Parents whose twins both survived felt only ‘positive’ stories should be shared but loss parents, who had been blindsided and unprepared for what became their reality, wanted to help prepare the newly diagnosed. When we complained to both the founder of the group as well as to the group in general we were basically told that we needed to find our own place to post about our children who are no longer with us. This hurt. It made us feel unwanted, rejected, and like we and our children didn't matter.

We expected the founder to step in with words of support and encouragement towards us loss parents since she is a loss mom herself. Strangely that didn't happen at all, she was notably absent from what became a definite bickerfest. Eventually I got a personal message from her asking me if this is how I wanted my son's memory to live on, if it was how I wanted my son to be remembered, through bickering and negative comments back and forth between parents And while I didn't want Cole’s ‘legacy’ to be surrounded by negativity, I also knew that his story was worth sharing, my story was with sharing, our story was worth sharing. There was so much to be learned from my situation because it wasn't typical whatsoever for TTTS.

And so a group of us started our own support group where we welcomed everyone. We welcomed their stories, we welcomed their experiences, and we limited photos as much as possible. For a while the two groups coexisted. There didn't seem to be too many problems except I did notice that anytime someone posted a link to our group it was immediately deleted by the only person who could delete it, the founder of that Foundation. It became apparent that she wanted no one to share an alliance and we soon found out that she also rejected anyone’s suggestions or help.  It was almost as if she felt she ‘owned’ anything to do with TTTS.

And then one day it all came to a head. A member of my group acquired tax documents for that foundation, a not for profit foundation whose income relied solely on donations, mostly from parents of TTTS survivors and family members of those babes who lost their fight and donated in their memory. My jaw hit the floor when I realized how they were run financially. At almost 70% of the donations that were taken in being turned around into the salary of the founder (which essentially meant she raised funds to pay herself and not to actually help those in need with added expenses), something felt really wrong to me. And I wasn't the only one, many others felt the same way. We discussed it in the group, probably not our best move, and within minutes, not even kidding, we were all kicked out of the foundation’s group. And not just kicked out, but banned and unable to even find the group. Over the next months and even years we discovered that anyone who aligned themselves with us, who showed any affiliation with us as a group as well as with the foundation partner that we had become part of, The Fetal Health Foundation, was also banned from her group. She even went as far as to ensure that the word Fetal (as in Fetal Health Foundation) and the name Lonnie (Fetal Health's founder) would appear as symbols, as swear words almost, on her foundation’s site’s message boards.  

I'm not going to deny that I said and did some things at that point that weren't of the character that I now possess, but ultimately my heart was always in the right place and my desire to help was rejected.  When all you want to do is help, when your passion is ensuring that other families don't walk down the path in the same manner that you did and when you feel it's a calling , being removed from a place where you can offer this support definitely makes you feel burned. My presence in the TTTS world as I’d known it back in the beginning of our journey had gone up in flames.  


Now I just want to add, for those who don't know, I've managed to make my way into the world of TTTS support with needing any of the connections I had with the TTTS Foundation.  Our TTTS support group has a few thousand members and is an active and amazing place.  I am closely connected to The Fetal Health Foundation and work with them frequently.  I even get 'referrals' for support from Dr. Ryan at Mt. Sinai (how cool is that!!!!) I also am very involved in a support group for mono di twins with a large emphasis there on support for pregnant moms.  Because we have these moms in our group early in their pregnancy, we quickly connect with them when TTTS is diagnosed, sometimes we're the front line in getting them help in time.  Just before the American Thanksgiving a woman posted in our group and said she'd been diagnosed the day before with stage 3 TTTS, the same stage as my boys had, and was being sent after Thanksgiving to Ann Arbor for possible surgery.  I knew right away this wasn't soon enough... if we'd waited that long both my boys would have died....and I suggested she get seen somewhere else ASAP.  I'm delighted to say she welcomed my advice and through knowledge I had, research online, support from the group and the grace of God, she went to Cincinnati the next day and had surgery the following day... 3 days prior to when Ann Arbor was even going to see her.  That's just one example of where I haven't let this experience of being burned and pushed away interfere with what I truly feel is a calling.   

Wednesday, December 6, 2017

Advent Challenge Day 6 - Hope



Write about something hopeful or hopeless is the challenge for today. There was no question about what I would write about here….the ultimate hope I have and where it first came from...hope in my salvation, hope that I will one day return to my home with my father in heaven and rejoice in paradise and, yes, hope that I will be reunited with Cole when I get there.

This hope wasn’t an easy one to come to. My struggle after losing Cole was intense and it actually got worse after he was born. I decided to take an ‘excerpt’ from my blogging project, from when I shared my story in all its glory and all it’s darkness last December.


After the boys were born and I finally had the opportunity to say hello and goodbye to Cole and to finally hold Cameron in my arms some of the worst of it was over. However now I had find my way back to normal. The problem was that normal was gone or maybe I should say the old Jodie and normal for her was gone. Finding my new normal would take months…well maybe years in all honesty…and would take some very painful moments and steps along the way. 

It’s said that there are five stages of grief, denial and isolation, anger, bargaining, depression and acceptance. I think I flitted from stage to stage in the beginning but then entered a mode of acceptance, for the time being, while I was in the hospital waiting for the boys to arrive. Now that they were here I found my emotions ranged from disbelief to deep sadness. It was surreal feeling to have Cameron in the hospital and all of us at home. It's like I was never pregnant and nothing in our family had changed. It was almost as if none of the last 3 months has happened and yet I was filled with such sadness at times that it was all I could do to not burst into tears. I met so many other families in the NICU who were amazed by my strength and courage but I didn't feel like I was strong, rather that I had just done what I had to do. I didn't have a choice because if I had, it wouldn't have been to lose Cole and spend months in the hospital. How did that make me strong??? In those moments I seemed to be in the stage of grief marked by all kinds of questions and just didn't understand why this had to happen. I felt that in time, and with the support of my family and friends, those sad moments would not seem so overwhelming but I knew that they would never go away and I would never stop missing the baby I never got to know.
I have often said I never got angry, never hit the angry stage but I know, now, as I explore this and remember things that I was angry at times. I remember beating my hands against my bed and sobbing into my pillow in the early days but I also remember asking, angrily, loud why I had to go through this. If I was only meant to have one of my twins home with me then why did I have to have a twin pregnancy in the first place...why did I need to experience this pain and loss??? I am not sure who I raged this against…the greater universe? God? I don’t know. I just know it was a pretty dark time in my life. I spent a lot of time ignoring my life….letting things go in the house, spending hours thinking, reading things online, trying to find similar stories and similar minded friends. My life around me, my family, my friends, my community, my home…none of this seemed to be as important was the people I met online who understood. 
When people would ask how I was I often said ok. I never quite knew what to say because I really wasn’t good nor was I fine. I was missing a part of my family and didn’t know how to deal with that at times. I was lost, confused, angry, sad, grateful, joyful, faithful and hopeful. What a mixed bag of tricks I was. I just couldn't get it into my head why this had happened. I rationalized sometimes that it was because I wasn't jumping for joy about having twins...not at the start anyway. But I wanted my babies, I wanted to make it work, I wanted to be that 'twin mommy'...the one people stopped in the store to admire their beautiful children who looked exactly alike. I got so mad at myself for the feelings I had when I read the TTTS success stories, it seemed so cruel of me not to feel joy that others don't have to go through this and I know it could be so much worse...I could have lost them both. But somehow that never brought me peace at this point in the journey. Sometimes I would look at the ultrasound pictures and the tears rolled down my cheeks. It hardly seemed fair that those two little boys would never play together, never snuggle up on my lap together for a story or two, never join their big brothers for a 4 man pile up on Daddy and never share a birthday cake together each year. I was consumed with all the things we would miss out on. I wanted so much for Cole and Cameron. I wanted to see them grow up together, to do the things that twins do together. To watch them communicate without saying a word. I wanted to dress them the same in matching overalls and watch them play outside in the sandbox. It felt so unfair that I never got to do that. But it seemed even more unfair that Cameron would never get to know his twin either.
Sometimes I wanted to be angry at God but it never seemed to come to that. I think I was finally getting it that sometimes crappy things just happen, that it isn’t His will to have a baby angel in heaven, that it isn’t that this was His plan, but rather it just happened for no good reason. Now God was here to hold us all, to comfort us and to look after my little one up there in Heaven.
My peace at this time came from believing that Cole was with us all, especially Cameron. I knew he would always be in my heart but most especially, that he would always be in Cameron’s heart and be a part of Cameron. For now, I felt, my heart was broken and battered. It would heal though, over time. It was like a puzzle and all of my children would always have a piece of that puzzle. It would only be a whole heart if Zackary, Brycen, Cameron and Cole’s parts were there…and so they are all there, forever with me for the rest of time. Each part will have different emotions attached to it at different times. Cole’s might always have the sad emotion but that was okay because without all four of those parts my heart would not be whole.
I knew I would get through this, I knew that because I’d made it this far and had been blessed by the love and strength of a God who never fails me and the support of so many people I didn’t know loved me so much. Although I appreciated it all, learning to trust God and to accept Jesus into my heart did not begin at all really until a few months after my boys were born... as I planned the service to say goodbye to our little boy. In preparation for what I would say, a friend had suggested I read a book by a woman named Jenny Hander, likely the first person to really deeply influence my faith journey. Jenny had also been expecting identical twins when TTTS reared its ugly head and caused her twins to arrive before 27 weeks. She was in a much different place in her faith journey but so much of what she wrote about resonated with me. What really hit home for me then was her writing about needing to let one of her twins go, to accept her death and the survival of her twin sister as part of God’s plan. She was a woman of immense faith, a strong Christian and yet she struggled to say goodbye to her daughter, to stop praying for God to return her to be with her family. Her final acceptance came when she was finally able to find peace, comfort and hope in the loss of her daughter because she knew that , by following the teachings of Jesus, by being the strong Christian that she was, she would see her daughter in Heaven. This was God’s plan for her and it was ok... she would see her little girl again. And suddenly I became so very fearful that I would not see my son again, that I was not doing a good job and that my place in Heaven was, by no means, secure.

That day I knelt down and I prayed and begged Jesus to forgive me for all my sins, most especially what my struggles to accept and grieve were doing to my family, to my children. I gave all my brokenness to Jesus that day, I handed him my wounded, broken and stuck back together with band-aids heart and asked him to fix it for me. I knew nothing about what it meant to come to Christ and had no idea that I needed to ask him to help me fix that broken heart, that I needed to do the work with his help but I do think that was the first day of the rest of my life so to speak.

  

My hope came in that moment and I began to be able to find my way out of the dark hole that was consuming me. It was a slow process that ultimately took a few more years to really come to having any sort of deep relationship with Jesus but it was the start and I’m so grateful for the hope that it stirred in my heart
.

Tuesday, December 5, 2017

Advent Challenge 2017 - Day 5 - Restore

Write about a time you were restored to health or wellness

This was a topic I wasn’t sure what to write about.  Initially I thought I had nothing, that I hadn’t really had an experience where my health was restored….I mean any more than anyone has when healing from an injury or getting over an illness.  But then I thought about the deeper meaning behind the word ‘restore’

Definition of restore

restored; restoring
transitive verb
1 : give back, return
2 : to put or bring back into existence or use
3 : to bring back to or put back into a former or original state : renew
4 : to put again in possession of something

And I thought of two examples in my life of this.  The first was an experience of my friends laying hands on me and praying for a restoration of relationships, of peace and joy and of, essentially, these things within my marriage.  


It was an amazing experience on a few levels.  To feel this kind of love, of acceptance, of support from a group of friends is awesome.  To feel the calm that settled in my heart afterwards, to see the difference in how our entire household began to pull together, to experience the sense that everything was going to be ok… absolutely amazing!!!

The second was the giving back of my hope, of my joy, my optimism and even my confidence in the healing of my heart after we lost Cole is sort of the ultimate restoration for me.  Putting back, bringing back into existence my joy and hope was not easy and it took years.  But I do feel now that I am in possession of this hope and joy and something more...peace.  I wish for all of you, especially those with wounded hearts, to have your joy, your hope and your peace restored.  

Monday, December 4, 2017

Advent Challenge 2017 Day 4 - Music

Write about a special song or how music affects your emotions.

Music speaks to me in a way that nothing else ever has.  It evokes such emotion, such longing, such intense feelings.  Sometimes those are so strong that I wish I could hide from them and from everyone around me who’s witnessing my reaction.  

For obvious reasons songs that are played at emotional times are often very hard for me to listen to for years to come. One that we had a Cole’s funeral that is emotion provoking for me is How Great Thou Art….especially this particular version.  I don’t make it through without crying but it’s become less about the memories of hearing it while we celebrated Cole’s brief life and more about just how awesome our God is. Over the years I've been able to make it til this particular part of the song before my voice catches, before the tears start to fall....

When Christ shall come
With shouts of acclamation
And take me home
What joy shall fill my heart

Then I shall bow
With humble adoration
And then proclaim
My God How great Thou art

Then sings my soul
My Savior, God, to Thee
How great Thou art
How great Thou art

My soul truly does sing (and my eyes tear up) when I think about this just how amazing it will be that Jesus will come to take me home, just how blessed we are to have salvation.

At Christmas time it’s usually Silent Night that gets me right in the feels.  I’ve had two experiences at Christmas Eve services with this song and the candle lighting that goes with it.  The first was a number of years ago, when Cam was still a baby/toddler and I was holding him on my lap.  I clearly felt weight/pressure on the opposite to where Cam was sitting and felt so connected to Cole, so sure he was sitting there too.  Two years ago I blogged about an experience with Silent Night. It wasn’t the same experience but it was visioning, feelings that hearing words from this song connected me to.  I was filled with peace despite tears streaming down my cheeks.  


Not all songs are evoke emotions that include sadness.  The song ‘I can only imagine’ by Mercy Me has been quite a turning point for me in my faith and in my journey to find hope.  Later this week I’ll write about the hope that came to me in giving my heart to Jesus...hope about seeing my son again. That’s what kept me going back in those early, raw days...the hope of salvation to the place where Cole was.  Essentially it was more about Cole and being reunited than it was about a life in paradise after my life here was done.  
And then I heard this song.

"I Can Only Imagine" I can only imagine what it will be like When I walk by your side I can only imagine what my eyes will see When your face is before me I can only imagine Yeah Surrounded by your glory What will my heart feel? Will I dance for you, Jesus, Or in awe of you be still? Will I stand in your presence Or to my knees will I fall? Will I sing hallelujah? Will I be able to speak at all? I can only imagine I can only imagine I can only imagine when that day comes And I find myself standing in the sun I can only imagine when all I will do Is forever, forever worship you I can only imagine, yeah I can only imagine Surrounded by your glory What will my heart feel? Will I dance for you, Jesus, Or in awe of you be still? Will I stand in your presence Or to my knees will I fall? Will I sing hallelujah? Will I be able to speak at all? I can only imagine Yeah I can only imagine

 A few years ago I wrote about my experience with this song and how much it changed the way I viewed heaven.  I look back now and I realize how immature in my faith I was before this...that heaven was a place for reuniting with people from my life on earth instead of reuniting me my father in heaven.  I don’t remember all of the emotional reactions I had when the realization that heaven was so much greater, so much more than just a reunion.  Rapture and joy accompanied by tears of happiness I think.  

Music is truly a gift from God and I pray that everyone can use it to connect to those emotional places that need healing and hope.