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.

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

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.

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.   

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.

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.  

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.