Monday, December 17, 2018

Holiday Grief Photo Challenge 3


I Wish
This isn't Cole. This sweet moment was never captured with him. There are no endearing photos of me holding him and I will forever wish I could have had those moments with him when he was born.
#iwishicouldhavemethimalive
#stillbirth #tttsloss
#whatsyourgrief





Memory
Today marks the 10th anniversary of the last day I ever saw my son alive. Today my memory is full of these twin moments, these memories of the two perfectly formed and identical miracles that God formed and placed in my womb.
Today I remember how awesome it is that this happened to me, to us, to them. Today I remember how blessed I am to be the mom of twins.




Legacy
Today, on our son's 10th heavenly birthday, we traveled to where this journey began and presented the doctor who did all he could to save both our twins with over $4200 bringing our total fundraising efforts over the years to over $37 000. 

This is Cole's legacy... helping other families on their journey with TTTS and other fetal distress disorders.
#whatsyourgrief #tttsangel #ttts #legacy #sinaihealth #sinaihealthfoundation
#tummerstwins

Nightime
In the days, weeks and even months after we lost Cole I would 'crave' bedtime. I needed a safe place just to 'be'... To cry, to sob, to scream into my pillow and to ask why, why, why!
















In time I came to realize that the second poem speaking to my heart, that my son was that piece and he wanted me to be too. That my son knew how much I loved him, but there were no words I needed to say to him that he didn't already know.









Empty
Though technically my arms weren't empty in this photo, they definitely felt it. This is the only I have of me holding Cole and it was one of the hardest moments of this journey. I was devastated to see the damage time had done to his little body and I was empty of any positive emotions of finally meeting him. My arms truly felt empty because my heart was full of sadness that I didn't get to meet him looking like the innocent and beautiful baby he was when he left us.
#stillbirth #tttsloss #tttsangel  

Thursday, December 13, 2018

10 Years in Heaven


This morning is hard, so freaking hard.  I want to put the words of my heart on here but I'm honestly such a mess that I don't think any of them will make sense.  I can hardly see through my tears and my mind is everywhere. It's full of memories of what we had for 23 weeks, memories of those awful moments of learning our sweet son didn't have a heartbeat and it's full of memories that we haven't had for 10 years. TEN YEARS!!!! I'm not going to lie to you, this year is brutal and I feel like my heart is broken all over again.
But then again does a broken heart ever truly mend?  Can you ever put together a heart that shatters when you loose a child?  In my 10 year experience, no. But then again why would you want it to fully heal?  Or maybe the question is what does a fully healed heart really look like?  The scars, the bumps and the bruises mine had taken since I learned Cole was gone are forever a part of me and I don't want them to go away.  If they go away then my connection to him goes away too.
And so I sit here thinking about all that 10 years has brought me and I let the tears flow. Tears of sadness for myself for not having his hugs and kisses, his questions and answers, his laughter and jokes, his wiggles and noise (those who know Cameron well often joke about what this would like...two Cameron's is pretty intense), not getting to be that 'twin mom', not experiencing so many things with him. Tears of sadness for Geoff, Zack and Brycen for all they missed out on having one more boy here. One more for playing games, having nerf wars, playing road hockey, going fishing, building and fixing together, play fighting.... so many things lost out on.  But mostly I have tears for Cameron and all he's missed by not having his best friend here. Having an identical twin is the coolest thing I can imagine for a kid...and my kids missed out on that experience.
I know this day will never be easy and each year I marvel and how brutally awful it is.  And then I sit back and realize I wouldn't want it any other way. The more years that pass, the further I am from the times I had with my son and that hurts in a way that only a parent who has lost a child can understand. But at the same time, the more years that pass, the closer I get to being reunited with him....and what a glorious reunion that will be. Right from the start, from within days of losing Cole, I realized how lucky I was that when I got to heaven I would not only be reunited with him but I would know exactly who he was (a bit silly since of course a mom would know their child) and would have a lifetime of earthly memories that connected with the face in front of me that I was finally seeing after all these years and yet have seen all of my life as I raised his twin brother. 

And so now I am left with the final task of writing to my son in heaven and telling him just what he and this day mean to me....

My dearest son Cole;

Today is a big deal sweet son of mine.  It's a really big deal to your mom, most especially to your mom's heart.  It marks a decade that you've been away from us. A decade that you've been in heaven.  A decade of growing up.  A decade of being away from your identical twin.  A decade of us having no memories of you.  A decade of missing you, of loving your presence without ever getting to hold and hug you, a decade of missed laughter, memories and moments and decade of tears. Ten is such a big deal around here. Ten is when you can finally stay home alone for short periods of time. Ten is when you can cross the highway and play 'on the other side of town' without an adult or older sibling (though your twin has pushed that one up 6 months or so and I'm sure you two together would have convinced me you could do it at 8!).  Ten is a generation in the eyes of many so basically you've missed a generation of people being born.
Ten.
Ten.
Ten.
Oh how I hate this day and all it means. Ten years without you is just brutal. I don't want to celebrate this day because how can I ever celebrate the 10th anniversary of the worst day of my life. Nothing about that day gets 'easier' and reliving it hurts like heck. But I can't not relive it because reliving it reminds me of you and how much you were and are loved. Reliving it reminds me of how much you were wanted and needed here, how much you are missed and loved. Reliving it reminds me that a piece of my heart lives in heaven and though it was never 'supposed to be this way', it is my reality and I have to find a way to co-exist with that reality. 
And I hope I have. I hope I have done a good job of living with you here in my heart and not in my arms. I hope I have brought your spirit here and lived it for you.  I have tried to walk the steps you didn't get to with dignity and grace, with purpose and energy.  I want you to know that you have made such a difference here on earth, have impacted so many lives and helped so many people...all through the life you gave to me when you left this earth. I hope I've done it well, I hope....
Well I hope you know how missed you are and how much we wish things could be different.  At the same time I hope you know that we will never let your memory fade, that we will do what we can to honour you, to build a legacy in your name.
I hope you know how much I love you. Yesterday, today, tomorrow and forever you are loved, you are missed and you are honoured.

Love you so much sweet son of mine,

Mommy

Tuesday, December 11, 2018

First Day of Forever


Today marks the 10th anniversary of the day my life changed forever. It was the day that four simple letters would become part of my daily thoughts, words and heart for the rest of my life. I realize it's only 10 years later, not the rest of my life yet, but I guarantee you that TTTS is a part of my daily life. And I guarantee you that it will be that way forever. Those 4 words changed us forever and there's no going back.
Before that day I had a very vague sense of what TTTS was. I actually even knew someone who had lost a nephew to it. I knew it was a complication that could happen and is the kind of pregnancy I had but I also had been told, and had read, that it was so very rare that it was really not something I needed to worry about, that it was only something my doctor should worry about. And my doctor did check for signs of it I guess but I don't really know that he knew what he was looking for all of the time.
Today I will think about that day. I'll remember seeing him that morning and how he told me everything looked great. I'll remember how a few hours later I went for a scheduled ultrasound only to find out the hospital had cancelled it on me and not informed me. I remember becoming, honestly, quite bitchy with them and insisting they do it anyway. The motive behind that had nothing to do with the health of my babies but was purely selfish. I wanted to know the gender of these babies so I could finally buy them clothes. Little did I know that the fight that I put up for that ultrasound would ultimately save the life of Cameron.
I will remember them telling me that they weren't sure they got all the right measurements and they needed to have a radiologist come take a look. I remember that doctor doing many scans, taking measurements and listening to sounds that I now know were dopplers. I had no idea what was going on and that the time I wasn't too worried. I didn't become worried until they told me they were just taking a look to ensure they had everything and 20 minutes went past. Then I knew something was up and the moment my doctor walked into the room I knew it was something bad. As soon as he started talking to me about what was going on I knew that it was Twin to Twin Transfusion Syndrome and I even mentioned it to him. I still had no idea the magnitude of how those four words would change my life for forever.
I will remember driving to Toronto and be coming very anxious as we got to the downtown area. That anxious feeling comes back to me everytime we go down.
I will recall registering at the hospital and then giving me to wrist bracelets for the babies. I told the lady at the best but I didn't need them because my babies were not going to be born in that hospital. And the I was right about that I would have rather have had them both born there than one of them die there.
I will remember being admitted through triage and bleeding all over the nurse and the floor when they put my IV in. I will never forget meeting Dr Wendy Whittle who gave us such reassurance things were very favorable for us. She was so confident that the TTTS had been happening for days at best.
and I will remember saying the last prayer I would say for many many months that night as I try to fall asleep. I remember asking God to be with both my boys , to keep them safe and inside of me for another 10 or more weeks.
It was the first day of my forever.


Holiday Grief Photo Challenge

Together
I'll be honest here. In the early years of grief I didn't think we'd make it to the 18 years we just celebrated. Losing Cole put a lot of strain on our already struggling marriage. We turned away from each other and tried to work through it by ourselves. But slowly the darkness in our hearts began to open up to light and together we found a way to support each other. Together we are better....even if it doesn't always feel that way and isn't always pretty.
This was a tough topic for me because I wrestled with 'there has to be a purpose in this loss, this journey' for years. My faith was young and so caught up in what I'd grown up believing that I felt I was in a war between 'God has a purpose and a plan in all things including the death of my child' and 'crappy things happen but God will walk it through it with me'.
In the end the later has become the start of a journey to make Jesus the purpose, to take him into my heart and allow him to walk through all of it. He guides me to use it for greater good than any evil the enemy ever could have.

Holiday Grief Photo Challenge
Grief Trigger
Everytime I hear How Great Thou Art , especially by Alan Jackson, it triggers such a strong reaction in me, most especially at the verse that talks God coming to take me home. Home is where Cole is. Home is where I want to be some days. We came across this version when Geoff was looking for a different song by Alan Jackson, Where Were You When the World Stopped Turning, in the days after Cole was born still...as for him the world stopped spinning the day Cole died. I immediately began to cry and have NEVER made it through any version of this song without crying. We played it at Cole's memorial service.









Holidays
There are many holidays that we, the parents of children gone too soon, feel the intensity of missing them but none as much as Christmas for many. With a loss happening a mere 12 days before Christmas in 2008, this holiday was painful then and remains a trigger to this day. It's always been important for me to have Cole honoured and included in our Christmas celebrations and each year our tree has been blessed with a bit more Cole.

Wonder
I've always been full of wonder when it comes to my twins and their connection. When I look at this photo I wonder what has gone on inside our surviving twin's head and heart. I wonder what he thinks of being a twin but not having Cole here. And I wonder what it was like for Cameron to see and feel Cole move and interact with him for 23 weeks and then suddenly he stopped moving.
Heartbreaking really...




Gift
These two little beans are 2 of the 4 greatest gifts God ever gave me and their journey, from unplanned conception to our double surprise at 11 weeks of pregnancy, from the many ultrasounds to the one that changed our lives forever almost 10 years ago, from the moment we learned Cole was gone til the moment we met them both, from saying hello and goodbye to finding ways to forever honour their journey...all of it is a gift!


Health
For the remainder of my twin pregnancy, after Cole had passed away, I worried about Cameron. I wondered if he'd actually be born alive, if he'd suffered complications from TTTS and losing his twins, if he'd walk or talk.
His cries at birth made my heart sing and helped me deal with the heartbreak I was dealing with. And when I finally was able to see this beautiful face without wires and tubes, when I saw him so healthy...well a peace settled over me and I knew it would be ok.   

Cold
This place of Cole's isn't a place I feel connected to him in. It doesn't make me feel cold but it isn't where he is for me. He's in my heart.

Monday, December 10, 2018

A Surprising Reaction to a Song

I'm participating in a photo challenge this holiday season that has daily themes. Today's theme is music and as I walked this morning I  thought of so many songs that connect to my grief and to my feelings about Cole. I thought I knew what I'd post later today and carried on my walk. Today I chose to listen to Christmas music as I walked. This song, one I've sung as a solo artist church at Christmas for over 20 years, came on and I burst into tears . Given the significance of this day, the last day the old Jodie existed 10 years ago, the day before our lives changed forever, I felt God had placed in my path for a reason and given that I haven't written in almost a year I felt that He was asking me to write, to reflect and write. So here goes....
"Breath Of Heaven (Mary's Song)"

I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father you have come
And chosen me now
To carry your son

My mind travels here to the journey we physically took 10 years ago tomorrow.  Although it likely wasn't a moonless night, I was definitely weary with 2 babes inside.  I was scared and I my heart was full of fear.  I wondered why I was on this journey although I know I wasn't thinking of asking God this question...not yet.  I didn't have that relationship with Him yet.  But I definitely wondered 'why me'.  
Now I still wonder.  Why did God choose this to be my journey?  Do I even believe that this is how God works?  That He chooses these hard journeys for us?  I am not sure but for the purposes of this writing, I'm going to go with yes, I do think he chooses us...so why did he chose me?  Why did I get pregnant with 2 babies if I was only meant to bring one home?  Why did this NEED to be the path we took as a family?  I believe I know some of those answers but I know that I'll never know all of them this side of heaven.  And I also know that this time of year it's very hard to not just be focused on why did this have to be my journey?

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

This verse reminds me so much of that night in Toronto 10 years ago.  I remember laying in my hospital bed crying and holding Geoff's hand (as he snored of course) I was so frightened by the load I was bearing, by the life threatening situation my unborn sons were facing.  I felt alone and I was so very scared.  I remember praying and asking God to be with me and with them. 
And this morning I also felt fear in a sense.  Fear that I would break down this week at inappropriate times. That I would struggle to catch my breath, to stop the tears, to keep going when all I wanted to do was curl in a ball and cry.  I prayed for God to be with me and help me get through it all.  And as I heard the chorus below start I prayed for the breath of heaven to enter me, for the peace of heaven to come into my heart and give me strength and comfort.  

[Chorus:]
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Lighten my darkness
Pour over me your holiness
For you are holy
Breath of heaven

Do you wonder as you watch my face
If a wiser one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me

And this is where I am today,  I am left with wonder of what God thought of me as that night as he watched my face?  As he heard me pray to Him to keep both my boys safe and allow them to stay healthy and inside me for another 10+ weeks did He think 'I should have picked a wiser person for this journey as this woman is not realistic about the situation she is facing?' Did I offer all I was for His plan?  No...I definitely didn't because I could not pray to Him again after Cole passed away because I didn't want to face another unanswered prayer.  I didn't pray for strength really because I thought everything was going to be fine.  I definitely should have prayed for more strength.  
And today...did God, and Cole too, wonder as they watched my face.  Is this what God wants me to do with this pain and hurt?  Is this how I was supposed to respond?  Should God have chosen someone different for this journey?  

Holiday Grief Photo Challenge 2018


This year I decided to participate in a photo challenge during the month of December. I have not been posting them here but have decided I should. Hopefully I'll be able to post them once a week or so. This week I'll also get back to some writing. 


New Normal
The old normal was a whole heart that I never knew could be so completely connected by pieces that belong to everyone in our family. We may not all be here on earth together and there may always be a piece that hurts a lot more than the others but together we are a family. 





Light and Dark
Sometimes the darkness seems so prevalent in our grief. It surrounds us. It overwhelms us. We wonder when the dark will end. But like the darkness of night, there is light the comes, the sun rises and light sneaks into the dark and spreads out. Darkness may return but know, like the dark of night, there is an end, a new day.
#whatsyourgrief #holidaygriefphotochallenge
#infantloss #twinlesstwin

Forever
This complete family photo that was made for me will always be my forever....forever a question of what it would be like, forever hard to imagine and most of all forever what my family will consist of in my head and heart. A dad. A mom. 4 boys including a set of matching ginger haired boys.
#whatsyourgrief #holidaygriefphotochallenge #ttts #tttsloss #twinlesstwins#myforeverfamily





Help
Finding a way to make this journey, this loss make some sort of sense, have some sort of purpose has taken me years. Right from the start I felt God was calling me to offer others support and advice, and asking me to advocate for better care in mono di pregnancies as well. And so all of these groups were created by me, along with some friends in some cases, to do just that.











What If
I'll always wonder what life with twins would be like. Most days I can't imagine it and don't even have a minds visual of Cam as part of matching set. But my heart will always wonder just as it will wonder what might have been if I'd had different doctors early on, if surgery has happened earlier, if diagnosis had happened later and we'd delivered prematurely instead. What if....
#holidaygriefphotochallenge
#whatsyourgrief #ttts
#twinlesstwins #tttsloss #tttssurvivor #tttssurvivorwithaguardianangel 



Separate
Today I moved all my Willow Tree figurines to a different area for Christmas. This lone girl was left behind as I kind of forgot her. It made me think of me, of being by myself, seperate, at times. Quietly looking at the world around me, wondering where I fit in.... especially around people who were apart of my life 10 + years ago. I feel distant, alone in my thoughts, full of contemplation on why I'm on the journey I'm on. Is this really my life?

Sunday, December 24, 2017

Advent Challenge Day 24 - Give

Write about something you have given

Like yesterday’s post, the automatic thought this time of year when you think of something you have given might be the brightly wrapped presents under your tree this year or years gone by with the name of a loved one on it.  It might be thoughts and memories of shopping for that perfect gift and of the reaction to it.  

But for me there is no more perfect gift that I’ve given then what I’ve given to others in memory of Cole.  That encompasses a lot of things, a lot of areas.  Yesterday I wrote about the gifts God has given to me that I’ve been able to share with others. Having spiritual gifts to be able to offer support, encouragement, hope and comfort to those in need is a gift worth giving in my opinion.  It’s one I feel blessed to be able to give.  There’s a feeling I get when I know my words have been a comfort, a blessing and a help to someone.  It’s a feeling of something being right in the world if that makes sense.  A feeling like I’m doing what I’m supposed to be doing and that this journey is so worthwhile.

The gift of my time and of my spiritual gifts offered to words through words and help online is a pretty big part of my life.  I don’t know, nor do I actually want to, how many hours I spend doing it.  Years ago I talked about this time as a family balance of my mommy time.  Each member of my family gets a piece of my time and the time I spend helping others, the time I spend reaching out and offering support or going to the resources I have available to me to get them help is what I consider my mommy-ing Cole time.  I don’t get to have hours on earth with him making his meals, washing his clothes or making his meals and most especially I don’t get time with him playing, reading, going places and creating memories.  So for me it feels like this is his time.  And that feels just right.

Another area of gift giving that I do in memory of Cole is our annual fundraiser.  For those who don’t know, in 2010 we began our plan to give back to Mt. Sinai and Dr. Ryan.  That year we held a dance with a large silent auction and a few other side activities, including Zack, then 7, cutting his long curls off and raising over $900.  The following year we held our first more public event...a mom to com sale and movie night.  From there it became, for a number of years, a halloween themed event with an evening family fun night...costumes, party games etc.  That event grew, moved locations and then grew again.  We added in a 5k run that I actually trained for and ran in for a few years.  Now it’s a Christmas Gift and Craft show with a 5k run and a photo scavenger hunt.  It’s a ton of work and admittedly I do most of it on my own ahead of time along with the assistance of a great friend who understands baby loss all too well.   Together we organize a huge silent auciton (I find almost all of the 80+ items and she posts them online, organizes the bidding) as well as organizing and setting up for our 40+ vendors who come to sell the wares and help support us too.  There’s always a few tense moments but in the end we, her, myself and my whole family, walk away knowing we’ve done a great job and held a successful event.  It feels good, it feels right and it’s a gift I don’t mind giving… and I don’t mind handing over these big cheques either….