The Gift of Tears and Emotions

I have spent a lot of time in the last day or two thinking of what I should write today and so often I found myself tearing up. I quietly look away, move to a new activity, try to stop them.  Last night I composed part of this blog piece in my head while driving and couldn't stop the tears even though I tried to push them away. 
This morning, in the quiet hours of the day, I found myself remembering this day 6 years ago and wishing what was, wasn't and what wasn't, was.

I wish this day was about remembering the strong kicks I felt as I lay in bed in the early hours of that morning, so full of hope and wasn't about remembering laying their hours later sobbing curled up in a ball. 

I wish this day was about remembering the excitement of seeing both our boys on ultrasound, healthy and happy after a successful surgery and wasn't about remembering the words 'this baby doesn't have a heartbeat, I am sorry, this baby is dead'.  

I wish this day was about celebrating the miracles performed at Mt. Sinai Hospital and wasn't about preparing my heart to return there to visit and present our much loved doctor with 2 years worth of fundraising done in memory of our sweet son. 

I wish this day was about marveling at those same medical miracles as I gaze at my two perfectly healthy, mirror image twin sons playing together and wasn't full of thoughts of what would life be like if I had gotten to watch Cam and Cole grow up together.  

I wish this day could be one where I reflect on how close we came to losing them both as I think of all the memories I have of them growing up together for the last 6 years and wasn't about thinking of that day, of how it felt to learn my dreams for them were shattered just like my heart. 

I wish this day was about preparing for and enjoying a big family Christmas and wasn't about remembering that on December 13, 2008 this same large family gathering was overshadowed with sadness and shock.  

I wish this day was about joy, celebration, excitement and happiness and wasn't a day I will cry on every year for the rest of my life.

And as I thought about that and tried hard to not cry, tried to get out of bed, wipe the tears from my eyes and get on with my day I realized that this day has a gift and I need to recognize that for what it is.
Tears are a gift and tears will be something this day is about for the rest of my life. Tears show that my child made a difference. Tears show that my child has forever changed my life and will motivate me to help others forever...no matter how hard that might be some days. Tears show that I wear my heart on my sleeve...that I am open and honest about how hard this is at times, that loss, stillbirth and infant loss, are as important as any loss and should never be made to feel like they are taboo. Tears show that this happened, it's real, that I miss my son, always will and that he misses me too.
I can't stop the tears today and that is OK...I should never be expected to because Cole was, is and forever will be, my son,  a part of me that is missing and someone to never forget.
Tears keep his memory a live. Tears cleanse my heart. Tears release the sadness and questions. Tears open my heart for cleansing to continue.
Tears make me human

And so I will cry today, now as I write this and choke back sobs and allow them to stream down my face, I will cry today as I share this day with the family that was gathered together 6 years ago and have always been so supportive.  I will cry today as we do something to honour our son with our boys and maybe some of that family....write some messages on balloons and release them to send them to him in heaven. 
I will allow those tears today as a way to honour, cherish and love my son and I will know they are as much of a gift for what they do for me and maybe others too as was the life that they are shed over, the life that changed so many hearts without ever taking a breath, the life that has inspired so many awesome things in my life.

I love you so much Cole Edward Ryan Tummers and I thank you, with my tears, for giving me these memories that have motivated me to become who I am today.

Gifts for Christmas Mourning - Medical Miracles

Six year ago today I spent the day waiting and worrying.  I had learned about TTTS.  I had learned about what was happening inside of my body and how my boys were handling.  I had learned what could be done and together Geoff and I made a choice to do all we could to save one or both of our babies. 

Today on this twelve day of my gifts for Christmas mourning project I want to talk about the gift of medicine that I came to appreciate after our experience and especially after the loss of Cole.  I think I always had an appreciation for medicine but had never grasped just how amazing medicine is.  What can be done by these skilled doctors is nothing short of a miracle.  I have talked about having surgery for years, about how this surgery saved Cameron’s life and how the blood transfusion he had the next day saved his life or improved his quality of life.  But I don’t think I’ve ever explained what happened six years ago today and so I decided today that I would share just what a gift medicine is.

We were faced with the decision of what to do to save our boys.  The odds were in our favour.  It was very evident, upon arrival and assessment,  that our case of TTTS had been happening for days at best and there was very little affect to our boys at this point.  We were told how that could change and the only way to ensure that the transfusions between the babies stopped was to do laser coagulation of their shared placenta.

Laser coagulation  is performed in an operating room. After the patient’s abdomen has been washed with an antiseptic and covered with sterile paper drapes, an ultrasound is performed to determine the appropriate spot to enter the uterus. The skin is then injected with an anesthetic medication to “numb” the area and deep tissues directly under the selected site. An anesthesiologist will also administer medications through an intravenous line to produce sedation. A small skin cut is made to allow the introduction of a thin hollow tube and needle. The instruments are inserted under ultrasound guidance into the amniotic sac of the recipient twin. The needle is removed and a telescope (fetoscope) with a thin fiber to carry the laser energy is then inserted through the hollow tube. The fetoscope is used to look directly at the blood vessels on the surface of the placenta. Vessels that are found to communicate between the twins are then closed using laser light energy. At the completion of the surgery, the extra amniotic fluid in the recipient twin’s sac is removed to achieve a normal volume. The procedure may take 45 minutes to two hours depending on the difficulty of the case. Our case was a bit more complicated because when Dr. Ryan went to trace all these shared vessels he was unable to see if they were causing issues where the dividing membrane between Cameron and Cole met the placenta.  He needed to make a small hole to take the laser through to the other side of my uterus and then was able to laser off a few more connections on that side. This procedure is called a septostomy and in our case it was actually quite a large one.

Laser ablation has been shown to result in the survival of at least one twin in 70 percent to  80 percent of cases and both twins in one-third of cases. Should one fetus die after the procedure, the likelihood that the surviving fetus will develop complications is reduced from 35 percent to approximately 7 percent. This is because the babies are no longer sharing blood vessels between them. In one-third of cases, neither twin will survive. Without this procedure the chances of both twins surviving is almost 0.  Dr. Ryan has shared with us in recent years that because of the make up of my placenta if we had not had the surgery before Cole passed away then there was a 100% chance that Cameron would have had serious neurological complications and a 93% chance that he would have passed away.

The following day, after we learned that Cole has passed away, there were many many scans done on Cameron.  His heart looked great… it was in fact a cardiologist who was doing a fetal echo who discovered that Cole’s heart was no longer beating….but his brain was showing signs of severe anemia.  There were a few theories shared about why this was happening but it really didn’t matter why it was happening, what mattered was what this meant for Cameron and what could be done for hm.  Severe fetal anemia Fetal anemia is an inadequate number or quality of red blood cells in the fetal circulatory system. Red blood cells carry oxygen to the cells and organs within the body. Anemia can lead to many complications in the fetus. As with many fetal conditions, anemia can range from mild to severe. If the anemia is severe, the fetal heart tries to overcome the inadequate number or quality of red blood cells by pumping harder. This can result in fetal heart failure (hydrops).Our case was severe.  We were told that all the scanning was being done to ensure they weren’t going to be treating a very sick baby (who had no chance at a normal life).  Dr. Ryan felt that the benefits outweighed the risks and that the damage hadn’t been done yet but it was definitely severe.. If the anemia is moderate to severe, a fetal blood sampling and transfusion may be necessary. Under ultrasound visualization, a sample was taken and assessed right in the treatment room.  From that assessment the amount of blood needed to bring Cameron’s blood levels back to within normal ranges was calculated and compatible red blood cells were transfused directly into his body.. This procedure is very similar to the procedure performed to obtain a sample of fetal blood. The following day Cameron was reassessed and was showing mild signs of improvement and we were discharged with instructions for a follow up MRI to be performed later that week to assess the degree of brain damage that he had sustained.  Note I said the degree of brain damage.  We were always led to believe that there was going to be some brain damage. 

Thankfully this MRI proved that Dr. Ryan had performed this transfusion as well as the laser surgery just in time…no signs of brain damage were apparent.

Things have only improved since this time.  The statistics for double survival are much higher.  This is due to a few things but mostly due to improved surgeon skill with state of the art equipment.  That state of the art equipment isn’t cheap and I am pleased to say that our family and our fundraising efforts have been a part of the purchase of this new equipment. 

Please consider helping us to support this gift of medicine, this gift of life saving equipment by donating to our 2014 fundraising campaign via this link.  http://mountsinaihospitalfdn.akaraisin.com/PersonalPages/Participant/Home.aspx?seid=6777&mid=66&pid=1891612

We will be travelling to Toronto on Dec. 22^nd to thank Dr. Ryan, seen below with Cameron, and present him with a cheque representing our 2013/2014 fundraising efforts. 

Gifts for Christmas Mourning - Memories

Today marks the beginning of the anniversaries in this journey we took 6 years ago.  I left for work 6 years ago today... a Thursday. I remember being so excited that morning as I hoped we'd finally learn the gender of these babes inside of me.  Little did I know that life would never ever be the same.
I decided today to spend some time sharing the memories of happy times (and yes, I will share a few of the scary ones from 6 years ago but I don't go further then this day six years ago).  Memories of those happy times have gotten me through many a tough day and I never realized how much of a gift a memory is until we took this journey.  I know I touched on this on my first day of this blogging project but the memories of my twin pregnancy overshadow my sadness...well most days.  It was such an amazing time.
On Sept 19/08 I went in for an ultrasound screen to check for any early markers for things like downs syndrome, spina bifida etc.  Expecting a simple quick ultrasound, this is what I saw instead...

TWINS!!!  How is that possible???  I have many memories from that day.  Telling my husband who couldn't stop grinning, calling my mom on her cell to tell her and her very excited response (Holy Sh*& Jod, Holy Sh*&), my dad picking me up in a bear hug and swinging me around and the many, many congrats that I got from the multiple friends I saw that weekend.
I remember telling the staff at my school and eventually telling the students there as well.  They were beyond excited.
I remember being obsessed with finding strollers, cribs, bouncy seats, swings. I also remember searching so many message boards for support...though ironically now I run these types of support groups and I know I give much more thorough advice and am much more knowledgeable...because I have to be!
Each appointment was a joy....

It was such a special time in my life.  I remember the excitement about matching outfits, about excursions with cute little matching babies.  I remember telling everyone that I was expecting twins and how excited so many people were for me.
There is nothing that can steal that excitement.  I was, am and forever will be the mother of identical twin boys.  I was given the gift of being the mom of twins!!!!
That day has some sucky memories of course... I remember laying on the ultrasound table waiting for another tech to come and take a look and thinking why are we doing this again.  They found the  membrane weeks ago, they aren't mono mono twins, we know that for sure.  And then when they were done but said they wanted to just verify that they had all the images they needed and could I just wait for abit....and wait, and wait, and wait.  It was cold in that room and I was anxious to get going.  We had a parent teacher interview for Zack and if I didn't get going soon I was going to be late. 
And then I remember Dr. Hancock coming in to the room.  He looked very serious and he pulled up a chair beside me.  I immediately said 'somethings wrong isn't it'.  He looked at me very seriously and said 'do you remember how I told you that I was not worried about you going into preterm labour  and having these babies early but that I would always be watching to make sure the babies were growing at the same rate? Well there is a problem and they aren't.' I knew the words twin to twin transfusion syndrome and I asked if it was that.  He said it appeared so and that he needed to send me to a specialist the next day in London to verify this.  He didn't have a lot more information then that but asked for my cell phone number and said he'd call once he'd heard from London. 
I remember calling Geoff, in tears, to tell him there was a problem.  And then a few minutes later I remember my cell phone ringing and it being Dr. Hancock requesting I get back to the hospital asap as I needed to meet him on labour and delivery so he could explain what was going on but that I needed to go to Toronto immediately. And then I remember bawling...sobbing out of fear for my unborn children. 
I am not going to continue with these scary memories because it doesn't do as much good as recalling these ones...
- meeting the most amazing nurses and doctors upon being admitted to Mt. Sinai
- having an ultrasound where we learned, finally, that our babies were boys
- having TTTS explained to us in such an easy to understand way and being told that we were in a great place...not just for the treatment but that our boys were only mildly affected and there was no reason to think that the surgery we would have would solve this problem and we'd be home in no time to wait for the arrival of our boys, hopefully not for another 10+ weeks
- sitting in my room with Geoff and naming these beautiful boys Cameron Ryan and Cole Gregory.... after the doctor that would save their lives.

Memories are a blessing and a gift and I am so glad they can never be taken away!

Gifts of Christmas Mourning – Belief, Faith, Assurance

I did a piece on my faith a few days ago and by far it is the best gift that grief has given me.  Today I want to touch on another component of faith, of something I believe in, in an assurance I have.

I struggled so much after we lost Cole.  The whole first year was one bipolar moment after another.  How could I be so sad when I was so happy?  How could I be so happy when I was so sad?  After I read Jenny’s book and ask Jesus into my heart a seed was born.  It was a seed of assurance that I would one day see my son again.  I didn’t understand what it took to get there, to get to heaven but it was about all I had that kept me going many days.  I had to believe that God had a plan for both me and Cole and that one day it would all come together and we would be together again.  But I struggled, and I still do at times, to feel a connection to him.  It’s so hard to feel like someone’s mom when you didn’t get the chance to be there mom in a place where visual memories are born. 

I wanted a sign that he was with me, wanted a sign that he was watching over me.  I begged God to let him visit me, to give me a sign that Cole was ok.  I searched everywhere for those signs too. About 18 months after the boys were born I had this encounter and I felt like this was a sign from Cole.  It brought me comfort but it wasn’t til I came across this post as I searched for another one I’d written before that I realized my new faith beliefs don’t’ line up exactly with what I wrote here and yet I now can see Cole’s hand in my life in so many other ways. 

Before I write any further I want to share the basis for the post I found and then I’ll comment on where I am now, what I believe….

I Believe - Diamond Rio
Every now and then
Soft as breath upon my skin
I feel you, come back again
And it's like, you haven't been

Gone a moment from my side
Like the tears were never cried
Like the hands of time
Were pulling you, and me

And with all my heart, I'm sure
We're closer than we ever were
I don't have to hear or see
I've got all the proof I need

There are more than angels watching
Over me.. I believe.. ohh, I believe.

Now when you die, your life goes on
It doesn't end here, when you're gone
Every soul is filled with light
It never ends, if I'm right

Our love can even reach, across-
Eternity.. I believe.. ohh, I believe.

Forever, you're a part of me
Forever, in the heart of me
I will hold you even longer
If I can..

Oh, the people who don't see the most
See that I, believe in ghosts
If that makes me crazy, then I am
Cuz I believe.. ohh, I believe..

There are more than angels watching
Over me.. I believe.. ohh, I believe.


Every now and then
Soft as breath upon my skin
I feel you, come back again..
And I believe..

I don’t need signs from Cole to know he is around me.  He lives on in his brother… that much I am very certain of.  And anyone who’s met Cameron will likely agree that there is something just wonderfully magnetic about him.  His teachers tell us that, his friend’s parents tell us that, people from church tell us that.  He draws people to him and I truly believe it is very much because of Cole.  But I also don’t need signs from Cole to know that he is here with me because he is forever a part of me.  He’ll never leave my heart and it’s his gentle nudges that bring me to reach out, to step outside my comfort zone.  It’s my experience being his mom that pushes me to seek out other TTTS loss families and offer words of comfort and of hope. I do feel his soft touches on my skin at times…the feel of tears on my cheeks as I wish he was here so badly at times…that’s him, he just wants me to know he misses me too.  The butterflies, gold finches and falling leaves directly on the path of my walks or runs when I am thinking of him, of Jesus, of my faith the most… that is his breath upon my skin.  I believe…oh I believe.

But most of all I believe that God had a plan for each of us, a reason why we took this journey of life, of loss, of life after loss.  For Cole it was to go to Heaven before he ever experienced pain, suffering, rejection, teasing, bullying, failure, jealousy or hurt.  For Cole it was to be a positive influence to my life and to others, a motivator of sorts.  For me, it was to search myself for the things I wasn’t doing right…the gifts the Lord gave me that I wasn’t using.  For me it was to use my experiences to help others. For me it was to bring me back to the Lord, to learn that I can’t do it alone, I am His child and I need Him. 

Those things assure me that Cole and I aren’t really apart.  Our bodies have been separated but our souls and our hearts are forever connected. 

Forever, you're a part of me
Forever, in the heart of me
I will hold you even longer
If I can..

Gifts for Christmas Mourning – Love

Before loss I thought I understood what  gift love is, especially the love for a child, for your child.  Before life was fragile,  before I personally experienced how fragile life was I believed I understood what it was to love someone so much it hurts.

And then I was presented with a threat to my unborn children and the intense feelings I had for these babies was beyond anything I’d ever experienced.

We always know we’d do anything for our kids but when presented with the reality the feelings you have are beyond anything you’ve ever experienced.  I will never look at any one of my kids the same way again.  I will never look at the signs of the intensity any parent feels for their child the same way again. 

When it hurts the most I try to remember the only thing my baby knew of this life was true and unconditional love and that’s a beautiful thing.

And I think this is the greatest gift about love that I know, that I have been given.  Cole knew only my love, my unconditional love.  He felt my intense protectiveness, my fear for his life.  He heard my prayers for his life to be spared.  He never experienced anything but love and that is the most beautiful gift ever. 

Gifts for Christmas Mourning – The Gift of a Hug

There is something about physical comfort when your world has been turned upside down.  There is nothing like the gentle touch from someone who cares when one of those moments hit you and you feel overwhelmed by sadness.  There is no feeling like being held up by a big, long hug when you feel like you can’t stand on your own feet any longer, like your grief and sadness has made you weak and you just can’t go on. 

I thought today I would share some of my memories of these type of moments.  Some that are connected to deep sadness but others that came before the deep sadness could arrive.

The day we lost Cole was by far the worst day of my life. It was a Saturday, 12 days before Christmas, and my parents, my brother and his new (and pregnant) wife and my two older boys who were being babysat by them, were on their way to a family Christmas.  Geoff had the horrible job of calling them on their cell phone to tell them that we’d lost one of the babies and weren’t sure how healthy the other one was. 

My parents did what any parents would…dropped what they were doing (which was difficult since they were ¼ of the way to family Christmas with 4 other people in the vehicle) and came to be with me.  I’ll never ever forget them walking into my hospital room.  First my mom, then my dad, both with tears in their eyes and soon sobs as they wrapped me in one of those type of hugs that feels like it will go one forever and that’s ok because you never want it to stop. 

Later that day I had another procedure done to try to save Cameron’s life (and thankfully it worked beautifully).  Geoff was done both emotionally and physically and also has a very weak stomach for big needles.  The procedure done involved a very big needle being put into my stomach and into my uterus…repeatedly.  My parents had a funny discussion about who would come with me, both of them thinking the other should be the one.  In the end, my science loving Dad, came with me for the procedure and provided more of this physical comfort.  He held my hand, he brushed hair out of my face, rubbed my arms and he wiped off my sweaty forehead and the tears off my cheeks. 

The next day we went home and I cried as we drove into town.  How was it possible that only 3 days prior I had left to go to work and a few appointments and now life would never, ever be the same again.  We parked in our driveway and I couldn’t move.  I could not bring myself to walk up the driveway and into the house.  I didn’t have the energy or the ability.  Geoff took my hand and we walked slowly in the door.  Then he held me as I cried knowing that my dreams of each of us walking in with a baby carrier were forever shattered. 

Those are all pretty sad memories but not all of my memories of physical comfort are.  I can remember so many times that I would be feeling sad and missing Cole and Cameron would just instinctively know that Mommy needed a hug.  Just this week at church I was caught in a moment of what if…what if I had four little boys being rowdy, what if I was planning gifts for four little boys.  All of sudden Cam crawled up on my lap and gave me a huge hug and told me he loved me.  Completely random and exactly what I needed.  It doesn’t even have to be a sad moment though where his affection takes me by surprise and makes me smile and just how blessed I am and how much I used to take that kind of stuff for granted.  Sometimes it’s a frustrating time and he suddenly stops me and says ‘Mom, I need a hug’. 

I think a hug, a touch, some form of physical comfort provides a release of something in our bodies, some chemical or something that is like a drug to our heart and soul.  Before we experienced this loss I enjoyed hugs but never seemed tuned in to what a hug can do. Now I know it’s a vital part of my life.  

Gift for Christmas Mourning - New Relationships

I was unsure what to write today. I started thinking about what I normally write about...so often about my faith journey. With thoughts on that I decided I needed to tell about the greatest gift that came from my loss, a relationship with Jesus.

I gave my testimony when I professed my faith and was baptized in Apr 2012. This is an excerpt from it…

After the loss of Cole and the journey I took with Cameron, ultimately a very healthy little boy being born I began to feel God touching my heart.  I was so grateful for Cameron, for all that had been done for us and for the faith of others, the prayers of others, the words of encouragement from spiritual friends.  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 the boys were born... as I planned the service to say goodbye to Cole. I read a book by a woman named Jenny Hander, likely the first person to really influence my faith journey. 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 my place in Heaven was, by no mean, 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 knew nothing about what it meant to come to Christ but I think that was the first day of the rest of my life so to speak….but it was a very slow start, slow growth. As time went on I began to turn to God more in prayer, work through my grief prayerfully and through scripture. Did I mention it was a very slow journey??? I started blogging my journey and exploring how I felt...who I was angry with, the guilt I felt, how hard it was to fully put my trust in God. I shared this blog with others and participated in a few online support groups and slowly...painfully so, my life began to feel like my own, my new normal began to feel like something I could live with. Others, mostly those who I met online or those that read my blog, either supported me or found support in me and I began to feel my strength building but still something, a focus maybe, was missing. 
A crisis in my marriage lead me to growing this faith with my husband which lead me to our church in July 2011.. The very first service we attended the pastor spoke on the first book of James. What a great, but tough, book to hear given where my life had been in the last 2.5 years. I think one of my favourite scriptures is 
James 1:2-42 Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.
and given the trials that we’ve had even since coming to then it seems like one of many perfect scriptures for me to live my life by. Within a few weeks of coming to this church I knew that I was ‘home’…I was where I needed to be and I was ready to make a full commitment to Jesus. I finally truly understood that salvation was I gift I was given not that I had to earn.    I fully gave my life to Jesus in 2011 and was baptized on Easter Sunday 2012. From that point on I found an amazing sense of peace about losing Cole and an amazing sense of purpose for his life and his death. I feel very certain that I needed to experience the joys of twins and the loss of twin dreams, the loss of a child, in order to be able to be who God wants me to be. I have already seen, even prior to coming to Christ fully, that my faith, my certainty that there is a heaven and a great purpose to all things in life, has impacted others who did not know Christ and it has just continued in volumes since then. Since beginning my relationship with Jesus I have just found that I have such a clarity about some the areas of life that I really struggled with and even more so, a sense of assurance of the provisions of God. I feel that God and Cole guide me to share my faith and my support with others who have taken the same ‘twin’ journey we have. The more I began to share the more I discovered that I seemed to have a gift with words that gave comfort, hope and peace to others. I found I had a desire to see change in the world and the courage to things I never dreamed possible.

I fully gave my life to Jesus in 2011 and was baptized on Easter Sunday 2012.