Thursday, December 30, 2010

A New Angel Among Us....

Today I gathered together with many friends to say goodbye to one of God's newest angels. Tonight I've learned that God's angels now include another wee babe as well. I find myself full to the brim with emotion and sadness and I know that it is okay, that I am okay and that this is a good place to go and cry. Not to say I didn't cry today...the largest tears fell as I watched my friend Brian's daughter say goodbye to her wonderful daddy as her mom held her. Yup, it was awful.
Tonight I want to write about my friend Brian, to remember him, to share him with you because, man, did God get an amazing angel and did we ever lose an amazing man.
I think I met Brian in 1995...but I'm not totally sure. We've been friends so long that it's hard to remember where the first time I met him was. I've known him longer than I've known my husband. I know we met at some Junior Farmer function or another (for those reading this who aren't from Ontario or aren't rural farmy folk, Junior Farmers or JF is a rural youth organization that I was very active in for many years...kinda like 4-H or FFA but with older members and, well to be honest, much more alcohol). I got to know Brian over the years as we attended dances and social events when I was a member of another club. I remember our first 'serious' discussion which ironically was a bit about death. If memory serves me correctly, Brian had been in a very serious car accident and one of the passengers had been killed...though I may have this wrong and it might just have been that he was friends with this girl who had died. It was a horrible end to an exchange year for an exchange student at the local highschool... she didn't make it back to Mexico after her exchange was over. I hadn't known this girl and had only heard a bit about the accident. I remember Brian and I talking about it at a campfire after we'd had, oh maybe just a few too many drinks. He wasn't emotional per say but he let me see a side of him that guys don't always show.
After that, it seemed, we always had a few moments for each other at whatever event we might be at. And he almost always asked me (and many other girls too) up for a dance. He loved to dance, to spin you around till you were dizzy. He'd have this big grin on his face and laugh at you and you tried to hold on for dear life.
As time went on I think I actually saw more of him than less. I moved to his area and became a member of his JF club. We attending meetings and events together and watched our kids grow up and play together occasionally. Actually I remember a distinctive parenthood memory....
When Zack was less than 3 months old we were at Brian and Annette's one night. Zack was sleeping in his car seat and Katrina, their 18 mth old (or so) at the time pulled up a stuffed chair beside him and admired him all night long. She even got out her baby and looked after him/her beside our baby. I remember Brian asking me that night how parenthood was going and commenting that it was the greatest thing ever. He was and is so right.
Time went on, we continued to see their family here and there but I got older...and retired from JF. We saw each other around the community a bit, our kids skated together.
And then tragedy struck our family. In a whirlwind of events we met with a crisis, the loss of a child and a second medical crisis all within a few short weeks. And there was Brian's family (his wife, himself, his brother and his sister in law) helping us pick up the pieces. They brought food to the house shortly after Cole passed away. I think we actually came home to food from them one day after an appointment in Toronto and then more food and visits from the girls a number of weeks later.
And when that second medical crisis happened and I found myself back in Toronto again I was pleasantly surprised to find Brian wandering in my hospital room door one evening.
He'd come with another friend of ours... someone from a totally different circle of friends, I wasn't even aware they knew each other until that moment. And as these men, these farmers away from their livelihood for a dairy conference in 'THE BIG CITY' sat in my hospital room I found myself having the most amazing conversation with my friend Brian. You see Peter, our other friend, wasn't overly comfortable with hospitals and he was spending all of his time chatting with Geoff... talking farming, feed programs, sports...anything but what was going on with us, with me, with my boys. But not Brian. No he took a seat at the end of my bed, looked me in the eye and said "And how are you really doing?" And then he listened as I told him what was happening with my boys, no I guess I should say what had already happened to my boys. He listened as I talked about Cole and how I felt. He asked questions about what would happen now, what we planned to do. He told me, more than once, how sorry he was that this had happened to us and how hard it must be for me to be where I was. I remember saying to him that I knew that he hadn't had a walk in the park medically in years past (he had a kidney transplant years prior). He replied "oh that is nothing compared to what you are going through. I can't imagine the pain you are feeling right now, can't imagine what it's like to lose a child...I am so very sorry".
Well tonight I say to Annette, to Katrina, to Cole (his son's name too)...I am so very sorry and I can't imagine the pain you are all going through. Today you said goodbye to an amazing husband, amazing dad, amazing friend. There will be a gap for years to come, a place that no one can fill. My heart aches for you.
And to Brian I say thank you. Thank you for your smiles, your laughter, your zest for life, your determination, your dedication, your love. Thank you for making me feel important at times...without even trying, I'm sure. I will miss seeing your smiling face and will forever remember you. As I said to Annette, there are a great many things this side of Heaven we are not meant to understand and this is one of them. I am sure that you are sitting with my Cole on your knee sharing stories with him...stories of JF adventures with his mom and farm adventures with his dad, of things about this great community that we live in that he didn't get to be a part of and of the things that all great dad's tell kids...the things that you've told Katrina and Cole countless times. My little one needed a good father figure up there...I wish that you were here but glad that you can have that job in Heaven too.
Take care of him for me, give him a hug and tell him his Mommy misses him....
And Cole, you give a hug back to Brian and tell him that everyone here misses him too!
Today, near the end of the funeral they played 'Angels Among Us'. I had planned to comment more on this song but realize I don't need can tell by what I've wrote that Brian was 'an angel among us' already, long before he became one on Sunday. He helped me in one of my darkest hours, he gave to everyone, showed everyone how to live and is in inspiration to all. And now I can only ask that the angels that live amongst us are here to help his family pick up the pieces and find peace.

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

When life held troubled times, and had me down on my knees.
There's always been someone there to come along and comfort me.
A kind word from a stranger, to lend a helping hand.
A phone call from a friend, just to say I understand.

And ain't it kind of funny that at the dark end of the road.
Someone lights the way with just a single ray of hope.

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

They wear so many faces; show up in the strangest places.
To grace us with their mercy, in our time of need.

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

To guide us with the light of love.

Friday, December 24, 2010

Christmas in Heaven

I see the countless Christmas trees
Around the world below,
With tiny lights like heaven's stars
Reflecting in the snow.

...The sight is so spectacular
Please wipe away that tear
For I'm spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs
That people hold so dear
But earthly music can't compare
With the Christmas choir up here.

I have no words to tell you
The joy their voices bring
For it's beyond description
To hear the angels sing.

I know how much you miss me,
Trust God and have no fear
For I'm spending Christmas
With Jesus Christ this year.

I can't tell you of the splendor
Or the peace here in this place.
Can you imagine Christmas
With our Savior, face to face?

May God uplift your spirit
As I tell Him of your love
Then pray for one another
As you lift your eyes above.

Please let your hearts be joyful
And let your spirits sing
For I'm spending Christmas in Heaven
And I'm walking with the King!"

By Wanda Bencke

Merry Christmas Cole! I know that you know how much we all love and miss you. Sometimes it is so hard to think that you have the better life, that you are better off up there than here with us... I guess really it's that it's hard to remember to be happier that you are there than here with me and your family...unwrapping presents, laughing, playing and giving us hugs. But you are, I know it and will try to only allow myself a few moments of wishing you were here giving me a Christmas hug!
Happy Holidays special son, may it be as blessed as the blessings you bestow on us daily!

Monday, December 13, 2010

Things I wish I could forget....

So today is just a truly crappy day. It's been crappy since the moment I woke tears. I hate this day and I am not sure I will ever NOT hate this day. I am very certain that in time this day will have joyful memories...of things we do, of things the boys do or say. But right now it just SUCKS!!! I often hear from people when I say things about Cole and our loss that we are so lucky we have Cameron. And I know this, appreciate this, cherish this. But today the joy of having a surviving twin is so heavily overshadowed by the loss of his twin brother. Even when I think back to that day there aren't really any joyful memories of Cameron that day with the exception of the words 'baby B is alive or baby B seems to be doing okay' but the reality was that he wasn't okay and was very sick and that day was filled with stress, pain, devastation and heartbreak.
I am wishing I could forget these memories, wishing that I only had the memories of the good times in the twin pregnancy or even just the memories up until about 11:00 that day....
It went a bit like this...
The last good memories end with us going over to Sick Kids for a fetal echo. Our porter's name was Claude and he asked if this was our first baby. We explained our situation and that this was baby boys #3 and #4. He laughed and joked that we should keep going and make a baseball team...we laughed back and said no, hockey. Soon we were at the heart specialists office and taken to the ultrasound machine.
The doctor doing the scan asked which side the recipient baby was on and then sucked in his breath sharply. Without looking up at us or stopping he said “This baby has no heartbeat. Your baby has died. I’m sorry, your baby passed away”. And the world crashed around us. All I wanted to do was curl up and cry, all I wanted was to be left alone with Geoff to cry and hold each other. Instead this doctor was all business and after a minute or two he said “I’m very sorry Mrs. Tummers, this should have been checked before you left Mt. Sinai but I still need to scan the other baby... please you need to calm down so I can scan you.” The doctor told us that all seemed fine with the other baby. We asked him what this meant for the other survivor and he said everything should be fine but Dr. Ryan will confirm that. But what about the other baby…what will happen now was my question. And the most devastating (and incorrect answer) was given to me…your body will just absorb him.
And I sobbed and sobbed. Not only was I not going to get to have my twins together, not only was I now the mother of an angel baby, but I was never going to meet my angel, it would be like my baby never existed. He was wrong, this was explained to me later that day but at the time it was the most devastating thing.

Finally after what seemed like an eternity he was done. Geoff had gone and called our families and a few friends and we were left to wait for our porter to come back for us. I remember looking around at this area of Sick Kids and thinking 'if I wasn't so shattered I'd appreciate all they've done to make this place look cool for kids but I really hope I never see it again'. (ironically we ended up in this very spot 4 days later for a fetal MRI on Cameron's brain...I lost it all over again!)
I remember very vividly my parents arriving that day. Oh how we cried. I am so very grateful they were there but wished (and still do)that I didn't have to break their hearts with this horrible news. Learning shortly after they arrived that not only had we lost one of our sons but that the other was shockingly very ill was just about all I could handle. I'll never forget the doctor saying to me that they were doing all they tests on Cameron's brain to 'make sure they weren't saving a very sick baby'.

The second hardest thing, after learning that one of my children was gone to Heaven, actually occurred 2 days later when I had to explain to my two other children that our dreams of twins were shattered, that they now had a brother in Heaven. This is the memory that got me today as I lay in bed this morning. It just broke my heart that day.
I know that in time there will be happier thoughts of this day and that I will be able to cope better with it. I have hope...I didn't lose it that day or in the days that followed. I know that Cole is in an amazing place and that he is the lucky one. He will never live with stress, with illness, with pain, with heartache. I know he lives with loss, I know that he misses us all. But he has God and Jesus to comfort him and he is very aware of what the reasons are for him to be there and us to be here. And as life continues on and I can see those reasons more clearly I am sure that it will be easier for me too. But for now, for today, I am going to cry, I am going to feel a heartwrenching sadness, I am going to wish that life was different. It's just where I am, it's just who I am.
Tomorrow is a new day.

P.S. We placed this angel tree topper on our tree today. We've been trying to come up with a tree topper since shortly after we lost Cole and we thank 'aunt' Diane for this great idea.

P.S.S. For anyone who is worried that I live in a perpetual world of depression and sadness...please know that today (and a good chunk of December) is a pretty crappy time for me but most days really are filled with the joy of raising all of our boys and the miracle that they are. What I post here and on facebook are just minor moments in my world and don't reflect my everyday life. But thanks for your prayers and concerns...they mean so much to me!

Sunday, December 12, 2010

Flooded with Memories, Flooded with Emotions

Two years ago yesterday this journey through TTTS began. Though my emotions for the most part seem to be pretty intact and relatively upbeat, especially when I am around others, I have found myself being very reflective and, in all honesty, I think I am just sitting on the edge of an emotional cliff. Part of me just wants to go over it, get it over with and cry. The other part doesn't want to give in, doesn't want to let myself be in that sad place.
So today I decided that I would try to write about the memories that are flooding my brain and put voice to the emotions that I know I felt two years ago.
December 11th started off like any other work day except this day was filled with a bit more excitement...we were sure we would finally find out the sex of these busy little babies in my womb. I worked out that morning...really just an excuse to get up and go on the computer early in the morning LOL! I even posted on a few places about our hope for the 'sex reveal' that day.
The appointment with Dr. Hancock went drastic increase in weight, heartbeats sounded good. His words about the sex of the babies..."well it's either 2 boys or two girls with 15 foot long penises... sorry I just can't tell". He also said "that some fine looking kids you got in there". Those things stick in my head as does his general demeanor...he was calm and he didn't notice anything wrong or atleast reveal anything to me. He wondered when my next ultrasound was and said it was important that I have them...the answer was that very same day.
I remember my anger at the ultrasound receptionist who told me that my appointment for that day had been rescheduled. I remember being 'assertive' and telling her that I wasn't leaving without one. The ultrasound itself didn't seem overly concerning. I spoke to the tech about the trouble that there seemed to be finding the dividing membrane between the babies but that was really about it. When she told me she needed to have someone else come take a look because she was having troubles with that membrane, I thought nothing of it. It wasn't until the second tech left and came back with a radiology doctor that I suspected something was wrong.
The worse feeling of that whole day was the 20 minutes that I spent in that room with no one coming in to see me...knowing something must be wrong. I remember so vividly when Dr. Hancock walked in. I burst into tears and said "something is wrong with my babies isn't it". The explanation was a bit vague, the solution was to send me to see Dr. Gratton in London the next day. And then basically I was sent out of the hospital and off for home.
I walked maybe 10 feet before I began to cry and shake. I pulled out my cell phone and called Geoff, gulping, crying, stumbling along as I walked, shaking and wondering what was going to happen.
My next call was to my mom and went unanswered. I think my message to her was a bit like this..."mom, it's Jod.... many gulps and breaths..."oh mom, something is wrong with my babies and well... more tears...I need my mommy right now". And a few minutes later MY cell phone rang...not with a call from my mom but from a number I knew to be Stratford General. I needed to return there immediately...I was being sent to Toronto immediately and was to meet Dr. Hancock in labour and delivery right away.
And then I cried...huge gulping, gasping, sobs. I knew that this was so very serious, I knew that I wouldn't be having an easy twin pregnancy anymore.
Other things that stick out in my mind from that day was being admitted to Mt. Sinai. At the admissions desk they printed up bracelets for my babies...twin A and twin B. I told them there was no way my babies would need was far to early for them to be born. I remember waiting for a long time outside of labour and delivery for them to decide where I was going, who was seeing me and what needed to be done. I bleed all over a nurse out there when she but in my IV...funny the things you remember.
The best memory from that night was when our admitting doctor, Dr. Whittle, said these words to us..."well that's Mr. A now let's take a look at Mr. B". A few seconds later I said "did you just say MISTER???". Finally the question was answered...we were having 2 little boys who later that night were named Cameron and Cole.
And this is the last picture I have of them together...the last one of Cole alive....

My memories of two years ago today are a bit fuzzier. I didn't get to eat, didn't sleep much and was so very stressed out. I was given some medication in the early afternoon to prep me for the surgery and it really messed with my exhausted brain.
I do remember very vividly meeting the man who would save our boys, Dr. Greg Ryan. He was very thorough, very reassuring, and very humble. I remember watching our boys in the very lengthy scans I had that day. They were moving around and seemed so healthy. I could feel them kicking, feel their pushes. I could seem them on the screen and I had such high hopes for our future.
I remember parts of the procedure but, to put it mildly, I wasn't the model patient. I had a ton of anxiety and keep falling in and out of a dreamy haze and panicking as I woke up. I remember them showing me the boys on the screen... not an image, not an ultrasound but my boys, alive, inside my womb...moving, hearts beating...ALIVE. Unfortunately I also remember that I couldn't get my eyes to focus on the screen, couldn't find a way to make my brain process those images. This made me so upset and I began to cry. Thankfully, after a bit of sedative, they were able to calm me down and finish.
That procedure experience ended with Dr. Ryan transcribing notes about 15 feet from my bed and we could tell by his tone and his body language that he was very worried about our son, twin A. He came over to tell us that things had progressed rapidly from that morning and that our TTTS was now at stage 4...this meant that Cole now had fluid under his skin and in his abdomen...a lot of fluid in his abdomen. His little heart was working very hard and he was a very sick little boy. But Dr. Ryan seemed optimistic and told us that he would send us for further testing the next day to see what damage had been done to Cole's heart. He also told us of a few complications that had arisen from the surgery that gave us a guarantee of pre-term delivery and hospital bedrest but also told us that we wouldn't worry about that at this point.
And that was that...I returned to my room to finally eat, to talk to Geoff and call everyone to tell them how things had gone and to hold each other and pray.
So many memories, so much hope and optimism, our fate in the hands of medical people we'd never met. Visions of ultrasounds, of babies moving around together.
“Memory is a way of holding on to the things you love, the things you are, the things you never want to lose.” Kevin Arnold.... holding on today sweet boy, holding on...

Wednesday, December 8, 2010

TTTS Awareness Day 2010

So yesterday was World TTTS Awareness Day
This day was created by the founder of the TTTS Foundation as a way to honour her sons who suffered from TTTS, pay tribute to the memory of her son who passed away from it and most of all to raise awareness about the syndromes that can affect identical twins.

Last year we 'participated' in this day...I sent a few messages out and we light candles in honour of our boys both online and here in our house but I wasn't as 'involved' in the TTTS world. It was still so fresh and so hard.
It still is hard and I know that I am going to be reliving a lot of painful memories over the next few days but I am also so... well amazed at all the joy (yes I really said that) that TTTS has brought into my life. This is what we did this year....

First we light a candle for our donor...that would be the adorable little boy checking out the candles. He amazes me each and every day. He overcame such odds and truly is a miracle. I still am not sure how we managed to escape without really any 'harm' to this sweet little boy. I look back now at all he went through and just can't believe he's here, he's fine and he's MINE!!!

Then we light another candle to stand beside the first, a candle for our recipient baby, our sweet son Cole. He did not make it to earth, he did not take his first breath here but he lives on and has given us so many moments that have taken our breath away. I light these candles together because my boys will be together forever in my mind, in my heart and in theirs too. No one can take that 'twin-ness' away from them and forever their lights will shine together.

Interestingly enough, Cameron couldn't stop looking at Cole's candle. He wasn't interested in his own at all but was all eyes for the one we light for his brother.

And then I blew out Cameron's candle for he is the a light here on earth, full of energy and life. He does not need a match to show us all his light. Cole's remained burning for hours as light seems to remind me of him and he seems to come to me in beams of light. The light of his life will burn on forever, he has given me so much.

TTTS took a lot from me but it also gave me a lot. I am a different person, I will never be the same but I don't think my new normal is a bad thing, just different. For those who wish for the old me...I'm sorry, she's not coming back. Hopefully the new me will be someone who can be admired for new qualities. Right now I am pretty proud of some of the things I've done for TTTS and for other families. Yesterday I made public a new project I've been working on with moms from across Canada and I hope this holiday season you will consider donating to this amazing charity that changed my life, the lives of all of my family members and saved the life of my dear sweet miracle Cameron. It's a season of giving...won't you think about giving even just a few dollars.
Thank you!

Thursday, December 2, 2010

Tis the Season...

Tis the season…. And for so many, unfortunately, it is a season filled with mixed emotions, sadness and depression. Holidays always seem to bring about so many emotions when someone you love is in heaven. We join together with family and friends and celebrate the birthday of Jesus, the blessings we have been given and show our love through gift giving, festive meals and gatherings and music and activities. And for those missing someone it becomes just one more reminder of the things that person is missing out on. I know this year will be hard for me. Cameron is now at an age where unwrapping presents is exciting, where lights and decorations produce a look of awe in his sweet face and where new words about the holidays emerge on a daily basis. How sweet it would be to be doing that with two little boys, how cute it would be to dress them the same and put them on Santa’s knee or place them under the tree like the amazing gifts they are. Remembering that he is in a place with the birthday boy, celebrating Jesus’ 2010 birthday, rejoicing at the gifts God has given us and living where there is no pain, suffering, sadness or war is…well it’s hard to keep in mind somedays.
Today I heard this song on my way to work and it brought tears to my eyes at first because the start of it is how I feel at times…and how I know many of my friends feel too….

"Where Are You Christmas"

Where are you Christmas
Why can't I find you
Why have you gone away
Where is the laughter
You used to bring me
Why can't I hear music play

The pain and sadness really does get in the way at times and makes it so hard to find Christmas and it often does feel like it has gone away for all of us. Those who are missing someone special struggle even more to find their way at Christmas, to hear the music, the joy, the laughter and to see the happiness.

My world is changing
I'm rearranging
Does that mean Christmas changes too

The world changes for all of us and the hustle and bustle of getting ready for Christmas seems to get in the way of the holiday itself. December and Christmas have been changed for me in my life a few times…. a loss of a special friend on Christmas Day 19 years ago, another loss of a very sweet little boy in December a few years later….those changed Christmas for me but time helped and I found most of that joy again. Two years ago my world was rocked and shattered in December and I know that Christmas and December will never, ever be the same again.

Where are you Christmas
Do you remember
The one you used to know
I'm not the same one
See what the time's done
Is that why you have let me go

And it is often easy to think the Christmas and it’s joy and excitement has let us go instead of us letting it go. It’s easy to blame others, blame circumstance, even blame God for not being able to enjoy something that once was so very special to us.

Christmas is here
Everywhere, oh
Christmas is here
If you care, oh

If there is love in your heart and your mind
You will feel like Christmas all the time

But no matter has happened, no matter how heartbroken you are and how sad this time of year is, there is love in your heart and your mind. Your loved one misses you and loves you and you love them. I am so very blessed to have had these special people in my life and I feel so honoured to have known all of them, especially Cole. Sadness will come and go but love stays forever.

I feel you Christmas
I know I've found you
You never fade away
The joy of Christmas
Stays here inside us
Fills each and every heart with love

Where are you Christmas
Fill your heart with love

Filling your heart with love, your life with joy and hope and surrounding ourselves with those things and people that really matter will fill you back up with the Christmas spirit all year round. It is not easy, it will always have it’s challenges. But knowing that your angel(s) love you as much as you love them and that so many people here love you, want to help you and miss your angel too will help to bring you joy this holiday season.
Hearing the last part of this song gave me hope and reminded me that I am so very blessed and that my heart is filled with love.

I was going to end my post here but decided to include some ideas below to help others find ways to honour their angel and to include them in their holiday. We have done and are doing a few things to bring Christmas to Cole and the bring Cole to our Christmas. We have made a donation to the hospital where our fetal surgery was performed as part of our teacher gifts to the boys school teachers and we will also make a donation in Cole’s name as a family present to him. Our Christmas card has many different photos on it this year and one of them is one of my mirror shots of Cameron. The year that we lost Cole, 12 days before Christmas, we decided we wanted to have a special angel tree topper for our tree and also placed an ornament on the tree for him. We will continue this tradition each year and hope this year to have his tree topper the way we want it (it is impossible to find ‘boy’ angel tree toppers it seems!). We bought (well Santa brought) a present for Cole last year…. A teddy bear for us to give him hugs….a way to send our hugs to heaven. It matched one we bought for Cameron and we will likely do that this year as well. You may want to buy a toy for a needy child or a piece of equipment (or a toy) for the NICU where your angel passed away or your survivor was after they were born. Lighting candles or perhaps having a special light on your Christmas tree will help to include your loved one this year. Light and it’s projections have always reminded me of Cole…perhaps because I feel he is guiding me and letting his light shine through me. Most of all talk about your angel, share him or her with others…find a way to help others to understand that talking about them helps you to include them in your life.
May the next few weeks be filled with more feelings of joy this holiday season than of sadness .

Tuesday, November 30, 2010

Bursting Bubbles

Did you ever notice that when you feel good about yourself, and if you are reading this because you can relate to grief, have you noticed that when you think you are getting somewhere and doing ‘well’ with your grief, that something (or someone) always seems to burst that bubble so to speak. Sometimes, for me, it is a song, a memory, a picture, a card. Other times, in regards to the ‘someones’ I mentioned, it’s being told to your face or to someone else, that they are worried about you, that you need to move on, that you should consider getting help. There’s nothing like comments like this to make you question yourself, your motives, even your sanity. Having the confidence in yourself to know that you are where YOU want to be, doing what YOU want to be doing…well that isn’t always easy. Nor is expressing that to others.
For me, although I know I have moments of very intense sadness, I also know that I live with a certain amount of Joy and Hope from the knowledge that I have a son living in Heaven. I find peace in that most of the time. It doesn’t mean I don’t miss him or that I don’t have horribly crappy moments. But for the most part I am not crying each day or spending time living in the past and wishing he was here. I do talk about him a lot, I do mention what happened to others, I do talk about Cameron being a twin to many people. I spend a lot of time chatting with other TTTS moms, reading blogs and offering advice. I try to be a support person for those who need it…I try to be there for others the way a few moms who I met online while still pregnant with the boys were there for me but moreover I try to be there for the many families who need support in a way that I, most often, couldn’t find when I was pregnant….if that makes any sense. Those are the ways I cope, those are the things I do to find Hope. I really do feel a strong pull to be a part of this TTTS world, for others, for me and for Cole. My husband said that he thought maybe I was afraid I would forget Cole. I don't think that is true but I think I do feel like others will. Perhaps by seeing the good that can come of this kind of loss, others will find Hope as well. I don't know...I do it because it feels right!!!
Grief is a tricky thing, especially when it comes to the loss of a child. Parents were not put on this earth to bury their kids because along with burying those sweet children they are burying their dreams. You have such hopes and aspirations for your kids from the moment you know of their existence. You can’t just turn those emotions off and you can’t just move on…well not at the pace that some think you should.
I am certain that many people are further ahead in their grief process after two years than I am but there are also a great deal who aren’t. I am sure, though, that it is so hard for our friends and family to see us hurting almost and I know that they have the best of intentions. In dealing with the feelings I have had lately about the coments made about my grieving process I have, once again, done some internet searching and found this article. It is very long and filled with great insight into the loss of a child. I have cut some of the article out but I encourage everyone reading this to connect to the highlighted link and see if you can’t help yourself to understand your grief or the grief of a loved one just a little bit better.

It is frequently said that the grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of them has been ripped away. Bereaved parents indeed do feel that the death of their child is "the ultimate deprivation" (Arnold and Gemma 1994, 40). The grief caused by their child's death is not only painful but profoundly disorienting-children are not supposed to die. These parents are forced to confront an extremely painful and stressful paradox; they are faced with a situation in which they must deal both with the grief caused by their child's death and with their inherent need to continue to live their own lives as fully as possible. Thus, bereaved parents must deal with the contradictory burden of wanting to be free of this overwhelming pain and yet needing it as a reminder of the child who died.

Bereaved parents continue to be parents of the child who died. They will always feel the empty place in their hearts caused by the child's death; they were, and always will be, the loving father and mother of that child. Yet, these parents have to accept that they will never be able to live their lives with or share their love openly with the child. So they must find ways to hold on to the memories.
Grieving parents say that their grief is a lifelong process, a long and painful process..."a process in which [they] try to take and keep some meaning from the loss and life without the [child]" (Arnold and Gemma 1983, 57). After a child's death, parents embark on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. The hope and desire that healing will come eventually is an intense and persistent one for grieving parents.

The child who died is considered a gift to the parents and family, and they are forced to give up that gift. Yet, as parents, they also strive to let their child's life, no matter how short, be seen as a gift to others. These parents seek to find ways to continue to love, honor, and value the lives of their children and continue to make the child's presence known and felt in the lives of family and friends. Bereaved parents often try to live their lives more fully and generously because of this painful experience.

To those outside the family, the composition of the family may seem to change when a child dies. A sibling may become an only child; a younger child may become the oldest or the only child; the middle child may no longer have that title; or the parents may never be able to, or perhaps may choose not to, have another child. Nonetheless, the birth order of the child who died is fixed permanently in the minds and hearts of the parents. Nothing can change the fact that this child is considered a part of the family forever, and the void in the family constellation created by the child's death also remains forever.

All newly bereaved parents must find ways to get through, not over, their grief-to go on with their lives. Each is forced to continue life's journey in an individual manner

• Typical parental reactions to a child's death often involve emotional and physical symptoms such as inability to sleep or a desire to sleep all the time, mood swings, exhaustion, extreme anxiety, headaches, or inability to concentrate. Grieving parents experience emotional and physical peaks and valleys. They may think life finally seems on an even keel and that they are learning to cope when periods of intense sadness overwhelm them, perhaps with even more force. (Experiencing any or all of these reactions does not mean permanent loss of control or inability to recover and are usually part of the grief process.)

• Each bereaved parent must be allowed to mourn in his/her own way and time frame. Each person's grief is unique, even that of family members facing the same loss. Bereaved parents shouldn't expect or try to follow a specific or prescribed pattern for grief or worry if they seem out of synchrony with their partner or other grieving parents.

• Bereaved parents need to know that others may minimize or misunderstand their grief. Many don't understand the power, depth, intensity, or duration of parental grief, especially after the death of a very young child. In some instances, bereaved parents are even ignored because some individuals are not able to deal with the tragedy. They find the thought of a child's death too hard, too Inexplicable, or too threatening. Many simply don't know what to say or do and so don't say or do anything.

Most grieving parents also experience considerable pain on special occasions, such as birthdays, holidays, or the anniversary of the child's death. Parents will need to find ways to cope with these events and should do what feels right for them, not what others think they should do.

Grief is the natural response to any loss. Parents need to be reminded how important it is to process all feelings, thoughts, and emotions in resolving grief. Bereaved parents must look within and be prepared to deal with the past and present. They need to talk about their loss, and the loss must be acknowledged by others. They need to tell others about what happened to their child; they need to talk out and through their thoughts and feelings from the heart, not just from the head. Healing for bereaved parents can begin to occur by acknowledging and sharing their grief.

• Probably the most important step for parents in their grief journey is to allow themselves to heal. Parents need to come to understand that healing doesn't mean forgetting. They need to be good to themselves and absolve themselves from guilt. They should not be afraid to let grief loosen its grip on them when the time comes. Easing away from intense grief may sometimes cause pain, fear, and guilt for a while, but eventually, it usually allows parents to come to a new and more peaceful place in their journey. Allowing grief's place to become a lesser one does not mean abandoning the child who died.

Wednesday, November 24, 2010

Let Your Light Shine

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”----from A Return to Love, by Marianne Williamson.

I just love this quote…doesn’t it just speak to you???
I found it yesterday on an posting from someone who works for the same employer as I do and felt compelled to share it.
I find that so often people do not let their talents shine out or if they do they feel self conscious or sometimes, depending on the talent, ridiculed. This is not what God wanted for us.
It matters not what your talent is but I think this quote spoke to me most about the talents that others share to involve opening up their hearts, their inner most self. Sometimes being open and honest is the hardest talent of all to share. And in sharing your talent for telling your story, opening yourself up, listening to others, giving advice based on your are liberating yourself and helping your journey go forward while at the same time, liberating others!
The same goes for sharing any talent.
So sing to the mountains, dance, paint, run, build, help, share….let your talents show. Praise God for the gifts that are in you!!!

Tuesday, November 16, 2010

Mixed Blessings #2

After the postings I've written over the last few days I wanted to follow up with the other side of the mixed blessings that twin loss gives us. There are sad days for certain but there are so many more happy days, so many days filled with joy, love and peace.
I found a book online that I am working at reading...I've never done this before, read a book online and it's an interesting process. The book is called Awakening from Grief by John E. Welshons.
Admittedly, I haven't made it past the first chapter yet but I wanted to share a few things that I have read so far....

When death comes into our lives we feel devastated. We feel confused. We feel numb. We get angry. Our hearts ache. We feel hopeless.
The healing of these painful emotions comes through rediscovering the love, peace and joy that comes within us – eternally. We can never lose them. No matter how sad, depressed, disappointed, angry or hopeless we feel at the moment, we can never lose love, peace and joy; because love, peace and joy are the essence of who we are. In truth, we are beings of light and what we need when there is darkness in our lives is more light.

When love is the chosen remedy, there is no hurt, no wound, no sadness that cannot be healed.

If we can look at the losses in our lives a little differently, if we can change our perspectives just slightly, we may see that within this experience lie the seeds of a new beginning, a new life, of a deeper experience of love and fulfillment than we ever imagined possible.

I look forward to finding this joy and seeing our loss from this perspective. I am already pretty certain of some seeds that have been planted by Cole and I know, for certain, that my life is so much fuller with him in it in whatever presence he is than it ever would have been without him.

I also found this picture and caption online today....

One becomes two for the sole purpose of becoming one again.

I wonder if all identical twins are like this apple or just those where one twin lives on earth and one in Heaven. Someone once told me that she had it explained to her by a psychologist dealing in the loss of an identical twin that God only created one egg in these type of twins. That egg chose to split but it was always, in his mind, only one egg. Sometimes those two halfs of one whole an live together on earth and be visible by all but other times they need to be put back together again and live as just one person.
Perhaps our twins are just like this apple.... they became two for a short time just so to complete part of a journey but their sole purpose was always to be one again.

Monday, November 15, 2010

Mixed Blessings - Part 1

mixed blessing

something that, although generally favorable or advantageous, has one or more unfavorable or disadvantageous features.

I wrote this post last week and then forgot to post it.... I think it's fitting today given how I was feeling yesterday and really, how I've been feeling in general lately. I am feeling better today, more at peace and definitely less sad. Anyway...

Recently I was reading a blog entry of another TTTS mom who also lost one of her sons. She was writing about ‘how one person can feel so mercifully blessed and so totally gypped all at the same time?’. It was like she was inside my head... hearing the thoughts that I try not to speak because some may seem to think that makes me ungrateful. Okay, maybe that is what I think people think but I know from the responses I get when I say things like this that people do really think I am not counting my blessings.
Trust me, I count them.. all the time. I know that I am so very lucky to have the great family I have, the house I have (heck even the debt I have as it means that some bank thinks I am trustworthy enough to loan money too). I know that for so many reasons Cameron should not have survived as well as he did, or really, even at all. I know this because Dr. Ryan told us, I know this because so very few babes survive what he did with no negative outcome, I know this because the stats on babes remaining in utero after a mothers’s water breaks are so very low.
So tell me why I can’t be happy ALL the time. Why do I have to feel so cheated, so gypped? It really sucks to feel this way. And why, after all this time, don’t I feel better about the whole thing, why am I dreading this lead up to Cole’s angelversary so much. Like Megan, I thought I was doing so much better than last year but time will really tell.
I recently read an article about a woman in the UK who lost one of her twins, actually she had to choose to end the life of one twin as there were so many complications involved for him. She wrote about how hard it is and I found myself really connecting to this article and although it’s long, I decided to cut and paste some of it for you to read... for you information, to let you other twin mom’s raising a lone twin that we are not alone in these feelings and for those who, thankfully, haven’t been in our shoes, understand a bit more... and maybe see that I am not alone in how I think too.

Is he your only child?’ An innocent enough question, but one that always makes me catch my breath. It may be that I’m at our local playgroup, drinking tea and chatting with another mum as our children play together. Do I simply say yes and feel I haven’t done justice to the truth, or do I explain the situation and risk opening up an emotional can of worms? The reality is that our two-year-old son Ezra is our only living child, but he is also a surviving twin. His brother Oscar died shortly before their birth.
When my husband Simon and I found out we were pregnant with non-identical twin boys following fertility treatment, we were ecstatic.But 20 weeks into the pregnancy, we discovered that Oscar had a severe brain condition which meant he was unlikely to survive long after birth, if he didn’t die in the womb. We were told his condition wasn’t caused by his being a twin, but was complicated by it – a singleton would probably have been terminated at 20 weeks and, although traumatic, his loss at that stage would have made it easier for us to mourn and try to move on.
I felt I’d failed them both before they’d even been born. I worried about Ezra’s lone-twin status because I feared it would affect him when he grew older and became aware that he’d had a twin. I worried that he’d feel lonely and bereft, knowing that he should have had a brother. I tried to do everything I could to collate information and joint experiences for him, such as playing the piano for them because I thought that hearing classical music in the womb would help them to feel calm and contented. I also kept a diary while they were still together inside me, telling them about places we’d been together. I wanted Ezra to know that good things happened in my pregnancy (I imagined him one day saying, ‘What did we do when I was in your tummy?’).
But whatever I did, it didn’t feel good enough, because I couldn’t give them a future together.
Oscar died on 10 August 2006 . As anticipated, the procedure led to my waters breaking and just hours later, at 30 weeks and six days, in the early hours of 11 August, our two sons were delivered by caesarean.
As I came round from the general anaesthetic, I was told that Ezra, tiny at three pounds, had been taken to the neonatal intensive care unit. The nurses brought me Oscar, wrapped in the quilt I’d made him, and we lay there together. For those first few hours, Simon and I both felt unexpectedly calm, as we sat in a room with Oscar and were able to marvel at how beautiful he was. Simon says it was like spending time with someone we felt we’d always known. We felt humbled by his presence.
Congratulations cards and gifts poured in for Ezra. Some people mentioned Oscar in Ezra’s birth cards or sent them one each, but most people didn’t mention him at all, no doubt unsure of what to say.
In the meantime, Simon organised both birth and death certificates, and made arrangements for Oscar’s funeral, as well as managing our house renovation and his new mobile-phone business.
People would tell me that I now had ‘twice the love’ for Ezra and that Oscar’s death was ‘for a reason’ or ‘meant to be’ . I now appreciate that they were making real efforts to soften the blow. To the outside world, perhaps it did seem as if I’d ‘won’, because I had at least come out of it with a baby, unlike a mother who has lost a singleton. But it was never ‘buy one, get one free’. We were expecting two babies and we ended up with one – we lost 50 per cent of our children when Oscar died.
Jeanne Kirkwood, my supportive listener at the Tamba bereavement support group, says: ‘When you lose a twin, whether before birth or after, there are terrible dichotomies between loving and grieving, all at the same time. Most people think that if you focus on the joy the grief will go away, but it doesn’t work like that.’
In her book Twins & Multiple Births, Dr Carol Cooper even says that the loss of a twin is ‘harder to bear’ than the loss of a singleton because of the need to care for the surviving twin and carry on with family life while your natural reaction is to mourn – something that has certainly rung true for us. In the weeks and months after the birth, I felt something was missing, that a part of me had died..
We often talk about Oscar and go to his grave. I frequently contemplate how we’ll tell Ezra about his brother, which we will as soon as he’s able to handle the information. I have to trust that we’ll know when the time is right.
When Ezra was about eight months old, I asked Jeanne Kirkwood, ‘Can you ever feel happy again after losing a twin?’ because I felt my joyful days had gone for good. Every good experience was tempered by memories of Oscar.
I remember people saying, ‘Aren’t you lucky you’ve lost all your baby weight,’ and I wanted to say, ‘I’d rather be fat and have them both here!’
‘You will be happy again,’ Jeanne told me. ‘You’ll still feel pain but as time goes by the pain will be surrounded by more joy.’ She also reiterated what other people had said, which was that Ezra would increasingly help us to heal. I remember saying, ‘I’m looking forward to that time because I can’t imagine it.’ Jeanne gave me hope and she turned out to be right. Ezra, who is now two, has been my salvation. He has been like a tornado, sucking me back into real life.
Living with a single twin is truly bittersweet, a constant reminder of what you’ve lost as well as what you’ve gained. When people ask if Ezra’s an only child, I generally tell them about Oscar because he is part of our collective reality.
When Ezra was recently seen by the paediatrician, I told him we felt very lucky because we have a child, and he answered, ‘Yes, but you’ve been very unlucky, too.’ We definitely feel both.
Perhaps that sums up twin loss best of all – good luck and bad luck, all in the same package. The trick is learning to live with the joy and the pain.

It is such a mixed blessing to be the mom of twins…one who survived and one who went to be with God. Learning to live with the pain and the joy is a balancing act but is one that I am trying to find my way to. Mixed blessings are something that, although generally favorable or advantageous, has one or more unfavorable or disadvantageous features. And no matter what slant you put on it, no matter what way you think of it, always and forever the lives of Cameron and Cole and twins like them will be one of mixed blessings.

After I wrote and copied the above post…but before I’d had a chance to post it here I went to church…with my kids at school. I went in with this feeling of anxiety, of anger, or bitterness almost. I know those feelings aren’t productive, I know that they drag me down. But they are part of me and of who I am sometimes. Regardless, I went feeling like that and came out feeling a sense of peace. I felt comforted, almost hugged during mass… and this is tells me that I am accepting my pain more and opening myself up to God more. My fellow TTTS mom reminded me in her blog though that sometimes I have to seek peace, especially when I am feeling the way I am lately but by doing so it means I need to open my heart deep enough to drive me to God's feet. It means I have to knowingly set aside the anxiety and anguish I feel that, despite how sad it makes me also provides me protection because in doing so I can make room for the most honest of pain and sorrow. If I can only open up my heart I can get to the other side and find peace, love and joy.

I thank her for reminding me just how damn hard this journey is at times and that sometimes it is just so much easier to be angry, bitter etc. Opening up that wound is so hard but it needs to be done to make room for the peace, the love, the joy. It will soon be the season to prepare the way for Jesus, for His birth, for the time of celebrating what a wonderful gift God gave each of us in the way of his son, Jesus. God lost his son too, He knows the pain. And I know He’ll help me with it. I know it will hurt before it heals, I know that it will be easier to not push myself to heal but I also know I can do this too.

Sunday, November 14, 2010

How Great Thou Art

Do you know this hymn...hopefully you can hear it playing on my playlist right now. It's one of those ones that around here seems to get played at funerals a lot...but also at joyful moments at church too. Unfortunately for me it's only the funeral thoughts it ever brings forth in my head despite the fact that I LOVE the message of it.

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: "My God, how great Thou art!"

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

We had this very version played at Cole's memorial service and it broke my heart to hear it play. Today we sang it in the very church where we said our formal goodbyes to our sweet son and my heart is just breaking all over again today. Sometimes I wonder if I'll ever get past these moments that shatter me all over again. I'll be brutally honest right now, I am crying so hard I can hardly type. I likely shouldn't even post this but sometimes I just need to get it out. I HATE the lead up to the Dec. 13th... 23 months ago my heart broke, my world crashed around me and I know I'll never, ever be the same again. A new me was born that day and sometimes I miss that old me so damn much!!! I know the new me is a better person, I know that God gave me Cole and this journey for some amazing reasons...some of them have already been realized and I am filled with joy because of them. But I am, sometimes, filled with such a deep sense of sadness too.
I can't figure out why this song is so heartwrenching for me. Maybe for the brutal honesty of it. God is amazing, He is so very great. He has done so many amazing things and creating my sons was one of the best I can think of. My soul sings that He is so great...but my mind just can't always catch up I guess.
Sometimes is so hard to see and sing about how great God is. So many people question His reasons...myself included. And maybe that is the biggest reason why this song brings about such emotion for me... it reminds me that when life gives us our hardest challenges, our biggest crisis and we question our faith most, God has brought us to this point for a purpose, no matter how hard of a journey it is, and He'll see us through to the end.
I know that when Christ comes for me I will be ready, ready to go home, ready to be with God and most of all so very ready to meet my son again.
P.S. As I finished posting this I ended up chatting with this wonderful friend of mine... she's just who I needed to hear from today. She is Tara, the mom of twins Jack Lawrence and Noah COLE....the boys born on the one year anniversary of the day we welcomed Cameron and Cole into this great world that God has given us. The friend that God gave me who needed me and Cole as much as I needed her. She is the first person I could be friends with who has twins and I am so glad I have her in my life. Today she reminded me that moments like this and songs that evoke emotion like this one does are the hugs from Cole that he so wants me to have. Those moments don't just happen...they are the reminders that he is always with me... that he wants a hug from me. She has encouraged me to find a way to send my hugs to find something that is my way to hug him... something to hug or hold when I need to hug him. Or when he sends me these signs that are his way of asking for a hug...when I am missing him the most is when he needs me the most. Thanks Tara!
BTW - Jack and Noah sent their 'auntie Jodie' a lovely charm for my birthday. It reads "Friends are kisses blown to us by angels". An angel brought us together and an angel reminds me each day How Great God is...

Thursday, November 4, 2010

A great quote from an amazing lady!

Wow, 2 days in a row!!! Just a short post today… I saw a few quotes and wanted to share. I’ve been reading a lot of other blogs lately and often see and comment on what I read. I hope that some of what I write about is as worthy to share as what I read and that my blog is worth following for some. I know lots of people read it...I marvel at the stats counter each time I look at it. Please feel free to comment on my posts now and again so I know that people can relate to what I write. If you follow my blog I’d love to know!

“I have been through a lot and I have suffered a great deal. But I have had lots of happy moments, as well. Every moment one lives is different from the other. The good, the bad, hardship, the joy, the tragedy, love, and happiness are all interwoven into one single, indescribable whole that is called life. You cannot separate the good from the bad. And perhaps there is no need to do so, either.” Jacqueline Kennedy Onassis

What an amazing woman she was. Someone that we could all learn from. To survive all that she did, to endure all that she did and not to let it consume her. She was so right…it is life. The sad times, hardships, losses, devastation and the happy, joyful, love filled moments…they all make us who we are. There is no way to separate the good and the bad, there is no need to. It makes you who you are, entwines all the things that make you who you are and calls itself life.
I think I’ve had a pretty good life so far. Sure it’s had it’s ups and downs, it’s joyful moments and it’s tragedies but it is what it is. It was given to me for a reason and is mine. I am sure there are many who think I dwell too often on the tragedies…but maybe that’s just part of who I am too. I don’t live in sorrow, I live in joy but with many reminders of how I came to be who I am.

This one is pretty unrelated but pretty sweet I think and reminds me of just how happy and blessed our angels are to be living in Heaven….

Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy. ~Author Unknown

May you gaze to Heaven tonight and see and feel the happiness shining through those holes knowing that you are loved and have the life that is yours.

Wednesday, November 3, 2010

Wounds and Scars

I’ve been struggling lately with my grief and with sadness. I know that, as the days draw closer and closer to Christmas, as we begin to make lists, shop, plan gatherings….all those things bring us closer and closer to December…a month that I think part of me will hate (oh how I dread using that word) forever.
I’ve been chatting with another TTTS mom a lot lately…well texting would be more like it. She is actually the first TTTS mom that I know I will meet…she lives an hour and a half from me, only 30 minutes from where I work. We had the same medical team, delivered at the same hospital and sadly, like me, she lost her angel before she was able to see his beautiful face.
In the course of our messages I have been sharing some things that have been shared with me and also about why I am feeling so sad lately.
The recent sadness seems to come from memories. I remembered on the weekend about the excitement of the Halloween when I was pregnant with Cole and Cameron. How I wasn’t ‘allowed’ to go with the boys to trick or treat…I handed out candy and then sat with the neighbor and chatted about twins and pregnancy…her daughter has identical twin daughters. I remember thinking about Halloween costumes in the future. I think the biggest thing is that about 2 years ago I finally started feeling excited and so content with what was going to be our ‘twin’ life. I came across my request for medical leave letter that I sent to my principal (a formality) the other day…another moment of heartache and reminders. Sometimes I wish I could turn my brain off, not think of those things, not make myself feel sad. But really, in all honesty, I love that I can, love that I have those memories, love that I find those reminders…they are all that I have of Cole….memories.
So in chatting with this new friend about our sons, especially those in Heaven, I have been talking about something that was once shared with me about grief and most especially about loss of a child.
Understand your loss is a huge wound right now but it will heal... it might be red and ugly and painful at first but over time it starts to fade and smooth out and become less painful but it leaves a scar that never goes away and forever changes you and it is up to you how it will change you. You will always be the mother of twins.
For me I have taken this to mean that my wound, now, has healed over a lot. It is still very visible but isn’t always so painful. I also know that sometimes it takes nothing more than a slight bump, scrap or twist and my scar opens up again….never to the open wound it once was but still to a weeping, painful and red sore. Thankfully it never takes as long to heal over again.
In looking online for the quote (which I actually found in a message my friend Tammy from Fetal Hope posted to another mom) I came across this…
In Revelation 12:11, John wrote, “They overcame him (Satan) by the blood of the Lamb and by the word of their testimony.” Our personal stories, like the blood of the Lamb, have incredible power.
Perhaps you’ve never thought of the wounds in your life as potential treasures. I encourage you to dig a little deeper, push aside the dirt, and discover the jewels that lie beneath the surface. Like sparkling diamonds, glistening rubies, and shimmering emeralds, our scars are beautiful to God. They help others see Jesus in us.
Scars? We’ve all got them. It’s how we view them that will change our hearts. It’s what we choose to do with them that can change the world.

And WOW…I just marveled at that. That by sharing my scar with others, by telling others about my journey with Cole and Cameron and how that has brought me closer to God, I can help overcome Satan, I can help to change the world for someone… I can make a difference in the world.
God does think this scar is beautiful, He knows what it has brought me…the pain, the heartache, the confusion, the sadness, the isolation….and the Hope, the Joy, the Peace, the knowledge, the acceptance, the compassion, the empathy and the Love. He knows that some days are hard, He knows that I don’t understand or always accept, He knows I get angry. But He also knows that if He brought me to it, He’ll bring me through it.
I think I most wanted to share this with you all, both those readers of my blog who’ve lost a child or children, a twin or twins and those who haven’t because for those that have, it’s a great analogy and may be something you very much identify with. But for those who haven’t been in my shoes, in our shoes, I hope that you can understand my scar, appreciate my scar and help me to bandage it up and care for it when it opens up occasionally….I’d really appreciate it!

Tuesday, October 19, 2010

Beautiful People

I found this quote and it touched a cord so I decided to share it and comment on it.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

--- Elisabeth Kubler-Ross

I think, so often, those who have lost a loved one, suffered tragedy, survived a crisis, endured a chronic illness and simply struggled to find their way through a very tough situation are of two mindsets or maybe more so, respond one of two ways. Perhaps the analogy of ‘whatever doesn’t kill you makes you stronger’ would most suit here.
Loss and tragedy can often run and control your life. It can make you hard, cynical and so very angry. Those feelings, most likely, occur for everyone at some point in the grief process. In highschool, as many who know me will remember, I lost a very dear friend, a boyfriend in fact, to leukemia. I had been touched by the loss of young people before….not many who grew up in our area of rural Ontario seemed to be immune to it as it just seemed like each year a student or two were killed in accidents in our community. But this was different, this was so heartbreaking to me. It wasn’t that I hadn’t known it could happen but it still caught me by surprise and was the first time my faith was tested. I became very angry and very bitter. I became pretty attention seeking too. And in time, I mellowed, I grieved and I accepted.
With Cole it was different. Initially I wasn’t angry, bitter or cynical. I was lost, I was sad, I was devastated but I was not angry with God. That came in it’s own time though really, I would have to admit, it did not own me. I did feel a very strong sense of being lost, of not knowing how to cope with my feelings , of not being able to find my way out of the grief. At times I still feel that I am still very strongly embraced by grief.
But mostly I feel that I am like so many of the wonderful new friends that I have, those other parents who have lost a child or children in later pregnancy or in infancy, most especially to TTTS. I feel what so many of the people I have met are so inspiring as they have become so full of compassion and love and have grown so much by knowing the despair, the heartbreak and have struggled to find their way back to life after losing their child. They have learned to appreciate life, to embrace and to cherish each moment. So many people have been there for me on horribly sad days. So many of them have reached out to others to let them know that someone cares. They are full of compassion and understanding, they are my dearest friends at times.
They are beautiful people who didn’t just happen.

Friday, October 15, 2010

International Pregnancy and Infant Loss Awareness Day

In honour of International Pregnancy and Infant Loss Awareness Day, Oct. 15th. I am posting this amazing song. … I will warn you…today’s post will likely be one that you need the Kleenex for….

music & lyrics: Gerrit Hofsink

I've been waiting for you
For such a long time
You're always on my mind

And I'm lying awake
Most of the night
Waiting to hold you tight

Now that I do
And look at you
My heart is breaking
This can't be true

Lost you before I found you
Gone before you came
But I love you just the same
Missed you before I met you
On earth we never can
But in heaven we'll meet again

Close to my soul
Close to my heart
Right from the start

Lost in time
Lost in space
Can't wait to see your face

Now that I do
And look at you
My heart is breaking
I know it's true

Lost you before I found you
Gone before you came
But I love you just the same
Missed you before I met you
On earth we never can
But in heaven we'll meet again

Sometimes I find myself wondering what to do
With this pain that I’m going through
But I know one day, God will take me away
And I’m coming home to you

And when I do
And look at you
My heart is healing
I know it’s true

Lost you before I found you
Gone before you came
But I love you just the same
Missed you before I met you
On earth we never can
But in heaven we'll meet again

In Heaven we’ll meet again.

I ask that today you light a candle and participate in the international wave of light campaign to remember all babies lost in pregnancy through miscarriage or stillbirth or the loss of infants at or just after birth. I ask you to light this candle in memory of Cole. We miss him so much each day…but especially today when it’s a day to remember these special angels.
I love this song, I love the message it leaves. I am feeling so lost today, I miss Cole so much. I know that I will see his face again, really, I guess I see it each day.
Oh Cole… I am so lucky to know what you look like wee one but sometimes I think that just makes it that much harder. I lost you before you ever had a moment to take your first breath but you have given me so many moments that have taken my breath away. We did not meet on earth, I did not see your eyes wide open, your mouth smiling, I did not smell your sweet baby smell or touch your soft baby skin. My heart was broken when I learned you had left us before you we found you. But you are with me always and I know that you are waiting for me at Heaven’s Gate…I will be there and we will be together again. I will love you just the same as I love all of your brothers. For now I hold your brothers near and dear and pray that you will watch over us all and guide us through life till we all meet again.

Wednesday, October 6, 2010

Making a Difference

Sometimes when you are down, when you feel like no one notices what you do, when the world seems to be crapping all over you a reminder is needed....

The Starfish Story
adapted from The Star Thrower
by Loren Eiseley (1907 - 1977)

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

I've been reminded lately by a few wonderful people about the differences I make...especially in the world of TTTS. My first remniders came in the last 10 days or so as 4-5 online friends sent me messages of thanks, of requests for support, of words of encouragement after I made the latest 'twin video'. I also had a request for support and connections for a new TTTS mom from right here in my area. She had the same medical team that I did and one of the doctors that I have remained friends with approached me to offer support. It really amazes me to see the difference I can make... I just do it and think nothing of it. It doesn't seem like much to me, though I am sure that when I am on the computer (too much) it seems like a lot to my family. But it is a way to help keep our son Cole's memory alive, and it pays tribute to his twin brother, Cameron.
But even more of a sign of the difference I can make can be found in this story
and this wonderful idea that my new friends whio work in fundraising for the foundation at Mt. Sinai Hospital in Toronto came up with. I am the first person to use the 'service' and am so proud to feel Cole working through me to keep his memory help all families struggling with pregnancy complications. With any luck Cole will not be welcoming too many more angels to Heaven as with this money, this support, Dr. Ryan and his team will save more and more wee lives.

Tuesday, October 5, 2010

The Moments that Take our Breath Away

Today started out kind of like the weather...miserable, cold, achey and grey. I was tired and grumpy and full of negativity. Moments like these seem to make everything, everyone seem to be against me...and I hate it. I hate jealousy and wishful thinking...I hate wanting the things I don't have and I hate wishing I was somoeone else. It always seems in moments like this that I feel the ache of losing Cole over and over...I relive it, I often tear up....I just go backwards so far.
So as I am driving along on my way to work, feeling down and sorry for myself this song plays on the radio and I almost stopped the car. I have heard it before, even thought about sharing it here but today it just hit was just what I needed to hear....

The Breath You Take"

He looks up from second base, dad's up in the stands
He saw the hit, the run, the slide, there ain't no bigger fan
In the parking lot after the game
He said, "Dad, I thought you had a plane to catch?"
He smiled and said, "Yeah, son, I did"

But life's not the breath you take, the breathing in and out
That gets you through the day, ain't what it's all about
You just might miss the point trying to win the race
Life's not the breaths you take but the moments that take your breath away

Fast forward fifteen years and a thousand miles away
Boy's built a life, he's got a wife and a baby due today
He hears a voice saying, "I made it son"
Says, "I told you dad, you didn't have to come"
He smiles and says, "Yeah, I know you did"

But life's not the breath you take, the breathing in and out
That gets you through the day, ain't what it's all about
You just might miss the point trying to win the race
Life's not the breaths you take but the moments that take your breath away

Just like it took my breath when she was born
Just like it took my breath away when dad took his last that morn

Life's not the breath you take, the breathing in and out
That gets you through the day, ain't what it's all about
Just might miss the point if you don't slow down the pace
Life's not the breaths you take but the moments that take your breath away

Life isn't about the breaths we take...breathing in and out takes no effort, requires no thought and is the easiest thing to do. Being able to breath is great, getting through the day easily...wonderful. But it doesn't make a life. Struggling to breath I guess doesn't make a life either but it sure makes you appreciate what effort it takes to breath. And worrying about how to take those breaths only distracts you from the amazing things in your life. We seem to get so caught up in runnning our lives, in breathing each day, that we forget about what makes a life... the moments that take your breath away...
the first time someone you are in love with tells you they love you
the words will you marry me and I do
the +'ve sign on pregnancy test
the sound of your baby's first cry
first steps, first words, hugs, kisses etc.
the words, for me, 'there's two babbies in there' there was a moment that took my breath away
seeing my babies (all 4 of them at different points) on! But even more so watching Cameron and Cole bump into each other, kick each other, hug each other....breathless

Those are all moments I've had that have taken my breath away. Like George Strait, I also had my breath taken away with the loss of a loved one. For sure one of the moments that left me breathless was with the news that Cole was gone... I was devastated and shocked and found it very hard to breath. But it still didn't compare with the breathlessness that I had at the announcement of his existence. Even now when I think of those days my breath gets caught in my throat.
When I think of the first time I held my very first, what a breathless moment.
With Brycen breathless moments have always come with words...he says so many adorable things. Some (I love you as big as the sky mom) are filled with joy and others steal my breath as they bring tears to my eyes (mom I miss Cole so much, can't we just go to Heaven and bring him back?).
And Cameron, he has made me breathless from day one. I knew, from the moment I suspected I was pregnant that this baby (babies) was different. I am breathless so much of time when I am around him, he shows me daily what miracles are. His hugs, his love, his joy, his excitement.... the life he seems to live that is full of the life, energy and love of two little boys....breathless!
I hope your life leaves you breathless!

Saturday, September 25, 2010


I have heard this song so many times...most often on youtube video's of TTTS survivors and angels. I decided to look up the words today and share them. I'd hoped to put the song in my playlist but couldn't.
Amazing - Janelle

The morning cold and raining,
dark before the dawn could come
How long in twilight waiting
longing for the rising sun
ohoh ohoh Oh ooh

You came like crashing thunder
breaking through these walls of stone
You came with wide eyed wonder
into all this great unknown
ohoh ohoh Ohoooh Oohh

Hush now don't you be afraid
I promise you I'll always stay
I'll never be that far away
I'm right here with you

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are

You came from heaven shining
Breath of God still flows from fresh on you
The beating heart inside me
Crumbled at this one so new
ohoh ohoh Oooh ooohhh

No matter where or how far you wander
For a thousand years or longer
I will always be there for you
Right here with you

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...

I hope your tears are few and fast
I hope your dreams come true at last
I hope you find love that goes on and on and on and on and on
I hope you wish on every star
I hope you never fall too far
I hope this world can see how wonderful you are

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing...

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are

It's just such a beautiful and heartfelt song from a mother to her child...or children...especially those who've been on one heck of a journey like so many I know have been.
All of my children amaze me...for so many wonderful reasons.
But I'll be honest, Cameron and Cole will always be the children who amaze me the most. Their conception amazed me (okay it surprised me too!!!)...twins amaze me but ones conceived by the same egg and sperm...splitting perfectly and forming two identical, that amazes me. The situation that occurred within my placenta was such a crappy thing and yet they survived it with no signs of any troubles for 21 amazing weeks...that is so awesome. When it did rear it's ugly head it was quick and vicious and the outcome was horrible yet both the boys amazed me. Cameron amazed me because he survived. He defied the odds... Dr. Ryan pretty much told us have no affects from the TTTS at the time of diagnosis at all...pretty amazing. Then he went on to amaze us by surviving the anemia and blood transfusion with no issues either. He also survived my water breaking at 26 weeks (known as pPROM) and went on to amaze us with his health and continued growth for another 8 weeks. And best of all he amazed us by arriving healthy with no concerns and an amazing spirit...such a little wonder he is. He is so full of life and happiness, full of energy and mischief. Perhaps he is two little boys in one little body???
But he's not the only amazing one....Cole...well I think he's even more amazing. He hid all his medical issues from us until it was safer to do the surgery...safer for Cameron not for him. He left us when it was safe to leave and then he went on to keep us safe for the next 11 weeks...and beyond. There is no medical reasons for all that was going on to not have been more obvious...or rather to have affected him different. He had so little share of the placenta and yet he grew fine, his cord was so far from the placenta that he was barely getting much for nutrients..yet he grew and kicked. He left us on a cold day in December and yet his spirit lives on. He watched over his brother and kept him safe for 11 long weeks...8 of them in a very critical situation. He traveled with him into this world and protected us both. He watched as his brother took his first breaths, cried his first cry and was seen by his loving parents for the first time. He watched over his mom and dad as they cried over him and his silent still body. He knew it wasn't the time to tell us that he was okay, he knew we needed to cry.
He went on to amaze me as I feel him guide me to help support other TTTS families. He inspired us to raise $4000 for the hospital that saved his didn't save him but that didn't matter...he shines like the stars and amazes me with the beauty that is his spirit. He lives on in us all, most especially his twin and has blazed right into my heart....I'll always be here for you sweet baby boys and I know that you, sweet Cole, will always be here for me.
You're so amazing....

Thursday, September 23, 2010

The Butterfly Part 2

I wrote in my last blog entry about butterflies and how the life cycle of a butterfly…well a caterpillar really… is so similar to the journey I feel I’ve taken with the loss of Cole. That story of the journey of the caterpillar and the changes it made to become the beautiful and pure butterfly also makes me think of Cole’s journey. In a sense he was that caterpillar….hidden away inside of me with his twin brother, slowly growing and changing but still a caterpillar. Suddenly he began his chrysalis stage...before any of us were ready for it to happen. I didn’t want him to become a butterfly. I dreaded his arrival for it meant that I no longer held him with me. But I couldn’t stop his journey or change his ending…it was his, not mine. And when he was born we were left with the physical reminders of his caterpillar self but his spirit….now that was a butterfly!

And so the butterfly, in and of itself, does not just speak to me about coming out of despair to become something better but also of beauty, of life and of hope. Butterflies are a symbol of the loss of a baby (incidentally I had a butterfly on my door at St. Joe’s after Cameron and Cole were born and Cameron had one on his isolette and while in postpartum and the NICU we saw 3 more butterflies) but I was never totally sure why. So once again I turned to the internet and found this poem…....
The Butterfly
He had her there, resting on the palm of his hand for a while.
She was all he ever wanted.
Sometimes her wings were closed.

At other times, she spread her wings open in the bright sunshine,
displaying her colourful patterns.
He truly loved her.
She knew that.

He told her she was special and beautiful, he saw the beauty.
He appreciated her true colours.
But he couldn't keep her.
He knew that.

She was born to fly.

She had been beautiful in his hand, but in flight she soared.
In the garden amongst the colourful, sweet-fragranced flowers.
Her habitat.

In letting her go, he made her happy.
But she was always to remember his warmth and his love.
Always and forever.
For all of eternity.

And I thought, WOW… this leaves me with so much happiness, so much joy and so much Hope. My son will always remember the love I had for him and how well I looked after him. And I will remember the joy I felt to be pregnant with him, how special and beautiful he was each time I saw his tiny body moving around inside of at the countless ultrasounds I had. But he was born to fly, to soar above us all and guide us in our lives. I couldn’t keep him no matter how much I wanted to, he was too perfect for this world, he had a greater job. It was never a job I would have asked God for, never what I wanted for him. But I am so honoured to have MY son doing that job. I think part of me will always wish that he could have stayed but I feel so lucky to have seen his spirit, his movements, his life and his love. He gives me great hope….

A Symbol of Hope
A butterfly lights beside us like a sunbeam
And for a brief moment its glory
and beauty belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it.

And somedays it is harder to remember that hope, harder to feel so lucky to have seen his spirit. Somedays are still full of sadness and despair…I won’t lie to you and pretend that it’s easy, that I’ve moved on and only see the positives. But I am learning that I have to not look for the mission and the purpose…I don’t have to have the answers to the whys. I need to be still and know that he is with me, that God is with me. The stiller I am, the closer I feel to him and in all honesty the happier I am.

"Happiness is like a butterfly, which when pursued, is always just beyond your grasp, but which if you sit down quietly, may alight upon you."