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 .