Saturday, September 25, 2010

Amazing

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

[Chorus]
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

[Chorus]
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

[Chorus]
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 beings...wow, 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 that...to 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 brother...it 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.
Motionless.

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.
Free.

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."

Tuesday, September 21, 2010

The Butterfly Story Part 1




At church on Sunday our guest minister spoke about the journey of a butterfly (admittedly she had the most annoying voice, pronouncing it Bu-ter.....fly so I may have drifted in and out a bit). She began with this quote

“What the caterpillar calls the end of the world, the master calls a butterfly.”

--Richard Bach, Illusion

I pondered this a lot that day and felt compelled to research this quote and do some reading on it. I've decided to share some of what I found..... forgive me, it is a long story but the message is amazing....

The Butterfly Story - Carol Lynn Pearson

I sat reading in my garden, hoping the few last flowers would soften the stories in my newspaper: war, famine, drought, economic collapse, the dark promises of history.

“Choose a different promise.”

I looked around. Nothing moved but a butterfly, and I know butterflies can’t talk.


“Of course we can’t,” said the butterfly, all shades of gold, landing on a nearby leaf. “But your soul can. ‘Soul’ and ‘butterfly,’ are the same word in Greek. Look at me and listen to your soul.”



Weird. But less horrible than the words printed on the dead leaves of trees that rustled in my lap. “Okay,” I said, “what’s the promise?”

“Your past is the caterpillar, your future is the butterfly.”

“Mine?”



“All of you. The world.”

“How so?”



“When I was a worm, I thought as a worm, and I gorged myself, eating everything in sight, leaving a path of destruction, getting fatter and fatter.”

“We’ve been doing that, for sure!”

“Then I went into my chrysalis stage–darkness, destruction, everything falling apart.”

“Us too!” I slapped the newspaper. “War, famine, plague, banks going broke!”

“My caterpillar self thought it was the end of the world!”

“The end of the world,” I nodded. “Yep, that’s what it feels like.”

“But what the caterpillar calls the end of the world, the Master calls a butterfly!”

“Wow! That’s–really nice!”

“I didn’t make it up. One of you did. One of your imaginal cells.”

“Our--what cells?”



“Listen carefully,” said the butterfly. “When the breakdown inside the chrysalis is finished and the caterpillar is nothing but ooze...”

“Gross!”

“...An amazing process begins. The genetic code shifts. Special cells–brand new cells–seem to come out of nowhere. Scientists call them ‘imaginal cells.’”

“Do they imagine?”

“They do. They hold the vision of a new creature. The old cells see these new ones as enemies and try to kill them.”

“Like we kill our visionaries?–Jesus–Ghandi–Martin Luther King, Jr....”

“Very much like. The old cells are frightened and want to maintain the old caterpillar order. But their day is done. New imaginal cells keep popping up inside the chrysalis--here, there, everywhere. Each holds a piece of the new vision. They begin to communicate.”

“Wow!”

“When there are enough of them, when there’s a kind of ‘tipping point,’ all the imaginal cells unite into a grand butterfly design. Each cell gives its small vision into the large vision–and a new thing is born. A butterfly!”



I studied the gorgeous creature on the leaf before me. Impossibly beautiful, iridescent, magical. “We–can do that?” I asked, nearly breathless.

“It’s in process now.”

“But everything I see...” I pointed again to the newspaper.

“Don’t believe everything you see. Old caterpillar cells terrified of their end. Don’t fight them. Outshine them.”

“How do I become one of those–imaginal cells?”

“You choose to. And you realize you have chosen to when you find yourself not only recycling the newspaper but recycling the news. Create a new ending to each terrible story you read and hold that ending in your heart. Choose one or two of the terrible stories and find something you can do to bring about that new ending, alone or with others. Today on earth huge networks of imaginal cells talk to each other as fast as their fingers can go. They meet in neighborhoods. They fly across oceans and hold conferences. Alone and together they magnify the vision.”



“But what do I do?”

“Mostly just be kind. See everyone as the same kind. Do not ‘unkind’ anyone.”

“Even those who are not kind to me?”

“Especially those. See them as the brilliant imaginal cells they might be.”

“Isn’t there, like, a checklist or something?”

“Go inside your own mind and listen.
The butterfly lifted her wings, fluttered friendly for a moment, then was gone.




The story, as I found it online, was about changing the world...be more responsible for the world around you etc. But that wasn't what spoke to me. What spoke to me was about how the world can seem so dark sometimes...so full of despair and regrets. How you can feel like there is no end in sight, that everyone is against you, that no one understands.
The loss of a child makes this so easy to happen....makes it so easy to lose one's self. Darkness and despair surrounded me at times after we lost Cole. For months I put on a front, no one really knew how broken my heart was inside.
My chrysalis stage lasted a long time....and truthfully I am not always sure that my butterfly is completely out of the cacoon. Some days those old caterpillar cells seem to try so hard to kill my butterfly self.
But all in all I do feel renewed, reborn. I am so very blessed and know that I have become so much by losing my son. I love that I am someone people feel they can turn to for help with TTTS, twin issues...even prematurity. I love that God has given me the gift to listen and share experiences in a way the spreads Hope.
I thank God everyday for my butterfly.

Sunday, September 19, 2010

The Dance We Shared

Today I remember the most amazing day...the day I heard the words "There's two babies in there". It began the most amazing journey...a journey of hope, of love and of miracles. This journey has been one with many bumps in the road and I'm sure they will continue. With God above us and angel Cole watching out for us I am sure that we will make it and the journey will not end until I wrap that sweet baby in my arms at Heaven's gate.
Here is a video tribute that I made for my sweet boys.... video

Wednesday, September 15, 2010

An Angel Never Dies

I found this poem on a blog I happened to find one day in a search for something on hope and loss. I wanted to share it with you all…those of you who’ve found me and my blog because you understand so much how much it hurts to lose a child before you met them, those of you who did met your child alive but had to do the heartwrenching act of saying goodbye to your child and those of you who know me, who watched me struggle…who watch me struggle…..

An Angel Never Dies

Don't let them say I wasn't born,
That something stopped my heart.
I felt each tender squeeze you gave,
I've loved you from the start.

Although my body you can't hold
It doesn't mean I'm gone.
This world was worthy, not of me.
God chose that I move on.

I know the pain that drowns your soul,
What you are forced to face.
You have my word, I'll fill your arms,
Someday we will embrace.

You'll hear that it was meant to be,
God doesn't make mistakes.
But that won't soften your worst blow,
Or make your heart not ache.

I'm watching over all you do,
Even in this pain you bear.
Believe me when I say to you
That I am always there.

There will come a time, I promise you,
When you will hold my hand,
Stroke my face and kiss my lips,
And then you'll understand.

Although I've never breathed your air,
Or gazed into your eyes
That doesn't mean I never was,
An Angel never dies.
Brings tears doesn’t it? Not all tears of sadness though…many tears of hope.
I feel the need to comment on this poem as it speaks so loudly to me. I really feel that people did not (maybe do not) think that our loss was as significant as the loss of a baby who was born alive and died at birth or later. We saw that in the reactions of others….the lack of sympathy cards and gestures of sympathy normally attributed to the loss of a loved one, the people who we thought would come to our memorial service for Cole and didn’t, the gestures from neighbours that normally go with loss that didn’t come our way.
I don’t mention those things because I am bitter or angry… still hurt maybe a little but mostly I think stillbirth is just an area where people just do not know how to react. And in my heart I will always wish that if I had to say goodbye, if I had to send him to God, could I not have been able to do it while his little heart was still beating, when he as able to look at me and I at him. Ah….. If wishes were fishes!!!
But mostly this poem speaks so strongly to me as the voice of Cole. I know he lives on…I make sure of it. We speak his name daily, I speak to him often. I will never let his memory die, will never allow myself to move on to a place where he is no longer a part of my thoughts, prayers and actions. He is a part of my life as much as my other children. I honour him, I love him and I miss him terribly. I know that he misses me too, I know that he loves me too.
I often wonder what it will be like when I reach Heaven’s gate and he’s there to greet me. Will he be full grown or will he remain a baby until his mommy is there to hold him and raise him up to be the beautiful person that his twin is here on earth? I do not doubt for a minute that I will recognize him instantly and that he will rush to meet me too. I also know, without a doubt, that I will understand when I see him again, when I reach Heaven, why this is the journey that God has placed us on.
I will always cherish the moments I had with him…the kicks and hits, rolls and punches, the amazing ultrasounds, the countless times I told people that I was pregnant with twins and the amazement that brought forth. And I am so glad that I found this poem as I sometimes need reminders that ‘Although he never breathed our air or gazed into our eyes, that doesn't mean he never was for an Angel never dies.’

Tuesday, September 14, 2010

Where I am these days....

My blogging fingers are itchy again and though I likely should spend the few spare moments I seem to have these days now that I am back to work doing something more productive (like catching up with facebook friends LOL!!!) I decided that I really need to start writing again…especially given the state of my mind lately.
There’s been some changes in things around our house in the last few weeks that have caused me a lot of stress. I find when I am stressed then I grieve harder and cope less. I find I relive the loss of Cole over and over and am so much more negative about the whole experience. I know that it is ‘normal’ but it doesn’t always feel healthy to me.
The boys and I spent some time in the backyard last weekend and I found myself drawn to Cole and his garden. I stood looking at his ‘headstone’ and the angels in his garden and found myself weeping. I could hear the boys on the swing set behind me laughing and having a great time and I found no comfort in that…only the reminder of what could have been and just how much I miss my son. I started to write ‘what should have been’ and instantly stopped typing for I realized that it isn’t the right word and deep in my heart I don’t think I’ve ever believed, after we lost Cole, that having Cole here is what should have been. It hurts to say that at times but in my heart I do truly feel that this is what God had planned for me. It may not have been the way He planned it to be, I do not believe He wanted to hurt me or see me struggle. But He did want me to grow stronger, to love better and to see the world with different eyes.
I am sure that in easier times I will be able to see those plans of God’s with clearer, less tear filled eyes. But He understands that too…He knows that this is so very hard and He knows that in times of struggle I will turn to Him. He knows He can save me.
Earlier in the weekend…even yesterday…I struggled with ‘why is this happening to me and to us…why is God bringing us this stress, these trials, when He knows that we are just getting back on our feet???’ I had no answers for that but wasn’t filled with a huge amount of frustration over them either. I was just very confused. And I felt such feelings of jealousy for what others around me have… beautiful homes, beautiful things, no budget restraints on buying things…even calm and peaceful relationships with others, especially their spouse and with this the jealousy for the ease in which others ‘seem’ to be able to live their lives.
But last night things came to a head (once again) in our house. Tempers flew, words were exchanged, tears were shed. I retreated out of frustration and anger and really felt alone and ready to blow. And then suddenly a sense of clarity overcame me….I realized that it isn’t about the why’s but rather about the how’s. It isn’t about why things happen but rather about how we deal with them. And most of all WHO we deal with them with. Things will and do work out…I’ve learned that as have many of you I’m sure. Getting caught up in why keeps you from seeing what is in front of you, keeps you from appreciating all that you do have. I have a husband who does tons of housework, can cook, can clean and knows what to do around the house. I have 4 amazing children. Only three of them may live in my home but they all live in my heart and have all taught me so much about life. I have a home…it might be mortgaged but it’s mine…I don’t pay rent. I have friends and family who love me for me. We both have jobs…mine is one that I love. Job struggles are apart of Geoff’s life it seems. I hate that but I have come to accept it for what it is….WE have to accept it for what it is. We always get through it, we always survive.
And last night we decided that we need to find a way to celebrate all of these gifts from God together. We need to join together to praise Him, we need to honour him together and most of all we need to pray together and study the bible, His love and His Hope for us together.
To some reading this it may seem like a given or maybe even a shock that we don’t already do this as I write frequently about my faith and my feelings about God. But Geoff and I don’t share this, not usually. We came to the conclusion last night that it’s not just a good idea, it’s a necessity…something has to change in the way we communicate, interact and raise our family and we are both hoping that by being a more faithful Christian family that it will be easier. Actually I don’t think we hope that…we KNOW that.
So as my heart aches for my son and the wishes I had and have for my family I am full of Hope and am praying for guidance and support of a wonderful God….and hopefully some amazing friends who might have some great resources for us to work on this together. And as I work on this I am sure that I will write more…I can almost promise this. I know that I will be writing more about coping with loss and dealing with ‘twin’ issues, stillborn baby issues etc. I find it helpful to share what I’ve learned…even if no one is reading this at all!!!
Thanks ahead of time to anyone who might have wisdom to share with us!