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.
Tuesday, October 19, 2010
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….
STILL
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
Chorus:
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.
STILL
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
Chorus:
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 alive...to 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.
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 alive...to 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 me...it 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'...now there was a moment that took my breath away
seeing my babies (all 4 of them at different points) on ultrasound...wow! 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 child...wow, 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!
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 me...it 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'...now there was a moment that took my breath away
seeing my babies (all 4 of them at different points) on ultrasound...wow! 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 child...wow, 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
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....
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.
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