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....

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!

Tuesday, August 10, 2010

Open, honest...and vulnerable

I know, I know....two days in a row..what is up with that... some may think my kids have gone on vacation...but no, it's called good tv for them and lots to think about and say for me.
A month ago or so someone found me on facebook... a woman named Carrie. She had lost both of her boys to TTTS. I am always surprised at those who connect with me, especially those who lost both their babies...I am not so sure I could have connected with anyone who had both their babes saved so close to when the babies passed away.
Anyway, she, like me, is very open about her grief, about how she's coping, what she's doing and how hard and sad it all is. Today she blogged about tearing down the twin nursery. It broke my heart to see all the pics of all the twin clothes, toys, even shoes she had. It made me sad for her and sad for me...sad that I never had to do this...the few things we bought were dealt without when I was in hospital. I never took any pics of any of them.
But more than this her openness and honesty reminds me of how some people have always talked about the strength that people like Carrie and myself display. I am not sure it's strength so much as it is just how we cope...how we heal.
I found this quote on another blog...


"...there is not aristocracy of grief. Grief is a great leveler. There is no highroad out.
Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable-- open to love but also hideously open to the possibility of more suffering."

-Hour of Gold, Hour of Lead, 1932, Anne Morrow Lindberg


and I just loved how very true it is of all that I have done, all that I have become... all the I need yet to do.
I am open and honest...and very vulnerable. I've been chastised by a few people for that and I take it to heart, decide to change...be more quiet about Cole...maybe people will accept me more, like me better, visit or call more often (okay so maybe I have some other issues to work through here LOL!!!), I tell myself, because others have planted seeds, that I need to focus on my living children mostly, not be online so much, not be so TTTS focused, so angel baby focused.... but then a few days or a week will go by and I'll revert to my old ways...and then I read this.
I realize that this is me, I'm not going to change, nor should I. If I do, before I'm ready, then I know that my wound will never heal and I will not grow. Yes I am opening myself up to more hurt, to remembering and reliving...each and every time I share our story. Yes it can consume a lot of my time. Yes sometimes it does make me suffer, make me cry, make me ache all over for my son.
But mostly, it makes me feel proud of who I am, who I have become, who my children are...all 4 of them. It makes me feel like I have grown and it makes me feel I have a purpose from the tragedy.
It might not be what I chose for myself and I'm sure it's not what others would chose for me. But I am not here to judge anyone nor should anyone be here to judge me.
I have discarded the shield that others judgements have become, I will not let it set me back again. I have also thrown away the shield that remaining quiet about bad days, sad moments and wishful thinking is. It may not always be productive but it is part of this process.
I am leaving myself open to love, to live, to hope, to dream and to remember... won't you too?
P.S. In case you are a regular reader and are wondering...yes I did change the name of my blog...journey of hope, journey of healing seemed...well just not what I want to write about or focus on so much now.... but it is still a journey...

Monday, August 9, 2010

“Patience is the companion of wisdom.” - St. Augustine
“All human wisdom is summed up in two words - wait and hope” - Alexandre Dumas Pere
“Faith is not simply a patience that passively suffers until the storm is past. Rather, it is a spirit that bears things - with resignations, yes, but above all, with blazing, serene hope.” Corazon Aquino


I found these quotes when I was looking for something insightful to put on here on a topic that I am striving, for so many reasons, to embrace. Have you ever given any thought to how hard it is to be patient?
My struggle with patience covers a great many areas of my life right now. The greatest is with my living children....and I am quite certain I am not alone in my need for this in my life...any mom, especially those home with their kids all summer, must struggle with this from time to time (or all the time!!!). And if the above quotes are close to the truth...well then I think I might be struggling with wisdom lately too.
It is so very hard sometimes to just sit and wait...to not interfere, to not question, to not take over. I am sure, in my case, it comes from wanting to be in control and not being able to be at times. Now that's not to say that I let my kids be the ones in control.... though my husband might argue that with me. I try to give the kids credit, try to allow them their time to do what needs to be done. But it is so very hard to sit back and watch it all unfold...sometimes literally and not jump in and push things along, make things happen the way I want them done or nag them along to do it at my pace.
And I guess life in general can be a lot like that. Sitting back and letting things happen as the may, not jumping in to interfere with the natural order of things, not trying to control it all....well man that is hard.
I remember sitting with my social worker at St. Joe's and having this very conversation. I hated the lack of control I had over my life. I hated the unknown and I hated the fear. And maybe that is the worst part of not having patience...the fear. Worry breeds fear...or maybe fear breeds worry. Either way it's a heck of a life to live...being fearful and worrying about the things you have no control over.
I've thought a lot lately about those early TTTS days...heck the early twin days too. I have recently been contacted by a mom who lost her donor without even knowing she had TTTS and she has asked about our story. Retelling it is good...it keeps it alive in my mind which keeps Cole alive too. But it also reminds me of that fear, that worry, that lack of patience.
But if St. Augustine and Alexandre Dumas Pere are correct, then patience goes hand in hand with hope and hope, to me, goes hand in hand with faith. To have hope is to feel that what is wanted can be had or that events will turn out for the best...that it will work out for the best. And to have hope is to have faith.
Faith is one of those hard things... some believe that to be faithful you can't question. But to never question is, well not human I don't think. No matter how many questions are asked...and no matter how many just don't seem to have answers, if you have faith that God is all loving, all forgiving, all giving and all encompassing then you will find peace and...patience.
What a circle it can be....not an easy path but so much easier than having no faith no hope, no patience. No one said it would be easy to parent....to sit and wait for the listening to begin, the jobs to get done and fighting to stop. No one said it would be easy to live a Christian life...to question your choices, God's plan and the trials of life. No one and I mean NO ONE ever said it would be easy to lose a loved one, especially a child... I hope no one is that cruel. But many have said, and I believe many are right...trust in God, have faith, have hope and you will find that it is so much easier then to have the patience to wait for God's plan to unfold and reveal itself to you.

Monday, July 26, 2010

Storms of Life

Last week we went camping at a campground on Lake Huron. One night Geoff and I took the boys down to the beach and watched the sunset.



It was beautiful...there really is nothing like a Lake Huron sunset. The water was fairly calm, the wind was gentle...it was a peaceful and calm moment.
Within hours though we were hearing the rumbles of thunder. The kids were getting very agitated and you could feel the storm in the air.
We put the kids to bed and as the wind picked up we decided to walk back to the lake to see the storm rolling in. It looked a bit like this only much darker and many more clouds.



As I lay in bed that night listening to the rain pounding on the trailer and hearing the wind howling (incidentally there was a tornado warning in effect so it was quite a storm!!!) I was struck by the contrast of the evening and by how that reflects parts of my life.

My pregnancy with the twins wasn't all picturesque like the sunset picture but most of that was my own doing....the stress of the arrival of twins took it's toll on me at times but really I was very lucky to have no health concerns. I enjoyed the time being pregnant with the twins... the ever-growing belly, the tiny flutterings I felt so early, the many ultrasounds. I loved telling people I was having twins, I loved planning for their arrival. I never once considered that the outcome would be anything but a close to full term (for twins) delivery and two healthy babies coming home. I shopped for twin gear, set my mind on finding as much used as I could. I imagined the work of two babies, but I lived for the joy of doing things with two little mirror images, of watching them grow up together and of watching others watching us...multiples attract so much attention!!!
I didn't plan for a storm, especially not one as destructive as TTTS. I wasn't ready, I didn't practice tornado drills or learn how to rush to the basement to be safe from the destruction of this storm. My heart sunk when I learned of the diagnosis and it shattered as the fierce winds of TTTS crashed into my womb, stealing one child and spinning the life of the other in serious peril. Maybe it was actually more like an earthquake with a the initial destruction and then many aftershocks....the blood transfusion, my water breaking, my hospitalization, the ups and downs of being away from home, the strange test results, the arrival of my boys...one full of life, one still and quiet, and then the weeks and months of grieving and coping.
Definitely a storm I wasn't prepared for. But is anyone ever really prepared for the storms of life? Is there a way to be prepared for the storms of life? Can you ready your heart for grief, for loss, for disappointment?
In my opinion, no...not really. But you can know that through it all God is with you. He is there, holding you up as you here the most devastating news of your life...'I'm sorry, this baby has no heartbeat.' He's there for you when you don't know what to do, what the future holds...'we might be just saving a very sick baby'. He holds you in the palm of his hand and keeps you safe when no one can really be sure what is going on...'Mrs. Tummers, there is a very good chance you will have this baby in the next 24-48 hours....he's very underweight, he'll need ventilation support...he has a 60% chance of surviving and may have neurological damage'. And He's there enveloping you in His love when the most emotional events of your life leave you so filled with mixed emotions and so raw that anything and everything can make you cry...'he's fine, he's doing great, listen to his cry.... Jodie, here is Cole, he's perfect and beautiful'...so tiny and so still.
And through it all love remains...it is the steadfast bond that holds us all together....keeps us strong in the storms of life.
I found these words of this song, Love Remains by Colin Raye running through my head...

We are born one fine day
"Children of God on our way
Mama smiles daddy cries
Miracle before their eyes
They protect us til' we're of age
Through it all love remains"


"Kingdoms come and go but they don't last
Before you know the future is the past
In spite of what's been lost
Or what's been gained
We are living proof that love remains"

"We all live we all die
But the end is not goodbye
The sun comes up the seasons change
But throught it all love remains
An eternal burning flame
Hope lives on and love remains"


And it is just so true. Life goes on, things change, storms blow in and out but through it all God is with us and Love Remains. You can't plan for it, can't prepare yourself for the future. But you can trust God and know that He is here for you. You can know that you will make it through this with the love of Him, the love of your lost loved one, of your family, your friends and of yourself. You will see that beautiful sunset again, it will always return. And really, it is always there, in behind the clouds, the wind, the thunder and even the devastation...the beauty is always there....you just have to look.