Healing, Hope and the time we have

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
― J.R.R. Tolkien, The Fellowship of the Ring

Doesn’t this just ring so true.  When a life ends, especially unexpectedly or if it’s a child, we wish with all our hearts for it not to be true…some even plead with God to make this not their destiny.  But all the wishing in the world can not change what has happened.  All the planning in the world cannot decide your fate.  We have but the time we are given to achieve greatness and fulfill the purposes for your existence on earth.
Last week this reality hit me full in the face or rather, the heart.  Another angel twin joined so many already heaven.  Cayson Sailor Page was only 7 months old but he achieved greatness in his life, he changed the lives of so many people…so many who he never even met in person.

Cayson’s mom, Elizabeth, and I became acquainted last May when she was only 18 weeks pregnant or so.  She was seeking support, answers even, for the mystery that seemed to surround her twins.  One of them, Cayson, was so much smaller then his brother and his fluid levels were very low.  But his twin, Mason, had no affects at all…everything was fine, normal.  Further investigation showed multiple complications in Cayson’s heart and some shadows in his bowel that were markers for a few disorders.  The doctors told Elizabeth that he would never survive, that she should plan his funeral. 

As time went on it became very apparent that Cayson had not heard what the doctors had determined was his fate.  He was thriving.  He was growing and he was doing great.  His health problems didn’t go away but he didn’t any sicker either.  The doctors discussed many scenarios and proposed many plans for treatment and for the timing of delivery.  In mid-August Cayson and Mason were born.  Cayson was only 1lb 11 oz, his twin was over 4 lbs I think.  Cayson was alive and he was doing well for such a small baby with a serious heart condition.  Time went on and Cayson had various struggles…but he always managed to defy the odds and keep going.  He had two heart surgeries and eventually made it home in December I believe.  He was a typical baby…laughing, smiling, enjoying time with his family and friends.  He just seemed to have a zest for life. He showed the world that we can never give up, that doctors don’t determine our fate.

Children with this type of medical history seem more susceptible to infections, viruses etc and this was true for Cayson.  Around a month ago he ended up back in the hospital for a virus or infection… something wasn’t right for him.  Once again his health went up and down but they managed to discover what was wrong, he had a strain of influenza.  And then suddenly one day he coded and needed CPR to be revived.  Things were so bad that he was put on life support.  And sadly, he never recovered. 

In those last few days there was a huge online community praying for him.  So many people prayed for a miracle, prayed for healing.  One day Elizabeth posted that after long talks with Cayson's doctors and, seeing that there were no changes in him other than the rapid decline in his limbs, they believed that Cayson's body is trying to tell them no more machines. They made a heart wrenching decision. They believed that if it is God's will for Cayson to survive, he would make it without machines. But if God had other plans, then what was meant to be, would be.  It was all in God's hands.

I struggled in what to say, how to react….especially with so many people praying for a miracle, saying that God would heal Cayson and send him back to his family.  It’s not that I didn’t believe that was possible, not that I don’t believe in medical miracles…Cameron is one…  but the reality was that it just might not be.  I know that people turn to faith at times like this, people pray that God will intercede.  And when the outcome they didn’t want, they didn’t pray for happens then they question their faith, their beliefs, the question if God really exists.  I wanted to share words that would give hope but also prepare people’s hearts but I was afraid.  I didn’t want to offend anyone, didn’t want anyone thinking that I wasn’t hoping for the same miracle they were, that I was ‘writing  Cayson off’.  I was so uncomfortable in sharing my thoughts but I knew I had to….not really for Elizabeth because I think she had come to terms with this but for all those who were praying for Cayson.  And so I sent Liz this message….             

I think we pray for healing for our sick children and so often assume that our version of healing is what God can do. But sometimes the only healing that God has is the ultimate healing in paradise. Being able to accept that and place it in God's hands takes great courage.

God decided before the doctors did that Cayson had a job on earth to complete, he knew that Cayson would change lives, impact those he and his parents met. Perhaps his job here is done or perhaps it's barely begun...that is for our Lord to decide.

Cayson changed the world and will continue to impact it for a long time to come.  He chose to do amazing things with the time he had here... or God chose to work through him to make that happen I guess.   His time on earth is over…as Vince Gill once sang… "Go rest high on that mountain. Son your work on earth is done” but only Cayson’s earthly life is over…God has great things planned for all of us from conception, through our life here on earth and into our time in heaven. 

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.
Winston Churchill

Perfectly worded Mr. Churchill… our lives on earth are all we focus on and we search for their meaning, our purpose.  But perhaps our lives here are just the beginning, just training for the life God has planned for us after our work is through.

Sharing this kind of thinking, especially the part of God’s version of healing not being the same as our version of healing, has led to much thinking about what God wants from me, what I am to do and say, how I am to help…and if I am really ready to do what he is asking. I attended a bible study two days after Cayson passed away.  We are studying the book of Jonah.  Now there’s a guy who didn’t want to do what God was asking.  He ran, he hid, he refused…but he continued to pray.  We talked a lot about consequences at this study.  How the choices we make have consequences and so often they are not anything we would have wanted and not anything we think we could possibly learn from.  The author of the study series gave us this to ponder…

The more vast the consequences you have had to bear the more vast the work he has for you afterwards

Now I am not going to say that I made choices that lead to the consequence of losing my son…because that is NEVER a consequence God wants for us.  But I do know that I made horrible choices after he passed away in how I dealt with others, especially Geoff.  I said awful things and I was so very selfish.  But in all honesty when I read this passage and didn’t focus on it as a negative thing but rather just how vast the consequences of a life lived can be.  I have experienced a lot of death in my life…of very young people too.  I lost a boyfriend, friends, a child I worked with and a child of my own.  That is a vast amount of grief.  In the midst of this bible study about the consequences of my sins I began to drift to this thought of why I have experienced so much of this…why I had to lose my son especially and why so many people I have connected with have also lost a child.  I have to say that it is very clear to me that the vastness that I had to bear there has lead to such a vast work, so much that I believe God has directed me to.

A few days ago I sat in on a Gr. 7 religion class.  The group was watching Touched by an Angel and this episode was a perfect fit for the week before Easter.  It's from season 7 and is titled Netherlands. In it Monica questions her job as an angel, questions where her heart is because she sees such sadness, such loss on earth.  After a bombing that takes many lives she questions her faith so much that she is tempted by the devil and she ends up in the dessert asking God if this is really her fate.  There is much more to the the story but the part that really made me think about my heart was this....

“You will never understand Love on Earth until you understand death."

Followed by.... 

"Why does He allow suffering?"

"  Because He allows free will.  If there were no free will there would be no choice to love."

 Love is a choice and understanding love is so hard sometimes.  But understanding death is even harder.  Asking why can drive you insane.  But Tess was so right when she said that you can't understand love if you don't understand death.  To love someone, truly love them from the depths of your heart, means that you are willing to accept death as a part of life and that you won't run from it or shelter yourself from it.  Loving someone is a choice and we make it freely at times and with such hesitation at others.  When death comes and takes someone we love we do question God but deep down we know that this was part and parcel of the love we gave freely to that person.  They are intertwined, they are part of each other.  

Stepping into a world of death to offer support is hard, it's risky. You begin to care for those you help, you begin to love them.  You see the love they have for the person they have lost and sometimes you see death consume them.  But really what you are seeing is love and life consuming them.  Knowing that each time you offer support you open up your own heart wounds, remember your own times of love and death intertwined and relive the nightmare that may well be a part of your loss story...well it's tough.  But it's a calling that God has for some of us and for me it comes as a result of consequences and it's job is vast for me.  Each time I speak of faith with death I feel comfort, I feel peace and I feel hope.  I am so glad that I can share Jesus and his love with those who are suffering, who are lost, sad, hopeless.  It's not always easy but since I can't decide how death will happen or to whom, then I must be content and empowered by what I do with the time I have been given by God.  

A New Project

So ever since I was the guest blogger, of sorts, on my friend Alexa's blog, No Holding Back , and told my boys story I have been thinking about some things that came to me earlier this year when I wrote about being conflicted and confused about what God wants from me, where he wants me to go. 
It runs along the theme of spiritual gifts which we covered in our church about a year ago...and, of course, I blogged about.
And so I have been thinking about how many times I have shared our journey with others and how it has changed an impacted us, about what we have been motivated to do because of where our twins have taken us.  So many people have told me how 'inspirational' I am.  I laugh at this most times because I really feel that I have done so little.  Don't get me wrong, I do feel encouraged by these amazing compliments of others, but I don't think of myself as inspirational.  Those kinds of words are ones I think of in reference to Mother Theresa, Martin Luther King, Nelson Mandela, Nick Vujicic (an Australian with no limbs who inspires people, especially children, to pursue their dreams and work past things that seem to stand in their way), Helen Keller and Mahatma Gandhi to name a few.  My impact on the world is small and insignificant in my eyes but I am delighted to know that I have helped others.
I have also shared our story with many of the Christians I have met since becoming born again, since realizing that God was changing my heart and that I could walk with Jesus in my life.  I know that loss brought me closer and closer to God, I know that God allowed TTTS in my life to bring me closer to Jesus and to walk with him.  My testament of how God has worked in my life and how I have come to trust Jesus is one I like to share, though admittedly, it's only really been in the last year or so that I have shared that aspect of our journey.  
When I look at the last 4+ years of my life and see the amazing things that have happened and when I hear the words 'you are an inspiration' I marvel at how crisis, tragedy and loss can inspire such, well, good.  But like I said before, I am not someone who I think of as inspirational.  That word is for the famous people I mentioned but also for those in my own circle, people I have met over the years that have done so much with things born from crisis or tragedy.  My friends Lonnie and Michelle Somers, founders of The Fetal Health Foundation , my friend and fellow TTTS mom of an angel and a survivor, Megan Bradshaw, who founded Tiny Tears  and Carley Dudley, an Australian mom who's loss of her son inspired her to create these amazing images for parents who have lost a child.  
After hearing what people wrote in response to Alexa's blog post about my journey I realized that the good that comes from tragedy needs to be shared.  It is inspiring, it is full of hope and it can help get someone through some pretty tough times.  I think this may be something God is calling me to do as so many of our stories do have a faith component or are clearly amazing works that he has given us to do.
And so I would like to start sharing the stories of others who have been motivated by tragedy and loss. And it doesn't need to be anything more then motivated to share with others or help others...maybe just the fact that you shared your story helped someone else to keep going through their own feelings of sadness, frustration and confusion.  Maybe you remembered the things people brought you when your crisis happened and now you always take a special meal or gift to others.  Maybe you write poetry and share it.  Maybe you go to church now and never would have dreamed you would.  Maybe you decided to change jobs or move to a location where you could make a difference.  Maybe you were inspired, like my friend Piperlyne, to create a website to educate others or maybe to motivate and help others.  The list is endless of the amazing things that have come from a place you wish you'd never gone to.  
I want to hear about it.  I want to share it.  
So PLEASE, PLEASE, PLEASE...share this post with others and then email me your story.  I don't care how long it is and I would love to see pictures in it.  It's time for me to show just how much of a journey life is for us all.
Please email me at jodietummers@gmail.com with your story or any questions you have.  
Thanks!

Happy Birthday my little men!

Wow...where has time gone?  Four years ago right about now I was full of anxiety and tears....so much bittersweet emotion as I prepared to welcome Cameron into this world after a long anticipated arrival while at the same time I prepared to say hello and goodbye to Cole. 
I marvel at where 4 years has brought me.  I have done a lot of looking back over this blog in the last few months as I explore grief and share my findings and thoughts with others on my other blog.  I have come so far and yet the core of me, the real Jodie inside the facade that becomes my outer shell some days, has not truly changed much at all.  (incidentally the outer shell has changed alot... 4 years ago I was pregnant and VERY overweight...now I am a newer, smaller, more dynamo me LOL)
Today I posted this picture that two friends helped me put together....

And I have had a few people send me hugs on what they say must be a bittersweet day.  It got me to thinking about how I feel about this day and about the message in the picture above.
Today is a day to celebrate my miracles...and they both are miracles in so many ways.  Inside my body a miracle was created...what a cool thought.  All children are miracles....inside every woman's body miracles are created when pregnancy begins.  Twinning is just that much more miraculous... especially when it involves the splitting of an egg into two or more babies.  It's almost hard for to comprehend, even now 4.5 years after it happened.  That an egg can split into two identical beings... absolutely amazing.
The miracles that occured inside of my body during the 32 weeks I carried my twin sons amaze me still.  TTTS is not a miracle in my opinion...miracles are positive things and TTTS, in and of itself, is by no means positive.  The fact that it happens in only 15% of mono di twins is a bit of a miracle.  I mean when you think that these two babies share a placenta, are connected to each other via a placenta and in only 15% of these pregnancies does the balance get shifted off and the fluids become unbalanced, the transfer happens between two babies instead of just within each babies connection to the placenta...that is a miracle. 
Then there is the miracle of the lead up to TTTS.  Cole had very little of the placenta to live from and his cord was inserted poorly in the placenta...yet no one knew this because he did not show any signs of any distress because of it...that is a miracle.  A sign might have meant earlier intervention that would have been risky for Cameron.  The ultrasound that detected TTTS...was a miracle.  It wasn't supposed to happen. 
Countless miracles happened after TTTS too... severe fetal anemia was detected almost immediately after we learned Cole was gone and was treated inutero.  No brain or organ damage occured from that or the TTTS and loss of Cole.  My water broke at 26 weeks but I never went into labour... all very miraculous. 
But the physical miracle is not what really sits in my heart as being so absolutely amazing.  No, the truly miraculous part of my twin sons is what they have given me, taught me, done for me and others in their lives..and in Cole's death.  They truly are miraculous in the power of hope, the power of healing and the power of love.  I created two amazing little miracles and they have created miracles with every life they have touched, most especially mine. 
God gave me these two little miracles to change my life and maybe, so that I may change or impact others lives.  Today this song keeps running through my head and I wasn't sure why til I pulled up the words....

"God Gave Me You"


I've been a walking heartache
I've made a mess of me
The person that I've been lately
Ain't who I wanna be


my life was a mess before...heck there are days now that it seems to be too but I know I was shallow, inconsiderate and selfish....I wasn't who I wanted to be

But you stay here right beside me
Watch as the storm blows through
And I need you

Cause God gave me you for the ups and downs God gave me you for the days of doubt
And for when I think I've lost my way
There are no words here left to say, it's true
God gave me you
when I question myself as a parent I have this little boy with redish blond hair and hazel eyes who hugs on impulse...offers hugs to all who are willing...who shows me that I am the most important woman in his life.  When I wonder if I spend too much time helping other TTTS families I see the images I have to represent Cole...the picture of him and Cameron together....and I know that sometimes I am the only one who 'gets it' in someone's life and feel him guiding me to keep going...even when I type through tears as I remember him.... God gave me those boys...


There's more here than what were seeing
A divine conspiracy
That you, an angel lovely
Could somehow fall for me
You'll always be love's great martyr
And I'll be the flattered fool
And I need you
Maybe a bit of a romantic verse but the fact is that I feel this was a divine conspiracy.  My twin sons sat with Jesus and knew they job they had to do...and the jobs I had to do.  They fell for me and I for them the moment that I saw them on that ultrasound monitor.  I need them to keep me grounded and to remind of what is important, to help me find hope...
God gave me you for the ups and downs
God gave me you for the days of doubt
And for when I think I've lost my way
There are no words here left to say, it's true
God gave me you
There were so many times after the loss that I felt like I was lost but just as often as not when I felt this way Cameron would wrap his arms around me or snuggle in and give me the love and life to two boys to keep me going.  Their love redirected me...
On my own I'm only
Half of what I could be
I can't do without you
We are stitched together
And what love has tethered
I pray we never undo
Our entire family is stitched together by the life of these little boys.  We have all learned so much from them.  My kids love Jesus and one reason is because they know Cole is with him.  They know Jesus because crisis, trial and loss lead us back to him. 
Cause God gave me you for the ups and downs
God gave me you for the days of doubt
God gave me you for the ups and downs
God gave me you for the days of doubt
And for when I think I've lost my way
There are no words here left to say, it's true
God gave me you, gave me you
He gave me you

Happy Birthday sweet little miracles...I am so glad God gave me you!

Missing what we never had...

A fellow TTTS mom shared this and I thought it captures the feelings of so many of us who have lost a child before ever got to know them.  Whether the loss was of a twin or not, if it was a stillbirth, especially one where death occurred long before delivery then at some point in time we seem to all have felt, and been treated, this way.  I know that I have written a few things that capture parts of this but I want to thank Elaine Harrah for putting it all in one place.  I hope this might help others to understand why we will never be 'over it' and why the fact that we never go to know our children makes it so very hard.

I hate being asked, "It was so long ago. Why aren't you over it yet?" or "Why are you so upset? After all, you never even met her." You never even met her. And that, my friends, is exactly why I am still devastated to this day. . .

My daughter didn't change the world. She wasn't know for her sweet smile or playful personality. She never got the chance to live. Not many people understand this, but those of us who have lost a child to miscarriage or stillbirth know that this is why we grieve so hard for our lost babies. We never even met them.
... 
I never saw my sweet Brielle open her eyes. I never heard her cry or watched her take a breath or felt her heart beat next to mine while we nursed. And that is exactly why I ache for her. I am left with nothing but unanswered questions. Would her eyes be green like Evie's? Would she love puppy dogs or kittens? Would she be sweet and introspective or would she be a mischeivous clown? Would she have loved soccer or ballet? Would she have been a cheerleader or played an instument in the band like her daddy? Would she have been home coming queen or would she have been a goth? Would she have gone to college or traveled the world? Would she have had a big career or settled down to have a family? Would she have been a doctor, a writer, a fitness instructor? I, and my family, will never know the answers to these questions and a million more like them. 

And that is the root of my ache. I had my dreams of raising twins slip through my fingers before I'd even fully grasped those dreams. My dreams of matching dresses, double birthday parties, matching carseats, sleepless nights, toddler tantrums times two, all died with her. And I have nothing but questions as I visit her grave, "Who would Brielle Harrah have been?" The ache is the loss of possibilities, of hope and dreams and aspirations. My future and my world and that of my whole little family was changed irreversibly when our girl left for heaven.

So don't ask me why I'm not over it, because I walk around my life every day, knowing that someone, who can never be replaced, is missing. Someone I never even met. 

So I have nothing of her to mother but her memory. So that is what I do. I mother her memory and carry an enormous and overwhelming love in my heart that can never be returned with snuggles and kisses and "I love you, mommy." All I can do is this. I can proudly say her name and claim her as mine. As long as I draw breath, she will not be forgotten.

Choices or Chosen

I began this blog post about 10 days ago... at the start of a few very rough days in my life.  I debated about erasing this post but realized that so much of it relates to so many areas of life and was very much worth sharing.....

Tonight I am having a hard time with a few things and am really finding myself struggling.  I've been in prayer off and on for a good chunk of the night and I will admit I have shed a few tears tonight.  The reasons are unimportant...well actually they are very important but they won't be shared here in too many details.  Suffice to say I feel emotionally and physically drained and yet so full of questions for the Lord and so much in need of scripture.  I decided that I needed to work my way through this and found myself here...knowing that sometimes writing it is better then thinking it, praying it on 'paper' is more fulfilling (and less likely to be forgotten too)

Tonight my heart is filled with questions about the choices I have made and need to make and the life that God has chosen for me.  I am really struggling with some of this.  I am really questioning if I made the right choices a few times in my past or if I am making the right choice now.  I have tried  to pray and give it over to God but I am not sure what is my own free will telling me what I should do and what is the voice of God.  The fact is, I know the choice I need to make but, dammit, I don't know if I can keep it, don't know if I can do the 'right' thing.  

Do you ever wonder that... is this really what you want from me Lord? Is this really all there is?  Do you really want this for me? 

My answer to those questions has been a resounding NO...this can't be what he wants, this can't be all there is.  This choice hurts to much, this choice makes me feel judged, alone, angry, bitter... the list could go on but the jist of it is that I just can't imagine that this pain is what God wants for me. 

This morning we began a six part series in women's ministry on Jonah.  Here is a peek at it....

The first session focused on what we do when God interrupts our lives...and for many people, like Jonah, we run.  But the real focus was on their interruptions and how we needed to look at them... not as a negative thing, not as a dreaded thing or something we wish to run from. But rather as a privilege...as the gift from God that they are.  But oh how hard that is.  How hard it is to look at your life and see the path it is on and know where you plan to take it... only to have God change that plan, put a big road block on your path and shove you hard down his.  

Jeremiah 29:11-14

New Living Translation (NLT)

¹¹ For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. ¹² In those days when you pray, I will listen. ¹³ If you look for me wholeheartedly, you will find me. ¹⁴ I will be found by you,” says the Lord. “I will end your captivity and restore your fortunes. I will gather you out of the nations where I sent you and will bring you home again to your own land.”

I feel, tonight and other times too, that just when I think I have figured the next step in God's plan out, a huge wrench will be thrown into it.  But more then that, I find myself wanting to run from where he seems to be pushing me towards tonight.  I find myself asking him so many questions...Is this really what you want from me? Is this really what I am meant to do?  And even when I answer those with a resounding yes (because deep down my heart knows this is the plan God has for me and the choices I am thinking of would not be of God) I still say 'really Lord, really.  There is no way I can keep doing this'.  I want to make the choices, I want to be in control of that.
We were asked today if we are managers or owners. Do we manage the life that God has given us or do we try to own that life and run it ourselves.  Tonight I was just wanted so bad to be an owner.  I don't want to manage this life under God's direction, I want to take it to where I need it to go right now... a place that isn't so hard, painful and confusing.  I want to make the choices not have then chosen for me.

Proverbs 19:21

New International Version (NIV)

²¹ Many are the plans in a person’s heart,
    but it is the Lord’s purpose that prevails.

But that's not how it is because we are a chosen people not a people of choice.  Accepting that is hard at times.  Giving it all over to him and trusting him completely isn't easy and it isn't where my mind is telling me to go.
We discussed this morning about where God wants us to be, why he interrupts our lives with these privileges, who are the people God wants you share this interruption with. The presenter asked us to think of people in our communities who God might be calling us to minister too...despite us not wanting to be there.  When Jonah was called to Ninevah.  He didn't want to go. Ninevah was full of immoral and unlawful people, it was full of people who did not know God and did not care to know God.  Jonah didn't like those people and he didn't want to go to save them. And so this morning we were asked where our Ninevah was and if we could remember places it had been in the past.
There are a few obvious ones for me in the past...I certainly didn't want to join the grieving parents group.  I would never have wished that on anyone, I still wouldn't.  I have much to expand here but   I think I will leave it to discuss in my other blog  as it applies more there.  But the fact is I wasn't given a choice and I didn't even know that God was calling me there... to my Ninevah.  And right now I don't know if I am hearing the Ninevah God is calling me to either.  Somedays I think that it could easily be mental health ministry.  God knows how much this has been put on my heart, put in my life.  God knows how in the middle of this I am right now.  But I SUCK at it...so this can't be where God is calling me...can it??? I am afraid of the unknown it brings me to, afraid of the failure that seems to happen over and over and over again.  So this can't be it...right??? How do you know???
The simple answer is prayer.  God will show you if that is the place where you should be.  Want to know how he will show you...he will give you the skills, the strength, the knowledge, the compassion, the empathy, the love and the understanding to be there.  Even when it doesn't seem that way all the time..if it seems like it is EVER working...then God has got your back there...he's called you to this Ninevah and he wants you to stay.  Are you willing?  Will you take up the challenge?
The choice is really yours...free will gives us that ability.  The question is do you want to choose or do you want to be chosen?