Tuesday, January 17, 2017

Stories of Hope - Jodie's story 25

And so as my faith grew stronger and my purpose seemed so much more definite life became so much easier, so much more peaceful, so calm, so full of joy and happiness right???? Hmmmm.... well, it is often said that the enemy attacks harder and harder as he sees us grow closer and closer to God.  This is exactly what was happening in my life.  As I found peace in losing Cole and found more and more opportunities to share my faith, the enemy began to attack my family, most especially Geoff, his health and in turn, our marriage.  That spring things seemed to spiral downwards for Geoff.  His job was something he loved to do, farm, but promises that had been made to him were not being carried through on and his co-workers resisted every step of the plan his boss had mapped out when he was hired...and therefore plans went out the window.  He was exhausted, he lost a ton of weight and he was miserable to be around.  He was on edge much of the time and being around him was like walking on egg shells.  He spoke to our doctor and was put on stress leave.  Initially this seemed like a good idea....time to get healthier, time to sort through things and, perhaps, time to re-evaluate his job.  But unfortunately it put us in a very bad financial place and raised our personal stress level immensely.  Reluctantly he returned to work and quite quickly the angry moments, for both of us, grew and grew. 

I wrote about it in late May...only a month or so before things changed HUGELY for us... but I’ll get to that in a bit.  It think sharing my exploration of anger is important as it was also very key in what happened a few weeks later.  What you will read next was taken, in part, well mostly actually, from an actual blog post.  I wasn’t going to include it all but when I reread it I realized how important it was to share this message but even more so, how important it was that I hear it again.

I never felt I had an issue with anger. I knew that I had a short fuse at times… and had always been this way. Usually I got angry, I spoke my mind and then felt that release. If I didn’t do this I usually ended up stewing for hours, unable to move forward, unable to forgive and forget. I planned what I’d say the next day, plan how I’d defend myself or let the other person know how their actions made me feel. I obsessed on it and could hardly sleep. And usually I let it go after a short period…not entirely, it sat waiting to rear its ugly head sometimes but for the most part I moved on. 

But not everyone is like that. Someone close to me once told me that it’s great that I can be the way I am, great that I can blow, release, forgive and be happy all within minutes but he can’t…and it’s hard to deal with. I have such a hard time being around moody people or those who I know are angry with me. I want to fix everything, want the world to be happy and peaceful. It’s not a bad way to be but it’s not for everyone and can be pretty intrusive to those who don’t want to deal with it that way. Their way of stewing, mooding, being silent or spreading their anger around isn’t maybe the best for them but it helps them to come to grips with what has happened, helps them to find solutions. 

Finding the root of anger is one of the hardest parts of a relationship… no matter who that relationship is with. That spring I had an epiphany about something that caused me to get angry over and over again and it was great to finally see that. It related to disappointment, unmet expectations related to Geoff and my marriage.  Unfortunately I knew it would be a long road to recovery from this root but I was working on it. Being overly disappointed in some things that have happened over and over again, being hugely disappointed in what is the reality is very hard to take, very hard to move forward from. But again, I was working on it.

So with this new knowledge of my anger in my mind and just the fact that anger had been a big part of life lately, it was rather fateful that many TTTS moms had been posting about anger lately. So many were, and are, justifiably angry…and I’d definitely experienced my share of this grief and loss related anger.  I felt drawn to do some research on anger in grief….at the time that I wrote this originally I didn’t even realize that I wasn’t drawn to this subject for no reason, it didn’t just fall into my lap… the Holy Spirit put it there.  Now that I realize that, I am just so profoundly thankful that God gave me the nudge to research this…and to write about it to.  And now I’ll share it directly here. 

In my research I came across this quote from ‘On Death and Dying’, by Dr. Elizabeth Kubler-Ross. She wrote that one reaction we humans have to loss is anger. She said Few people place themselves in the patient's position and wonder where this anger might come from. Maybe we too would be angry if all our life activities were interrupted so prematurely; if all the buildings we started were to go unfinished, to be completed by someone else; if we had put some hard-earned money aside to enjoy a few years of rest and enjoyment, for travel and hobbies, only to be confronted with the fact that [we are dying]. What else would we do with our anger but let it out on the people ... who rush busily around only to remind us that we cannot even stand on our two feet anymore.

Obviously this is written about someone who is dying but I think the loss of a child causes you to die inside and so many of those things you had planned for your life appear to be shattered…and really are in so many ways. And even those who’ve had drastic changes, setbacks or personal losses (of a job, of a dream, of a relationship) are dying inside too.
The author of the article I found Dr. Kubler-Ross’s quote in wrote about the intense, all consuming anger that some people have and how scary he finds it. His fear stems from fearing for his safety but also for his loss of control when he is angry and what he will say and do that he will regret later.  He shared that Dr. Kubler-Ross came to the conclusion that the small losses of our lives are the training ground where we learn the coping skills we use when we are faced with large losses. Put another way we tend to die the way we have lived. If we rely heavily on denial to help us cope with the small losses of life, we will tend to rely heavily on denial when we struggle to cope with the big losses. If we rely heavily on anger and indignation to cope with the small losses of our life, we are likely to depend on anger to get us through the big losses.

Wow….isn’t that a realization about how so many people deal with things. There are many people who do react with denial when things go wrong or when someone they know casually dies and they don’t really react at all. But I also know a great number of people who blow little things out of proportion and who get angry at the littlest things and can’t let go…remain so angry for so long. When a big upset happens, when a huge loss happens it’s catastrophic and throws their life completely off kilter. They get so angry, so bitter, and so full of negativity and it is so hard to move past that…and so much damage can be done at that time.

I decided while I was on this topic I would do some more research…especially in how anger affects relationships. What I learned is something I’d learned time again in courses I took for my job and in things I taught my students who were struggling with behaviour all the time… anger is a powerful, perfectly normal emotion that everyone feels at one time or another. Experts say that anger develops more often in the family in marriage and with children than in any other relationship. The second most common place for anger episodes… at work. Because of this, more people are injured by the violent acts of someone they live or work with than by strangers.

It is the most poorly handled emotion in society and you see it everywhere…Road rage on the roads, shouting matches and fights in the arena, violence at school and domestic abuse in homes. It is the source of many legal problems and the root of many health issues…headaches, high blood pressure and chronic pain. Science has just recently begun to recognize the contribution anger makes to these and other diseases. When coupled with workplace and family stress, unresolved anger can cause emotional, physical and spiritual health to suffer. This can lead the angry one to lash out at the nearest person.
But what so many people need to realize is that because anger can be controlled, it makes anger a choice. Anger is a learned response to a trigger in our environment. While some people may have a tendency to become angry, it's not okay to give in and simply say "That's just the way I am, and there's nothing I can do about it." Ultimately we are in charge of which behaviors we choose in response to the emotions we feel. How many times do we hear people say things like, "She/He made me angry."

That statement is inaccurate. No one is ever made to be angry. No one is forced against their will to lose their temper. Anger is a learned response to a provoking situation.

And how does that all tie back into grief and loss, you knew I’d come back to this right???. As I see it, as I’ve lived it, as I’ve watched others live it I see how controlling anger can be in your life and how hard it is to just be…to just live, to love, to laugh, to remember what life was like before ‘IT’ happened. It’s not easy. I was still so pissed off at times that I had this happen to me and to my family. I was, and still am at times, angry that I missed out on being that twin mom and Cameron won’t have his twin with him and I was still struggling with the changes that losing Cole had done to me…I wanted my old life back and yet I liked the new me at times too. I knew my family was forever changed because of Cole and, for sure, we had angrier moments and that anger had in turn affected all of us. But I knew I’d be telling the hugest lie around if I said that we didn’t have anger issues before. Thankfully we were working at these issues and had what we felt were some wonderful professionals helping us with this. I wouldn’t realize til a year or two later that these professionals, as secular workers, weren’t making the connection with us that would, ultimately, provoke us to open our eyes and change our hearts.  But at least we had help.

When I originally posted this ‘anger’ post, I read a lot of my past blog entries and in reading these things I realized how far I had come…and in doing this blog project I realize how much further we’ve come since then. I realized that for so many reasons time really does help with coping. Unlike the saying, I don’t believe at all that it heals all thing, nor will time ever cause me to forget or to devalue. But it does help to make my heart feel more put together and not so broken and it helps me to accept and move forward. I have experienced the intense anger that grief and loss bring about and I have moved forward.

Wednesday, January 11, 2017

Stories of Hope - Jodie's story 24

Happy New Year!!!  I took a week or two off from posting and enjoyed time with my boys over the school break.  Lots of skating, tobogganing and time with friends and family.  It was a wonderful holiday season this year and likely the first that I didn't shed any tears on Christmas Eve.  I can't say the same for Christmas Day as Geoff and the boys completely surprised me with this beautiful gift...

I have always wanted a piece of jewelry with all my boys names on it.  This brought tears to my eyes but joy to my heart!  And that joy surrounded us during all of our holiday celebrations.  What a great way to celebrate our saviour!

And now to move back to 'the rest of the story'.... (a recap, my last post ended with the peace I found after the passing of my friend Brian with a feeling that he was in heaven looking after my son)

And so with this new found peace I journeyed forward.  My posts on my blog became deeper, my exploration of faith became more purposeful and I stepped out of my comfort zone to share my feelings more and more.  The idea of the true journey of someone dying being about those left behind and not going to heaven began to really take shape in my heart and my head.  I began to share this in groups where parents who were struggling to find their way to peace were ‘hanging out’. 
One day some people commented that they felt like there couldn’t be 'a God' because why would anyone want to do this to us, what had we done to deserve this 'hell' and pain. Some people believed that it was a beautiful fairy-tale that brought comfort to those who needed it but really it was just that, a fairy-tale. But others felt the opposite, they felt like there must be a God, and that he must have really wanted their babies and had an amazing job for them. It made me ponder things and put my feelings into perspective and words. I think I may have written some of this earlier but this is what I wrote to them....

We are all entitled to our opinion and all grew up so differently. We all experienced TTTS in different ways too and it affected us differently. I grew up believing in a 'good' God...not the hellfire and brimstone kind, not the evil and sin sorta situation. More like God does amazing things for everyone and He has a purpose for us all. I had always wondered at people believing that God took those people home that He did because He had a special job for them. I, too, thought that it didn't seem right...why take a good person and leave a jerk here??? I have since come to believe, very strongly, that God's purpose in the whole grief and crisis journey is not about the person He takes, it's not about having a special job in Heaven for that person (though I do believe that He may give special jobs to people who are there). I believe that God is here, not for those that go before us but for those left behind and that the loss isn't about their job in Heaven but about our job on earth. I truly believe that Cole went ahead of us because there was a great purpose for me here on earth that I would need to feel this hurt, this pain, this brokenness to understand. I don't think God wants to cause us pain or wants to see us in pain. I don't believe, again, that it is about the person 'He takes from us' but rather about Him being here for us after that person is gone. I believe very strongly that I will see my son again...I believe very strongly that Cole and God guide me towards a goal...their goal. I am so very drawn to do and say things that I never was before and to me, this is my angel and my God speaking to me. I am sorry that others don't feel this way but I don't feel I am living in a fairy-tale...and if I am well...well at least it is a place of approaching peace and hope (I say approaching because there are still bitter moments and angry times but they grow less and less).

I spent a lot of time talking about this subject with a few people.  Some people truly supported and agreed with me, others looked at me as if I had two heads. Some thought what I said had merit (some even sent me personal messages to say thanks for this perspective) and others shot me down. And guess what...I didn't care either way. I was going to do what I felt drawn to do, I was, and still am, going to be the person I felt God was pushing me to be. Did I want others to believe what I believed...no, not really. I mean I guess I'd like to think I wasn’t alone in this thought process but what you believe is so truly personal that I did't believe we ever have a right to questions others beliefs. I did believe we had a job to share God with others and to help them see that He is there for them but was it my job to change people's minds about their religion, to convert them to mine...no way. 

Something that I stressed often though was that this was so very hard to get to, this place of peace, for some anyway. Actually it wasn't the place of peace that came first for me, it was the place of acceptance. It had taken me so long to accept that I just had no control over the major things that happened in my life. When we found out we were expecting the twins I was blown away...couldn't have seen that one coming for anything. I questioned why and how but came to a place of acceptance. When we lost Cole I questioned again and, in all honesty, I was, and am, not always done questioning. But right from the start I believed there was great purpose for this 'twinness' to come to my life, as well as for Cole to be my son in Heaven and not on earth. I believed God had a plan for me, the mommy left behind. When I was in the very early stages of the loss... the first 3 months or so after he passed away...really before he was born, I was sure I knew part of the reason... I felt it MUST be to bring our family closer, to get Geoff and I working together better as parents etc. Each time that would blow up in my face, each time I would get a call from home that left me upset, angry, frustrated etc. I would question this plan or question myself. In time (okay in a very very long time) I came to realize that I just might not EVER understand fully this plan but I could accept it, I could take God into my heart and ask Him to help me get there, help me make good choices, help me be what He wants me to be...to guide me. I felt so drawn to helping others, so drawn to fundraising and to raising awareness.  I am very certain that I was left behind for a reason and that hasn’t changed in the 6 years since I first broached this subject. 

Once again, I am marvelling at just what the Holy Spirit was saying through me.  I mean the above writing, for the most part, was something I blogged about in January 2011... before I realized what a relationship with Jesus looked like, before I began meeting others who challenged and stretched my faith, who mentored me, who helped me find my way.  And in my mind the events that happened later in 2011 that made all of that happen, have always been where I thought my faith truly began from.  This blogging project has opened my eyes to see that I was much more in tune with God than I ever realized, that I was a vessel for the Holy Spirit before I knew that was even ‘a thing’. 

Saturday, December 31, 2016

Stories of Hope - Jodie's Story - 23

Interestingly enough I am actually back tracking with this post below. It was actually written months and months before the parts of the story that I’ve covered in the last few days but since it was written at the end of ‘the year that changed me’ I felt it was worth a reshare on this, the last day of 2016. It’s interesting to me to see how far I actually have not come in 7 years. Not that I spun my wheels but that I was so much further ahead in my faith then I ever realized, then I give myself credit for. So many other things have changed but the core of me and my faith…it’s really only grown in the sense of a greater relationship with Jesus and in learning to trust God with everything. My core beliefs have hardly changed at all despite all the influences, experiences and growth that has happened in my life.

So here’s the exact post from Dec. 31, 2009

I read a few other TTTS momma’s blogs from time to time. One of the other mom's wrote some amazing words in the days after she lost one of her twins in utero. She echo's my thoughts so much so I'll post some of her blog and comment on it afterwards....

We find ourselves torn between two very real, very different emotions. We continue to go from one extreme to another in a matter of moments and it is confusing, exhausting and horrifying. I have asked myself how can God be in this? over and over again, while moments later I ask myself how can God not be in this? It is, in fact, more comforting to know that God is in this and has been a part of this from the very beginning than to assume he wouldn't be a part of causing me so much pain. He is part of this pain and he sees my pain. We don't want to hear that God needed my child in heaven or that he was too sweet for this world. We know that God does not need anything from us, including our children. He has all he needs, we just have the privilege of getting to be a part of his story. One day we'll have answers to our deepest hurts, or perhaps one day in the grand scheme of things our pain and suffering will make sense. For right now we do not try to make sense of it because we will exhaust ourselves again and again

The lines that touched me most were the ones about God being with us and not against us and most especially the part about not needing to hear that God 'needed my child in heaven or that he was too sweet for this world'. I have never felt this way, I have never, when any child died long before their time, said that God had a plan for this child, that they had a job for them in Heaven. My God doesn't work that way, He doesn't take from me what he knows I need. And, though it is tough some days to feel like it is a privilege to be a part of this part of this story, I know that it is. It is a privilege to know that I am being shown how to appreciate life and that by suffering like He did when his son died, that I am becoming a better and stronger person. I know that I have grown as a person and, although my life may be changed forever because of our loss, it may not always feel like it is for the worse. Someday it will all make sense....likely when I hold Cole in my arms again.

And so in these last moments of 2009...a year that changed me forever as did 2008...I am counting the blessings that He has given me. I have such an amazing family... a loving husband who may drive me crazy some days but he also DRIVES me to reach harder and further to 'make it work' and to forgive, forget, move on and look beyond the surface of the things that piss you off on a daily basis. I have a zanny redheaded 6 year old who snuggles and hugs, shocks me with his intelligence and teaches me about patience every day. I am lucky to be the mom of a little lovable, laughable, huggable and adorable 3 year old who tells me daily how much he loves me and cracks me up many times a day with his stories, humour and hilarious words. And I am blessed to be the mom of twin boys who love me here on Earth and in Heaven. I know by the adoring gazes, huge smiles, belly laughs, slobbery kisses, all around happy personality and mommy only looks I get from Cameron that Cole lives within him and is with me each day. Cameron is a miracle, he came so close to leaving us at his TTTS diagnosis and surgery, to being brain damaged then and again when he was anemic after Cole passed away, to being born too early and way, way to small when my water broke grams even surviving inside without any amniotic fluid for 8 weeks. He shows me how good God is and together with his twin brother, inspires me to be a better person.

I don't make New Year's resolutions but I am promising a few things this year that are super important:

I will find a way to channel my energy that is used for grief to find a way to honour my twin sons, their TTTS journey and Cole's passing. This might be a fundraiser, it might be support site for others or maybe a pamphlet to be handed to other parents when they learn they are affected by this awful disease.
I promise to breath deeply, smile more, laugh more, love more and snuggle those boys as often as I can.

I will worry less and enjoy the moment more.

Wow… how much of that has been accomplished. Wow. The holy spirit spoke into and through me this day and it set me up for goals that have been, and continue to be, accomplished. Tens of thousands of dollars for Mt. Sinai, involved with a foundation that offers support (and writes pamphlets), I began a TTTS support page on facebook that has over 1500 members, I have met so many amazing people and offered to support to so many as well.
2017 is sure to offer more opportunities to share Jesus with others. I’ve got the writing bug now and I’m going to keep this blog project going until the story is done. Well actually since the story is never truly done, I guess I’ll keep writing til my message of hope is clear.

Stay tuned…there’s more to come…

Friday, December 30, 2016

Stories of Hope - Jodie's Story 22

And finding that purpose and the direction I felt came from God and Cole took a big, huge leap about 18 months after they were born when we hosted our first fundraiser for Mt. Sinai. We were shocked at the support we received from our family, friends and community…and even more shocked when we raised over $3600. We cherished the opportunity to return to Mt. Sinai that summer to present this money to Dr. Ryan and to spend time with him. He was so very impressed with Cameron and even admitted that he’d never figured that Cameron would be as perfectly healthy as he was, that he would not have some delays and lasting effects from the TTTS experience. WOW! That was humbling…emotional to hear and confirming that we serve one amazing God!

I continued to work at finding peace and hope. I still found it so hard to just be at peace about the fact that my son was in heaven and I was here. I truly don’t know why I found it so hard but I was up and down so much in those first two years.

One Cole’s second angel day I wrote this….

So today is just a truly crappy day. It's been crappy since the moment I woke up...in tears. I hate this day and I am not sure I will ever NOT hate this day. I am very certain that in time this day will have joyful memories...of things we do, of things the boys do or say. But right now it just SUCKS!!! I often hear from people when I say things about Cole and our loss that we are so lucky we have Cameron. And I know this, appreciate this, cherish this. But today the joy of having a surviving twin is so heavily overshadowed by the loss of his twin brother. Even when I think back to that day there aren't really any joyful memories of Cameron that day with the exception of the words 'baby B is alive or baby B seems to be doing okay' but the reality was that he wasn't okay and was very sick and that day was filled with stress, pain, devastation and heartbreak.

I know that in time there will be happier thoughts of this day and that I will be able to cope better with it. I have hope...I didn't lose it that day or in the days that followed. I know that Cole is in an amazing place and that he is the lucky one. He will never live with stress, with illness, with pain, with heartache. I know he lives with loss, I know that he misses us all. But he has God and Jesus to comfort him and he is very aware of what the reasons are for him to be there and us to be here. And as life continues on and I can see those reasons more clearly I am sure that it will be easier for me too. But for now, for today, I am going to cry, I am going to feel a heart wrenching sadness, I am going to wish that life was different. It's just where I am, it's just who I am. 

Tomorrow is a new day.

And tomorrow was a new day….and each day that passed that holiday season I stepped a bit closer to peace. Until December 26…well actually maybe December 27th…when I learned that on Boxing Day God called another friend home much earlier than we folks on earth thought he should go. I am just going to share some of what I blogged about exactly 6 years ago today because I can’t rewrite it any better….
(the back story to where this starts is that Brian had been my friend for years and we’d had some deepish conversations while drinking but after our loss and then my water breaking he’d come with another friend to visit me in the hospital. The other guy friend talked farming with Geoff and stayed away from sensitive topics. But not Brian….)
He took a seat at the end of my bed, looked me in the eye and said "And how are you really doing?" And then he listened as I told him what was happening with my boys, no I guess I should say what had already happened to my boys. He listened as I talked about Cole and how I felt. He asked questions about what would happen now, what we planned to do. He told me, more than once, how sorry he was that this had happened to us and how hard it must be for me to be where I was. I remember saying to him that I knew that he hadn't had a walk in the park medically in years past (he had a kidney transplant years prior). He replied "oh that is nothing compared to what you are going through. I can't imagine the pain you are feeling right now, can't imagine what it's like to lose a child...I am so very sorry". 

Well tonight I say to Annette, to Katrina, to Cole (his son's name too)...I am so very sorry and I can't imagine the pain you are all going through. Today you said goodbye to an amazing husband, amazing dad, amazing friend. There will be a gap for years to come, a place that no one can fill. My heart aches for you. 

And to Brian I say thank you. Thank you for your smiles, your laughter, your zest for life, your determination, your dedication, your love. Thank you for making me feel important at times...without even trying, I'm sure. I will miss seeing your smiling face and will forever remember you. As I said to Annette, there are a great many things this side of Heaven we are not meant to understand and this is one of them. I am sure that you are sitting with my Cole on your knee sharing stories with him...stories of JF adventures with his mom and farm adventures with his dad, of things about this great community that we live in that he didn't get to be a part of and of the things that all great dad's tell kids...the things that you've told Katrina and Cole countless times. My little one needed a good father figure up there...I wish that you were here but glad that you can have that job in Heaven too.
Take care of him for me, give him a hug and tell him his Mommy misses him....
And Cole, you give a hug back to Brian and tell him that everyone here misses him too!
Today, near the end of the funeral they played 'Angels Among Us'. I had planned to comment more on this song but realize I don't need to...you can tell by what I've wrote that Brian was 'an angel among us' already, long before he became one on Sunday. He helped me in one of my darkest hours, he gave to everyone, showed everyone how to live and is in inspiration to all. And now I can only ask that the angels that live amongst us are here to help his family pick up the pieces and find peace. 

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

When life held troubled times, and had me down on my knees.
There's always been someone there to come along and comfort me.
A kind word from a stranger, to lend a helping hand.
A phone call from a friend, just to say I understand.

And ain't it kind of funny that at the dark end of the road.
Someone lights the way with just a single ray of hope.

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

They wear so many faces; show up in the strangest places.
To grace us with their mercy, in our time of need.

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

To guide us with the light of love.

And the reason I chose to share this today comes from the peace that suddenly surrounded me when I thought of Cole being gone. And once again I go to a past blog entry….

One more comforting thing I want to share. It’s personal and completely about Cole. Well not completely. I wanted to share about my intense feelings of things being okay and being at the greatest place of peace I have ever felt since he passed away. The reason... Brian, my friend who passed away a few weeks ago. Recently I have been feeling such an intense sense of calmness and peace when it comes to Cole and I really believe that is because I believe that Brian is looking after Cole...and maybe Cole is looking after Brian too. I think that in my heart I just needed to know that Cole was being looked after in Heaven, wherever that may be. That someone was stepping into the role of parent and raising my son for me. I know that God is there for him, but let’s be honest, He’s got a lot on his plate. I am sure that God has many great parents up there for Cole but it brings me great comfort to know that one of my friends will be giving the love that he had for his kids here on earth and doing the amazing job he did as Dad to them to my son. As much as it makes me so very sad that Cole will spend his life away from me and that Brian will not be there to see his kids grow up, it also makes me feel very much at peace to know that he is there for Cole and that they will have each other.

It was a very surreal feeling...to know that I finally felt peace at the loss of my child when other children were now heartbroken at the loss of their dad and a friend was so shattered at the loss of her husband. It still feels weird to know that this is where my grief changed so much for me despite it being 6 years later. And yet at the same time I see the journey that both Annette, Brian’s wife, and I have taken in our faith since then and I know that God has his hand in this, had this plan for our grieving hearts. Though we may have wished to have chosen a different route to take to get here, we are both loving living with a faith we never knew existed.  What an amazing God we serve!

Thursday, December 29, 2016

Stories of Hope - Jodie's Story 21

Life continued, healing continued and grief, too, continued. Most days were good despite my struggles to stay in the here and now… here as in the real world with real people not the online world of TTTS support. It was a struggle I had, almost an obsession or compulsion. I felt so drawn to the groups and message boards but could see that they were taking me away from my family. I just tried to put it in balance, especially when I went back to work, and prayed that I would find my way to helping others, helping my family and helping myself.
A very concrete validation to this immense time spent online came just before my boys first birthday. I began to discover one of the reasons I was drawn to TTTS mom’s and the sites I visited….because I did make a difference and so did my boys and the story of their journey. I made a connection with a woman in England named Tara through facebook. Her boys were not doing well, she was only about 22 weeks and had had the surgery but it was believed to not be a success. It looked like TTTS was reversing and it also looked like her donor, Noah, would not survive. When we first connected (she requested my friendship) I had no idea what to say to her or to her comments. She was blunt about how hard my life must have been after our loss and still was and that she didn’t know how she’d go on if, and when, she lost Noah. She didn’t understand my faith and didn’t really believe in God. She felt that He couldn’t be great if he allowed these things to happen to us. 
This is an actual message she sent me….
I’ve noticed you speak of God a few times. I have had mixed feelings on the subject of if I believe or not and even to what side he really plays with us. I have to ask, am I being tested? What could I possibly have done that makes my babies have to pay the price? Did you feel like you were being played with? Dangled hope in front of you and having someone threat to change everything. I can only imagine that after all you have been through you must have a huge hole in you somewhere or that to look as strong as you did you fill that whole with some short term answer? Thats what I’d do. I’d be fine from the outside for so long convincing the people not only am I getting better but moving on too. but in time I’d end up being a loaded weapon aimed at myself. if God is real he must by now know thats what I’d do. I don’t see what God is doing with me and matt as pro active. You could realy lose yourself in this kind of talk couldnt you. sorry :) i know i sound so negative on the subject of God but I believe we go somewhere when we die. I dont know where but I believe we do go. I noticed someone wrote a comment on your pics. saying that her boy and Cole are playing together. I need to believe that so much. if my boys don’t get to meet there mummy and daddy I need to believe that they didnt just stop existing. I need to believe that they get a second chance somewhere safe and loving. 

I explained how my faith grew because it HAD to. That I had to believe that Cole was in God’s arms, that he was at peace and that I would see him again. I told her that I knew Cole had kept Cameron safe and that I felt that Cole and God wanted me to continue my TTTS journey through the support of other families.

We continued to chat frequently and really connected. One night in late February we chatted on facebook and she told me that she planned to name her donor, her little baby who needed the help of my angel, Noah Cole. And yup, I cried, and continue to get misty eyed when I think of what an honour it is to have a baby named after your son in heaven. And a few days later, on February 26th 2010, at less than 29 weeks gestation, Noah Cole and his twin Jack made their arrival into this world. What a birthday gift for my boys that was. They had their struggles, life threatening struggles in the case of Jack, and their NICU journey was long. Tara didn’t have time to message me often but she would ask me to send Cole to watch over her boys and even had a friend message me when Jack needed to be transferred to a different hospital and was in critical condition. She later wrote me a letter to tell me just how important my friendship and my guardian angel was to their family. While the boys were in the NICU a hospital chaplain would come to visit them. She spent hours talking to him and sharing the ‘coincidence’ that happened when her boys were born on my boys birthday. She shared my faith with him and asked questions. And she allowed him to pray for her boys. She told me that if anyone had told her 6 months prior that she would spend time with ‘a man of the cloth’ she would have told them they were crazy but she welcomed the time with him.

And now Tara is a believer…or atleast she was in the months after her boys were born.
She and the father of her twins truly believed that God sent Cole and I to be there for them…Cole to hold their boys hands and me to provide comfort and strength. Their boys were born on Cole and Cameron’s birthday and one of their boys is named after Cole. You can’t tell me that isn’t God’s work, that He didn’t intervene and bring our families together. I made an impact in their lives but they made one in mine too. I had not been able to really face moms of identical twins that were survivors yet but Tara and Matt and their boys touched my life too. Many things have changed for both Tara and I since I originally wrote the above post but nothing can change the bond between us and I consider her to be dear and special friend.

And so that is why I was and am the TTTS mommy I am. I need to be there, I need to make a difference and I know Cole does as well…he has a purpose and a job too!!!

Wednesday, December 28, 2016

Stories of Hope - Jodie's Story 20

"We all need 'Kleenex and Candle' friends when we suffer a loss. Compassionate companions who give us permission to cry and offer a kleenex or their tears. When the darkness of discouragement comes they encircle us. Our heroes of hope light the way to brighter tomorrows and to the One who is truth and our eternal encouragement. And at the right season, we can pass on what we have received to other....a Kleenex and a candle" Kathe Wunnenberg

This quote came from the devotional book I was working through.  Bits of what I wrote below are my reflections from it and even quotes from it….with my additional thoughts. 

As the end of fall came I began to have more and more good days.  I found joy in all the ‘normal’ baby things Cameron could do and I kept busy with life looking after a baby and two young boys.  When I would talk to most of my friends they would share what their kids were up to, what they were doing, vent about life and problems etc and I would just sit and listen.  It wasn’t that I couldn’t relate to this kind of ‘stuff’ but that I just couldn’t find where it fit in my life.  These friends had been so supportive during the crisis. It seemed funny when I looked back to when this journey began and people told me all the time how brave I was, how in awe they were of me and how they looked up to me. I had so many people praying for us, emailing me all the time, writing on our caring bridge blog etc. But as time goes on those people seem to disappear from my life.  I felt like I no longer attracted the attention and pity of others. It was a very lonely feeling. It made me realize even more so that people just don't get it... they didn't understand that although we had lost Cole almost a year ago and the stress and strain of all that was the remainder of the pregnancy had ended with the arrival of our boys, it didn’t end for me there. I felt it would  NEVER end for me, that Cole would l forever be a part of my life and a part of my heart. I couldn’t MOVE on, I didn't want to MOVE on...I wanted to cope, to learn to live without him but it was not moving on...just coping along. 

I began to explore the idea and belief of God's will and learning to accept that things are God's will.
I had accepted that becoming pregnant with twins was God's will. I had accepted that our twins getting the rare and fatal disease, TTTS,  was God's will. I had accepted that losing Cole and keeping Cameron was God's will but I was finding it hard to accept that losing the ability to connect with those that I considered friends to be God's will.

What I was coming to realize at this point in our lives that although it may have been God's will to take Cole, it seemed to be the frame of mind of so many friends and family member to focus on the positives that came out of our journey, the timing of the diagnosis and surgery, the safe arrival of Cameron. It bothered me that they couldn’t see that there are negatives that are God's will too? I could see that, I could accept that and I was the one who probably hurt the most because of it. I knew that God doesn't only give us what we want, doesn't only give us an easy life. If he did than how would we build strength and character, how would we understand the trials that Jesus endured for us? Why was it that people couldn't talk about the sadness, the despair and the loss with me? Why did it have to be so hard to say to me "I am so sorry that God took your son from you and that you are hurting so but I know that it is his will and that someday we will all understand why it happened. Until then I am here for you, I will hold you and cry with you...I will give you my kleenex and I will be here for you always".

My loss had changed me forever. I no longer felt confident in what I thought was my journey of life. I didn't know where I was going or even where I'd come from at times. I didn't know who my friends were anymore...well that's not true. I knew, for certain, who the true friends are. I knew that they were the ones who talked to me about Cole and let me vent without reminding me how lucky I was that Cameron is still alive. But I didn't know if I should give up on those that who couldn’t seem to support me and didn't know how to support them either. As I said,  I was finding it hard to accept that losing my connection with those that I considered friends to be God's will. And guess what...I am still pretty sure it's not. I am pretty certain that God brought this situation to our lives and to our friend’s lives to bring us the opportunity to build stronger relationships.  At the time I felt such disappointment in those that weren't up for the challenge.  Now I know that even though they weren’t able to cope with what happened in our lives, weren’t able to maintain a relationship with us, they still watched us and they still learned from us.  I also now know that God had such plans for us when it came to new friendships and I would never have imagined I would have these amazing people in my life…but that’s a story for a much later post.
As much as I couldn’t determine why this had all happened, what I did know is that I appreciated life so much more. I knew that God had given me 4 perfect gifts, little miracles to love. I knew that I was meant to do big things...just wasn’t sure what they were. I felt very compelled to do something for others who suffered like we had, others affected by TTTS, others sent to Toronto to Dr. Ryan and even to other TTTS specialists in the world. I knew that God had given me the gift of the gab (as my family says) for a reason...I was and am blessed with the ability to write well and I wanted to use this gift. 

I wasn’t sure if I was ready to share my love for God and the insights I had about our journey with everyone. Not because I was afraid to be a 'public Christian' but rather because I was not sure what I felt and what I wanted to do with it. But I continued to tell everyone that there are a great many things this side of Heaven that we are not meant to understand but that we had better do as much as we can to ensure we get there.

I knew that tough days were ahead as I continued to find peace, hope…and purpose and I knew that the days leading up to the anniversary of losing Cole would be tough.  I knew tears would come easily as I remembered all that happened, days when I couldn’t hold Cameron tight enough and also days when seeing Cameron would just make me sob and sob. But I also knew that I would get through this because I was a child of God and He would see me through this. His love would surround and protect me. His love would NOT stop it from hurting, it would NOT make it go away, it would NOT erase what happened. But it WOULD make it easier and He WOULD provide me with people in my life to help me get through it. This much I was sure then….and this much I know now.  He has provided us with the most amazing friends who see our hearts, who love us through the good and the bad, who don’t judge or criticize but instead offer grace, support, assistance, insight and unconditional love.  I could not have seen, a mere one year after our loss, that the struggles with friends, acceptance, understanding and empathy would not be important in a few years.  I could not see that things would happen that would change my faith, push and stretch me, move me (physically in relation to churches) and bring me such amazing peace and joy.  But I did see the light shining through the clouds and I did feel certain that this journey we’d been on was a stepping stone to something great.  

Tuesday, December 27, 2016

Stories of Hope - Janelle Krey's Story

Janelle read my request for others to share their stories of what happens when God doesn't fix it, when He doesn't answer our prayers the way we thought he would.  She sent me a message and asked to share her story of her first loss. She also lost one of her twins in a later pregnancy and I hope that one day she'll send that story to share as well....

It was early one morning, so early the sun was not yet up. I had bought a pregnancy test the day before. I thought this is it! It is going to be positive! The test said early morning urine was best. I took it. There it was! A faint line. A really faint line! I was so excited! I woke up my husband! Honey! Look! It’s positive! See the line??? He couldn’t see it, but he believed me.

The first thing I did was research. Who was the best OBGYN in our area? I wanted them and I was stuck on them being female. I had several recommend one and I set up our first appointment. A few weeks later we ran into a good praying friend at the local Walmart. We told her our news! She asked to pray with us. We were happy to have her prayers! She asked for blessings and protection.

 A few days later I had a fever, chills, and cramping. We were worried so we went into the ER. They asked about how far along I thought I was and I said 5 weeks. The ultrasound tech said normally one could see the egg sac on the screen at 5 weeks, and that while she could not see it, it didn’t mean I was not pregnant, we could be earlier along than we thought. I was sent home and told that as long as my hCG levels doubled over the weekend, everything should be fine. We asked for prayers from our friends and family. I saw the lab tech on Monday. She took my blood. That afternoon I got a call. They had doubled! It was an answered prayer! They asked that I come in Wednesday to make sure and to take it easy.

Wednesday came and I went to the appointment. I felt great! God was good. Then came the bleeding and cramping. I hadn’t even been gone but a few hours from the doctor’s office. The PA called me back. She said I am pretty sure you are having a miscarriage, but we still need to make sure so come back in on Friday and have your blood redrawn so we can make sure your hCG levels are dropping back down to zero. I went back Friday, had my blood redrawn. I did not receive a call that day. I did not get one on Monday. I went the following Friday, had my blood work done again. Still no phone call. Nor one the following week. I assumed everything was good. We could start trying again in a month.

We took a vacation to see our cousins. One of our favorite things to do while there is visit the zoo. I was walking around when the cramping started again along with bleeding. I said this isn’t right. When we arrived home I called the doctor’s office. She said Please, come in right away for an ultrasound. I had my husband cancel his work. We went in. I could see the egg sac on the screen, but the tech was not saying anything except that we would want to see the doctor. We were shown to a room. The doctor came in. She said “You are still pregnant. But it is ectopic. The baby is in the tube. We have to go in and remove it and possibly your tube.” I said “Can’t we just reattach it in the right spot?” She said “No, once the blood flow is cut off, your baby can not survive. I need you to go to the hospital right away.”

 On August 25th 2011 our 9 week gestational baby along with my right tube was removed. I was devastated. My world as I had known it was torn apart. I questioned everything. Why? We loved that little baby, who we named Matthew Oliver. Matthew meaning gift from God and Oliver because at 9 weeks he was the size of a medium green olive.

I found some hope, I was able to get a picture of the baby. This brought closure. The doctor even said that we could still get pregnant. The remaining tube would do the work of both. I would still ovulate every month. From both sides. We would have to wait 3 months instead of the one.

I was able to take my pain and use it to ease others. I believe this is why God allowed this to happen to me. And why I survived it. 9 weeks is a long time to be pregnant with an ectopic. My tube could have ruptured and I would have died. Prayers and faith kept me alive. I firmly believe that if my friend had not prayed her prayer of protection, I would not be here today.