Stories of Hope - Jodie's Story 16

My faith didn’t seem very strong at times in those months in the hospital but it did give me a sense of hope.  Unfortunately I didn’t have the strength in my faith to trust God and not feel anxious. Often, on times where the stress of being away from home and feeling deeply lonely, the wish to move forward definitely won out.  It's not that I wanted Cameron to be very premature but I felt more ready for that to happen since he was at a safer gestational age and I was not so scared. I was caught between wanting to keep him in for so much longer and wanting to move on the next stage of joy and grief.

And so for the first time in a long time I actually prayed.   I asked God to help me, to give me a sign to show me that my boredom, homesickness and anxiety about the birth (and the desire to speed this process up) were selfish and not where my head should be. I didn't ask God for much in those days...I prayed in my own way but tried to only ask him to guide and help me. The night before the surgery in December, the night we learned about TTTS, I had asked God to be with both my boys and to save them both. The outcome wasn't what I asked for, for reasons I knew I wasn’t meant to understand this side of Heaven. So I stopped praying for concrete things like that because I didn't want to be disappointed and have my faith questioned in my head. I trusted in God to give me what He felt was best. But that day I asked for a sign and later on felt myself drawn to a place on a support message board that I hadn't looked at yet. It was the NICU support board and I read a post from a mom about her boys.

They were born at 31 weeks 2 days and her donor baby was 3 lbs 6 oz. He suffered heart issues and kidney issues at birth, was ventilated and then on the CPAP for a few weeks. Things seemed to be going well for him and then when he was 3 weeks old they discovered he had 2 brain bleeds and they were told his disabilities would be severe. This really hit home for me because at 31weeks 4 days Cameron was 3lbs 10 oz and he too was a donor baby who, like this little one was 'stuck' with no amniotic fluid. It made me realize that although everyone says 32 weeks, or close to it, is the big 'safe' place to get to in preterm births, it isn't always safe. That 32 week marker is based on babes who are 'just' preterm.....not ones compromised by other situations like TTTS or pPROM. There are no guarantees that if Cameron was born at this gestational age that his fate would be any different from this other baby's.

Those last two paragraphs are taken from things I wrote while in the hospital and I am once again struck by how the Holy Spirit was working.  He lead me to that website and to that story.  He answered my prayer with a sign and, to this day, it’s one of the most concrete signs I’ve ever felt I got from God. 

Soon it became time to actually schedule the delivery of my boys. It was hard to believe that this stage of our journey, all 79 days of it, would soon be over then and we could move into the next stage. I was so convinced that delivery and the next stage would mean closure and healing and, although I know they couldn’t have happened without delivery, I now realize how long of a process grieving is, how much time it takes to get closure. 

The last week of the pregnancy was such a mixed bag of emotions for Geoff and I.  I was so proud of Geoff for the strength and courage he had shown as he prepared for arrival of our angel and for the tributes we would make for sweet Cole. I was very certain that I could not do what he was doing with the strength he was showing. I was often told by friends and family that they are in awe of the strength I had shown during our journey but I was in awe of my husband and all that he had done and continued to do for our whole family. This journey had been the hardest thing I'd ever experienced but it had taught me so much about the love that we share with each other, with all of our boys and with our friends and family. It had also shown me the love that God has for us will always help us to endure all things.

For me I was just all over the place with my emotions.  I was excited to meet Cameron yet feared of what could go wrong with him still or how healthy he would be when he arrived.  I felt ready to deal with the next stage of grief but was also terrified of it. I didn’t know how I would deal with seeing Cole’s still body…especially having some understanding that it wouldn’t be in perfect condition, that time would have taken its toll on him.  I also struggled with the thought of him leaving me forever, of our time physical connection being over.  


The NICU doctors gave us a worst and best case scenario and said to plan for the worst and hope for the best.  They were very optimistic about his health and so I used that positivity to help me get through each day because I knew that worrying wouldn’t change anything and that the answers would be known soon enough.  

Stories of Hope - Jodie's Story 15

But then nothing happened.  I didn’t have any contractions and didn’t seem to lose too much more fluid.  Things were stable  and Cameron was growing and doing well.  And so there at Mt. Sinai and eventually at St. Joe’s in London I remained.  As things remained relatively stable physically, emotionally, outwardly anyway, I acted more stable as well.  It was surprising how ‘ok’ I seemed to the rest of the world.  I missed my boys at home terribly and I was very open about the sadness I felt about Cole at times but for the most part I kept up a pretty good face even when inside I was a mess of emotions. 

We went with the NICU team not once but twice as they prepared us for what life would be like for our premature baby.  There were many factors that would affect how well he did in the outside world and he was much more compromised than other babies of his gestational age because he was smaller and had endured two life threatening conditions inutero already. But we felt hopeful and calm.  I felt certain that Cameron would not arrive anytime soon and, in the end, I was right. 

I would love to say that things just got better and better while I ‘lounged’ in hospital, that healing and hope were found, that peace settled over our family, that we accepted this and were able to draw great strength from it.  The reality was I was searching so hard for answers as to why this was happening that I was oblivious to what was happening within my heart.  Moreover I was so sure I knew why it was happening that I was also oblivious to what I was doing.  You see in the early days of searching for ‘why God would allow this to happen to my family’ I had come to the conclusion that it must be to get our family back on track, to bring us closer and have Geoff and I work together better as parents.  So convinced was I that this was the reason for this journey that when Geoff would have stressful moments I would throw it in his face.  The poor guy was at home looking after a 2 and 5 year old most of the time.  He cooked for them, packed school lunches for Zack, washed all the laundry, including mine from the hospital and here I was telling him he was screwing things all up when he’d call me stressed out and sick of the kids.  While I didn’t need his stress put on me, I certainly didn’t need to be such a horribly unsupportive person. 

I struggled a lot of my mixed emotions and tried to write about them and, occasionally share them with those who were watching our story unfold from a blog I had set up.  I found it very hard to deal with the joy and the sorrow but moreover, I had a hard time with people telling me to focus on Cameron.  Here’s something I wrote about 20 days after my water broke….

I am having a sad day today and haven't posted because of this. Sometimes I think people don't want to hear how about the bad days but the reality is that this is my life and the life of Cameron and Cole. We didn't choose it to be this way, never asked for this to happen and yet here we are. Not every day is about Cameron and how well he's doing because there is also another life inside of me...a life that was cut short by a plan greater than any of us are meant to understand, but a life that needs to be honored too. By not acknowledging my sadness, my frustration, my sense of loss, I feel I am not paying tribute to that little boy that I wanted so badly. He will forever be my baby, forever be Geoff's son, forever be Cameron's twin brother, forever be Zackary and Brycen's brother and forever a grandson, nephew and cousin. He will forever be the guardian angel for our family and the little spirit that will guide Cameron along his journey, both inside while he grows and develops, and on the outside as he turns into the wonderful little boy that I know he will be.

Today I met with a social worker to discuss my feelings and to begin to prepare for the arrival of Cole and Cameron. It is very important for me to be prepared (for those that know me well, you know I am an obsessive planner) for their birth and to have plans in place to ensure that the things that are important to us then are taken care of. It will be a very joyous time for us all as Cameron's birth is definitely an anticipated one...all I need to do is to see how many people have visited this site, in the 2 weeks it's been going, to know how true this is. But their birth will also be a very bittersweet day for us too as it is the day of hello and goodbye for Baby Cole.

I was talking to our old minister Theresa yesterday and she and I were discussing my thoughts and feelings.  We discussed what I’ve said before, that there are just some things we aren't meant to understand this side of Heaven.  She totally agrees with me but says that it is a very hard concept to grasp.  I followed it up with the thought that our goal in life after such a loss should always be to live our lives in such a way as to guarantee that we get to Heaven...but so many people don't get that part, we live amongst so many hypocrites!!!

I am often told that God has a job for someone that he brings to heaven, especially before their time.  I'm not sure I always believe that God needed that young person or even my baby Cole in Heaven...but just that he had room for them there and opened his arms to them to welcome them home....and tried his best to open our eyes and our hearts to his love and his plan so that we could live a better life here on earth.  Don't get me wrong, I do believe he has important jobs for those angels but I don't think he decides on the day that child is conceived that he will take them back home at a certain time.  Sometimes bad things just happen, things that are out of his control...especially out in the world of man....but knowing that He is there for us in our pain, our grief, or time of loss/being lost is the most important gift you can give yourself.

I actually just came across this as I prepared for this post and, quite honestly, was blown away.  I guess that I’ve always felt that I was so far away from God in the most intense parts of our journey, that I wasn’t focused on anything but the situation.  I honestly don’t remember my faith being so deep and I really did think that my beliefs bout God’s purpose and plan, as mentioned above, were something that came about after I consciously gave my heart to Jesus.  But I realize now that the Holy Spirit was in me, speaking through me, each and every step of the way and that I was a lot closer to where my faith is now than I realized.  

Strories of Hope - Jodie's Story -14

And so life continued.  I began to have less and less long cries but there were no days without tears.  I was still so full of confliction and felt bipolar at times.  As more and more people learned what had happened it became just slightly easier to leave the house each day.  My first experience telling people face to face what had happened was brutal though.  It was two couples from ‘back home’ that I had not seen since the weekend I found out I was expecting twins.  It was a moment that caught me off guard as I assumed these people knew about our situation but a minute into the conversation it became apparent they hadn’t heard.  I did my best to explain but basically I ran from the table with tears in my eyes and then spent a miserable evening trying to keep it together (unsuccessfully) for my boys.

 

It just hurt me so much to tell them. It really was the first time I'd had to tell anyone in person I guess.  ....it's a lot different to do it over email or facebook. I said to Geoff after that I wondered if it would always be this hard and that I just felt so jipped for the rest of time.  I hated the looks on people’s faces because I knew it was the look on mine that put it there.  I didn’t know how to tell them and yet I knew I couldn’t just not say anything.  I was so tired of trying to keep it all together and so tired of letting it out too! But, I knew I couldn’t  shelter myself forever and also knew that I was going to have to tell people over the next few months and for the next....well rest of my life.... as a way to honour my wonderful little angel.

I plugged along, taking small steps one at a time, wondering how I would make it another 10-12 weeks without losing my mind.  I figured all that could go wrong had gone wrong so I should be good to go. How wrong I was…

Early in the morning of January 3^rd I rolled over in bed and felt a popping sensation and felt, well, wet.  I got up to check it out and went back to bed thinking it was nothing….til it happened again.  Eventually I could ignore the reality no longer, something was wrong and I needed to go the hospital.

After many hours, being sent back home because they couldn’t find anything wrong and my symptoms not subsiding I ended up being admitted to labour and delivery and prepared for a transfer to a hospital with a level 3 NICU.  Unfortunately or fortunately there were no open beds at the closest hospital to us and so I was placed in a system to be ‘accepted for transfer’ to whichever hospital had openings.  The doctor who was looking after me was awesome but was not optimistic on how far from home I’d be as the only hospital with openings so far was Ottawa.  I begged her to call Mt. Sinai and see if they’d take me.  She agreed but told me it was doubtful as they were reporting no openings either. 

God was obviously taking control of this situation too as not only did they call Mt. Sinai but Dr. Ryan was the high risk doctor on call and actually requested I be transferred there.  And so, after a very fast ambulance ride (that scared the crap out of me) I was back at Mt Sinai on 7 South under Dr. Ryan’s care again. 

The relief we felt at this news was almost impossible to describe.  Knowing that we would be back in the care of the man we considered our hero filled us with confidence.  Knowing we would be delivering our very tiny and very premature Cameron, in the place where his life had been saved not once but twice filled us with a reassurance that he would be okay.  Knowing that we would be returning to the place where Cole had gone to meet Jesus, and where, surely, some of his spirit would remain always was comforting somehow. 

Dr. Ryan scanned me later and said Cameron looked amazing....that he was recovering from the TTTS and surgery well. He weighed 1 lb 8 ounces now and had  no issues with any of his organs. Dr. Ryan concern was the reason for the fluid as there was still lots around Cameron and also Cameron’s size as he was still 10 days behind where he should have been.. He said the most important thing right then was that Cameron stayed in at least one more week as 28 weeks was a much safer time to deliver.  I was told that I would be on full bed rest, they would be doing a round of antibiotics to prevent infection and 2 steroid shots to help develop the lungs before Cameron arrived.  No one seemed to think it would be an ‘if’ but rather a ‘how soon’ on the arrival time. 

It was strange for me to back at Mt Sinai again.  I thought it would be so hard, I mean it was the place where my son lost his life.  But strangely I wasn’t as emotional about our loss as I had been just days before.  I think that was what being in crisis mode did to me. 

So many times in my life I had heard that when faced with a crisis, when in fear for your life of the lives of someone close to you,  that you develop super human strength, that you seem to be able to endure so much more than anyone thinks is possible, is normal.  I know for certain that people around us think thought this of me then and still do to this day.  But inside, where no one could see, I did not feel this way and to this day I do not really see myself as strong. 

Somewhere along the way I read a quote that said “It is in the knowledge of the genuine conditions of our lives that we must draw our strength to live and our reason for living.”  And perhaps that is what it is for me... my life is what it is, I cannot change that and I’ve  needed, at least outwardly, to draw my strength form that, from the knowledge that it could be so much worse maybe, and find my reasons for continuing with an outward strength that might surprise people.

But I will say that in the hours and days that had passed since TTTS came into our lives,  and to be honest, in the weeks, months and years to come, it was very difficult to remember this when I was alone.  And so I would take the fetal heart monitor and hook it up when the nurses weren’t around just to hear Cameron’s heartbeat, just to know that he had not joined Cole in Heaven.  I feared losing him with such intensity.  I feared his certain premature birth with a fear that shook me to the core.  And yet at the same time I was sure they are wrong. He wouldn’t be coming, it wasn’t his time, and it wasn’t time for the pregnancy to end....I was not ready for it to end.  And so it is from this belief that I drew my strength, this belief that carried me forward. 

Eventually it was determined that my water, indeed, had broken and that I would need to remain in hospital until my body or Cameron decided this pregnancy was over.    At any time I could get an infection or spontaneously go into labour and most do within 2 weeks.   If I made it past that 2 week mark then they would still monitor for infection. I would  continue to leak fluid off and on but as long as I remained infection free and Cameron showed no signs of distress then I would remain pregnant as long as possible. 

Some moments in those first few days were good.  I loved being at Mt Sinai and I had a great roommate to distract me.  But then the reality of it would rock me to the core.  We needed to be prepared for the arrival of our twin sons, sometime in the next few days.  It couldn’t really be happening, it couldn’t be almost over?  How would very tiny Cameron survive this? How could I handle meeting Cole? I was not ready for this and it was very hard for me to be so out of control of my life. I began to have a lot of stress and anxiety regarding the delivery of both of our boys and how we would deal with that. Every moment seemed intense and emotional.  I thought that we would have so much more time to deal with this but the reality is that the journey of Cameron and Cole Tummers seemed likely to soon take another path and move another step forward.

Stories of Hope - Jodie's story #13

 Admittedly though the feeling of joy, the knowledge of what a miracle Cameron was, the hope we felt for his future… so often those things were overshadowed by the pain and heartbreak we felt.  Most mornings up until the day we learned Cameron  was ok I had woke up in tears but that next morning I woke for the first time without crying and thought that it might be an okay day after all.  It didn’t last long as I stared at the Christmas tree and thought of all the Christmas’s we wouldn’t have with Cole.   Where I’d pictured two matching little boys sitting for photos under the tree or on Santa’s knee, where I saw my matching shepherds or angels in the Christmas pageant, I now saw an emptiness and felt a hole in my heart.  It just seemed so damned unfair that my two little boys wouldn’t grow up being the best of friends, that part of Cameron would always be missing.  It seemed like a raw deal that we wouldn’t have this little one in our family and wouldn’t be able to watch him grow and change.

I missed Cole so much already and I’d never even gotten to hold him yet.  I missed feeling him move inside of me, missed the worry of how on earth I’d make it work to feed two newborns, missed the thoughts of dressing them the same, missed the thoughts of the joy and uniqueness it would be to be the mom of twins. 

I didn’t understand why this had to happen.  What did I do to make this happen?  I knew that there was nothing I could have done to prevent it but part of me wondered if my sheer terror of having twins, of managing twins, of paying for the cost of twins plus 2 others made this happen.  Did God decide that I really couldn’t handle it after all?  Did me not being joyful and excited upon finding out there were two lives inside of me make him decide that it just wasn’t meant to be? 

I wanted to be happy that Cameron was alive and safe inside of me, I wanted to be joyful that I was going to have one baby, not no babies but then I’d feel guilty that I was not grieving for the child I had lost.  I wondered if I would ever really be able to grieve properly.  I had nothing physically to hold and it all seemed unreal that Cole, really wasn’t still moving in there.  I wondered if when it was all over and I was able to hold Cameron safe in my arms, would I be able to grieve for Cole then or would I even be able to hold him?  I wondered if I could handle that and how long was it going to be until that happened?  I didn’t want Cameron to be born then but I wanted to hold the life I’d lost, I wanted to cherish his little hands and feet, look into his little face.  But delivery meant the end, the final reality and I didn’t know if I could handle that.  What would it be like to hold my tiny still son?  How would Cole look?  What kind of a horrible mommy would I be if I decided I couldn’t look?  What kind of a memory would it forever leave with me to look? 

I feared what that time would be like for us.  I wondered if the joy of Cameron’s birth would overshadow the sorrow of the closure of Cole’s short little life.  It hardly seemed fair to him.  And in saying that, I wondered if the sadness and sorrow we’d feel at having the closure, at holding Cole’s still body and feeling the finality of it all would overshadow the joy I would feel for Cameron and his miracle birth.  It’s was all so mixed up in my head, so tough to imagine, so bittersweet. 

Christmas was pretty anticlimactic that year.  I didn’t wrap presents, didn’t do any baking or cooking, didn’t open any more Christmas cards and I didn’t want to see anyone.  I forced myself to go forward because I had to.  Zack and Brycen didn’t understand why I was so sad, they didn’t understand that the joy of the holiday was lost on me.  And so we carried on and I tried to keep my grief in check for them. 

Inside I was still so full of mixed feelings and still felt like I’d been run over by a train with the speed and devastation that our TTTS had entailed.  We’d had such a short time to come to terms with TTTS before we lost Cole and it just felt like I was completely lost and alone in this world of unknowns. I knew myself and knew that knowing my babies were sick and learning about this disease while it ravaged theirs and my body would have driven me nuts. I wouldn't have slept and I would have been obsessed with it. The only other stories I was reading at that point after the TTTS happened that sounded like mine came from the places to support those who lost both babies, often stillborn before they ever knew there was a problem. I could have found comfort in knowing we didn't completely run out of time and though it was quick it wasn't so quick as to not save Cameron. But I didn’t usually feel comfort in this, I just felt anger that it had to happen at all. I just wanted my baby back, alive, kicking and growing. I didn’t want to give birth to his lifeless body. I didn’t want to raise his brother as forever part of a team that's missing a key player. I wanted my life back. I wanted to stop crying at bizarre times and I wanted to stop this pain!!!!

I would love to tell you that it got better, that I settled into this world of twin loss and coped.  That might have come it I could have stopped myself form trying to find the ‘lesson’ on all of this, if I could have just accepted that there were things this side of Heaven that we are not meant to understand and if I could have stopped asking why.  Again, something that would take me, well years, to really be able to be comfortable with….that is  say that even now, as I write this, there are still days I ask why and wonder about the purpose in all of this.

The grief counsellor that we began seeing suggested that I write….write letters to both my twins, together and separate, journal, blog.  She also suggested I write letters to those who I felt had treated me unfairly or had minimized my loss.  I had a lot of anger towards a certain person who had hurt with me in how he had dealt with our loss.  She told me then, but it would take many months for me to really understand this and move on, that when you deal with a crisis it sometimes becomes easier to focus your feelings on one thing or person….to direct all the anger you are feeling at one person and that holds up your grieving process. It keeps you from moving forward, but oh, it is so easy to do!

Stories of Hope - Suetta's Story

Suetta is a fellow TTTS mom.  We met shortly after her TTTS journey began and have had some great faith discussions on facebook.  

We were so excited to be pregnant with our third baby. We had prayed for this pregnancy for about 6 months. I knew quickly that something was different with this pregnancy. I was sick, which I hadn’t been with my two other pregnancies, and I just felt different. I wasn’t sure how far along I was, but knew I was feeling movement early. I had an U/S to see how far along I was and I was 10 weeks and they also saw 2 babies!! We were so excited! But they were having trouble seeing a membrane that separated them, so I had to go see a specialist. They found the membrane and I thought things would be fine. At 16 weeks, we had another U/S to check the babies because the specialist said that around 16 weeks is when you can see the TTTS. The U/S confirmed they did have TTTS, but it was mild. We had weekly U/S from that point til the end of the pregnancy. The boys were growing at the same rate the whole time. At 20 weeks we had a growth scan and both looked great. Fluid levels were off, but their bladders were always visible. At 21 weeks, we saw our donor twin swallowing on the U/S. What a special moment that was and what a special memory my angel allowed me to have! I relaxed after this appointment and thought things were great. U/S one week later at 22 weeks, changed my life. I knew right away that something was wrong. I could see by measurements that the donor twin had not grown at all and the U/S just didn’t look right. When the U/S tech went to get the doctor without finishing the U/S, I knew but didn’t want to believe what was happening. The doctor confirmed that one twin no longer had a heartbeat. The other twin looked good, but the doctor said the next 24 hours would be the most critical. We had another U/S one week later and our surviving twin was looking great. We knew each week , that I could go into labor at any time. At 29 weeks and 3 days, I went into labor and delivered 2 beautiful baby boys. One pink and crying, and one gray and still that already had gained his wings. This experience has changed me in so many ways. I could not have survived this loss without having God to help me through.

I was born and raised Mennonite, so church and God have always been a part of who I am. Growing up, I did not have many friends, and often felt invisible. I was taught that God is always with us, but didn’t understand what that meant and didn’t feel it. I accepted Christ at the age of 12 and found a peace that I never could have imagined. And then the crazy teenage years started and I wanted to fit in. I struggled with staying close to God. My parents have always lived out their faith and showed me to believe that God is always in control. When I was around 4 years old, I had a cousin that was stillborn, and I remember that even while we were grieving, there was an unexplainable peace that surrounded us.

I was very blessed to not have much loss in my growing up years. I struggled a lot with not fitting in at school. I now see, that I started to believe that I wasn’t good enough, even for God. This led me to search other places to find happiness, and neglect my relationship with God.  I’m so thankful that before our loss, we had found a church that had helped me get my relationship with God back on track.

When we started this journey, I was blissfully ignorant of how quickly things could go wrong. I prayed every day for our babies, and fully believed that we would have a good outcome. The day we found out we lost our one baby, I wondered where God was. Did I not pray enough? Was it because I wasn't living a good enough life? What had I done wrong to deserve this? What was I supposed to learn from this?

God felt so far away.

I will never forget how God showed himself to me during those dark days after our loss. Whether it was a phone call, a card, a meal, or just someone giving me a hug, it was like God was sending me love in so many ways. And then I remembered.......My biggest fear after finding out about the TTTS was, if it came to the point of needing surgery and then we lost one or both, would I feel responsible for the loss? It sounds crazy even to me now, but I didn't want to have to make that decision. I believe with all my heart that Trevor, our angel, gave his life so that his brother Travis, our survivor, could live.

My faith has increased significantly since our loss. The way that God provided for us during that time was unlike anything I could have imagined. My husband lost his job one week before we delivered our babies at 29 weeks. (Trevor had passed 7 weeks before we delivered). At the time, I thought that was the worst thing that could have possible happened. How would we support our family with a baby in the NICU without any steady income? But each week, we had what we needed to keep going. God always provided. With my husband not having a fulltime job, it allowed us to spend more time together and at the hospital. Our families were a huge help during this time also and were a huge support system for us.

My hope came from my faith that my parents have shown me from the time I was little. For the first time in my life, I FELT my faith and saw God in ways I never had before. Today, I still rely on God for my hope. I see this loss not as only a negative, but I see so many positive things that have come from it. Of course I would still love to have both my boys here to love and hold, but knowing that my angel is in the arms of God and will never know pain or sadness is a comfort and blessing.

 During our TTTS journey I found these scriptures helpful and encouraging:

John 11:35- Jesus wept- even Jesus knew sorrow and how much more he must certainly care when we hurt!

John 3:16-For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life....God knew the pain His son would suffer and yet He still gave him up because He loved me so much. And He understands how much I hurt because He gave up His son too.

If there anything I could tell someone going through a journey where God doesn’t answer their prayers the way they thought he should, where he doesn’t fix it, where all the hopes and dreams you believed were your destiny aren’t at all what the outcome is to always keep trusting and praying. God is painting a picture for us and right now it might not look pretty, but when he is finished, it will be beautiful beyond anything you have ever seen. When you feel like God is invisible or has forgotten you, find someone that can encourage you. I found for me the best way to see God, is to do things for other people. When I bless other people, I always find myself blessed.

Stories of Hope - Jodie's Story 12

I would wake in the mornings and somewhat forget what had happened and be in a blissful happiness.  Another day (or minutes later) I would remember and would sob and ache for all that we had lost.  It was in one of these quiet morning times that Geoff wrapped his arms around me and just held me. He hurt too but all he wanted to do was take my hurt away.  He began to tell me about what my sons looked like inside of me and after calling them baby A and B a few times we realized that, though we had names for them, Cameron and Cole, we had never named each individual baby…our little angel baby and his brave surviving twin had no name of their own. And so through our tears we decided that our little baby B needed both names just as he would need to protection and guidance of his guardian angel twin to get him through the difficult days ahead.  And we forever memorialized our little Cole Edward Ryan in his twins name, Cameron Cole Gregory. (and at that same time forever honoured the man who did all he could to save both our boys, Dr. Greg Ryan).

In the days, weeks and even months after we lost our baby I felt caught in a time warp of sorts.  I could not go back and feared going forward.  So many mixed emotions travelled through me each and every minute.  There were few moments where I was truly in any one state of being.  It was almost like being in vortex, swirling around and around, being able to see the world around me but not being able to stop and touch it at all.  

I wanted to go back in time to before he left us but more over I wanted to go back and change so much of how I’d reacted and conducted myself in the days and  weeks after I learned about the two of them.  It was a feeling of deep regret and heartfelt longing.  For so many reasons I was afraid of the future.  I was afraid of what the future held for Cameron, was fearful of how I would handle meeting Cole and wasn’t even sure I could handle it at all.  And I was most fearful of the moment when I would no longer be pregnant, when I would give birth to them both and I would no longer have Cole with me.  I would no longer have any physical connection to him, not ever again.  I dreaded the end most of all.

I was sore and uncomfortable and spent a lot time in disbelief and wonderment of it all.  I tried to count my blessings and they were many....the timing behind all of this was amazing.  I mean that ultrasound wasn’t even supposed to have happened.  They could have waited and saw me in London first, they could have chosen to wait a few days for surgery.  It was so hard to know how to grieve when I still had a life growing inside of me.  I knew that I needed to take very good care of myself right then and grieving takes up a lot of energy but dammit that was what I wanted to do!

Telling others was very hard for us.  Geoff did most of the calling, I sent emails and Facebook messages, impersonal I guess but it was all I could handle then.  It was weeks before I had to verbally tell anyone then news.  Friends called, dropped by, brought food, offered help and sent cards and flowers.  No one knew what to say really though but I do remember having a very wonderful and spiritual discussion with Theresa, our wonderful minister friend.  She touched on areas that others hid from.  When I said that I would always know what Cole would look like she said what was in my heart but had not been on my lip s… ‘but does that make it easier or harder?’

I think one of the hardest things for me then and for months to come was guilt.  I was overwhelmed with it at times because this wasn't a planned pregnancy and I had made that VERY public. When I found out I was having twins I was very scared, upset and really not looking forward to it. Eventually that passed to a stage of 'I want them but am sure I can't do this' and then finally to ‘I am scared but oh so very excited’…but that was a stage that I’d only recently gotten to. Now I felt like I brought this on. My realistic brain said I knew I didn't but trying to tell that to my heart was so very difficult.  At the time I was a firm believer that everything happens for a reason. So then I wondered again...is the reason that I just couldn’t handle twins. And then I’d feel guilty for even allowing myself to go down that road. 

It was a terribly confusing time for me, I was just so confused and lost.  I wanted to pray but I didn’t even know what I was praying for.  I didn’t really know where to turn to for support either.  All the baby loss support groups and sites  were for full losses…. when It’s all over and you begin to pick up the pieces.  I couldn’t even begin that stage; this wouldn’t be over for months. I was still carrying a baby who was alive. 

Eventually I was able to find some amazing support on two places on the internet; The Fetal Hope Foundation and the Twin to Twin Transfusion Foundation.  I will tell you with definite certainty, if it wasn’t for these groups, for the parents I met on these groups I would not have survived the journey with my sanity intact.

Christmas, it can be said, is the season of miracles.  Over the years I’ve read many stories of miracles especially those that happen at Christmas.  It is also a season of joy and hope.

That Christmas, most especially the day we travelled back to see Dr. Ryan, we really felt we understood Christmas miracles, fully comprehended what joy meant.  Just 8 days since we’d made our first trip to Toronto and Dr. Ryan, we made our third trip. We’d been down two days prior and had the MRI done on Cameron’s brain and now ventured back, in the middle of a huge snowstorm that closed most of the schools in southwestern Ontario, to see Dr. Ryan and check on his progress.  We were nervous, we were stressed and we were tired. 

We arrived to an overwhelmingly huge waiting room, unsure if we were in the right place, unsure of what we would find out.  The most overwhelming part of the wait was looking around the room and seeing so many pregnant women and wondering what brought them there and knowing that many were there, carrying multiples, and doing great.  Tears came so easily still and I hated the feeling that I had that people were staring at my watery eyes. 

And then, after many scans by the nurse, we were taken to a room to meet Dr. Ryan.  His demeanor in his office was very different then the man we had met in the middle of our crisis.  He asked us how we had been doing.  When we admitted to Dr. Ryan that we were feeling more than a bit shell shocked and overwhelmed he stopped looking in my chart and he put his hand on my arm. 

The compassion in his voice was so geniune as he told us that it was going to feel like that for awhile and that he was so sorry that things didn’t work out the way we thought they would.

His voice was full of empathy and gone was the business only image that he had portrayed to us so much when we last saw him.  Though we’d felt very comfortable and confident in his hands the previous weekend we now felt like we were a part of his family.

He was eager to get right to business and take a look a what our ‘young lad’  was up to.  And then after some he stopped, looked up at us and smiled and told us that our ‘young lad’ looked great, exactly like he should for a 24 weeker.  He was doing better than could  be expected and we just needed him to grow now.

You can’t imagine what joy came over us.  Cameron was going to be okay, not just alive and well, but he was going to be okay.

Stories of Hope - Christina's Story

Christina and I met on a facebook group for TTTS loss.  We've talked so much over the years about how hard it is to remain in the faith at times, how hard it is to trust God.  Both of us have had similar struggles in our marriage and home life and have spent much time messaging back and forth about them.
Last year I felt God calling me to start a Christ focused support group on facebook for infant and child loss.  When I thought of who I wanted to help look after the group I immediately thought of Christina.  She's done so many awesome things for loss moms and she was so eager to offer support to others.  Here's her story....

My journey of faith started when I was four years old. I knelt down with my Mom, near the sliding glass door to our patio and prayed to Jesus. I asked him to come into my heart and I promised that I would live my life for him.

At first it was very easy to keep this promise, I was surrounded by my Christian parents in a loving home, and their entire social life was centered on our church.

Things became more complicated a few years later when we moved from our house in California to rural Pennsylvania. I watched my mom slip into a state of depression as her marriage began to unravel while at the same time, my Dad became wild. He denounced his Christian faith, saying he never really believed and started to go his own way.

My home life was full of contradiction. Spending time with my Mom consisted of going to church or attending events held by the churches single women’s group. My Dad let her be the primary disciplinarian, since he was rarely home, and I was held to a very strict standard of behavior; no cable t.v, no trick or treating, no secular music.

On the weekends my Dad would make an effort to spend time with me. We would take trips to New York City, have dinners out and go on shopping sprees. He would also constantly push against my mom’s strict rules.  He bought me a stereo so I could listen to rock music, and even took me to movies that she had forbid.

To a young mind that was unable to process correctly, the difference between my parents seemed clear. My Mom was strict and boring and my Dad was a really good time to be around. When I grew up, I wanted to be just like him.

By the end of eighth grade, I convinced my parents to let me leave the Christian school where I never fit in, and transfer to public high school. This was the best thing that could have happened to me because I finally began to make friends. I wasn’t a horrible teenager, but this is when I started making some poor choices. Every compromise made took me further away from God’s will.

High school was followed by college in New York City, where my roommate (who was also a Christian) and I occasionally attended church and also became part of our schools Christian organization. We never abandoned our faith, or denied Christ, but we weren’t living for him either. I certainly succeeded at becoming a really good time to be around, and by the end of the four years I do not think anyone would have known I was a born again Christian.  

I graduated college and found a job but continued to surround myself with the wrong people and make bad choices. Eventually this path left me jobless and living back in Pennsylvania with my father, where I became depressed and engaged in many self-destructive behaviors. As I look back at this point in my life, I can see many times where God tried to get my attention. There was the job loss, a very painful break up, even a car accident, but nothing did the trick.  I managed to pull myself together and move back to the city but still this was all through my own strength and not through God.

At the age of 31 I fell in love with someone I had known since high school, we moved in together in New York but eventually decided to move back to PA.  Here we became engaged, bought a home and had a wedding.

I was casually attending a church but still not committed. The turning point didn’t happen until I was 34 years old and became pregnant with identical twins that became sick with a condition called twin to twin transfusion syndrome. During this time I had several conversations with God that changed everything and brought me back into his will.

The day we found out the twins were sick, I had an amniotic fluid reduction. The fluid was sent to a lab to be analyzed and one of the conditions they were testing for was Downs Syndrome. My husband Jason and I were scheduled to go to Children’s Hospital of Philadelphia two days later for a full day of testing. Conversation on the way down centered on what might be. Jason, who is an unbeliever, expressed his desire to terminate the pregnancy if the twins were going to be mentally disabled. The discussion became heated and finally I told him that I was keeping my babies, with him or without him. And then I silently told God that I meant it. I promised him that I would deliver and raise my children (alone if need be) and be content with whatever he gave me.

Growing up I never understood why preachers would warn us about marrying an unbeliever. I thought it only came down to one person going to church on Sunday while the other stayed home. I didn’t realize that some cold October day I would be walking into one of the best children’s hospitals in the world, wanting nothing more than to hold hands with my husband and pray. Instead I prayed silently and after a full day of tests it seemed that God was going to answer my prayers the way I wanted. The tests for downs came back negative, both boys looked well and no fetal surgery was needed.

On November 26^th the perinatologist told us that he was confident we were out of the woods and that we only needed bi-weekly appointments. The next appointment was scheduled for December 15 2010. On this day I went to my appointment alone, confident that everything would be okay but it was not. The scan of Chase, Baby A, went well but the ultrasound technician was unable to find a heart beat on Tyler, Baby B.

 I was admitted to the hospital where I would spend the next 2 ½ weeks. I had many visitors, but most of the time I was alone, listening to the sound of Chase’s precious heartbeat, and talking to God. I told him that I wasn’t’ mad at him for taking Tyler and that I would still praise him and serve him if he took Chase. I spent time reading and studying my Bible for the first time in years. A co-worker sent me an e-mail with the verse 1 Peter 1:6 and I read the entire passage and highlighted it in my Bible. I kept the promise close to my heart and read it often throughout the rest of my ordeal.

1 Peter 1 6-7

⁶ So be truly glad.^[a] There is wonderful joy ahead, even though you must endure many trials for a little while. ⁷ These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

I was discharged from the hospital on December 30^th 2010. I carried my boys until 32 weeks gestation. They were delivered by C-section on January 25, 2011 almost 2 months before their predicted due date. Tyler was born sleeping and Chase spent 1 month in the N.I.C.U before he was able to come home.

The months and years that followed were not easy. I didn’t realize how deep into a depression I had sunk until I slowly started to come out of it and began looking back. But even though times were hard, something amazing was happening. God was working in my heart and making me a better person and a stronger Christian.  The changes came slowly and easily. I stopped doing some things that I knew were wrong and stopped hanging out with some people who I knew were not good influences. I found myself wanting to talk to God daily and be in his will.

When I talk to people who are suffering, I tell them that loosing Tyler was the worst time of my life, and the time in my 20’s when I was jobless and living at home was the second worse. But if I had to live one of them over, I would pick loosing Tyler because it was a time full of love and light while the first period was surrounded by darkness.

If you have read this blog post and it hits home to you don’t be scared to talk to God. He knows where you have been and he is waiting for you to return to him. There doesn’t have to be a big drastic confession or prayer at the church alter (unless that is what you feel you need).

Just as I was introduced into the kingdom of God with a simple prayer, I was welcomed back many years later with more simple prayers.  These prayers allowed him to start changing me and he will do the same for you.

2 Corinthians 5:17 Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things have become new.