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.

Monday, December 26, 2016

Stories of Hope - Jodie's Story 19

I spent a lot of time asking questions and playing ‘what if’ games and asking why.  What if we chose to wait and deliver as soon as they were big enough?  What if we’d gone to London for a better scan and been seen by a high risk doctor?  Why did Cole live as long as he if he had so little share of the placenta and such a poor cord insertion?  Why did Cole die so quickly?  Why did TTTS come out of nowhere and progress so rapidly?  And I also asked why I didn’t lose both?  Why was Cameron spared and born with so few complications?  Some of those questions have answers now and others never will.  I’m glad I asked them, glad I wrote them down. It was the start of a process that took me into researching what had happened and learning everything I could about our case as well as TTTS in general.  I soon began to realize that there were so many things against us, against Cole, that we really would not have had much chance of our outcome being any betterbut could have had a much worse out come if we’d made different choices.

Learning all that I could changed things for me but also learning that I had never had control over any of this anyway also changed things.  It didn't matter that I wasn't overjoyed at the news of twins, that I didn't spend the time with Cole that I would have liked or that sometimes I knew it is easier. The guilt didn’t matter because I couldn't change anything. I could be angry about it if I wanted but anger was so powerful...and doesn't change things either. I didn't get to choose this for my family but I did get to learn from it. I began to see that  we MUST be happy with the gifts God gives us...there is no point in not celebrating the gift of life inside of you when you find out you are expecting a baby.or two that you weren’t planning...God put it there for a reason. I know that I didn't will Cole to die because I was scared and that God didn't take him for that reason either. I don't know the reason but it wasn't to 'teach me a lesson', punish me for my sins or because he thought I couldn't afford 4 kids. He doesn't work that way and I needed to stop ‘working’ that way too.

From that I realized that I had no right to pass judgment on anyone. I didn't have the right to say 'why did that woman get to keep her twins', 'why does that teenage mom who can't afford a baby have one', 'why does someone who doesn't care about her kids get to keep her child and I lost mine'....because I don't the right to question His actions!!! He has done this for a reason of his own and in time it may become clearer to me or it may take me till I reach Heaven to truly understand. Either way it is His decision.

There was much work to be done and times I felt very alone and distant from God, times I just couldn’t find peace with what had happened and times I just wanted to scream about so many things.  I began to forgive myself for actions and reactions I’d had as well as my body for failing me and my boys.  I began the process of forgiving others for things they did that hurt or caused me anger and negative feelings towards them. 

And then I hit a section of this book where I had to forgive God.  Initially I didn’t really think this was a big deal as I hadn’t actually felt that much anger towards him but as I began to explore this I realized I had lots to resolve yet

The author shared that "The concept of 'forgiving God' makes me feel uneasy. Yet anger and bitterness toward God are far more common than most would like to admit. If we are honest about our anger toward God and admit how we feel that God has let us down or has been unfair; then we can begin to heal."

And for me, it's wasn’t about forgiving God because I believed that was keeping me from a closer relationship with him...I'm wasn’t sure I was at that place yet as a Christian. For me, forgiving God was more about moving forward in healing....being able to cope with the pain and loss and seeing the positives in everything that has happened.

And so I wept and wept as I read and reread this letter and then burnt it and blew the ashes up to heaven.

God;
You let me down. You didn’t save Cole when you could have. You could have stopped TTTS from happening to my boys but you didn’t. You could have made the placenta perfect so that no growth issues would have happened but you didn’t. You didn’t have to separate my boys forever, you didn’t need another angel in Heaven. You took my baby from me before I could ever enjoy seeing him and feeling his soft sweet skin. You allowed me no time to be his mommy and to be the mommy of living twins. You did this to me and I have no idea why.
You could have intervened and allowed Geoff and I to have time with both our boys and have moments to hold them together. You could have given me courage, peace and strength to hold, touch and kiss Cole.

You could have allowed me to enjoy the pregnancy with my twins and eased my mind about my stresses but that didn’t happen.

If all these horrible things had to happen than the least that could have happened was for me to remain here at home with my other kids until it was time for Cameron to arrive.but that didnt happen either.

I am so damn angry sometimes, I want to move on but really I just want it all to start over again. I hurt and I ache and I want my baby here with me. It’s been months since he died, months since I last saw him and yet it feels like just yesterday that I heard those fated words.

Take this anger and this blameI offer it up to you and ask that you forgive me for feeling this way. Help me to release to You my unmet expectations so that I can continue to heal.

And guess what, it actually made me feel so much better and God’s work on my heart continued.  I knew, in time, I would get through this dark hole I was in and I would see the lightit just would take patience and time. 


Sunday, December 25, 2016

Stories of Hope - Jodie's Story 18

Merry Christmas Everyone!  I sure hope you aren't reading this today.... well unless it's after you've opened all the presents, ate all the food, lived, laughed and loved on this day of our saviour's birth!
I've really enjoyed sharing this blogging project with you...and I'm not done.  I'm going to try to keep going until the most important parts of the story are told...when hope was found in Jesus in such a big way.... it's months from where we are in the story but I'll get there.

And so life continued with a premature, need baby and two rowdy growing boys.  Life was busy and that was good.  But as time moved forward I found I wasn’t moving with it.   Tears came pretty easy at times because the more fun Cameron was and the less work he was the more I realized (and had time to realize) how much we had lost.  I was missing Cole so much those days and wished so much that things could be different.  It just seemed so unfair.  I tried to tell myself that it could be so much more unfair as the reality of how close we came to losing Cameron too was always there.  Most days that helped a lot but sometimes even that couldn't stop me from being really sad and frustrated.

Our home life was very up and down emotionally. I am sure Geoff was very frustrated when he would come home from work and find me at the computer with no supper made or very little done.  My focus was on connecting with others and looking after the boys but it wasn’t on him.  I’m sure we fought a lot in those days but I honestly don’t remember it being that bad then.  What I do remember was Geoff being distant and exhibiting some strange behavior.  I brushed it off for a long time but one day, while doing some banking and paying bills, I discovered a pattern of withdrawals from the bank by Geoff that I didn’t understand.  When I confronted him he didn’t understand either.  Well actually he understood and could remember taking money out but he had no memory of how much or where he spent it at times.  He also couldn’t account for gaps of time.  I became very concerned and turned, of course, to Dr. Google.

After reading and number of articles online and doing some online quizzes we both felt he was exhibiting some symptoms of some mental health disorders and knew that we needed to take this information and observations to our doctor.  Within a few days we saw her and she diagnosed him, unofficially, as bi-polar and referred him to a psychiatrist. 
He began seeing this psychiatrist and started a cocktail of meds that should help.  Though he saw this doctor and a few others over the course of the next months, the dramatic change I hoped for didn’t come.  But atleast we had answers right, at least we knew what was wrong.  Or so we thought.  It would be YEARS before the right diagnosis and right help would come.  In the meantime we just kept tiptoeing forward…and tip toeing around each other.

 I was still struggling…a lot and about the same time we discovered there was something going on with Geoff’s mental health, I began to search for peace, search for help to find peace.  My bestie, Charlotte, had sent me a book called ‘Grieving the Child You Never Knew’ when I was in the hospital.  It was a devotional to help you work through your feelings about the loss of a baby through miscarriage, stillbirth or at delivery.  I had tucked it away at the time because it treaded on areas of faith that I just wasn’t ready for.  But by August I knew something had to change.  Below I’ll post a few excerpts from it but if you wish to read more of that early journey into faith, and actually see how much my faith really hasn’t changed, the first post starts here….


I've been doing a lot of soul searching as I struggle to deal with my grief over the loss of Cole. TTTS robbed something so amazing from my life and I am fighting so hard to get it back. I have no idea how to do this and some days I am not even sure I want to, it hurts so much. I decided, after reading some of the things that I wrote when Cole first passed away and while I was in the hospital, that I needed to get writing again.
Over the past few weeks I have felt like I am missing something. I know what part of that something is, my dear sweet son Cole. But I am also missing a focus and a part of myself. I am not sure I'll ever be the same person I used to be. And I feel like saying 'And why should I be. For anyone who's looking for the old me...well you've come to the wrong place.' I changed forever the day the echo cardio doctor told me "Your baby has passed away...I'm so sorry Mr and Mrs. Tummers but your baby died'. I'll NEVER EVER get over that...how can I. But I also need to remember that it wasn't the end of the world, that life goes on after death. That Cole is in the most amazing place. 
Who am I to want to bring him back from there? Why should I think that he would want to come to this world filled with the trials of life when he can be in a place where everything is perfect? Where there is no pain, no sadness, no financial worries, and no evil. Sometimes I think, as do many others that by losing a child you never knew, by that child not living a life here on Earth that we and they lost out...all those things we could have experienced together. Oh what I wouldn't give to have my son here with me giggling and smiling like his twin, watching his first steps, hearing his first words, seeing him make friends and go off to school, graduate, get a job, get married etc. But those are just the positives...we all know there are so many tough things life has to dish out. I know because I've lived through so many and I am just one person. Who wouldn't want a life of no worries and pain for their child and what right do I have to deny my child of that.....and so we're back to finding a way to let Cole go, to feel good about his new home in Heaven and to move on and make my life what I want and need it to be.

Through the book I realized a few things.  One was that I was being open about my grief, talking to anyone who would listen, for selfish reasons at times… I wanted attention, I wanted pity.  It wasn’t so much that I shared my grief with them but rather that I shared what had happened and, well, waited for the pitied looks.  When I first discovered this was what I was doing I was shocked that I could be so selfish.  In time I learned that it was not only a coping mechanism but it was also a way to take attention away from how much I was struggling inside to make any sense of what had happened or to find any sense of peace and hope.   By being open about what happened, about the things that set me off and behaving in the way I thought people expected me to, I was actually pushing my real feelings aside. Why did I feel the need to worry about what others thought? Why couldn’t’ I just say 'I feel so devastated about the loss of one of my twins but it's overshadowed daily by the feeling that I couldn't have done it anyway....I could have never handled being a twin mommy and that is why I think this happened".

So what did I hide behind most, what was holding me back the most...guilt.

And so I worked through feelings like anger at others for not validating our loss by saying things like ‘well atleast you didn’t lose both’ or ‘it’s much easier since you didn’t get to meet him before he died’.  I worked through my guilt about feeling like this happened because we couldn’t afford two babies or I couldn’t handle two babies (and the anger, again, I had at the people who actually said such inconsiderate things to me…it’s one thing for me to think it but a whole other thing for someone you call ‘friend’ to say it).  I worked through feelings of intense sadness at all that we had lost and I learned about the frustration that was so consuming when I just couldn’t find the old me and didn’t know who the new me was. 
I wrote these as words to friends and family…

 Let me be sad, mad, frustrated, confused and guilty. Let me cry on your shoulder and be quiet in peace. Let me talk when I need to and scream when I want. Please just let me grieve for all the things we lost by losing Cole, by losing Cameron's beautiful twin brother.
I learned it was ok to take time for me, to zone out and just let myself feel what needed to be felt.  I learned being angry at God was ok, was something He could handle.  I also learned being angry at the doctors who didn’t fix things and the people who weren’t supportive was also very natural.

One of the greatest things I learned was this…

‘it never occured to me until reading this devotion that God understands my suffering. He knows what it is like to lose a child. Jesus understands my suffering. He endured physical and emotional pain, torture and death even though he pleaded with God to take his cup of suffering from him. He willingly accepted his suffering if that was God's plan. Did he deserve to suffer, to die? Of course not. None of us 'deserve' the suffering we endure, none of us are being punished by God and it isn't a sign of sin. It isn't God telling us to 'clean up our act'.
At first that was sort of how I thought of our journey. Not as a punishment but that God allowed this to happen to us because He wished our family to learn something from it, to grow from it. I remember getting angry with Geoff when he would call me and vent about how stressed he was at home with the boys. I kept saying to him "This happened to us for a reason. I think it's supposed to make us stronger and better as a family and now I don't know what to think because it's not making us better but worse."...Yup I really thought and said that. First of all I realize now how selfish I was being towards the rest of my family...I wasn't suffering alone but sure acted like it. And secondly, why on Earth should I have thought that 2 months after the saddest day of our lives we should be miraculously changed and functioning like this sitcom family, I have no idea!!!

I realize now that God didn't allow to happen for that reason but that He's here to take our cup of suffering, to help us in our time of need and most likely help our family grow, strengthen and comfort one another. He wants to walk with us through our pain and He wants to give us hope to see our loss in the scope of eternity. It will all make sense one day. There are a great many things we are not meant to understand this side of Heaven and by asking God to guide us we will make there to see our loved ones, to understand His great plan.’

To me this is the perfect way to end my blog for today...the day we celebrate our saviour's birthday.  God gave his son to us, He knew the ending but that didn't make it easier to know his son would suffer and die. But on this day of his birth we celebrate the gift of his life and of his death.  And today I celebrate the gift that Cole's birth and death have been.  It's a hard concept to grasp...that death could be a gift...but just keep reading and I'll explore where the gift of loss took me and how Jesus made it all ok.  

Saturday, December 24, 2016

Stories of Hope - Jodie's Story 17

And so with that the journey was over right?

WRONG!  The worst of it was over but now I had find my way back to normal.  The problem was that normal was gone or maybe I should say the old Jodie and normal for her was gone.  Finding my new normal would take months…well maybe years in all honesty…and would take some very painful moments and steps along the way. 

It’s said that there are five stages of grief, denial and isolation, anger, bargaining, depression and acceptance. I think I flitted from stage to stage in the beginning but then entered a mode of acceptance, for the time being, while I was in the hospital waiting for the boys to arrive.  Now that they were here I found my emotions ranged from disbelief to deep sadness. It was surreal feeling to have Cameron in the hospital and all of us at home. It's like I was never pregnant and nothing in our family had changed. It was almost as if none of the last 3 months has happened and yet I was filled with such sadness at times that it was all I could do to not burst into tears. I met so many other families in the NICU who were amazed by my strength and courage but I didn't feel like I was strong, rather that I had just done what I had to do. I didn't have a choice because if I had, it wouldn't have been to lose Cole and spend months in the hospital. How did that make me strong??? In those moments I seemed to be in the stage of grief marked by all kinds of questions and just didn't understand why this had to happen. I felt that in time, and with the support of my family and friends, those sad moments would not seem so overwhelming but I knew that they would never go away and I would never stop missing the baby I never got to know.

I have often said I never got angry, never hit the angry stage but I know, now, as I explore this and remember things that I was angry at times.  I remember beating my hands against my bed and sobbing into my pillow in the early days but I also remember asking, angrily, loud why I had to go through this. If I was only meant to have one of my twins home with me then why did I have to have a twin pregnancy in the first place...why did I need to experience this pain and loss???  I am not sure who I raged this against…the greater universe?  God?  I don’t know.  I just know it was a pretty dark time in my life. I spent a lot of time ignoring my life….letting things go in the house, spending hours thinking, reading things online, trying to find similar stories and similar minded friends.  My life around me, my family, my friends, my community, my home…none of this seemed to be as important was the people I met online who understood. 


When people would ask how I was I often said ok.  I never quite knew what to say because I really wasn’t good nor was I fine. I was missing a part of my family and didn’t know how to deal with that at times. I wasl lost, confused, angry, sad, grateful, joyful, faithful and hopeful. What a mixed bag of tricks I was.  I just couldn't get it into my head why this had happened. I rationalized sometimes that it was because I wasn't jumping for joy about having twins...not at the start anyway. But I wanted my babies, I wanted to make it work, I wanted to be that 'twin mommy'...the one people stopped in the store to admire their beautiful children who looked exactly alike. I got so mad at myself for the feelings I had when I read the TTTS success stories, it seemed so cruel of me not to feel joy that others don't have to go through this and I know it could be so much worse...I could have lost them both. But somehow that never brought me peace at this point in the journey. 

Sometimes I would look at the ultrasound pictures and the tears rolled down my cheeks. It hardly seemed fair that those two little boys would never play together, never snuggle up on my lap together for a story or two, never join their big brothers for a 4 man pile up on Daddy and never share a birthday cake together each year.

I often wondered how Cameron would feel about this.  Would he miss the brother he knew for 22 weeks, the one he grew with, kicked at, bumped into and comforted in his final moments....do unborn babies have that sense? I was comforted by thoughts that Cole's spirit would  always be with Cameron, guiding him and strengthening him.

But oh how I missed Cole and I struggled to find good things to think of.  I was overwhelmed, at times, with memories of that fateful day. I don’t think I was on that ultrasound bed for more than 2 minutes when the doctor told us that he was sorry, our baby had passed away. I remember saying no over and over again and feeling like all I wanted to do was curl up in a ball and cry. At the time it didn’t even seem to matter to me much that the doctor was telling us that Cameron was okay, all I could think about was that one of my children was dead and I was never going to get to hold him, kiss him or marvel at the miracle of his life. I was consumed with all the things we would miss out on. I wanted so much for Cole and Cameron. I wanted to see them grow up together, to do the things that twins do together. To watch them communicate without saying a word. I wanted to dress them the same in matching overalls and watch them play outside in the sandbox. It felt so unfair that I never got to do that. But it seemed even more unfair that Cameron would never get to know his twin either.

Sometimes I wanted to be angry at God but it never seemed to come to that. I think I was finally getting it that sometimes crappy things just happen, that it isn’t His will to have a baby angel in heaven, that it isn’t that this was His plan, but rather it just happened for no good reason. Now God was here to hold us all, to comfort us and to look after my little one up there in Heaven.

My peace at this time came from believing that Cole was with us all, especially Cameron.  I knew he would always be in my heart but most especially, that he would always be in Cameron’s heart and be a part of Cameron. For now, I felt, my heart was broken and battered. It would heal though, over time. It was like a puzzle and all of my children would always have a piece of that puzzle. It would only be a whole heart if Zackary, Brycen, Cameron and Cole’s parts were there…and so they are all there, forever with me for the rest of time. Each part will have different emotions attached to it at different times. Cole’s might always have the sad emotion but that was okay because without all four of those parts my heart would not be whole.

I knew I would get through this, I knew that because I’d made it this far and had been blessed by the love and strength of a God who never fails me and the support of so many people I didn’t know loved me so much. Although I appreciated it all, learning to trust God and to accept Jesus into my heart did not begin at all really until a few months after my survivor and angel were born... as I planned the service to say goodbye to our little boy. In preparation for what I would say a friend had suggested I read a book by a woman named Jenny Hander, likely the first person to really deeply influence my faith journey. Jenny had also been expecting identical twins when TTTS reared its ugly head and caused her twins to arrive before 27 weeks.  She was in a much different place in her faith journey but so much of what she wrote about resonated with me.  What really hit home for me then was her writing about needing to let one of her twins go, to accept her death and the survival of her twin sister as part of God’s plan. She was a woman of immense faith, a strong Christian and yet she struggled to say goodbye to her daughter, to stop praying for God to return her to be with her family. Her final acceptance came when she was finally able to find peace, comfort and hope in the loss of her daughter because she knew that , by following the teachings of Jesus, by being the strong Christian that she was, she would see her daughter in Heaven. This was God’s plan for her and it was ok... she would see her little girl again. And suddenly I became so very fearful that I would not see my son again, that I was not doing a good job and that my place in Heaven was, by no means, secure. 
That day I knelt down and I prayed and begged Jesus to forgive me for all my sins, most especially what my struggles to accept and grieve were doing to my family, to my children. I knew nothing about what it meant to come to Christ but I think that was the first day of the rest of my life so to speak.

After this I seemed able to look at this next part of our journey, saying goodbye publicly, with a greater sense of hope.  I won’t share all of what I shared at Cole’s Memorial Service but this was my ending….

At one point I had said I wanted to turn back time and change everything.  I’m not sure I still feel the same way.  Don’t get me wrong, I wish that I could go back and prevent Cole from losing his life to TTTS.  But would I change everything…….. not on your life.  This experience has given me such an insight into life.  I appreciate my family more, I love my family more.  I’ve met some amazing people on this journey that I likely wouldn’t have if I’d never been on this journey in the first place and who wouldn’t have been so important to me if we hadn’t have lost Cole.  I also wouldn’t have learned about the amazing family and friends we have, I wouldn’t have learned what true friends are.  I continue to be amazed by the love and support we’ve received since the very first day we learned of Cole and Cameron’s existence.  The phone calls and visits, the emails and messages, the food dropped off, the money and other gifts to help us with our expenses, the help with Zack and Brycen, the places to stay, food to eat, things to help me pass my time and the words…words of encouragement, support, love, understanding, compassion and hope. 

I told a very very special person a few weeks ago that I never knew how much it could hurt to be a mom but that I also never knew how wonderful it could feel to be a daughter, a sister, a friend, a neighbour.  This journey has shown me that and none of it would be a part of our lives if we changed everything.   And if we changed everything then Cameron might not be a part of our lives either…because without Cole there is no Cameron and without Cameron there is no Cole.

Friday, December 23, 2016

Stories of Hope - Jodie's Story 16

And on Feb. 26, 2009 my beautiful twin sons entered this world….
Every good and perfect gift comes from Above
We are blessed with twins to cherish and love
Born together to grow apart
One in our hands and one in our hearts.

With great joy and great sorrow
Jodie and Geoff Tummers
And our children Zackary and Brycen
Announce the arrival of our twins on February 26, 2009
Born into our hands                         Born into God’s Hands
Cameron Cole Gregory                    Cole Edward Ryan
4 lbs 1.5 oz                                         became an angel Dec. 13/08
16 inches                                            grew his wings Feb. 26, 2009
2:24 p.m.                                             2:25 p.m.
                                   
After a very uneventful c-section, our boys entered the world with Cameron protesting loudly...what a blessed sound to our ears. He was (and is) amazing. His apgars were the highest yet of any of our boys and he was the first of our children to REALLY scream at delivery. The screaming was such a great sign of good lung development and he surprised us all by not needing anything but free flow oxygen at birth. He was much smaller than we had thought but his breathing was so much better than anticipated.  Cole had arrived in a deep but revered silence.  The medical team all respected this part of our journey and simply said that baby B was here now. 

My wonderful midwife, Charlotte, was allowed to come to the delivery room with us and she carefully took
Cole and brought him to me wrapped in a blanket.  The doctors were still working on me and I could not handle looking at him in that moment.  I knew that I needed to be focused and more relaxed when I spent my first moments with the still son. 

My parents had come down to support us with the delivery and the arrival of both our boys.  After I was brought to recovery they were allowed to come in to see me.  Shortly after they arrived Cole was brought to us.  He’d been bathed and dressed in a gown that had been donated to us.  It matched a blanket that both our boys were also given.  It had been so important to me to have these items and they are tucked away in a memory box still today. 
Meeting Cole was very tough on us all. Geoff and I as well as my parents had a chance to hold him though only I had chosen to see him.   My medical team had all warned me about how he might look and none of what they said was positive.  Filled with these thoughts, I had carefully uncovered his body and stared at his tiny features, tiny hands and feet.  I won’t lie to you, looking at his battered body, so affected by the passing of time, was very hard on me but I knew it was an important step in closure for me.  Unfortunately the negative words of the doctors and nurses had resonated too much with my brain and I seemed unable to see Cole with my heart.  He didn’t look like a ‘real baby’ and it was so difficult for me to see him and difficult for memories from seeing him to be positive for many, many months.  Seeing his battered body broke my heart all over again and I sobbed and sobbed.  After holding him for a while it was time for me to leave recovery and I gently passed my son to the nurse, reluctant and unsure. She reassured me that I could see him again later and that they would keep him in the ‘warm room’ until we were ready. 

Next I was wheeled on a stretcher into the NICU to meet my tiny and feisty son.  It suddenly struck me how odd it was that I had said hello to my stillborn son before I really even met his twin brother and that my twin sons were now separated forever with the only photos of them together being ultrasound shots.  This brought me such a feeling of sadness but meeting Cameron turned that sadness into joy.  He was so full of life and doing so much better than expected.  It was so amazing to reach my hand into his isolette and touch his body, feel how real and how alive he was. 

Later that night we had our final moments with Cole.  Geoff and I both held him and said our hellos and our goodbyes.  We shared our dreams for his life with him that we wished so much that could have been fulfilled…to see him play with his brothers, to walk hand and hand with his twin, to wear matching clothes and pay tricks on others about which twin was which, to go to school, to play hockey, to ride on the tractor with Grandpa and oh so much more.  And then we cried as we each told him how so very much he was and always will be loved.


Thursday, December 22, 2016

Stories of Hope - Melissa's Story

My dear friend Melissa is another TTTS momma who has a beautiful survivor here on earth and a heavenly child waiting for her.  We met on facebook and she's sent me such amazing messages of encouragement and hope over the years.  Her faith is amazing as is her friendship.  She wrote this for my blog project....


One day I was dancing around with my son Micah. Micah is severely handicapped and an identical twin to Spencer who passed away 8 days after they were born due to prematurity and other complications due to TTTS. We were laughing and giggling and having so much fun. And then the thought came “I will never dance with him at his wedding” and suddenly I was sobbing, and I was picturing Spencer in heaven falling in love with a special sweet angel before Micah joined him there and feeling sad that they wouldn’t even get to experience that together, and then I was sad about all of the double dating and dances and all of the “might have beens” that I hadn’t thought of and grieved yet, and ya, sobbing. Grieving a child is like that, you don’t just grieve because you lost your child, you also have to grieve all of the dreams and “might have beens” that will never happen (at least in this life). Sometimes, around anniversaries of when things happened, you expect grief, you almost welcome it. Other times it sneaks up on you and whacks you upside the head. Hard. And while yes, grief is hard, really hard, grief is important because it signifies we have loved. If we didn’t love, we wouldn’t grieve. There is no shame in grief. I have learned something important since the birth of my twins. I have learned that grief and peace can co-exist. Despair and peace cannot, because despair indicates a lack of hope, but grief and peace can, because hope can be present, can sit beside and hold the hand of grief.

These are some of the things I have hope for. I have hope that one day I will have the opportunity to raise my Spencer in a perfect world. I have hope that Micah will one day have a perfect body and mind and he will have voice to what is inside of him.  I have hope that while dancing at their weddings won’t happen, my twins will have the opportunity to fall in love and choose a companion to spend eternity with. I have hope that after the resurrection my boys will have perfect bodies to match their tremendous spirits. I have hope that one day my family will be whole and complete and together, never to be parted again. I can hope for those things, because I believe the promises God has made to his children. He has provided a Savior for us who -because he was willing to drink the bitter cup and not shrink -made it possible for us to repent and return to heaven with God the Father. Because he was resurrected, he broke the bands of death, so while our bodies and spirits are separated for a time, after the Second Coming they will be joined again eternally.

Hope and peace are a result of faith in Jesus Christ. I have come to believe that faith is strengthened, and hence hope and peace are strengthened, when we choose to trust God. Proverbs 3:5-6 says “Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge him and he shall direct thy paths”. As i have chosen to trust God, even when I don’t understand, my peace has increased. I can turn over all of the “why’s, why this, why now, why me, why didn’t, why not” to him, and just trust that he is in control and “all will be made right through the atonement of Christ”. When I choose to trust, I find peace in knowing that my eternal well being and happiness are of paramount importance to Heavenly Father, and so is that of my children- that their eternal happiness and well being is just as important to him, and I can trust them to him.

Four days after my twins were born I had just returned to my hospital room to pump when the nurse called me down “Spencer is not doing well, you need to come back”. HIs Dad was 2 hours away working and so I stood by his bedside, my finger resting on him through the incubator window praying ““Dear God, I need a miracle, please help him to hold on until his Dad gets here, please, help him recover, I’m not ready to say good-bye yet, please, please, I need a miracle. Please God, not yet. Not yet.” That prayer was answered with a yes, and Spencer stabilized. That same day, only a few hours later the doctors sat down with us for a care conference for each of or boys. They ran through the list of every single thing going wrong for our boys and when I said “so you’re saying they will probably be disabled” they said, “no, we think that they are so sick that they are not going to make it and you need to seriously consider letting them go. Both of them. “ We had fought so long for our boys, we couldn’t just “let them go”, but also realized that perhaps God’s plan was not our plan, so our prayer became “Dear Father in Heaven, we love our boys, and do not want to let them go, but if you need them, that is okay too. So, if it is alright with Thee, we are going to hang on to our boys as long as they stay the same, or get better. If they worsen then we will know they are being called home, and we will let them go.” The following Tuesday the hospital called- Spencer’s bowel had perforated (gotten a hole in it)- he was dying. On the long (45 min) drive to the hospital I looked out the window and prayed again. “God, I know he can be healed, I know thou hast the power to bind up the holes. I know miracles are possible. But if not, if he is being called home, then I give him to Thee, Father in heaven. I am giving him to you. Please take care of him for me.”

I listened to a sermon by David A. Bednar who tells of counseling with a couple who was facing a cancer diagnosis. He tells of opening his mouth and the words “you have the faith to be healed. Do you have the faith to not be healed?” coming out. He then went on to talk about Shadrach, Meshach and Abednego when facing King Nebuchadnezzar and the fiery furnace. They said “If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king.
 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.” Elder David A. Bednar then went on to talk about how we need to develop the faith to be able to say “but if not we will still remain faithful”. The faith to accept that when the answer is no, it doesn’t mean God has stopped loving us, or that we have done something wrong. It simply means that God’s eternal perspective, his omniscience and omnipotence recognize that no is the better eternal answer- even if we don’t understand it here and now.
I look back and wonder sometimes how we were able to do that. How we were able to have the faith to say “but if not”, and then go forward with faith when that was indeed our answer. As I’ve thought about that as I’ve made numerous attempts at writing this blog post this past week and more, Two things stick out to me. The first is because we (my husband and I) had been taught ever since we were little that part of our purpose for being here on earth was to be tested- to go through trials so we could show our faith by turning to God rather than away from him- that life is meant to have opposites; joy and pain, sickness and health, good and evil, and we have to experience both sides in order to comprehend both sides, and the core of our beliefs- that families are eternal, that we all be together again as a family throughout eternity. The second, and I think maybe the strongest reason, is that we both were confident in God’s love for us. We knew of his love for all mankind through the sending of his Son, Jesus Christ to redeem all of God’s children and be resurrected. But we also knew of His love for us as individuals. I knew through previous answered prayers, through the love from others exhibited towards me, through the testifying to my heart through the Holy Ghost when I sought to know if he was real, and specifically if he loved me. I knew he loved me because of the times he used me to answer someone else’s prayer.I knew he loved me because of the peace and comfort I received after a miscarriage right before I got pregnant with my twins. Because we had learned to recognize and feel His love for us, making the choice to trust him, to have faith in him, was not hard.

We also had faith that while the answer might be no, he would not abandon us, but would sustain us, carry us, walk with us, comfort us. We would not be alone. Isaiah 53:3-4 says “He is despised and rejected of men; a man of sorrows, and acquainted with grief: ... Surely he hath borne our griefs, and carried our sorrows: …” While before the loss of Spencer I believed this, now I know this to be true, he knows my pain and with perfect empathy has been with me each step of my journey. Matthew 11:28-29 Come unto me, all ye that labour and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
And John 14:27  Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

I have felt his rest, I have felt his peace, I know it is real. For if it wasn’t- I would not be me. I would not walk daily with a smile on my face, joy in my heart, and a desire to serve and lift others. If his peace was not real, I would not have continued adding children to my family (we now have 8 boys). I can’t even begin to think how very dark and fearful and despairing my life would be without the gift of His peace.

This January will be the 10 year mark of the beginning of our TTTS story. While I would never wish to lose my son and the dreams of what having twins would mean, I am grateful that God has helped me use that (ongoing) experience to draw closer to Him, and (hopefully) become more like Him. His love is real. He is real.

~Melissa