Thursday, December 31, 2009

I"ve been searching for blogs of other TTTS families...actually found a few that I really want to watch and they are listed at the bottom of my other blog as I am on there more than here... usually anyway. There is a link to my other blog on here (I think) as well.
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 his 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, by suffering as Jesus did, 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. Some day 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 everyday. 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 and he wasn't even on the growth charts for his age....weighing a mere 650 grams....and likely would have had some major delays and 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.

I could promise to live a healthier life but what fun would that be!!! Actually I will do my best at that too!!!

So Happy New Year to you all! Farewell 2009, you have taught me so much!

Tuesday, December 29, 2009

A Holiday Wish

My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

Rascal Flatts

This is a song that is on my other blog...the place a post all my pics of my boys and our family...a place of joy. This song has been stuck in my head for days and I thought it was because I had wishes for Cole that just didn't happen but then I sat and really listened (okay admittedly I looked up the words online) and realized that maybe, just maybe, this was Cole speaking to me. I am sure that he wishes this for his mommy just as his mommy wishes this for his brothers. I'd say I wish it for him too...and I do...but I'm just not sure that I feel like he got the better end of the deal yet. I know I need to feel that way...that I need to understand and appreciate that where Cole is, in Heaven, is so much better than being here with us. But I'm not sure I can feel that way all the time... I just miss him and wish he was here too much. The last few days have been filled with wishful moments. I wanted to have two babies on my knee while we opened presents, I wanted to open a present from my son and hug him to thank him for it instead of tearing up and wishing I could.
This is the present the Cole (with daddy's help) gave me....so very fitting.




And this is the message I had for Cole for this our first Christmas without him
Merry Christmas my sweet son, this first one without you is so hard. I miss you so very much. The ornament that Daddy helped you to give to me is so very perfect. I will always have your heart and you will always have mine. Enjoy this special day in Heaven...it is a season of Miracles and your twin brother Cameron shows me each and every day just what a miracle is!

I was so inspired to make things better before Christmas and though I still want to I am having a hard time today with this. I don't see why people think they have the right to tell me, even carefully, that they think I should move on, not be so public with my grief, not let my grief affect my other kids or really even accept that others don't know what to say. I know that I am doing the best I can and I am getting better. Tough days, seasons and times will happen. I have to embrace them. Someone, pretty sure it was another one of my wonderful cousins (thanks Deb) said many months ago that the moments that catch me up, the twin moments especially, the really hard moments....those are the times when Cole is showing himself to me most, when he is saying hello and telling me he misses me too.
So I've decided I have to embrace these crappy times and not push myself to be someone or somewhere that I am not. I'll make it through this, I know I will. I will find the focus I need to move within this grief and use the energy I have for it to be positive and pro-active. I have the plan in mind, I have the idea and the focus...I just need to keep working to ensure I find the right fit for my energy.
Thanks for reading, thanks for supporting me, thanks for being my friend!

Tuesday, December 22, 2009

Time for a change

Today I awoke in awe of the beautiful day outside...the snow on the trees and houses lightens my heart and inspires me to make this a wonderful next few days. I can't change what happened or how people treat me, I can only change myself and the way I treat the world.
I thought of Cole first thing when I saw the snow and know it was a message from him and HIM...God knows I need to see the world brighter, clearer and filled with the good He gave us. I have been very down for days and after a message on facebook yesterday that I posted about asking others to remember that I am not the person I used to be nor will I ever be again I received a message from my cousin Roxanne.
She reminded me that although I am sad and lost right now I have 3 boys who aren't...they need me here and they don't really get that sadness takes over. She lost her sister when she was around 15 and she spoke to me about what loss of sibling can do to you and your family. It made me realize that I need to be here for the whole family, not just for Cole.
And from that I realized that a lot of times I am being just plain selfish. I post sad things on facebook because I don't want anyone to forget Cole or the journey we've taken. I don't want others to forget because I know I never will so why should they. But that is selfish as is the attention I get because of my public grief. God didn't put me in this situation to see how much attention I can get. Remembering my son through sadness and attention isn't right, healthy or the way He intended it to be. Remembering him by honoring him, by raising awareness of TTTS and identical twin pregnancy issues, by raising funds for Mt. Sinai and research and support...those are all ways I can remember and praise Cole for being my wonderful son.
I am going to try very hard not to post things that are hard to read, evoke pity or sadness. It is time to show the world the wonderful things Cole brought to our lives and to put the energy I put into grieving into something more positive.
I want this, I need this....and I promise I WILL do this!!!

Monday, December 14, 2009

An Angel Remembered

The day was okay after all...lots of tears but a feeling again of some closure...kind of like I needed to relive the whole experience before I could move ahead. And so I created this video of photos, information and memories for everyone to see...and maybe, hopefully people can somewhat understand how hard this is... to live without your child but to see them everyday, to worry about how your little survivor will cope when he learns about the sacrifices of his identical twin and to wonder just what it must be like for him to be missing his twin, his brother, his friend.

video

Sunday, December 13, 2009

The worst day of my life


I hardly slept last night...I can't waking up thinking that I should be feeling horrible, that I should be thinking of nothing else but the horrible news we learned one year ago today but instead everything was just jumbled up crazy dreams. And so I thought maybe this isn't going to be so bad after all....maybe it'll be just another day.
And then I woke up and reality set in and I've been fighting to be my composure ever since.
How can one little boy who I never even truly met affect me so deeply...because he's my son, my flesh and blood, identical in looks to the little miracle that blesses me each with his laughs, smiles, hugs and kisses. I wanted a life with him so bad and I wanted to be his mommy. I thought I was doing so much better in this grief journey but the last few weeks have proven to me that no matter how far I get there will always be things that will send me spiraling backwards. Right now my heart feels ripped apart, my arms ache to feel Cole in them and my desire to turn back time is so very intense. I WANT MY BABY BACK!!!!
I am pretty certain this day is a write off...unfortunately I can't just curl up in my bed and spend the day feeling sorry for myself. And yes I know I should say fortunately...but right now I just want to do that. Instead I will be busy with my family and out at church for our Christmas concert. Hopefully that will help with this horrible day. Later this afternoon we will be preparing sky lanterns for a balloon launch for Cole. We will draw on beautiful paper lanterns, create messages of love and wishes for Cole. When it is dark we will travel out to his garden (if we can find it in the snow) and light the lanterns and watch them rise to Heaven.
Right now I am finding it very hard to write, to talk about how I feel so I think I will attach the next segment of the story that I've written...the account of Dec. 13, 2008. I may come back later and write some more and I know that tonight or tomorrow I will post the tribute video I've made for my little angel.
Thanks for reading this, for being my friend...for supporting me in my worst moments!

The next morning I awoke early and felt strong kicking, especially on Cole’s side of my uterus. I was so confident that this meant good news and I emailed or called everyone to tell them how things had gone the day before.
At 11:00 we arrived at the children’s hospital next door and the fetal echo began. The doctor doing the scan asked which side the recipient baby was on and then sucked in his breath sharply. Without looking up at us or stopping he said “This baby has no heartbeat. Your baby has died. I’m sorry, your baby passed away”. And the world crashed around us. All I wanted to do was curl up and cry, all I wanted was to be left alone with Geoff to cry and hold each other. Instead this doctor was all business and after a minute or two he said “I’m very sorry Mrs. Tummers, this should have been checked before you left Mt. Sinai but I still need to scan the other baby... please you need to calm down so I can scan you.”
The doctor told us that all seemed fine with the other baby. We asked him what this meant for the other survivor and he said everything should be fine but Dr. Ryan will confirm that. But what about the other baby…what will happen now was my question. And the most devastating (and incorrect answer) was given to me…your body will just absorb him.
And I sobbed and sobbed. Not only was I not going to get to have my twins together, not only was I now the mother of an angel baby, but I was never going to meet my angel, it would be like my baby never existed. He was wrong, this was explained to me later that day but at the time it was the most devastating thing.
We were quietly left alone in this area of the heart clinic while the doctor went to call for a porter for me and to let the floor nurses know what had happened. We held each other and sobbed. Geoff was having a very tough time remaining still. He kept leaving me and going to make calls to let our family and close friends know.
Later, after we returned to Mt. Sinai my parents called to say they were on their way…which of course evoked another round of sobbing. I just couldn’t believe this was all happening. By the time they arrived we learned we had another crisis on our hands….
Dr. Ryan had come in after the staff called to tell him what had happened. He scanned me again and confirmed that Cole’s heart had been very very sick and he’d gone into heart failure. His abdomen was even more full of fluid now, in death, then it had been the night before. His concern now was Cameron as his MCA (medial cranial artery) readings were showing that he was now anemic. Dr. Ryan was very confident that all vessels had been cauterized and this change in his health was due to a final rush of fluid from him to Cole as the last vessels were sealed off. Much scanning and rescanning was done, the question seemed to be was the MCA high enough to warrant a blood transfusion…another risky procedure. However this wasn’t all they were looking at…one doctor who scanned me told us, devastatingly, that they needed to make sure that this blood transfusion wasn’t just saving a very sick baby. Eventually it was determined that it needed to be done, very soon, and was scheduled for as soon as the blood was available.
My parents arrived and we were all so very emotional. My parents had been so very overjoyed about us having twins. My mom had shopped her heart out just weeks before buying two of everything (well actually 3 since my brother and his wife were also expecting). My dad is a fairly emotional guy when it comes to us kids, especially his only daughter. It was a very tough afternoon and evening waiting for the blood to be ready.
My dad stayed with me for the procedure which was very touching and very comforting. The room was filled with staff…. 3 doctors, 2 nurses assisting Dr. Ryan, a nurse helping with the blood transfusion and a lab technician. The procedure was a bit uncomfortable as they use a needle similar to an amnio needle and they put it in at 2 or 3 different places. They remove a sample of blood and check the hemoglobin levels right there in the procedure room. Cameron was given 40 cc’s of blood and after cleaning me up I was wheeled back to my room…to wait and hope and pray that my surviving twin would indeed survive, that there was no damage to his brain.
The next day they checked his MCA and thankfully it was already coming down. They checked my cervix…thankfully still closed and long…and sent me home with follow up and MRI’s scheduled for later that week. That drive home was one of the strangest that I think that I will ever have, it seemed to take forever and yet was like we had never left Monkton. As we drove into town we both cried as we realized how completely and forever different our lives were from when we left for work only 3 days before.

Saturday, December 12, 2009

Saving their lives....one year later

Today I woke up remembering how I woke up a year ago fearful but so very optimistic. I laid there thinking about what was happening to my babies and wondered how our boys (I was so happy to finally know they were boys)we handling things in there. I imagined matching boy 'stuff'...toys, clothes, hockey equipment. I couldn't sleep so I got up and found a computer and wrote emails and online messages to let everyone know what was going on. Never did I imagine how quickly things were changing.
Cameron, is, of course, the reason I was up at 7:00 am today and today he seemed hard to comfort. He wasn't upset but seemed agitated...I wonder if it bothers him as much as it bothers me that this was the last 24 hours or so that he and his twin brother were alive together inside of me one year ago. I looked at him, held him close and realized we saved him a year ago today...that we came within hours of NOT saving him. Cole's body was giving out...the rapid progression of the TTTS proved that. How could I not be grateful to Cole for holding on for enough time for the surgery that connected him to Cameron to happen so that when he died he didn't take Cameron with him.
And yet how can I not wish that we'd known just a few days sooner so that the progression wouldn't have been so great? How can I not wish that TTTS had never happened? How can I not wish my sweet baby Cole was still here????
Below is another excerpt from the story I am writing though I'm not sure anyone is really reading these things. It's an account of what happened one year ago today....

On the morning of December 12 Dr. Ryan, met with us and scanned me at length again. He was a very reassuring person but seemed to be all business. We felt at ease with him but knew from his demeanor that this was a very serious situation. He explained TTTS to us again and discussed our odds. He said there had already been some changes in our recipient, Cole’s, heart and the fluid pockets had increased 2 cm’s in the 9 hours since I was last scanned. We wanted to do whatever we could to save the boys so the surgery was confirmed and booked. They began discussing the best place to enter the uterus and this seemed to take a long time. I had an anterior placenta and what I now know a velamentous cord insertion on our recipient though none of those terms were given to us. We did hear terms like acute TTTS but had no idea what that meant. I have since learned that having a velamentous cord insertion usually means poor growth in twins, often because they also have a poor share of the placenta. It is very rare to have both the cord problem and unequal share with the recipient baby…Cole…and a share of less than 25% does not often mean that baby will survive. Basically they just outgrow the placenta they have and do not have enough nutrients to survive. An anterior placenta is very difficult to do surgery on and some specialists won’t do the surgery if you have one. But as I said, I knew none of this at the time, only that I HAD to have surgery as soon as possible to save even just one of my babies. And so we sat in my room and waited for hours for the operating room to be ready and prayed and planned for these little boys growing inside of me.
The surgery happened at 5:00 that afternoon. I did not respond well to what was going on and had problems with anxiety attacks throughout as I drifted in and out. I think I was just so overtired that my body was rebelling. Dr. Ryan came to speak to us after the surgery and told us that he was very confident that he had gotten all of the affected vessels and that there were quite a number of them. The most serious ones were located right at the area where the membrane attached to the placenta and a septostomy had to be created in order to get to them. This, in essence, meant that our boys were now mono mono twins and their cords could entangle at any point. He told us this would mean frequent ultrasounds and likely hospitalization after 28 weeks. When this hole had been created, my husband later shared with me, our donor baby reached through it towards his very sick twin…like he was reaching out and reassuring him. Dr. Ryan went on to tell us that when the checked the boys at the start of the surgery that the fluid pockets had increased again and that Cole’s abdomen was completely full of fluid (known as hydrops) which now meant our TTTS was at Stage 4. He said his heart was also much sicker than before and because of this he would be sending me for a fetal echo cardiogram the following mornin
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Friday, December 11, 2009

One year ago....

Today marks the day that this journey began...one year ago. It is the day our boys were diagnosed with Twin to Twin Transfusion Syndrome. And it is an awful and sad time for me right now. I can't believe that one year ago I left my house to go to work, left work to go to an appointment and had no idea what crisis was happening inside of my body...and had no idea that when I returned to my home again I would be forever changed.
The tears are so present these days, the moods so intense, the feelings of sadness and wishful thinking so strong. I have been writing a lot lately though not posting much. I will be posting a few things in the next few days. I'm helping a TTTS mom write a book and will be attaching segments over the next few days. I hope you will read them and perhaps understand a bit of what our life was and is like.
For any of our family and friends who read this blog, the people who will see me over the next few days please understand the I want and NEED to talk about my boys, especially Cole. Please understand that I am going to cry and I may not be the most fun to be around but I need you to be around me, I need you to hug me or call me and help me get through this.
I miss my son so very much!!!

On Dec..11th I saw my OB, Dr. Hancock again. He asked all the usual questions and scanned me. He made jokes about how beautiful my babes looked and tried to find the sex out for us…no luck. He did ask when my next scan was and seemed happy that it was that day. I just recalled as I was typing this that he also asked me when the next scan after that was at that time and when I told him he said it was important that I have them often. His words were something like ‘well all looks well to me but it’s good that I can defer to the experts….I’ll let you know if they tell me anything. ‘Foreshadowing for sure.
I arrived for my scan only to find out that a miscommunication had occurred and they had cancelled my one on this day. I was pretty mad as I had taken the afternoon off work and only had so much time I could use for all these many appointments. So after basically telling them I wasn’t going home and that my doctor did not want me to wait until my next scheduled scan (in early January) I was told to go have lunch and come back in an hour while they checked to see when they could fit me in and when my doctor needed the scan done. Geoff was unable to stay with me though because the appointment was now an hour later and he needed to get back to work.
During the scan the tech and I discussed how hard it had been for them to find the membrane dividing the babies. She spent about 20 minutes scanning me and then said that she was done what she needed to do but was having difficulty with that membrane again and was going to have someone else come in to take a look. Another tech came in a few minutes later and began scanning again. He left after about 10 minutes of scanning to check the results on his computer. After about 5 minutes he was back with a Dr. this time. They scanned me again and spent some time discussing different measurements they seemed to need. The words didn’t seem to co-ordinate with the membrane issue and at this point I began to worry. When he left again to check out the scans and didn’t come back for 20 minutes I knew something was wrong.
And when Dr. Hancock arrived to talk to me, I knew something was very wrong and asked him what it was. He told me that there was a concern with the growth of the babies and the sharing of nutrients. He explained that it appeared that one baby appeared to be getting too much while the other was getting none. I was to go to see high risk specialists the next day in London and he would be calling me by 4:30 with more info. They had me wait for a disk of ultrasound results to take with me and sent me on my way after taking my cell number.
I left the hospital in shock, trying hard not to cry. It just seemed too unbelievable that these little babes might be in trouble. I called Geoff and bawled but managed to get somewhat calm and agreed to meet him at our son’s school for our meeting with his teacher. I called my mom and cried on her answering machine and then tried my best to keep it together and drive back to home. I was so scared.
I made it 5 minutes outside of the city when my phone rang and it was the doctor. He said I needed to remain calm but that I needed to return to the hospital immediately as I was being sent to Toronto right away. He said to have Geoff come too and to meet him on the delivery floor.
And then I really wept. I could hardly talk when I called Geoff and our babysitter. It all seemed so unreal.
But reality didn’t really hit until I got to the hospital and spoke to Dr. Hancock. He explained that the doctors he’d spoken to in London told him to contact Mt. Sinai in Toronto and that specialist said, after hearing the results of the ultrasound that it was imperative that we come to Toronto right away. Dr. Hancock said that I would likely have surgery and be in Toronto for a week or so. And then he really scared me when he told me they would be giving me a shot of celesdone, a steroid given to strengthen premature babies lungs…they were afraid these babies were going to be born right away.
I cried and shook, my heart was breaking and my mind was racing with thoughts of these babies and the life I wanted for them. How could this be happening to me, to them, to our family???
Geoff arrived a bit later and met me at the door of the hospital. He just held me as I cried and tried his best to alleviate my fears. The next few hours were spent trying to reach those who needed to know while driving to Toronto.
We met with Dr. Wendy Whittle when we arrived at Mt. Sinai. She was amazing, very calming and assuring. She scanned me again and showed us the signs of this disease we now knew as Twin to Twin Transfusion Syndrome. She also was finally able to tell us that we were expecting 2 little boys.
Our babies were the same size, actually our recipient was about 15% smaller. Our donor baby had no amniotic fluid and no urine but other than that he looked very good.
Our recipient baby, however, appeared to be more affected. He had a full bladder, lots of amniotic fluid and his heart appeared to be somewhat affected, perhaps working harder than normal. The TTTS stages were explained to us and our babies were at Stage 3 with 8cm pockets and reverse flow for our recipient and no amniotic fluid or visible bladder but no other affects to our donor. Dr. Whittle seemed very confident that surgery would correct our problems and that our babies would be fine. She discussed our options and the outcomes of each. If we did nothing then there was a 100% chance we would lose one or both babies. We could try an amniotic reduction but this was not really an option at the stage of this disease that we were at. Or we could have the laser surgery preformed at Mt. Sinai, the only place where it was done in Canada. It did come with risks, one being pre-term labour and if that happened we would lose both babies as they were too small to be viable.
We left the scan feeling scared but confident that they would save our babies and correct the problem. The hospital brought a cot in for Geoff and gave us a private room. We sat together and cried and prayed…and talked. We were so scared but both of us tried to be strong. We talked about names for our boys and decided on Cameron and Cole. Geoff suggested that atleast one of the boys should be named after this man who was about to perform life saving surgery for them, the head of fetal medicine, Dr. Greg Ryan.
We fell asleep, or tried to, holding hands, both lost in a dream world of worry and stress.

Monday, December 7, 2009

World TTTS Awareness Day

World TTTS Awareness Day





http://www.worldtttsawarenessday.org/media/images/homepage_globe.jpg

"WORLD TTTS AWARENESS DAY is an international mobilization effort created by The Twin to Twin Transfusion Syndrome Foundation to increase awareness of the #1 problem facing multiples. It is crucial for women to get an ultrasound in the first trimester to identify multiples and then to determine whether there is one placenta or two. Women must learn the warning signs of TTTS, the 15 questions to ask at each ultrasound, and the available treatment options. World TTTS Awareness Day is about empowering parents and is filled with messages of Hope, Help and Encouragement. Your babies can make it and be healthy. Don't ever give up. Please, Get Educated, Get Ultrasounds, Ask Questions, Get Treatment and Get Involved! This day is also a remembrance day for all the babies who have had TTTS. Candles will be lit tonight across the world during the vigil and messages may also be left for your babies through lighting online candles."

We lit our candles and sat quietly and thought about where this journey has taken us. Awareness is the key. As I told our exchange student today, we knew TTTS existed but had no idea how serious it was or how devastating. We had no idea that identical twins had so many serious life altering issues that can occur...we had no idea that we could be a ticking time bomb. Our doctor did see me often enough, I did have my scans early enough and frequently enough but that was only because of scheduling mix ups and necessity for repeats due to the size of the boys. All identical twins should see a high risk specialist if one is available...there were tons available to us in London. But NONE of this would have saved our sweet Cole, nothing different would likely have happened except a lot of added early stress. God does work in wonderful ways!
Missing you so much today my TTTS angel baby...and loving you so much too. Amazed by you my TTTS survivor and loving you till I feel like I could burst. I love you both so much!!!

Tuesday, December 1, 2009

Kleenex and Candle Friends

"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
Devotion #21 - Who Do You Say I am?
I have become so lax in my blogging. I am not sure if that means I don't 'need' this blog as much or if I am just so messed up lately that I can't bring myself to write here....I am thinking the later though the first one seems a healthier reason!
I feel like I am so up and down lately. On Sunday I wanted to write because I was so down and had so many thoughts going through my head....but I ran out of time in the day and now the feelings are as intense...but here is what lead to them.
It began with the feeling of loneliness after a fairly unsuccessful holiday/birthday party that we had on the weekend. I felt like I just had no friends and that no one really cares. It's funny when I look 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 guess I no longer attract the attention and pity of others. It is a very lonely feeling. It makes me realize even more so that people just don't get it... they don't understand that although we lost Cole almost a year ago (I can't believe I have to deal with that too) and the stress and strain of all that was the remainder of the pregnancy ended last February with the arrival of our boys...it doesn't end for me there. It will NEVER end for me, Cole will forever be a part of my life and a part of my heart. I can't MOVE on, I don't want to MOVE on...I want to cope, to learn to live without him but it's not moving on...just coping along.
I was also (well am also) reading an Amish Christian fiction book that had a strong focus in the section I was reading on Sunday about God's will and learning to accept that things are God's will.
I think I have accepted that becoming pregnant with twins was God's will. I have accepted that our twins getting the rare and fatal disease TTTS was God's will. I have accepted that losing Cole and keeping Cameron was God's will. I am finding it hard to accept that losing the ability to connect with those that I considered friends is God's will. And guess what...I am pretty sure it's not. I am pretty certain that God brought this situation to our lives and to our friends lives to bring us the opportunity to build stronger relationships and those that aren't up for the challenge...well I am not going to go there.
But although it was God's will to take Cole it seems to be the frame of mind of so many to think that only that it was God's will to make Cameron safe, to focus on the positives that came out of our journey. Why can't they see that there are negatives too that are God's will too? I can see that, I can accept that and I am the one who probably hurts the most because of it. I know that God doesn't only give us what we want, doesn't only give us an easy life. If he did than how would be build strength and character, how would be understand the trials that Jesus endured for us? Why is that people can't talk about the sadness, the despair and the loss with me? Why does 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".
The devotion today is about preparing yourself for the situations that you may face regarding your loss. "How many children do you have?" or often for me "How many boys do you have?". How we answer that depends on our moods but most days I am pretty brutally honest. I don't really care how uncomfortable it makes people...I want to honour my son and I want to include him everywhere in my life. I want everyone to know how awesome it is to be the mom of twins and how special Cameron is to be a twin. And if I don't answer them honestly then I can be sure my kids will do it for me...and then everyone is left feeling uncomfortable.
My loss has changed me forever. I no longer feel confident in what I think is my journey of life. I don't know where I am going or even where I've come from at times. I don't know who my friends are anymore...well that's not true. I know, for certain, who the true friends are. I know that they are the ones who talk to me about Cole and let me vent without reminding me how lucky I am that Cameron is still alive. But I don't know if I should give up on those that can't seem to support me, I don't know how to support them either.
What I do know is that I appreciate life so much more now. I know that God has given me 4 perfect gifts, little miracles to love. I know that I am meant to do big things...just not sure what they are. I feel very compelled to do something for others who suffer like we have, others affected by TTTS, others sent to Toronto to Dr. Ryan and even to other TTTS specialists in the world. I know that God has given me the gift of the gab (as my family says) for a reason...I am blessed with the ability to write well and I want to use this gift.
I don't if I am ready to share my love for God and the insights I have about our journey with everyone. Not because I am afraid to be a 'public Christian' but rather because I am not sure what I feel and what I want to do with it. I do 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.

And as I gear up for the next 13 days...days where tears will come so easily as I remember all that happened last year at this time, days where I don't want to go anywhere and when I can't hold Cameron tight enough, or days when seeing Cameron just makes me sob and sob....I know that I will get through this because I am a child of God and He will see me through this. His love will surround and protect me. His love will NOT stop it from hurting, it will NOT make it go away, it will NOT erase what happened. But it WILL make it easier and He WILL provide me with people in my life to help me get through it. This much I am sure!

Monday, November 9, 2009

Sudden Moments and Devotion #20...the Gift of Forgivness

I am having a craptastic day today and thought I'd vent here.
Today after Cameron's nap I was snuggling in the chair with him when he looked up and grinned this huge grin, laughed and put his hands against my face and squeezed. Suddenly I was hit with this moment of intense sadness and it just won't go away. I have never been able to picture my life with two babies, never been able to imagine what it would have been like to actually meet Cole before his heart stopped beating. And suddenly there I was with this overwhelming feeling of love for Cameron and I could imagine feeling that for both of them, imagine both of them on my lap smiling and hugging me. I am crying so hard right now and it's been so long since this intense feeling of grief has hit me. Part of my problem right now is that I have gone back to the 'what if's' again. I did such a good job of researching TTTS and SIUGR and got all my reports so I could understand what happened. I KNOW that the chances of Cole surviving with all that was stacked against him weren't good. I KNOW that the laser surgery is what SAVED Cameron. But suddenly I wonder (okay not suddenly but after reading another mom's posting on a facebook group about her baby having 10% share and surgery not being an option they were willing to take as it meant certain death for that twin) What if we didn't do the surgery? What if we just did amnioreductions to get us through a few more weeks till they were strong enough to be born. We only needed 100-150 more grams for them to be viable. That's likely a week, two at tops. What if we'd done that??? Damn it, why does it have to hurt so much???

I have been putting off blogging the devotions for awhile...part of it is that I don't feel as connected to the book as I once did...I think I am just not the 'right type of Christian' for this book. It seems to be for people who are so more devote than I am, so much more willing to accept Jesus as their saviour and devote their lives to him than I have been. I feel a bit like a failure and poor Christian when I read the devotions and wonder if I'll ever get to where I need to be.
The other reason is pretty clear when you read what I wrote above...I am just not ready to move on to some of the places I need to get to yet. Somedays are just so very hard, today is one of the worst ones I have had in a long time. I miss Cole so very much and want so very much for this life to be different.
But this devotion does ring true for me in part. It asks if you feel you need to ask forgiveness from your child that you lost....and I really feel like I do. I need Cole to forgive me for not asking the right questions, doing the right research, getting the right doctors and most of all for not being filled to the brim with outward joy at the news I was carrying twins. I need him to give me that gift. I am pretty sure he can do that, because he knows why he left before we got to meet him, he knows what God's plan is.
As for the gift from God of eternal life and his forgiveness by believing in Jesus? Well, I know I believe, I know love God and all that he's given me. I know that I am being all the Christian I can be right now and I'm pretty sure it's the gift God wants me to have right now...and that when it's time for that gift to be bigger, to fill my life fuller and for me to understand more and more what God has in store for me, He will make it clearer.
Until then I need to grieve and cry, to love and laugh and to cherish each and every moment I have with all of my children...even the moments of sadness that are Cole's moments when he shows me loves me.

Sunday, October 25, 2009

Moving ahead...not yet

I don't think I am able to move ahead in this devotional business yet. Lately I seem to be overwhelmed with tears. My friend Julie just celebrated her 2nd angelversary and it made me remember the days surrounding the diagnosis and loss of Cole. I just can't believe how much it hurts when I think of him and all that our family has lost. I think of all the plans I had and I think of all the times I watched my two babes on the ultrasounds.
Right now I am planning for our Christmas pictures and know that back a year ago it was a real focus of mine...how would I get all the pics done that we needed but more importantly what would they wear.
Why did we get chosen for this journey God? Why does my son have to grow up without his twin? If TTTS is so rare then why did it have to be me that it happened to?
Yesterday my mom was telling me about someone she went to highschool with who's children have had 11 pregancies between them and only 1 live baby to enjoy. She said 'I thought back to all we went through last winter with you and realized that there are people who have it so much worse....and that we could have had it so much worse and came so close'. I know she says it to comfort, many people say this to me. I say it to me and I know it's true....many other TTTS famlies that I've met online have lost both their babes in the last month or so. I KNOW we are lucky, I GET THAT!!! But I still ache for my son, I still long to see his face, smell his baby smell, feel his heart beating and enjoy the moments of love and adoration that I have with Cameron.
This week I talked to Theresa, the minister we love dearly....also the mom of twins who were born so very early and journeyed a long and trying journey in the NICU. We were talking about doing everything right and knowing there was no blame on our parts. Then we spoke about how having answers about the medical 'stuff' helps. We know that Cole had a poor cord insertion and very poor placental share...that if he'd survived TTTS he wouldn't have likely survived the growth issues and would have been born super early or died later on anyway. We know that the doctor did, for the most part, all the scans he needed to do and all the checking they should have been done. He should have sent me to a higher level OB but it wouldn't have made a difference. And so that means there was no blame on the parts of any medical professionals. And then that means that the blame lies with.....yup you got it God. He made the decision, he controlled how my placenta formed, he controlled when the fluids became an issue and ultimately he controlled Cole's life and his death. God also controlled Cameron's life and kept him from dying.
And so for now I will try so hard not to be angry, not to blame and to forgive. I will try to move ahead and rejoice in the gifts God has given me....it just might take some time. And while I do it I'll just hold that little miracle that he blessed me with a wee bit tighter!!!

Tuesday, October 20, 2009

Devotion #19 - Forgiving God

The topic of forgiveness continues to plague me and seems to keep me from progressing on this journey of mine. I was and am so very proud of myself for being able to forgive and move ahead from those that caused me pain when we lost Cole. It is very hard to do this but it was something I knew I needed to do.
So then I moved into forgiving myself...another hard thing to do but once I realized (and remembered) that the guilt I was feeling was really surrounding my reactions to our news of twins and not really how I felt about their upcoming arrival....that I used the stress of it all as a way to prepare and ensure that we were ready and that I really was overjoyed at the news that I was carrying twins....I was able to move ahead and forgive myself..
And so the next chapter in the book was about forgiving God. It reminded me of how I felt and what I wrote on the chapter on being angry with God. I really truly thought I wasn't angry with him when Cole died. And even when I wrote the devotion on being angry with him I wasn't as angry as I was confused. Now I am supposed to write about what I haven't forgiven God for...and I thought this would be easy. But I wept and wept as I wrote and wept and wept as I read it outloud. And I realize I am so very angry at God and don't know how to forgive him for taking my son from me.
From the book Grieving the Child I never knew - "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 not about forgiving God because I believe that is keeping me from a closer relationship with him...I'm not sure I am at that place yet as a Christian. For me, forgiving God is more about moving forward in healing....being able to cope with the pain and loss and seeing the positives in everything that has happened.
The book tells a story of a young woman who lost a baby and had a friend who gave her a helium balloon and a marker. She wrote all of her hurts, her disappointments, her anger and all that she blamed God for and then released it to heaven as a way to sooth her soul. I didn't have a balloon nor did I want to release my feelings towards God this way as eventually that balloon will come down and who knows who will find it.
Instead I wrote a letter and read it to God in Cole's garden

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 didn’t 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 blame…I 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.

Then I burnt the paper....

And blew the ashes up in the air. They swirled around me and then scattered....some floating away to heaven and others falling gently around me in Cole's beautiful garden.
I can only hope that God can forgive me for thinking that I need to forgive him....he doesn't need forgiveness because he didn't do anything wrong...no matter how hard it is for me to accept that Cole is gone and was never meant to be a part of our lives here on earth except as the angel he is, God is all poweful and knowing and has a reason and a time for everything. I don't think it will be as easy to move on as this...just scattering my feelings and releasing them to the wind. But hopefully I can begin to heal knowing that God understands how hard it is and is here for me whenever I need him.


Saturday, October 10, 2009

A craptastic day....

I have been reading and posting on various websites lately that support babes with issues related to being identical twins. I am having such a craptastic time of it lately as I read about all of these babies that survive after such tremendous struggles. My heart aches for Cole and I want to be one of the lucky ones...why can't we be a miracle case with two survivors!!!
I've spent most of this week soul searching about my guilt and trying to forgive myself and I realized that maybe I am a whole lot closer to that then I thought I was. I wrote this in my letter to the boys on the anniversary of the day I learned I was expecting twins
"I have so often wrote about the guilt I have felt about not being excited about having twins. but when I look back I realize I was excited but I was also realistic. By being realistic and worrying about the things that were going to be hard I was beginning, early, to solve the problems we might have before they arrived. It seemed to me like I wasn’t enjoying my twin pregnancy when I first looked back at it but the more I think about it the more I realize and remember how much I marveled at all things ‘twin’. It was the most special time of my life and for as much as I wasn’t jumping up and down and showing overt excitement I know that I was so very happy, so excited and so eager to meet you both."
All it took was for me to reread this to remember, to think about the joy and wonderment that I felt when I learned about Cole and Cameron and how much excitement there was in being the mommy of twins.....oh how I wanted it even though it scared me so!!!
Which then tells me that although I've forgiven myself and don't feel the same guilt I thought I was feeling I am now grieving all over again. Doesn't seem fair does it. Why can't I be that twin mommy, why didn't we get to be the lucky ones? I don't even have to ask why it hurts so much because I know why...because I didn't get to meet my son, didn't get to hold him in my arms and caress his skin, have him snuggle up to me like his brother does, smell his baby essence and hold him like I'll never let go. It hurts because it's a loss that never goes away, a place of what ifs that never get answered and an emptiness that never gets filled completely. Life isn't meant to be fair or easy and in knowing this I know that I could let this emptiness consume me but what does that prove. How does that honour this special boy who's forever touched our hearts, who's kicks I felt in my womb, who heartbeat I heart so strongly and who loved me just as much as I loved him. And how does shutting down and letting it consume me show any respect for the little boy who survived and beat the odds? Or his big brothers who are such little miracles in their own rights?
And so, the tears are dried up....for now. I will try my best to not look at those survivors with such a jealous heart and try to remember how wonderful my life truly is!

Monday, October 5, 2009

Devotion #18 – Journey to the Snowdrift of Forgiving Yourself

I am teary already and I haven’t even started typing…as you can imagine, this is a very tough point in this journey of healing and faith. Admitting that I need to forgive myself before I can move on is tough….well maybe I should reword this to say that allowing myself to forgive myself, to let go of the anger and guilt is very hard. Sometimes I think it is easier to just feel this awful then to push myself to move on.
I have never blamed myself for the loss of Cole in the medical sense. There was nothing I could have done to prevent TTTS from robbing me of the ‘perfect twin pregnancy’…I did everything right and was healthier than I’d ever been with either of the big boys. But part of me has always felt like this happened to me because I didn’t want my twins enough….that I wasn’t joyful enough about their arrival, that I didn’t celebrate them enough and that when people congratulated me my most common response was ‘thanks I guess or I’m glad you are so excited because I’m not sure I am.’. I hate so much that I reacted that way. I hate that I can’t go back and take those reactions back. I hate so much that my children must have known how much their mommy wasn’t sure about being the mommy of twins. And yes, I do feel like maybe I caused this awfulness to happen to us by being this way. If only I had been happier, if only I been amazed at the miracle that was and is Cole and Cameron….if only I could have just been as excited as the people around me. I also feel tremendous guilt about how I felt about Cole after he passed away and after Cameron was born. I just was never really sure how he would have fit into our family, how we would have managed. I sort of felt…well feel still at times….that this was meant to be for those reasons not because God has bigger plans for Cole, for me and for our family.
Am I ready to forgive myself and move on. I don’t know, I honestly don’t know. Maybe part of me holds on to this guilt because it allows me keep grieving and being sad and in that keeps me holding on to Cole more. But that brings me back to things I said back when I started this blog…by not letting go, by wishing Cole was here and wanting to go back in time and change things then I am wishing for Cole to not be in Paradise and though I’d rather have Cole here, I know that his life is so great because he gets to go there sooner…none of the stresses, sadness, pain and trials of life will ever touch him.
My guilt, anger and self condemnation keeps me from God and things that keep us from God are ultimately sins. I need to forgive myself and ask God to forgive me for keeping myself from him. Am I ready for this…I hope so. I think by admitting it here that maybe it’s the first step to the end of this journey….and HUGE step forward.

God I feel so guilty for the way I felt in the early weeks after I learned of my twins existence. I often blame myself for the loss of Cole because I feel like I just didn’t want to be that twin mommy enough and wasn’t joyful enough about them. Although others try to comfort and console me, deep down inside I’m haunted by the thought that if I’d only been more excited about them, only been able to be only positive about their arrival then maybe I’d have them both here and wouldn’t have this label of being the mom of an angel and a survivor. I feel completely snowed in from my grief. My mound of self-condemnation is so high outside the door of my heart that I feel as if I’ll never be able to dig out. Help me God. Enable me to forgive myself. Dig through the snowdrift of my guilt and melt away my blame. You are the One who has the power to set me free.
Amen


Friends – if ever there was a time during this journey of grief and healing that I need your prayers, now would be it. I am really struggling right now as I admit what holds me back and try so hard to forgive myself and learn to not feel guilty. I have a feeling it’s going to take awhile to move forward from here and am not sure I’ll be able to do devotions for a bit as I work through the feelings evoked from this one. Thanks for your support, your love and your prayers.

Thursday, October 1, 2009

Devotion # 16&17 - Hidden Unforgiveness and Forgiving Others

It’s been a really long time since I’ve posted…or atleast it feels that way to me. The next two devotions are about forgiveness and how that can get in the way of your healing. It is so hard for me to admit that my unwillingness to forgive some people about how they’ve dealt with our loss is keeping me from moving forward in my healing journey and keeping me from being closer to God.
I remember talking to a doctor at my 6 week check up about post partum depression…I mean lets be honest, I’m a pretty good candidate for it this time around you’d think. She said to me “well you seem to be doing very well, I’m not concerned about you at all. You are dealing with it all, talking about it and you look good”. My thought…boy I was fooling her. And I think I do that a lot. Sometimes I think people must think I am the most casual person when it comes to sweet angel boy. And then others seem to think I should be moving forward faster, focusing on the gift of Cameron more and not dwelling on the loss of Cole and what could have been.
But no one really knows what goes on in my head….including me. And when I ask God to help me, to guild me to see what is holding me back I know that one of the things that holds me back is ‘unforgiveness’.
I know I have come very far in this journey of forgiving. At the start the person who I’ve had the hardest time forgiving was the person I talked about the most. I was so very angry with him for making me feel like my loss wasn’t of any value and with his unwillingness to share our sad news with some people who were important to me. I told everyone about what he’d said and done and everyone agreed with me…the guy was an ass and the most insensitive jerk they’d ever heard about. The grief therapist we saw in December told me to write him a letter to tell him how I felt…but of course not to send it. It helped and I moved on somewhat but I never forgave him and even now it is so very hard to do this. But I realize, especially after speaking to someone this week about where his life has gone since I last saw him, that he is hurting so much and suffering enough already without me hanging any more guilt on to him. He has some pretty serious issues of his own and I’m sure those relate to why he treated me, my loss and my family the way he did. He is not where he wants to be in his life and not where he wants to be with God either I don’t think. By not forgiving him I am keeping myself from moving on but worse than that by being angry with him and holding him accountable for what he said and did I am putting more stress on someone who needs my prayers not my anger. And so there it is…I forgive you S.P….you deserve this and so do I. I pray for you that you will see how your actions have hurt others and that you will be able to find the help and support you need.
I also need to forgive those who I felt so ‘forgotten’ by when all of this happened to us. There were so many wonderful people who supported us through our entire journey and continue to support me…I hear from some them every week or two…they are so truly amazing. And unfortunately there are also those who just weren’t there for me, those who I was so certain would come to see me and call me often when I was in London and that just didn’t happen. I do not know if I’ll ever know why this happened but it did make me realize that we all change and grow as we get older and our friends change too. Sometimes it’s just time to let go of some friendships and learn to treasure new ones. So I forgive those who I felt so forgotten by, who I felt so unsupported by. It doesn’t matter anymore and it’s time to move forward.
The other area of unforgiveness lies with my doctor and isn’t too significant anymore though I think it was a few months ago. I know that he did what he thought was enough…enough ultrasounds, enough check ups. There really was no way to know what was happening within my body, within my placenta. Cole hid his complications and pain from us for good reasons and there really was no reason for my doctor to send me for better scans. I forgive him for missing the problems with Cole because I know that it was meant to happen the way it did.
And last but not least, I forgive all of those people who’ve said the unkind words that minimize our loss, those who just can’t understand that Cole is forever part of my heart and telling me that it was for the best isn’t EVER going to make me feel better. I forgive them in Jesus’ words “Father, forgive them, for they know not what they are doing”.

God help me to forgive these people and others in my life who upset me with their actions, words and lack of support. It is not my right to pass judgment on anyone nor is it my right to blame. Help me release my blame and move forward. Release me from my anger and fill me with Your love and forgiveness so I can continue my healing journey.

Friday, September 25, 2009

A special picture


Just had to add this picture here...thanks to Tammy for giving me the idea on how to create a picture of my boys. This is the first time I think I can honestly say that I feel like I can see Cole, picture him and Cameron together....and it feels GREAT!!!

Devotion 15 - Jesus Has a Rocking Chair

Have you ever wondered about someone who's passed on to Heaven, ever wondered what it is like there? What soothes you when you think of them there?
This book talks about Jesus having a rocking chair and our children rocking gently in it with him. I love the image...I am a real rocker and have often wondered about who's looking after Cole in Heaven. There have been a few loses in our lives over the last few months...women who've passed away before their time. I take comfort in knowing that someone with experience is up there playing Mommy and Grandma with Cole while he waits for me to arrive.
But the real message behind this entry is of music and how it has affected you through grief. There are listings of songs that might bring comfort to a grieving parent.
Anyone who knows me knows that music has been a part of my life for a very long time. I play many instuments and I LOVE to sing. If you are reading this then you are listening to some songs that mean something to me, especially during this journey. I'd planned to add some of the songs we used at the memorial service but I can't find them on playlist.
I know that God surrounds us with music and the ability to rejoice through it because it is so very poweful. I am often cursed with tears in public when I hear songs that evoke emotions and memories of someone who's passed away. But just as quickly as I cry I also smile because I know this is that person's way of saying hello!
So when you hear 'How Great Thou Art', especially by Alan Jackson, know that this is a special song for me and one I feel a great connection to all the angels in Heaven while I listen to it. If you see me crying in church, in my car when the radio plays, while watching TV or just when some sweet child sings a special song, know that I am hearing Cole's voice and knowing that he's right here with us all.

Monday, September 21, 2009

A Reminder

I just posted a devotion that I typed yesterday and thought I'd read over some of the past ones as I often do...a great way to remind myself how far I've come. Today as I did this I held a wiggling Cameron in my arms.
Anyway, right now as I type and as I read a few entries the music played. As 'Angels Among Us' came on. Cameron stilled, looked at me and laid his head on my shoulder and then he sat back up and I sang this song to him...and I cried.
He truly is an angel among us and a blessing and gift from God. I am so very lucky and blessed to have all 4 of my children but Cameron will always remind me a bit more that angels really do live among us. He is filled with joy. I truly believe he has the zest of life of the two little boys who resided in my womb together and often say that I don't think he would have the same personality if his twin brother had survived. It's kind of like I get to have them both but in one body instead of two.
Thank you God for Cameron...I am the luckiest Mommy in the world!!

Devotion #14 – God , Where are You?

Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9b

Never will I leave you; never will I forsake you. Hebrews 13:5


There have been so many times since Cole passed away that I have felt so very alone. I feel so often that people just think I should move on and focus on what is good in my life and be grateful for what I have not what I am missing out on. So often it’s the silence that makes me feel this way…the times when no one mentions Cole, when no one acknowledges the struggles , the sadness, the loss and the unbelievable journey that the last year of my life has taken me on. It’s kind of like it never happened or like everyone else’s lives are the same and mine is forever changed.
Sometimes I feel like God has left me alone in this journey too, that he’s leaving me on my own in a sort of sink or swim scenario. I am not always sure He is listening to me when I ask for help to get through this intense grief. I know that He didn’t listen when I asked for him to save both of my sons. Coming to terms with the fact that I may never know or understand the reason for the ‘unanswered prayers’ is really hard for me. I ask God to help me with this, to help me to feel less guilty, to accept that He is all knowing and all powerful and to basically show me how to move forward. But so often there is just silence.
Where is God? Why isn’t He making this easier for me? Why doesn’t He just take away this pain?
Coming to terms with the fact that God hasn’t abandoned me is just about as hard as coming to terms with ‘the unanswered prayers’. Accepting that this is His plan on His timeline is a very hard thing to do. Learning to trust God through the silence is so very hard. I do not know how God wishes to reveal himself to me. Learning to listen to the silence and waiting in it is so very hard for me.
But He has not abandoned me or rejected me. His is my Healer and he wants to help me to grow and trust Him more. He is here listening, caring, feeling my pain…even when I don’t hear from him the way I want to.

God – sometimes I wonder where you are. You didn’t respond in the way or timeframe I thought you would. I feel so abandoned and hurt at times. I feel disconnected from you and from so many who I call friends. Are You listening? Is Anyone? Silence makes me uncomfortable and rejected. Even though I can’t see You, I must trust that You are there. You say You will never leave me or forsake me. Please be my Healer. Help me grow and trust You more. I want to know You through the silence and quiet times. Show me how.

Saturday, September 19, 2009

The First One Year Anniversary

God be with me today as I remember the news we learned one year ago at my ultrasound...TWINS!! I am feeling an overwhelming amount of feelings today and am hoping you can guide me towards feeling the joy that day brought me and help me to remember the good times.

Dear Cameron and Cole;
Today marks the anniversary of the day that we learned that two little lives were growing deep inside me, not just one as we had assumed. It was a day that marked the beginning of my life changing forever.
There are so many things from that day that I’d change if I could but I can’t. So instead I am going to try to remember as many things about that day and the days that followed as I can.
I still remember the ultrasound tech saying ‘I have some news for you…there’s two babies in there’. I teared up as she showed me the two of you for the first time but it wasn’t tears of sadness or even of joy…just of disbelief at the amazing thing that was happening.
When I left that office I went back to the lab to take my paperwork in . The girl that had done my blood work took one look at it and smiled and said “wow, that’s amazing”. And it was, and I felt like it was too.
The world kind spun around me abit as I walked out of the clinic and tried to call Daddy. I was mad that he hadn’t been there to meet you guys with me, disappointed that I couldn’t get a hold of him when I so desperately needed him and starting to feel more and more overwhelmed.
I actually told Charlotte, my midwife, before I told Daddy. She answered her phone when I called. She quickly assured me that it would be okay, that she was here for me for whatever I needed and that she knew I could do this.
Then I went to tell Daddy. He came around the corner of the van and asked me what I was so worked up about. I think his comment was ‘what is it…twins?’ When I told him yes he broke into a huge grin and started hugging me as I, admittedly, cried. He told me it was going to be fine, that we would make this work. I was becoming increasingly overwhelmed with the thoughts of two newborns, no room in the house, double daycare etc. Daddy kept assuring me it was going to be fine.
I had to leave to go and get your brothers from Cheryl’s as I was already an hour later than I had thought I would be. I called Grandma on the way there and got her while she was walking through the IPM grounds. I told her she needed to sit down. When she asked me why I told her I’d had my ultrasound today. AND was her response. When I said “it’s twins mom” she said “no shit, Jod!!!”.
I really don’t remember a lot about telling your brothers. I am sure I told them at Cheryl’s when I told her but the whole thing kind of blurred together. Cheryl was excited but also, being the realist that she is, very honest about how hard it was gong to be for us.
And as I drove to Teeswater to attend the IPM the world began to spin and shift again and I cried again. How could I do this, how could I manage? How could we afford this? Why us?
But then my typical organizing self took over and began crunching the numbers…if I had this many Epicure parties a week, found a weekend shift doing this, got this much government money for ALL the kids I was going to have….yup we could do this.
That day in Teeswater was one of the best days of my whole pregnancy. I saw Grandma and Papa within a short while of reaching the IPM and they were both so excited. Papa even picked me up in a huge bear hug. They had told so many people already and we all continued to tell everyone all day. I showed the ultrasound to everyone I saw. I loved the attention that you were bringing me. Everyone was so very excited and although I was overwhelmed and scared I was pretty excited too.
The next few days continued like this for me…feelings of excitement mixed with worry, fear, and an intense feeling of being completely overwhelmed. So many things kept me up at night and I went about 4 days with very little sleep. Everyone was so very happy and excited for us and so many people came forth with offers of baby equipment, clothes, help and support.
I have so often wrote about the guilt I have felt about not being excited about having twins. but when I look back I realize I was excited but I was also realistic. By being realistic and worrying about the things that were going to be hard I was beginning, early, to solve the problems we might have before they arrived. It seemed to me like I wasn’t enjoying my twin pregnancy when I first looked back at it but the more I think about it the more I realize and remember how much I marveled at all things ‘twin’. It was the most special time of my life and for as much as I wasn’t jumping up and down and showing overt excitement I know that I was so very happy, so excited and so eager to meet you both.
Every time I had an ultrasound I asked for copies so I could show off my latest pics of my babies. I remember returning to work and showing them off each time and then rushing home and scanning them and posting them on Facebook. Now if that’s not an excited mommy, I don’t know what is!!! I also remember the joy I’d feel as I got to see you moving on the screen, the wonderment of it all!!!
It was pretty early in the pregnancy when I started feeling you moving…just flutters at first, but lots of it. It never got be a lot of distinct movements, never got to the stage where I felt like I was being kicked all over. I wonder now if that was so I wouldn’t miss as much being pregnant with two active babies after God took you home Cole. But you were both busy boys for a few weeks. And you sure made mommy grow bigger and bigger. By Uncle Josh’s wedding in mid October I was suddenly blooming and looked like I did at about 5 months with your brothers…and I was only 15 weeks! By my birthday a few weeks later I was wearing clothes I wore at the end of my pregnancy with Zack and by early December people were asking if I was due in January.
I dreamed of matching outfits, matching Halloween costumes (that I wouldn’t put on you… I swore I wasn’t going to do that to my twins!!). I wondered all the time if you were boys or girls. I joined twin groups, searched hours for strollers and finally in early November ordered the ‘perfect’ one. I looked for cribs and equipment every place I could and spent hours planning and getting ready.
It was the most exciting time of my life and I loved every minute of it.
And since today is about the memories of the good times, of the coolest day of my life I am going to sign off now by telling you both that I love you both so very much!
Love Mommy

Tuesday, September 15, 2009

Devotion #13 - Why Do I Feel So Guilty?

Oh such a topic so close to my heart...the guilt I have overruns at times and I have no idea where to go or where to turn. This chapter talks so much about the guilt parents, especially moms, feel about why they couldn't save their baby. I have some of those feelings as I had wondered if I should be doing more to help my babies gain weight as suggested in twin books. I also kept a mild exercise routine up after my OB gave me the no walking, no lifting, no sex etc . speech. (but this was all to stop premature labour so really isn't applicable to me). I also feel guilty that I didn't educate myself more as I would have had other questions to ask, tests to insist on etc. But do I really blame myself for the loss of Cole...not at all.

Do I feel guilty about issues surrounding him...for sure. I've talked about them before here but today is a good day to really get into it and try very hard to press 'stop' and focus on the One who understands my suffering and can free me from this guilt.

First though for a list of the things that make me feel guilty:

1) I feel tremendous guilt that I wasn't overjoyed about being pregnant with twins...really about being pregnant at all. I was excited at times but so often the worry and stress overshadowed that joy. I feel like this negativity brought forth the troubles we had and the outcome of the loss of Cole.

2) I feel guilt that I am not always sure that isn't the way it was meant to be anyway...that we could never have managed 4 children, never have survived financially, emotionally etc and that is WHY this happened.

3) I feel the most guilt though because I don't know how to miss Cole...I say I miss him, I am so very sad that he is not here but sometimes I think I just do and say those things because the world expects that. I don't know how to miss someone I never met and someone who I wasn't sure how he'd fit into our lives. I feel horrible that I couldn't touch him, hold his flesh in mine, kiss him or look at him really when he was born. I feel awful that he really isn't even real to me anymore...I don't know how to deal with this confusion, this emptyness I feel. I wish he'd be born alive or born with hours or days of dying so that it would seem more real to me.

At first I didn't get the verses that go with this chapter...I won't type them out because the it's easier to just type what they are about...basically they talk about how God controls everything. I was sitting here thinking to myself 'but what does this have to do with my guilt...God controls that???'. And then I realized as I read further...it's not the guilt He controls but the action itself. He took Cole from us, He is all powerful, has supreme authority and power. He controls Everything!!! How does this change my perspective?....

Tough question for me at times. It changes it in that I know that I had no control over any of the things that happened to us. It doesn't matter that I wasn't overjoyed at the news, that I didn't spend the time with him that I would have liked or that sometimes I know it is easier. The guilt doesn't matter because I can't change anything. I can be angry about it if I want but anger is so powerful...but doesn't change things either. I didn't get to choose this for my family but I do get to learn from it. I can see now 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...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 neither should I.

From that I realize that I have no right to pass judgment on anyone. I don'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.

Each time I feel the need to play back all the things that happen and question whether I made the right decisions, felt the right emotions, reacted the 'right' way I need to stop and remember that God is in control and He will guide me in the right path.

God;

Sometimes I feel like there are more things I could have done to save Cole but most of the time I just feel so guilty that I wasn't as excited as I should have been and didn't my pregnancy for what it was...a miracle from you. I keep replaying my emotions and reactions to the things that happen all the time. Please help me to press 'stop' and look to You. You are the answer, You are sovereign. Nothing can touch my life without Your permission. Free me from my blame and guilt. Help me to press stop on this tape when I feel guilty and to put in a new tape today and move forward.

Friday, September 11, 2009

Devotion #12 - Why am I so angry?

Reading this chapter, working at this devotion has made me realize just how many things there are to be angry about and just how perfectly natural it is to be angry.
When I was in the hospital in London my social worker spent a lot of time getting me to talk about my feelings. At the time I was so sure that I wasn’t angry…actually I was shocked because I wasn’t angry. I think it was part of the coping mechanism that carrying Cameron and Cole became after Cole passed away. I think I was afraid to get angry for fear that Cameron would feel that anger or that it would take away the strength I needed. I was more angry that I was so out of control of everything in my life than I was about the fact that I’d lost my son.
So many things make me angry lately. Reading stories about TTTS mom’s who didn’t lose either of their babies makes me so mad. I often bitterly exclaim after reading their stories “You don’t know how good you’ve got it…you are so damned lucky”. Seeing or hearing about mono di twins that had no troubles at all makes me even more angry. Some of the things that make me most angry are the things like I wrote a few days ago…people who don’t recognize Cole and his loss as important as other people's loss, people that don’t recognize him as a valued part of our family, people who minimize our loss.
Do good Christians get angry? You bet your boots they do. God gets angry too….just look at Adam and Eve or Jesus in the Temple with the moneychangers. Sometimes it is easier to be angry at God. Sometimes I just want to scream at Him “You had the power to save my son, you could have stopped this awful disease from happening. You could have protected my baby by performing a miracle and saving him but you didn’t!!!” Why?”
I am not sure I know what all is behind my anger. Envy of other twin mommies, disappointment that my twin pregnancy didn’t work out, fear that I will stop remembering the twin moments, the movements and the visuals I have of Cole. I am encouraged to try to write to God about all that makes me angry and how I feel about it....so here goes.

Dear God;
This isn’t a prayer to you today but rather a letter to tell you how I feel about the journey you have placed me on.
I don’t understand why I have been chosen to take this journey. I am certain it can’t be that you have great things planned for me because many days I can hardly stop myself from being such an angry and sad person.
I am so very angry that my life has become what it has at times. I do not understand why you took Cole from us and I don’t understand why if I wasn’t meant to be the earthly mother of twins then why did you create them inside of me. I hate that I wasn’t happy at the start, hate that I can’t take back those moments and feel the joy that a twin pregnancy could have given me. I am angry that you didn’t allow me to meet my son before he left this earth and even angrier that I couldn’t bond with him, with his body, when he did finally arrive. It hurts me so much that I missed out on the joy of his delivery and even of Cameron’s delivery because I was so caught up in my grief.
I am angry that I missed so many months of my older children’s lives and that my family and marriage has felt such serious strain and stress. I am not sure we’ll ever recover form this some days.
And yet as I express all of these things to you I am also so very grateful for the wonderful gifts this experience has given me. Cameron, the most amazingly peaceful and happy baby, my other boys and Geoff…who I watched struggle and grow in strength while I was away, the love of family and friends, the support I never knew existed for me, the new friends….some of them life long I am sure. All of these things happened because of Cole. These and so many other wonderful gifts of love and hope from You.
I can only hope and pray that soon the anger will be overshadowed by the peace, hope and joy that your love gives us all. I want the feeling of Joy and Happiness to come first and the memories of Cole to bring me smiles not tears.

Get rid of all bitterness, rage and anger. Ephesians 4:31

Devotion # 11 - Drowning in a Sea of Why

The subject of why is one that plagues me all the time. Why did our severe TTTS take so long to show itself…why was our diagnosis so late and so severe? Why didn’t the poor cord insertion show up on ultrasound? Why didn’t Cole pass away sooner when all signs point to such a poor placenta? Why was the pregnancy so perfect until that point? Why did I only lose one baby (not that I’d ever want to change that…but why??)? Why did I not go into labour and have my boys sooner…when all signs showed that this would happen?
Why, if I was only meant to bring one baby home, did I get pregnant with twins in the first place?
Most of the obvious questions such as what happened to cause Cole’s heart failure (excessive fluid in his body), why did Cole die so quickly (because TTTS happened so late and the boys were so close in size there was much more fluid going to his body and therefore his heart was working so very hard), was there a chance to save him if we’d known sooner…guess this questions ties to a lot of the ones I asked above (there really doesn’t seem to be much chance that things could have been much different because Cole had only 25% or less placenta share and a severely velamentous cord insertion so far from the placenta that nutrients would have struggled to reach him once he got bigger – if he’d survived TTTS he likely wouldn’t have survived SIUGR and it most likely would have meant major effects on Cameron as well) and did we do all we could have done for Cole (yes, I took great care of myself…the healthiest pregnancy I ever had, had tons of tests and ultrasounds and kept myself fairly educated)….all of these questions have been answered. I got some reports to find some of this information out and asked others to help me understand it. Some of the questions regarding the ultrasounds that could have detected problems could be answered by my OB and I may need, in order to heal, to go and see him to ask him some of this stuff. But knowing it isn’t going to change the end result…I already know that there was so little chance for Cole.
As for why I didn’t lose both, why I didn’t go into labour, why everything was fine for so long etc….I think only God and Cole can know that for sure but I’m pretty sure that like the answer to why I got pregnant with twins and only am able to raise one of them, it’s because God is there for me, to lift me up when my life hits rock bottom, to be my salvation and my hope. There is purpose behind all the He does, He is always and forever there for all of us.
I came to the conclusions of this devotion months ago…that like Job there are questions that we have that may never be answered. I have said for months that there are things this side of Heaven we are not meant to understand…and that we had better all do whatever we can to make sure we live good Christian lives so that we make it there and do get those answers. But what I didn’t think of at all till I read this chapter was that it isn’t about the why’s but rather about the who’s. I must learn to look beyond the why and view my loss through the lens of God rather than human sight. In the book of Job there are sixteen why’s asked and in response there are fifty-nine who’s which refer to God. A good place to start don’t you think…some reading to do for sure.

God;
Even though I don’t understand why this has happened to our family and maybe never will, I know that You are unchanging, trustworthy, in control and good. I believe You have a purpose in what has taken place…a purpose for me, for Geoff, for our older boys and most especially for Cameron. He is, most definitely, an Earth Angel, a Miracle and a true sign of your divine blessings and goodness. Forgive me for asking the same questions over and over. Lift me up again with Your hope and truth. As I continue to journey through questioning and move to a place of hope and healing please rescue me from drowning in despair. Help me trust You with all my heart and not lean on my own understanding. Give me divine vision and enable me to see beyond the why to the Who.

Wednesday, September 9, 2009

Venting


Okay so I've already posted twice today but I just finished updating our family blog (see sites I love link). I posted this beautiful picture of a garden statue we received from a most unexpected person. Isn't it perfect!!!
Anyway, it got me to thinking about minimizing our loss...again. We often will donate money to purchase statues like this, flowers or make a group donation when someone we know passes away such as a neighbour or relative.
And for all the lovely statues we do have in Cole's garden, all the beautiful flowers and plants and the many garden stones, we have nothing from the group that most recently asked us for not one but two donations.
It makes me wonder...if Cole had been born alive and died then or within days or weeks or even if he'd died as he did inutero and been born right away would we have gotten something from this same group. Is it selfish of me to think this???
Why can't people recognize that just because you didn't get to meet a baby who passes away, especially when it's one who's left behind such a visual reminder of his existence, it's still a tremendous loss to that family and should be treated as such. It feels like such a slap in the face when they ask us for money and most of them never even sent a card when we lost Cole.
UGGGGG!!!!
Okay venting is done for the day!!!

Devotion #10 - Husbands and Wives Grieve Differently

You may notice that these lengthy devotions are posted on the same day...no worries, I haven't been hiding in my basement again. We've welcomed an exchange student into our home for a few weeks and she's sleeping in the room where our office is. With the busy times of school starting last week (check out my other blog for pics of that) I didn't have as much day time to blog so I did it on our laptop (not internet connected) at night and transfered here today...finally. I also added a playlist feature with some songs that remind me of Cole and my journey of hope, healing and faith.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

This is by far one of the devotions I’ve struggled with publicly writing about the most. It’s like airing your dirty laundry in public….no one wants to do that. But then again this is likely a subject that no one will be too surprised to hear what I have to say or how hard it is to write about.
So let’s begin with the first question…how do Geoff and I grieve differently. Let me take you back to the beginning. When Dr. Yiagi, the cardiologist at Sick Kids began scanning me on that fateful day in December Geoff was standing near my feet watching the screen. He saw that Cole’s heart was no longer beating, he knew right away. We weren’t given time to be together at that point, the doctor just pulled the ultrasound probe away from me and let me curl up and cry but then quickly was back to business. Geoff was the one who began to make phonecalls but for me this was the start of where I felt us separating in our grief. He needed to act and I needed him to be with me. For the rest of the time we were in Toronto it was like this. He kept his grief from me a lot and would go for walks and smoke breaks to keep his grief hidden. I was always so public with mine.
Once we were home he seemed to be able to move forward better then me….but then again he was working and had something to distract him. The same could be said for the time I spent in the hospital…I felt so much grief and loss and he seemed to coast through it and was more upset about having to handle things at home then with the loss of Cole. The flip of this was that I had so many people to listen to me...professionals, visitors, other antenatal friends and people who read our caring bridge page or who I met online. Geoff had no one really and I'm sure it was a very lonely time for him.
The week leading up to the birth of the boys seemed to change that somewhat and he became more and more affected by grief. For him it would come out in bursts of misdirected anger and sullen moods.
For me I struggled from day one. I’d felt Cole move…first, most often and most intensely. I bonded with that little boy, I carried him and loved him from his first flutterings. I felt a tremendous sense of loss, of confusion and of utter disbelief. As time went on I began to accept things as reality more and thought I was dealing with our loss better as well. Really what was happening was that it was all becoming very clinical as I saw atleast 2 doctors a day, had ultrasounds, NST’s and bloodwork all the time…I was simply a product of the system.
Geoff and I came back together in our grief on the day of delivery. I think I actually dealt with the loss of Cole and the reality of delivery better then Geoff…that day anyway. And as I stayed with Cameron in the hospital I became distracted again with what our loss really meant. Until just before he was to come home….then it hit like a ton of bricks….I was only taking one baby home!!!
Geoff seemed to have accepted this within days of the boys arriving and since then he’s, for the most part, shown little emotion about the loss of Cole (note I said shown... not necessarily how he truly feels but rather what he shows on the outside).
I struggle so much more, cry so much more often …or so it seems. But then we’ll have chats about how it feels to see twins or what we think it will be like on the anniversary date of finding out we were expecting twins and Geoff will say things that make realize he’s hurting in his own way too. But really I feel alone in the sadness and grief that the loss of Cole has created. I don’t’ think Geoff understands sometimes how hard it is to do all the ‘mommy stuff’ with Cameron as it is a constant reminder of what I lost. Even just nursing Cameron is a reminder. The pain is so intense sometimes and I feel like he’s just able to move on 3 steps at a time while I go one forward to two back somedays.
Sometimes I think our grief has drawn us closer and other times I am not so sure. For the most part we talk more about our feelings and the love we have for our children. We talk often about Cole and how we feel about him. But there are also some intense moody times that are so very hard on everyone.
We sought some help but it seems hard for both of us to ask for help, to talk to an outsider about what hurts the most. It’s definitely an area we need to work on (and incidentally I have yet to call for counseling for me either…but I will, really, I promise). Perhaps admitting here that the mood swings, depression and struggles we have through our grief are affecting us and the relationships within this household is enough to push to me to take action.
God;
Geoff and I have been through so much in the last 9 months and are forever changed because of this journey. Sometimes I feel so alone and sometimes I feel like the gestures and actions he uses to comfort me only make it worse. Forgive me for not remembering that we are entitled to grief in our own ways just was we were entitled to love in our own ways. Help me to remember that although my love for Cole was different than Geoff’s for the obvious reasons of maternal bonding it doesn’t make it any more or less important. Forgive me for the way I feel and for wrong actions and words I’ve spoken to him. Help me to be sensitive to him. Transform my hurt to hope and the distance I feel to a deepened relationship with You and in that a deepened relationship and understanding of the man that I married.