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!