Thru Grief, Hope, Dreams, Love and the blessings of God.. I am moving ahead after Twin to Twin Transfusion Syndrome changed me forever.
Saturday, September 28, 2019
Living in the Shadow of Loss
Have you ever thought that you are living in someone's shadow? Have you ever thought that you carry more baggage then you should have to, then is really yours to carry or wondered at the heaviness that seems to be a part of your heart and aren't even sure how it got there? Have you ever looked at someone else oh, maybe even your own children, and wondered how they are going to make out with the hand life has dealt them? I ask these questions because in the last few years I've had a few encounters with friends who've lost a child and, in watching their grief journey, in remembering our own grief journey, I often wonder about the siblings, especially the surviving twin sibling, and how our grief manifests in them.
Very early in my loss journey, probably within the first 6 months or so, a relative of mine contacted me with concerns about how much I talked about Cole. She spoke from the heart because she grew up under the shadow of loss herself. Her sister was killed in a car accident and life in their house was never the same again. Not surprising, how could life ever be the same after you lose a child or sibling? But her concern wasn't really about life not being the same but rather about my own children growing up feeling like they were being compared to their sibling that had passed away. It's sort of that comparison that can leave the person feeling like they're just not enough.
At the time I was a little bit hurt and yet really appreciated the wake-up call. It made me reevaluate how I presented things to my kids and it made me more cautious about how Cameron perceived his twinship.
I think I've done a good job but it's also been a 10-year project in the making. We've always been very cautious and how we talked about TTTS to Cameron and and how Cole’s illness, the cause of his death, is presented to him. For those of you who don't really understand what happened in TTTS, in mono di twins the babies share a placenta. As that placenta was formed, vessels grew across it connecting one baby to the other. In about 80% of the cases this is not a problem, although the babies are connected, the blood stays circulating within each baby side of the placenta and there are no issues. But in 20% of the cases something happens and the blood begins to shunt from one baby, the donor, across the placenta and into the other baby, the recipient. And that's what happened with my boys. Cameron was giving up blood and it was travelling across the placenta into Cole. It made his heart work harder, which made him urinate more, which increased the fluid that he was swimming in, which made his heart work even harder. I guess just a vicious circle. If we presented that to Cameron, in the wrong way, he could have grown up believing that he caused his brother's death but giving him his blood. Or if he'd been the recipient, the Cole in the situation, he could have grown up believing that he took so much from his brother that he caused his twin's death. So we've always been really cautious on how we presented it.
But that's not the only reason we were cautious. We also have never wanted Cameron to grow up thinking he wasn't enough. We've always wanted him to understand that he was his own person, and although he is a twin, he is not half, not a portion, not an incomplete part. He is an individual and he is awesome. And while we wish his brother was here, that doesn't take away from who he is and what he has become. We celebrate how awesome it is that he has a twin brother, that God chose them to grow together right from the start. But we stop it there. We separate it at that point and choose to celebrate the amazing gifts God gave each of our kids and make sure they know how proud we are of them. We let them know they are wanted, loved, cherished and valued individuals and members of our family. We want them to know that they are enough.
All children need to grow up feeling this way but I think it’s especially important when they are growing up after the trauma of losing a sibling...even if they were too young to remember. I am not saying that they should not grow up knowing about their sibling. The exact opposite actually. They need to know about them, to hear about them and feel the love you have for them so they can connect with them too. But they also need a healthy balance between life and death, between gentle loving reminders and constant connections. A balance between some tributes, photos and mementos and visual reminders in every room. A balance between their name spoken occasionally and their name being part of every conversation. A balance between celebrating the milestones they are achieving and grieving over the fact that their twin isn't their to celebrate this milestone.
The biggest reason for this, in my opinion, is because they need to feel that they are important, that they are enough, that you are delighted in them. They continued to live and build memories. Their life didn’t stop. They need to see that celebrated. They need to feel that celebration with all the positive, life giving energy you’ve got. Their photo wall gets to keep growing. Their shelf of things that remind you of them keeps expanding. They keep getting bigger and that means the shadow they cast should also keep getting bigger. They shouldn’t be growing up under a shadow and they won’t be if they are celebrated for the joyful blessing that they are. Let their milestones and achievements be theirs, let them have their birthdays, their first steps, their first haircuts, their first day of school or sports be theirs and theirs alone. In your heart you can weep for what should have been but our surviving twins and our surviving children need to feel celebrated without any shadows over them!
Friday, September 27, 2019
Who You'd Be Today...Who I'd be Today
Today is the 13th birthday of an online friend's twin boys. Only instead of celebrating with 'sweaty, fighting, confident, scrawny teenage boys' she went to the cemetery. Instead of their whole family celebrating these boys becoming teenagers together, her ex-husband went to the cemetery himself and she and a friend are taking her girls.
She wrote about how much life changed because of the hand they were dealt 13 years ago today. She wrote about about how much things changed for the worst 13 years ago today. She talked about how much things have changed and how much courage she has now after living life after loss. And she wrote about how different she is now, how life before and life after are just so different.
And as I read her post this song popped into my head.....
I've thought of this song often over the years because I do often wonder 'who' Cole would be today. We all do. We talk about it sometimes. Would he be talkative, loud and energetic like Cam or would he be more reserved. Would he live life as big as Cam or would he take a back seat to Cam's antics and sometimes dramatics? Maybe he'd be a deep thinker and feeler like Brycen. Maybe he'd have a rebellious streak like Zack. Who knows? I could spend a life time feeling wishful and wanting to know....but I turned most of that area of my brain off years ago. It just hurts too much to think of that sometimes but more than that, it doesn't do justice to the boy that Cole did become...the one who inspires passion, dedication, caring and a supportive nature in the family he left behind.
But that doesn't mean that songs like this don't cut deep.... read the words and think about someone you've lost far too early...
Who You'd be Today
Sunny days seem to hurt the most
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone
I wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
I still can't believe you're gone
It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Would you see the world, would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy
Settle down with a family
I wonder what would you name your babies
Some days the sky's so blue
I feel like I can talk to you
I know it might sound crazy
It ain't fair you died too young
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Like a story that had just begun
But death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Today, today, today
Today, today, today
Today, today, today
Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday
Someday, someday
It's impossible not to feel some pain.
But now I want you read those lyrics again and think of yourself, the person who loved and forever lost a part of their heart when their loved one left them far too soon.
Do you wonder who you'd be today if it hadn't happened?
I know I do. Often. in difficult moments, I wish the old me could come back. The old me who was more innocent, less passionate, who wore her heart on her sleeve less. The old me who thought the friendships she valued would be there for life, the girl who thought she'd experienced the worst life had to offer when she lost her boyfriend to cancer, said goodbye to a special friend who died in a car accident, helped a special family she worked for say goodbye to their very special little boy. The old me who didn't get triggered by a variety of images, memories, smells, sounds and words.
I wonder who I'd be today more often than I want to admit. Sometimes it's with a sad heart when I think of all that got lost on that fateful day, of the girl who got left behind. I wonder about friendships that didn't survive the loss. Of a marriage that has never been the same. Of goals and plans that never got realized when priorities suddenly changed.
But then I also wonder if I would be who I am today, the person I am actually sometimes proud of, if my heart hadn't shattered that day. If I hadn't had to pick up the pieces of that broken heart and try to figure out how they could fit back together with a big piece missing, would I have appreciated my kids as much as I do and valued their uniqueness? Would I have found a way to put the feelings that come with loss on paper and been able to offer them as a comfort to others? Would I have a passion for helping others, would I care so much, invest so much of myself in being there for people I've never even met? I wonder if I would have ever gained the knowledge base about babies, pregnancy, complications, procedures, ultrasounds, doctors and clinics etc
Death tore the pages of life as I knew it away and, while I sometimes miss who I was, I love who I am. I live for the hope that salvation gives me, the knowledge that I'll see my son again in heaven. Maybe the old me will be found there too and then I'll be fully complete and whole. But since I don't know someday will be I will, instead, live for today and make the very best of what I have been given.