Capture your grief - Day 21

Day 21 – Death (How do you believe our society in this day and age handles death? How can we normalize death and grief?)

I don’t know really. I have been very open during our whole journey and have, to my face, received nothing but support, but I know other people who don’t feel they can talk about it, others don’t even know they have lost their babies, and other people who have been told their babies weren’t really babies, whether because they left us to early, or because they were ‘born sleeping’. So I don’t know how our society handles death. Perhaps it’s easier not to talk about.

I mean, what happens when someone tells you they have lost a child/baby? Or even anyone? Things get awkward right? What do you say? What should you do now? Easier just to not talk about it.

What happens when 5 years after someone you know has lost a baby and they haven’t ‘finished grieving’ as you thought they should? Perhaps you think they should have done things differently. Perhaps you think they shouldn’t still be sad. Perhaps it’s easier to not talk about it.

How about when you ask someone how many children they have and they answer, “3. 1 in heaven and 2 on earth” and you think that wasn’t the right answer, and they just made it awkward. Perhaps it’s easier not to talk about it.

Maybe you don’t understand why someone is so sad about a miscarriage. Maybe you don’t know why they are so sad when they never even “met” their baby. Perhaps it’s easier not to talk about it.

Maybe you would do things differently if it was you, you can’t understand the decisions they made. Perhaps it’s easier not to talk about it.

How do we normalise death and grief? We TALK ABOUT IT! We are open about it and we are open minded when dealing with other people going through loss and grief, sure the may not do it how you would, but they are doing what is (generally) right for them. Talk about it, listen and accept that others do it differently and be there for them anyway!

Today I was talking to some wonderful people in my life about ‘holding space’. This is when you are willing to walk by another persons side in their journey without judgement, without trying to fix them or impact the decisions they make. You just walk with them, beside them. You support them to stand when they stumble.  You are a pillar to lean on and a grip for them to hold. So when they turn around, you are there, with an open heart, offering unconditional support. You listen to understand, not just to hear.

Although it may be awkward, although it may be different to how you would do it, to ‘normalise’ death and grieving, we need to talk about it, accept it and support it. We need to "hold space" for each other.

Capture your grief - Day 19

Day 19 – Learn (What is something that this grief experience has taught you?)

I guess the obvious would be about appreciating life, and while this certainly reminded me the preciousness of life, I think one of the bigger lessons for me was how good people are.

I never dreamed of the support we received. I knew our family would be there for us and would do everything within their power to help and support us, but it was other people. It was the meals we received, the people who came together to make afternoon tea for everyone after the funeral. It was people coming and visiting when we had Lily at our home, knowing there is a chance they wouldn’t even see us. It was the washing that was done without us even knowing there was washing to do. It was the people blowing up 250+ helium balloons the morning of the funeral, it was the full fridge, the jug always being hot. It was the movie tickets given to us to use “when we were ready”, the piece of music finished with her in mind. It was the offer to take photos, they are priceless, precious gifts (both of Lily and of her celebration). It was the painting of her, the photo book. The love, kindness and support, not only from our family and close friends but from other friends and even from people we didn’t even know.

From this experience, I learnt, and very strongly believe, people are good, and people want to be able to help and support, they may not know how to or what they can do, but most people want to. Perhaps it is also why I was so forgiving when people said things that hurt, because they were never meaning to hurt me, they said things with all the intentions of helping.

If you know someone in this situation, be assured that what you do to help and support, matters! Even if they can’t express it yet.

Also, one other thing I learned, is that facebook can be an incredible tool or resource. People used facebook to 'check in', to remind us they were thinking of us and Lily. And Facebook has given me the chance to share my story. And of course last year it was through the power of facebook, and again many, many people we don't know, that we were able to find the same outfit that Lily is buried in so we could have a memory bear made in the same outfit. We found the exact outfit, even in the same size, 6 years after it was in stores!

Capture your grief - Day 18

Day 18 – Joy (What are your thoughts on feeling joy and happiness after loss?)

This one is nice and simple. It took time, but ultimately, I know there is no one I love that I would want to see spending their lives sad or not feeling joy and happiness, so I know Lily wouldn’t want that for us. I don’t know if that sounds a cop out, but it’s true. But like I said, it took time. I guess it helped that we chose to spend Lily’s life celebrating and focusing on being happy with the gift we were given, the precious life we were given, even though it was short. Although it took time, I had a different outlook on life, one of those things that only ever happen to other people, happened to us, and we were reminded how precious and short life can be. Why would I spend the time I have unhappy? I never felt guilt at feeling happy. When the people I love are sad, it hurts. If Lily was watching, I wouldn’t want to be hurting her by choosing to not allow myself to be happy.  

Capture your grief - Day 17

Day 17 – Gratitude (is it really all it’s talked up to be when it come to healing? Is it something you practice?)

Heck yes! It is also an extremely hard thing to ‘decide’ to feel in the midst of grief. We chose from the start to focus on celebrating what we did have, to celebrate Lily for as long as we had her, rather than to spend her life dwelling on what we were going to lose. I had nothing to do with denial or anything, it was cherishing her, knowing she was a blessing to our lives.

After our Lily was gone, the pain was of course, real and extreme. That’s what love does. However, someone suggested I try to find something positive in each day, some days it was hard, sometimes the positive was “getting up”. Because some days the grief was overwhelming. But the simple act of thinking on positives, or things to be grateful for gave me the opportunity to refocus and whether it worked on not each day, it did always remind me that my pain was the result of having something that was so hard to say goodbye to. The pain was always worth it.

To this day, remembering what we lost, reminds me of what I had, what I have and the importance of valuing it today, of making the most of it, of being present with those I love and in how I choose to spend my time.

Capture your grief day 15 - Wave of Light

Capture your grief, Day 15 - Wave of light (Light a candle in memory of your child and become part of the most gorgeous day on the bereavement calendar.)

No words today, just a candle, lit in memory of our Lily xx

Capture your grief - Day 14

Day 14 - Connect (how do you connect with your child?)

In a heartbeat this song connects me.

We played this song as we walked Lily in to her funeral and, for me, this is why this song is meaningful...

From 20 weeks we had constant news thrown at us, half a heart, diaphragmatic hernia, compressed lungs, 6 toes... over and over again, we were told of all the things that were wrong with Lily. But in the end, no matter what was 'wrong', we believe, Lily was amazing, she was perfect. She was who she was and to change that would be to change who Lily is. (that makes sense in my head...)

Capture your Grief, day 13

Day 13 – Educate (what do you want others to know about your experience with grief?)

I could probably write forever on this. But I am ready for bed, so I’m going to keep it short…

Grief…

Grief is love with no where to go. It is all the love you want to, but cannot, give. That love pools in the corners of your eyes, it builds a lump in your throat and a thumping in your chest.

It is unpredictable, and it is surprising. It is never ending, and it is forever changing.

One day you are on top of it, the next it is fighting hard to get on top of you.

Grief is the result of a love so strong and deep it was hard to say goodbye, hard to lose.

Grief is intense and at times debilitating.

Grief looks like smiles mixed with tears. It is the onset of things like panic attacks that have no place in your predictable, calm day.

Grief doesn’t follow any rules or travel any set road.

Grief can lay dormant for a long time and come roaring to the surface when you least expect it.

Grief takes no notice of time of day, where you are, who you are with or what you are doing.

Grief is unpredictable and surprising. It is never ending and forever changing!

Capture your grief - day 12

Day 12 – Just Breathe (How do you cope when people say the wrong thing?)

This makes me think of the song Chasing Cars by Snow Patrol 

If I lay here

If I just lay here

Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

...

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

I need your grace
To remind me
To find my own

...

I don't know where
Confused about how as well
Just know that these things will never change for us at all

.... you get the idea. I don't know why it makes me think of that, I guess because what people need is literally just for someone to be there, not to 'make them feel better', but to forget the world with them.

Right from day one, I would rather someone say the wrong thing, than say nothing at all. Sometimes the wrong thing hurts, but I appreciated people making the effort to address the situation. (except the dr who said “At least you can have more….” When he was meant to be helping us!). People, generally, don’t mean to hurt you and I was able to see the good intention and appreciated it. And they don’t think what they say it hurtful.

There was one time that sticks in my mind for me, I was working during my pregnancy I was working (ECE teacher) and while I was open with the families about what was happening, I didn’t just randomly throw it into conversation, it was only if families asked questions. And there was one parent, nice person and we got along well, but obviously they didn’t know what was going on, and I can’t remember what we were talking about that lead to it but they said, “As long as it’s happy and healthy, that’s all that matters”, and I remember saying something like, “Well actually we have been told she only has half a heart, but we love her no matter what”. And it was hard to say, and I know it was hard to hear, but I thought, how many times will they kick them selves for saying things like that, if they find out later, I didn’t think that was fair on them. I hear a lot, even now, comments said like “as long as it’s healthy” to someone who is pregnant and I always think, actually that doesn’t matter either. If there is nothing you can do, what matters is that the baby is loved. And that matters even more if the baby’s life is going to be short!

I have had the “at least she is in heaven now”, and the, “At least you can have more children” and “at least she isn’t in pain” and more things that do hurt when people say them. Usually I will try to kindly say, “well actually, I would rather she was here in my arms”, or “actually, no other child can ever take her place”. But I don’t get angry or upset, because, ultimately, I am glad they tried. I am glad they were ‘brave’ enough to say something, even if they were feeling awkward.

If I was to try to give advice to people about what to say to someone who is losing or has lost a child, I would say, simply, if your comment starts with “At least……” don’t even say it, don’t even start to say it, and don’t try to reword it. This includes, “at least you have other children”, “at least you can have more”, “at least they are in heaven now”, etc, etc

Instead, try simply saying, “I’m sorry”, or even “It sucks” or simply, “I don’t know what to say”. But please, never, ever, say “at least….”

Please understand, there is no “at least” in loss.

Completely off topic - if you are reading this, thanks ☺ It's strange to write like this and not knowing who may read it. I have had a few people the last few days say, "I was reading your blog...." and I am always surprised! Hahaha I don't know who, or if anyone, reads this! Feel free to leave a comment telling me you did if you want 😉

Capture your Grief - Day 11

Capture your Grief - Day 11 - Tribute, Do you do anything to honour your child’s memory on special dates?

On Lily’s birthday we always have a family meal and it always involves cake! We get together with family and friends and we just spend time together. We have done a variety of things like letting off balloons, floating lanterns (decorated by family), sparklers etc. But ultimately it is a time to get together in her honour. Lily is never far from our minds and always in our hearts. She appears in conversations regularly so it isn’t even about ‘remembering’ her or her story. Her legacy is love and togetherness, and it is exactly what we do on her birthday.

At Christmas time each of our children get a new decoration to add to the tree each year, and that includes Lily.  

Other than that, we don’t have set things we do, but we do make sure she is included in our special times, our Christmas’, Easters, Birthdays etc.

Capture your Grief day 10

So day 10's 'topic' was to write a letter to the child you lost. But I can't do that. It is not really something you just sit down to do in a 10-20 minute window. Where would I begin? What would I even start to say.
So, instead I am going to post this link below. If you click on it, it will take you to the sound recording of Lily's funeral. I don't know if anyone wants to listen to it. But today, because I can't do what I am meant to, I will just post that link instead... maybe tomorrow I will be full of wisdom and interesting things to say! :D

I don't think I have actually listened to this since the day of her funeral. Maybe I will have a listen now too!

The celebration of Lily Tyne

💖

Capturing your grief - Day 9

Day 9 - Transformation

Has this experience changed me? Of course, hugely. I don’t know really how to explain just how this experienced has changed me but let’s see…

This experience quickly taught me the importance of people and to cherish them. This experience taught me all about a whole new kind of love. Lily is my first born. Before Lily I wasn’t a mum, but the moment I knew she existed a part of me was growing. I believe I had to make more hard decision about life, Lily’s and ours, in the 8ish short months she was with us, than many parents have to make throughout their lives as parents.  I learned what it meant to battle in your head and heart about the life altering decisions you have to make about someone elses life. I learned there was a love so strong it is there in an instant and it does not go away. I developed an understanding of the love my parents had for me. They may never have had to make life/death decisions for me, but I began to understand that, no matter what, their love was unfaltering. I became a mum and that is a pretty huge change to a person and I knew that no matter what, from that moment, I would be a mum for the rest of my life.

Through losing Lily, I came to appreciate time, other peoples and my own. I am open minded and try my best to be forgiving. But at the same time, I am not ready to waste my time on rubbish or things that leave me feeling like rubbish.

Ultimately I learned how strong I am even while I am extremely weak. I learned how strong love really is. And I learned what really matters. (I’ll give you a hint…. It’s people!)