Realising it’s not just Oscar’s Story

I first wrote about Oscar in February 2014, when I was 34 weeks pregnant. 

I looked something like this:

Although I didn’t mention his name at the time, he was Oscar at that point. He’d been Oscar for quite a while or rather “Planet Oscar” as he was referred to. 

This is the very first thing  I wrote: 

“At 34 weeks into my first pregnancy I have been encouraged to start a journal. Why? Because I’m carrying a baby, who has a heart condition that is incompatible with life. That means when he is born, at best, we will have just a few minutes to pour a lifetime of love into before our son passes away.”

I went on to add: 

We have had so many discussions about what we should do, and in the end we agreed that as long as our baby had a chance, that as long as he was able to fight for, we would fight right beside him. That we would love and protect him, that we would do everything for him that we could.

On 12th February we met with a surgeon who has nearly 20 years experience with our sons heart condition. He was willing to try surgery to save our son, but ultimately said that we would be looking at a “close to 0% chance” of our boy surviving. They could try open heart surgery for our son at birth, but in all likelihood he would either not survive the surgery or end up stuck on a ventilator. His entire life would likely be under anesthetic in an operating theater with strangers.

Or, there was an alternative. We could do something which I never imagined ever having to do. We could hold our son for whatever moments of life he may have. We could tell him how much we loved him and we could let him pass, surrounded by those who love him.

Something that I have thought about a lot is what counts as a good life? Could it be possible that it doesn’t really matter how long a life is, but how it is spent? What would I want if i had a choice? To be cut open and surgeons to try everything when my life was never going to be normal, or to spend that time in peace with those who love me? If those were my only options, I know which one I would choose. 

So, at some point in the next 6 weeks I will give birth, we will show our son all the love we can, and then we will have to let him go. When this will be we don’t know yet, but one thing I am sure of is that I will cherish every moment we have with our son until that point. That’s why I smile when he is kicking into my ribs constantly. Yes it may be a bit uncomfortable for me now, but it is a memory I will be able to hold on to  for a very long time.

As much as I am able to, I want to document this process. I want to record what I am thinking and feeling as well as what happens physically. I’ve been told that I may never want to re-read this, but that if I never write it I may one day wish I had. I suppose I could have written this in a private diary, but honestly? I want to share my son with the world. I want to share whatever short life he has with as many people as I can. That way, maybe in some way his memory will be able to live on longer?”

I don’t really remember who it was that said I may regret never writing anything. They would have been right though. As hard as it sometimes is for me to write this blog, to write about Oscar and to re-read it, I’m glad that I have it. I have a safe place where Oscar can be read about and remembered. I have a place where I don’t have to worry about little things being forgotten, because reading about them can jog a memory. And sometimes maybe even new people will read about him for the very first time. 

When I did re-read that first blog recently I was surprised at how many of the words I’ve repeated so often were in it: 

I will fight with him for as long as he is able.

I will show him all the love I can in whatever time he has. 

He will be surrounded by love. 

I will cherish every moment. 

I will write so that maybe his memory will live on longer. 

In a way I wonder now if these were some sort of rules that I’d subconsciously made up? If somehow writing that first post made me create those goals for Oscar’s life, or maybe I would have done them all anyway? It doesn’t matter which is true or if it’s some combination of both. What I was surprised by was seeing them written down and becoming aware that three and a half years later I still believe in them. That I don’t disagree or doubt anything I wrote in that first post. That I would still want to say the same things.

I’ve had doubts since Oscar died. I’ve wondered if we could have made different choices. I’ve wondered if we could have ever achieved a different outcome. I think that’s natural for any parent. To wonder if you could have made a different choice. To have dreams and wishes for your child’s future. What that first post is helping me realise is that even if I did have the chance to change my decisions, I probably wouldn’t. Yes, if Oscar could have lived of course I would have picked that. But, knowing that he couldn’t, I would never have changed the decisions we made at the time we made them. The operating theatre birth and then Oscar going straight to surgery (which I know now wouldn’t have worked because he also had that fatal lung condition) would not have given us that precious time that we did get with Oscar. If, and it’s a huge if, he had survived the surgery I would probably have met him properly for the first time with him being in PICU on a ventilator. At birth, I would have had maybe a second to look at him. Instead I had hours to hold him, completely unrestricted by any tubes or wires. Nope, I wouldn’t have given that up for anything! 

Instead this was one of the first views I got of my son: 

As so often happens when I write, I get a little off track. I had this whole plan in my head for this post, and it hasn’t really turned out like that. Still, it’s kind of fitting since Oscar wasn’t a big fan of following the plan either. 

What I actually planned to write more about was me, Oscar’s Mummy. This blog is Oscar’s Story, it’s supposed to be about him. I made him, I carried him and now I’m telling his story. I have that responsibility to ensure that he is always remembered. But, something which I’m realising more lately is that it’s also my story. It’s told completely from my own biased perspective as Oscar’s Mummy. Now for someone who doesn’t like being the centre of attention and actually struggles in social situations that’s kind of scary. I kid myself that this blog is anonymous, but people who know me read it, so it isn’t really. This is probably the reason I have so many half finished blog posts, things that I would love to write about but can’t quite bring myself to finish and hit publish on. 

You see; as much as Oscar’s Story is about Oscar, my amazing baby boy who defied all the odds and gave us far more time than we dared imagine (bet your glad I didn’t go for that on his birth certificate!) it also needs to be about what comes after Oscar. About how on earth you survive after loosing your only child. On how you figure out how to move on after you hold your baby when he takes his last breath. And honestly, three years on, that’s something I’m still not completely sure of the answer to. Even now I’m still working on living and not just surviving. On figuring out how to live in this new reality. The reality where the person you care about most isn’t here. Where they never will be.

The number of untold stories about Oscar are running out, I am running out of unseen photos of him and I’m slowly realising that I need to figure out how to move Oscar’s Story forward. And in doing that, it’s about how I, as Oscar’s Mummy am moving on with only memories of him. I need to finish and publish all those half started posts, because stories and thoughts about life after Oscar are just as much a part of his story as the 23 days in which he lived. 

They are the Story which needs to be told next. Because loss will always happen, because there is no cure for CHD’s, because babies and children will always die and because parents will need to find ways to move on. Because as much as I hoped Oscar’s Story would support parents who discover that their (unborn) baby has a life limiting illness, it should also support the parents afterwards. Because for every heartbreaking loss of a child,  there are the parents that have to survive it.