Eight

Below is a story you may know, that you may have heard or read before; this is the story I wrote in 2014 for Oscar’s funeral (with a few tweaks.)

Oscar’s whole life is recorded in a blog (or technically two, but the first I’m the only one who can now see) and while it isn’t anywhere close to having him here, it is maybe somewhere that he continues to exist.

Yesterday was the 8th anniversary of his death; there wasn’t a post. Instead, today I have this;

Oscar’s Story begins in 2013 when at around 16 weeks pregnant I found out that he had a heart condition.

From that time forward Oscar had many ultrasounds, and I like to think that during those scans was when I first started to see my son’s personality. If the ultrasound probe was held near his head, he would cover his face with his hands, and if they then moved to his feet, he would try to kick it away. He would often be in the perfect position for his heart to be scanned, and would then roll over before it could be completed. It seemed clear from that point that Oscar was in charge.
Oscar’s heart condition didn’t have a cure, just a series of risky operations to essentially re-plumb his heart in order to give him more time. I always thought that as long as he had a realistic chance I would take it. Really, the only long term goal I had was to meet my son, and to put a face to the kicks and hiccups.
In February I was given the news that he had a “close to 0% chance of surviving” and that if I was lucky he might survive a couple of hours. I decided to have him at the local hospital, to give him the best chance of being able to meet his family during his lifetime.
Oscar Barnaby was born on April 1st at 5:25am, 8 days overdue, screaming and alert. Given that I always thought he would be born prematurely, I never considered that as a potential due date, but had I thought about it, I would have realised that he was never going to pick any other day.

Oscar spent his first 36 hours of life at the local hospital. He was held by someone practically the entire time, and also had to endure cameras and phones in his face almost constantly. Luckily he didn’t seem to mind. While it was an amazing time, I think everyone was very aware that it could end at any moment. I say everyone but Oscar had other ideas, which included a ride in an ambulance and a stay at the specialist hospital.
On the evening of April 2nd Oscar was transferred to the specialist hospital, as everyone was amazed that he was still with us and doing better than expected.
Tests at the specialist hospital didn’t change his diagnosis, but given the strength Oscar had already shown it was decided we had to give that impossible operation a try. Just maybe I would get to spend some more time with him. What they completed of the operation was essentially a success, but his lung condition (a side effect of his heart condition) meant that he just couldn’t cope off the ventilator.

Oscar spent the remaining 22 days of his life at the specialist hospital. Yes, the operation and other medical procedures resulted in his spending almost all of that time connected to so many tubes and wires, but honestly it wasn’t a totally sad time – after all, every moment I spent with Oscar was a moment I never imagined I would have. The staff at the hospital were a huge part of enabling me to make positive memories, creating a diary for Oscar, taking photos and letting me have cuddles – which given the number of tubes and wires to which he needed to stay connected, needed something like a military operation to achieve.
Oscar’s personality was pretty evident from the start – not only was he determined and a fighter, but he was also nosy and very good at expressing his opinion.
If he heard a noise, his head and eyes would turn in that direction. I realise that pretty much everyone was a blurry blob to him, but he seemed to figure out who the doctors were at the specialist hospital pretty quickly. He would use almost any doctor’s approach as a signal to start pouting and frowning. With being on the ventilator he couldn’t make a sound, but one look at his face told you he when he was protesting…and from his first night at the specialist hospital, I was aware of how loud that protest would be if he were able.
Oscar loved his forehead, chin, cheeks and hands to be stroked. I am sure he figured out at some point that if he frowned, and I saw it, I would start stroking his forehead since that frown seemed to appear far more than necessary, and disappear very quickly once he was getting some attention.

Oscar had two things that seemed to be his favourites. The first was the heater above his bed. It was a shiny metallic thing, which he seemed fascinated by. He would stare up and move his head from side to side, presumably because it made the reflections he was seeing move. I bought him a mobile to hang from it, but I am pretty sure he preferred the heater.
His second favourite thing was a yellow duck comforter or blanket, which every baby who has surgery at the specialist hospital was given when they came back from theatre. Oscar’s yellow duck spent a lot of time on his head. He hated hats, and if one was put on him he would move his head from side to side to try to get it off, but put that yellow duck on his head and he was so content. Clearly he knew something about fashion that the rest of us don’t – after all, at one point he also made a paper towel on his head look pretty stylish.

I had a lot of comments about Oscar being very expressive, and that was true. He had a facial expression for everything. When he was being fed his milk through a tube, he decided that he needed to chew along, and when the nurses came to check anything, his eyes would follow them with a look of suspicion as they moved around his bed.
Oscar could probably also be described as stubborn, and as having his own ideas about how things should be done. I thought I knew how things would go after he was born, but Oscar surprised everyone with his alternative plans. Very little happened as expected – instead my little boy did things in what I will forever think of as “Oscar’s way.”
And, you know what? Oscar’s way often turned out to be so much better.

I could go on for hours about Oscar. I spent around 12 hours at his bedside every day, and in that time I really got to know him. He was his own little character and with those huge dark eyes he could charm anyone. When you are told that you will have a few minutes or maybe an hour or two, I cannot describe what it is like to have been given not just that time, but days, and then weeks longer. No matter how hard losing him has been, and as much as I wished I could have kept him, I will be forever grateful that I got longer than anyone said I would and that I got time to create memories that will last forever. As much as the medical interventions he received were a huge part of getting that time, Oscar’s fight and determination must have played a part as well.

Some people never really make an impact in their lives; Oscar lived for 23 days and had people all around the world thinking about him, praying for him and talking about him. I have no doubt he will always be remembered. He was my baby grumpy face, my baby Superman and my little miracle. He will always be a huge part of my life.

A year to the day after Oscar died I wrote him a letter; it’s edited a little but I’ve posted it below:

Dear Oscar,

24 days in April 2014? Those 24 days are your story, baby boy. They mark each day of your life, 24 days more than I ever thought I would have. 24 days in which you, my little amazing one, fought with everything you had. You gave your family time to hold and love you, to make amazing memories and to learn all about Oscar’s way.

You knew how special you were didn’t you? You recognised that sobbing mess at your bedside as your mother? You knew that all those tears were for you. Because, having met you and fallen in love with you, I knew that losing you was going to break my heart. Every one of those tears was because I loved you more than I ever knew it was possible to love. I hoped you felt loved and safe and protected. I hope that the pain you must have felt was worth it. I will never regret the chances taken to spend as much time as you had with you. I hope that if you had the choice you would have chosen to be with me. I hope you would have wanted to be given the chance to live.

I miss you so much Oscar. I don’t think that feeling will ever fade.
I miss your eyes baby boy; I miss the way you would stare at me and the way you would frown. You didn’t need words or even a voice to cry…your eyes said it all.
I miss seeing you with that duck comforter on your head. I will miss seeing you moving you head back and forth looking at the heater above your bed. I will miss stroking your face to calm you. I will miss seeing you reach for your tubes and wires with your hands. I will miss every single thing about you, for every single day that I live. You were uniquely you and so special. You were the tiny baby with the biggest personality.

I wish there was some way you could have stayed. I wish I could have raised you and watched you grow. You were amazing. I’m sure you would have continued to be amazing. I hope you know how special you will always be. How you will always be a part of me; perhaps the very best part. I will love you forever and there will never be a day go by when I don’t think of you.
You are not replaceable, nor would I ever think to try. There could only be one you Oscar. You. The very best there ever could be.

I don’t think I will ever truly appreciate how much I gained from having you in my life. My life has been forever changed because you were in it. I will never understand why I deserved you. Why I got to be your Mummy. Why I was the one chosen to receive you, the most perfect gift. I will be forever grateful that I was though. I am so proud of you. I am so proud to be your Mother.

Thank you for fighting Oscar. Thank you for staying for longer than we imagined. Thank you for so many memories. Thank you for being my Son and my beautiful Oscar and now forever our

my little shining star.

I love you

Mummy

2015 me said everything I would have said today, even knowing all I do now I’d still go back and do it all again. The pain and hurt will always be worth having Oscar even if only for April 2014.