Written Two years ago:
Something which makes it hard for me to write these posts is knowing what is coming next. I know, writing this now, that April 21st was our last “good” day with Oscar. Last year on this day though, I didn’t know that. We always knew Oscar’s life would be very short, but as the days went by in the PICU, although Oscar wasn’t improving, I began to feel like we were safe. We were stuck in our own little bubble, and we had this routine to our days that just seemed so natural. The fact that we couldn’t go on like this indefinitely seemed to get pushed to the back of my mind a little. A small part of me was perhaps always hoping for that miracle. Hoping that maybe someone would say his diagnosis had been wrong, or that there was some other operation that they hadn’t tried.
On April 21st we had another surprise. The night nurse had dressed Oscar in a babygro. This was the first time in the PICU that he had worn clothes, and something which we assumed wasn’t actually an option due to the tubes and wires. All day, doctors and nurses had to undo that babygro to change dressings, check wounds, change medication lines and examine Oscar. Everything took longer to do, but I didn’t hear one person complain about that. It was such a simple thing, but the fact that Oscar got to spend one day wearing clothes in the PICU meant so much to me.
The babygro was a little big and Oscar kept loosing his hands up his sleeves…it did at least stop him from pulling at his medication tubes though!
Note in the picture above that his NG tube is stuck on the opposite side of his face than usual. The nurses had given up on trying to keep it stuck on the right hand side!
Also, note Oscar hand…the angles of his thumb and index finger just seem impossible!
April 21st was also the day Oscar wore a hat without complaint! We snuck it on slowly while he was asleep, and once he woke up he did keep it on for a short while. I wonder if it was just to keep his Grandad (the Sunderland supporter) happy?
I’ve maybe left it a little late to explain, but the majority of each one of my daily posts I wrote in 2015. Basically that’s anything I’m posting in italics. Anything in normal font, is something I’ve written in 2017.
A little secret is that I’m rereading all of the 2015 posts days before they actually happened. Even though I know Oscar’s Story by heart, it still affects me to read it. It takes me a little time to process, and then feel able to edit and repost it. It also takes time for me to be able to see the screen without the blur of tears (and I’m ok with that. I learned a long time ago that tears aren’t necessarily a negative thing, and that feeling and expressing pain is also ok.)
That means that as I’m writing this I’ve already read the 24th April post. I’ve started planning the additions I’m going to make and I’ve started editing the photos. This is a little weird in that while I’m still writing about the positive moments here, I’m planning the writing about the negative. In a way, that’s how Oscar’s Story is in my head anyway. I don’t remember what happened on specific days, just a large jumble of fragements; some positive and some not so positive.
I always struggle with what happens after the 24th. I’ve spent a large portion of time writing and thinking about Oscar over the last few weeks, and then suddenly his story ends on April 24th. They are no new photos of him and no new stories to tell. In a way that’s similar to his life; while we knew it would be short and while we knew the end was coming, it was still such a shock when it happened. Suddenly, we didn’t have daily hospital visits, we didn’t have hours sitting with Oscar, we had to figure out what came next. This year I’m hoping to share some of that story. Of what happens after your baby dies, what do you do then? Both the practical side and maybe some of how I coped with it emotionally. Because, that’s all part of Oscar’s Story as well.
Anyway, I’m getting ahead of myself a little, there are still a few days of Oscar memories left yet.