April 19th 2014 was Easter Sunday. As Oscar was due at the end of March, I never imagined he would still be with us at Easter. I think of Easter now, a little bit, as Oscar’s holiday. I will always be grateful that we got to spend one holiday in the year with Oscar. Oscar got chocolate for Easter of course:
No-one told him he wasn’t allowed to eat it though!
The nurse who worked the night of Saturday/Sunday wrote one of my favourite entries in Oscar’s diary:
Easter Sunday was all about giving Oscar time to rest. The removal (and re-insertion) of Oscar’s ventilator had taken a lot out of him, and left him weaker than he had been. Over night Oscar had been passing more urine, and he was a little less puffy and fluid overloaded. His temperature also wasn’t as raised.
The photo on the left above is from the 18th, and the one on the right is from the 19th. The difference between the two is quite easy to see.
On the 19th we weren’t sure what the plan for moving forward was. We were realising that since he had failed to come off the ventilator we were probably running out of options (and time.) We saw many other families come and go during our PICU stay, most moving to the lower dependency wards (and then, I’m assuming being discharged.) At this point I realised that Oscar still being in the PICU wasn’t a good thing. By now, we should have seen some improvement and he should have been well enough to have been moved to the ward. Oscars condition wasn’t actually improving. All we were getting was more time with him, which was more than we ever expected we would get, so while bittersweet, wasn’t a bad thing.
From before Oscar was even born, I knew that his life was going to be very limited. I thought the best case scenario would be a few minutes with him. That every second of time would be precious. I was right about each second being precious; I was wrong about how many seconds we would have.
Oscar lived through multiple sunsets, he lived through rain and and sunshine, through night and day. Of course, he wasn’t actually aware of any of that. I was. I knew that time was passing. That we had been given far more time than we were supposed to have and I knew on April 19th that it was probably running out.
Part of me wonders, when we knew time was running out, should we have done something special? Should I have read him stories, should I have bought him gifts, sung him songs? I didn’t do any of that. I just sat with him. I spent time with him. Maybe that was as much as he needed? The stories and songs would have been nice memories for me, but maybe it’s actually better not to have that association? Every time I hear the song from his funeral, I just hope that I am strong enough not to cry. Imagine if I’d actually sung to him. If I’d read him a story. I don’t know that I’d ever be able to go near them again. Also, I can’t actually sing; what I’d actually have done was put on my iPod for him! (I did consider this at one point; I was sick of “twinkle twinkle” on the baby music box…not sure PICU would have appreciated musical theatre instead though!)
As it is, I am content with how I chose to spend time with Oscar. Sitting beside him, giving him a running commentary of what was happening around him and holding his hand. All Oscar really needed was someone to hold his hand. Someone to love him, to stroke his hand,forehead and chin and maybe a duck comforter on his head and his shiny heater friend above his bed.
And I imagine Oscar’s favourite way to spend any day was seeing how long he could get away with touching wires and tubes before he was redirected:
The answer to that, of course, being far longer than he should have, and at least until after I’d taken a picture! I think those eyes meant Oscar could have gotten away with anything! He certainly had me wrapped around his little finger!
I never read Oscar a story and I never sang to him once he was born. While he was in my belly though? Well, we watched “Oz, the great and powerful” and went to see “Thriller: live”…I don’t think any of my stories or singing would have lived up to that!