I’ve held you in my arms for 6 hours today to keep your tears at bay, whilst also laughing so hard the tears have rolled down my face. It’s been a weird one kiddo.
Today, yesterday, Thursday were hard days. I don’t overly expect tomorrow to be much less hard but I live in hope. Sending Xavier off for his operation on Thursday is hard – that kid certainly goes down fighting!! Who wants to see them that upset just before they go to sleep and get taken away?? Waiting for news then waiting to go to recovery to collect him is always hard – what did they do? Is he OK? Can this really be the one??
For brief moments in those hours you can find some sanity, normality. *Sleep deprivation helps bizarrely because your brain is too exhausted to over work itself but of course the phone is never out of view and the panic is a taste in your mouth.
Thursday night neither me or Xavier slept (we managed to get Ronald MacDonald accommodation for Tony so at least someone was sane Saturday) with our poor son managing 40 minute intervals of sleep then 20 minutes of crying.
Friday they worked hard to get his pain meds correct but it’s not that easy with a non verbal child – his “angry at the world cry” and “in pain” cry are heartbreakingly similar. Once the epidural was out he could come into my arms and he finally slept (I might have napped too – holding him makes all the tension go away which makes me sleepy). He slept on and off in his cot that night through SATS checks and was still exhausted Saturday morning.
As soon as he clocked his comfy, squidgy momma was about, it was the only place he wanted to be. Through numb bum and tingling hands we sat in the chair and he slept. His SATS improved, his temperature improved and he slept.
The pain in my bum reminded me of those first times we held him. The nurses would tell me to say when I wanted to hand him back (it took two of them to transfer him and his ventilator into mine or Tony’s arms) and I would sit there until I lost sensation in my lower body, too scared to move even a little, reassuring the nurses that I didn’t want to hand him over. It was normally a bursting bladder that defeated me.
Today , with intervals for doctor checks and a toilet break, he managed about 6 hours sleep, every time I moved he would cry until I settled still again. Every tine he went down for the doctors he screamed. We’ve worried over SATS and temperature and all the usual post operative worries but we’ve also weirdly had a lovely day.
The nurses here are like friends – we know how to laugh with them and yet enable them to do their jobs. We reminisced about a bogey names after one of our favourite nurses, giggled over misheard lyrics on TV, chilled to my reading aloud of Beowulf to Xavier whilst he slept. I do t even know half of what we laughed about in that way you do with people who like so much.
I think it’s weird for some parents to see us in such high spirits when the baby cries everytime he’s put down or poked by a doctor, and there’s o2 pipes and lines for his pain meds and an intermittently beeping monitor. It certainly garnered some weird looks when he was in an incubator from birth!!
For me, it’s important he can hear that laughter. Even from those first days when we were told Xavier might die, we laughed as much as we could. I made up crazy versions of nursery rhymes to make Dad laugh, and the nurses who would loiter to hear the end! If he couldn’t stay with us I wanted to know his short life was filled with laughter. I wanted him to think “geez they sound fun, I should stick around!” I wanted him to know he brought us joy.
Even now I want Xavier to know that beyond all that pain is a world full of laughter and love. I’m not laughing at his suffering, I’m sitting in a hard chair for 6 hours to make his life as comfortable as possible and thus wiggling only to regain sensation. We are however filling the world around him with as much happiness as we can to bring him back to us.
For us too, the laughter is important. The tears and grown up chats are too of course, but we spend so much time here we need to find a way to be happy too. We need to trust AND like these people who are responsible for his life, and laughter bonds. Whether it’s the nurse declaring they don’t want a bogey named after them or our nurse taking ages to inspect the vomit on my arm instead of letting me wipe it off (funnier than it sounds to a seasoned vomit target), they’re moments that mean something to us, private jokes shared between people with genuine regard for one another. They’re the stories I can tell our son rather than just stories of pain
I wouldn’t say Tony and I share a sense of humour – he likes Harry Hill after all – but we laugh a lot together, normally over nonsense. That’s what made me fall for him initially and it’s what got us through months of fear and worry. Finding the amusing amongst the mundane and scary is like taking the lid off the shaken pop bottle – all the pressure overflows and is set free. It takes the top off the pain and panic and allows our brain respite from that “what if?” Sleep deprivation also makes me slightly hysterical so a lot more things are funny in hospital!!
Except Beowulf. I’m reading that out to Xavier at the moment and it’s definitely not funny…
Today I held my baby boy (is he still that at 12 kg and 18 months?? Of course he is, he always will be!) to stop him crying. He vomited over me twice and there’s been lots of concerns but I’d do it all again tomorrow if necessary, the laughter has kept me going, enabled me to find my strength.
What I want him to remember about hospitals is that if we’re together, we can be happy. In pain, miserable, grumpy is all part of being here unfortunately but together – as a team, we can get through it and find the happiness.