Tag Archives: cereral palsy

R.E.S.P.I.T.E. Find out What it Means to Me

Things have been changing pretty fast in Boo Land lately. After a year of never leaving Mr Boo for more than 2 hours at at time, and then only about three times since his birth, a year of doing every school run for Sissyboo, of spending every waking moment thinking about them and worrying about what I’d forgotten to worry about, suddenly I had an opportunity to think about myself.

I went away. For a weekend. With my sister. To our cousin’s wedding. In NYC. Yeah baby!

I was all set to book my ticket at Christmas when Mr Boo developed Infantile Spasms. I felt like our world, already devastated by the earthquake of prematurity and aftershock of cerebral palsy, was now about to disappear beneath the tsunami of epilepsy.

This was no natural disaster, though. There was nothing natural about this. It was wrong. It will always feel this way to me, I think. The only thing that could have been more wrong was for me to abandon the Boos just for fun. How could I have contemplated it?

But Mr Boo got better. The seizures got under control. He started (eventually) to get over the worst side effects of the miraculous yet dreadful steroids. And boy did I need a break.

I had been up with Mr Boo for every single one of the 100s of times he’d woken in the night since birth. I’d done physio with him at least twice a day for 9 months. I’d attended around 150 medical appointments (who’s counting?). I’d had (still have had) one haircut since he was born and regularly missed (miss) showers and meals. I needed some time out, however selfish that sounded and still sounds to me. So I took a deep breath (I regularly forget to do that too) and booked our airfares.

My sister said she wasn’t convinced I’d get there until I got on US soil and was past the parachuting out of the plane window. But I did get there and had an amazing weekend with my sister and family. It wasn’t easy (note to self: never watch The Impossible again – familial separation not good for mum with NICU-induced PTSD), but everyone back home was fine.

The Grumposaur did a great job, as I knew he would, looking after the Boos, and I came back refreshed. Just as well as I had to go back to work after over a year away the day after I got back.

Since then I’ve been thinking about respite of various kinds and how vital it is for families like ours. It doesn’t have to be a weekend away. It could be a walk on your own, a hair cut, time with your partner, or even just 5 minutes to drink a hot drink in peace, while it’s still hot. I am rubbish at making these things happen, but I now understand how important they are.

So here it is: what R.E.S.P.I.T.E. means to me.

R is for recharging your batteries. Every self-help book and magazine tells you how important this is. I’ve always been sceptical, though. But it’s true. No matter how busy you are when you’re away (and we were busy) it’s amazing how energising being busy in a way that’s different from your daily grind can be. Even with jet lag, I came back feeling like I could run a marathon.

E is for easy breathing. It took 24 hours, but once I knew everyone was OK and I couldn’t turn back I noticed my shoulders slipping down a bit, the headache I’ve had almost permanently for a year went and I remembered to breathe without reminding myself to do it. I felt like someone had cleaned out my lungs with a bottle brush.

S is for sleep. No glossing required.

P is for peace. Gosh I like silence. I used to spend big chunks of my working life in complete quiet, thinking, writing, getting irritated when people had the audacity to so much as sniff. Now life is noisy. Full of chatter, laughter and tears. A few moments of absolute quiet is amazingly restorative.

I is for I am still an I and not just a we, an us, a partner, a mum and a carer. I am still me. I am worth remembering from time to time.

T is for taking stock. Sometimes it’s so hard to remember how good life is until you stand back from it. I try to do this on a regular basis. It’s why I started Good News Friday on the blog. But I got a much better handle on all of this from 3500 miles away. I am a lucky lady. Sometimes I don’t think about things that way. I lack perspective.

E is for the excitement of coming back. Of holding them tight. That’s really what going away is all about, isn’t it? Returning home. To the things that matter most.

I’d love to know what does respite mean to you…

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