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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29 thoughts on “R.E.S.P.I.T.E. Find out What it Means to Me

  1. Jax Mully

    This is something I’m really struggling with lately. I just feel tired. I need a break. Being a SAHM is the best decision I ever made, but it’s also the hardest job I’ve ever done. It’s 24/7, no weekends or evenings off here! Luckily, my husband is awesome and he often gives me time away to play volleyball or take a walk around the park. But, it’s still exhausting! Thanks for putting things into perspective!

    Reply
    1. mrboosmum Post author

      I so know what you mean about hardest job. I recently (and with some reluctance returned to work) although flexibly to accommodate Mr Boo’s needs and honestly, work feels like a rest even though there’s a lot of it. Colleagues were complaining about workloads and how tired they were the other day and I really had to bite my tongue to stop myself saying ‘You think this is hard work? Let me tell you about hard work.’ That’s unfair, of course. But it’s also true.

      I’m glad you get some time to yourself. It makes such a difference.

      Reply
  2. Erica Price

    Sounds like you really needed and deserved this break. Sometimes for me respite is just finding a few moments to enjoy. Yesterday I worked hard: shopping in the morning, gardening in the afternoon. Then at about 4pm I thought I’m just going to enjoy the garden for a bit and that was really wonderful.

    Reply
    1. mrboosmum Post author

      Thanks for reading and commenting. I don’t think I knew how much I needed the break until I got it. I was away 2 nights (shortest possible time as I was headed so far away) and it was exhausting but energising all at the same time.

      Reply
  3. AutismMumma

    Great post, I’m so in agreement.
    Well done you for getting that respite time. It’s so important to grab a little “you” time.
    Mine is a costa coffee before the pm school run a couple of times a week.
    We’ve been offered overnight but I haven’t taken it up yet, I will in the future.

    Reply
    1. mrboosmum Post author

      Thanks for the lovely comment. You’re so right. I think one of the many reasons I’ve been so rubbish at getting me time is thinking it had to be something huge or dramatic like a night away. But it doesn’t Five minutes in Costas counts and makes a difference. Glad to have met you!

      Reply
  4. pinkoddy

    What a great post. I am glad you managed to get a break – and how clever what you did with the letters. I’m really lucky in that I tends to get a break most weeks at the end of the week, where my husband takes over, and he is very good at doing the nights.

    Reply
    1. mrboosmum Post author

      Thanks so much for reading and commenting. Help at nights makes a big difference doesn’t it? Even so, we all deserve a little me time. I am so rubbish at makin this happen but I believe everything I say in the post and am trying to make more time for this.

      Reply
  5. Mummy Wife Woman

    This is an amazing post. Its lovely that you got the break you needed and DESERVED!! as a mum of a prem with associated difficulties i know how much the R.E.S.P.I.T.E means to you! I can relate to so much of it. Good luck with returning to work. xx

    Reply
    1. mrboosmum Post author

      Thank you. I’m still not very good at incorporating this stuff into daily life but I think I do understand the importance of a bit of a break and I refuse to feel bad about it now! I hope you get your respite, too, in whatever form you want it!

      Reply
  6. Mummy Zen

    Great post! I think you’re right that even a few minutes here and there can make a big difference – like your examples of drinking a hot cup of tea, having a few moments of quiet to yourself; small things that are actually a big deal in the grand scheme of things. Such a lovely read and glad you are realising the importance of R.E.S.P.I.T.E even if putting it into practice is not so easy (we can all relate to that!).

    Reply
    1. mrboosmum Post author

      Yes the putting into practice is hard but I’m hoping the hardest bit is persuading yourself it’s important. If so, first hurdle overcome.

      Reply
    1. mrboosmum Post author

      Thanks so much for the lovely comment. Yes, the doing something about it is hard and I know that there are lots of things I should have done (like more haircuts) that I haven’t because I haven’t made space for that kind of stuff. But hopefully I’m getting better at it. I realise how important it is if I am going to be able to help my kids to the best of my ability.

      Reply
  7. http://specialkidspecialparent.ca

    Great post! I wrote about having time away this week too. I never knew how much I needed a break until I got one 🙂 Having a break made me realize that I need to make more time for me, whether I go for a walk, take a class, or do something alone.

    Reply
  8. Sylvia

    I have a friend whose son just went through Infantile spasms and the nasty side effects of ACTH. It must have been really hard for you to leave but I’m glad you got the chance to step back, breathe, and enjoy yourself. You describe respite expertly!

    Reply
    1. mrboosmum Post author

      Thank you for reading and commenting. I’ve just found your blog, too, and am so enjoying getting to know your wonderful family. Infantile spasms are just brutal, I must say. I do hope your friend’s son is doing well!

      Reply
  9. h0pefulmummy

    what a wonderful insightful post. R.E.S.P.I.T.E. is important to any mummy, child with special needs or not, taking the time to realise that we are more than a mummy makes us appreciate our life and our families so much more. we are now 3 years down the line, living with a child who is a wheelchair user and totally dependent on us, we are struggling to get formal respite but once every other month we book into a premier inn and my mum looks after our girls and those 24 hours with my husband just being together is invaluable!
    thank you for your great post

    Reply
    1. mrboosmum Post author

      It’s great to meet with you on the blog! I’m so glad you get some respite, although it makes me sad when I hear (all too often) about families that would clearly benefit from formal respite but have to struggle to get it. It makes us all stronger, I think, as you say. Hope your little one is doing well and that we can chat again!

      Reply
  10. Mumof2

    It’s so important for the carer to have some care for themselves! Whether it’s looking after children or elderly parents – you need some time to recharge in all aspects. So glad you got to do that and hopefully it won’t be too long before you can do it again. x

    Reply
    1. mrboosmum Post author

      Thank you so much and sorry for the delay in replying. We’ve been on holiday. I still need to work on finding little bits of respite in the day to day, I think. It’s so important, as you say!

      Reply
  11. sarahmo3w

    What a beautiful post. So good that you have realised how important a break is. There is nothing selfish about it – it is essential for your own health and wellbeing. And if you are to carry on being the best possible mum to your children, you have to consider your own health and wellbeing. Glad you had such an amazing time.

    Reply
    1. mrboosmum Post author

      Thank you for your lovely comment. Just been away for two weeks, hence the delay in replying.

      Yes, we need to look after ourselves to be able to look after others. If can be hard but it’s vital. I am going to keep re-reading your comment and my response to remind myself of that!

      Reply
    1. mrboosmum Post author

      Thank you. It’s one of those things I know to be true, but still find hard to put into practice. I get the feeling you know what I’m talking about. 😉

      Reply
  12. mrboosmum Post author

    Reblogged this on Premmeditations and commented:

    For #ThrowbackThursday a post about an important topic that’s still a work in progress here. Do you get any respite? What form does it take? What does it do for you and those you care for?

    Reply
  13. lookingforbluesky

    Brilliant post, you’ve summed it up so well. I guess for me respite is a chance to step off the treadmill for a night: there is very little flexibility in our routine here, as meals, toiletting, bed time etc all have to happen at certain times. And even though she is the happiest and most loving 17 year old in the entire world (I may be a bit biased) caring for her is exhausting xx

    Reply

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