Tag Archives: respite

The hardest juggling act of all

And for my next trick…

Yep: like all parents, I spend a lot of time juggling. Heck, I spend a lot of time blogging about juggling. And guilt. Let’s not forget the guilt. And of course, these things are intimately related. A huge chunk of the knotty mass of guilt I feel on a pretty much daily basis originates in my feeling that I am a poor juggler. That I don’t get the balance right in my respective responsibilities as Mum, carer, advocate for Boo, partner, employee, and colleague. That I let people down on a regular basis, including myself, but especially my kids.

If you read this blog regularly, you would be forgive for thinking that the hardest circle to square is the working mum/parent-carer one. I wrestle with it daily and the moment it is pretty all consuming. But it’s not the hardest juggle of all. Not by a long way.

The hardest is being Mum to two children, one of whom has extreme and complex additional needs and one who does not.

Sissyboo is just about the best sister anyone could have. Boo is incredibly (there just isn’t a word hyperbolic enough to describe this) lucky to have her in his life. I watch their relationship develop with intense pride and amazement. Her life was as much turned upside down by Boo’s early arrival and all that came with it as anyone else’s and all of this happened in the year she started school.

Cerebral palsy doesn’t faze her. In fact, she is very knowledgeable about it. She has started to question the world around her, the policies and prejudices that affect her little brother’s life. She instinctively, now, notes the accessibility (of often otherwise) of places we visit and clocks lifts and accessible toilets sometimes before I do on trips out. She has the best stare for non-blue badge holders who park in disabled parking spaces because they are in a hurry that I have ever seen. She helps with Boo’s therapies. She makes him sticker charts and buys him presents with her pocket money entirely off her own bat if he hits a new inchstone. She reads to him and plays with him. She forgives him if his wayward arms whack her round the face accidentally or if he pulls her hair.

And mostly, she just loves him. Unconditionally. As I do her.

She may not realise it at the moment, but she has given up a lot for him. Time with me, days out, days without worry. And I worry so much about her missing out.

You see, Boo’s needs will always be the most immediate. He can’t do a thing (except watch TV) without adult support. And she is nearly seven. So when it comes to the two hours before bed what do I do? Shoehorn in as much therapy as possible for Boo? Goodness knows he needs it. And then what to do when Sissyboo asks me to do Hama beads with her? What about when she needs help with her homework and he is screaming because he is uncomfortable and needs stretching or otherwise stimulating because he can’t just get up and walk to the toys he wants to play with.

Sissyboo does after school clubs most days. This is partly because I work, but it is also so I can fit a bit more therapy time into Boo’s day as he doesn’t get enough 1:1 support at nursery. And I don’t feel good about paying someone else to look after my daughter so I can do therapy with my son. Not at all.

Nor do I feel totally OK with all days out having to be geared up around her brother’s needs. Of course, I want him to be as happy as possible and like to be prepared wherever we go, but I hate, for her sake, that so many days out turn out to be about what we can and can’t do with Boo. The only way to avoid this is to split our family of 4 into 2 families of 2, not always practical, and not at all what any of us wants.

We used to have a volunteer from the wonderful Homestart come and help us out for 2 hours a week. Boo was well looked after and I had 2 hours a week with my lovely girl. We used to do crafts or make cakes or watch a movie. That ended 10 months ago now and we both still miss it enormously. I try to take her swimming on my own once a week (like I take her brother on his own once a week too, although she has to come watch). I let her stay up a bit late on Fridays and Saturdays and help me make dinner and do crafts. I plan odd days out with just her. These are so much fun.

But I’m still not used to this. I wish I could get the balance right. I wish I could be sure I was doing enough to support her through school and just being nearly 7. But I can’t. When push comes to shove, Boo often has to come first. He can’t help it. It’s just the way it is. I just hope she grows up not minding. I hope she grows up knowing how amazing she is and how very, very proud I am of her.

If you have any tips on how to juggle the needs of siblings with different needs, I would love to hear from you. This one really has me stumped.

 

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Running for Self Care

Anyone who reads this blog regularly will have gathered that I live my life by lists. I organise my life around lists. And I tyrannise myself with lists. Lately, the pressures of looking after the kids (6-year-old whirling dervish, Sissyboo, and 2-year-old, Boo, my little bundle of amazingness who just happens to have cerebral palsy), holding down my job, managing Boo’s gazillion appointments (3-5 a week), daily therapies, keep on top of house stuff, well … I can’t finish the sentence because I’m too tired to think about it. Let’s just say, it’s a struggle.

And now, I find I can’t remember the simplest things. Everything has to be written down or it doesn’t happen. Everyday the lists get longer (despite me ticking off things) and I go to bed each night thinking of everything left to do. I even made a list in a dream the other night. I am not kidding.

The one thing that is never on the list is me. My list is organised in categories: Boo (he has separate lists for equipment, therapy and a new one for schooling – get the feeling I’m a bit anal?); Sissyboo, House, Work and Miscellaneous. I don’t even give myself space in the miscellaneous list.

I don’t have the time to think about me. Which is why my eyes haven’t been tested for 3 years, and I am long overdue a couple of routine medical things at the GPs.

But I also can’t ignore me either because I am not just a parent, I am a carer. If I break, other things won’t work so well either. I’m not indispensable (who is?) but not looking after myself will make the Boos’ lives a lot harder, as my recent back problems (the consequence of lifting an immobile and lengthy toddler-who-can’t-toddle) have painfully brought home.

I have to look after myself. I just have to. If I can’t do it for me, I have to for the Boos. And so I will.

And I am.

This week, and now that I have a lovely physio helping me to manage my back pain, I have started back in earnest doing something I never thought I would ever do before having Boo: running.

My running journey started just weeks after he got out of a 6-week NICU stay. I wanted to set myself a challenge. To do something tough to thank those who had helped Boo battle prematurity and meningitis. I wanted to help other families going through similar things, too. I wanted to raise money. So I rashly decided to run a half marathon. With no running history. With no fitness. With depression. With a newborn. While breastfeeding. I’ve told that story on the blog before, so I won’t tell it again. All you need to know is I did it. I ran a half marathon in 2 hours 11 minutes and raised £1500 for Bliss.

And then I got injured. And depression hit harder. And I returned to work. And… I stopped. But I knew I would start again. I knew I had to. And now I am training for a hilly (gulp!) half marathon in September to raise money for a charity that has done lots to help Boo and us in the past nine months.

Three years ago, running wouldn’t have sounded much like self care to me. You run, you get blisters. Your muscles ache. You get rained and sleeted on. If you have to run late at night (as I often do) you tread in dog crap and don’t realise until you find you can’t run away from the smell. It hurts for crying out loud. But for me, it is healing.

I’ve been trying to work out why.

It’s partly because it doesn’t feel selfish. I know rationally that doing something for me is for the kids, too, but can’t always persuade my heart to feel that way. Running is different. I run not to go faster or further but to fundraise. That gives me drive. And it helps get me fitter and boy, I need to be. Boo is getting bigger and bigger. My back has been in a terrible state and it just can’t be. You see despite all the gadgets and gizmos Boo is slowly getting through physio and OT, we as his parents, are the most essential pieces of equipment he has. Just as I clean and maintain his standing frame, chair and adapted buggy, I have to maintain me, too. Running helps me do that. It helps me work better for him. Knowing that means dashing out for a 30 minute jog feels much less selfish than it probably is.

I also run because it gives me head space. The only time my head is ever fully clear and free is when I run. Often I think a lot about Boo when I run. And I use Boo to keep me going when it’s tough. When my legs burn and my lungs feel overused, I think about every day he spent in the NICU, very time I’ve asked Boo to roll over again, or go from sitting to standing in physio when he hasn’t wanted to. I think about every negative pronouncement from medical professionals and how he has proved them wrong. He has never ever given up. Why should I?

But I also spend a lot of time running not thinking about Boo. On short runs (3 milers) I have taken to running in the graveyard near my house. OK, I know that sounds odd. Let me explain. I started doing it for practical reasons. The graveyard is large and I can run laps in it. But, I can also be home in 3 minutes, if I’m needed. When I was breastfeeding and when Boo was having seizures this felt important. Now I run there because I find peace in this place. Because it’s beautiful. And quiet. Because there are bluebells  and buttercups there now and the odd, confused bumble bee. Because there will be butterflies soon. Because I feel part of something bigger, a world beyond the claustrophobic one contained in our four walls. I need that. I need a little piece of a different life, if only for brief 30 minute intervals three times a week.

Running is respite. And respite is vital. If I didn’t run away sometimes, I worry I wouldn’t know just how much I want to come back.

 

 

A New Start without Homestart

Let me tell you a secret. I am not looking forward to this week. Not one little bit.

There are the four medical appointments for Boo, but that’s not it. To be honest, that’s fairly normal for us. No: it’s that this is the week my work pattern changes in quite a big way.

I have been back at work since May. It’s been hard, but also good to have something else to focus on and, honestly, I have no choice but to work if we want to keep our house in our town and keep Sissyboo at the school she’s at. But I have been unfeasibly lucky so far. I went back on a phased return initially and then was on a sabbatical of sorts that meant I focused about 80 per cent of my effort on things that could be done at home, electronically or on Skype. I’ve worked long hours, but flexibly. It’s worked. Mostly (although working through the night to make up for time lost to appointments can be grueling and is temporarily stymied because of the Boos’ sleep problems). But I am still standing anyhow, which is surely one marker of success. Some days I feel it’s the only one we have.

And I have a flexible working contract (thank you, lovely employer) so that I can still work a couple of days a week at home on days when Boo often has appointments. But on Tuesdays and Wednesdays I will now have a 130 mile round trip commute by car. I will work late in an office. I won’t be able to pick Sissyboo up from school. I will spend even less time with her and with Boo. Goodness knows when all her homework will get done or how we will get him all the standing frame time he needs.

And just as this change kicks in, we have to get used to another major adjustment: the absence of Homestart in our lives.

If you have read this blog before, you’ll know I’m a huge Homestart fan. Homestart entered our lives when things were terrible and no one else seemed able to help. I was severely sleep-deprived after 3 months of no more than 3 broken hours of shuteye a night and I was severely depressed. The world felt like it was made of cotton wool. I trudged through it with leaden feet and bleary and tearful eyes every day, but was disengaged from reality. I couldn’t keep on top of the house. I needed quality time with Sissyboo.

Homestart gave me something priceless. Three hours a week of respite, of a friendly and sympathetic ear can work wonders. It did for us. Sissyboo’s mood lifted. Things were still frantic, but the oasis of calm 180 precious minutes a week provided was something I always looked to to get me through the tough times.

We are in a better place now than in the darkest days of infantile spasms and steroids, and others need the service much more than us. So our volunteer visited us for the last time before Christmas. We are grateful for all Homestart has done for us and I will do all I can to help raise awareness of the amazing things they do for vulnerable families with young children on this blog and anywhere else I can.

But I am also very, very sad and somewhat at a loss without them. We are not coping fantastically at the moment. Sissyboo misses her afternoon with Mummy each week. She is very moody (she is just not her really, which is sad to see) and is not sleeping well. Boo’s sleep is, as always, much worse still. The atmosphere at home, especially in the turbulent evenings or desperately-seeking caffeine mornings can be tense. It can all feel a bit relentless.

But work, as one organisation who helps families like ours (but wasn’t in a positioning to help us) said to me, is my respite, surely? It has to be, was my response. And that organisation had a point. I am lucky to work. To be able to work, I mean. I don’t take that for granted and know of many who would welcome my problems in this respect.

But let’s be honest, here. Work is not respite. It’s a sometimes diverting, enjoyable but stressful and multiply demanding distraction. And while I wouldn’t change things (I think…), work takes with one hand (quality time with Sissyboo and what little energy I have left after all the therapies, anxiety and worry) what it gives with the other (a roof over our head). My colleagues are lovely, in the main, but they haven’t got a clue what my life is like.

Work is a lie. It’s a place where I cover up the reality of my life rather than a place where I truly escape it. That’s an important difference, I think. It’s exhausting leading this double life.

But I have to try to ensure that the new changes ahead on the work front don’t eclipse the knowledge I gained from our experience with Homestart. Little things, like the value of drinking a hot cup of coffee without distractions; the importance of taking a breath to catch up with myself; and above all, the importance of making time for our daughter. We don’t need formal respite to tell us these and similar things.

Now all I need to work on is how to make them happen, but for your sake, Sissyboo, I’ll try. I promise.

Good News Friday #25 and a Big Thank You

How on earth did it get to be Friday? More to the point, how did this get to be Good News Friday #25? This means, of course, that I have been blogging for nearly six months. When I wrote my first post and first Good News Friday, I didn’t know if they would be the last. I didn’t know if I could keep up the momentum of blogging (it’s been a struggle sometimes, but I’ve just about made it), or whether anyone at all would ever read this except me. That they do read this small, nichey blog, amazes and delights me daily.

I’ll reflect a bit more on my six months of blogging next week (Wednesday is the big day), for now, it’s the time of the week where I like to accentuate the positive and think about the good things that have happened this week, in a bid to get a bit of perspective on things (seeing past diagnoses, genetic tests, ongoing battles, problems with Sissyboo at school, and no washing machine for the past 10 days) and, as importantly, to gently encourage you to share any of your good news with me in the comments box or on Twitter (@premmeditations) or on the blog’s Facebook page.

So my good news:

Well, there’s Boo’s standing frame and boots, which I blogged about earlier in the week, so I won’t say too much about them again here, except to say that they are still causing endless hilarity and excitement here with Boo and Sissyboo. Long may that continue.

Then there’s conductive education. This week The Grumposaur came and he has committed to trying to do the sessions with him alternate weeks to help me with work. This is huge for all of us. The control freak, I mean adoring Mum in me (actually I am adoring Mum and a control freak, as you might have guessed if you regularly read this blog) would like to do all the sessions myself, but I am also struggling with work and I am desperate for The Grumposaur to be more involved in Boo’s therapies and treatments. I haven’t kept an exact tally of Boo’s appointments since leaving hospital last May, but it must greatly exceed 150 appointments, of which The Grumposaur has been at 3 (1 by accident as he happened to be in the hospital when the consultant walked in). He had a great time, and so did Boo. They adore each other. Being so involved in something so positive (not an appointment where we’re told, again, what Boo can’t do, but where we work with him to work on what he can) is energising and wonderful. I hope they both get lots out of it. It will be hard for me to let go of something (if only on an alternate week basis) but I know I need to. Some weeks I feel like I am going to snap in two.

But the big news this week is that The Grumposaur and I are going away for a night at a spa without the kids. We’ll be gone less than 24 hours and the kids will be with my Mum and sister. You can probably count the number of nights out we have had since the kids were born on one hand. We haven’t been away for a night together on own own since July 2007. It will be lovely. We deserve it. The kids will be fine. But I am still very nervous. Nervous Boo will keep my sister awake all night. That Sissyboo, who is having quite a wobble at the moment (Boo and school-related) will be difficult. If I’m honest, I worry we won’t have anything to talk about except the kids. But I hope it will be like it is on the odd occasion I go away with work: difficult until the moment I get there when it’s lovely and peaceful and I can worry (mostly) about me and only me. I’ll let you know how it goes next week.

The biggest news of all, I think, though, is that we have got through this week. A week of diagnoses and the dilemmas they have presented us with. We have decided not to get ourselves tested to see if we have the same genetic imbalance as Boo. We are content with the cerebral palsy diagnosis. We are moving on. And that feels huge.

I cannot thank all of you enough for the lovely comments you have written and tweets you have sent in response to my Diagnosis Day post. Many made me smile. Others made me cry. Mostly they made me feel welcomed, understood and extremely lucky to be part of the amazing community of parents in the blogging/tweeting world.

Thank you all. I haven’t been able to find the time to respond to all of your comments yet, but I will. They mean a great deal to me.

I hope you all have great weekends, and do share your good news. We love to hear from you.

Carers Week 2013

This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.

Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally expected to take on these roles whether they wish to or not and to the many men who are carers (as my grandfather was until my grandmother’s death) and for whom support seems so irrationally thin on the ground.

Of course I care for my disabled son, just as I care for his fighting fit older sister. But does that make me a carer? Back in January I was advised by a local Surestart Centre where I’d been attending a special needs baby group that I was and that I should register as such with my GP. I picked up the forms but couldn’t bring myself to fill them in. I left them out on the kitchen unit secretly hoping my partner would see them and an encourage me to complete them. Instead he said, ‘So that’s what we are now, is it? Carers. I thought we were parents.’

I totally understood and shared his suspicion of the label. Our son was under 1 at the time. Of course we had to do everything for him. Surely ‘carer’ was a more suitable label for others facing difficult, life-changing situations when typical family life is interrupted by accident, illness or injury, just as it did for my Mum when my grandmother was consumed by that most cruel of mental illnesses, dementia. Dementia eventually killed my Nan, just as I’m sure the strain of caring for her killed my beloved grandfather six months to the day before she died. The casualty list is even longer. Five years after my grandmother’s death, my mother is only just recovering physically and emotionally for this terrible period in her life.

By contrast, we were and are so very lucky. Boo’s challenges have been apparent from birth. They haven’t side-swiped us in quite the same way, although I still feel winded most of the time. For the moment, at least, and unlike so many other carers in the UK, we are able to spread the responsibility of our son’s care. My partner works; I recently (and with mixed emotions) returned to work. The two jobs enable us to pay for nursery for Boo for some of the week where others help us look after him. We are fortunate enough not to have to rely on carers’ allowance, although we know that might change.

The carer forms lay languishing for some time while I pondered what to do with them.  And then my own mental and physical health began to deteriorate quite rapidly. In addition to the depression and anxiety occasioned by dealing with Boo’s medical problems, I was suffering from constant, severe headaches and extreme exhaustion caused by Boo’s acute insomnia and the relentlessness of daily therapies and multiple medical appointments every week (sometimes every day). My back was, and still is, suffering from the strain of lugging around a 10kg+ baby who doesn’t bear his own weight voluntarily or consistently. It’s getting worse with every week that goes by. Bathing him has turned into an Olympic sport.

Who was I kidding? We were and we are carers. And the point of self-identifying as such, I belatedly realised, was that we are mentally and physically vulnerable as a consequence. We needed to be red flagged. Because when carers aren’t looked after, the consequences can be devastating.

Carers may need economic or legal advice, or even just the anecdotal wisdom of someone who has been there and done that. A person, for example, who can suggest you might try to bath your baby by putting an inflatable high chair insert into a laundry basket in the tub to help your groaning spine. Carers may need emotional support to overcome the crippling isolation that living so selflessly and intensely can make them feel. Other carers badly need respite, to recharge their metaphorical batteries, to rekindle all those relationships (with their partners, their other children, their friends) that of necessity get neglected in the hectic lives they lead, to remind themselves that they are individuals who are not solely defined by their relations to others.

Carers, in short, need caring for. More than that, carers deserve to be cared for by the communities they serve through their voluntary and often invisible labour. This may seem obvious, but sadly it’s not obvious enough that this doesn’t need saying now. Repeatedly. And very, very loudly!

As I can’t say enough, I am lucky. I am currently able to work. And exhausting though combining my domestic and professional responsibilities can be, work offers me collegiality, respite, a break. My paid work can involve long and antisocial hours and many would describe it as stressful. Let me tell you: it is a complete doddle compared to the work of carer. Because caring is work that really matters, that makes a big difference to individuals and to society as a whole. The stakes are unimaginably high and the rewards, though many and various, sometimes cannot completely compensate for the price paid by those who do the caring.

So this week, please do spare some time to think about the role that carers play in our society. In my experience of meeting many parents of disabled children over the past 12 months, carers warrant our utmost compassion but won’t want our pity. What they deserve in return for their selflessness is a commitment from us all to find practical and sustainable solutions to funding the support and services they and those they care for require.

It’s time to care for the carers.

 

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…