Author Archives: CerisJB

Raising children with disabilities – the secrets we hide.

As usual, this post was triggered by someone else – a mum in my Williams Syndrome circle writing about her struggles.

My life is good.  I might stretch to great on the good days.  I have 3 wonderful children; I have a job I enjoy and fantastic, supportive colleagues around me; I have enough money to keep a roof over my head and food on the table; I have an amazing partner, who is my rock, and an amazing family who love and support me, always.

In the last couple of years, I have also gained a tag along; a black cloud that hovers around me.  Sometimes it’s out of sight and at others it smothers me completely so I can hardly breathe.

Parents raising children with disabilities might not seem any different from you; we might walk the same path, we probably wear the same clothes and we speak the same words, but underneath we are wearing amour to face our daily battles.  Our path is littered with obstacles, we are carrying different loads and our goals sometimes seem too blurry to make out.  The longer we go on, the more chips our amour gains.

We have to fight for our children to have the same rights and opportunities as their peers, to be treated with respect and understanding.  To immerse ourselves in understanding our children’s disability so we can educate others to understand; to support our friends with their children’s disabilities because we know it’s only us who can truly understand.

I’ve spent the last 18 months preparing for Ruben and Finn starting school (a year delayed).  Chris and I have attended almost weekly appointments with professionals to ensure they would support us in our fight for a place at a mainstream school, filling in too many documents to count, and putting together a lengthy EHCP to justify why they should be educated with their peers and how we can support them to do so.  Trying to stay strong when professionals tell you they should go to a specialist school, when they’ve only spent a few hours with them, when you know in your heart what is right for the children you have spent their whole lives cherishing.

We can’t wish that things were different, because we all know that won’t change anything, though we wish we could take our children’s pains away.  We push down the ‘Why me?’ because it doesn’t help to ask.  This role is not for the weak, though we had no choice but to accept.  When your knocked down and exhausted, we have no choice but to get back up and carry on.  My role as mum to twins with Williams Syndrome has already taught me so much and brought with it many blessings – I have found part of my purpose and been pushed into a very specific path, and for that I’m so thankful.  Ruben and Finn are the happiest children I know and they set the world alight with their smiles.  I feel such joy and thankfulness every time I watch them say “hello” (in their London accent!) to every single person who walks by; every time they cuddle someone they’ve just met or one of their many friends at childcare, because that’s their favourite thing to do; every time they comfort someone who is upset, because they truly feel empathy for them and want to make it better.  They see the world as we all should; as endless opportunities for friendships and fun.  I see the light shining from them as I watch them navigate the world and there is no bigger blessing.

But it also hurts when others just see that you are behind your peers, that you haven’t hit the milestones when you ‘should’.  All I see is how much progress you have made; I celebrate every time you try something new, cry at every new word you learn, and praise you for trying things that I know scare you and that take so much effort for you to do.

I live with the grief of the loss of the future my boys might have had, the experience of parenting we had expected and been shown.  Most parents of children with disabilities (whether from birth or later in life) experience chronic sorrow – a grief to an ongoing living loss of the opportunities we thought they might have had, the loss of a ‘normal’ future, the hardships they may face because of their disability.   We feel a profound sadness that we carry with us, that is triggered by the everyday things you might take for granted – your child climbing up a slide; getting themselves dressed; taking your child swimming; going out in the sunshine; your child eating a solid meal; not having to get up in the night to give injections or medication.  I have lots of worries about what the future looks like, but I shut them down because I’m only strong enough to get through a week at a time.  (This is a really helpful website about chronic sorrow if this is relevant to you –

I’m very fortunate that I get respite a few nights a week, which makes it all manageable.  I use my trips away as much needed switch off time – it allows me to refresh and come back ready for the next round.  There are, of course, different challenges that come with sharing custody, but I could fill a whole website with those.

But most don’t have that freedom.

If you know a friend who is raising a disabled child or just someone whose child has additional needs, reach out and offer to look after them for a few hours.  The offers are usually very few and they are often too afraid to ask as they know how challenging it can be and don’t want to be a burden to others – just another weight they carry around.  I know we all have our commitments and time restraints, but what a huge meaning it will have to that person and their family.  Call me if you need me!



Move over failure, there’s a new guy in town…

Why do people feel like they are failing when they are actually achieving so much?  Never in the history of humanity have we been so highly functioning, yet we have so many people feeling like a failure, feeling depressed and anxious.

I don’t allow myself to use the word ‘failure’ because there is nothing helpful that comes from it.  I’ve gone through a really tough few years, on the edge of a breakdown, battling with depression and anxiety, but thanks to that, I have worked out what makes me happy and how truly resilient we can be when pushed to the extreme.

I’ve also given myself permission to be happy – sounds silly when you write it down, but we all have a right to be happy.  All of us think we should be achieving more, working harder, earning more money, going out more, seeing friends more often etc, etc, without actually allowing ourselves to be happy with what we have right now.

True happiness comes in acknowledging the things we achieve each day, taking pleasure in the small things and making plans and goals for the future.  My very wise partner once said to me, “You can’t be happy all the time”, and how true that is.  It struck me in that moment that I’d been striving for the wrong thing – we should be aiming to be content in life, with peaks of happiness, and hopefully only a few troughs of unhappiness, along the way.  It is impossible to be happy all the time as this is not a natural state of existence!

Life for me is more challenging than I ever thought possible, but honestly, I’ve never been happier (more content!)  I’ve learnt to treasure the small things, like eating my breakfast in bed whilst reading my book; having a glass of wine with my partner, talking about our week and planning for our future; watching the sunset from my bedroom window; listening to my children snore after a busy day; hanging out the washing whilst the sun shines on my back.  It sounds a bit cheesy, but through the midst of all the stress, you need those moments to get you through!

And I’m slowly learning to congratulate myself on my achievements each week – even when I’m asleep at 9:30pm each night, I feel happy in simply having made it through another day.  Did my children have clean clothes to wear today?  Did I feed myself and my kids today?  Did we get to nursery/school/work on time?  Then I achieved something today!

Unfortunately, it is all too easy these days to compare ourselves to others and what others ‘have’.  What I’ve learnt is that I don’t really care what others have, because those things aren’t the things that make me happy.  I don’t want a high flying career; I don’t want time to go running each day; I don’t want to sit having my hair done each month.  Those things make other people happy, but they aren’t for me, and that’s okay.  I don’t judge others on what they choose to do with their time, I’ve just stopped wanting what other people have, choosing to focus on the things that I want in my life.

So how do we find contentment in our daily lives and a sense of achievement instead of failure?

At the end of each day, write down 3-5 things you have achieved that day.  This must start with the small things – did a load of washing, made that appointment, made a home cooked meal, did some work – whether paid employment or cared for children if you’re a stay at home parent – got the kids to school on time.  And then you can write down the bigger ones – went to the gym, finished an assignment, completed a project, taught your child how to do something new, called a friend you haven’t spoken to in a while.  When you start to write things down on paper, you’ll see how much you have actually achieved in your day!

And here’s where the change comes – each week, write down the things you would like to achieve in the next week (your goals) – small and bigger things – note, we are not calling them the things you haven’t achieved this week, just a focus for your time in the coming week.   By calling them goals, instead of things we haven’t achieved yet, we remove the sense of failure.

Celebrating our achievements gives us a sense of pride, it allows us to take satisfaction in our daily life and brings meaning into the every day tasks.  Setting a focus gives us a sense of purpose and direction and having smaller goals allows us the opportunity to celebrate our achievements more often.  Once we get used to setting smaller goals for ourselves, we can set bigger, longer term goals and then you’ll be amazed what you can achieve!

We can all find contentment and happiness and we all deserve to – let’s get rid of failure all together.

p.s. I would highly recommend reading ‘Man’s search for meaning’ by Viktor E. Frankl – changed my whole perspective on things.

So many plates, I could have joined the circus

Sometimes the things you read on Facebook catch you unawares. I read this really powerful article yesterday about how women are struggling to get everything done in a world that demands so much of us. It expressed so well how I’ve been feeling over the last few months and mirrors the conversations I’ve had with so many female friends struggling with their daily grind.

I’m grateful that my friends and I can talk honestly about how we feel, but I know there are probably things we don’t share with one another – from fear of being judged, being embarrassed, not wanting to articulate something so we have to actually acknowledge it and so on…

I am someone who is always on the go, usually running late from trying to squeeze one last job in, constantly thinking, worrying about everything, and planning months in advance to make sure I don’t drop any of the million plates I’m juggling. I constantly worry about getting everything done, getting everything right and set ridiculous goals for myself. I very rarely drop these plates, but if I do, I spend a ridiculous amount of time feeling guilty – usually no-one is impacted but me!

I work 4 days a week to ensure me and my family have money to survive, I moved in with my Grandma last year to take some financial pressure off myself when my marriage ended, which means I now have a 1.5 hour commute to do the school run, before my work day even starts. I have two disabled children who have medical/physical appointments a few times a month – doubled because there are two of them and I can’t take them together since they distract each other so much. It would be comical if we weren’t trying to achieve such important life milestones that they are taking longer to reach (or inchstones as our Williams Syndrome family like to call them).

I am blessed to have such a wonderful team of specialists looking after them – Occupational Therapy, Speech and Language, the Health Visiting Team, Advisory Teaching Service, Paediatricians, Cardiology, Orthoptics, SENCos and their amazing childminders and nursery staff – all setting goals for them to achieve, which we are supposed to work on at home each week, when I’ve finished my 32 hours at work, done the 1.5 hour school run, cooked a healthy meal from scratch, exercised, read a book, spent time with my partner, helped Grandma around the house, done the food shopping, arranged some more appointments and caught up with friends. That’s quite a lot to squeeze into a day! Oh yes, and I was supposed to fit sleep in somewhere.

And then there’s my 6-year-old son, who is such an amazing big brother to the twins. He has learnt quickly that he often has to wait if he needs something because the twins can’t do anything for themselves at 4 years old; that it is quicker to do things himself and has turned into an independent young man who gets himself ready every morning; he’s learnt that the twins are constantly up to mischief and he has to be my ally to make sure we don’t wreck Grandma’s house beyond repair; who is sometimes angry at the world and can’t articulate his frustrations without shouting and screaming because he doesn’t know how; who is missing out on things that single children have because I have to split my time across all three and two of them have additional needs.

And then there is my partner – he leaves the house at 5:30am every day and works 15+ hour days, sometimes getting just a few hours sleep. I want to make sure he feels supported and loved, so we can enjoy this crazy life together – to make sure that we not only last amongst all our other pulls and stresses, but we grow and thrive too.

And then there is my travels – the little bug that sits constantly in my blood. I’ve learnt that having time to do actually do one of my true passions in life and sharing this quality time with my partner is extremely important to my happiness. There is the guilt of spending money when I think I should be saving, but then comes the acknowledgement that if I don’t switch my brain off for a few days every couple of months, I am actually going to implode on myself and have a mental breakdown.

I worry what would happen if I wasn’t here to do all of these things and then I remind myself that I wouldn’t be here to worry about that, so that’s one less thing on my list of things to worry about.

After each week that we survive, there is the niggle that tells me I should be grateful for my life – and believe me, I am so grateful for the many blessings I have. I know things could be worse and I know we have things so much better than a lot of people – but just sometimes, I wish it wouldn’t feel like a constant uphill climb. I know I’m not alone – it seems a common conversation these days – and I know sometimes, it is me that needs to put some of the plates down and save them for another time.

I want us women to keep talking about how we are, to keep helping and supporting one another and not putting others down if their choices in this demanding world are different from ours.

Sometimes all we need to hear from each other, is that we are doing a good job.

Battling the criticism…

Today, I helped a stranger access cancer support for her son who is struggling to find work after going through treatment for cancer.  Many people struggle more after their cancer treatment has finished because of the many side effects, as well as the psychological, social and emotional effects going through cancer treatment brings.

It might just be one person (or hopefully two!), but it felt good because I could really help.  She said to me at the end of our conversation, ‘You are really inspiring’ – well if only every day could be like that, I could really say I had achieved something!

When I started working in the charity world 6 years ago, I thought it would be nothing but positive things awaiting for me.  Unfortunately, that hasn’t been and isn’t the case.  I want to work for a charity because I want to try and make a difference, to try and do something good each day – and yes I know that is slightly cheesy.  But even trying to raise money for people affected by cancer and their families, we are criticised by many.  Criticised that we are asking for money, criticised that we ask too often, for too much and worst of all that we get paid to do all of the above!  We have to battle against around 160,000 other charities in the UK alone for people’s hard earned money and we have to battle the criticisms as well.

What the people criticising forget (and I mean criticising, not simply asking questions about where their money is going) is the reason charities exist in the first place – because people need them.  We are trying to help those in need, not to help ourselves.

The purpose of the post wasn’t to start arguing the case of charities, only that I felt proud today that I could help someone through what I do.  I am living Macmillan’s values in my day job but also in my life, because I believe in their values and they mirror my own – I am personal, open and I demand better for people.  I am learning daily and yearly to be an expert at what I do (personally and in work) however long that might take!  And I am trying to inspire others to be and do these things too.  I can brush off criticism because I believe in what I’m doing day to day and I know the value.

So I encourage other fundraisers to keep doing the good things you are doing and I also encourage everyone else too – if you believe in what you are doing, keep doing it!

Today was a good day… but tomorrow is going to be better.

New year, new me! I’m afraid not…

Well 2015 has been harsh to us.  But let’s stay positive – I’m finishing the year knowing how truly resilient I am – how strong and determined I can be.

Everyone is thinking about new year’s resolutions – “I’m going to do things differently next year, a new me!” Well unfortunately, you will still be the same person when you wake up tomorrow, with the same likes, weaknesses and so on… I’m not trying to be negative or put you in a bad mood, but trying to make you think slightly differently if there are things you want to achieve or do differently in 2016.

I’m the same person I was in 2014 but life has demanded more of me this year, challenged me to up my game.  I still have my weaknesses (chocolate and wine!) but I have also worked out what my priorities are and what is realistic because I’ve had to – a person can only do so much in a day.  So I’m not going into 2016 thinking life will be any different – the twins will still keep me up at night and life will still be chaotic – BUT there are things I want to change and achieve and I want to keep evolving as a person.  One example for you is that I want to stop eating so much chocolate, but I’m not going to stop eating it all together because that’s not realistic and it won’t make me happy!  But the reason and purpose behind wanting to change that element of my life is because we all know sugar is bad for us and I would like to be healthier, in order to help achieve the body shape I want.

So what do you want to achieve or change in 2016?  Why?  What is the reason?  You must find your purpose if you want to stay focused and must really want what you are trying to achieve not just think it is the right thing to do.  If you don’t believe in the purpose or actually really want it, why try?  It’s not enough to say I’m going to reduce my sugar intake because I know it’s bad for me, but to have the purpose of trimming up the fat on my body and being happy with the way I look.

And is your goal realistic?  I’m not cutting down on chocolate to lose weight as I’m not sure that is realistic – instead cutting out some of the sugar in my diet will help aid me in toning up, in combination with working out.  If you want to go to the gym four times a week but only managed once a week this year, then that isn’t realistic for you – either because the motivation or purpose isn’t there for you or because life puts different demands on you that aren’t going to make this possible no matter how motivated you are.  Maybe aim for twice a week with one run or workout at home?  Or just accept that going to the gym isn’t for you and find something that is.  When you plan to be realistic with real purpose behind it, you will find change much more achievable.

And remember – this is life!  It doesn’t slow down and it will throw challenges at you to make you question yourself and that’s when you will wobble and find those excuses – ‘I’m too tired today’, ‘I’ve had a stressful day’, ‘I feel down today’…  But believing in your purpose means you can be strong in those moments and when you can do that, those small changes become part of your daily life.  They don’t become the added extras or things we do just when we can be bothered or if we’re having a good day.  Working out becomes part of you; eating healthily becomes what you do, not what you think you should do; making more time for family/friends/whoever becomes part of your week, not something you plan to do next week.

So if you want to make tomorrow different then do it!  But don’t use a new year as the reason, use a new day.  Be better tomorrow than you were today IF you have a reason to be.  Find your reason why and be realistic – small changes with purpose and you will find change is possible.  And then we can achieve anything!

Remember that today is the youngest you will ever be #noexcuses

Good luck and happy new year!


Most of us are winding down now, looking forward to Christmas, to getting some rest and eating and drinking lots. Chris and I may be strange, but we are looking forward to having chance to work out more! (We will be eating and drinking too!)

I don’t really believe in new year’s resolutions – too much pressure and if you want to do something, do it now! I wanted to write a post for those people who are in need of some motivation…

I am the person who could have all the excuses in the world not to exercise and not to be ‘in shape’. I have a long list of excuses and I could choose many of them on any day – I’ll share just a few:

* For the last 18 months, I am surviving on 4-7 hours of broken sleep
* Last year, I had a c-section – which I’m still recovering from
* I get pelvic pain from a forceps delivery in 2012, which locked the SI joint in my pelvis
* I have pain in my hands with certain movements because of the excess fluid following my twin pregnancy
* I regularly have back and shoulder pain from lugging three children around!
* I have no time to go to the gym because my husband works late most days and I have to be home with the kids
* I have no money to pay for the gym because I pay for three lots of childcare!

I could go on, but I don’t want you to feel sorry for me. I refuse to let these excuses define who I am. I generally feel exhausted, I ache when I wake up and my husband is rarely home to help with bedtime so I have about 2 hours every evening to do everything a responsible parent needs to (how boring…) and anything that I would like to do when I’m finished with that!

But here’s the thing – I am in the best shape of my life. I am motivated to exercise because I want a better and longer life for me and my family.  We can always make our excuses but the only excuse we really have is ourselves.

So how do I fit in exercise with no time, without leaving the house, with no kit and that doesn’t hurt my battered body?!  I want you to check out and find The Zuu workouts on Youtube.  It is movements that anyone can do, you only need minutes, not hours and you can do it from the comfort of your house!  I’m not being paid to write this, these workouts have changed things for me.  I can workout in the living room when I’ve put the kids to bed, I don’t need any kit, to pay anything and I don’t need to spend hours when I only have precious minutes.

So what excuse did you have today?  Put it aside – believe that you are worth more and that you can do more.


ps. If you want any help with workouts, please get in touch with me/my husband!

Old friends

I’m meeting up with two of my old uni friends on Friday for a few drinks – I know, imagine how excited I am!

We met up a few months ago, the first time the three of us had been together in 14 years – 14 years?? How can I be that old?! I lived with all boys in my first year of uni, so it seems fitting that I ended up with a house full of boys for life…

Sitting across from these two 33 year old men, I couldn’t help but see them as the two 18 year old boys I spent such an important year of my life with, even though they are both very important now working in law and banking. We went out in the world together and they looked after me when I had so much to learn in my first year away from home. One cuddled me when I broke up with my boyfriend from home even though he’d only known me a few days, because he knew I was alone. He also played so many pranks on me I can’t remember them all, just to keep me on my toes and prepare me for the real world. (I once couldn’t find my forks for about 2 months). The other is responsible for my love (still) of garage music and Bob Marley.

So why am I writing about them now? Because even though we haven’t seen each other for so long and our lives have dealt us very different cards, we still have history. Friends will always be friends if you have shared life together. They might not think that going out for a few drinks with me is a big deal, but it is to me. Firstly I get a night out (hooray!), but I feel really touched that they actually want to meet up with me – I’m a mum now with a zillion children, and they don’t have kids yet, so it means a lot that they are still interested in who I am. They will probably tell me they were just bored and didn’t have anything better to do, but I’m okay with that too!

And meeting up with uni friends also means I can remember who I used to be then and be proud of how far I’ve come. I can enjoy finding fun me again amongst the chaos of every day. If you’re reading you two, thanks for making time for an old friend :O)
And for any other long lost friends reading this, I do think about you all, always with a smile at what we used to get up to – let’s book our meet ups in too.