The difficulties of Christmas and what I should have told my friends this year

I am an emotional wreck. Christmas does this to me every year. Like many aspects of motherhood, it shines a light on all my worst traits and makes me a ball of stress and overwhelm. 

My husband bears the brunt of this and it makes things a little (ahem) tense at home in what’s supposed to be the season of goodwill.

Much as I want to love Christmas, I find it hard. I want it to be a happy, family-focused time but the expectations rarely match up to reality. It cannot be the relaxed fun time I want, because that’s not what being the parent of a severely disabled child is like. At least, not with my child. Spontaneity and fun are possible – but usually planning and structure are the keys to happiness.

It breaks my heart to see this photo. I know how desperately I wanted a happy baby
and a happy Christmas

The first Christmas after Ted was born I was in a dark, bleak place desperately finding my feet as a mum with an undernourished, unsettled, unrelenting baby. There was very little joy in it for me. And if I remember rightly, Ted came up in hideous hives and we spent most of Christmas on a frantic tour of out of hours followed by a NYE in A&E with a suspected chest infection and terrible reflux. Fun times.

So, much as we have all moved on from that particular low point, the ghosts of that early trauma still colour my Christmases. I commented on a post on Instagram the other day about there being an element of sadness in me when I think about this time of year. A lovely lady chimed in to suggest a new family tradition like eating chocolates snuggled up in bed while reading new books on Christmas Eve.

I didn’t have the heart to tell her that my kid can’t eat chocolate (or indeed anything that isn’t puréed and fed to him while in a super upright and supportive chair). Neither can I keep him still long enough to really ‘snuggle’ in a bed. Or that he is rarely open to new things. Books can be an especially disappointing example, provoking whingey cries at an unwanted and unfamiliar tale. We get there eventually but it takes a few tries. I’m sure there are things that we can do. But this sweet and seemingly simple suggestion made me cry much more than I was expecting.

The underlying anxiety that I have lived with constantly from the moment I became a mum doesn’t help. It gets worse at this time of year as I struggle with my desire for everything to be taken care of properly.

The irony of course is that nothing gets taken care of properly. I am a terrible multitasker (as most people are) and a seasoned procrastinator. In my defence, I have a lot of plates to spin and in trying to keep them all from smashing I can only focus on what’s immediately in front of me. I think we can all agree that a lack of forward planning is the worst when you’re on a deadline of last-posting dates and total seasonal shutdown. 

Cheeky Dilly elf

And so, if I manage to buy Christmas cards, they don’t get written. Or I write them and don’t send them. The presents are usually rushed purchases that I desperately want to be perfect but there are too many to think about. Ted has SO many people in his life. Therapists, TAs, teachers (there are two), a PA on transport, support workers… not to mention the cleaner, my nieces and nephews, parents, in-laws, sisters and husband, kind friends and their kids. 

I am SO lucky to have these people and this dilemma, I know.

I mean, to be stressing about needing to get gifts for my cleaner (and her super thoughtful daughter who passes on unwanted dolls to Dilly) screams of privilege. First world problems they may be, but they make my head spin nonetheless.

Some of my favourite people (when we were younger
with fewer children and lots more sleep)

The huge pressure I put on myself doesn’t help. Essentially, I try to make up for my year-long disorganisation with one last attempt to show people that I am thinking of them.

Because I am. Constantly. I may not send a birthday card on time (or at all). I probably don’t often comment on your Facebook pics, or congratulate you on all your achievements or go to your parties. I rarely phone you or reply to your texts within a timely fashion. It might take me six months to respond to an email. But I am here.

So to all my friends, these are some of the things I think about when I hear your names or see your photos. Maybe I will get the chance to tell you individually next year. Especially if you keep doing what you are doing and sticking around even when I don’t appear to notice.

Your kids are growing up beautifully. You’re doing a great job.

Your children are giving you a hard time right now. You’re doing a great job.

Your kids are having a hard time right now. You’re doing a great job.

I’m so happy you are thriving. You have grown so much this year.

I’m so sorry you are suffering. You will come out the other side eventually, I promise.

Your business and your work is amazing – I’m so proud of what you’ve achieved.

I’m sorry that you are grieving for dear ones lost this year.

I wish I could take away the pain of your long-term health condition.

I know you miss the way things used to be. 

You’re feeling overwhelmed but this too shall pass.

Your marriage may be over but your life isn’t, even if it feels that way sometimes.

You have the strength to overcome yet another hurdle. I know you do.

Don’t compare yourself to others. You are achieving great things every day. 

I love the support you are giving other women – personally and professionally.

I admire your courage in following your dreams.

It’s so great to see you find happiness with someone new.

It’s lovely to see you living a full, happy life without a partner.

You make me laugh and always know what to say.

You make me think and challenge my outlook on the world.

You know me better than most people and I’m so grateful for our years of friendship.

The gift of… nothing

Happiest birthday photo of Ted in six years. (Ridiculous filter appiled in an attempt to hide the mess in the kitchen!)


My children have their birthdays two weeks apart and this year we are doing a joint party in the middle of them, so yeah, my October posts may touch on this theme occasionally (ahem).

In the midst of my slightly angsty reflections on Ted’s birth, I realised mere hours before his special day that I hadn’t bought him a single present. Nor did I have a clue what to get him. After mulling it over, I decided I wouldn’t bother.

That sounds shocking, doesn’t it?

The truth is, I wouldn’t be buying for him. I would be buying for me. It’s a convention. A societal norm. We like to feel special and be treated on our birthdays – but as I can’t even be sure Ted has a concept of birthdays, do the normal rules apply?



Yesterday was World CP Day. Any half decent special needs blogger would have had a post prepared, but I didn’t feel much like saying anything. Or doing my part to raise awareness and educate others.

My last day with a bump instead of a baby

The last time 6th October fell on a Saturday was the last day that Ted was safe and happy in my body.

I’m not going to say that it was the last time that all was well in my world. It sounds dramatic and while it might keep people reading, it simply isn’t true. To say that would be doing Ted a huge disservice.

But 6th October 2012 was the last time he didn’t have cerebral palsy.

That Saturday night that my waters broke, starting a birthing process that would turn our lives upside down much more than the typical first baby does…. and that’s saying something.

Although the rawness of what happened to us during Ted’s birth has subsided, I still wake up a little out of sorts around this time and having the dates match up with World CP Day, really hasn’t improved my mood much.


Today, Ted turns six. I wish I could be all ‘Six! SIX! Where does the time go?!’ but actually, it feels like six years ago that he was born. Perhaps that’s what happens when everything stretches on so long. Ted is still in nappies, he still gets spoon-fed pureed food, he still drinks formula from a bottle, he still needs a dribble, bib, he still wakes up almost every night, he still requires 24-hour care, he still hasn’t hit most milestones. He is, on paper, still a newborn.

Expect that he isn’t and I no longer dwell on this dreariness. I feel the need to acknowledge it, hence this post where I am processing my emotions through writing (my standard self-medication) but Ted is completely something else.

He is not his diagnosis.

He is not the list of conditions and issues that appear on his hospital letters.

He is not just the product of a birth that went wrong or a boy brain-injured by the errors of two thoughtless midwives.

He is a six-year-old boy. 

He is a six-year-old boy who likes to laugh at farts in the bath and his sister’s funny dancing and silly accents and enigmatic speakers and people hunting frantically for lost keys.

He is a boy with no words but who knows how to get what he wants.

He is a boy that has no need or want for birthday presents, so instead gets a big shiny balloon or two and a day out with his family.

He is a boy who smiles at everyone so broadly, that everyone stops to talk to him when we are out.

He is the boy who made me a mother. Who has shown me the very best and very worst parts of my personality.

He’s the boy I would do anything for. I know him almost better than I know myself and I want to be the best mum I can for him. I don’t care about the ‘what ifs’ and ‘what may have beens’ because we have Ted. Smiley, stubborn, vocal, funny, innocent, huge-hearted Ted.

Who happens to have cerebral palsy.

More words about work

When I was young and had a career with kudos, I was happy to define myself by my career. I was proud of working in magazines and loved that people were excited by my fun job. It was always a talking point.

Photo by Charisse Kenion on Unsplash

After Ted was born, I had a wobble about working. On one hand I had been through an earth-shattering maternity leave, where my whole life was turned on its head. You feel so different having become a mother that your goals and priorities naturally shift, but never so seismically as after a traumatic birth and a journey on the rollercoaster of life-long disability.

Lacking the motivation to enthuse about fashion, culture or current affairs, my family gently but firmly persuaded me that I should reframe it as respite and give the magazine world another whirl. While never diagnosed with PND, there was no doubt that I was pretty low and constantly stressed and in tears. Looking after Ted was hard going. He cried almost all the time (in the car, the buggy, the flat, the park, the cafe, the bus, the train…), needed constant attention, near-constant movement and often required close proximity to a warm body to make him feel safe. I struggled with his medical fragility and stressed a lot about how I could ever leave him with someone and go to work.

Luckily grandma took Ted two days a week and we found a reassuringly experienced special needs nanny for the third day so that I could return to Marie Claire on a part-time basis.

A lost workforce – why mothers of disabled children give up their careers


Inspired by this recent post by the brilliant Penny Wincer and this old one from the equally marvellous Jess (whose Stories With Sam posts are always a considered, informative, honest look at parenthood and disability), I wanted to chime in with some more thoughts on this subject.

I haven’t worked since May 2014. In giving up my job, I am one the 84% – the staggeringly high proportion of mothers of disabled children who do not work, according to The Papworth Trust. And yet, bringing up a disabled child costs an average of three times more than raising a typical child. Coming at this from the inside, these figures stagger but don’t surprise me.

Reading the Trusts’ facts and figures sheet was pretty depressing. Disability within a household brings extra costs, yet is often a factor in lower incomes and greater poverty. There’s no escaping from the fact that statistically, disability negatively affects pretty much everything from education to work to transport to holidays. That’s not to say that all lives affected by disability are sad (if there’s one thing I can’t stand, it’s pity) but it can be tough, especially financially.

It’s hard to want to leave this face and go to work but I do want to – not least because that chair he’s sitting in (a beanbag with a moulded seat – costs around £1,400 to buy. Ouch.

Interested in other people’s stories, I asked in my closed Facebook group why other mums had stopped working, what industries they had left and what struggles they faced. The same themes came up again and again…

Being brave



Well, that was a slightly longer break than intended! I wish I could say that it was because I was travelling somewhere exciting, or working hard on new projects, or spending loads of time on self-care and soul-nourishing pursuits.

Elements of those things have been bubbling away – potential new social media clients, a few short-hop days out and nights away, and the odd bit of time to myself *has* happened in the past three months… Mainly, though, it has been the drudgery and grind of life as a stay at home mum. Not that being a SAHM is always boring – and I’m a firm believer that it’s vital, important work – but in my case it has been a bit like being in survival mode.

My goal has just been to get through the day. Ted has been unhappy and in pain, causing sleepless nights, early mornings and high anxiety all round, cross words in my relationship, doubts about my parenting, an influx of those insidious little thoughts that chip away at your confidence and weigh you down. When every waking moment is taken with caring for a child (one or the other always needs something, as is the nature of parenthood) it is like treading water. It has been very tiring but I feel at last, the lifeboat is here and I’m not going to go under after all.

A dose of cranial osteopathy and some hardcore reflux drugs have sorted the boy out, for the meantime at least, so I can get back to living rather than just existing.

And lo, not only is it 2018 already, it’s halfway through the first month. The time when your good intentions may have slipped or the strict regime you have placed yourself under suddenly feels a bit too much. After so many failed attempts at diets and giving up smoking on Jan 1st in my much, much younger years, I have not made resolutions for a long time.

Instead I am using a guiding word. Do a simple exercise to find one for yourself here and I will post a video from the very excellent Lucy Sheridan (aka The Comparison Coach) at the end. My word is COURAGE. It is underpinning everything I am doing these days and for all of 2018. I needed it to get back on the horse (keyboard) and show up here again.

  • I needed it to make a tough decision about Ted’s medical care that I thought I could manage more naturally.
  • I am using my courage to tread an unusual therapy path with Ted that goes against conventional NHS thinking about physio and the body, but which makes huge sense to me and benefits him without a doubt. It involves shouldering most of the therapy work myself (though I may change that if it seems I am being a martyr or a control freak, or both, about it) and a Mon-Fri 6am start to get it done before school.
  • Courage is helping me to push myself from my comfort zone and to embrace change. This is something I always find difficult. I once wore the same homemade sweatshirt and jogging bottoms (thanks mum) every day for almost an entire summer when I was about nine. Yes, I am that cool. Familiarity is comforting to me but it also means I put up barriers sometimes. I want to be more fluid and go with the flow and open myself up to new things.
  • Courage is driving me to shout about my skills and capabilities and get a new business off the ground.

I think five years at home with children (minus nine months back at work after having Ted) and giving up a media career and a very London life to live in small-town Wiltshire have suddenly taken their toll on my confidence. I have taken steps to get back to a more dynamic, creative me. Yet, after the initial elation at passing my Digital Mums course with excellent stats and having a whirlwind time while training, I have been in a funk. Lost my mojo. Felt flat and not worthy of much. I withdrew and retreated. I listened to the negative voices. Not any more. They have had their time.

No one but me can get me out of this dark hole, so courage and grit and bit of self-love (not that kind, smutty) is what I need right now.

See you out there, somewhere?

Emma x

Live well, eat well, feel happy – 7 essential life hacks for busy mums


Photo by Glenn Carstens-Peters on Unsplash
Hang on. *All* mums are busy, aren’t they? It comes with the territory. We are (usually) the driving force behind the household. The person who knows where everything is, the one who does the washing, the cleaning (or who briefs the cleaner), the tidying, the shopping. We are the replenisher of toothbrushes, keeper of tissues, signer of school forms, and so on and on and on.

The list of tasks is endless but while I have previously railed against the mental load, I am now here to bring you some super duper life hacks to combat that. Seven simple ideas to free up more headspace, make life run a little smoother, maybe even save you some money.