Friday, 9 December 2016

Five years

Today Mojo is 5 years old.

Five years since we waited, braced, terrified, hopeful, to meet our baby.

Five years since you waited seven minutes to take your first breath.

Five years since we were wheeled down the corridor of the maternity ward to applause.

Five years since the night I lay awake in a side room at the hospital just staring at you. Trying to get my head around how someone so tiny and vulnerable could be so strong and resilient.

Five years.

Five years of caring, of revolving around you.

Five years of newborn sleeping patterns.

Five years of learning. Medical acronyms, Makaton signing, how to negotiate, how to get the right care, how to say no.

Five years of living on standby for a crisis.

Five years.

Five years of worry. Are we doing this right? Should I be doing more?

Five years of coping, compromise and copious amounts of Calpol

Five years of exhaustion of an unprecedented magnitude (we used to be sleep people, lie in people, duvet day people)

Five years of never, ever, being on time, for anything, ever.

Five years

Five years of explaining, 'it's a bit like Cerebal Palsy'

Five years of interpreting the smallest of noises and hand gestures

Five years of going completely grey (Less silver fox, more completely grey work horse)

Five years of administering physio, manual lifting, adapting.

Five years of carrying you up to bed

Five years

Five years of knowing that not for a single second on even the hardest of days would I have chosen any other path for myself.

Five years of catching your eye across a room or in the rear view mirror and feeling overwhelming gratitude because you're there, meeting my eye, returning my smile.

Five years of pride, of awe, of amazement (how can people be giving me credit for you, you're so much braver, tougher, resilient, determined than me. Than anyone I know).

Five years of the most rewarding 'job' I've ever had

Five years more than we were ever supposed to get.

Five years of love, laughter, joy and living each day purposefully.

Oh Mojo, how we love you. Happy Birthday our spectacular girl, I run out of superlatives to describe you and the effect you have on our lives. Thank you for all the fighting you do, thank you for letting us witness your amazing feats for these past five years.

Here's to the next five. We'll try to keep up.





Tuesday, 20 September 2016

A letter to my 'other one' on her 2nd Birthday.

My youngest is rarely mentioned in this blog but yesterday I wrote her a letter and today I wanted to share it with you because while I bang on endlessly about the amazingness of my big girl, her little sister is busy being quietly fabulous in the background.

My darling baby girl,

Today you are two. There are so many things I want to say to you. Things that for now you won't really understand. I'm writing them down anyway so that you will know when you are older that I never lost sight of you. Not once.

You see I hear it. I know that you are more often referred to in relation to your sister than as yourself. You are the nameless ‘sister of’ just as I am the nameless ‘parent/guardian of’. Today at the hospital someone referred to you as my ‘other one’ and I could have cried. You’re not my other one, my darling, you are my wonderful, hilarious, clever, special you.

Instinctively you have always understood. You have an amazing ability to silence when you know we need to deal urgently with a medical need. You know where to pass sick buckets from, you understand (and recently have been trying to help with) tube feeding. You come running if I’m ever out of the room and you think she needs me. You pick up toys she can’t reach and retrieve dummies or chewies. 

At the tender age of two you understand that you can’t just take things off your sister the way most little sisters try. You know she can’t fight you or chase you and you know that isn’t fair. Amongst your first words was the gentle ‘there there’ I’ve heard you comfort her with so many times.
You have spent endless hours in hospital waiting rooms and at her bedside when things have been tough. You have gone home with Daddy or I while the other sleeps at the hospital.

I see you battling with jealousy and confusion and I understand truly I do. It’s impossible to explain effectively to you, at 2 years old, why when you throw food at the table it’s naughty but when she throws food it’s because her brain will not cooperate with her muscles.

That occasion when I turned my back and you hit her (not hard or with any venom) you had confessed before I even turned around and without me saying a single word you took yourself off and sat on the step and you cried. I cried too. I cried for you, for the magnitude of being the responsible baby sister, the big girl, the carer.

I forget, my baby, that you are so young. The kindness and patience you demonstrate far exceed that which could be expected of one so young. It’s a lot to take on being part of our team but you do it so beautifully.

I know that you love your sister, you tell me, you tell her. You often cry when we drop her at school because you miss her during the day. But today is about you and I want to promise you something, sincerely.

I promise that you will never come second in our house. You might feel like you do, you might see the time and energy it takes from us being your sisters parents but know that we are yours too.

It’s okay for you to need things, to need us, We’re here, we’re listening, always. I promise you that I will do everything within my power to ensure you don’t miss out on things or feel inhibited doing things she will never do. You never have to apologise for being yourself or achieving things or wanting attention. I want for you never to feel the weight of the responsibility you carry. Your Dad and I will carry your share.
We didn’t conceive you to be anything other than you. Just you. Not a carer, not an assistant, not your sisters voice or her hands or her legs. Just you.

Your big sister will always love you unconditionally, you are her hero, her friend, her partner in crime. You can just be her little sister and I will just be mum, and dad will just be dad and we will just be us.
I love you and am already more proud of you than you will ever know.

All my love
Mummy





Wednesday, 7 September 2016

First Day of School

Today is a big deal. Today is Mojo's first day of school.

It's not so much the practicalities of her being away from me because she has attended the pre-school full time since last Christmas. In Mojo's eyes she is just going back to school with a new classroom and a new teacher.

I know different though. I know because I remember the meetings in early 2012 when I held her smiling and tiny in my arms while doctors talked about just 'going away and enjoying her while we have her'. I remember telling the mums in the parenting class I attended (to make up for the fact that it was 'unnecessary to do NCT', we wouldn't be taking a baby home) that it was unlikely that I would ever have to think about schools for Mojo because she was not expected to live that long. Retrospectively ladies, I really should apologise, that was painfully blunt and unnecessary, especially to say to other new mums, but I was at the stage where I was saying things like that out loud to remind myself not to get carried away!

So here she is polished and ready for her first day of school. The calendar is something we occasionally use at home to explain a busy day or make sure she doesn't get confused. Used in a photo like this I thought it looked a little bit like we were holding her hostage and providing proof of life.

Then I figured that's exactly what this is. It's proof of life, and a beautiful one it is too.


Wednesday, 31 August 2016

Independance Days

Currently in my (not enormous) kitchen I have five modes of child transport.

FIVE

In fact of you count the old one hidden in a cupboard you could make that six.

There is so little floor space that making a brew or reaching the bin involves a crystal maze-esque feat of physical agility. Still I can't bring myself to care that much because the latest two additions which have pushed us from buggy park status to full on Mothercare showroom have brought with them so much joy that fretting about floor space seems ungrateful.

I've talked before about Mojo's impending adventures with independence and over the glorious long sunny(ish) days of summer many of those dreams have come to fruition.

First came the Bugzi.

Watch me go...
My husband equated it to watching Mojo take her first steps. It was the first time she has ever been able to hold her head up and purposefully cross a space under her own steam. The Bugzi is a charity-provided electronic chair operated by switches (forward/left/right) it is truly remarkable.

Once she had worked out that she was in control, the first thing she did was head over to a table of things she wasn't allowed to touch! Its a weird parental juxtaposition to be so wholeheartedly cheering mischievous behaviour. Meanwhile back at home our house isn't really equipped to allow her to use it BUT once it gets in the school corridors....well, that mischief will certainly abound.

 Then, only a week later a very exciting delivery arrived at our door.

It was the streamers that pushed me over the edge. Often with adaptive equipment it's ugly, big, inelegant and functional. Aesthetics are obviously not a major concern when designing for NHS equipment. Mojo's new trike, however, is nothing short of beautiful. It is brightly coloured (in her choice of pink) it features a picture of a kitten. It has a little bell. The silver and pink streamers, some with 3D stars on, are attached to the bike by multi coloured butterfly badges. A bag at the back, which holds all the tools and straps, proudly displays her name on a registration plate. It's just, just perfect. It makes my heart sing that she can go out to do something she loves on her very own bike which is just as beautiful, if not MORE beautiful, than the bikes she has admired for so long. All of this AND she is essentially doing an hour of intensive physio without even realising it.




The last of our vehicular discoveries is, thankfully, not housed in my kitchen. This one was discovered by the beach in Mawgan Porth a beautiful Cornish beach resort which has been the destination of our family holiday every year since my mum retired and took us all to Cornwall to celebrate, we loved it so much that we all go back each year to spend time together. Its my happy place. Getting Mojo onto the beach has always been a faff and the older (heavier) she gets the more difficult it is becoming. It's not just her we need to get onto the beach it's also something for her to sit in that can hold her upright (folding beach chairs are useless) so we find ourselves with an enormous amount of kit for even a short beach play. Imagine then our joy, when sitting outside the surf shop was a beach wheelchair available to borrow for an optional small donation. My ingenious husband realised that the heavy floor sitter we usually wrestle to the beach fitted perfectly on the wheelchair and before I knew it, we had what can only be described as a beach throne and Mojo drifted across the beach waving at the crowds and laughing until she got hiccups. SO brilliant.

The importance of achieving more independence for Mojo cannot be overstated. Ever since we were able to look past the life-limited label and allow ourselves to embrace at least the idea of a longer future, our aim has been to ensure that Mojo is equipped to get the most out of life. Not for our sake but for herself, to dream big, to aim high, to ignore 'expectations' and roll her own path. Every inch closer to the goal of independence in whatever form it will eventually take, is a cause for celebration.

So now as we find ourselves days away from the start of Reception we know that she is completely ready for whatever that will bring!





Tuesday, 2 August 2016

Yes I Can

Today is the 2nd August. The 5th anniversary of the day our lives were forever changed by Mojo's diagnosis.

I started to write a post that was a letter to myself five years ago. What would I want her to know?

I couldn't find the right words, I was going in circles. Part of me wanted to say 'everything will be okay' but that isn't true and certainly wasn't true then. I wanted to tell her all the things her baby is going to achieve but I was worried she wouldn't appreciate them without the strive to get there. I was worried she would only see the implications of what she can't do. I found myself wanting to protect 4 year old Mojo from 5 years ago me's judgement. Let's be honest I over-thought it. Massively.

So I abandoned it and instead offer this Olympic themed story for this year's Diagnosis Day.

When the Olympics were in London 4 years ago Mojo was only tiny and we took her out to see the
London 2012
torch parade and had her photo taken with a Paralympic torch in Sainsburys (as you do). I found the Paralympics fantastically inspiring. The Channel 4 coverage led with the slogan 'Meet the Superhumans' and even though we were only just beginning to learn what Mojo was capable of it stuck with me, she was a little superhuman in training.

When the advert for the Rio Paralympics was launched recently with the soundtrack 'Yes I Can' it felt amazingly appropriate for the next stage of her development. I just love it. I love the music, I love the strength of the imagery. For Mojo, and other children like her who are just starting to explore the world for themselves I love the message this gives them about limitations and achievements. (Link to see 'Yes I Can' trailer). We met our little superhuman four years ago and in a world where she was told she couldn't before she had even taken her first breath she resolutely and loudly proved 'Yes I can'.

At the end of the school term Mojo took part in Olympics week. Each child was given a bespoke Olympic challenge to complete as part of the event. When the sponsorship form arrived home in her bag I was a bit taken aback. I will 'roll for 5 meters on my own' it said. This time last year that would have been an impossible dream. Only a few months ago she hated lying on her stomach and was unable to roll from back to front independently. The effort, determination and bloody mindedness that has brought her to being able to attempt a challenge like that is completely beyond me. My amazing superhuman. My girl. It might seem like a very mundane achievement but it is truly a remarkable feat of endurance.

On sports day we watched as she wholeheartedly competed in team games with her schoolmates. The concentration as she knocked down skittles, carried buckets and threw balls was breathtakingly beautiful. Those few hours watching the children competing, achieving and enjoying every moment were amongst the most life-affirming I've had. Children I've only ever seen in their wheelchairs making spectacular, emotive, efforts to take part in their walking frames. The atmosphere of support, encouragement and unadulterated pride was palpable. My very favourite photo of that day is of Mojo taking part in a skittle relay, her teacher is pushing her chair and she is reaching out for a skittle to knock down. She is in focus and the background is slightly blurred but what you can pick out are the arms in the air and the open mouthed encouragement coming from each of the spectators, some friends, most strangers, all shouting her name, all willing her on. Lump in throat time.

It might not be the real Paralympics but it might as well have been for the joy I felt.

On the last day of term I collected Mojo and she was holding a certificate, a special recognition award for her consistent achievement in communication and physical development this year.

'That's lovely sweetheart' I said

'We only give out a few of these you know' the headteacher said.

I think she thought I was being dismissive, when in truth I was trying to hold it together. I did so until the drive home when I sobbed with such happiness and pride and love for my remarkable daughter.

5 years ago today they said she can't, she won't.

'Yes I can'


August 2011
August 2016




Sunday, 10 July 2016

The Hunger Game

One very normal Tuesday evening.

Two adults and two children sat round a table and had dinner. They all ate, they all laughed, they all talked about their day.

Not exactly ground-breaking family activity, right? But it was for us.

There is something emotive about food. Nourishing your family. The association between food and love.

Before Mojo had her g-tube fitted 18 months ago, feeding her dominated my every waking thought. It consumed me (if you'll excuse the pun). The hours I spent syringe feeding milk, 5mls at a time, to try and reach the magic 600ml volume prescribed by her endocrinologist. It was torture for us both. At that time she was eating some solid food too, only tiny amounts and it required full supervision, with very specific environmental criteria. On the days when I got half of a baby portion into her I celebrated a victory.

You would think then that the decision to have her feeding tube fitted would be a no-brainer. Why would we not want to make life easier for us both. The answer was, like everything, a bit more complex. It felt like admitting defeat, like I was letting her down. It felt like a step towards a more dependant lifestyle. I felt guilty for having a permanent hole put into my baby girl's perfect tummy. It felt like another step away from a 'normal' life (as though spending 6 hours a day trying to feed her was normal!). I told myself it would be there for fluid balance emergencies only and it would not change how hard we worked to help her enjoy food. I told myself that one day she might be able to have it removed.

So we went ahead.





The first time I fed her while she slept I'm pretty sure I heard the Hallelujah Chorus. To say that it changed our lives is an understatement. Overnight we went from battling to get 500ml into her, to being able to give her 750ml and a fixed volume of nutritionally complete liquid food. The sense of relief was tangible for months and even now I never tire of being able to 'top her up' when she is poorly. For the first time in her life she put on weight consistently and her sodium level, a problem since birth, fell into the normal range taking her officially out of immediate danger from it.

This isn't to say that the feeding tube came without its challenges. Vomitting was the biggest of these. Oh god the vomiting. It was epic. At times it felt like trying to fill up a bucket with holes in. We were having to put 1800ml into her (over 24 hours!) just to retain 800ml. That's a litre of sick a day, Nice eh!

So distracted was I with cleaning up sick and tending to repeated site infections, I barely noticed that within a few weeks Mojo had stopped eating completely. It made her sick so she just stopped. We were so desperate to get the vomit under control that we temporarily allowed her to refuse solids thinking it might allow her stomach time to adjust. In doing so we allowed her to realise that eating was something she didn't HAVE to do anymore.

It took a whole year, a range of investigations and various medications for the vomiting to stabilise.

Never say no to Ice Cream
Since then getting Mojo to take up recreational eating has been an uphill struggle and one we have taken very gently. We have consistently offered her snacks, meals and drinks and she has on the whole (with the exception of ice cream) refused all of them. We pay for 'taster' school meals so that she sits at the table with her friends and goes through the motions of sharing a meal. I've counted nine occasions over this school year that her home/school book says that she has tried her food.

Most of those nine have been in the past couple of weeks. Something has changed and suddenly Mojo is interested in food again. Not just eating the occasional mouthful absent mindedly, but actively eating multiple mouthfuls.  More significantly she has asked for food. She has communicated with noises, actions and using her communication book, that she wants food and then she has eaten what I have offered her.

Almost two years has passed since she was last eating regularly and in that time her physical development has come on hugely. This means that performing the action of moving a spoon from bowl to mouth can be done independently and while for every three spoons only about half a spoon reaches her mouth it is SO worth it to watch her successfully self feed. Independence; the holy grail.

For me, the most emotionally significant was that ordinary Tuesday evening when, after school we sat down as a family and had dinner together. It wasn't a pretence, it wasn't for effect to make us feel like we were eating together, it was real. A real family dinner.

It couldn't be replicated on Wednesday (or Thursday, or Friday) but it didn't matter because we now know that it's possible. For Mojo and for us as a team, the hunger is back and we are going to work very hard to satisfy it.

Sunday, 26 June 2016

Sugar Coated Dramas

Two things I hoped would never happen, happened this week. Firstly, I had my first ride in an ambulance and secondly I started a medical notes folder for my youngest daughter.

The ambulance ride I always expected would happen one day. What I never considered was that it wouldn't be Mojo I was cradling, but instead, my conventional, easy, healthy baby. My baby who medically speaking, until Monday, only had her red book and her up to date immunisations to remark upon. I said as much to every single medic we met that day. 'This is my non-complex one' I must have said it at least 20 times. Nurses did double takes, 'I know you don't I? This isn't your usual child?'

This particular hospital adventure began when I went to try and wake Chloe up after a long nap and found she was unconscious. One vomit inducing 999 call later and the paramedics arrived, my mouth was answering their questions, my hands were comforting Chloe's tiny sweaty form but my head was in full screaming meltdown. This. Isn't. Happening.

The experience of trying to wake a child who isn't waking up is not one I ever wish to repeat, the initial eye roll when I thought she was just deeply asleep, tipping into the realisation that she wasn't conscious. It's a nightmare I've contemplated many times, but never with this daughter. It was like there had been some kind of heavenly admin error. As ridiculous as that sounds that is how it felt.

With the cause easily (& thankfully) established as severe hypoglycaemia we headed to the hospital.

While sitting in the A&E waiting room (where the producers of 24hrs in A&E must think I'm so desperate to get on telly that I keep turning up with various offspring to see if they are interesting enough!) I received a call from Mojo's school to say that she was unwell and would benefit from being collected early from school. I should point out too that currently my husband is in Australia working for a month.

Okay.... just hold the line for a moment while my head explodes. Mercifully, my ever-fabulous mum in cooperation with Mojo's wonderful school, was on hand to sweep up the chaos, collecting, feeding and nursing Mojo while I dealt with our newfound medical drama.

Usually if I leave Mojo for any period of time I leave a detailed feeding/meds timetable and multitudes of notes, flow diagrams of what-to-do-if scenarios, you get the idea. Being unexpectedly away from her and while she was unwell was disconcerting. I was drafting emails to my mum with fluid balance calculations and medicine schedules while trying to chase Chloe around with a plastic cup to get a urine sample. Note to self on this, one job at a time, nobody wins when you turn your back to try and pick up the wifi signal and miss the wee (which goes instead, all over the pile of toys provided by the lovely play specialist at the hospital, 'oh dear mummy')

I've always been wary of taking Chloe's development for granted. I've consciously celebrated each of her milestones the way we always have done with Mojo. Chloe's come far more frequently and reliably but they are no less treasured, in fact I think I value them more because I am constantly in awe of little human brains and the monumental amount of awesome things they do in these developing years. We have come to know so many children for whom that conventional development route is a daily battle that I've come to see 'normal' as pretty remarkable in itself.

Chloe's health, however, is not something I've ever really considered. Once we had been to her first 12 week scan and the clear division of her brain was evident, that was that, she was going to be a healthy baby. Why on earth I would think that she would be protected from harm by virtue of having a complex sister I honestly don't know. There is no quota of health per family, no maximum amount of drama per household.

So where are we now? We are left with two likely options for what caused her to go into hypoglycaemic meltdown. Firstly, that it is a problem to do with processing fats in the body. 'It's extremely rare' said the doctor, how I laughed. Secondly and more likely, is that it was just the perfect storm of circumstances, missing breakfast, coming down with a cold, teething, all coming together to cause a crash in her blood sugar. We wait 8 weeks for blood results.

Chloe meanwhile thinks all her Christmasses have come at once as suddenly I'm allowing cake at all hours of the day and night until I can be sure that she isn't going to slip into a coma on me. When the tests come back clear I'm sure it won't be a problem re-introducing rice cakes where for 8 weeks there were Jammy Dodgers, right...?






Saturday, 4 June 2016

Wedding words of wisdom

Should you ever find yourself researching raising children with disabilities, one of the first things you are likely to come across is an article by Emily Perl Kingsley called Welcome to Holland. It's very well known, widely reproduced and generally accepted as an appropriate analogy for the unexpectedly tangential lives parents with complex children lead.

The article addresses expectations. The ongoing contrasts between the should-have-been and the reality. The never-ending succession of things which have the potential to trigger comparisons and therefore, grief.

These comparisons are more easily drawn when dealing with something where expectations are already running high. Things like Christmas, summer holidays or, as was the case for us this weekend, a family wedding.

I am very close to my siblings, they are incredibly important to me (remember Sibling Revelry). So watching my brother wed the love of his life (and I have lucked out in the sister in law stakes too) was a big, exciting, deal.  My brother has a very special relationship with Mojo they have a kind of unspoken bond that has been evident since she was very little. As if that wasn't enough Mojo and her little sister were to be flower girls, pretty dresses, pretty hair, sparkly shoes the whole lot.

It would be very easy to self-indulgently feel sad about the differences between Mojo's experience of being a flower girl and those of an average 4 year old girl. Dress shopping involved me wrestling dresses onto her while she tried to eat them or hide behind the netting in the skirts. There was no 'give-us-a-twirl' and she had no opinions to share (other than perhaps, which offered the best opportunities for chewing). I flirted with feeling sorry for her (and myself) that day, until she started belly laughing at me trying to get the dress over her non-cooperative elbow. I was making the mistake of presuming that the only way something can be enjoyed is in the traditional, conventional way.

And so it was for Mojo's whole wedding experience. She travelled to the wedding wrapped head to toe in towels as I was terrified she would be sick on her dress. The beautiful braids which were very carefully put in her hair by the hairdresser lasted approximately ten minutes before she ripped out the bobbles and clips and restored her characteristic bed head look. How she laughed.

We adjusted her dress to fit her Upsee (an amazing harness made by Firefly which allows non-mobile
children to 'walk'). This meant she could experience walking down the aisle alongside her cousin, rather than in her wheelchair. I'd given this a lot of thought and we'd measured up and dress rehearsed well in advance. We didn't however, rehearse in the tights she was wearing on the day. So when we came to strap her feet into the foot pads in the church her tiny feet slid clean away from her shoes leaving her floating fairy-like a couple of inches from the floor. When it was clear that the shoes were not for staying put, we dispensed entirely with the footpads. Initially my conventional sensibilities felt a pang that she wasn't going to be able to 'walk' like we had wanted her to. Seeing her float delightedly down the aisle like a particularly giddy fairy holding tight to her cousin's hand left those thoughts in the dust.

As ever, Mojo ended up doing things in her own unique way with a huge smile on her face.

I got my proud mum moment and my proud sister moment and there were happy tears all round.

It wasn't just in the Kodak moments that I found peace with the parallel experiences of a non-conventional flower girl it was in the little things, the unplanned, expectation-free moments. Seeing the bride leaving the top table half way through dinner to check in on Mojo who was tucked away enjoying some ipad down time, really moved me.

Love is...
For a day so filled with unusual activity, new people, loud noises and minimal down-time Mojo naturally had her moments and so subsequently did I!. I can't pretend it's always easy to ignore the comparisons but it's only me who struggles, Mojo is completely unconcerned. That is what I need to remind myself of when things feel a bit 'Holland'.

At the wedding reception each guest had a card on which to write their words of wisdom for the newlyweds. I was distracted trying to keep Mojo entertained and happy and fed. I'd just spilt an entire bottle of feed on my cream shoes. Unsurprisingly I had a total mind blank. I didn't have a single word of wisdom to offer. It was only when I had time to reflect on the day and indeed reflect on the five years since I married my own Mr Right that my 'words of wisdom' arrived. And so...


Dearest G & D,

Be happy, be truly happy. There are no rules about how life should be enjoyed. No formula for contentment, your happy doesn't have to look like everyone else's it just has to make YOU happy.

Be prepared for happiness and joy to come heavily disguised, sometimes convincingly disguised as disaster or heartbreak. Be prepared to look and to find joy in unexpected places. There is beauty in learning to value each individual moment of joy, all the love and all the laughter. Embrace the grey, the difficult days and the challenges, the tears. These things don't spoil the happily ever after they enrich it, they build you and they reinforce your love.

You have done the difficult part, you have found each other, you looked further than most would ever dream to, you overcame an ocean of obstacles. Your story will be unique and beautiful. If you always look to each other first in all the happiness and in all the sadness there you will find your reason, your purpose, your anchor in the storm.

Be happy, be strong, be together. We love you both.
L, B, M & C
xxxxxx




Sunday, 22 May 2016

Hospital Hangover

My head hurts.

You know when you get to an age that hangovers last for three days and you are forced to adjust your boozing behaviours accordingly. A hospital hangover feels very much the same. Dehydration, exhaustion, nausea, dizziness and difficulty stringing a sentence together. There is also the added sense of injustice that all of this isn't because you had an awesome night out but instead is a result of a tortuous, sleepless, stressful 48 hours.

Despite the fact that we live in a constant state of vigilance when it comes to Mojo's health it is all too easy to lapse into complacency. Particularly as we head away from winter and with a reasonable stretch of good days under our belt. So it was something of a shock to feel the resignation which accompanies the realisation that a midnight A&E trip is on the cards. I was sitting on the floor by Mojo's bed watching her writhe in pain, completely helpless to do anything more to help. If there is anything worse in the world than being unable to help your children when they are suffering then I hope to God I am spared it. It feels like torture and even in my most pragmatic frame of mind, behind the fear and the worry is a seething anger that she has go through this again.

When she gets like this I find myself mirroring her as if by doing so she will feel less alone, less scared. When she loses her breath, I hold mine, when she arches in pain, I do the same. I breathe deeply with my hand on her chest as though I can get the air from my lungs into hers by touch alone. I stroke and soothe her even when she is beyond soothing.

It's the way she looks at me when she is really poorly that devastates me. Mojo has always had an air of maturity about her, an acceptance of her challenges and limitations and the unweilding strength of character to do her utmost to battle them. The look in her eyes when she knows she isn't winning the battle is just truly heartbreaking. It's a look I've seen far too much of.
Her feelings are so transparent that I think we are both aware that the 'fun adventure' to the hospital pretense is more for my sake than hers. Everything feels worse in the middle of the night.

After four hours in A&E tests and observation we arrived on the ward just as the sun was rising, which was, in equal measures, pretty depressing and completely beautiful. I wanted to feel sorry for myself and I was close to tears with tiredness but it's exceptionally difficult to feel bad watching the sun rise. I thought of the day I chose the name for this blog and rolled my eyes at my own sanctimony biting me on the ass.

While, thankfully, the actual experience of the hospital was mercifully brief and uneventful this time around, the hospital hangover has been spectacular. Maybe it's because I wasn't expecting it, maybe it's because these days there isn't any opportunity to recoup because 'mummy is knackered darling' doesn't really wash with an energetic toddler in the prime of her boundary pushing years. Either way I've been staggered by how difficult I have found it to shake this one.

While I've been trudging through treacle to get through the day Mojo has bounced back with her usual style. It never fails to amaze me how, once the worst is over, she is back to herself within a day or two.

Needless to say all of this week's drama has been entirely my own fault.

'Things are pretty rosy at the minute' I wrote merely a week ago.

Oh really, overhear the germs....right'o.


Will. I. Never. Learn!!




There follows some shameless self-promotion...
I am completely thrilled to have been shortlisted for the MAD Blog Award for Best Preschool Blog 2016. If you enjoy reading about Mojo's adventures and would like to vote for The Sun Will Come Up I would be very very chuffed if you took 5 seconds to follow this lovely link and voted Click here for voting form THANK YOU




Wednesday, 11 May 2016

Morning haze and zoo days

When Mojo wakes up in the morning she cries, little sobs to start with gaining strength the longer it takes us to reach her. It's quite heartbreaking sometimes. I commented to my husband that I hate how it takes her so long to wake up properly in the morning. He laughed.  'She wakes up EXACTLY like you' he said. 'You might have the adult social filters to not sob openly but I feel it radiating from you when you stir first thing. If you could sob until you wake up fully you would!' He's so right. It has weirdly made me better able to deal with Mojo's morning meltdowns, once I realised it wasn't necessarily some sinister complex thing but instead just an inherited resistance to getting the day started I knew how to deal with it (it's okay to put espresso in a feeding tube, right??)

Morning sobbing aside things are pretty rosy at the minute. This weekend was Special Children's Day at London Zoo. We first discovered Special Children's Day when a group trip was offered to us through the Enhanced Children's Centre we are supported by. That was four years ago and we have been every year since. It just seems to fall at the perfect time of year when the weather is turning warmer so Mojo's long suffering respiratory system is finally getting a bit of well earned rest from winter bugs and we're ready to play out.

It is a great day out at the Zoo with additional support and entertainment in place for children with additional needs. Some of the entertainment is more of a hit than others. The giant costumed animals at the entrance for example, are best avoided in our case as they induce Mojo's full scale scared face!

Mojo's little sister is mobile and engaged in the concept of a Zoo day for the first time this year and it was a joy to watch them sharing the experience with enthusiastic oooh ooohs and rooooaaarrs. The pair of them mimicking the giraffes sticking their tongues out to eat was too adorable.
Giraffe impression!

The thing about doing something annually is that I really notice the developments that Mojo has made since the previous visit. This time it was simple things like the choosing of which animal facepaint she wanted. Last year she needed guidance and heavy suggestion and this year she was totally clear that she wanted to be a zebra because she was wearing a stripey tshirt, like a zebra!

The additional facilities provided to help families like us do make the day much more enjoyable even despite the rare occasions when my mind was blown by the staggering ignorance of adults ducking under a barrier during a display to stand full in front of a child in a wheelchair!! Also disasterously the boiling hot weather lead to a total ice-cream sell out across the park, with the exception of Rum & Raisin (turns out it needs to be hotter than the surface of the sun before anyone is tempted to eat Rum & Raisin, who knew!)

These minor frustrations quickly faded from my mind when we took our seats for the Singing Hands performance. Arguably the absolute highlight of Mojo's entire year the Singing Hands team bring a totally joyous, engaging, inclusive, entertaining and educational show to a packed marquee twice a day during Special Children's Weekend. If you have never experienced Singing Hands stop what you are doing this instant and look them up on YouTube. Using Makaton which is Mojo's favoured communication method the ladies from Singing Hands bring a huge range of children's favourites to life with singing, signing and visual props as well as Makaton symbols
2014
2015
2016

The sheer delight that watching them live, having watched the DVDs on repeat all year, brings to Mojo, is unsurpassed. I might have cried the first time I watched her watching them. Always happy to chat to their adoring fans the team all have an amazing memory for faces and an ability to make every child feel special when they come to say hello. I love them, can you tell?

I love our Zoo trips, I love that they are an annual fixture that we have consistently been able to attend. I love that feeling of confidence that comes with knowing that so many other parents you pass are in that (Peppa Pig style) secret club of people who 'get it'. There's no explaining to do and barely a sideways glance when you're tube feeding at the picnic table.

I also (mostly) love that it's such an excitingly exhausting day that they both sleep through the night!!

We're already looking forward to next year!

Monkey Impressions

There follows some shameless self-promotion...
I am completely thrilled to have been shortlisted for the MAD Blog Award for Best Preschool Blog 2016. If you enjoy reading about Mojo's adventures and would like to vote for The Sun Will Come Up I would be very very chuffed if you took 5 seconds to follow this lovely link and voted Click here for voting form THANK YOU




Monday, 2 May 2016

Wheely exciting

I've never really recognised how similarly dread and excitement present physically. I've felt off kilter much of this week. You know that thing when you lie awake at night trying to work out what it is you're worrying about? I've had to conclude that, infact, what is bothering me is excitement.

Aside from the MAD Blog award shortlist fun (which I still can't quite believe!) we have other exciting developments which are all wheel related! Are you sitting comfortably...

Not long after Mojo turned two we went for a walk on the Common and there were lots of children out on their Christmas bikes and scooters. Mojo had a lovely time laughing and watching them. I didn't think much of it but my husband got gradually quieter as the day went on. In the evening when we collapsed into our customary heap on the sofa he told me that it broke his heart that Mojo would never be able to ride a bike. Now that got me thinking. Surely someone had made cycling accessible by now?

So off I went to google and within a few minutes I had come across Wheels for Wellbeing. There it was, accessible cycling 20 minutes up the road. So it was with a degree of smugness that I produced the details for Mojo and Daddy the following Saturday morning and off they went to see if Mojo could ride a bike. I must confess that I was concerned that it might not be something she was able to do given how tiny she was and how limited her range of motion and ability to support herself.


Well, when they returned the pair of them were high as kites! The lovely people at Wheels for Wellbeing had welcomed them warmly and gone to great lengths to find the perfect bike for Mojo and her Daddy to ride together and with the addition of some extra strength Velcro to make absolutely sure the seatbeat was secure enough for her tiny body off they went. I'm reliably informed that the two of them rode round in hysterics for the best part of an hour. We have been back many times since and each time she is a little bigger and can try a different bike. It's just fabulous, and you can even get a cuppa, what more could you wish for!

Mojo was able to experience cycling and I was okay with the fact that it was fully assisted because she was enjoying it so much.

Until of course last week when the lovely Physio at Mojo's school caught me at pick up time to say that she had tried Mojo on a trike at school and been amazed by how much she had completely loved it. Might we be interested in getting Mojo her own bike and, if so, she could set up an assessment for us with the manufacturer. Urmm. YES. So later that week I came into school to see Mojo trying out the school trike. It's a while since I was moved to tears by watching her achieve something but seeing the total joy as she rode the trike around the hall was pretty special. She looked so grown up, so proud of herself and so very, very happy.


As if the cycling wasn't enough we also found out recently that Mojo has been accepted on to a scheme run by the charity QEF (Queen Elizabeth Foundation for Disabled People). The scheme loans mini powered wheelchairs with bespoke controls (Bugzis) to children who can then benefit from being able to explore their environments more independently. It gives me such happiness to imagine Mojo driving around the school corridors under her own control.

I always find it difficult not to go embarrassingly overboard in expressing how grateful I am to the teams of people that make all these keep-me-awake-at-night-exciting things possible for us. I am filled with so much love for the people who get out of bed to volunteer their time on a Saturday morning so that Mojo and her Daddy can go cycling. I am in awe of the clever people who design and build trikes, bikes and powered wheelchairs to allow children like Mojo to have new adventures in mobility.

That's really what it's all about for me, giving Mojo more independence than I had dreamed of and, importantly, the opportunity to get into so much more mischief than she might otherwise have been able to.

There follows some shameless self-promotion...
I am completely thrilled to have been shortlisted for the MAD Blog Award for Best Preschool Blog 2016. If you enjoy reading about Mojo's adventures and would like to vote for The Sun Will Come Up I would be very very chuffed if you took 5 seconds to follow this lovely link and voted Click here for voting form THANK YOU

Sunday, 24 April 2016

Pure Imagination

I've often talked here about the future, the uncertainty of it and the fear of that unknown. I've had
The beginning!
cause recently to think about the past. I was completely stunned and delighted this week to find out that this blog has been shortlisted for a MAD Blog Award. One of the things that surprised me was that I found myself immediately self-conscious about people actually reading it!! When I first started blogging it was for cathartic reasons. It helped me to commit to record somewhere, what was happening to us when we were first coming to terms with having a baby with life limiting disabilities. It helped me to organise my own thoughts by explaining them to others. Since then the blog has grown with us. Hosting the stories of achievement, heartache, frustration and utter joy which have unfolded along the way. Until this week I had never sat down and read it from the beginning.

Once I had got past the fact that my use of apostrophes is truly terrifying (and my word don't I use a lot of brackets), I got lost in the memories. It's amazing how easy it is to forget what we were told at the start of our journey and what we expected of Mojo's life. It's surreal to go back to a time when we were just starting to work with Physio and Portage and all of Mojo's abilities were just hiding there waiting to be discovered. A time when communication with her was very much a one way street lined with instinct and guess work. 

I laughed out loud at the use of the term 'Paediatrician brain experts' in my first ever post because these days I can rattle off diagnoses, stats, medications, doses, test results and clinicians like an extra on Grey's Anatomy and I've caught one doctor using Wikipedia to confirm what I've told him (a non-Neurology specialist in A&E before you worry too much, but it did happen!).

Then while I was reading, Mojo, who was sitting beside me watching Willy Wonka and the Chocolate Factory (original version) started swaying along to 'Pure Imagination' and I was hit head on by a suddenly vivid memory that I didn't know was there.

The day after Mojo was born, when all the family, nurses, doctors, students, cleaners and passing dignitaries who had been in to marvel at the miracle baby had gone and even my husband had gone home to get some sleep. It was just me and Mojo for the first time. We were in a side room completely alone and we stared at each other silently. After a while she started to cry and knowing that she was fed and clean I was out of ideas as to what to do. I reached for my pre-baby playlist on my phone and lovely Alfie Boe sang 'Pure Imagination' to us both and Mojo stopped crying. I played it again and again and again that night, until my battery died. How could I have forgotten about that for this long?

'Anything you want to, do it.
Want to change the world?
There's nothing to it.'

The final thing that was very evident during my indulgent retrospective reading was my pride in her. I am always proud of Mojo, I am proud every single day of her determination, her strength, her achievements, her capacity for love and her bloody hard work. I would have been proud of her even had she never hit a single milestone. I am proud of her simply for being her. This week though, embarrassed as I am to admit, I have allowed myself to be a bit proud of that terrified woman in August 2011 who reached for her computer and started to write.

Image with thanks to the fabulous Mel Wilde Photography


Monday, 21 March 2016

She aint heavy....at least not yet!

 It's officially spring! We have survived another winter. I know that sounds very melodramatic but back in September with winter stretched out before us like an obstacle course of sleepless nights, infections and potential complications, March seemed like a distant utopian place and yet...here we are. Our tally for this winter was one hospital stay and two serious infections none of which caused us any major drama so I'm calling it. That was a successful winter. High fives all round.

To prevent us from luxuriating in our success for too long our next hurdle has arrived. This one arrived very inconspicuously one Tuesday afternoon in the form of a routine home equipment review by our OT. I was anticipating negotiating a change of home seating system, given that Mojo has grown so much of late that her old chair was becoming unusable. I was prepared to talk about her bath seat and take advice on rotating car seats. All of which happened but the second stage of the meeting took me by surprise. We started talking about how much Mojo had grown and how much she now weighs. We talked about manual handling and I was casually asked if Mojo would be moving downstairs, to live in the front room. My instinctive thought was 'ground floor in a street facing room on a road that we know is frequented by car thieves' not likely! By the time the OT started talking about hoists, lifting equipment and moving an entire bathroom downstairs (in our mid terrace two roomed house!!) I was reeling somewhat.

As a family we have always, perhaps misguidedly, prided ourselves on our ability to live as conventionally as possible, We adapt our routines around Mojos needs but unless you know us well our lives appear very ordinary. We have encountered that feeling of difference since Mojo started using a wheelchair rather than a buggy but, more often than not, most people think the wheelchair is a buggy and we are regularly asked to leave it outside when we're accessing venues and have to explain that it's a wheelchair. Pre g-tube when we had NG tubes in and were out and about that caused us to notice our out-of-the-ordinariness but those periods were usually brief and quickly forgotten. It's not that there is anything wrong with being different or having bespoke requirements of the world, it has just come more naturally to us to try and make life as conventional as we can.

Home is the place where everything has always felt easy, we are just us, we evolve and adapt along the way and it works, we are happy, home is our safe place. Asking us to move Mojo's room to the ground floor feels like an invasion of our privacy. It challenges my most cherished faculty. My control.

I'd challenge you to find a parent of a complex child who isn't a control freak. It's what keeps us sane. We are gatekeepers, diary managers, nurses, financial advisors and therapists. We know best and woe betide anyone who infers otherwise.

It brings out the inner teenager in me when someone tells me I can't carry my daughter up to bed anymore, or lift her out of the bath safely. I feel defensive and resentful. I get a bit 'how dare you tell me...blah blah blah'. Then I take a deep breath and recalibrate.  They have a point. I'm 5' 1 and 8 and half stone (ish).

The problem is not really a logistical one, it's psychological. Having to live on the ground floor feels restrictive, claustrophobic (certainly in this house). I wouldn't want to do it. Installing hoists and rails to our home to replace our arms and hands when moving Mojo feels impersonal and clinical. I reluctantly accept that having to adapt the house is an inevitability but it's a tough one nonetheless, because it serves as a reminder that the future is coming and things are going to become much more difficult physically for us.

We must therefore find a way to move forward and adapt which includes meeting all of Mojo's physical needs at home in a way that keeps home feeling like home and Mojo feeling like Mojo rather than a patient.

One thing that is clear is that this house isn't going to work for us. Hello rightmove my old friend.

Oh and I joined a gym. Free weights anyone?

A pretty big tagline in the circumstances but worth a try, eh!









Sunday, 6 March 2016

A Mother's Day Story

Once we had established which local library was open, my mum in her usual style, had Mojo wrapped up, in her wheelchair and 'out of my hair' in minutes. I was left with a golden hour of alone time. My mum has been doing this since Mojo was born. Whether it was giving me time for a bath, a sleep or a battle with a DWP form she's always been there. It helps that Mojo is such a good shopper, the two of them wander around the shops admiring and choosing. They love each other's company.

When they turned up later with a huge pile of library books and ear to ear grins I knew it had been another successful trip. 

In the library they had found the perfect book. It was about a little girl shopping with her Granny. Shopping for a present for Mummy. It was one of those occasions when a book reaches out to Mojo and she had the story/signing verbaitum within one or two reads. Now I must warn you that in detailing this story there will be significant spoilers for the gorgeous story 'A Present From Lulu' by Caroline Uff.

It's a beautiful picture book with big print writing. It opens with Lulu shopping with her Granny, thinking about what her Mummy might like as a present.

Now 'thinking' is something we do a lot of in this house. We think before we make choices. When the act of pointing takes the kind of effort that the average person would have to expend to, lets say, run up a flight of stairs, thinking carefully is an important mechanism to make sure we know what we want to say, or choose, is the right thing! Mojo and her sister both do the same thinking sign, finger to the mouth, hmmmm, classic thinking posture. They have learnt it from me and their doing it has exaggerated my own use of it. It doesn't speak well of my parenting, or my waistline, that frequently my youngest points at the biscuit cupboard and does the 'thinking' gesture. (It doesn't speak well that we have an entire biscuit cupboard but I digress).

As the book continues, Lulu and Granny explore the shops ruling out various options, cuddly toys, books, chocolates, sugar mice, smelly candles, floaty scarves and sunglasses. Finally Lulu finds a sparkly necklace which is 'perfect'. The book ends with Lulu giving her Mummy the necklace.

During the few days that my mum was here the two of them read that book so many times with Mojo anticipating each page, each prospective gift, with total joy.

A few days later there was much whispering and giddiness before the two of them embarked on another shopping expedition. This time they returned with a brown paper bag which was handed to me with tremendous pride.

My mum had taken Mojo to a shop which sells candles, scarves, chocolates, cuddly toys and sparkly necklaces. They had brought the story to life. Inside the brown bag was an organza bag with a tissue paper parcel inside.

Over a glass of wine later that night mum explained how she had lifted each tray of necklaces down to Mojo's height so she could pick one. She chose mine from the first tray and while she looked intently at each following tray she went back every time to the first one with the long gold necklace and blue sparkles. That was the one for me.

When my mum took her to the shop she didn't do it for me. She did it for Mojo. She didn't even do it alone it was completely conspiratorial. They did it. Together. For me.

It's present that means so much more than the gift itself.

When I write a Mother's Day card to my mum I find myself thanking her for the train fares and the babysitting, the housekeeping help and the all encompassing 'everything'.

In our case I think that everything covers a little bit more than the physical helping and the emotional support. It covers being the foundations underneath my own mother/daughter set up.

Mojo can't use words to tell me she loves me she uses signs and looks and carefully thought through actions and I know, I feel it.

I can and regularly do, say 'Thank You' and 'I love you' and I write cards and buy presents but I still find I can't articulate how deep that gratitude is. So like my own daughter I will just try to use actions and signs and maybe blogs to try and express my gratitude and my love.

Happy Mother's Day.












Thursday, 11 February 2016

Mojo's Microcephaly

Mojo has Microcephaly. I don't think I've ever told you that. Not that it's a secret of course it's just that, for us, it has always been secondary to the Holoprosencephaly. Microcephaly sits on her list of clinical diagnoses unmentioned, untreated, it just, is.
A few hours old with her Auntie

Simplistically, Microcephaly means having a clinically small head. Look it up and you see that, like many complex conditions, there are multiple causes including chromosomal and infection. Holoprosencephaly is listed 17th on the list of chromosomal causes on Wikipedia. Mojo has a microcephalic head because the two hemispheres of her brain are fused at the front. Her horseshoe shaped brain is small and therefore, her head is small and for us, aside from occasional hat shopping incidents, I don't give the visuals of it much thought.


  That sounds spectacularly dismissive given the fear and furore which has spread across the world with the news of the Zika virus and it's association with Microcephaly in infants. I don't mean to be dismissive, not at all, I have been deeply moved by the footage of babies across the world with the familiar head shape which Mojo and many of her friends share in common as a result of their Microcephaly. Familiar is the operative word because when you associate your own baby so closely with other babies they feel familial. I have the urge to protect them, love them, tell them how spectacular they are, tell them it's going to be okay, there is life after diagnosis. Not least because the world continues to refer to them as defective. How I hate that term, birth defect.

de¦fect

NOUN



  1. a shortcoming, imperfection, or lack:

These babies are not lacking, have not fallen short and are no more imperfect than any of us.

Before you think I'm running some kind of PR campaign for the joys of the Zika virus I, naturally, agree that all possible measures should be taken to avoid its spread and to prevent what would otherwise have been healthy babies being affected. I just wish that the babies which have been, didn't have to be used as a cautionary tale, held up as examples of how awful the virus is. Look at this 'alarming and disturbing' (direct quote) thing that could happen to you. It just makes me feel deeply uncomfortable. I suppose realistically, I know that nobody would ever choose to be in our shoes but to have it underlined so repeatedly, so publically so universally is disconcerting.

On the flip side, as a result of all the news coverage, I have watched and read some very positive 'living with microcephaly' features too. I have also, however, made the rookie mistake of reading the comments under these articles.

Now THAT was alarming and disturbing.

Scrolling through the views of a surprisingly large number of people claiming that anyone who chooses to continue a pregnancy once a diagnosis of Microcephaly had been made is selfish. To bring a child into the world to suffer is cruel. To dare to have another child if your first happens to have a genetic imperfection is reckless, selfish, stupid. Oh the opinions, the vitriol, the voices of all these people without the first idea about my life or my children freely advertising their distain for me, for us, for those with disabilities generally was truly shocking. Not, of course, that any of the comments were for me, these particular judgements were being cast around about a different family facing different, albeit similar, challenges.

So when Zika falls from the news agenda and the newly diagnosed parents begin the reality of living with a child with complex disabilities after the eyes of the world have been diverted. What then.  

For what it's worth, here is what I have learnt. Every single child will write their own story, do their own thing, irrespective of diagnosis, prognosis, text books and World Health Organisation advice. I'm not going to lie, it's hard work. The only thing we as parents can do is deal with symptoms as they arise, fight hard for the best support, not take anything at face value when it comes to can't and won't and most importantly love. Love, love, love, so much that nobody could ever question your child's quality of life because how can any life so filled with love be described as defective.

Imperfect, without question,

Defective, absolutely not.




Tuesday, 26 January 2016

Dude, where's my Karma?

Mojo loves stickers, especially those given to her as a reward for working hard or being brave. She displays them proudly right up until the point when her compulsion to chew and bite things takes over and we have to retrieve them from her mouth. We came up with a few ways to save the stickers from a chewy fate, we put her stickers in our diary and then Daddy came up with the brilliant plan of sticking them to her car seat. The side of her car seat was covered in animal stickers, 'well done', 'good work', 'excellent' stickers. They made her (and I) smile every time we opened the car door.

So when I saw the state of Mojo's car seat which had been attacked with a crowbar by whoever it was who stole our car from outside the house last Sunday, I found myself wondering if while wielding the crowbar he even noticed the stickers let alone understood their importance or the amount of effort and achievement they represented.
What we got back of our car!


When the Police knocked on the door at 5am on Monday morning to ask us if we were the owners of our car it took a while to process what was happening. They told us that the car had been stolen, they suspected using an electronic device that can be bought online which overrides the key fob and enables cars to be stolen as easily as having the key!! Good to know, right? The Police had stopped and then chased the car which had run into a bollard and the thieves escaped.

Of course I was shocked and angry but in my head they wouldn't have been able to steal anything from the car, given that they escaped on foot, and the Police said the damage looked minimal so I was pragmatic. I was hugely relieved that we had removed the wheelchair which usually stays in the car overnight. I could imagine the headline in the Wandsworth Guardian 'Theives steal disabled child's wheelchair'.

As the week has gone on more information has emerged and when we saw the car the damage was significantly more extensive than we had been led to believe. Baby's car seat has been stolen completely and Mojo's was ripped, crowbarred and trashed. Gone completely were the coats, girls toys and most upsettingly of all Mojos favourite chewing toy. It's one we've cultivated for years adding all her favourite comforters to one specially imported chewable necklace, it was brilliant. I wonder what they did with it, where they dumped it? Oh and, aside from that, they have written off our car!

I veered from pragmatic to furious to pragmatic again.

The redeeming feature of our week has been Mojo's health which has been on a seasonally unusual high. She's super cheerful and doesn't appear to care that we are travelling in taxis and has instead just embraced the fact that Granny has moved in temporarily to help with logistics.

In honesty there have been an awful lot of feel good Mojo moments of late, which would normally warrant happy blog posts but life has got in the way and I've not been feeling the joy much. Her first school play at Christmas, her 4th Birthday, her first wee on a potty (oversharing much Mummy?).  We've had baby's first steps a weird collision of excitement and pride, immediately followed by the pang of sorrow for what Mojo has missed out on. Not that Mojo cared, she clapped and laughed along with the rest of us. Mojo is smart enough to recognise the advantages of a mobile play mate to fetch and carry things to her!!

Mojo's progress and happiness are keeping me from wallowing in too much anger about the car. I've told baby that her Twirlywoo has gone to live with a little girl who didn't have a Twirlywoo and she's cool with that.

So when eventually the car gets sorted out and we return to normal and all the 'stuff' is replaced we can start a new sticker collection.

There will always be more achievements and more brilliance to reward.

4th Birthday fun in December