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.

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

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.

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!

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

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.

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...?