Tuesday, 25 April 2017

Thank you for the Music

I know that it won't come as a huge surprise to anyone in possession of a toddler that the word 'why' is somewhat overused in this house of late. It's a recent addition to our repertoire and continues unabated from sunrise to sunset.

The basics I can manage, why do I have to eat this, why is it bedtime, why can't I climb the furniture, why do flowers grow, why does daddy have to go to work, why do I need a bath, why can't I take your ipad as my show and tell... and so on and so forth. But then every once in a while....

On the school run, Moana soundtrack blaring

'Mummy why can't Mojo sing with us?'

Boom. That one stung.

It's not that I've not been prepared for her to ask questions, quite the opposite. We regularly talk about Mojo's legs not being same as hers and Mojo's special food tube and even Mojo's signing but it was the specificity of her question that moved me. It had just occurred to her that Mojo doesn't sing and she didn't know why.

I suppose it got to me because of all the things that Mojo loves, music is the one she loves most. If Mojo could sing, I imagine she would, just as her sister does, sing all day long.

I cleared my very dry throat and explained that just like Mojo doesn't use her talking voice in the same way as you and I, she also doesn't use her singing voice in the same way. Mojo sings in her own way.

A few days later we were all together in the car, starting out on our Easter holiday down to Devon and listening to the Mamma Mia soundtrack (don't judge me I've worked hard to wean them off twinkle twinkle and this is where we ended up!) when 'Thank you for the music' came on. Mojo suddenly became very animated, wriggled shouting and waving her arms. Then as the chorus started she signed, she signed every bloody word of the chorus. I couldn't understand how she could know it, it's not one I've taught her and then I remembered. A few weeks ago her teacher told me that Mojo had joined a Makaton Choir at school, they rehearse every week and she loves it. Now I don't know for sure but if I think I have a pretty good idea which song they are working on. It's completely perfect.

Look, I said to her sister, look, this is how Mojo sings. By the end of the holiday all of us were singing and signing Thank you for the music, including my non-Makaton using sister and her children.

Then we all sang together, and Mojo sang with us.

Tuesday, 14 March 2017

Anaesthetic Angst (Again)

My youngest is very two right now. Tantrums, disobedience, wanton boundary pushing, wilful destruction. She's also simultaneously, infuriatingly adorable.

At bedtime, when she is at her most adorable, she likes to talk about what is happening next, the next day, the next week, or more often the next party. So tonight when she asked me to tell her what was happening next I led with the fact that she would be seeing her Granny and that it was because Mojo was going to hospital for a little operation. I told her it would be a busy and fun week, happy with that she went off to bed.

Ten minutes later she was shouting for me, crying and distressed.

'What's the matter baby?'
'Mummy....I don't want Mojo to go to hospital I want her to stay with me at home'

Never has a sentence uttered by a two year old nailed how I'm feeling so exactly.

Only after I'd told the story of when she was born (at a hospital) twice did she settle and accept that there was nothing to worry about. I must have used every possible derivation of 'don't worry' during my talk down.

Then I sat, with wine, and I started writing this.

God I hate surgery. I hate everything about it. The pre surgery meeting when you get five to seven minutes of face time with a consultant who has a way of phrasing things which makes you forget every question you had or that asking them would be ridiculous. 

I hate the build up, I get almost manic. Honestly, if you want something done ask me a few days before an operation and I'll have it done within the hour. The decking in our garden has needed a clean since we moved in four years ago and today I jet washed it, then I repotted six bedding boxes and batch cooked two meals. 

I say all of this in the knowledge that we have had it incredibly easy compared to many parents of children with complex disabilities. This is only her third general anesthetic and it's officially an uncomplicated surgery. My problem is that I spend my whole life managing the factors which regulate her and keep her alive and I don't like having to surrender that control. Before we even get to the surgery itself there comes the nil by mouth period beforehand. Thanks to her Diabetes Incipidous, it goes against everything I know about keeping Mojo alive to deprive her of fluids. Even in a carefully managed, clinical setting it just makes me edgy. 

Then of course there's the consent form to sign, in all it's terrifying we-promise-to-try-and-save-her-if-it-all-goes-wrong glory. 

But in the end it has to be done. 

Tomorrow I will hold her while she goes under and be there when she wakes up, and in the period between I will pace, drink tea, pray and check the flashing pager every thirty seconds (yep like the ones in the M&S cafe except at the end you get the feeling back in your body, rather than a cheese panini) 

All of this build up, adrenaline, fear and disruption is a reminder of how un-normal our life is sometimes. It also served as reminder to me of how dark my sense of humour can turn at points like this. I recently had a message from a friend asking if we could visit this weekend, I rushed out a reply saying that it would depend if Mojo recovers well. 'If she does, we will be there' I wrote. Except I didn't and in fact when I re-read it, the message I sent my friend said 'if she dies, we'll be there'. I swiftly followed it was some expletives and an explanation but it really made me laugh. Which obviously then made me feel agonisingly guilty. 

The other thing I need to be wary of in relation to procedures like this one is pinning all my hopes on it being life-changing. This adenoidectomy should assist Mojo with her breathing, swallowing, excess secretions and even her eating. If it is able to achieve even half of what we've been told might be possible it would be amazing. If it improves her sleep that would be life changing not only for her but for us. All previous life-enhancing procedures have brought with them new problems, different challenges to adapt to so I await the curve ball which will appear once the dust settles this time around.

While this update is heavy on the self-indulgent angsting the last few weeks have also brought with them some of the best proper family times we've ever had. Not least of these highlights was the weekend we cared for the school baby chickens. I made a bit of a mini vlog mostly because my family were astounded that I, being reasonably pet-phobic had agreed to care for 9 chickens in my kitchen and wanted to see how I coped! Follow You Tube link to witness our pet prowess...

Click Here for Team Mojo's Chicken Adventures

Oh and P.S. say one for us tomorrow if you're so inclined.  

Thursday, 16 February 2017

Is that your final answer?

I recently took part in a parents evening for families who are going through the process of making the decision as to whether to send their child to mainstream school or special school.

I was there to tell our story and highlight the factors which led us to choose special school for Mojo. It felt strange to be asked to do it because it made me recognise that Mojo and her friends are not the babies anymore. We have successfully navigated this hurdle and emerged with a story which shifts us to expert status. It was an opportunity to help those about to begin the inescapably arduous task of securing an EHCP with the right support package for their child, in the way that other families helped us when we were starting out (although two years ago literally nobody knew what the hell to do with an EHCP form but that's another story). 
The parents I spoke to after the presentation were mostly full of confusion, stress and conflicting emotions. All very familiar things from our own journey. I could completely understand why they were feeling so torn given that I, being completely confident that Mojo is in the best possible school for her needs and is progressing beautifully, came away with concerns that I'm not doing enough to ensure she spends time with non-disabled children of her own age and what she might be missing out on by being 'in a bubble'.

In the end I came back to my Dad's advice, which as a teenager I used to think was depressingly glass-half-empty but the older I get the more I see the truth in it. He always says that nothing in life, nothing at all, is ever completely good or completely bad. We just make choices based on what we think is the best thing to do at any one time.
Parenting a child with disabilities involves so many decisions regarding care, health, support therapies and communication. I find advocating for my daughter in a world where I frequently feel out of my depth and feel like the least qualified person in the room is daunting. Trying to make the right choices for her. Desperate to get the answer right. Desperate for there to be a right answer.

Often there simply isn't a right decision. There are just decisions. Some feel like a small step in the right direction and others feel like a giant leap of faith but each one shapes what comes next and each one builds (or tarnishes) your confidence in trusting yourself to make these decisions.
While we can feel relief that we have, so far, made choices which have turned out to be absolutely right for Mojo regarding schools and education, I still find the medical decisions the hardest to come by. The sleepless nights come from worrying about not doing enough to ease Mojo's health struggles.

We recently made the choice for Mojo to have more surgery. A simple, hopefully uncomplicated adenoidectomy and grommet insertion. Why is it that the simple surgeries are the ones which trouble me the most. It's like I'm poised for something to go wrong during an avoidable procedure, one we've chosen to have to improve her quality of life, rather than a medically necessary operation. The weight of advocacy when it comes to putting her at any risk can feel a bit suffocating if you over think it. Over thinking? Me?
It may well be that it is her frustration with my decision making which has motivated Mojo's recent developments with communication. Our essentially non-verbal girl has started to become a bit of a chatterbox. The noises and squeals which have always been part of her vernacular are become more formed, more intentional. There have been times lately when I hear a word, a whole recognisable word and it's come from Mojo. She shouts for Daddy when he gets home. She answered the question the nurse asked her with the word 'sticker' clear as a bell. She has even learnt to say her BFF's name. As if that wasn't exciting enough, her fine motor skills seem to be keeping up with her vocalisation and her Makaton signing is shifting from Mojo-approximations of words and letters to sharper more obvious signs which are far more easily recognised by other Makaton users. These developments are very exciting for us. Mojo has raised a bar which I had taken my eye off, I'd been looking at the communication book while she decided she'd not given up on verbalising just yet.

In the end the choices we make only go so far and the real decision making is done, instinctively, by Mojo herself. I might think I'm in charge but ultimately it's always in her hands.

Wednesday, 25 January 2017

Who DOES that?

When Mojo first got her wheelchair it was so exciting. This small buggy like chair which was fitted to support her needs exactly. The length of each bone in her legs was measured, the exact angle to best support her difficult hip joint, the correct strap lengths to support without limiting her movements. It was a prescription chair, bespoke and truly liberating for her to be able to have a 'grown up' chair of her own.
Mojo's first fittings

Since then the wheelchair has been everywhere with us. It is battered, scratched, it's been covered in food (and sick, lots and lots of sick). It's been on the receiving end of a significant amount of what my granddad used to call Navy language as I've wrestled with it in the pouring rain or caught my foot on the brake which clamps shut like a vice. We've driven it over beaches, cobbles, woodland trails and approximately one million muddy puddles. It's been on buses, trains, boats, aeroplanes, even a horse and cart. It's almost like a pet, its something that comes everywhere with us. We love it, it is a part of Mojo and it gives us all far more freedom than we could have without it.

The only problem we've had with it is it's size. Living in a Victorian terrace, space is not abundant so during the week when it's used just for the school run it lives in the boot of the car. When our car was stolen last January we thanked God that we had removed the chair from the boot the night before. Imagine we said, what we would have done if that had been stolen.

Fast forward a year, almost to the day, and I arrive outside school (late, as ever) on a freezing cold morning and open the boot to get the chair out only to find it's not there. My first thought was that I'd forgotten to put it in the boot but I knew that we hadn't used the wheelchair the previous day so it was definitely in the boot.
Flower girl throne
Someone had (and don't even get me started on the how) broken into the car, stolen the wheelchair and a box of Mojo's medicinal milk. The realisation was a slow creeping one but when it hit, it hit hard.

COVERED in food
I think I must have repeated the words 'WHO DOES THAT?' thousands of times over the course of the morning. I felt violated, worse I felt that Mojo had been violated, that someone had stolen a part of her, someone had stolen her legs. I felt that I had allowed that to happen, that I'd not protected her from it.

I cried with anger as I carried her from the car to school, it was the only choice I had. She's too big to carry these days and it felt undignified. Despite my carrying her regularly at home, out and about feels different. I was so deeply sad and so blazingly angry.

I've had to tell myself that whoever took it mustn't have known what it was. That they must have thought it was a fancy pushchair. I don't even like to think about where it might be now, dumped somewhere, sold for scrap? It's not like children's NHS wheelchairs are a typical stolen to order item!

Mojo in her usual style thinks using her little sister's old pushchair is hilarious, she laughs when I put her in it. She's got the right idea, you have to laugh. Later that same day when, still completely distracted by the morning's events, I managed to lock myself and our youngest out of the house with no house keys, no car keys and a phone with 6% battery life, I did laugh. So did the locksmith. So did the afterschool club who had to look after Mojo until I made it to school.

Always on the lookout for the brightside, all of the drama of Monday did distract me from dwelling too much on the fact that Mojo's next surgery date has been scheduled. A meeting to discuss the specific dangers of sedating such a complex child is imminent and endocrinology are drawing up a Mojo-friendly fluid plan.

The two positives I chose to take from the stolen wheelchair saga are as follows. The NHS is just amazing. Within a week Mojo will have a replacement chair. It won't be as bespoke as her own chair but it will mean she doesn't have to be carried or use a baby buggy for long. The other overwhelming positive is that I have a really remarkable support network of friends, family, school and even neighbours who made me feel better with both practical support and just by sharing my outrage and reminding me that I shouldn't give up on my faith in humanity just yet.

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

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.